A WALK TO FREEDOM
TOWARD A RESTRAINT FREE ALZHEIMERS CARE
Susan Tomory
1991
TABLE OF CONTENTS
THE FIRST MEETING 3
THE ILLNESS AND ITS STAGES 8
THE HEALTH TEAM 14
THE MAKINGS OF A HOME 18
ADMISSION 23
THE FIRST NIGHT 28
THE FIRST BATH 31
GOOD MORNING WORLD 33
ACTIVITIES 35
CHEMICAL RESTRAINTS 41
EMOTIONAL TIES 43
DIET AND NUTRITION 48
MEALTIME 50
VISITS 52
DISCHARGE 56
BEHAVIOR MANAGEMENT 59
MEMORY 63
DECISIONS 66
EPILOGUE 68
Freedom from bonds is not so much about loosening the physical and chemical restraints of patient care, as about gaining freedom from the long ingrained habit of “professional detachment”. This in turn gives freedom to the innate desire to touch our fellow human beings not only with medicine cups and needles, but with our outstretched arms and hearts, too.
Other freedoms will soon follow and will be the natural outgrowth of our freedom to love.
THE FIRST MEETING
“How did you decide to become a pediatric nurse?” one of my newfound friends posed the question to me. I had to think for a moment, since I had made this decision such a long time ago, and I had not had to answer this question before.
“Because they are so helpless, so vulnerable”, I answered.
My friend — not a nurse herself — smiled and said: “You are in a new country now and you should look into geriatrics if you want to find truly helpless people. Babies are at least cute, but these old people have nothing going for them.”
I had just started a family and did not work in those days, but as fate would have it, I soon had to find a nursing home for a distant relative who needed care after surgery. The places I visited left me with lasting impressions.
I remember one home advertised as being in a nice country setting, sitting at the end of a road leading nowhere. Every room in the old farmhouse was filled with beds with hardly enough place to stand between them. One was able to move about outside, but I wondered what these poor people would do after the not so long New England summer. In a corner cubicle behind glass walls sat a person who kept an eye on the crowded room; but she did not seem very eager to interfere with what she saw. Her face did not show any emotion, except for a mild interest in the magazine in front of her. The rooms were hot as the summer sun poured in through the windows, and the air was stale with the smell of old food and urine pervading everything. There was no air-conditioner, no TV, no books, no craft items. I remembered a sentence I had read in the captain’s diary of an old whaling ship, on display in Boston harbor: “There is nothing to do, and nothing to do it with”. But at least the sailors had a lovely ocean breeze, I thought to myself as I turned around and hurriedly left the place.
The next home I glimpsed at was palatial in appearance, designed for royal bank-accounts. As I wandered through the darkened corridors I saw shadows of people, locked or tied into variously designed wheelchairs, stretching their little arms toward any visitor coming through the door: “Help me...” The air was heavy here, too. The improvement was an airconditioner in every room and a flickering TV in the corner of the parlor. The people looked thin, pale and hungry. The atmosphere was cold, not because of the rattling airconditioners, but for lack of a nurturing human presence.
“How right you are”, I said to myself, thinking of my friend who had suggested geriatrics. She had obviously trodden similar routes to those I walked now.
It was rather early in the morning as I went to see the third nursing home. It was a lovely home on a hilltop with huge beech trees and a view of the street, where mothers walked their small children, and the little ones waved their hands toward the nice old people sunning on the balcony. Mistakenly I entered the back door, near the kitchen. The air was rich with the aroma of freshly brewed coffee, bacon and eggs and blueberry muffins just coming out of the oven.
“Hello there”, said a lady, smiling not only with her lips, but her eyes too. “You came just in time for breakfast, I hope you have not eaten yet!”
With this she guided me into the dining room, where we all settled down, residents, caregivers, visitors alike to a nice breakfast — or at least a cup of coffee and muffin and cheerful conversation. Here I learned that the lady I had met in the kitchen was the owner of the place. This place was the only nursing home I have ever seen that truly deserved the name “Home”. Eighteen people lived here in total freedom, coming, going, doing “their” thing, knowing about one another and helping one another too. One of the gentlemen was once a sports reporter, who was first to fly in the Wright Brother’s airplane. Another gentleman helped to build the Alaskan railroad and was in lively conversation about those days with another resident, who in his youth did some mining in the same region, living in railroad cars; he remembered a winter so bitterly cold that the train had to be moved back and forth to prevent it from freezing to the rails. One had a feeling, sitting among them, that this was a happy place and it was good to be there. “I am going to change over to geriatrics I thought as I drank my coffee and it is here that I want to learn how to do it”.
Though it turned out that my relative did not need a nursing home after all, I started my first American geriatric experience here. It was only later that I learned that the owner was a nurse who created this nursing home exclusively for people “nobody wanted”. I saw people come into the home showing the all too visible signs of neglect and street living who, in a few short weeks, were blooming, just as the rest of the residents. Here I experienced the healing power of love — first hand. My children enjoyed stopping by on their way home from school, made lasting friendships, and found eighteen surrogate grandfathers. The pay was low, but the nursing satisfaction was never greater.
Since then nursing home standards have been firmly established, to which the first two nursing facilities had to conform. My family eventually moved to the Midwest, where I again made my rounds — this time for employment’s sake — among the local nursing homes. While searching I had the memory of several wonderful years to look back on and to use as a standard I wanted to uphold in the future.
Finally I found a small nursing facility where I hoped to put my ideals into action. It was relatively small, the office was placed unobtrusively in a corner, the air was clean, the floors shiny, the large windows had a clear view of the street and of a golf course, with ducks in a little pond. The atmosphere was warm and the residents looked well cared for, except for a few, who were tied into chairs or wheelchairs. I started working here in the hope of correcting this situation. Little did I know that here I was about to meet the most forsaken group of people, even within the geriatric situation: that of the Alzheimer’s Disease sufferer. This was at a time when nobody knew what this disease and its care entails from a caregiving point of view.
One morning as I entered my workplace, all the residents were still fast asleep, except one. He was walking — if I may call his activity walking — tied into a chair. He was hunched over, with the armchair on his back, moving like a human turtle from his room toward an unknown destination. With an assistant’s help I freed him from his burden and he started to walk speedily up and down the corridor, the assistant racing in his footsteps. His gait was steady, his balance good and I could see no reason why he should not be permitted to walk about at his will.
“Do we have to keep him restrained?”, I asked at the report.
“He might run out of the home,” was the answer.
“What is the matter with him anyway”, I asked again. He was on no medication, he was strong, he appeared friendly enough, even though he did not communicate.
“Who knows! He was the director of a large company. A few weeks after his retirement he just ‘snapped’ and he has been senile ever since”.
“Could we give him his freedom at least while I am on duty if I take responsibility for him?”
“You will be sorry”, was my fellow nurses’ OK to my proposal.
The home was laid out in a U shape. One arm of the “U” consisted of twenty beds in ten double rooms. It was a relatively quiet section of the house, close to the nursing station. Dan liked to pace up and down the corridor, stop at the fountain and pace again. He looked happy and contented with this activity, and cooperated well with his caregivers.
A fragile little lady lived at the end of the same corridor. She was dressed with care, and over her dress a linen, sleeveless jacket was placed, ending in four long tails, by which she was securely fastened to her chair. “I have to pee, I have to pee” she kept repeating.
“Can you help me to walk her into the bathroom?”, I asked the assistant.
“She can walk”, the assistant replied. I unfastened her and she proceeded with a short, tippy-toed gait to the bathroom. She managed her intended procedure independently quite well, so I let her stay independent.
“You will be sorry”, I heard the echo of the previous warning. “She will drive you crazy!”.
“I’ll take my chances”, I said.
The little lady tiptoed after me to the nurses’ station, stopped in front of the desk and asked: “What time is it?” I told her the time, she smiled, walked away, only to return in a short while, asking the time again, tip-toeing in place while awaiting the answer. As the days went by, telling the time became as automatic in my life as taking a breath.
In the meantime, the staff was taking notice that some of the released residents were doing quite well, and called me to the other parts of the home, showing me other problem patients.
“Do you want them?”, they asked.
“I would like them all, if we can make the appropriate room changes”, I said.
“Bonanza!”, said my fellow nurses, and by the next morning I had my own version of a wing, full of people nobody was anxious to have. Looking back I realize that this was my first Alzheimer’s Unit. It was a training ground for learning not only how to care for these people and even more so for their families, but also to fully realize their needs. I had to reevaluate the needs of human beings placed into an institutional situation, where they did not seem to “fit”. The more I learned from these residents, expressing their needs and feelings with the honesty of a child in words and action, the more I could mold their environment to their satisfaction.
My charges were of various backgrounds, but had two things in common with one another: they were all rather healthy and strong people, and they all had the same diagnosis of senility.
One morning we had a new admission and as I had one empty bed the new patient had to come to “my place”, as everyone called this section of the nursing home.
As she was rolled into the home on a stretcher, I glimpsed a frail little body curled up in fetal position. Her face was young, with pink cheeks as she looked at me with huge, violet eyes behind the longest eyelashes I have ever seen. Next to her was her husband, who had taken care of her until that day. Now he was looking for a miracle that would help his wife to recovery. I glimpsed at the diagnosis on her chart. “Senility”. “Age: fifty-two”.
“There must be a mistake here”, I thought to myself. The husband, as if he had read my mind, said:
“There must be some mistake in this. She just can’t be senile. It just can’t be. Anne is so young!” His eyes filled with tears and he left the room vowing,
“I am going to bring in some specialist”.
He kept his promise. Hardly a week went by without his arriving with a different physician, each time representing a different discipline. Physicians came and went, made minute changes in orders, but never answered any of our questions: what is the illness that afflicts this lovely lady, that prevents her from all the activities that are part of normal human experience? She had to be turned in bed and lifted into a wheelchair. And she really needed a safety belt, for she could not hold her body in a safe position. She had to be fed, and she needed encouragement to swallow the finely chopped food. She was unable to talk, except for her big, shining, expressive eyes, which showed concern, delight, or any other feelings, appropriate for a given situation. Her husband was there at her every meal. He took her for a walk in her wheelchair every day, inspected the kitchen for tomorrow’s meal and the housekeeping for every detail. On rare occasions he permitted himself to be human, to sit down with the nurses and confess his utter bewilderment and helplessness as far as her disease was concerned. He brought in pieces of art she made only a few years ago. “Look at these,” he would say. “Yet now she cannot even hold her head up!”
There has to be an answer, he repeated week in and week out
We nurses were so conditioned by now to the frequent visits of new specialists he cam with that we did not show any great interest in the arrival of a new gentleman, who cam, examined Anna thoroughly and ordered some tests. Upon his return the next day, he asked for the chart, looked at the test results, then he crossed out the diagnosis of senility and wrote:
“ALZHEIMER’S DISEASE.”
“Oh....”, I heard myself saying. “Oh...”
“Do you know what this disease is?”, asked the physician.
“Not really...” The hesitating words were intended to buy some time, while my mind feverishly tried to exhume at least one acceptable definition of this disease from under the decades-deep layers of unused nursing information. But I could not unearth even a word fragment as a hint.
“How can you take care of her then?” asked the doctor. “Why don’t you read up on Alzheimer’s disease and tomorrow we will talk about it.”
After work I rushed to the library to find some literature about Alzheimer’s disease but came up with nothing. I consulted hospital libraries with only meager success. The only information I found about Alzheimer’s was a short entry in medical dictionaries giving a few essential facts about Dr. Alois Alzheimer’s life and works. But there was nothing about subsequent research or findings which could serve as guide in the treatment and care of the so afflicted.
“How did you make out in the library?”, asked the physician the next day. I told him about my failure to find any information on Alzheimer’s Disease.
“You see, it is up to all of us now to correct this situation by observing, collecting and documenting data, and disseminating information about this disease”, he said.
That day marked the beginning of the rest of my life: attempting to make life livable, dignified and independent for those who seemed to have lost everything to Alzheimer’s Disease.
CHAPTER II
THE ILLNESS AND ITS STAGES
Early every morning as I entered my little kingdom — the small wing of the nursing home where I managed to collect my twenty unwanted residents — I had only to stop for a few seconds and listen to know what kind of night they had all experienced. I had learned long ago to listen with all my senses: sight, smell, hearing, touch and the unsung, but very special sense of caregivers, — mothers, nurses, spouses or important others — that seems to be aware of their charges’ condition even if they are not present. This is how a typical morning went:
First I heard rhythmical claps accompanied by an equally strong voice announcing in the same rhythm: “We are hung-ry, we - want - to - eat”, repeated endlessly.
I can still picture the round, pink cheeks of a stout little lady, Georgette, who sang out these words. She was in her eighties, but no line on her smooth face, nor her energetic comings and goings round about her room would have betrayed this fact. Her internal clock has set aside about every three hours while awake as eating time: Thanks to her high activity level, her nights were spent in peaceful sleep from eight at night until the first rays of sun awakened her. I am sure her background as a farmer’s child and later as a farmer’s wife instilled in her this “early to bed, early to rise” routine, which was carried over into the realms of Alzheimer’s disease, where many of her talents became part of an unknown world. Part of her speech she retained was words related to eating, to procreation and her favorite song, “God Bless America." She used these words as her needs and mood dictated it. Words related to food and eating were used appropriately when she was hungry. She sang “God Bless America” when the sun shone, her tummy was full, and the world looked all right to her. Four-letter words about procreation filled in the gaps, as she slipped from complacency toward anger and resistance. If for example a well meaning nurse awakened her from her best slumber to take her to the bathroom and then asked her if she wanted a sleeping pill Georgette would react very negatively. Since she could not tell, in so many nice words, that she did not have to be awakened to go to the bathroom and that she was embarrassed by not understanding that word “sleeping pill” meant, she used the only alternative in her vocabulary, and I must confess, quite effectively. No one who ever encountered her under similar circumstances would awaken her again.
I knew as soon as I heard that morning clapping and chanting that Georgette was sitting in front of a large, square table with green formica top. As I learned from her daughter this type of formica covering was used in her home for the counter-tops and kitchen table. This made her feel at home and she never wanted to stray far from her “kitchen”.
Across the table sat her roommate of similar age. Her retained vocabulary consisted of a “Yea”, which she modulated endlessly to fit her mood. Her little profile reminded me of the moon-crescent faces children draw in kindergarten. Right now her toothless mouth formed her “Yea” with great enthusiasm at every downbeat of her roommate’s “we want to eat” chant. As they heard the distant clatter of breakfast dishes and smelled the aroma of coffee approaching their “kitchen”, Georgette switched to “God Bless America”, and her roommate, Mary, helped her carry the tune. The two had moved along on the wings of harmony, always in accord with one another’s moods and action, since they became roommates. They were all right, I knew even from a distance.
The door halfway down the corridor opened and Dan came strolling out with long, steady gait toward the drinking fountain. Ever since he had been freed from his “turtle-shell”, he had began to dress impeccably, as he did in his executive days. As a matter of fact he had become an executive all over again. After a few sips of water he came back to the desk, picked up some papers, a pen, and a ruler, and faced me with a smile.
“Everything is in order”, I report.
He nodded, and proceeded down the corridor, inspecting the rooms. Then he returned, put down the symbols of his office, picked up the morning paper, and sat down in the dining room that was reserved only for “my” people. I knew that he was probably holding the paper upside down, since he had tucked the meaning of letters long ago into the deeper recesses of his memory. But the smell of fresh ink on a paper slightly moist from the morning dew and the leisurely waiting for breakfast brought back all the nice feelings of his old vacations and started the day out in a jolly mood.
His roommate soon emerged. Fred was a sight to remember forever. He was tall and skinny, with bright blue eyes and a full head of tight curls crowning his seventy year-old head. He always wore a gleaming white shirt with cufflinks, a suit jacket of some shiny material, and a most outlandish tie with bold design. Underneath he had on only his shorts, from which incredibly thin, spindly and hairy legs emerged. One of his feet was covered with only a sock, the other with a shoe, over which he managed to pull his other sock. He was verbal and — as always — very polite. Fred asked about everyone’s well being, chatted about the weather, and commented on ladies’ attire, which was his specialty. He even asked us if we were not tired of wearing white forever and suggested the use of more color to complement our beauty. You could not help but love this mild mannered, soft spoken gentleman, who remained a gentleman to the end.
The clip-clap of medium heeled shoes approached and passed me. A lady with very youthful features, a slim, well-exercised body and flowing motion of arms were tell-tale signs of a healthy, young body. Ella had arrived recently on the unit. She had a successful real estate company while she herself lived in a fashionable condominium. Neighbors became concerned about her when she began to approach them with fists full of hundred dollar bills, making little or no sense at all as to what she would like, even though words poured unceasingly from a sweet, but slightly business-like smile. It was as if someone was pouring random words from a bucket, with seemingly no connection in content or structure. After her spending sprees she began to wander on the condominium corridors in the middle of the night, pounding on doors, looking very frightened and lost. The condominium community — very good naturedly — helped her for months, hoping she would “snap out of it”, whatever this ‘it” may be. As things started to take an obvious turn for the worse, they notified her physician and on the same day this lovely, forty-three-year-old lady became a member of our community. I guided her toward the dining room, so she could join the others in the early morning coffee and donut party.
Fleetingly, I saw a gentleman pass the door, with his beloved straw hat on his head. I knew from experience that this “hat-on” situation spelled trouble if we could not nip it in the bud.
“Doctor”, I called after him. “Let’s have a cup of coffee before you go”.
“Will you have one with me?”, he asked with the twinkle in his eye that had probably drawn quite a few coffee partners in his life.
“Sure...”, I said, while I managed to sneak the hat away from him, and hid it from sight. The first battle of the day was won.
Doc was still in his “practicing” age, when his wife and daughter discovered his slight forgetfulness. He eventually deteriorated to such an extent that he forgot who his wife and daughter were. He knew they were beautiful and that he liked to be in their company, but every few minutes he posed the question: “Who are you?” to them. His office had to be closed, and since it was near our nursing home, he entered there. He enjoyed a lot of one-to-one conversations. He was alert enough on occasion to realize his profound intellectual loss.
“What is becoming of me?” he asked.
“I planned to retire in a few years and then travel. I always wanted to travel. And now I don’t even have money to pay for our coffee...” With these words, he turned his pockets inside out to demonstrate how empty he felt. Lost. Helpless. The only key to freedom he retained was his straw hat. He never went outside without it, and never thought of leaving unless he caught sight of it. Once he had his hat on, nothing could stand in his way. He was strong and could push several people aside with one shove while heading toward the door. We learned not to stand in his way. We just followed him out the door, into the street, and around the block, which route eventually brought him back to the home. At this point he was tired enough to accept a helping hand.
“Not all good things need money”, I said. “How about a little golf? We will ask Ella, too. OK?”
His eyes lit up, as he left with Ella and me through the back door, which led to a small piece of green lawn fenced on three sides and dotted with shade trees and bushes. This was our golf course, where both of them continued to practice their old hobby. It was a safe enough place, except for the one open side of the yard, which led to the loading dock and the street.
“I will have to request a fence with a door again”, I thought. “Perhaps I should do it myself, to have it done in this season. Last summer went by, and it is summer again, and we still don’t have a place where the two can go out independently and safely. A piece of a ten foot fence would open up a world of freedom to them, and save many nursing hours that could be spent a lot better. Well, there is always hope...”
Ella’s roommate was Ottilia, a lovely lady, wife to a successful artist. She did not have any children and lived a very protected life. This was the first time that she was away from her husband, which was harder on him than her. She did not remember who he was, and sometimes viewed him with suspicion, and fled the room as he entered. Doc’s presence became a familiar and comfortable sight to her and she attached herself to him. Doc liked the company of pretty women and was happy about this turn of events. Since Ottilia was nonverbal, they used to wander hand in hand on the corridor endlessly. Ella watched these excursions with jealousy, but never interfered. Ottilia on the other hand never wanted to take up golf. There was a comfortable friendship between the three of them, with set routines and set roles.
I checked Ann. She was still asleep and looked comfortable, so I proceeded toward her roommate.
Edyth was awake, but sheepishly she pretended to be still asleep.
“Rise and shine”, I patted a well rounded part of her blanket. “Time to get up!”
“Do I have to go to school today?, she asked with marked anxiety in her voice.
“No, it’s vacation time, beginning today”, I said.
“Oh!...” she exclaimed. “Oh!...”, and happily threw back her blanket. I laid out her clothes and she started to get up to get dressed. In no time she managed to put her head and two arms into the openings of her panty and was now stuck.
“Help teacher”, she begged, and kicked me as I approached.
“Now I understand her feelings about school”, I thought to myself, “and there must be a teacher somewhere who shares her feelings, for similar reasons... and mine too, right now...” Finally we managed to get her dressed, and into the dining room. By now the others also arrived, and we all settled down for coffee and to sense “the mood of the day”, which would determine our activities, for the next twelve hours.
“Good morning”, I heard a familiar voice. “May I have a cup of coffee too?”
Dr. Mac our medical director had stopped by for one of his impromptu visits since he was in the neighborhood anyway.
“How is Ann doing?”
His interest had been aroused by Ann’s case. I knew he must have found some interesting facts about Alzheimer’s disease he wanted to share over coffee.
“Ann is all right, in her own little world. Only I wish I knew what this private world of hers incorporates”, I said. “Sometimes I think she knows everything, has an opinion about everything, but lacks the instrument to express herself, save for her eyes and facial expression. I’ve learned to read some of the things she says in this special way of hers. Actually I know a lot about her.”
“What do you know?”, he asked. I was sure the results of her last brain scan were in his mind and the evaluating physician’s expressed opinion that there was ‘nothing between this lady’s two ears...” a not too kind medical slang which I detested more and more with each passing year.
“Let me see...” I began to gather my thoughts. “I know that she hates to be in the dark at night, and a little nightlight brings her comfort and sound sleep. She hates to feel alone and she enjoys to see people going about their business. Even though she likes human companionship, she does not like to be ‘fussed about’. She expresses her annoyance with a funny little frown and an impatient motion of her hands, which in turn translates into a full-body jerk, the intensity of which shows me the extent of her frustration. She is a very proper lady. She will not touch her breakfast unless she is bathed and her hair is done: she will clamp her teeth, and if someone did not know this habit of hers, he might start her on tube feedings. She enjoys eating, but her food has to look appetizing. An uninteresting looking tray of soft food will never do for her. She hates spinach and green peas and loves pies, especially a la mode. She makes the funniest face when she sees spinach and we both laugh. She has a terrific sense of humor. She loves to watch comedies on TV, especially Jerry Lewis. She also listens to jokes, where the explanation is not too long, and laughs with gusto. She loves her husband, but his overprotective attitude annoys her at times: on such occasions she closes her eyes and smiles, as if to say: ‘I am OK, you can go now’. She is worried about her son, and I believe she feels guilty in some way, because he has Down’s syndrome. She is very tense each time he comes, and appreciates a hug and reassurance after he leaves. She loves to go outdoors and look at the flowers and the sky. She loves birds. One day a robin came quite close to her wheelchair: her face was gleaming with joy. I think I’ll bring a birdfeeder for the winter I added as a quiet afterthought. I hope she will still be with us”.
The physician looked at me earnestly. I knew what he was thinking: life, glorious as it may be, is not always the best hope...
“She still has so much joy out of life” I exclaimed.
“I learned a lot about Ann” he said. “Be sure to include her communication and that of the others also in their charts and make it a permanent record.”
He stopped at each table and had a few words with each of the residents, who visibly appreciated his attention. I followed him to the door. He handed me a sheet of paper.
“You know, Dr. Alzheimer did a terrific study on his patients. I still don’t know why we did not pay more attention to him, and why there are so many cases all of a sudden now. I am sure all of your patients have Alzheimer’s, all of the probably in the middle of the advanced stage, except for Ann. She is rapidly approaching the end. Anyway, I changed all the diagnoses to Alzheimer’s,” he said. “It would be good to get an autopsy permit from the family and see what exactly is going on there...”
“I can try”, I said. “But how can I put even more burden on her family with this decision? They are frightened, and guilty and helpless, as it is...”
“It will benefit them, and many others some day”, he said and left. I looked at the paper. It was Dr. Alzheimer’s description of this strange disease as it appeared in translation in the Arch Neurol. — Vol. 21, July 1969, page 109. The original article was printed in 1907 in Germany with the title “On a Peculiar Disease of the Cerebral Cortex”. The excerpt of the article that Dr. Mac brought in read as follows:
“Clinically the patient presented such an unusual picture that the case could not be categorized under any of the known diseases. Anatomically the findings were different from all other known disease processes.
A woman, 51 years old, showed jealousy toward her husband as the first noticeable sign of the disease. Soon a rapidly increasing loss of memory could be noticed. She could not find her way around in her own apartment. She carried objects back and forth and hid them. At times she would think that someone wanted to kill her and would begin shrieking loudly.
In the institution her entire behavior bore the stamp of utter perplexity. She was totally disoriented to time and place. Occasionally she stated that she could not understand and did not know her way around. At times she greeted the doctor like a visitor, and excused herself for not having finished her work; at times she shrieked loudly that he wanted to cut her, or she repulsed him with indignation, saying that she feared from him something against her chastity. Periodically she was totally delirious, dragged her bedding around, called her husband and her daughter, and seemed to have auditory hallucinations. Frequently, she shrieked with a dreadful voice for many hours.
Because of her inability to comprehend the situation, she always cried out loudly as soon as someone tried to examine her. Only through repeated attempts was it possible finally to ascertain anything.
Her ability to remember was severely disturbed. If one pointed to objects, she named most of them correctly, but immediately afterwards she would forget everything again. When reading, she went from one line into another, reading the letters or reading with a senseless emphasis. When writing, she repeated individual syllables several times, left out others, and quickly became stranded. When talking, she frequently used perplexing phrases and some paraphrastic expressions: milk-pourer instead of cup. Sometimes one noticed her getting stuck. Some questions she obviously did not comprehend. She seemed no longer to understand the use of some objects. Her gait was not impaired. She could use both hands equally well. Her patellar reflexes were present. Her pupils reacted. Somewhat rigid radial arteries: no enlargement or cardiac dullness; no albumin.
During the subsequent course, the phenomena that were interpreted as focal symptoms were at times more noticeable and at times less noticeable. But always they were only slight. The generalized dementia progressed however. After 4 1/2 years of disease, death occurred. At the end, the patient was completely stuporous; she lay in her bed with her legs drawn up under her, and in spite of all precautions she acquired decubitus ulcers.
The autopsy revealed a generally atrophic brain...”
Dr. Alzheimer reported the above almost a century ago and how up-to-date his observations still are! I could hardly wait to share this information with my fellow workers.
Our schedule called for beauty-shop and barber-shop that day. This was a red-letter holiday each week, especially for the ladies. They loved to sit and take in the familiar sight and smell of the beautyshop, they would look at magazines and feel happy and important. The beautician was a very pretty lady with a wonderful sense of humor and a special God-given talent to make everyone in her care feel special. She would do many little things not called for in her contract that most certainly “made the day” for our ladies, like trying on new colors of lipstick and nailpolish. She helped them to put on their own makeup and gave them shower-caps they could use to protect their hairdo. She always found the person under the disease. Even Ann leaped for joy in her wheelchair when she saw her beautiful red hair and friendly smile. I left our residents with one nursing assistant in our beautician’s capable hands and used this “free” time to share today’s new information with the rest of our staff on this side of the house.
THE ILLNESS AND ITS STAGES
Early every morning as I entered my little kingdom — the small wing of the nursing home where I managed to collect my twenty unwanted residents — I had only to stop for a few seconds and listen to know what kind of night they had all experienced. I had learned long ago to listen with all my senses: sight, smell, hearing, touch and the unsung, but very special sense of caregivers, — mothers, nurses, spouses or important others — that seems to be aware of their charges’ condition even if they are not present. This is how a typical morning went:
First I heard rhythmical claps accompanied by an equally strong voice announcing in the same rhythm: “We are hung-ry, we - want - to - eat”, repeated endlessly.
I can still picture the round, pink cheeks of a stout little lady, Georgette, who sang out these words. She was in her eighties, but no line on her smooth face, nor her energetic comings and goings round about her room would have betrayed this fact. Her internal clock has set aside about every three hours while awake as eating time: Thanks to her high activity level, her nights were spent in peaceful sleep from eight at night until the first rays of sun awakened her. I am sure her background as a farmer’s child and later as a farmer’s wife instilled in her this “early to bed, early to rise” routine, which was carried over into the realms of Alzheimer’s disease, where many of her talents became part of an unknown world. Part of her speech she retained was words related to eating, to procreation and her favorite song, “God Bless America." She used these words as her needs and mood dictated it. Words related to food and eating were used appropriately when she was hungry. She sang “God Bless America” when the sun shone, her tummy was full, and the world looked all right to her. Four-letter words about procreation filled in the gaps, as she slipped from complacency toward anger and resistance. If for example a well meaning nurse awakened her from her best slumber to take her to the bathroom and then asked her if she wanted a sleeping pill Georgette would react very negatively. Since she could not tell, in so many nice words, that she did not have to be awakened to go to the bathroom and that she was embarrassed by not understanding that word “sleeping pill” meant, she used the only alternative in her vocabulary, and I must confess, quite effectively. No one who ever encountered her under similar circumstances would awaken her again.
I knew as soon as I heard that morning clapping and chanting that Georgette was sitting in front of a large, square table with green formica top. As I learned from her daughter this type of formica covering was used in her home for the counter-tops and kitchen table. This made her feel at home and she never wanted to stray far from her “kitchen”.
Across the table sat her roommate of similar age. Her retained vocabulary consisted of a “Yea”, which she modulated endlessly to fit her mood. Her little profile reminded me of the moon-crescent faces children draw in kindergarten. Right now her toothless mouth formed her “Yea” with great enthusiasm at every downbeat of her roommate’s “we want to eat” chant. As they heard the distant clatter of breakfast dishes and smelled the aroma of coffee approaching their “kitchen”, Georgette switched to “God Bless America”, and her roommate, Mary, helped her carry the tune. The two had moved along on the wings of harmony, always in accord with one another’s moods and action, since they became roommates. They were all right, I knew even from a distance.
The door halfway down the corridor opened and Dan came strolling out with long, steady gait toward the drinking fountain. Ever since he had been freed from his “turtle-shell”, he had began to dress impeccably, as he did in his executive days. As a matter of fact he had become an executive all over again. After a few sips of water he came back to the desk, picked up some papers, a pen, and a ruler, and faced me with a smile.
“Everything is in order”, I report.
He nodded, and proceeded down the corridor, inspecting the rooms. Then he returned, put down the symbols of his office, picked up the morning paper, and sat down in the dining room that was reserved only for “my” people. I knew that he was probably holding the paper upside down, since he had tucked the meaning of letters long ago into the deeper recesses of his memory. But the smell of fresh ink on a paper slightly moist from the morning dew and the leisurely waiting for breakfast brought back all the nice feelings of his old vacations and started the day out in a jolly mood.
His roommate soon emerged. Fred was a sight to remember forever. He was tall and skinny, with bright blue eyes and a full head of tight curls crowning his seventy year-old head. He always wore a gleaming white shirt with cufflinks, a suit jacket of some shiny material, and a most outlandish tie with bold design. Underneath he had on only his shorts, from which incredibly thin, spindly and hairy legs emerged. One of his feet was covered with only a sock, the other with a shoe, over which he managed to pull his other sock. He was verbal and — as always — very polite. Fred asked about everyone’s well being, chatted about the weather, and commented on ladies’ attire, which was his specialty. He even asked us if we were not tired of wearing white forever and suggested the use of more color to complement our beauty. You could not help but love this mild mannered, soft spoken gentleman, who remained a gentleman to the end.
The clip-clap of medium heeled shoes approached and passed me. A lady with very youthful features, a slim, well-exercised body and flowing motion of arms were tell-tale signs of a healthy, young body. Ella had arrived recently on the unit. She had a successful real estate company while she herself lived in a fashionable condominium. Neighbors became concerned about her when she began to approach them with fists full of hundred dollar bills, making little or no sense at all as to what she would like, even though words poured unceasingly from a sweet, but slightly business-like smile. It was as if someone was pouring random words from a bucket, with seemingly no connection in content or structure. After her spending sprees she began to wander on the condominium corridors in the middle of the night, pounding on doors, looking very frightened and lost. The condominium community — very good naturedly — helped her for months, hoping she would “snap out of it”, whatever this ‘it” may be. As things started to take an obvious turn for the worse, they notified her physician and on the same day this lovely, forty-three-year-old lady became a member of our community. I guided her toward the dining room, so she could join the others in the early morning coffee and donut party.
Fleetingly, I saw a gentleman pass the door, with his beloved straw hat on his head. I knew from experience that this “hat-on” situation spelled trouble if we could not nip it in the bud.
“Doctor”, I called after him. “Let’s have a cup of coffee before you go”.
“Will you have one with me?”, he asked with the twinkle in his eye that had probably drawn quite a few coffee partners in his life.
“Sure...”, I said, while I managed to sneak the hat away from him, and hid it from sight. The first battle of the day was won.
Doc was still in his “practicing” age, when his wife and daughter discovered his slight forgetfulness. He eventually deteriorated to such an extent that he forgot who his wife and daughter were. He knew they were beautiful and that he liked to be in their company, but every few minutes he posed the question: “Who are you?” to them. His office had to be closed, and since it was near our nursing home, he entered there. He enjoyed a lot of one-to-one conversations. He was alert enough on occasion to realize his profound intellectual loss.
“What is becoming of me?” he asked.
“I planned to retire in a few years and then travel. I always wanted to travel. And now I don’t even have money to pay for our coffee...” With these words, he turned his pockets inside out to demonstrate how empty he felt. Lost. Helpless. The only key to freedom he retained was his straw hat. He never went outside without it, and never thought of leaving unless he caught sight of it. Once he had his hat on, nothing could stand in his way. He was strong and could push several people aside with one shove while heading toward the door. We learned not to stand in his way. We just followed him out the door, into the street, and around the block, which route eventually brought him back to the home. At this point he was tired enough to accept a helping hand.
“Not all good things need money”, I said. “How about a little golf? We will ask Ella, too. OK?”
His eyes lit up, as he left with Ella and me through the back door, which led to a small piece of green lawn fenced on three sides and dotted with shade trees and bushes. This was our golf course, where both of them continued to practice their old hobby. It was a safe enough place, except for the one open side of the yard, which led to the loading dock and the street.
“I will have to request a fence with a door again”, I thought. “Perhaps I should do it myself, to have it done in this season. Last summer went by, and it is summer again, and we still don’t have a place where the two can go out independently and safely. A piece of a ten foot fence would open up a world of freedom to them, and save many nursing hours that could be spent a lot better. Well, there is always hope...”
Ella’s roommate was Ottilia, a lovely lady, wife to a successful artist. She did not have any children and lived a very protected life. This was the first time that she was away from her husband, which was harder on him than her. She did not remember who he was, and sometimes viewed him with suspicion, and fled the room as he entered. Doc’s presence became a familiar and comfortable sight to her and she attached herself to him. Doc liked the company of pretty women and was happy about this turn of events. Since Ottilia was nonverbal, they used to wander hand in hand on the corridor endlessly. Ella watched these excursions with jealousy, but never interfered. Ottilia on the other hand never wanted to take up golf. There was a comfortable friendship between the three of them, with set routines and set roles.
I checked Ann. She was still asleep and looked comfortable, so I proceeded toward her roommate.
Edyth was awake, but sheepishly she pretended to be still asleep.
“Rise and shine”, I patted a well rounded part of her blanket. “Time to get up!”
“Do I have to go to school today?, she asked with marked anxiety in her voice.
“No, it’s vacation time, beginning today”, I said.
“Oh!...” she exclaimed. “Oh!...”, and happily threw back her blanket. I laid out her clothes and she started to get up to get dressed. In no time she managed to put her head and two arms into the openings of her panty and was now stuck.
“Help teacher”, she begged, and kicked me as I approached.
“Now I understand her feelings about school”, I thought to myself, “and there must be a teacher somewhere who shares her feelings, for similar reasons... and mine too, right now...” Finally we managed to get her dressed, and into the dining room. By now the others also arrived, and we all settled down for coffee and to sense “the mood of the day”, which would determine our activities, for the next twelve hours.
“Good morning”, I heard a familiar voice. “May I have a cup of coffee too?”
Dr. Mac our medical director had stopped by for one of his impromptu visits since he was in the neighborhood anyway.
“How is Ann doing?”
His interest had been aroused by Ann’s case. I knew he must have found some interesting facts about Alzheimer’s disease he wanted to share over coffee.
“Ann is all right, in her own little world. Only I wish I knew what this private world of hers incorporates”, I said. “Sometimes I think she knows everything, has an opinion about everything, but lacks the instrument to express herself, save for her eyes and facial expression. I’ve learned to read some of the things she says in this special way of hers. Actually I know a lot about her.”
“What do you know?”, he asked. I was sure the results of her last brain scan were in his mind and the evaluating physician’s expressed opinion that there was ‘nothing between this lady’s two ears...” a not too kind medical slang which I detested more and more with each passing year.
“Let me see...” I began to gather my thoughts. “I know that she hates to be in the dark at night, and a little nightlight brings her comfort and sound sleep. She hates to feel alone and she enjoys to see people going about their business. Even though she likes human companionship, she does not like to be ‘fussed about’. She expresses her annoyance with a funny little frown and an impatient motion of her hands, which in turn translates into a full-body jerk, the intensity of which shows me the extent of her frustration. She is a very proper lady. She will not touch her breakfast unless she is bathed and her hair is done: she will clamp her teeth, and if someone did not know this habit of hers, he might start her on tube feedings. She enjoys eating, but her food has to look appetizing. An uninteresting looking tray of soft food will never do for her. She hates spinach and green peas and loves pies, especially a la mode. She makes the funniest face when she sees spinach and we both laugh. She has a terrific sense of humor. She loves to watch comedies on TV, especially Jerry Lewis. She also listens to jokes, where the explanation is not too long, and laughs with gusto. She loves her husband, but his overprotective attitude annoys her at times: on such occasions she closes her eyes and smiles, as if to say: ‘I am OK, you can go now’. She is worried about her son, and I believe she feels guilty in some way, because he has Down’s syndrome. She is very tense each time he comes, and appreciates a hug and reassurance after he leaves. She loves to go outdoors and look at the flowers and the sky. She loves birds. One day a robin came quite close to her wheelchair: her face was gleaming with joy. I think I’ll bring a birdfeeder for the winter I added as a quiet afterthought. I hope she will still be with us”.
The physician looked at me earnestly. I knew what he was thinking: life, glorious as it may be, is not always the best hope...
“She still has so much joy out of life” I exclaimed.
“I learned a lot about Ann” he said. “Be sure to include her communication and that of the others also in their charts and make it a permanent record.”
He stopped at each table and had a few words with each of the residents, who visibly appreciated his attention. I followed him to the door. He handed me a sheet of paper.
“You know, Dr. Alzheimer did a terrific study on his patients. I still don’t know why we did not pay more attention to him, and why there are so many cases all of a sudden now. I am sure all of your patients have Alzheimer’s, all of the probably in the middle of the advanced stage, except for Ann. She is rapidly approaching the end. Anyway, I changed all the diagnoses to Alzheimer’s,” he said. “It would be good to get an autopsy permit from the family and see what exactly is going on there...”
“I can try”, I said. “But how can I put even more burden on her family with this decision? They are frightened, and guilty and helpless, as it is...”
“It will benefit them, and many others some day”, he said and left. I looked at the paper. It was Dr. Alzheimer’s description of this strange disease as it appeared in translation in the Arch Neurol. — Vol. 21, July 1969, page 109. The original article was printed in 1907 in Germany with the title “On a Peculiar Disease of the Cerebral Cortex”. The excerpt of the article that Dr. Mac brought in read as follows:
“Clinically the patient presented such an unusual picture that the case could not be categorized under any of the known diseases. Anatomically the findings were different from all other known disease processes.
A woman, 51 years old, showed jealousy toward her husband as the first noticeable sign of the disease. Soon a rapidly increasing loss of memory could be noticed. She could not find her way around in her own apartment. She carried objects back and forth and hid them. At times she would think that someone wanted to kill her and would begin shrieking loudly.
In the institution her entire behavior bore the stamp of utter perplexity. She was totally disoriented to time and place. Occasionally she stated that she could not understand and did not know her way around. At times she greeted the doctor like a visitor, and excused herself for not having finished her work; at times she shrieked loudly that he wanted to cut her, or she repulsed him with indignation, saying that she feared from him something against her chastity. Periodically she was totally delirious, dragged her bedding around, called her husband and her daughter, and seemed to have auditory hallucinations. Frequently, she shrieked with a dreadful voice for many hours.
Because of her inability to comprehend the situation, she always cried out loudly as soon as someone tried to examine her. Only through repeated attempts was it possible finally to ascertain anything.
Her ability to remember was severely disturbed. If one pointed to objects, she named most of them correctly, but immediately afterwards she would forget everything again. When reading, she went from one line into another, reading the letters or reading with a senseless emphasis. When writing, she repeated individual syllables several times, left out others, and quickly became stranded. When talking, she frequently used perplexing phrases and some paraphrastic expressions: milk-pourer instead of cup. Sometimes one noticed her getting stuck. Some questions she obviously did not comprehend. She seemed no longer to understand the use of some objects. Her gait was not impaired. She could use both hands equally well. Her patellar reflexes were present. Her pupils reacted. Somewhat rigid radial arteries: no enlargement or cardiac dullness; no albumin.
During the subsequent course, the phenomena that were interpreted as focal symptoms were at times more noticeable and at times less noticeable. But always they were only slight. The generalized dementia progressed however. After 4 1/2 years of disease, death occurred. At the end, the patient was completely stuporous; she lay in her bed with her legs drawn up under her, and in spite of all precautions she acquired decubitus ulcers.
The autopsy revealed a generally atrophic brain...”
Dr. Alzheimer reported the above almost a century ago and how up-to-date his observations still are! I could hardly wait to share this information with my fellow workers.
Our schedule called for beauty-shop and barber-shop that day. This was a red-letter holiday each week, especially for the ladies. They loved to sit and take in the familiar sight and smell of the beautyshop, they would look at magazines and feel happy and important. The beautician was a very pretty lady with a wonderful sense of humor and a special God-given talent to make everyone in her care feel special. She would do many little things not called for in her contract that most certainly “made the day” for our ladies, like trying on new colors of lipstick and nailpolish. She helped them to put on their own makeup and gave them shower-caps they could use to protect their hairdo. She always found the person under the disease. Even Ann leaped for joy in her wheelchair when she saw her beautiful red hair and friendly smile. I left our residents with one nursing assistant in our beautician’s capable hands and used this “free” time to share today’s new information with the rest of our staff on this side of the house.
CHAPTER III
THE HEALTH TEAM
God works in mysterious ways, and is always a few steps ahead of our comprehension. Looking back, He arranged a staff for this would be Alzheimer’s unit that was absolutely perfect in every way.
There was a licensed practical nurse, who recently had come over from Canada. Her nursing skills were impeccable, but even more so, her love for her patients was unmistakable. Her arms were always open for a hug, and she was always ready to walk an extra mile to make someone feel good. She could be strict at times and lovingly set limits, too, when it benefited one of the residents. She eagerly supported the ban on restraints. She knew when to sit down with someone for a little reassurance, whether it was a resident or a family member. She loved her patients to look “like a million dollars’, always immaculately clean. She would take time for endless toileting, so we were able to get rid of all the incontinent devices of the day. And the residents responded with a tremendous change in attitude as they were able to settle into this feeling of rediscovered human dignity.
The afternoon nurse was a beautiful lady. Even her name brought the sun out from behind the clouds: Flora Bell. She was a bit on the heavy side in her appearance, like some people who love to enjoy life and know that a thin figure is not always the road to happiness. Her uniform was always immaculately white, but her little cone shaped cap always seemed to have leaped to the side, only to be gladly abandoned to one of the inquisitive residents. She had worked in pediatrics in her younger years.
“ God never created anything as beautiful as babies,” she used to say. “We need some babies in this place to cheer these poor dears!”
She sat with the residents, she loved them, she tucked them in for the night, she sang to them. She was wonderful. Nobody knew her exact age. She kept pace with Jack Benny’s thirty-nine. Later, when she became closer friends, she talked about old family memories. She said that her parents had been born into slavery and that she was one of the first black nurses in this country.
There was one nursing assistant who was the answer to any nurse’s prayers. Highly intelligent, well educated, and with a tremendous capacity of walking in someone else’s moccasins. She was able to understand the words and needs of the most afflicted, even when no one else could. She was trained in rehabilitation, and took great care in preventing immobility and its related problems. She worked conscientiously on Ann’s contracted little extremities from the day of her arrival, and with success. After a couple of months’ exercise, her limbs began to loosen and activities became less painful. Without instructions she found the proper wheelchair for her, asked her husband what kind of clothes to buy for her, making him again an active part of her care. She managed to give excellent nursing care and fill both a rehabilitation nurse’s shoes, and that of activities. Her enthusiasm carried over to the others and gave rise to a friendly competition who can do more for the residents?
Another nursing assistant was young and pretty and always brought a joke or happy giggle with her. The residents affectionately called her “The Kid”, and felt very protective about her, as if she had been their own child. There was an outpouring of love and a sense of happiness around her.
Barbara was the athletic type. She could have moved stones to become active in her exercise class, even in those pre-aerobic, pre-jogging days. She loved to walk everyone around the block for a sniff of fresh air, even on winter days. And residents responded to her efforts with a wonderful appetite and a good night’s rest. On some lazier days, when they saw her approaching, they sometimes exclaimed: “Oh-oh...!”, meaning probably, “Here comes trouble... and exercise...!” But they went with her for a walk anyway. On rainy days she would say: “We sure could use a dog around here and we could play ‘Fetch’, and teach him to jump through hoops and things. We need more life in here!”
Bea was quiet and busy all day. She loved wrinklefree bed covers and open windows. She did not mind when residents “helped” her make beds and that she had to redo them several times after their efforts, yet she never did these corrections in front of them, so as not to humiliate them. She was an excellent companion and listener.
Bea, the Kid and “Canada”, and I settled down to read Dr. Alzheimer’s findings about the strange, new disease, which turned people “senile” before their time. Just as we were about to begin, Doc’s wife arrived with some clean clothes.
“What are you doing, sitting around in the middle of the morning”, she jested. When she learned about the paper she asked if she could join us. As we read each observation of Dr. Alzheimer, the words took on new meaning as we recognized in each carefully documented case a person, an attitude, an attribute of one of our residents. The excitement of new discovery swept through the little group. We decided to carefully document the course and progression of each of our residents, trying to find out in each individual’s case what made him or her “tick”, so we might be able to respond to unexpressed needs, making their life a bit more independent, dignified, enjoyable.
“If there are twenty Alzheimer’s residents just here, in this small nursing home, how many more may there be in this town, in the country!”, Doc’s wife, May exclaimed. “Are there any support groups for this?” As she heard that the answer was “no” to the second part of her question, she stood up like an amazon ready for battle:
“There will be one now!”, she said. “And we will conquer this disease!”
Soon she placed ads in the local papers and opened her home for group meetings about this strange, old, but now very new disease, which seemed to conquer with increasing strength all segments of our population. She made careful notes of the combined observations of her support group. These observations corresponded in certain aspects remarkably not only with one another, but also with Dr. Alzheimer’s findings. There seemed to be no obvious cause for this illness which inevitably manifested itself in forgetfulness. This loss of memory is so slight in the beginning that outsiders hardly take notice of it. Even though the family, friends, or people at work don’t realize anything out of the ordinary, the patient usually does. He or she feels something is wrong. Car keys get lost more often, names of friends slide into irretrievable oblivion. The patient begins at this point to soul search. “What did go wrong?” He begins to pay more attention to diet, exercise, vitamins, the whole battery of supplements that promise eternal youth. And usually nothing works. One morning the patient wakes up to go to work and never arrives, because in the middle of the usual commuting route he realizes that he is lost. Doc’s case was typical. He forgot that he was supposed to go from his office to the examination room and wandered out for a stroll to the street. Trying to return to familiar grounds he insisted on going into a stranger’s house, where the police picked him up. Luckily the police knew him, since he had been the guardian angel of the community and its medical problems for years. They knew something was wrong and took him in to the hospital. His tests, the results of which he supervised and helped to evaluate, showed a perfectly healthy man, who was probably in need of a little vacation and change of environment. After a week of observation and periods of utter confusion, the medical community decided on a new diagnosis: “senility”, and recommended retirement instead of vacation. This was the first time that Doc, this mild mannered man, became violent. No, there was nothing indicating that his practice should be terminated! He decided to go home as fast as he could. He grabbed his faithful old straw hat and proceeded in his hospital gown down to the lobby and out to the street. He was brought back and sedatives were given. He sat seemingly emotionless for days. He never inquired about his progress, and never recognized his wife from that time on. Although later, when he finally left the hospital and was admitted to our home and began to feel better — even considering his stay some kind of a vacation — he sometimes very actively flirted with her.
“If it were not so sad, I think I would be really flattered” May said. “I think he would still marry me, all over again”, and she turned away for a moment to hide her tears. “What beautiful plans we had for his retirement age! We wanted to go around the world on a cruise and stay in Hawaii for a year or so. You know, to have a honeymoon! We never could afford one while we were young!”
Almost identical stories emerged from this early support group. Forgetfulness, change of personality, ever deepening confusion, restlessness, especially in the evening hours. Later “sundowning” became the fashionable word for this latter symptom.
There were families who could not afford a nursing home and had to keep a job. The afflicted family member was watched over for the working hours. But for the caregivers, hundreds of sleep deprived nights — when they did not dare fall asleep, so their spouse would not harm himself, or wander out of the house — took their toll. Often the well spouse had to be hospitalized with a heart attack or total exhaustion, while the Alzheimer’s person went on strong. And there was no help in sight in those days. Witnessing untold hours of loving self sacrifice spent in the care of an afflicted person reconfirmed our belief in the basic goodness of humanity, as we saw these cases through the years.
The nursing staff had began to do its homework. Methods of observation and nursing care began to change little by little. We found that most methods, which have been the backbone of nursing practice since Florence Nightingale, had to give way to new and more effective approaches. The majority of the nurses, who worked in other parts of the house and were happy to have passed on the “troublemakers” to us, were too busy to become involved in our new approaches.
“Do what you want. Just keep ‘them’ out of our way” they frequently said.
Dr. Mac was of great value. He was an excellent listener with a lot of patience. That supposedly comes with age, but his mind was young enough to take a very active part in trying to find out as much as possible about this “new” disease.
Pretty soon there appeared two classes of caregivers. The “initiated” ones versus the “uninitiated”, who resisted vehemently having anything to do with “our” kind of nursing. To their minds, when a resident was restless, putting on the restraints and using immobilizing “geri-chairs” was the answer. When a well-meaning family member attempted to share years of accumulated experience as to how to care for the spouse, they let the information slip by and get lost behind the smug, know it-all smile of “professionals”. It was an uphill struggle to establish a new kind of nursing practice, a new type of charting. The ever-so-essential records of communication and behavior constantly fell by the wayside when our team was not on hand.
I remember quiet confrontations between nursing assistants, who were by then skilled Alzheimer’s caregivers and some of the “uninitiated” nurses, who insisted on using restraints and that residents go to bed at nine o’clock in the evening, even if they had to be tied into the bed “to help them relax”. When our nursing assistants suggested a walk, or a warm cup of milk instead, the frequent answer was: “This is a nursing home, an institution, not a luxury hotel. There has to be order.” It was hard to explain that there is the greatest order in any Alzheimer’s unit when there is no apparent order. When two residents play golf before breakfast, and some residents run around munching a sandwich at lunch, when nurses play doll on the floor with an eighty year old lady and help do the “homework” of a retired business lady, and when all these activities keep on going side-by side, day in and day out, that is order, as long as it keeps the residents happy.
It was even more unimaginable to these nurses to — horribile dictu! — abandon their sacred nursing desk in order to give room to the executive actions of Dan every morning. His taking the paper, pen, and ruler usually merited a heavy confrontation and ended in restraints. After my day off, the unit showed all the signs of prolonged stress, which took days to correct.
It took years of explanation and example and the attention of the public through the good works of the Alzheimer’s Association and the media, before nurses became slowly interested in it.
THE HEALTH TEAM
God works in mysterious ways, and is always a few steps ahead of our comprehension. Looking back, He arranged a staff for this would be Alzheimer’s unit that was absolutely perfect in every way.
There was a licensed practical nurse, who recently had come over from Canada. Her nursing skills were impeccable, but even more so, her love for her patients was unmistakable. Her arms were always open for a hug, and she was always ready to walk an extra mile to make someone feel good. She could be strict at times and lovingly set limits, too, when it benefited one of the residents. She eagerly supported the ban on restraints. She knew when to sit down with someone for a little reassurance, whether it was a resident or a family member. She loved her patients to look “like a million dollars’, always immaculately clean. She would take time for endless toileting, so we were able to get rid of all the incontinent devices of the day. And the residents responded with a tremendous change in attitude as they were able to settle into this feeling of rediscovered human dignity.
The afternoon nurse was a beautiful lady. Even her name brought the sun out from behind the clouds: Flora Bell. She was a bit on the heavy side in her appearance, like some people who love to enjoy life and know that a thin figure is not always the road to happiness. Her uniform was always immaculately white, but her little cone shaped cap always seemed to have leaped to the side, only to be gladly abandoned to one of the inquisitive residents. She had worked in pediatrics in her younger years.
“ God never created anything as beautiful as babies,” she used to say. “We need some babies in this place to cheer these poor dears!”
She sat with the residents, she loved them, she tucked them in for the night, she sang to them. She was wonderful. Nobody knew her exact age. She kept pace with Jack Benny’s thirty-nine. Later, when she became closer friends, she talked about old family memories. She said that her parents had been born into slavery and that she was one of the first black nurses in this country.
There was one nursing assistant who was the answer to any nurse’s prayers. Highly intelligent, well educated, and with a tremendous capacity of walking in someone else’s moccasins. She was able to understand the words and needs of the most afflicted, even when no one else could. She was trained in rehabilitation, and took great care in preventing immobility and its related problems. She worked conscientiously on Ann’s contracted little extremities from the day of her arrival, and with success. After a couple of months’ exercise, her limbs began to loosen and activities became less painful. Without instructions she found the proper wheelchair for her, asked her husband what kind of clothes to buy for her, making him again an active part of her care. She managed to give excellent nursing care and fill both a rehabilitation nurse’s shoes, and that of activities. Her enthusiasm carried over to the others and gave rise to a friendly competition who can do more for the residents?
Another nursing assistant was young and pretty and always brought a joke or happy giggle with her. The residents affectionately called her “The Kid”, and felt very protective about her, as if she had been their own child. There was an outpouring of love and a sense of happiness around her.
Barbara was the athletic type. She could have moved stones to become active in her exercise class, even in those pre-aerobic, pre-jogging days. She loved to walk everyone around the block for a sniff of fresh air, even on winter days. And residents responded to her efforts with a wonderful appetite and a good night’s rest. On some lazier days, when they saw her approaching, they sometimes exclaimed: “Oh-oh...!”, meaning probably, “Here comes trouble... and exercise...!” But they went with her for a walk anyway. On rainy days she would say: “We sure could use a dog around here and we could play ‘Fetch’, and teach him to jump through hoops and things. We need more life in here!”
Bea was quiet and busy all day. She loved wrinklefree bed covers and open windows. She did not mind when residents “helped” her make beds and that she had to redo them several times after their efforts, yet she never did these corrections in front of them, so as not to humiliate them. She was an excellent companion and listener.
Bea, the Kid and “Canada”, and I settled down to read Dr. Alzheimer’s findings about the strange, new disease, which turned people “senile” before their time. Just as we were about to begin, Doc’s wife arrived with some clean clothes.
“What are you doing, sitting around in the middle of the morning”, she jested. When she learned about the paper she asked if she could join us. As we read each observation of Dr. Alzheimer, the words took on new meaning as we recognized in each carefully documented case a person, an attitude, an attribute of one of our residents. The excitement of new discovery swept through the little group. We decided to carefully document the course and progression of each of our residents, trying to find out in each individual’s case what made him or her “tick”, so we might be able to respond to unexpressed needs, making their life a bit more independent, dignified, enjoyable.
“If there are twenty Alzheimer’s residents just here, in this small nursing home, how many more may there be in this town, in the country!”, Doc’s wife, May exclaimed. “Are there any support groups for this?” As she heard that the answer was “no” to the second part of her question, she stood up like an amazon ready for battle:
“There will be one now!”, she said. “And we will conquer this disease!”
Soon she placed ads in the local papers and opened her home for group meetings about this strange, old, but now very new disease, which seemed to conquer with increasing strength all segments of our population. She made careful notes of the combined observations of her support group. These observations corresponded in certain aspects remarkably not only with one another, but also with Dr. Alzheimer’s findings. There seemed to be no obvious cause for this illness which inevitably manifested itself in forgetfulness. This loss of memory is so slight in the beginning that outsiders hardly take notice of it. Even though the family, friends, or people at work don’t realize anything out of the ordinary, the patient usually does. He or she feels something is wrong. Car keys get lost more often, names of friends slide into irretrievable oblivion. The patient begins at this point to soul search. “What did go wrong?” He begins to pay more attention to diet, exercise, vitamins, the whole battery of supplements that promise eternal youth. And usually nothing works. One morning the patient wakes up to go to work and never arrives, because in the middle of the usual commuting route he realizes that he is lost. Doc’s case was typical. He forgot that he was supposed to go from his office to the examination room and wandered out for a stroll to the street. Trying to return to familiar grounds he insisted on going into a stranger’s house, where the police picked him up. Luckily the police knew him, since he had been the guardian angel of the community and its medical problems for years. They knew something was wrong and took him in to the hospital. His tests, the results of which he supervised and helped to evaluate, showed a perfectly healthy man, who was probably in need of a little vacation and change of environment. After a week of observation and periods of utter confusion, the medical community decided on a new diagnosis: “senility”, and recommended retirement instead of vacation. This was the first time that Doc, this mild mannered man, became violent. No, there was nothing indicating that his practice should be terminated! He decided to go home as fast as he could. He grabbed his faithful old straw hat and proceeded in his hospital gown down to the lobby and out to the street. He was brought back and sedatives were given. He sat seemingly emotionless for days. He never inquired about his progress, and never recognized his wife from that time on. Although later, when he finally left the hospital and was admitted to our home and began to feel better — even considering his stay some kind of a vacation — he sometimes very actively flirted with her.
“If it were not so sad, I think I would be really flattered” May said. “I think he would still marry me, all over again”, and she turned away for a moment to hide her tears. “What beautiful plans we had for his retirement age! We wanted to go around the world on a cruise and stay in Hawaii for a year or so. You know, to have a honeymoon! We never could afford one while we were young!”
Almost identical stories emerged from this early support group. Forgetfulness, change of personality, ever deepening confusion, restlessness, especially in the evening hours. Later “sundowning” became the fashionable word for this latter symptom.
There were families who could not afford a nursing home and had to keep a job. The afflicted family member was watched over for the working hours. But for the caregivers, hundreds of sleep deprived nights — when they did not dare fall asleep, so their spouse would not harm himself, or wander out of the house — took their toll. Often the well spouse had to be hospitalized with a heart attack or total exhaustion, while the Alzheimer’s person went on strong. And there was no help in sight in those days. Witnessing untold hours of loving self sacrifice spent in the care of an afflicted person reconfirmed our belief in the basic goodness of humanity, as we saw these cases through the years.
The nursing staff had began to do its homework. Methods of observation and nursing care began to change little by little. We found that most methods, which have been the backbone of nursing practice since Florence Nightingale, had to give way to new and more effective approaches. The majority of the nurses, who worked in other parts of the house and were happy to have passed on the “troublemakers” to us, were too busy to become involved in our new approaches.
“Do what you want. Just keep ‘them’ out of our way” they frequently said.
Dr. Mac was of great value. He was an excellent listener with a lot of patience. That supposedly comes with age, but his mind was young enough to take a very active part in trying to find out as much as possible about this “new” disease.
Pretty soon there appeared two classes of caregivers. The “initiated” ones versus the “uninitiated”, who resisted vehemently having anything to do with “our” kind of nursing. To their minds, when a resident was restless, putting on the restraints and using immobilizing “geri-chairs” was the answer. When a well-meaning family member attempted to share years of accumulated experience as to how to care for the spouse, they let the information slip by and get lost behind the smug, know it-all smile of “professionals”. It was an uphill struggle to establish a new kind of nursing practice, a new type of charting. The ever-so-essential records of communication and behavior constantly fell by the wayside when our team was not on hand.
I remember quiet confrontations between nursing assistants, who were by then skilled Alzheimer’s caregivers and some of the “uninitiated” nurses, who insisted on using restraints and that residents go to bed at nine o’clock in the evening, even if they had to be tied into the bed “to help them relax”. When our nursing assistants suggested a walk, or a warm cup of milk instead, the frequent answer was: “This is a nursing home, an institution, not a luxury hotel. There has to be order.” It was hard to explain that there is the greatest order in any Alzheimer’s unit when there is no apparent order. When two residents play golf before breakfast, and some residents run around munching a sandwich at lunch, when nurses play doll on the floor with an eighty year old lady and help do the “homework” of a retired business lady, and when all these activities keep on going side-by side, day in and day out, that is order, as long as it keeps the residents happy.
It was even more unimaginable to these nurses to — horribile dictu! — abandon their sacred nursing desk in order to give room to the executive actions of Dan every morning. His taking the paper, pen, and ruler usually merited a heavy confrontation and ended in restraints. After my day off, the unit showed all the signs of prolonged stress, which took days to correct.
It took years of explanation and example and the attention of the public through the good works of the Alzheimer’s Association and the media, before nurses became slowly interested in it.
CHAPTER IV
THE MAKINGS OF A HOME
We all like to be at home, and it is a wonderful feeling to arrive there, even after the most satisfying vacation.
With practice, we learned that the needs of Alzheimer’s residents are not different from those of the rest of humanity, except that they have lost the ability to articulate their needs in words and they have regained some of the unmasked honesty of their childhood’s.
During the years of their progressive illness, and even more profound memory loss, they feel bewildered and lost. All their actions reflect their attempt to recover something of themselves, as they used to be. The frequent outcry: I want to go home”, signals their need to find their old world, their old selves. It was interesting to observe the profound influence of mothers, as we were able to perceive their role through our Alzheimer’s residents. As their lives, and memory crumbled to fragments, the last stronghold, it seems to most of them, was some distant memory of their mother. When all else was gone they clung to the old, nurturing presence of their mothers. I heard the call to long gone women in many varieties: Mamma, Mother, Mommy, even by otherwise non-verbal residents. Mother — and never Father — was the last stronghold in their lives. Mother — help! Even Mary managed to abandon her “Yea” on occasions, when the night and loneliness closed in on her and called: “Mamaaa”.
We rediscovered once again that the home means “mother”, before anyone else, has to assume the role of a nurturing mother. It will never do to stop at Mary’s bed and “reality orient” her by telling her that you are not her mother, that you are only a nurse who happens to work here. Mary does not understand all this. She is determined to find her mother so she can cuddle close to her and be protected from darkness. Her mother will make Mary feel good again, and as safe as she was in the womb. The caregiver has to be transformed into Mother, who holds her, pats her cheeks, and whispers to her that she loves her. It is frequently helpful to wear a mild scented cologne, instead of the scent of usual hospital chemicals, and perhaps leave a nicely scented hanky with her to prolong your comforting presence, even after you left.
It does not take an elaborate building to provide a comforting home to these residents. Once you get used to the idea that you are instant mother to twenty people who are at least twice, and frequently three times your age.
Georgette’s green formica “kitchen” table gave us the first hint, that even though these residents’ memory has faded, most of their experiences, feelings are retained and, wisely used, can make their lives — almost — happy again. Georgette must have loved the color green and must have spent her happiest hours in her busy farming life resting at her kitchen table with a cup of coffee. She also must have liked patriotic events, since she expressed joy with “God Bless America!”. She already had her green table. Later we prepared a scrap-book with farm pictures on one side, different parades on the other, with flags fluttering and bands marching. She would look at these pictures for hours. We realized that she was perfectly satisfied and — in her case — it could not have mattered less what furniture we put into her room.
Learning from her example, we started to improvise. Doc’s wall, across his bed, was decorated, with May’s help, in Hawaiian style, complete with palms, oceans, and hulagirls in grass skirts with flowers in their long hair. We asked for some travel folders and when — while looking at them — he started to complain that he did not have any money for travel, he was provided with a canceled checkbook. Later on, as his disease progressed and he was unable to sign and write “checks”, we provided paper playmoney and that, too, kept him happy for a while. Even the staff enjoyed these trip-planning sessions with him. One day he pushed these travel folders aside and said,
“No more...” We knew that there must be something very wrong, even though there were no outward signs and his lab results still showed a healthy man. The same night he suffered a heart attack and left us in a matter of seconds.
Dan got a desk with all the paraphernalia he enjoyed. He made his excursions to the nurses’ station too, but was happy in his own environment. We had to learn by trial and error. Since he had a large family, we put the pictures of children and grandchildren onto the desk, but he either threw them into the wastebasket or hid them in one of his desk-drawers. Obviously he wanted to be remembered as an executive, an important person, and we always gave him this courtesy. Even though he was a friendly person, he never wanted to associate with anyone, except for Dr. Mac, whom he soon spotted and identified as a figure of authority.
The walls of our public areas were painted the then fashionable off-white, with just a hint of blue, with a full-length mirror on one side of the corridor. The wall color had an ideal, neutral, calming effect, but the mirror became constant cause for tension. Residents did not recognize themselves in it and came, always very unexpectedly, face to face with a stranger. Regulations in those days insisted on mirrors, as part of “reality orientation” techniques, and it took many heated discussions until we were permitted to remove it.
We found that in the evening windows acted the same way as a mirror when the shades were not drawn after sunset. I found one day in one of the charts that Fred was “hallucinating” in the evening. I stayed on one night to observe this, since he never hallucinated on our shift. And surely enough, when Fred entered the dining room with the door facing the window, he grabbed my arm in fright, crying, “There is a man there!”, and pulled me back toward the corridor. Just then I realized that he had seen his own reflection in the darkened window... So curtains, drapes became essential in order to avoid similar misunderstandings. We opted again for more old-fashioned designs that corresponded to childhood memories.
The owner decided to carpet the nursing home, rooms and corridors alike, using a nice shade of deep blue. We considered this carpeting God-sent and the greatest asset a night nurse can think of, because it provided slippage-free walking surface for all her wanderers. The carpet also made the gleaming corridors and rooms cozier, more home like. One lady loved to play dolls sitting on the floor, and the carpet provided comfort for her. Before the carpeting was installed, Dan could not tell the difference between the high gloss of the corridor floor and wetness. On especially bright days, he would pull up the legs of his trousers, ready to wade through water.
In order to provide separate living-dining areas for our residents, the owner merged two resident rooms, on each side of the corridor by removing the dividing walls. So it was more an accident, than design, that both the living and the dining room were thus equipped with two bathrooms, a benefit of untold value, which never had found its way into a conscious design. Both rooms also had two doors, side-by-side, leading onto the corridor. When we admitted a restless and very confused lady one day, she spent a good part of the day walking out of the living-room through one door and re-entering from the corridor via the other door. She was happy to be able to walk independently yet safely to her heart’s content this route, which she never recognized as a circle.
The water-fountain in the corridor was a welcome part which every resident was able to use, except for Anna. We realized how much their heightened activities increased not only their caloric needs, but also their need for water. The body’s wisdom steered many of them away from coffee and artificially colored soft drinks toward water. The only exception was a nice home-made, ice-cold lemonade on hot summer days. Occasionally they even volunteered to mind a lemonade stand for their visitors, in exchange for a hug and a kiss.
Little wrought-iron, nicely padded benches brought a welcome rest for constant walkers and attracted several onlookers to our indoor golf, pinball and horseshoe contests.
The nurses’ station was next to the first room, and a door with alarm ended the corridor.
The living room had several comfortable recliners, couches for comfort and cozy corners for visitors. There was a good color TV in a corner, which — contrary to several of today’s opinions — brought relaxation and pleasure to many of the residents. The Lawrence Welk show was always popular and initiated song and dance sessions on quiet winter evenings. Trips to faraway lands on the wings of National Geographic programs were popular and the little fairy at the beginning of the Disney films was greeted with delight, along with Lassie or any of the other animal stars.
The dining room furniture was simple, easy to clean, arranged according to the need and mood of the day, mostly in a restaurant-style, seating compatible table partners at each table. We reserved one large, family type table for residents who needed a lot of help. Official “feeding tables” were never used, since they presupposed an “assembly line” feeding. Even though tables accommodated four people, we always left two empty chairs, to give the much needed distance and elbow room for our residents. These chairs served well our impromptu visitors, and also enabled our staff to sit down and join in for a cup of coffee and a chat.
There were nice shelves for books and art items and stackable baskets for games.
We always wished the bedrooms would be private, with space to move about between the bed and the chair, with a place for a comfortable recliner. Semi-private rooms would be the exception, reserved for people who didn’t like to be alone.
It always struck me that the non-living areas in most nursing homes were bright, spacious, and in rooms that were used for business and only for eight hours a day, five days a week. The living quarters of residents in any nursing home are as small as hospital rooms, which were never designed for long-term habitation and are too small even for the necessary nursing actions, never mind long-term living.
One of my Alzheimer’s residents opened my eyes to viewing nursing-home basic designs differently. Maybe with a mother’s eyes.
“What is this? A hospital or a motel?”, asked Irma, while she was introduced to the unit.
“It is a home”, I ventured.
“No, this is no home” she said, and pointed to the judge and obtrusive nursing station, the first thing in view as one entered the nursing home.
She was right. We needed a foyer, with a coatrack or closet, opening into a living room, a den, and so on, ending finally in a private room.
Once I met a lady, not an Alzheimer’s resident — who recognized her need to enter a nursing home. She was alert, intelligent, one of the first women physicians to graduate from Harvard. All through her life books were her best and frequently her only friends, and she could not live her life without them. But she could not fit a shelf to hold them into her room. So she quietly slipped away to a nicer place in Heaven, where — I am sure — beautiful libraries awaited her. Her grief and short stay started a line of thought which later became more crystallized, as I attempted to make a home out of an institution.
One cannot place people into an environment which is contrary to the normalcy of everyday life and then try to “reality orient” them to reestablish sanity. They want to shun sanity in such a situation, because if they indulge in looking around in this hospital-motel like world in which they have to live their remaining years, they can not bear it.
Later familiarity may smooth the rough edges and feelings, but the whole nursing home experience would be so much easier if home-makers, not businessmen and architects would do the planning. They would notice that the narrow doors do not accommodate wheelchairs too well. That hands are frequently bruised trying to manipulate the wheels through the narrow openings.
Windows would be low enough so sitting in a chair one could see the outside world. Frequently this is the only contact for residents with the “outside,” and high windows prevent even this little pleasure. Windows would be tall and wide to let in all the sunlight; ban all the fluorescent lights, which are turned on constantly, and diminish all shades of transition, between night and day.
The room-outlay would stress width and not length in all double rooms, so the window could be shared by both occupants and both could enter the bathroom without intruding on one-another’s living space. The room would be large enough to provide a private corner of the room for a table, recliner and a good reading lamp.
Beds would be covered with favorite bedcovers brought from home and “hospital corners” would become obsolete.
There would be large, comfortable tables in the rooms one could sit at and play solitaire or invite someone for an afternoon coffee. Bedside tables would be there for bedfast residents.
Lights would be bright, to accommodate diminishing eyesight, and light-switches would not face into the wallpaper.
Call-lights would be one way, and no caregiver would ever enter a room exclusively through the crackling sound of an intercom system, but in person, at all times. This is especially important in case of Alzheimer’s residents. They — in my experience — never grasped the use and meaning of a call light, which dangles from a cord; but I have seen it become outright dangerous. Mary one day managed to wrap it around her neck at night and Ida, the little lady always interested in what time it was, bit through the casing of the cord, all the way down to the live wire. This was her way of passing time. Since Alzheimer’s residents, by the time they enter a nursing home, usually lack judgment, supervision and hands-on interaction has to be as close as one would use with toddlers. Not having call lights could help achieving this goal.
Paging systems would be target-oriented. Universal paging would be used only in case of fire, or other severe emergency. Many a quiet, peaceful afternoon or night was irrevocably ruined when a loud page interrupted quite unnecessarily.
Residents were sitting and watching Lassie quietly one evening when the paging system burst into that quiet mood: “Elaine to the phone, Elaine to the phone...” Moses could not have been more startled and frightened when he heard God’s voice coming from the burning bush then our residents were at this point. They had no idea where the sound was coming from, who it was, or what it meant. They jumped up and started running around like lost little chicks when they see an eagle circling above. Ida got entangled in Fred’s long legs and fell. The call to “Elaine” ended in Ida’s hospitalization with a fractured hip, a terrible waste that could have been avoided with more prudent regulations tailored to the needs of people.
There would be, in any mother’s design, a fenced in back-yard that was accessible without steps, an extension of the living area. A shaded, screened patio would be a bonus on warm summer nights. Nothing enhances a quiet, medication free, good night’s sleep more than sitting outside and looking at the stars, sipping a glass of warm milk, listening to the lovely music of the night: the song of crickets and the occasional chirp of a dreaming bird. There would be trees and flowers for each season, bird feeders and a little pool reflecting the sun. Residents would be permitted to wear bathing suits and dangle their feet into the shallow water. A place for volley-ball and a putting green could make a small yard heaven for an Alzheimer’s resident. Freedom gained through an environment that was designed with a home-like atmosphere and safety in mind, where any resident is able to make an independent decision to go outdoors would mean as much to the Alzheimer’s sufferer as the twenty mile walk through the iron curtain meant for me. Freedom comes in many forms and each person has to be able to perceive it, according to his or her personal limitation. The freedom of decision, or its semblance, — the freedom of action — is one of the first “freedoms” a human being can exercise, and this need remains until our last breath. It should never be violated. A real challenge to the “mothering” type of nursing care is to help residents realize their needs as needs and help them toward a solution.
Alzheimer’s residents are honest and determined people. They are incapable of pretense, thus they live in relative balance with their needs and their fulfillment. This should be so in the case of the so called “good patient” of the general population. These residents never venture an opinion and are always at their cooperating best, fearing hospital-like interventions in this hospital-like setting, and develop stress ulcers within a year. Such fears cannot be alleviated with the old hospital regulated nursing care, in the totally different setting of a nursing home, where the key words should be comfort, dignity, freedom of choice, and love.
THE MAKINGS OF A HOME
We all like to be at home, and it is a wonderful feeling to arrive there, even after the most satisfying vacation.
With practice, we learned that the needs of Alzheimer’s residents are not different from those of the rest of humanity, except that they have lost the ability to articulate their needs in words and they have regained some of the unmasked honesty of their childhood’s.
During the years of their progressive illness, and even more profound memory loss, they feel bewildered and lost. All their actions reflect their attempt to recover something of themselves, as they used to be. The frequent outcry: I want to go home”, signals their need to find their old world, their old selves. It was interesting to observe the profound influence of mothers, as we were able to perceive their role through our Alzheimer’s residents. As their lives, and memory crumbled to fragments, the last stronghold, it seems to most of them, was some distant memory of their mother. When all else was gone they clung to the old, nurturing presence of their mothers. I heard the call to long gone women in many varieties: Mamma, Mother, Mommy, even by otherwise non-verbal residents. Mother — and never Father — was the last stronghold in their lives. Mother — help! Even Mary managed to abandon her “Yea” on occasions, when the night and loneliness closed in on her and called: “Mamaaa”.
We rediscovered once again that the home means “mother”, before anyone else, has to assume the role of a nurturing mother. It will never do to stop at Mary’s bed and “reality orient” her by telling her that you are not her mother, that you are only a nurse who happens to work here. Mary does not understand all this. She is determined to find her mother so she can cuddle close to her and be protected from darkness. Her mother will make Mary feel good again, and as safe as she was in the womb. The caregiver has to be transformed into Mother, who holds her, pats her cheeks, and whispers to her that she loves her. It is frequently helpful to wear a mild scented cologne, instead of the scent of usual hospital chemicals, and perhaps leave a nicely scented hanky with her to prolong your comforting presence, even after you left.
It does not take an elaborate building to provide a comforting home to these residents. Once you get used to the idea that you are instant mother to twenty people who are at least twice, and frequently three times your age.
Georgette’s green formica “kitchen” table gave us the first hint, that even though these residents’ memory has faded, most of their experiences, feelings are retained and, wisely used, can make their lives — almost — happy again. Georgette must have loved the color green and must have spent her happiest hours in her busy farming life resting at her kitchen table with a cup of coffee. She also must have liked patriotic events, since she expressed joy with “God Bless America!”. She already had her green table. Later we prepared a scrap-book with farm pictures on one side, different parades on the other, with flags fluttering and bands marching. She would look at these pictures for hours. We realized that she was perfectly satisfied and — in her case — it could not have mattered less what furniture we put into her room.
Learning from her example, we started to improvise. Doc’s wall, across his bed, was decorated, with May’s help, in Hawaiian style, complete with palms, oceans, and hulagirls in grass skirts with flowers in their long hair. We asked for some travel folders and when — while looking at them — he started to complain that he did not have any money for travel, he was provided with a canceled checkbook. Later on, as his disease progressed and he was unable to sign and write “checks”, we provided paper playmoney and that, too, kept him happy for a while. Even the staff enjoyed these trip-planning sessions with him. One day he pushed these travel folders aside and said,
“No more...” We knew that there must be something very wrong, even though there were no outward signs and his lab results still showed a healthy man. The same night he suffered a heart attack and left us in a matter of seconds.
Dan got a desk with all the paraphernalia he enjoyed. He made his excursions to the nurses’ station too, but was happy in his own environment. We had to learn by trial and error. Since he had a large family, we put the pictures of children and grandchildren onto the desk, but he either threw them into the wastebasket or hid them in one of his desk-drawers. Obviously he wanted to be remembered as an executive, an important person, and we always gave him this courtesy. Even though he was a friendly person, he never wanted to associate with anyone, except for Dr. Mac, whom he soon spotted and identified as a figure of authority.
The walls of our public areas were painted the then fashionable off-white, with just a hint of blue, with a full-length mirror on one side of the corridor. The wall color had an ideal, neutral, calming effect, but the mirror became constant cause for tension. Residents did not recognize themselves in it and came, always very unexpectedly, face to face with a stranger. Regulations in those days insisted on mirrors, as part of “reality orientation” techniques, and it took many heated discussions until we were permitted to remove it.
We found that in the evening windows acted the same way as a mirror when the shades were not drawn after sunset. I found one day in one of the charts that Fred was “hallucinating” in the evening. I stayed on one night to observe this, since he never hallucinated on our shift. And surely enough, when Fred entered the dining room with the door facing the window, he grabbed my arm in fright, crying, “There is a man there!”, and pulled me back toward the corridor. Just then I realized that he had seen his own reflection in the darkened window... So curtains, drapes became essential in order to avoid similar misunderstandings. We opted again for more old-fashioned designs that corresponded to childhood memories.
The owner decided to carpet the nursing home, rooms and corridors alike, using a nice shade of deep blue. We considered this carpeting God-sent and the greatest asset a night nurse can think of, because it provided slippage-free walking surface for all her wanderers. The carpet also made the gleaming corridors and rooms cozier, more home like. One lady loved to play dolls sitting on the floor, and the carpet provided comfort for her. Before the carpeting was installed, Dan could not tell the difference between the high gloss of the corridor floor and wetness. On especially bright days, he would pull up the legs of his trousers, ready to wade through water.
In order to provide separate living-dining areas for our residents, the owner merged two resident rooms, on each side of the corridor by removing the dividing walls. So it was more an accident, than design, that both the living and the dining room were thus equipped with two bathrooms, a benefit of untold value, which never had found its way into a conscious design. Both rooms also had two doors, side-by-side, leading onto the corridor. When we admitted a restless and very confused lady one day, she spent a good part of the day walking out of the living-room through one door and re-entering from the corridor via the other door. She was happy to be able to walk independently yet safely to her heart’s content this route, which she never recognized as a circle.
The water-fountain in the corridor was a welcome part which every resident was able to use, except for Anna. We realized how much their heightened activities increased not only their caloric needs, but also their need for water. The body’s wisdom steered many of them away from coffee and artificially colored soft drinks toward water. The only exception was a nice home-made, ice-cold lemonade on hot summer days. Occasionally they even volunteered to mind a lemonade stand for their visitors, in exchange for a hug and a kiss.
Little wrought-iron, nicely padded benches brought a welcome rest for constant walkers and attracted several onlookers to our indoor golf, pinball and horseshoe contests.
The nurses’ station was next to the first room, and a door with alarm ended the corridor.
The living room had several comfortable recliners, couches for comfort and cozy corners for visitors. There was a good color TV in a corner, which — contrary to several of today’s opinions — brought relaxation and pleasure to many of the residents. The Lawrence Welk show was always popular and initiated song and dance sessions on quiet winter evenings. Trips to faraway lands on the wings of National Geographic programs were popular and the little fairy at the beginning of the Disney films was greeted with delight, along with Lassie or any of the other animal stars.
The dining room furniture was simple, easy to clean, arranged according to the need and mood of the day, mostly in a restaurant-style, seating compatible table partners at each table. We reserved one large, family type table for residents who needed a lot of help. Official “feeding tables” were never used, since they presupposed an “assembly line” feeding. Even though tables accommodated four people, we always left two empty chairs, to give the much needed distance and elbow room for our residents. These chairs served well our impromptu visitors, and also enabled our staff to sit down and join in for a cup of coffee and a chat.
There were nice shelves for books and art items and stackable baskets for games.
We always wished the bedrooms would be private, with space to move about between the bed and the chair, with a place for a comfortable recliner. Semi-private rooms would be the exception, reserved for people who didn’t like to be alone.
It always struck me that the non-living areas in most nursing homes were bright, spacious, and in rooms that were used for business and only for eight hours a day, five days a week. The living quarters of residents in any nursing home are as small as hospital rooms, which were never designed for long-term habitation and are too small even for the necessary nursing actions, never mind long-term living.
One of my Alzheimer’s residents opened my eyes to viewing nursing-home basic designs differently. Maybe with a mother’s eyes.
“What is this? A hospital or a motel?”, asked Irma, while she was introduced to the unit.
“It is a home”, I ventured.
“No, this is no home” she said, and pointed to the judge and obtrusive nursing station, the first thing in view as one entered the nursing home.
She was right. We needed a foyer, with a coatrack or closet, opening into a living room, a den, and so on, ending finally in a private room.
Once I met a lady, not an Alzheimer’s resident — who recognized her need to enter a nursing home. She was alert, intelligent, one of the first women physicians to graduate from Harvard. All through her life books were her best and frequently her only friends, and she could not live her life without them. But she could not fit a shelf to hold them into her room. So she quietly slipped away to a nicer place in Heaven, where — I am sure — beautiful libraries awaited her. Her grief and short stay started a line of thought which later became more crystallized, as I attempted to make a home out of an institution.
One cannot place people into an environment which is contrary to the normalcy of everyday life and then try to “reality orient” them to reestablish sanity. They want to shun sanity in such a situation, because if they indulge in looking around in this hospital-motel like world in which they have to live their remaining years, they can not bear it.
Later familiarity may smooth the rough edges and feelings, but the whole nursing home experience would be so much easier if home-makers, not businessmen and architects would do the planning. They would notice that the narrow doors do not accommodate wheelchairs too well. That hands are frequently bruised trying to manipulate the wheels through the narrow openings.
Windows would be low enough so sitting in a chair one could see the outside world. Frequently this is the only contact for residents with the “outside,” and high windows prevent even this little pleasure. Windows would be tall and wide to let in all the sunlight; ban all the fluorescent lights, which are turned on constantly, and diminish all shades of transition, between night and day.
The room-outlay would stress width and not length in all double rooms, so the window could be shared by both occupants and both could enter the bathroom without intruding on one-another’s living space. The room would be large enough to provide a private corner of the room for a table, recliner and a good reading lamp.
Beds would be covered with favorite bedcovers brought from home and “hospital corners” would become obsolete.
There would be large, comfortable tables in the rooms one could sit at and play solitaire or invite someone for an afternoon coffee. Bedside tables would be there for bedfast residents.
Lights would be bright, to accommodate diminishing eyesight, and light-switches would not face into the wallpaper.
Call-lights would be one way, and no caregiver would ever enter a room exclusively through the crackling sound of an intercom system, but in person, at all times. This is especially important in case of Alzheimer’s residents. They — in my experience — never grasped the use and meaning of a call light, which dangles from a cord; but I have seen it become outright dangerous. Mary one day managed to wrap it around her neck at night and Ida, the little lady always interested in what time it was, bit through the casing of the cord, all the way down to the live wire. This was her way of passing time. Since Alzheimer’s residents, by the time they enter a nursing home, usually lack judgment, supervision and hands-on interaction has to be as close as one would use with toddlers. Not having call lights could help achieving this goal.
Paging systems would be target-oriented. Universal paging would be used only in case of fire, or other severe emergency. Many a quiet, peaceful afternoon or night was irrevocably ruined when a loud page interrupted quite unnecessarily.
Residents were sitting and watching Lassie quietly one evening when the paging system burst into that quiet mood: “Elaine to the phone, Elaine to the phone...” Moses could not have been more startled and frightened when he heard God’s voice coming from the burning bush then our residents were at this point. They had no idea where the sound was coming from, who it was, or what it meant. They jumped up and started running around like lost little chicks when they see an eagle circling above. Ida got entangled in Fred’s long legs and fell. The call to “Elaine” ended in Ida’s hospitalization with a fractured hip, a terrible waste that could have been avoided with more prudent regulations tailored to the needs of people.
There would be, in any mother’s design, a fenced in back-yard that was accessible without steps, an extension of the living area. A shaded, screened patio would be a bonus on warm summer nights. Nothing enhances a quiet, medication free, good night’s sleep more than sitting outside and looking at the stars, sipping a glass of warm milk, listening to the lovely music of the night: the song of crickets and the occasional chirp of a dreaming bird. There would be trees and flowers for each season, bird feeders and a little pool reflecting the sun. Residents would be permitted to wear bathing suits and dangle their feet into the shallow water. A place for volley-ball and a putting green could make a small yard heaven for an Alzheimer’s resident. Freedom gained through an environment that was designed with a home-like atmosphere and safety in mind, where any resident is able to make an independent decision to go outdoors would mean as much to the Alzheimer’s sufferer as the twenty mile walk through the iron curtain meant for me. Freedom comes in many forms and each person has to be able to perceive it, according to his or her personal limitation. The freedom of decision, or its semblance, — the freedom of action — is one of the first “freedoms” a human being can exercise, and this need remains until our last breath. It should never be violated. A real challenge to the “mothering” type of nursing care is to help residents realize their needs as needs and help them toward a solution.
Alzheimer’s residents are honest and determined people. They are incapable of pretense, thus they live in relative balance with their needs and their fulfillment. This should be so in the case of the so called “good patient” of the general population. These residents never venture an opinion and are always at their cooperating best, fearing hospital-like interventions in this hospital-like setting, and develop stress ulcers within a year. Such fears cannot be alleviated with the old hospital regulated nursing care, in the totally different setting of a nursing home, where the key words should be comfort, dignity, freedom of choice, and love.
CHAPTER V
ADMISSION
An Alzheimer’s patient seldom has the freedom of choice in the selection of a nursing home. His or her illness is probably so advanced at the time of admission that the diseased brain is unable to handle and compute even the most commonplace experiences and becomes totally bewildered at the massive onslaught of the sights and sounds of a communal setting. As diagnostic techniques improve and become more available, the afflicted person may fully participate in finding an appropriate nursing home at the early stages of the disease.
Matters of finance, distance from the care-giving family’s home are crucial in the selection process, as is the fact that up until now there are few nursing homes with Alzheimer’s units on hand and if there is one, there is usually a waiting list to be dealt with.
If the family has decided on a particular home and can afford to wait until admission is possible, this time can be well used to acclimatize the patient to the change of residence. If someone takes the patient for a daily walk, maybe with the family dog, instead of going around their own home, they should start walking on the street of the nursing home. The Alzheimer’s person will not remember the street, or other details, but a feeling of familiarity can be established. If the weather is nice, with the nursing home’s cooperation the patient and caregiver may even use the nursing home’s outdoor area for a rest, to instill this feeling of familiarity even more. From there only a few steps lead to their future private quarters.
When the day of admission arrives, a calm atmosphere is of utmost importance. When we admitted Irma, she not only complained of the non-home-like looks of the place, but was totally bewildered, when she saw a narrow little room, with clothes and personal items piled on top of her bed, nurses attacking her with bloodpressure cuffs, and admission related blood tests. She was convinced within the first ten minutes that this was a place where she surely did not want to stay, and started running away, setting off the alarm system. She was brought back from the door and placed into restraints by a nurse unfamiliar with Alzheimer’s care. The alarm alerted all the other residents, who also piled around the door and followed Irma and now stood around her, also looking frightened and helpless at the sight of restraints.
This disaster prompted the staff to develop a more workable admission process. I like to use the word “process” instead of “policy.” The process is flexible and all kinds of little freedoms can be tucked into it.
We ask the family to take their charge to their physician three or four days prior to admission for all the required tests and a physical, so needles and other unpleasant things won’t be the first on anyone’s agenda upon entering the nursing home. Alzheimer’s peoples’ recent memory is highly impaired or even seemingly non existent, yet they can remember persons and events that caused either a lot of happiness, or a high level of distress. Some Alzheimer’s residents never forgot the first blood test, nor the nurse who administered it, and for this reason she could never establish a level of trust with those residents.
We also ask families to bring in all the clothes and personal belongings at least a day ahead of admission, so that the clothes can be marked and placed into the closet, and when the resident arrives the next day the room looks organized, clean and inviting. Loved, familiar objects decorate the dresser, the table, so the change from home to the nursing home would be hardly noticeable. Even though television can serve a good purpose and used as part of their daily life, personal television sets in their rooms are discouraged; most of the time the resident is unable to set the channels or adjust the volume, and may become frightened by her own action. Their own room should also serve as a place of quiet, away from it all. Should they still have a favorite show, this can be incorporated into the daily activity, through the public TV.
We also ask families to fill out a pre-admission questionnaire, in order to help the staff familiarize with the person to be admitted as much as possible, in as short a time as possible. It was useful to know — for example — that Georgette liked to get up at the crack of dawn and have a cup of coffee and go to bed “with the chickens’, that is at sunset, if possible. She could continue this routine undisturbed, resulting always in a good night’s sleep. It was also helpful to know that our very competent looking business-lady had no idea how to put on one single garment independently, and the only action she could and did perform by herself was brushing her teeth several times a day, but that she was unable to stop once she started and one had to do this for her.
Human nature is imperfect and the following observations are not meant as criticism, but only as facts of life one has to deal with. When Alzheimer’s disease strikes a family, after a while — except in rare cases — only one caregiver remains to shoulder the burden of Alzheimer’s care through the years. Relief from family members is essential and yet seldom attainable. The reasons and excuses are varied, but the cause of this behavior may be that people find it hard to face this incurable disease. As more and more information began to trickle in through the efforts of the Alzheimer’s Association, and researchers looked beyond the presence of aluminum in Alzheimer’s braincells, shifting attention to genetics and the implications of chromosome twenty-one, this coming face to face with the disease became even harder for adult siblings and their children. It was an easy task to discard all aluminum cookware and foil wraps, even though it appeared evident from research’s early days on that dietary aluminum did not cause this disease; people were at least able to do something. Throwing out cookware and replacing them meant positive action, shopping for new ones a placebo that helped one forget those flawed chromosomes and the sister who had carried the burden of an ill mother alone for years now. This complacency usually comes to a grinding halt on the day of admission, when the family’s sense of responsibility is aroused. “How can you do that to ‘our’ mother?”, is the frequent outcry toward the lone caregiver. “We want to be with her when she goes to the nursing home! Poor Mom!” And all of a sudden, on admission day, all six children arrive with twenty-two grandchildren, ranging in age from teenager to a crying baby. The mother to be admitted has not seen her sons and daughters in months, their children for years, and has absolutely no idea who these people are who try to swarm into the strange little room. The teenagers are ill prepared and uncomfortable with the situation, everyone out-talks the other, the babies scream, and the quiet atmosphere of admissions remains only a dream. The extended family’s presence — in this situation - is without benefit to anyone, and results in a lot of stress for everyone.
For this reason we prefer to leave the admission in the care of the usual, most significant caregiver, who knows the afflicted person inside and out and can help her — or him — achieve a smooth transition period. Family visits can come later, and even then not “en mass” at first.
The nurses’ first appearance should signal something pleasant. She can enter the room — in her street clothes — with a pot of coffee, some cookies, introduce herself by first name as they settle down for a coffee-klatch. As the admitted person begins to feel comfortable, the family member may excuse herself, stating: “I am going to do some shopping, or go to the dentist, or work...”, whatever may mean something to the admitted. “I’ll be back tomorrow”, give a kiss and leave, without looking back, without hesitation, that could be picked up by the resident. She may call from home that day, frequently, but should not contact the admitted person for a few days. This way the caregiver can have — after months of stress — the first good sleep and the admitted person will have a chance to get used to his or her new world, without being torn between two worlds. He or she will have the freedom to explore, without the barbed-wire feeling of “no, you can’t come home with me”, or similar statements.
After the family member has left it is time to show the person around, first in his or her own room. It is good to show the closet with his own clothes in it, and the bathroom, to offer some privacy. It may be a welcome relief to the resident and a fine chance for the nurse to see if the resident is able to handle this situation independently. The next trip may lead to the patio and becoming a participant in an activity there. A short rest may follow before the next meal, and this is a good time to take vital signs and begin physical assessments. Disguised into toileting, one can do some skin assessment, changing from shoes into non-skid slippers one can assess feet and circulation, and so on. With a little inventiveness, one can do a complete assessment without alarming the resident. Taking bloodpressures may be the most problematic in the whole process. If the resident becomes agitated and chooses to refuse, don’t force the issue: the results would show only a bloodpressure under duress and not the resident’s usual value. You may try it later, maybe first on yourself, then on the roommate and finally the resident, who by this time — may feel left out and will enjoy the attention. If this is followed pretty soon by lunch or supper, the whole experience will remain in the realm of something quite bearable.
While this is going on, one should use few words to communicate with as many praises, smiles, and warm tones of voice as possible.
The usual format of reality orientation is to be avoided. The Alzheimer’s brain is incapable of remembering the proper use of bells, buttons, times of meals, days of bingo and so on. Your reality orientation’s most important task should be to offer the reality of your unconditional presence and care to the new residents through means they can comprehend. Sit with them, smile, hold hands, scratch backs, let them touch your and scratch your back. Sing a song with them if they are non-verbal, and they may even dance to the tune. This will be the basis of their reality from now on: your presence and the dignity they receive through your understanding.
Please do not try to assess at admissions their “mental status” by any of the usual, and to them humiliating means. I have seen residents in early stages of Alzheimer’s disease who did not sleep for days, because they were afraid that someone would ask the name of the president again, which they tried to remember, but forgot within minutes. Their time had stood still since the depression and Roosevelt; he was and would remain — for many — the president forever.
One day, as the doctor approached the resident, — a crafty little old lady — whispered tome:
“Who is the president?”
“Ronald Reagan”, I replied.
She searched my face with bewilderment.
“The actor?”
“Yes”, I said.
“No wonder I am in such a mess...” she concluded, meaning, this world must be crazy, if actors direct the world of politics and the fate of this country.
Maria, a frail little lady arrived not long ago in the States, understood English well enough, but when she was asked on one of the mini-mental exams to count backwards from a hundred, she did not do too well. Just then I remembered, that I — who had spoken English now for thirty-four years — was depending on my native tongue when it came to numbers, and would flunk any number-related memory exams in English. I saw Maria was totally humiliated by this experience. Quickly I asked, if she would count for us in Italian. Here her eyes lit up with happiness, and she passed the test with flying colors.
If one has to take care of a bilingual Alzheimer’s resident, and one does not speak that language, it is well worth the effort to learn a few words in that language, like good morning, I love you, and so on. This too shows courtesy and care, and increases the patient’s feeling of self-worth.
Even on the first day, even within the first few hours after admission, a natural affinity emerges between a resident and a certain caregiver. Chemistry of personality plays a significant part in our lives, and remains so through this illness. Since Alzheimer’s disease limits choices, this “choice” of the resident should be honored as much as possible. It is for this reason also that the staffing of an Alzheimer’s unit should be very steady. The caregiver’s presence should be as solid as the rock of Gibraltar in the midst of an Alzheimer’s person’s crumbling world. Steady personnel would be high on my list of priorities when looking for a nursing home.
Once we admitted a young lady, Eleanor, who has been a stewardess for a long time with one of the major airlines on the transatlantic flights. She had a terrific sense of humor, and a wonderful personality shone through her severe verbal barrier. When it came to our ‘sneaky’ physical assessment, with the speed of lightning she grabbed me by the neck, pressing on my carotid arteries, until I almost passed out, then she let go of me. With the broadest smile she looked at me and said:
“You see, I can...”
She sure could. She could protect herself from anyone. She also exerted herself as the master of her own fate. After that she scratched and massaged my back — she had wonderful hands and my tired back truly appreciated this — I scratched hers and we were the best of friends from there on. She was young and active, and hated to sit down for any reason. When all the “old ladies” were watching television, she used to walk behind their chairs and massage their backs and shoulders. She made herself indispensable! She also liked to sing French songs and shake her little hips to the tune, until everyone laughed. When she had a happy day and felt pampered, she imitated a pampered Southern Belle in gait and intonation. She must have been a sunshine all her life to others and managed to remain that all through her illness.
The admission process is the first great hurdle. If this is passed well, one has good hope of successfully introducing a resident to a new type of life.
ADMISSION
An Alzheimer’s patient seldom has the freedom of choice in the selection of a nursing home. His or her illness is probably so advanced at the time of admission that the diseased brain is unable to handle and compute even the most commonplace experiences and becomes totally bewildered at the massive onslaught of the sights and sounds of a communal setting. As diagnostic techniques improve and become more available, the afflicted person may fully participate in finding an appropriate nursing home at the early stages of the disease.
Matters of finance, distance from the care-giving family’s home are crucial in the selection process, as is the fact that up until now there are few nursing homes with Alzheimer’s units on hand and if there is one, there is usually a waiting list to be dealt with.
If the family has decided on a particular home and can afford to wait until admission is possible, this time can be well used to acclimatize the patient to the change of residence. If someone takes the patient for a daily walk, maybe with the family dog, instead of going around their own home, they should start walking on the street of the nursing home. The Alzheimer’s person will not remember the street, or other details, but a feeling of familiarity can be established. If the weather is nice, with the nursing home’s cooperation the patient and caregiver may even use the nursing home’s outdoor area for a rest, to instill this feeling of familiarity even more. From there only a few steps lead to their future private quarters.
When the day of admission arrives, a calm atmosphere is of utmost importance. When we admitted Irma, she not only complained of the non-home-like looks of the place, but was totally bewildered, when she saw a narrow little room, with clothes and personal items piled on top of her bed, nurses attacking her with bloodpressure cuffs, and admission related blood tests. She was convinced within the first ten minutes that this was a place where she surely did not want to stay, and started running away, setting off the alarm system. She was brought back from the door and placed into restraints by a nurse unfamiliar with Alzheimer’s care. The alarm alerted all the other residents, who also piled around the door and followed Irma and now stood around her, also looking frightened and helpless at the sight of restraints.
This disaster prompted the staff to develop a more workable admission process. I like to use the word “process” instead of “policy.” The process is flexible and all kinds of little freedoms can be tucked into it.
We ask the family to take their charge to their physician three or four days prior to admission for all the required tests and a physical, so needles and other unpleasant things won’t be the first on anyone’s agenda upon entering the nursing home. Alzheimer’s peoples’ recent memory is highly impaired or even seemingly non existent, yet they can remember persons and events that caused either a lot of happiness, or a high level of distress. Some Alzheimer’s residents never forgot the first blood test, nor the nurse who administered it, and for this reason she could never establish a level of trust with those residents.
We also ask families to bring in all the clothes and personal belongings at least a day ahead of admission, so that the clothes can be marked and placed into the closet, and when the resident arrives the next day the room looks organized, clean and inviting. Loved, familiar objects decorate the dresser, the table, so the change from home to the nursing home would be hardly noticeable. Even though television can serve a good purpose and used as part of their daily life, personal television sets in their rooms are discouraged; most of the time the resident is unable to set the channels or adjust the volume, and may become frightened by her own action. Their own room should also serve as a place of quiet, away from it all. Should they still have a favorite show, this can be incorporated into the daily activity, through the public TV.
We also ask families to fill out a pre-admission questionnaire, in order to help the staff familiarize with the person to be admitted as much as possible, in as short a time as possible. It was useful to know — for example — that Georgette liked to get up at the crack of dawn and have a cup of coffee and go to bed “with the chickens’, that is at sunset, if possible. She could continue this routine undisturbed, resulting always in a good night’s sleep. It was also helpful to know that our very competent looking business-lady had no idea how to put on one single garment independently, and the only action she could and did perform by herself was brushing her teeth several times a day, but that she was unable to stop once she started and one had to do this for her.
Human nature is imperfect and the following observations are not meant as criticism, but only as facts of life one has to deal with. When Alzheimer’s disease strikes a family, after a while — except in rare cases — only one caregiver remains to shoulder the burden of Alzheimer’s care through the years. Relief from family members is essential and yet seldom attainable. The reasons and excuses are varied, but the cause of this behavior may be that people find it hard to face this incurable disease. As more and more information began to trickle in through the efforts of the Alzheimer’s Association, and researchers looked beyond the presence of aluminum in Alzheimer’s braincells, shifting attention to genetics and the implications of chromosome twenty-one, this coming face to face with the disease became even harder for adult siblings and their children. It was an easy task to discard all aluminum cookware and foil wraps, even though it appeared evident from research’s early days on that dietary aluminum did not cause this disease; people were at least able to do something. Throwing out cookware and replacing them meant positive action, shopping for new ones a placebo that helped one forget those flawed chromosomes and the sister who had carried the burden of an ill mother alone for years now. This complacency usually comes to a grinding halt on the day of admission, when the family’s sense of responsibility is aroused. “How can you do that to ‘our’ mother?”, is the frequent outcry toward the lone caregiver. “We want to be with her when she goes to the nursing home! Poor Mom!” And all of a sudden, on admission day, all six children arrive with twenty-two grandchildren, ranging in age from teenager to a crying baby. The mother to be admitted has not seen her sons and daughters in months, their children for years, and has absolutely no idea who these people are who try to swarm into the strange little room. The teenagers are ill prepared and uncomfortable with the situation, everyone out-talks the other, the babies scream, and the quiet atmosphere of admissions remains only a dream. The extended family’s presence — in this situation - is without benefit to anyone, and results in a lot of stress for everyone.
For this reason we prefer to leave the admission in the care of the usual, most significant caregiver, who knows the afflicted person inside and out and can help her — or him — achieve a smooth transition period. Family visits can come later, and even then not “en mass” at first.
The nurses’ first appearance should signal something pleasant. She can enter the room — in her street clothes — with a pot of coffee, some cookies, introduce herself by first name as they settle down for a coffee-klatch. As the admitted person begins to feel comfortable, the family member may excuse herself, stating: “I am going to do some shopping, or go to the dentist, or work...”, whatever may mean something to the admitted. “I’ll be back tomorrow”, give a kiss and leave, without looking back, without hesitation, that could be picked up by the resident. She may call from home that day, frequently, but should not contact the admitted person for a few days. This way the caregiver can have — after months of stress — the first good sleep and the admitted person will have a chance to get used to his or her new world, without being torn between two worlds. He or she will have the freedom to explore, without the barbed-wire feeling of “no, you can’t come home with me”, or similar statements.
After the family member has left it is time to show the person around, first in his or her own room. It is good to show the closet with his own clothes in it, and the bathroom, to offer some privacy. It may be a welcome relief to the resident and a fine chance for the nurse to see if the resident is able to handle this situation independently. The next trip may lead to the patio and becoming a participant in an activity there. A short rest may follow before the next meal, and this is a good time to take vital signs and begin physical assessments. Disguised into toileting, one can do some skin assessment, changing from shoes into non-skid slippers one can assess feet and circulation, and so on. With a little inventiveness, one can do a complete assessment without alarming the resident. Taking bloodpressures may be the most problematic in the whole process. If the resident becomes agitated and chooses to refuse, don’t force the issue: the results would show only a bloodpressure under duress and not the resident’s usual value. You may try it later, maybe first on yourself, then on the roommate and finally the resident, who by this time — may feel left out and will enjoy the attention. If this is followed pretty soon by lunch or supper, the whole experience will remain in the realm of something quite bearable.
While this is going on, one should use few words to communicate with as many praises, smiles, and warm tones of voice as possible.
The usual format of reality orientation is to be avoided. The Alzheimer’s brain is incapable of remembering the proper use of bells, buttons, times of meals, days of bingo and so on. Your reality orientation’s most important task should be to offer the reality of your unconditional presence and care to the new residents through means they can comprehend. Sit with them, smile, hold hands, scratch backs, let them touch your and scratch your back. Sing a song with them if they are non-verbal, and they may even dance to the tune. This will be the basis of their reality from now on: your presence and the dignity they receive through your understanding.
Please do not try to assess at admissions their “mental status” by any of the usual, and to them humiliating means. I have seen residents in early stages of Alzheimer’s disease who did not sleep for days, because they were afraid that someone would ask the name of the president again, which they tried to remember, but forgot within minutes. Their time had stood still since the depression and Roosevelt; he was and would remain — for many — the president forever.
One day, as the doctor approached the resident, — a crafty little old lady — whispered tome:
“Who is the president?”
“Ronald Reagan”, I replied.
She searched my face with bewilderment.
“The actor?”
“Yes”, I said.
“No wonder I am in such a mess...” she concluded, meaning, this world must be crazy, if actors direct the world of politics and the fate of this country.
Maria, a frail little lady arrived not long ago in the States, understood English well enough, but when she was asked on one of the mini-mental exams to count backwards from a hundred, she did not do too well. Just then I remembered, that I — who had spoken English now for thirty-four years — was depending on my native tongue when it came to numbers, and would flunk any number-related memory exams in English. I saw Maria was totally humiliated by this experience. Quickly I asked, if she would count for us in Italian. Here her eyes lit up with happiness, and she passed the test with flying colors.
If one has to take care of a bilingual Alzheimer’s resident, and one does not speak that language, it is well worth the effort to learn a few words in that language, like good morning, I love you, and so on. This too shows courtesy and care, and increases the patient’s feeling of self-worth.
Even on the first day, even within the first few hours after admission, a natural affinity emerges between a resident and a certain caregiver. Chemistry of personality plays a significant part in our lives, and remains so through this illness. Since Alzheimer’s disease limits choices, this “choice” of the resident should be honored as much as possible. It is for this reason also that the staffing of an Alzheimer’s unit should be very steady. The caregiver’s presence should be as solid as the rock of Gibraltar in the midst of an Alzheimer’s person’s crumbling world. Steady personnel would be high on my list of priorities when looking for a nursing home.
Once we admitted a young lady, Eleanor, who has been a stewardess for a long time with one of the major airlines on the transatlantic flights. She had a terrific sense of humor, and a wonderful personality shone through her severe verbal barrier. When it came to our ‘sneaky’ physical assessment, with the speed of lightning she grabbed me by the neck, pressing on my carotid arteries, until I almost passed out, then she let go of me. With the broadest smile she looked at me and said:
“You see, I can...”
She sure could. She could protect herself from anyone. She also exerted herself as the master of her own fate. After that she scratched and massaged my back — she had wonderful hands and my tired back truly appreciated this — I scratched hers and we were the best of friends from there on. She was young and active, and hated to sit down for any reason. When all the “old ladies” were watching television, she used to walk behind their chairs and massage their backs and shoulders. She made herself indispensable! She also liked to sing French songs and shake her little hips to the tune, until everyone laughed. When she had a happy day and felt pampered, she imitated a pampered Southern Belle in gait and intonation. She must have been a sunshine all her life to others and managed to remain that all through her illness.
The admission process is the first great hurdle. If this is passed well, one has good hope of successfully introducing a resident to a new type of life.
CHAPTER VI
THE FIRST NIGHT
As in all things, the admission process, which from the new patient’s point of view takes twenty-four hours, is greatly helped by experience.
I learned that it is of great help to the new resident if the admitting nurse stays with him or her well into the next shift. At this point the admitting nurse becomes the “significant” other in the admittee’s life until new friendships develop. Frequently the admitting nurse will remain a very significant friend to the resident, no matter how well he or she became adjusted; there will be a memory, a feeling about this great change in their lives and one that was a part of it. The resident also needs great deal of reassurance, full-time attention, and whenever possible, I attempted to fill this need.
Irma arrived a couple of hours before supper. She had a bumpy start, with the tests, alarms and restraints. Her face was red from exertion as she struggled against the restraints. I sat quietly down next to her, attempted to make eye contact.
“I will open these, OK?” — I pointed to the restraint.
“OK”, she replied.
“We will throw this into the trashcan and never use it again...” I reassured her.
She smiled at me as I loosened her ties, took off the jacket and rolled it into a neat little bundle; I passed it over to her.
“Let’s go and find a trashcan”, I said and took her lightly by her arm, because her knee appeared a little weak. We found a trashcan in her room. After that we looked at her clothes, her pictures, and in seemingly in no time it was time for supper. Here at the table, I acquainted Irma with her roommate, Florence who was at a similar stage of the disease and of similar background: both were teachers with a large family. I brought myself a salad and since I was not on duty I had time to spend with them. I had a great time dining and went for a walk with them after dinner. As she became tired, Irma happily settled down in front of the large color TV with her roommate, and there they relaxed until it was almost time for the night shift to come on. I had time in the meanwhile to read her preadmission questionnaire, which stated that all her life she just loved TV. I let her indulge and this freed me to call her family to tell them all was well.
“What is she doing?”, they asked.
“Watching TV...”
“Then she is all right...”. I could hear them smile even through the telephone.
“Do you think we should talk to her?”, they asked.
I advised against it. First of all, the spell of her present quiet contentment would be broken, secondly, should she want to go home, we could not oblige. Then she probably would sit on the edge of her bed all night, awaiting the time when she could leave.
I also assured the family that I would call if there was anything that they should be aware of, but otherwise I wished them a quiet evening with the children and a lazy weekend, since tomorrow was Sunday.
“Don’t you want us to come in for a visit?”, they asked. “It is really up to you, but for Irma it would be better to establish herself in one world; it is hard enough for her to make sense of one setting, and she absolutely could not handle two for a while. You can call us a hundred times a day and night about her, but let her sort out her present life in an unhurried manner.”
I heard a quiet sigh at the other end of the phone.
“We have not had a free weekend in such a long time... I don’t even know what to do with it...”
“Have a good sleep and breakfast out with the children...”, I ventured my favorite solution.
“That sounds great”, she said... “We’ll do it. I’ll come in Monday, after work for a while. What should I tell her?”
“What would you tell her at home?”, I asked.
“Well... I would say, hi Mom, I am home... and we would have supper and watch television.”
“There is no reason you could not do the same here”, I said.
“I guess not... It’s almost like transplanting home here”, she said.
“That’s what we hope for”, I said. “I’ll order supper for you on Monday. Have a great weekend!”
By the time we ended the conversation it was almost ten o’clock at night. I joined Irma and Florence at the TV in the living room. They were watching an old time comedy movie about a girl’s boarding school.
“I know where I am”, Irma said. “In a boarding school!” She sounded triumphant as she found an explanation for her present scenery. “I like it!”
Since she was obviously happy with this solution I let her believe it. At least for now.
As the night nurse arrived I passed on this information to her. She laughed: “Why didn’t I think of this before!... Boarding school it is.
I introduced her to Irma and they became friends within minutes. I followed her to the bedroom, where Florence and Irma were tucked in for a good night’s rest.
As I arrived the next morning, Winnie told me that Irma slept like a baby all night, used the washroom at five, and settled back for another snooze.
“Quite different from Bob, remember?”, Winnie reminisced. We had a few years behind us in this unit, with many memories.
“How could I ever forget?”, I mused. Bob was a tall, thin fellow, whose mind had not retained any memories except his experiences as a fighting soldier in the second World War. After his return he got married, and led a happy and successful life until Alzheimer’s disease afflicted him in his seventies. He liked to walk, to eat and to smoke. While he had there three, he seemed a happy and uncomplicated man.
One day a lovely new nursing assistant arrived to our unit. She was of minute built, excellent nursing skills and was very conscientious. She spoke English with only a trace of oriental accent. Every morning as she arrived, she entered all the rooms to see how everyone was. She knew Bob was a new resident, so when she saw that he was awake, resting on his back, she leaned over him, wanting to say hello. Neither she, nor we were prepared for what was coming.
Bob let out a most horrible scream of pure terror.
“The Japs are coming, the Japs are coming!”, he yelled, jumping out of bed. He ran past the nursing station, through the door, and out to the street, throwing his long, skinny arms to the air, his open-backed hospital gown fluttering like a flag around his naked body, making his skinny legs look even longer and skinnier.
“The Japs are coming, the Japs are coming!”, he continued to yell.
It was the busy commuting time of the morning and he had many admirers. He was so fast, the two of us could not keep up with him. Like a Piped Piper, he ran in front of us a few yards.
“The Japs are coming, the Japs are coming...” Luckily we met a police patrol, who caught him and helped return him to the home.
During the following days we attempted to familiarize him with our new assistant, to no avail. Even though his reactions did not include flight anymore, tell-tale signs of intense fear manifested themselves each time he came face-to face with her. The veins on his neck would distend and heavy pearls of perspiration would cover his forehead. He instantly would switch his cigarette into a battlefield position, covering its glow with the palm of his hand, so the enemy artillery would not be alerted to its light. He would follow her every move from behind a larger piece of furniture... Again I was reminded that no war ever has any survivors, in the full human sense. Any unguarded moment brings the truth to the forefront: they are glued forever to that last battlefild and there is no escape.
Neither does one ever completely loose the fear of a totalitarian regime’s terror. After some thirty years and my walk to freedom, my palms still sweat and my knees tremble when I see a police car, which in my preflight days meant inevitable loss of freedom, maybe torture, maybe death... What the police cars mean for me is the same experience as an oriental face for Bob. And tragically, what the word ‘nursing home’ has become to mean for many elderly. A total loss of freedom of choice...
“Yes, I remember Bob”, I repeated and silently renewed my vow that whose lives I touch will be helped to attain the greatest possible freedom that can be achieved at their level of functioning...
THE FIRST BATH
Another large barrier to pass toward a healthy — and I may add — clean future, is taking the first step toward a shower, or tub. I have met only a very few Alzheimer’s residents who liked to wash, much less to bathe.
I remember my mother was like a duck all her life. She loved water with a passion, a trait I inherited. She liked to swim, to bathe, to do any housework that included water. After she suffered a massive stroke, leaving her right side paralyzed, she underwent a profound personality change. Formerly a mild mannered lady, she now became agitated easily, and was quarrelsome, throwing dishes at us when she did not care for the food that day. And she suddenly hated water. She would scream as water touched her body, even with the most gentle touch.
Luckily she recuperated. Life returned to her extremities and her old personality began to shine through again. She told us then that no one could ever imagine what a terrible feeling the touch of water had been to her overstressed nerves. The cold would feel icy, the warm hot, the waterdrops like rocks hitting mercilessly against her body. I tucked away this information in my memory for later use, which presented itself in our Alzheimer’s unit. By now we knew — through the diligent effort of researchers — that this disease is not a mental illness, not a mood disorder, not senility, but a disease of the brain. As a result, sensation may be altered in many cases, hence the dislike of water, I reasoned, each time we had to face this experience with a resident, especially a new resident.
For this reason, I never go into detailed information in advance. That day I took Irma by the hand and told her: “I will show you the bathroom”, and started to walk hand in hand. As we reached the shower room I showed her the shower head and turned on the water at a mildly warm temperature. I let her touch the water.
“Nice”, she said. I gave her a washcloth and she started to wash her face. “I’ll help you do the rest”, I told her, as I helped her undress. This was my lucky day. Irma seemed to like water and enjoyed a good backrub. She felt great after the bath and she was ready for a good day.
Fright about bathing may come from profound confusion, when the Alzheimer’s person does not recognize events and objects for what they are. He or she cannot recognize even a familiar bathtub of the old fashioned kind. The institutional tub, where you sit on a chair that lifts you into the water in a sitting position and the water covers you up to the armpits, frightens any uninitiated person. When you top this with a turning on the motor for the whirlpool — a well loved addition for any arthritic or aching body — they think they are being readied for electrocution. There is no way you can explain this to a new Alzheimer’s resident. We can give a demonstration with the cooperation of another resident, while he or she enjoys the whirlpool bath, but this is frequently a futile effort. There has to be a tried friendship between caregiver and the resident before permission for this experience can be granted.
I usually take the new residents to the shower, as I did with Irma. I can show what the showerhead is, where the water comes from and so on. If this leaves no impression, I bring in a washbasin to soak hands and feet and gently wash the rest, leaving this experience in their feelings as something neutral. The next time it will be better.
One thing may be taken for granted: that no two experiences in bathing — or anything else — will be the same in an Alzheimer’s unit. I have to be prepared for the possibility that — as the novelty of the “boarding school” wears off, Irma will refuse her bath. For this reason, no schedule for regular bathtimes can ever be closely adhered to in any Alzheimer’s unit, a fact that nursing personnel, unfamiliar with the implications of this disease, find hard to accept and manage.
“You don’t always feel the same about taking a bath”, I tried to explain the situation to a colleague, to whom rules and regulations were foremost. “This is not an institution. This is a home. It says so. N u r s i n g h o m e. At home — even in this one — one should have the liberty to say no to now and postpone action to later.”
Grudgingly she conceded, or so it appeared. In the spirit of faultfinding, she confronted me the next day:
“Did she ever get her bath today?”
“No, she did not”, I went into the game she began. As her face began to turn red with indignation, I continued:
“She did not get it today. She got it five minutes after she first refused it — yesterday. As soon as she felt like it. And since her Alzheimer’s disease helped her forget the ‘no’ she said five minutes earlier, she happily took her bath later.”
Miss Rules and Regulations turned around and quickly buried herself in one of the comfortable charts that have no independent wills to bother with.
GOOD MORNING WORLD
Barbara, our athletic nursing assistant, told me once what a frightening experience the first encounter with Alzheimer’s residents was for her at a time when Alzheimer’s was not yet a well known fact of life. She had just finished her schooling, where she was well trained for every eventuality, except Alzheimer’s disease.
It was her first day at work. Happily she entered one of several double rooms assigned to her that day. She went to the window, swiftly opened the curtains to let the bright sunlight in and said a loud and cheery “Good morning”, to the residents, who were still half asleep in their beds. Hearing her voice they sat up, so she continued: “My name is Barbara, and I am your help today. It is Wednesday, and the temperature is already eighty degrees. It is seven thirty and we have to be ready for breakfast in half an hour.”
As she finished her orientation, she realized, that one of the occupants was hiding under the blanket, and the other approaching her angrily yelling “Out! Out!” She was eager to oblige.
Since then we have learned — from experience and the now available literature — that an Alzheimer’s brain is incapable of processing information at such a pace. One has to say slowly as few words as possible and then wait until it has time to sink in. The barrage of Barbara’s actions and words were totally incomprehensible to the two Alzheimer’s residents. All they knew was that their quiet rest was interrupted and they were told something, which they should understand, but were unable to. They were disturbed and humiliated.
One of the first things I like to tell anyone entering the world of Alzheimer’s disease is to enter the world of feelings. Everything can be told, given meaning, through the senses. Our thinking, analytical approach to life has to be left behind when dealing with these residents. This task may appear hard since we were conditioned by our civilization from early childhood on to place little emphasis on our feelings.
Barbara now knows she should have entered the room quietly, could have sat down next to one of the residents, gently rubbed her back, given a hug and eased her out of bed. They could have walked to the window and felt the window pane with the palms of their hands, which would have told them that it was a sunny and warm day. Information which can start the day with a good morning. She would carry a drop of sunshine all day on the palm of her hand, the sight of green grass and a little sparrow taking his vigorous morning bath in a puddle left by last night’s rain in front of the window.
Then she would be helped into a light dress and shoes, and sit on the patio with the others, awaiting breakfast. These warm, but not yet hot mornings are here for us to be enjoyed. In our busy lives we seldom indulge in taking part in nature’s celebration; now there is time to do it, Barbara concluded. Sitting on the patio, they would observe another bird grooming himself, stretching his wings, combing every one of his feathers with his beak.
“Let’s do the same”, she said and stands up stretching her arms and giving a healthy yawn. Laughing they all get up and do the same. They feel part of nature at this point and feel so good! As they sit down, Georgette sings “God Bless America” and everyone chimes in. After that they sing some old time favorites, like “Old Mac Donald”, and even a new song, they managed to learn: “You are my sunshine, my only sunshine, you make me happy...” Someone brings Ann out to the patio and even she smiles, when she sees the happy scene.
The scent of fresh coffee coaxes us in for breakfast. Only a few beds have been made yet, only in the rooms where the resident was unable to participate in our housekeeping efforts. There are, two major divisions of the “helpless” variety: the ones, like Ann, who are physically unable to move about, and the other class, which was conditioned by society against doing housework. Ed and Bob decided that bedmaking and vacuuming were a woman’s job, another lady never did a household chore in her pampered life. Age seventy, or ninety coupled with Alzheimer’s disease is not very conducive to change. One can hope, one can tempt residents and there may come a day, when he or she wants to become useful and will lend a helping hand, but one should never force the issue.
After breakfast everyone comes back to their rooms, to finish getting dressed and wash hands. This is the time some family members rush in for a hug and bring clean clothes on their way to work. Then comes bedmaking, dusting, watering the plants, which should never be of the poisonous variety like poinsettias at Christmas time. The green of the leaves may be tempting, good enough to eat... These activities again bring back the home routine of most lives. Irma enjoys the chance to talk during our bedmaking; her roommate says her back is bothering her, so we do her bed, too.
As we all leave the rooms for other activities, the housekeeping staff corrects the dusty patches on dressers we left behind.
One of our residents — Henrietta — was a very proper, meticulously groomed and dressed lady with profound aphasia. Judging from her appearance and her good efforts to be a part of our community, one never would have guessed that she quietly secured all kinds of “goodies” from cookies to steaks, in her pocketbook, which she always carried, and then hid its secret contents under the lining of the trashcan in her room. One day her secret was discovered in her presence. With the fierceness of an ancient dragon protecting the entrance of its cave, she posted herself in front of the trashcan and protected her “survival” foods at all costs. From then on the trashcan was investigated and cleaned after each meal, but never in her presence. She never complained of not finding her treasures. Perhaps the outwitting process and the hiding was the important factor in her experience.
After our housekeeping effort we liked to join the general population for some sing-alongs. Song and dance was the bread and butter of our lives. Even the most non-verbal person was able to enjoy and participate in music. Henrietta — even though aphasic — was able to sing a lovely Irish ballad she learned as a child and was eager to share with everyone, any time.
And so the routines of our unit moved along, every day, with comforting, but never dull, sameness.
ACTIVITIES
On a non-Alzheimer’s unit there usually is a comfortable schedule in a day’s organization, with activities tucked into the may daily events.
The very short attention span and total dependence on others of an Alzheimer’s resident necessitates the efforts of non-stop, individualized activities, arranged into non-tiresome twenty-twenty-five minute long sessions. Everything is an activity, beginning with the early morning lounging and exercise, dressing, through bedmaking, meals, singing, TV watching to midnight star-gazing. All of our employees on the unit instinctively followed this unspoken, but very evident demand. Once we had a very stressful morning that just did not get off the ground as it usually did. It rained and we could not go out. Henrietta had one of her infrequent seizures that scared her roommate. Dr. Mac decided to finish some of his physicals before breakfast. The air-conditioner broke down and unfamiliar faces arrived in the unit to fix it. The residents were swarming about like bees looking for their queen. I was trotting behind them with their medications, which they usually took calmly and naturally at breakfast, or mealtime, but now refused vehemently. Finally the medications were passed. Dr. Mac left, the air-conditioner helped to cool the heated rooms and moods and the “Kid” managed to take everyone to the living room to cool off and settle down, so we could hope for a better afternoon.
Just then Miss Rules and Regulations popped in for a visit, stared into the calm and quiet living room, then came to my desk and whispered with quite a bit of indignation:
“Are you aware that one of your assistants is sitting down, watching television?”
“Yes I am! and may God bless her for it”, I added. I knew where Miss Rules was coming from. She too was caring for twenty residents on the “outside” unit, one of her nursing assistants called in sick, there were tests to be done, charts to be finished, residents leaving for the day to be signed out, and here we were, sitting around, watching TV... I still enjoyed a rare moment of mischief I permitted myself, when I replied:
“This is our activity...”
Angrily she turned around to leave, when the door opened and two inspectors entered. So she stayed, probably to enjoy the proper authorities finally “setting us straight”. Fate was doubly kind to us that day. First, because the inspectors had not come an hour earlier. Second, because after they walked through the rooms and corridor, they stopped at the desk and said: “We have never seen such a quiet Alzheimer’s unit.” They paged through the medication book.
“They are not even on any of the usual calming medications! Very good!” they said and left. My friend quietly followed them. And I must confess, we all felt that our hectic and hopeless-looking morning was well rewarded.
Through the years I have found that people usually belong into two distinct categories: one group has learned the joy of being creative and was taught that patient work brings its own rewards. These people seem always able to find the good side of everything and make the best even of the most impossible situation. This early training and knowledge shines through even at an old age. They are the ones that never complain that there is not enough entertainment. They are happy in making embroideries or knitting baby blankets for their great-grandchildren.
In an Alzheimer’s situation, Eleanor may be termed as such an individual. She was used to helping people relax, serving them food and comforting them during the many transatlantic flights she attended. Now she is perfectly happy to walk up to people, rub their backs and sing to them.
Henrietta had a team of wind-up toys she used to entertain her grandchildren with. Now, she shared them with others. There was a little drummer-boy drumming to a hopping bunny and a race car pushing against a seal that balanced a ball. Even Bob and Ed enjoyed them from a dignified viewing distance, and later even helped in winding them up, so they would work in unison.
And there is another type, I call the “consumer personality”. These people never learned to be creative, nor to extend self in any way for anyone. They forever complain that there is nothing to do, nobody entertains them, and so on. They feel that they are better than the rest of the residents and the world should revolve around them. They don’t want to get their hands dirty with gardening. The philosophy of instant gratification in our consumer society gives no real satisfaction to its adherents, and it is the root of unhappiness in many lives deprived of creativity. Some people nurture the image of a grandmother who did a lot of handknitting for family members after a full day’s work, and so they are at least able to relate to ideas of unselfishness and industry. But there is another generation already grown without this memory. These are the young parents who invade the shopping centers around holiday times, their poor little children dragged through crowds, or locked into shopping carts to find the items that will make the holiday. They are exhausted and nervous and scream at their whining babes, instead of going home, baking cookies and stringing garlands with them to celebrate life and family in a creative fashion. These are the people who become unable to form any real emotional attachments, since they were conditioned to the norms of a “throw-away’ society, where the Christmas-tree is on top of a trash-pile by December 26 and Christmas puppies and kittens have to be abandoned, or discarded in some other way. Even the quiet little goldfish is flushed down the toilet after it has served its “holiday” purpose, and the changing of water in its little tank becomes “too tedious’. A superficial observer would think that this new breed of human beings is very selfish. But as you look around in their late-life in a nursing home, you will discover how deprived they are of any real value that contributes to our humanity. These are the children who never learned to belong or to open up to feelings, and as they aged they grew a thicker and thicker crust around their hearts. They believe that if they let their feelings come to the surface, their whole world will disintegrate, together with their defenses. So they remain cold and aloof to the end.
I remember what an uphill struggle it was to convince authorities to permit visits of babies and animals into nursing homes. When Flora Bell suggested babies, the conservative professionals raised indignant eyebrows at the idea: “She should know better... Children would bring in childhood diseases and babies would get sick from old people’s germs...”, they argued so children’s visits had to wait another decade, just as Barbara’s suggestion to have animal friends come in; they cited “dog germs” and similar excuses against their coming. But every visionary’s time arrives one day, and both babies and visiting pets were eventually permitted to come.
The regular nursing home population almost instantly parted into two distinct groups. A small gathering of friendly little old people, the ones who had memories of the depression, who had grandmothers who did many kind things for their families, or who came from a less automated culture, who reached out for and cuddled babies, or patted the animals.
The other, larger group of spectators made loud remarks: “Who needs these babies here? Let their mothers take care of them”, or “Look at these naughty animals, they get more attention than we...” These were probably the children who had to give up their beloved little pets after the first puddle in the living room and were trained to value carpeting more than life.
As Alzheimer’s disease gives way to unmasked feelings, both children and animals found a very nurturing environment in our unit. Family members were encouraged to bring pets and children for visits, and this became a regular part of our activity schedule. Dan would walk his dog up and down the corridor with pride and little hands would reach out and pet the dog, side by side with the old. Both enjoyed the same world of no-pretense and of love. Even the animals preferred the company of Alzheimer’s residents.
One day one of our residents happened to be in the living room of the general floor for activities when a visiting dog arrived. The dog looked the gathered forty or so residents over in seconds and straight as an arrow, marched over to our Alzheimer’s person, who greeted the animal with a hug that shared her entire love filled being with him; he never left her for the rest of the official visit.
We always tried to incorporate activities into the flow of daily life, in a very unobtrusive manner and always offered choices, if the resident so preferred. Establishing a well functioning activity schedule, a thoroughly documented behavior record is helpful. If there are two or more “sundowners” in the unit, a walk for these people can be incorporated into the unit’s activity schedule, at the best time for all concerned, as it can be established from these records.
Planned rest periods before meals and bedtime, with singing or just listening is an important activity to any successful Alzheimer’s unit.
Stackable “busy-boxes” are helpful on days when their is nothing else to do, especially during the long rainy fall and spring seasons. Coloring books and crayons in one box, dolls of different sizes, sponges substituting for building blocks and yarns to wind into large, soft balls were the favorites at our place.
Just as no word can ever substitute for real experience in our everyday life, it is even more so in the world of Alzheimer’s disease sufferers. Seasons have to be felt, to be experienced, the world has to be touched to know that it is there and that the Alzheimer’s person is a part of it. For this reason every activity schedule should be highlighted by outings that encompass all the seasons.
I remember the first such outing in our unit. It was Christmas time and we wanted to experience the lovely lights and decorations in our town. Since it was bitter cold that year, we planned sightseeing via a van. As the van arrived, Dan energetically secured his place next to the driver. His usual quiet self melted away as he commented: “This is beautiful! I am happy!” His obvious joy melted all our hearts and stole the spirit of the season into our lives.
We had hayrides and visited duck-ponds, pumpkin patches, ice sculptures and shopping centers. The crowd and the insult of too many stimuli at the latter convinced us to drop this experience from our schedule and keep it only for a select few who were able to enjoy it. Making pictures of all these activities and collecting them with other memorabilia in an album is a nice addition to winter activities and family sharing. One family member had some especially good pictures representing each season. They were enlarged and we hung them on the wall of the corridor. Many of the residents recognized themselves in them and frequently spent some time looking at them, since these pictures reminded them of some very pleasant feelings.
Our unit never had much use of written labels placed on each piece of furniture with the particular item’s name. The labels create a busy appearance and serve as constant reminders to the residents that they should know what these labels mean, but are unable to figure them out as they are probably in an advanced stage of Alzheimer’s.
Interestingly the regular street “stop” sign on exit doors — with a little perseverance — did work with most residents. Even if it would have worked with only one in twenty, it would have been worth-while to apply these signs to exit doors, to save the resident from embarrassment and others too, who probably would have followed in the initiator’s footsteps.
The use of music would merit an entire book as one of the most important and most therapeutic aids in an Alzheimer’s sufferer’s life, when used with know-how, diligence and perseverance. I mention know-how because the regular singing sessions of the general population usually begin by handing texts and sheet music to the participants. Alzheimer’s residents get uncomfortable and anxious from here on, with their fight and flight responses already set in motion. Some other, more advanced cases may try other methods: Irene, a non-verbal resident, who was unable to distinguish the purpose of objects started to chew the sheet of paper with the music on it as soon as she received it; she was quite happy with this activity until a well meaning person approached her: “This is for singing, we don’t do this...” and took away her paper. Irene was convinced that this was a snack and she did not want to give it up. She started to scream, and at this point the fight and flight response of all the others came into full bloom. I leave the rest to the reader’s imagination.
Singing sessions are for the residents to derive joy and satisfaction in whatever fashion they are able to do so. We usually ask Henrietta to sing her Irish ballad. Everyone enjoys her voice and claps at the end. This happy mood initiates Georgette’s “God Bless America”. After the mood is set, we sing all the tunes that everyone knows. Since my repertoire of American children’s songs was scanty at best, we stuck for a long while to “Old Mac Donald” and “Twinkle, twinkle, little star”, repeated several times. The more active residents liked to dance to these tunes and then settle down again and chime in with us. My children were enrolled in a music education class using the pioneering Kodaly method. The researchers of this music philosophy compiled original folk songs of many nations. They also published a collection of beautiful American folk songs. This little treasure book of simple songs became my favorite companion and teacher, through which we shared many happy, song-filled afternoons with our residents.
We found that music helps to accomplish even our most mundane activities. If someone did not like to do a particular activity of daily living, we used a tune and completed the activity with a smile. One frequently heard a handy little tune with many different texts: “This is the way we brush our teeth, brush our teeth, brush our teeth...”, or “...make our bed, make our bed....”, or any other words, that fit the occasion. The tune helped to evoke memory and coordinate thought and action.
One day Providence sent a lady well trained in music to us as a volunteer. She was also interested in the Kodaly concept of music education and through it discovered that pentatonic tunes were more readily grasped and retained than other tunes by our residents. She composed little one-liners, fitting the personality of each resident, containing their names, too, like
We concentrated on each new song for a week and interestingly, not only did all residents learn and remember the text and tunes, but they were able to remember their fellow residents’ names too. Our “Music Lady” always arrived with a smile and a guitar, settled down in the midst of our residents, had a few good words, and encouraged interaction. Her influence long reverberated after she had to move to another town.
Another very important activity was the religious experience in each resident’s life. Religious ceremonies and songs are ingrained in most people’s lives from early childhood on and remain a comforting experience throughout their lives. This should be used to the fullest in any nursing home, and especially in their Alzheimer’s units. If the nursing home is fortunate enough to have a chapel and weekly religious service, Alzheimer’s residents should be taken into consideration by including those one or two hymns that are familiar to them, so they feel a part of the religious community. The brightness of candles, the sound of bells, the quiet monotone of prayers remains meaningful to most to the end. In nursing homes where no chapel nor religious services are available, meaningful services which serve the same purpose can be created.
Again, I have to reach back to our early days in Alzheimer’s care. One Sunday, as many of the people on the general floor left for church with their families, Flora Bell and I decided to bring a little “church” to our residents. We gathered them into the living-room around a large table, placed flowers and a candle on it, sang a familiar hymn, then read the first couple of verses of the Twenty-third Psalm. Eyes began to shine and a nice, warm feeling began to swell up our throats and moisten our eyes. Just then a newly admitted gentleman started to sing a Hebrew religious song in a beautiful voice. It was quite long, but the solemn mood kept everyone listening. As he finished, there was a moment of silence, then Georgette sang her “God Bless America”. This impromptu service was probably one of the most meaningful religious services I have ever attended and I am sure God must have smiled lovingly when He saw the devotion of this little community.
All through the years I tried diligently to find a minister, or a student of ministry to come, familiarize with our Alzheimer’s residents, and hold services on any day of the week. To us a holiday would be the day they would come. All the ministers of all denominations in our town turned down our appeal since we did not have any funds to match our request. Apparently God cannot be served for “free” in our society... We had residents, who belonged for decades as tithing church members to a nearby church, yet the servants of this church never came to see them after admission. One resident’s priest came a few times a year, ran in, unannounced, interrupted the then ongoing activity, thus rendering his “religious” visit meaningless. Had he taken the time to announce his coming, and sat down and extended himself to all of our residents for only ten minutes, much good could have been gained... Since those days, however, the religious community’s attention has been reached regarding the needs of Alzheimer’s residents, and there is hope that appropriate services will be forthcoming.
Here I have to add the caution that one must never try to impose religion on anyone, much less on an Alzheimer’s person, unless he or she is a willing participant and derives something positive from the service.
It is also noteworthy that during our younger years we often indulge in beliefs that the universe is a purposeless, mindless, spiritless machine, and that its only function is to revolve around our needs. But, having worked for almost twenty years with the old and the ill, I have never found a person who did not need God and love and hope at the end. There is some instinctive hope for an afterlife in everyone even if his or her official religion did not include this concept. Maybe the time will come when God and hope will become integral parts of our lives, and medicine, too, in exchange for our present practices based on material and technical logic alone. Reliance on the purely material aspects of life may result in a love-deprived healing communities which easily permit the patient and physician to slip into an attitude of “hopeless giving up”.
CHEMICAL RESTRAINTS
Unobtrusive appearing chemical restraints are a lot harder to overcome than the very obvious physical restraints. State and local regulations now insist on only occasional and well documented use of this latter. Hopefully this will eventually hold true for chemical restraints as well.
From my early Alzheimer’s experiences on I learned that both physical and chemical ties become unnecessary when one helps a resident to a maximum feeling of well-being through helping them in all the functions they are unable to handle, and at a pace their illness demands.
Until this can happen, great vigilance is needed on the part of the caregiver, who should try to answer several questions simultaneously and repeatedly, charting times and circumstances when the Alzheimer’s resident becomes agitated.
Patty, a second stage, up and about Alzheimer’s sufferer was observed around noon-time the first day becoming increasingly agitated. Her face turned red, with slight perspiration above her lips. It was time to get ready for lunch and preceding this we helped everyone to the toilet. As Patty finished, her agitation was gone — without medication. She needed desperately to relieve herself, but did not know how to translate this feeling into action. Her agitation entered her communication chart, and the lady not only became continent overnight, but never needed a chemical restraint again.
Residents may be on assorted medications for various medical problems; the listed side effects of these medications may or may not include changes of mood but still may cause such changes in some Alzheimer’s residents. Christina received medications to correct heart and bloodpressure problems. Every morning, about an hour after she received her medications, she became almost violent. The time was faithfully entered into her behavior record, and the same time frame was observed for this behavior every day except when we had to hold these medications before bloodtests and administer them at a later time, her violent behavior occurred later. Her medications were measured at a therapeutic level, yet her behavior indicated some intolerance. Dr. Mac found this significant enough to discontinue these medications under close supervision. The result was dramatic. The obviously chemically induced stress subsided in a few days, she never needed chemical restraints, and as a bonus, she did not need any bloodpressure medications either, as she settled into her new life-style in the unit.
Any new, minor, but irritating medical problem may result in increased irritation if the particular cause is not discovered, orders may be given for any of the popular mood altering medications, instead of finding the real cause for a newly developed agitation. A corn, an ingrown toenail, a toothache and constipation are among the least considered causes of agitation. For this reason I made it a habit to look over all my residents regularly from top to toe to discover anything that may be painful or bothersome but which they cannot express or complain about.
We managed to withdraw — in time — ninety-nine percent of our residents from chemicals: we were substituting laxatives with high fiber diets, sleeping pills with lots of fresh air and a cup of warm milk, and so on. All this added up to feeling comfortable and resulted in a calm behavior.
Occasionally though, both physical and chemical restraints become necessary and are in the realm of the resident’s momentary need. But as it is with physical restraints, so it should be with chemical restraints, to be kept for very rare occasions and when all else fails.
EMOTIONAL TIES
A recent article in one of our leading political magazines concluded that the most powerful factor shaping world events are emotions.
My personal experiences taught me that emotions are distilled memories, expressing themselves in our everyday actions. The intensity of any emotion closely corresponds to the depth of the experiences that gave it birth, and it also corresponds to the character of the person — as it was shaped by his or her cultural, social and external factors — who is the bearer of this emotion. As we express ourselves through emotion, we present our humanness. Thus emotions are the most important force in everyone’s life, not only in the world of politics. To break and mold the world of emotions and its response mechanism may be the single hardest task for any family member of an Alzheimer’s victim.
Ann, my first Alzheimer’s patient, had been ill for quite some time, beautifully cared for by her husband and son, who was a Down-syndrome victim. Finally the task became overwhelming and he mad the most difficult choice of his life by entering her into the nursing home. He let go of her physically to a certain extent, but was completely unable to let go emotionally and to build a new life, a new balance in his life. He came to see her — as he was used to at home — very early in the morning, supervised all her care, her meals, took her for walks, and remained with her late at night for hours, even though she was fast asleep. We realized his need for transition, for maintaining control over their lives, as he was used to doing through the years of a long marriage. As months passed, we attempted to give him little responsibilities that actively concerned his wife, but helped him part with her bedside. We divided Ann’s shopping needs into several subcompartments when we realized that he liked to do shopping: he bought her a new spring dress one day, a little bow to match her new dress the next day and so on. Soon he began to show signs of increased vigor and a new spark shimmered not only in his eyes but in his entire being. He was able to act again, to take charge. This feeling seemed life-essential to him. Soon he skipped a visit or two, as he started to take command of his home environment again, doing spring cleaning, sorting out items of clothing Anne would not use again. At first he was very apologetic when he missed some visits at a mealtime, or did not come to sit with her at night. We tried to give him assurances that Ann was doing just fine and that time had ceased to exist for her. She smiled when she saw him, or just heard his voice, but she was unable to tell if minutes or days have passed between his visits. He listened carefully, discussed his fears and also his increasing successes in building a new life for himself. One day he announced that he planned a month’s vacation in Mexico. This total break from Ann, his home, and even country signaled the beginning of a new life for him. He returned suntanned, rested and relaxed — and with a lady companion. As he introduced Diane he told us that she was Ann’s long-time friend and she wanted to come and visit her. Since she had never come to see Ann before and there was an obvious relaxed atmosphere between the two, there seemed to be a significant friendship between them.
Since Ann’s room was the closest not only to the nurses’ station, but also to the entrance, Anne would smile and leap for joy, with the little fluttering motions of her arms extending all through her body, when she heard his voice, or even only his steps approaching, which she immediately recognized. Again, the same expression of recognition anticipated his bedside presence. Anne smiled with her big, violet eyes gazing toward the door, her arms fluttered in joy. But all of a sudden she stopped as “she” entered the room behind her husband. Ann’s little face became flushed and she shut her eyes tight. We knew from experience that those tightly closed eyes meant anger on her part. The flushed forehead and cheeks meant she was very angry. And hurt. And jealous. He patted her face and started talking to her, but to no avail.
“She changed quite a bit since I was away”, he said.
“Everyone changes all the time”, we answered, keeping the conversation on the theoretical level, as we ushered both of them out of the room. We invited them for a cup of coffee, where they were able to tell about the wonderful time they had, the first vacation in years for both of them, since Diane’s husband had died at home a year ago of an unknown illness, which would probably be recognized today as Alzheimer’s disease.
His visits were kept to a short time, once a day. He managed to rebuild his life again after all.
Ann, from the moment she realized the presence of “another woman”, always greeted him with tightly shut eyes. She was hurt, and jealous, and locked within the confines of an ill body, an afflicted brain, unable to express herself. She was unable to make the transition to a “second” place in his life. We never told him all this because he had every right to go on with his life. If we could have anticipated his plans, we would have suggested that he not bring his new companion with him, so Ann could stay reassured that she was the first, the one and only in his life and that she was safe and secure, all through her life, from her high school years on, to the end.
Doc’s wife, May, made a gradual, but steady transition toward a new life. The now flourishing support group she organized gave her a lot of insight into the disease, and she received reassurance from the experiences of many of the participants that it is a matter of self-preservation to continue one’s life on one’s terms. As the years passed and Doc’s disease progressed, he paid little or no attention to May’s visits. He paced in the corridors all day and soon found a lovely companion to pace with in Ottilia, who also had a need for walking and companionship. Often, after happily walking the corridors, May and Doc settled down for a cup of coffee and conversation. Sometimes they would go to a nearby ice-cream parlor for a short outing and would take Ottilia along. On one such occasion, as they returned, May pulled her hand away from Doc’s clasping fingers and placed them on Ottilia’s hand:
“Go on and walk with her nicely...” she said. Her action was a natural response to experience, which showed her that Doc was happiest in his present life when he could pace with Ottilia up and down the corridor.
All of a sudden May’s face became flushed, as she realized the weight of the moment:
“Oh my God, I am actually pushing my husband to another woman”, she cried out with such pain in her voice as if she had been stabbed and tears began to flow down her cheeks. I quickly ushered the two Alzheimer’s companions away from her and embraced her, leading her to a private room to talk. As we reached the room, she sank to a chair as if all her strength had left her, and cried for at least an hour, as if she had been mourning at Doc’s gravesite. This was the turning point for her in the realization, that — even though her husband was up and about physically— he was dead as far as their lives, their marriage, their emotional bond was concerned. She had given him up to a terrible disease that robbed him of his past and her from participating in his life. She felt better as her tears dried, which washed away the pain of guilt that she “pushed him away to another woman”. This in turn gave her freedom to rebuild her life. She came still every day to see him, so supply him with clean clothes and to enjoy ice-cream with him. But she never felt guilty again. Only the mourning never stopped, as she buried their life, and their marriage, fragment by fragment through the years, as Doc’s condition continued to decline.
A sense of helpless frustration often results in exaggerated responses on the part of the caregiver. I remember a lady in her eighties. She lived all her life with her daughter, who had never married and devoted all her energies to mother’s care. This close mother-daughter relationship became even closer when mother was diagnosed as having cancer. She took her to treatments, nursed her, stayed with her in unseparable proximity at all times. Unexpectedly the mother began to show signs of dementia and became utterly dependent. Eventually she was admitted to our unit. She was with us for a few months, and during this time both her cancer and her dementia greatly advanced. One day, unexpectedly but mercifully she suffered a major heart attack, as her daughter was visiting her. Paramedics were summoned and the lady was rushed to the hospital. Upon the daughter’s insistence a pacemaker was inserted, which helped to maintain a life filled with the pain of cancer, in a state of dementia, which prevented her from expressing her pain and her wishes regarding her life. Eventually she died in a hospital, her body a reservoir of all kinds of tubes and fluids, in utter misery, I am sure. The daughter survived her only by a few months. She never could build a life for herself, and with mother’s death her motivation and goal for life had disappeared. She melted into the shadowy world of unrealized potential that was created and perpetuated by a well meaning parent, who protected her from life’s hurts by keeping her daughter always at home, within arm’s length. Ultimately they became one-another’s victims without the hope of release from bondage...
Elaine, a member of our support group recalls a very hard childhood in which her mother represented an avenging angel more than a nurturing, loving presence in her life. When her mother became afflicted with Alzheimer’s disease, she did everything for her. Fearing that she might succumb to ill feelings toward her mother and unwittingly express them in deeds, she constantly questioned her own motivations. “Am I doing this out of love, according to my highest spiritual ideals, to help my mother, or out of hidden hostility?”, was her unresolved question when nursing home placement became necessary. She pushed herself to visit twice a day, without time off for her family and friends. Financial and physical exhaustion became the rule in her life. There was endless agonizing over tube feeding, life-support and all the related problems of advanced Alzheimer’s care. Yet no glimmer of love or closeness ever appeared in this mother-daughter relationship where bonding never occurred and no noble ideals could ever fill this gap. The health team could help her best by listening and through giving advice concerning medical problems.
Hope is an emotion that is frequently denied by the medical establishment when it comes to an illness they consider “terminal”. “We will not foster false hope”, is one of the professional’s favorite slogans. Surely, medicine has taken huge strides, performing medical miracles daily. But many physicians refuse to admit a higher presence, which helps to heal the incisions they made and who planted the seeds of the herb that helps to relieve headaches or gives the heart a stronger beat. If medicine could acknowledge God, or a higher force, there would be no false hope, just hope. Hope for a nice visit with a family member, or the hope of a quiet death in its ordained time. But hope would never be false. The skeptics, proponents of false hope could even — maybe for the first time in modern medical history — could examine the results of hope, and maybe prescribe it in the next century in the same way they discovered the healing effects of love in this twentieth century. Proponents of “detached” medicine eventually were forced, by the power of evidence, to write as a medical order on the patient’s chart: “TLC”. Tender, loving care. The next century may be the meeting ground of two worlds: knowledge and feeling. At present we frequently witness the devastation of lives deprived of hope. Husbands turning against the life of a beloved wife, or worse, persuading physicians to assist in suicide, as the dreaded word Alzheimer’s disease comes to the forefront, unbuffered by hope. These actions are claimed to originate in love, to spare the afflicted the years of slow death. But is the true motivating force the love of the spouse, or the love of self which cannot tolerate the sight of prolonged illness?
The above spouse could have participated in the life of his Alzheimer’s afflicted wife, with the hope of sharing a beautiful sunrise, or she could have been sustained by the active hope of making her life as much enfolded in love as never before; he could have had the hope of growing in love, understanding, humaneness, through this experience. Later he could have shared this kind of life with others, who want to build a life filled with compassion and not machines; but he missed out on all these opportunities of self-growth.
I remember a lovely couple, who celebrated their fiftieth wedding anniversary, as the lady had to be admitted for long term care to our unit. Sheila was of minute built, and like a little girl she hung onto her husband’s hand and followed him wherever he went. There was incredible love between them, as they looked with starry eyes at one another. He had been taking care of her for years with her progressive dementia, until he could not cope with the constant vigilance and sleepless nights that went into his efforts of protecting her from harm, brought about by her diminished judgment and confusion. He came and visited her daily at the nursing home. When he found her agitated, he would cuddle her and she could relax. Privacy at such occasions is of utmost importance. When she calmed down, he was able to persuade her to sit down at her meals or take a bath. He looked at this little shadow of a once beautiful woman with the pride and love of their first date, it seemed to us. He learned to live with her affliction and to entertain a little hope for each day. Hope for a nice day and a walk at the pond, feeding geese. Or hoping that she would be happy when he would take her to Mac Donald’s for ice-cream. Or that she would be happy seeing her granddaughter’s first baby, even though she did not know that this baby was their first great-grandchild. Only during the very rare moments of exhaustion did he pray for release to another, better world. But these dark feelings always gave way to a renewed hope of a good day, when they still could walk side-by-side.
The little stepping-stones of day-by-day experiences build life’s eternity, and its most magnificent promise is hope. No one should ever dare to take it away from anyone. Its bright light will pierce through every dark emotion and will make every wonderful moment in life more magnificent.
THE FIRST NIGHT
As in all things, the admission process, which from the new patient’s point of view takes twenty-four hours, is greatly helped by experience.
I learned that it is of great help to the new resident if the admitting nurse stays with him or her well into the next shift. At this point the admitting nurse becomes the “significant” other in the admittee’s life until new friendships develop. Frequently the admitting nurse will remain a very significant friend to the resident, no matter how well he or she became adjusted; there will be a memory, a feeling about this great change in their lives and one that was a part of it. The resident also needs great deal of reassurance, full-time attention, and whenever possible, I attempted to fill this need.
Irma arrived a couple of hours before supper. She had a bumpy start, with the tests, alarms and restraints. Her face was red from exertion as she struggled against the restraints. I sat quietly down next to her, attempted to make eye contact.
“I will open these, OK?” — I pointed to the restraint.
“OK”, she replied.
“We will throw this into the trashcan and never use it again...” I reassured her.
She smiled at me as I loosened her ties, took off the jacket and rolled it into a neat little bundle; I passed it over to her.
“Let’s go and find a trashcan”, I said and took her lightly by her arm, because her knee appeared a little weak. We found a trashcan in her room. After that we looked at her clothes, her pictures, and in seemingly in no time it was time for supper. Here at the table, I acquainted Irma with her roommate, Florence who was at a similar stage of the disease and of similar background: both were teachers with a large family. I brought myself a salad and since I was not on duty I had time to spend with them. I had a great time dining and went for a walk with them after dinner. As she became tired, Irma happily settled down in front of the large color TV with her roommate, and there they relaxed until it was almost time for the night shift to come on. I had time in the meanwhile to read her preadmission questionnaire, which stated that all her life she just loved TV. I let her indulge and this freed me to call her family to tell them all was well.
“What is she doing?”, they asked.
“Watching TV...”
“Then she is all right...”. I could hear them smile even through the telephone.
“Do you think we should talk to her?”, they asked.
I advised against it. First of all, the spell of her present quiet contentment would be broken, secondly, should she want to go home, we could not oblige. Then she probably would sit on the edge of her bed all night, awaiting the time when she could leave.
I also assured the family that I would call if there was anything that they should be aware of, but otherwise I wished them a quiet evening with the children and a lazy weekend, since tomorrow was Sunday.
“Don’t you want us to come in for a visit?”, they asked. “It is really up to you, but for Irma it would be better to establish herself in one world; it is hard enough for her to make sense of one setting, and she absolutely could not handle two for a while. You can call us a hundred times a day and night about her, but let her sort out her present life in an unhurried manner.”
I heard a quiet sigh at the other end of the phone.
“We have not had a free weekend in such a long time... I don’t even know what to do with it...”
“Have a good sleep and breakfast out with the children...”, I ventured my favorite solution.
“That sounds great”, she said... “We’ll do it. I’ll come in Monday, after work for a while. What should I tell her?”
“What would you tell her at home?”, I asked.
“Well... I would say, hi Mom, I am home... and we would have supper and watch television.”
“There is no reason you could not do the same here”, I said.
“I guess not... It’s almost like transplanting home here”, she said.
“That’s what we hope for”, I said. “I’ll order supper for you on Monday. Have a great weekend!”
By the time we ended the conversation it was almost ten o’clock at night. I joined Irma and Florence at the TV in the living room. They were watching an old time comedy movie about a girl’s boarding school.
“I know where I am”, Irma said. “In a boarding school!” She sounded triumphant as she found an explanation for her present scenery. “I like it!”
Since she was obviously happy with this solution I let her believe it. At least for now.
As the night nurse arrived I passed on this information to her. She laughed: “Why didn’t I think of this before!... Boarding school it is.
I introduced her to Irma and they became friends within minutes. I followed her to the bedroom, where Florence and Irma were tucked in for a good night’s rest.
As I arrived the next morning, Winnie told me that Irma slept like a baby all night, used the washroom at five, and settled back for another snooze.
“Quite different from Bob, remember?”, Winnie reminisced. We had a few years behind us in this unit, with many memories.
“How could I ever forget?”, I mused. Bob was a tall, thin fellow, whose mind had not retained any memories except his experiences as a fighting soldier in the second World War. After his return he got married, and led a happy and successful life until Alzheimer’s disease afflicted him in his seventies. He liked to walk, to eat and to smoke. While he had there three, he seemed a happy and uncomplicated man.
One day a lovely new nursing assistant arrived to our unit. She was of minute built, excellent nursing skills and was very conscientious. She spoke English with only a trace of oriental accent. Every morning as she arrived, she entered all the rooms to see how everyone was. She knew Bob was a new resident, so when she saw that he was awake, resting on his back, she leaned over him, wanting to say hello. Neither she, nor we were prepared for what was coming.
Bob let out a most horrible scream of pure terror.
“The Japs are coming, the Japs are coming!”, he yelled, jumping out of bed. He ran past the nursing station, through the door, and out to the street, throwing his long, skinny arms to the air, his open-backed hospital gown fluttering like a flag around his naked body, making his skinny legs look even longer and skinnier.
“The Japs are coming, the Japs are coming!”, he continued to yell.
It was the busy commuting time of the morning and he had many admirers. He was so fast, the two of us could not keep up with him. Like a Piped Piper, he ran in front of us a few yards.
“The Japs are coming, the Japs are coming...” Luckily we met a police patrol, who caught him and helped return him to the home.
During the following days we attempted to familiarize him with our new assistant, to no avail. Even though his reactions did not include flight anymore, tell-tale signs of intense fear manifested themselves each time he came face-to face with her. The veins on his neck would distend and heavy pearls of perspiration would cover his forehead. He instantly would switch his cigarette into a battlefield position, covering its glow with the palm of his hand, so the enemy artillery would not be alerted to its light. He would follow her every move from behind a larger piece of furniture... Again I was reminded that no war ever has any survivors, in the full human sense. Any unguarded moment brings the truth to the forefront: they are glued forever to that last battlefild and there is no escape.
Neither does one ever completely loose the fear of a totalitarian regime’s terror. After some thirty years and my walk to freedom, my palms still sweat and my knees tremble when I see a police car, which in my preflight days meant inevitable loss of freedom, maybe torture, maybe death... What the police cars mean for me is the same experience as an oriental face for Bob. And tragically, what the word ‘nursing home’ has become to mean for many elderly. A total loss of freedom of choice...
“Yes, I remember Bob”, I repeated and silently renewed my vow that whose lives I touch will be helped to attain the greatest possible freedom that can be achieved at their level of functioning...
THE FIRST BATH
Another large barrier to pass toward a healthy — and I may add — clean future, is taking the first step toward a shower, or tub. I have met only a very few Alzheimer’s residents who liked to wash, much less to bathe.
I remember my mother was like a duck all her life. She loved water with a passion, a trait I inherited. She liked to swim, to bathe, to do any housework that included water. After she suffered a massive stroke, leaving her right side paralyzed, she underwent a profound personality change. Formerly a mild mannered lady, she now became agitated easily, and was quarrelsome, throwing dishes at us when she did not care for the food that day. And she suddenly hated water. She would scream as water touched her body, even with the most gentle touch.
Luckily she recuperated. Life returned to her extremities and her old personality began to shine through again. She told us then that no one could ever imagine what a terrible feeling the touch of water had been to her overstressed nerves. The cold would feel icy, the warm hot, the waterdrops like rocks hitting mercilessly against her body. I tucked away this information in my memory for later use, which presented itself in our Alzheimer’s unit. By now we knew — through the diligent effort of researchers — that this disease is not a mental illness, not a mood disorder, not senility, but a disease of the brain. As a result, sensation may be altered in many cases, hence the dislike of water, I reasoned, each time we had to face this experience with a resident, especially a new resident.
For this reason, I never go into detailed information in advance. That day I took Irma by the hand and told her: “I will show you the bathroom”, and started to walk hand in hand. As we reached the shower room I showed her the shower head and turned on the water at a mildly warm temperature. I let her touch the water.
“Nice”, she said. I gave her a washcloth and she started to wash her face. “I’ll help you do the rest”, I told her, as I helped her undress. This was my lucky day. Irma seemed to like water and enjoyed a good backrub. She felt great after the bath and she was ready for a good day.
Fright about bathing may come from profound confusion, when the Alzheimer’s person does not recognize events and objects for what they are. He or she cannot recognize even a familiar bathtub of the old fashioned kind. The institutional tub, where you sit on a chair that lifts you into the water in a sitting position and the water covers you up to the armpits, frightens any uninitiated person. When you top this with a turning on the motor for the whirlpool — a well loved addition for any arthritic or aching body — they think they are being readied for electrocution. There is no way you can explain this to a new Alzheimer’s resident. We can give a demonstration with the cooperation of another resident, while he or she enjoys the whirlpool bath, but this is frequently a futile effort. There has to be a tried friendship between caregiver and the resident before permission for this experience can be granted.
I usually take the new residents to the shower, as I did with Irma. I can show what the showerhead is, where the water comes from and so on. If this leaves no impression, I bring in a washbasin to soak hands and feet and gently wash the rest, leaving this experience in their feelings as something neutral. The next time it will be better.
One thing may be taken for granted: that no two experiences in bathing — or anything else — will be the same in an Alzheimer’s unit. I have to be prepared for the possibility that — as the novelty of the “boarding school” wears off, Irma will refuse her bath. For this reason, no schedule for regular bathtimes can ever be closely adhered to in any Alzheimer’s unit, a fact that nursing personnel, unfamiliar with the implications of this disease, find hard to accept and manage.
“You don’t always feel the same about taking a bath”, I tried to explain the situation to a colleague, to whom rules and regulations were foremost. “This is not an institution. This is a home. It says so. N u r s i n g h o m e. At home — even in this one — one should have the liberty to say no to now and postpone action to later.”
Grudgingly she conceded, or so it appeared. In the spirit of faultfinding, she confronted me the next day:
“Did she ever get her bath today?”
“No, she did not”, I went into the game she began. As her face began to turn red with indignation, I continued:
“She did not get it today. She got it five minutes after she first refused it — yesterday. As soon as she felt like it. And since her Alzheimer’s disease helped her forget the ‘no’ she said five minutes earlier, she happily took her bath later.”
Miss Rules and Regulations turned around and quickly buried herself in one of the comfortable charts that have no independent wills to bother with.
GOOD MORNING WORLD
Barbara, our athletic nursing assistant, told me once what a frightening experience the first encounter with Alzheimer’s residents was for her at a time when Alzheimer’s was not yet a well known fact of life. She had just finished her schooling, where she was well trained for every eventuality, except Alzheimer’s disease.
It was her first day at work. Happily she entered one of several double rooms assigned to her that day. She went to the window, swiftly opened the curtains to let the bright sunlight in and said a loud and cheery “Good morning”, to the residents, who were still half asleep in their beds. Hearing her voice they sat up, so she continued: “My name is Barbara, and I am your help today. It is Wednesday, and the temperature is already eighty degrees. It is seven thirty and we have to be ready for breakfast in half an hour.”
As she finished her orientation, she realized, that one of the occupants was hiding under the blanket, and the other approaching her angrily yelling “Out! Out!” She was eager to oblige.
Since then we have learned — from experience and the now available literature — that an Alzheimer’s brain is incapable of processing information at such a pace. One has to say slowly as few words as possible and then wait until it has time to sink in. The barrage of Barbara’s actions and words were totally incomprehensible to the two Alzheimer’s residents. All they knew was that their quiet rest was interrupted and they were told something, which they should understand, but were unable to. They were disturbed and humiliated.
One of the first things I like to tell anyone entering the world of Alzheimer’s disease is to enter the world of feelings. Everything can be told, given meaning, through the senses. Our thinking, analytical approach to life has to be left behind when dealing with these residents. This task may appear hard since we were conditioned by our civilization from early childhood on to place little emphasis on our feelings.
Barbara now knows she should have entered the room quietly, could have sat down next to one of the residents, gently rubbed her back, given a hug and eased her out of bed. They could have walked to the window and felt the window pane with the palms of their hands, which would have told them that it was a sunny and warm day. Information which can start the day with a good morning. She would carry a drop of sunshine all day on the palm of her hand, the sight of green grass and a little sparrow taking his vigorous morning bath in a puddle left by last night’s rain in front of the window.
Then she would be helped into a light dress and shoes, and sit on the patio with the others, awaiting breakfast. These warm, but not yet hot mornings are here for us to be enjoyed. In our busy lives we seldom indulge in taking part in nature’s celebration; now there is time to do it, Barbara concluded. Sitting on the patio, they would observe another bird grooming himself, stretching his wings, combing every one of his feathers with his beak.
“Let’s do the same”, she said and stands up stretching her arms and giving a healthy yawn. Laughing they all get up and do the same. They feel part of nature at this point and feel so good! As they sit down, Georgette sings “God Bless America” and everyone chimes in. After that they sing some old time favorites, like “Old Mac Donald”, and even a new song, they managed to learn: “You are my sunshine, my only sunshine, you make me happy...” Someone brings Ann out to the patio and even she smiles, when she sees the happy scene.
The scent of fresh coffee coaxes us in for breakfast. Only a few beds have been made yet, only in the rooms where the resident was unable to participate in our housekeeping efforts. There are, two major divisions of the “helpless” variety: the ones, like Ann, who are physically unable to move about, and the other class, which was conditioned by society against doing housework. Ed and Bob decided that bedmaking and vacuuming were a woman’s job, another lady never did a household chore in her pampered life. Age seventy, or ninety coupled with Alzheimer’s disease is not very conducive to change. One can hope, one can tempt residents and there may come a day, when he or she wants to become useful and will lend a helping hand, but one should never force the issue.
After breakfast everyone comes back to their rooms, to finish getting dressed and wash hands. This is the time some family members rush in for a hug and bring clean clothes on their way to work. Then comes bedmaking, dusting, watering the plants, which should never be of the poisonous variety like poinsettias at Christmas time. The green of the leaves may be tempting, good enough to eat... These activities again bring back the home routine of most lives. Irma enjoys the chance to talk during our bedmaking; her roommate says her back is bothering her, so we do her bed, too.
As we all leave the rooms for other activities, the housekeeping staff corrects the dusty patches on dressers we left behind.
One of our residents — Henrietta — was a very proper, meticulously groomed and dressed lady with profound aphasia. Judging from her appearance and her good efforts to be a part of our community, one never would have guessed that she quietly secured all kinds of “goodies” from cookies to steaks, in her pocketbook, which she always carried, and then hid its secret contents under the lining of the trashcan in her room. One day her secret was discovered in her presence. With the fierceness of an ancient dragon protecting the entrance of its cave, she posted herself in front of the trashcan and protected her “survival” foods at all costs. From then on the trashcan was investigated and cleaned after each meal, but never in her presence. She never complained of not finding her treasures. Perhaps the outwitting process and the hiding was the important factor in her experience.
After our housekeeping effort we liked to join the general population for some sing-alongs. Song and dance was the bread and butter of our lives. Even the most non-verbal person was able to enjoy and participate in music. Henrietta — even though aphasic — was able to sing a lovely Irish ballad she learned as a child and was eager to share with everyone, any time.
And so the routines of our unit moved along, every day, with comforting, but never dull, sameness.
ACTIVITIES
On a non-Alzheimer’s unit there usually is a comfortable schedule in a day’s organization, with activities tucked into the may daily events.
The very short attention span and total dependence on others of an Alzheimer’s resident necessitates the efforts of non-stop, individualized activities, arranged into non-tiresome twenty-twenty-five minute long sessions. Everything is an activity, beginning with the early morning lounging and exercise, dressing, through bedmaking, meals, singing, TV watching to midnight star-gazing. All of our employees on the unit instinctively followed this unspoken, but very evident demand. Once we had a very stressful morning that just did not get off the ground as it usually did. It rained and we could not go out. Henrietta had one of her infrequent seizures that scared her roommate. Dr. Mac decided to finish some of his physicals before breakfast. The air-conditioner broke down and unfamiliar faces arrived in the unit to fix it. The residents were swarming about like bees looking for their queen. I was trotting behind them with their medications, which they usually took calmly and naturally at breakfast, or mealtime, but now refused vehemently. Finally the medications were passed. Dr. Mac left, the air-conditioner helped to cool the heated rooms and moods and the “Kid” managed to take everyone to the living room to cool off and settle down, so we could hope for a better afternoon.
Just then Miss Rules and Regulations popped in for a visit, stared into the calm and quiet living room, then came to my desk and whispered with quite a bit of indignation:
“Are you aware that one of your assistants is sitting down, watching television?”
“Yes I am! and may God bless her for it”, I added. I knew where Miss Rules was coming from. She too was caring for twenty residents on the “outside” unit, one of her nursing assistants called in sick, there were tests to be done, charts to be finished, residents leaving for the day to be signed out, and here we were, sitting around, watching TV... I still enjoyed a rare moment of mischief I permitted myself, when I replied:
“This is our activity...”
Angrily she turned around to leave, when the door opened and two inspectors entered. So she stayed, probably to enjoy the proper authorities finally “setting us straight”. Fate was doubly kind to us that day. First, because the inspectors had not come an hour earlier. Second, because after they walked through the rooms and corridor, they stopped at the desk and said: “We have never seen such a quiet Alzheimer’s unit.” They paged through the medication book.
“They are not even on any of the usual calming medications! Very good!” they said and left. My friend quietly followed them. And I must confess, we all felt that our hectic and hopeless-looking morning was well rewarded.
Through the years I have found that people usually belong into two distinct categories: one group has learned the joy of being creative and was taught that patient work brings its own rewards. These people seem always able to find the good side of everything and make the best even of the most impossible situation. This early training and knowledge shines through even at an old age. They are the ones that never complain that there is not enough entertainment. They are happy in making embroideries or knitting baby blankets for their great-grandchildren.
In an Alzheimer’s situation, Eleanor may be termed as such an individual. She was used to helping people relax, serving them food and comforting them during the many transatlantic flights she attended. Now she is perfectly happy to walk up to people, rub their backs and sing to them.
Henrietta had a team of wind-up toys she used to entertain her grandchildren with. Now, she shared them with others. There was a little drummer-boy drumming to a hopping bunny and a race car pushing against a seal that balanced a ball. Even Bob and Ed enjoyed them from a dignified viewing distance, and later even helped in winding them up, so they would work in unison.
And there is another type, I call the “consumer personality”. These people never learned to be creative, nor to extend self in any way for anyone. They forever complain that there is nothing to do, nobody entertains them, and so on. They feel that they are better than the rest of the residents and the world should revolve around them. They don’t want to get their hands dirty with gardening. The philosophy of instant gratification in our consumer society gives no real satisfaction to its adherents, and it is the root of unhappiness in many lives deprived of creativity. Some people nurture the image of a grandmother who did a lot of handknitting for family members after a full day’s work, and so they are at least able to relate to ideas of unselfishness and industry. But there is another generation already grown without this memory. These are the young parents who invade the shopping centers around holiday times, their poor little children dragged through crowds, or locked into shopping carts to find the items that will make the holiday. They are exhausted and nervous and scream at their whining babes, instead of going home, baking cookies and stringing garlands with them to celebrate life and family in a creative fashion. These are the people who become unable to form any real emotional attachments, since they were conditioned to the norms of a “throw-away’ society, where the Christmas-tree is on top of a trash-pile by December 26 and Christmas puppies and kittens have to be abandoned, or discarded in some other way. Even the quiet little goldfish is flushed down the toilet after it has served its “holiday” purpose, and the changing of water in its little tank becomes “too tedious’. A superficial observer would think that this new breed of human beings is very selfish. But as you look around in their late-life in a nursing home, you will discover how deprived they are of any real value that contributes to our humanity. These are the children who never learned to belong or to open up to feelings, and as they aged they grew a thicker and thicker crust around their hearts. They believe that if they let their feelings come to the surface, their whole world will disintegrate, together with their defenses. So they remain cold and aloof to the end.
I remember what an uphill struggle it was to convince authorities to permit visits of babies and animals into nursing homes. When Flora Bell suggested babies, the conservative professionals raised indignant eyebrows at the idea: “She should know better... Children would bring in childhood diseases and babies would get sick from old people’s germs...”, they argued so children’s visits had to wait another decade, just as Barbara’s suggestion to have animal friends come in; they cited “dog germs” and similar excuses against their coming. But every visionary’s time arrives one day, and both babies and visiting pets were eventually permitted to come.
The regular nursing home population almost instantly parted into two distinct groups. A small gathering of friendly little old people, the ones who had memories of the depression, who had grandmothers who did many kind things for their families, or who came from a less automated culture, who reached out for and cuddled babies, or patted the animals.
The other, larger group of spectators made loud remarks: “Who needs these babies here? Let their mothers take care of them”, or “Look at these naughty animals, they get more attention than we...” These were probably the children who had to give up their beloved little pets after the first puddle in the living room and were trained to value carpeting more than life.
As Alzheimer’s disease gives way to unmasked feelings, both children and animals found a very nurturing environment in our unit. Family members were encouraged to bring pets and children for visits, and this became a regular part of our activity schedule. Dan would walk his dog up and down the corridor with pride and little hands would reach out and pet the dog, side by side with the old. Both enjoyed the same world of no-pretense and of love. Even the animals preferred the company of Alzheimer’s residents.
One day one of our residents happened to be in the living room of the general floor for activities when a visiting dog arrived. The dog looked the gathered forty or so residents over in seconds and straight as an arrow, marched over to our Alzheimer’s person, who greeted the animal with a hug that shared her entire love filled being with him; he never left her for the rest of the official visit.
We always tried to incorporate activities into the flow of daily life, in a very unobtrusive manner and always offered choices, if the resident so preferred. Establishing a well functioning activity schedule, a thoroughly documented behavior record is helpful. If there are two or more “sundowners” in the unit, a walk for these people can be incorporated into the unit’s activity schedule, at the best time for all concerned, as it can be established from these records.
Planned rest periods before meals and bedtime, with singing or just listening is an important activity to any successful Alzheimer’s unit.
Stackable “busy-boxes” are helpful on days when their is nothing else to do, especially during the long rainy fall and spring seasons. Coloring books and crayons in one box, dolls of different sizes, sponges substituting for building blocks and yarns to wind into large, soft balls were the favorites at our place.
Just as no word can ever substitute for real experience in our everyday life, it is even more so in the world of Alzheimer’s disease sufferers. Seasons have to be felt, to be experienced, the world has to be touched to know that it is there and that the Alzheimer’s person is a part of it. For this reason every activity schedule should be highlighted by outings that encompass all the seasons.
I remember the first such outing in our unit. It was Christmas time and we wanted to experience the lovely lights and decorations in our town. Since it was bitter cold that year, we planned sightseeing via a van. As the van arrived, Dan energetically secured his place next to the driver. His usual quiet self melted away as he commented: “This is beautiful! I am happy!” His obvious joy melted all our hearts and stole the spirit of the season into our lives.
We had hayrides and visited duck-ponds, pumpkin patches, ice sculptures and shopping centers. The crowd and the insult of too many stimuli at the latter convinced us to drop this experience from our schedule and keep it only for a select few who were able to enjoy it. Making pictures of all these activities and collecting them with other memorabilia in an album is a nice addition to winter activities and family sharing. One family member had some especially good pictures representing each season. They were enlarged and we hung them on the wall of the corridor. Many of the residents recognized themselves in them and frequently spent some time looking at them, since these pictures reminded them of some very pleasant feelings.
Our unit never had much use of written labels placed on each piece of furniture with the particular item’s name. The labels create a busy appearance and serve as constant reminders to the residents that they should know what these labels mean, but are unable to figure them out as they are probably in an advanced stage of Alzheimer’s.
Interestingly the regular street “stop” sign on exit doors — with a little perseverance — did work with most residents. Even if it would have worked with only one in twenty, it would have been worth-while to apply these signs to exit doors, to save the resident from embarrassment and others too, who probably would have followed in the initiator’s footsteps.
The use of music would merit an entire book as one of the most important and most therapeutic aids in an Alzheimer’s sufferer’s life, when used with know-how, diligence and perseverance. I mention know-how because the regular singing sessions of the general population usually begin by handing texts and sheet music to the participants. Alzheimer’s residents get uncomfortable and anxious from here on, with their fight and flight responses already set in motion. Some other, more advanced cases may try other methods: Irene, a non-verbal resident, who was unable to distinguish the purpose of objects started to chew the sheet of paper with the music on it as soon as she received it; she was quite happy with this activity until a well meaning person approached her: “This is for singing, we don’t do this...” and took away her paper. Irene was convinced that this was a snack and she did not want to give it up. She started to scream, and at this point the fight and flight response of all the others came into full bloom. I leave the rest to the reader’s imagination.
Singing sessions are for the residents to derive joy and satisfaction in whatever fashion they are able to do so. We usually ask Henrietta to sing her Irish ballad. Everyone enjoys her voice and claps at the end. This happy mood initiates Georgette’s “God Bless America”. After the mood is set, we sing all the tunes that everyone knows. Since my repertoire of American children’s songs was scanty at best, we stuck for a long while to “Old Mac Donald” and “Twinkle, twinkle, little star”, repeated several times. The more active residents liked to dance to these tunes and then settle down again and chime in with us. My children were enrolled in a music education class using the pioneering Kodaly method. The researchers of this music philosophy compiled original folk songs of many nations. They also published a collection of beautiful American folk songs. This little treasure book of simple songs became my favorite companion and teacher, through which we shared many happy, song-filled afternoons with our residents.
We found that music helps to accomplish even our most mundane activities. If someone did not like to do a particular activity of daily living, we used a tune and completed the activity with a smile. One frequently heard a handy little tune with many different texts: “This is the way we brush our teeth, brush our teeth, brush our teeth...”, or “...make our bed, make our bed....”, or any other words, that fit the occasion. The tune helped to evoke memory and coordinate thought and action.
One day Providence sent a lady well trained in music to us as a volunteer. She was also interested in the Kodaly concept of music education and through it discovered that pentatonic tunes were more readily grasped and retained than other tunes by our residents. She composed little one-liners, fitting the personality of each resident, containing their names, too, like
We concentrated on each new song for a week and interestingly, not only did all residents learn and remember the text and tunes, but they were able to remember their fellow residents’ names too. Our “Music Lady” always arrived with a smile and a guitar, settled down in the midst of our residents, had a few good words, and encouraged interaction. Her influence long reverberated after she had to move to another town.
Another very important activity was the religious experience in each resident’s life. Religious ceremonies and songs are ingrained in most people’s lives from early childhood on and remain a comforting experience throughout their lives. This should be used to the fullest in any nursing home, and especially in their Alzheimer’s units. If the nursing home is fortunate enough to have a chapel and weekly religious service, Alzheimer’s residents should be taken into consideration by including those one or two hymns that are familiar to them, so they feel a part of the religious community. The brightness of candles, the sound of bells, the quiet monotone of prayers remains meaningful to most to the end. In nursing homes where no chapel nor religious services are available, meaningful services which serve the same purpose can be created.
Again, I have to reach back to our early days in Alzheimer’s care. One Sunday, as many of the people on the general floor left for church with their families, Flora Bell and I decided to bring a little “church” to our residents. We gathered them into the living-room around a large table, placed flowers and a candle on it, sang a familiar hymn, then read the first couple of verses of the Twenty-third Psalm. Eyes began to shine and a nice, warm feeling began to swell up our throats and moisten our eyes. Just then a newly admitted gentleman started to sing a Hebrew religious song in a beautiful voice. It was quite long, but the solemn mood kept everyone listening. As he finished, there was a moment of silence, then Georgette sang her “God Bless America”. This impromptu service was probably one of the most meaningful religious services I have ever attended and I am sure God must have smiled lovingly when He saw the devotion of this little community.
All through the years I tried diligently to find a minister, or a student of ministry to come, familiarize with our Alzheimer’s residents, and hold services on any day of the week. To us a holiday would be the day they would come. All the ministers of all denominations in our town turned down our appeal since we did not have any funds to match our request. Apparently God cannot be served for “free” in our society... We had residents, who belonged for decades as tithing church members to a nearby church, yet the servants of this church never came to see them after admission. One resident’s priest came a few times a year, ran in, unannounced, interrupted the then ongoing activity, thus rendering his “religious” visit meaningless. Had he taken the time to announce his coming, and sat down and extended himself to all of our residents for only ten minutes, much good could have been gained... Since those days, however, the religious community’s attention has been reached regarding the needs of Alzheimer’s residents, and there is hope that appropriate services will be forthcoming.
Here I have to add the caution that one must never try to impose religion on anyone, much less on an Alzheimer’s person, unless he or she is a willing participant and derives something positive from the service.
It is also noteworthy that during our younger years we often indulge in beliefs that the universe is a purposeless, mindless, spiritless machine, and that its only function is to revolve around our needs. But, having worked for almost twenty years with the old and the ill, I have never found a person who did not need God and love and hope at the end. There is some instinctive hope for an afterlife in everyone even if his or her official religion did not include this concept. Maybe the time will come when God and hope will become integral parts of our lives, and medicine, too, in exchange for our present practices based on material and technical logic alone. Reliance on the purely material aspects of life may result in a love-deprived healing communities which easily permit the patient and physician to slip into an attitude of “hopeless giving up”.
CHEMICAL RESTRAINTS
Unobtrusive appearing chemical restraints are a lot harder to overcome than the very obvious physical restraints. State and local regulations now insist on only occasional and well documented use of this latter. Hopefully this will eventually hold true for chemical restraints as well.
From my early Alzheimer’s experiences on I learned that both physical and chemical ties become unnecessary when one helps a resident to a maximum feeling of well-being through helping them in all the functions they are unable to handle, and at a pace their illness demands.
Until this can happen, great vigilance is needed on the part of the caregiver, who should try to answer several questions simultaneously and repeatedly, charting times and circumstances when the Alzheimer’s resident becomes agitated.
Patty, a second stage, up and about Alzheimer’s sufferer was observed around noon-time the first day becoming increasingly agitated. Her face turned red, with slight perspiration above her lips. It was time to get ready for lunch and preceding this we helped everyone to the toilet. As Patty finished, her agitation was gone — without medication. She needed desperately to relieve herself, but did not know how to translate this feeling into action. Her agitation entered her communication chart, and the lady not only became continent overnight, but never needed a chemical restraint again.
Residents may be on assorted medications for various medical problems; the listed side effects of these medications may or may not include changes of mood but still may cause such changes in some Alzheimer’s residents. Christina received medications to correct heart and bloodpressure problems. Every morning, about an hour after she received her medications, she became almost violent. The time was faithfully entered into her behavior record, and the same time frame was observed for this behavior every day except when we had to hold these medications before bloodtests and administer them at a later time, her violent behavior occurred later. Her medications were measured at a therapeutic level, yet her behavior indicated some intolerance. Dr. Mac found this significant enough to discontinue these medications under close supervision. The result was dramatic. The obviously chemically induced stress subsided in a few days, she never needed chemical restraints, and as a bonus, she did not need any bloodpressure medications either, as she settled into her new life-style in the unit.
Any new, minor, but irritating medical problem may result in increased irritation if the particular cause is not discovered, orders may be given for any of the popular mood altering medications, instead of finding the real cause for a newly developed agitation. A corn, an ingrown toenail, a toothache and constipation are among the least considered causes of agitation. For this reason I made it a habit to look over all my residents regularly from top to toe to discover anything that may be painful or bothersome but which they cannot express or complain about.
We managed to withdraw — in time — ninety-nine percent of our residents from chemicals: we were substituting laxatives with high fiber diets, sleeping pills with lots of fresh air and a cup of warm milk, and so on. All this added up to feeling comfortable and resulted in a calm behavior.
Occasionally though, both physical and chemical restraints become necessary and are in the realm of the resident’s momentary need. But as it is with physical restraints, so it should be with chemical restraints, to be kept for very rare occasions and when all else fails.
EMOTIONAL TIES
A recent article in one of our leading political magazines concluded that the most powerful factor shaping world events are emotions.
My personal experiences taught me that emotions are distilled memories, expressing themselves in our everyday actions. The intensity of any emotion closely corresponds to the depth of the experiences that gave it birth, and it also corresponds to the character of the person — as it was shaped by his or her cultural, social and external factors — who is the bearer of this emotion. As we express ourselves through emotion, we present our humanness. Thus emotions are the most important force in everyone’s life, not only in the world of politics. To break and mold the world of emotions and its response mechanism may be the single hardest task for any family member of an Alzheimer’s victim.
Ann, my first Alzheimer’s patient, had been ill for quite some time, beautifully cared for by her husband and son, who was a Down-syndrome victim. Finally the task became overwhelming and he mad the most difficult choice of his life by entering her into the nursing home. He let go of her physically to a certain extent, but was completely unable to let go emotionally and to build a new life, a new balance in his life. He came to see her — as he was used to at home — very early in the morning, supervised all her care, her meals, took her for walks, and remained with her late at night for hours, even though she was fast asleep. We realized his need for transition, for maintaining control over their lives, as he was used to doing through the years of a long marriage. As months passed, we attempted to give him little responsibilities that actively concerned his wife, but helped him part with her bedside. We divided Ann’s shopping needs into several subcompartments when we realized that he liked to do shopping: he bought her a new spring dress one day, a little bow to match her new dress the next day and so on. Soon he began to show signs of increased vigor and a new spark shimmered not only in his eyes but in his entire being. He was able to act again, to take charge. This feeling seemed life-essential to him. Soon he skipped a visit or two, as he started to take command of his home environment again, doing spring cleaning, sorting out items of clothing Anne would not use again. At first he was very apologetic when he missed some visits at a mealtime, or did not come to sit with her at night. We tried to give him assurances that Ann was doing just fine and that time had ceased to exist for her. She smiled when she saw him, or just heard his voice, but she was unable to tell if minutes or days have passed between his visits. He listened carefully, discussed his fears and also his increasing successes in building a new life for himself. One day he announced that he planned a month’s vacation in Mexico. This total break from Ann, his home, and even country signaled the beginning of a new life for him. He returned suntanned, rested and relaxed — and with a lady companion. As he introduced Diane he told us that she was Ann’s long-time friend and she wanted to come and visit her. Since she had never come to see Ann before and there was an obvious relaxed atmosphere between the two, there seemed to be a significant friendship between them.
Since Ann’s room was the closest not only to the nurses’ station, but also to the entrance, Anne would smile and leap for joy, with the little fluttering motions of her arms extending all through her body, when she heard his voice, or even only his steps approaching, which she immediately recognized. Again, the same expression of recognition anticipated his bedside presence. Anne smiled with her big, violet eyes gazing toward the door, her arms fluttered in joy. But all of a sudden she stopped as “she” entered the room behind her husband. Ann’s little face became flushed and she shut her eyes tight. We knew from experience that those tightly closed eyes meant anger on her part. The flushed forehead and cheeks meant she was very angry. And hurt. And jealous. He patted her face and started talking to her, but to no avail.
“She changed quite a bit since I was away”, he said.
“Everyone changes all the time”, we answered, keeping the conversation on the theoretical level, as we ushered both of them out of the room. We invited them for a cup of coffee, where they were able to tell about the wonderful time they had, the first vacation in years for both of them, since Diane’s husband had died at home a year ago of an unknown illness, which would probably be recognized today as Alzheimer’s disease.
His visits were kept to a short time, once a day. He managed to rebuild his life again after all.
Ann, from the moment she realized the presence of “another woman”, always greeted him with tightly shut eyes. She was hurt, and jealous, and locked within the confines of an ill body, an afflicted brain, unable to express herself. She was unable to make the transition to a “second” place in his life. We never told him all this because he had every right to go on with his life. If we could have anticipated his plans, we would have suggested that he not bring his new companion with him, so Ann could stay reassured that she was the first, the one and only in his life and that she was safe and secure, all through her life, from her high school years on, to the end.
Doc’s wife, May, made a gradual, but steady transition toward a new life. The now flourishing support group she organized gave her a lot of insight into the disease, and she received reassurance from the experiences of many of the participants that it is a matter of self-preservation to continue one’s life on one’s terms. As the years passed and Doc’s disease progressed, he paid little or no attention to May’s visits. He paced in the corridors all day and soon found a lovely companion to pace with in Ottilia, who also had a need for walking and companionship. Often, after happily walking the corridors, May and Doc settled down for a cup of coffee and conversation. Sometimes they would go to a nearby ice-cream parlor for a short outing and would take Ottilia along. On one such occasion, as they returned, May pulled her hand away from Doc’s clasping fingers and placed them on Ottilia’s hand:
“Go on and walk with her nicely...” she said. Her action was a natural response to experience, which showed her that Doc was happiest in his present life when he could pace with Ottilia up and down the corridor.
All of a sudden May’s face became flushed, as she realized the weight of the moment:
“Oh my God, I am actually pushing my husband to another woman”, she cried out with such pain in her voice as if she had been stabbed and tears began to flow down her cheeks. I quickly ushered the two Alzheimer’s companions away from her and embraced her, leading her to a private room to talk. As we reached the room, she sank to a chair as if all her strength had left her, and cried for at least an hour, as if she had been mourning at Doc’s gravesite. This was the turning point for her in the realization, that — even though her husband was up and about physically— he was dead as far as their lives, their marriage, their emotional bond was concerned. She had given him up to a terrible disease that robbed him of his past and her from participating in his life. She felt better as her tears dried, which washed away the pain of guilt that she “pushed him away to another woman”. This in turn gave her freedom to rebuild her life. She came still every day to see him, so supply him with clean clothes and to enjoy ice-cream with him. But she never felt guilty again. Only the mourning never stopped, as she buried their life, and their marriage, fragment by fragment through the years, as Doc’s condition continued to decline.
A sense of helpless frustration often results in exaggerated responses on the part of the caregiver. I remember a lady in her eighties. She lived all her life with her daughter, who had never married and devoted all her energies to mother’s care. This close mother-daughter relationship became even closer when mother was diagnosed as having cancer. She took her to treatments, nursed her, stayed with her in unseparable proximity at all times. Unexpectedly the mother began to show signs of dementia and became utterly dependent. Eventually she was admitted to our unit. She was with us for a few months, and during this time both her cancer and her dementia greatly advanced. One day, unexpectedly but mercifully she suffered a major heart attack, as her daughter was visiting her. Paramedics were summoned and the lady was rushed to the hospital. Upon the daughter’s insistence a pacemaker was inserted, which helped to maintain a life filled with the pain of cancer, in a state of dementia, which prevented her from expressing her pain and her wishes regarding her life. Eventually she died in a hospital, her body a reservoir of all kinds of tubes and fluids, in utter misery, I am sure. The daughter survived her only by a few months. She never could build a life for herself, and with mother’s death her motivation and goal for life had disappeared. She melted into the shadowy world of unrealized potential that was created and perpetuated by a well meaning parent, who protected her from life’s hurts by keeping her daughter always at home, within arm’s length. Ultimately they became one-another’s victims without the hope of release from bondage...
Elaine, a member of our support group recalls a very hard childhood in which her mother represented an avenging angel more than a nurturing, loving presence in her life. When her mother became afflicted with Alzheimer’s disease, she did everything for her. Fearing that she might succumb to ill feelings toward her mother and unwittingly express them in deeds, she constantly questioned her own motivations. “Am I doing this out of love, according to my highest spiritual ideals, to help my mother, or out of hidden hostility?”, was her unresolved question when nursing home placement became necessary. She pushed herself to visit twice a day, without time off for her family and friends. Financial and physical exhaustion became the rule in her life. There was endless agonizing over tube feeding, life-support and all the related problems of advanced Alzheimer’s care. Yet no glimmer of love or closeness ever appeared in this mother-daughter relationship where bonding never occurred and no noble ideals could ever fill this gap. The health team could help her best by listening and through giving advice concerning medical problems.
Hope is an emotion that is frequently denied by the medical establishment when it comes to an illness they consider “terminal”. “We will not foster false hope”, is one of the professional’s favorite slogans. Surely, medicine has taken huge strides, performing medical miracles daily. But many physicians refuse to admit a higher presence, which helps to heal the incisions they made and who planted the seeds of the herb that helps to relieve headaches or gives the heart a stronger beat. If medicine could acknowledge God, or a higher force, there would be no false hope, just hope. Hope for a nice visit with a family member, or the hope of a quiet death in its ordained time. But hope would never be false. The skeptics, proponents of false hope could even — maybe for the first time in modern medical history — could examine the results of hope, and maybe prescribe it in the next century in the same way they discovered the healing effects of love in this twentieth century. Proponents of “detached” medicine eventually were forced, by the power of evidence, to write as a medical order on the patient’s chart: “TLC”. Tender, loving care. The next century may be the meeting ground of two worlds: knowledge and feeling. At present we frequently witness the devastation of lives deprived of hope. Husbands turning against the life of a beloved wife, or worse, persuading physicians to assist in suicide, as the dreaded word Alzheimer’s disease comes to the forefront, unbuffered by hope. These actions are claimed to originate in love, to spare the afflicted the years of slow death. But is the true motivating force the love of the spouse, or the love of self which cannot tolerate the sight of prolonged illness?
The above spouse could have participated in the life of his Alzheimer’s afflicted wife, with the hope of sharing a beautiful sunrise, or she could have been sustained by the active hope of making her life as much enfolded in love as never before; he could have had the hope of growing in love, understanding, humaneness, through this experience. Later he could have shared this kind of life with others, who want to build a life filled with compassion and not machines; but he missed out on all these opportunities of self-growth.
I remember a lovely couple, who celebrated their fiftieth wedding anniversary, as the lady had to be admitted for long term care to our unit. Sheila was of minute built, and like a little girl she hung onto her husband’s hand and followed him wherever he went. There was incredible love between them, as they looked with starry eyes at one another. He had been taking care of her for years with her progressive dementia, until he could not cope with the constant vigilance and sleepless nights that went into his efforts of protecting her from harm, brought about by her diminished judgment and confusion. He came and visited her daily at the nursing home. When he found her agitated, he would cuddle her and she could relax. Privacy at such occasions is of utmost importance. When she calmed down, he was able to persuade her to sit down at her meals or take a bath. He looked at this little shadow of a once beautiful woman with the pride and love of their first date, it seemed to us. He learned to live with her affliction and to entertain a little hope for each day. Hope for a nice day and a walk at the pond, feeding geese. Or hoping that she would be happy when he would take her to Mac Donald’s for ice-cream. Or that she would be happy seeing her granddaughter’s first baby, even though she did not know that this baby was their first great-grandchild. Only during the very rare moments of exhaustion did he pray for release to another, better world. But these dark feelings always gave way to a renewed hope of a good day, when they still could walk side-by-side.
The little stepping-stones of day-by-day experiences build life’s eternity, and its most magnificent promise is hope. No one should ever dare to take it away from anyone. Its bright light will pierce through every dark emotion and will make every wonderful moment in life more magnificent.
CHAPTER VII
DIET AND NUTRITION
My own childhood memories include a story — maybe one of Aesop’s fables — about a fox and a stork. As the story went, the fox invited the stork one spring for dinner. He prepared a delicious meal of all the things he liked and anxiously awaited the stork’s arrival so he could hear about all the distant lands the stork has seen on his long journey back to his home. After the stork arrived they sat down to the table. The fox served himself and offered his guest to do the same. Although the table was laden with food, it was served on a flat plate and in such a way, that all the poor stork could do was to look, but could not manage to eat one crumb. His long beak knocked against the bottom of the flat plate, the pieces of meat were too big for him, with big bones left in them, the sweets and berries were not to his liking. Finally he clapped angrily at the fox and departed, vowing never to return.
Standards of diet and nutrition have firmly been established for almost all kinds of illnesses and situations, except Alzheimer’s disease.
Marguerite was a constant walker, with a pretty good appetite. She ate all her meals and took her snacks, which were served at the change of shifts to maintain a calm atmosphere as the day shift left and the afternoon shift arrived. Even so, she gradually started to loose weight. Examinations revealed a healthy lady, who worked off her calories as soon as she had taken them in. High calorie meals and four high calorie snacks were requested for her and with this management the loosing trend slowly was turned around. As she started to regain her lost pounds, she became more relaxed and the four snacks were tapered down to two, which maintained her weight at a desired level.
Fred had — to all appearances — no appetite at all. He frequently would look at his food, then get up without eating. One day, when we were reminiscing about the smells of old time kitchens and opened up some jars of spices to sniff the lovely fragrance of herbs and spices, we realized that Fred almost buried his nose into the jar and still could not smell anything. This sense being impaired, looking at a flat looking plate — let’s say — of white turkey meat and mashed potatoes must be a highly unappetizing experience. We started to “spruce up” Fred’s plates with fresh vegetables that brought color to each. He also adored ketchup on nearly everything he ate. With this color-change his appetite returned dramatically. From then on, eye appeal was a must on our unit.
There was one day each week that the caregivers dreaded. It was called “chicken day”. Lovely fried chicken was served every Wednesday, complete with bones, a cut that included the fragmented little pieces of chicken ribs. Not even the most accomplished self-feeders could handle them. It was a race against time to prepare and debone twenty plates of chicken before the meal got cold.
Meals with hard to digest food items, like hot-dogs and hamburgers and beans can easily upset an elderly person’s stomach. Mary may not have eaten these food items for years at home. Now she gobbled them down since they were in front of her. She did not know anymore what the food item was and she was served this meal weekly until one day we were able to make the connection between hot-dog and beans and her rare episodes of agitation.
Georgette could eat and enjoy anything she could pick up with her fingers. This held true for most residents. But how do you pick up mashed potatoes?
Ground meat for Ann always arrived cotton cry, with no gravy, or any other binder. Her plate predestined her to inhale all the food in front of her, even with the most careful feeding.
Rules and regulations insist on a certain combination of cereals. As toasts almost inevitably arrive cold and soggy in an institution, I requested cold cereal instead, so the residents could eat it with fingers in its natural form, or with milk. According to regulations this couldn’t be done. Dunking the toast was suggested.
I myself would rather die of starvation than eat a dunked anything, and many of our residents felt the same way. So the toasts were left on the trays and residents were not only cheated out of a certain grain — although these toasts were usually of bleached flour, which may act as powerful irritant to even a healthy brain — but of much needed calories too.
I touched upon the need for finger-foods, or “meals on the run” type warm foods for constant walkers.
In other words: food items should look colorful and appetizing. They should be served in a safe consistency. Foods should have a high caloric value, and be free of bleaches and appropriate for the delicate digestion of an elderly person. To achieve all this, an interested and dedicated dietary department could be a great blessing to an Alzheimer’s unit.
MEALTIME
Every meal should be a nourishing and nurturing experience for everyone. But how can you nourish and nurture a group of people whose attention-span is seldom more than twenty minutes at a time when the serving of trays for these many residents takes at least that much time?
Mealtime began at our unit about one hour before the trays actually arrived. First we helped all the residents to the washrooms, so they could arrive calmly and clean, when it was time to eat. After having finished this task, an employee remained with them to have a light conversation with the residents, mostly about food, or to share the experience of enjoying the scent of herbs that corresponded with the daily menu. This time also included singing.
Some of our residents who enjoyed domestic-type activities entered the dining-room with an employee and helped to set the tables. The tablecloth could be crooked and four forks could end up at one table-setting, but no correction was made in the presence of the resident. No poorly set table should ever be the ticket to humiliate someone. After the tables were set, the residents joined the group in the living-room. The remaining caregiver would now straighten out the tablecloths and place silverware according to the residents’ needs at each setting. There were some who could not use knife and fork anymore, so only a spoon would remain next to the napkin for this resident. As the foodcart arrived, one food item — the main fare for that meal — would be placed at each setting and prepared appropriately. The resident who could handle a spoon only, would find the meat and vegetables cut in bite-size pieces. When this preparation was under way juice was served in the living area so that only one glass remained on the table for milk, next to the coffee cup, in which decaffeinated coffee was already prepared according to individual tastes. The main goal for these pre-meal preparations was to cut down on activities and the clutter of items on the table, which would be distractions to the Alzheimer’s patient. This way the twenty minutes of attention span could be fully utilized to achieve both nourishing and nurturing activities.
Seating is also of prime importance to maintain a calm atmosphere. We found that at no individual table should more than two residents be seated. If the two residents were seated facing one another, enough “elbow room” was left for them, so they could comfortably handle their own meal without getting confused about table mates’ utensils and food. This would be unavoidable if four residents had been seated at a table. Doc and Dan sat at one table, facing one another. Both had impeccable table manners and enjoyed a quiet meal. Ann, Betty, the little lady who liked to play with her dolls, Fred and Ottilia were seated at the large, family style table, for they needed some help with feeding. Mary and georgette shared another table, for they were inseparable and enjoyed one-another’s company. We caregivers were seated around the family table with a cup of coffee, not only to help, but also to observe any changing habits in behavior, abilities or appetite. One day I saw that Georgette held her fork thoughtfully in her hand, rubbed it, turned it from side to side, finally, with a smile of new discovery, she started to scratch her head with it. We thus observed the moment when Georgette’s memory lapsed and she forgot what a fork was along with its purpose. Unobtrusively we removed the fork and the knife and left the spoon. She ignored the spoon and started using her fingers. The same day a note was sent to the dietary department to accommodate her new “fingering” eating habit with appropriate changes: to send a baked potato instead of the mashed, the egg hard-boiled, instead of soft and so on. This way, she was able to continue to enjoy her meals, on her level, on her terms. As her mental functions declined even further she could not understand her need for dentures. They became a completely foreign object to her and she refused to wear them, so her diet had to be changed again.
When Fred started to have speech problems, which signaled possible swallowing difficulties, his diet was adjusted accordingly.
Betty liked to line up her little washable dolls on the table and finger-fed them along with herself, wiping her fingers occasionally into her hair and clothing. After the meal we took the dolls and Betty for a bath and shampoo. The dining room was quiet, where everyone did his or her own thing and enjoyed the meal.
The new dietitian frequently and very unobtrusively visited our unit and learned to know each resident by name and habit. She offered suggestions for possible substitutes, which were very helpful. Properly decorated and served meals became the rule of the day. This was not only a blessing to residents and caregivers alike, but was also safe and appetizing from an Alzheimer’s point of view.
Sometimes Doc’s wife came to share a meal with him. Through years of visiting, she was familiar with all the residents in this unit and considered them part of her extended family. Frequently, when Betty was in a bad mood and dunked her dolls into the soup instead of eating it, May would sit next to her and guide her actions into a more useful channel again. Henrietta would invite May to her “house” to share her dessert and coffee, and Maria would show her the torn front cover of a ladies’ magazine displaying the picture of a luscious looking lasagna, undoubtedly as a gesture of friendship. Maria carried this picture with her all day, for months, until it finally disintegrated. Not only was lasagna her favorite dish, but it probably reminded her of the good aroma and feelings when she masterfully prepared this dish for her large family.
After the meal everyone was helped to the bathroom and an afternoon nap, either in bed or on one of the reclining chairs. It was on these occasions and during some sleepless nights that I wished every resident owned a recliner.
The more domestically inclined residents helped to collect the soiled table cloths and wipe the tabletops with a moist sponge. Henrietta always looked for a sink to wash some dishes, but we did not have one. Eventually we substituted a new washbasin, where she rinsed styrofoam cups and was satisfied.
VISITS
We soon learned that it is very helpful to residents — and caregivers — to have some advance notice of visitors, whether they are physicians making rounds, family members, repairmen or any other passers by in this unit.
Ida kept lines of communication open either by asking for the time, or by sitting for a few minutes next to the nurse as she was working on charts. With a little reassurance and smile, Ida attempted to cooperate in any way she could. One day I heard her scream at the top of her lungs in her room. I rushed in, only to find her in the company of an assistant, who was unfamiliar with the workings of this special unit, holding her at arm’s length by her hand, trying to pull her in the direction of the door. “Come on, hurry, we have to go to the examination room to see the foot doctor!” By then Ida had her feet firmly planted on the floor and would not move an inch. She was so frightened and agitated, that we had to give up the idea of foot doctor for that day. Had we known of the doctors planned visit and the time of his arrival, we could have used one of Ida’s walks to the desk when embracing her around her shoulders we could have guided her a few steps further into the examination room with ease.
One quiet winter afternoon, as we all gathered in the living room for some reminiscing and singing, since we had open visiting hours, Irene’s family arrived. They looked for Irene first, then not finding her in her room, proceeded to the living room. As they reached the door, they called out a very loud and cheery “Hello everybody, how are you...” The suddenness and amplitude of the voices was totally unexpected and in complete opposition to the prevailing, quiet atmosphere of the room. The results were dramatic. The residents jumped up, their afflicted nervous systems visibly irritated to the utmost. Wanting to resolve this unexpected stress, they started to run around in all directions of the compass. The visit was ruined not only for Irene and her family, but for all twenty people residing in this unit.
From then on we suggested to everyone to move with the “flow” of the unit. If there was an activity, participate in it for a while, or just sit down quietly, until the resident to be visited was ready to accept the visitor. Visiting in this manner expresses interest and provides dignity, which every human being needs.
Alzheimer’s residents — like every one else .— have shifting moods, days that are better than the others; this also has to be taken into account by the visitors. Good communication between staff and family are essential, especially in the beginning. The family visitor will learn — if time is taken to do so — upon arrival, if the family member had a good night’s sleep, if he or she ate well — all the little but essential details in a person’s life — and then proceed with the visiting. As family members and staff become more acquainted with one another, even a glimpse of the corner of the eye and a smile becomes enough to communicate to the visitor: “All is OK... have a nice visit...”
One also needs to know — when it comes to occasional visitors, whether friends or family members — if the resident prefers to see them while they are healthy and on their own. Many times people who never were a favorite part of the resident’s life visit and cause undue stress. It is helpful to get a list of such acquaintances to help protect the resident from unwanted visitors. Most of these visitors are satisfied to “make an appearance”, either to show some interest to the family of the resident, or to satisfy their own idle curiosity. In each case, a glimpse from a same distance usually meets with their satisfaction; a cup of coffee and some words from the nurse fills their self-allotted time of twenty minutes visiting and they leave soon after without upsetting anyone.
It is more difficult to handle family members who feel guilty, for not helping the family caregiver more effectively. Such visits usually come at holiday times most significant to them. Their arrival is loud, to show everyone they are there. The moment they set foot into the unit they begin to criticize everything, from food to the layout of rooms, how the hairdo of the resident has changed and that nurses did absolutely nothing to make “their mother better...’ One attempts to offer explanations into the nature of the disease and offer the help of support groups, usually to no avail. After these visitors bring profound turmoil to the unit and frighten the resident, they become confused themselves, because they sense that their family member has entered a world they don’t understand and are unable to follow. They leave, not to be seen or heard from for another year.
In such instances I like to insist on a pre-arranged time for their visit, at which time the prime family caregiver can be also present. This — above else — helps to maintain the calm atmosphere that is essential to all Alzheimer’s residents — and also helps to initiate the family interaction that came to a halt as a result of the family member’s illness. Many times hurt feelings coupled with sheer exhaustion on part of the caregiver prevented communication. Such visiting times, as described above can become the base of a healing process within the family. Guilt and hurt feelings are baggage that no person should carry through life...
There are times when family or friends have some special plans for an outing with the resident. Such plans can and should be discussed with the resident’s caregivers in the facility, but no mention should be made to the resident, since time has lost all meaning, and only the now is perceived. The resident will want to translate these plans into immediate action and if this is not followed through, irritation, agitation is the result. Even when the happy day arrives, the resident may feel “out of sorts” due top a variety of reasons, which may or may not have a connection with Alzheimer’s disease, but these feelings of discomfort are always — by necessity — filtered through the Alzheimer’s disease, resulting again in non-cooperation and agitation. If the resident is thoroughly examined for possible physical causes and none is found, one has to understand that the resident does not feel up to going out that day. The Alzheimer’s afflicted person is still an individual with likes, needs and wants. He or she is also very frequently an old person who has difficulty dealing with change, and this is amplified by Alzheimer’s disease. In any case, he or she as a person still has a right to choose; if the choice is really important to the resident, he or she will let everyone know about it in his or her usual mode of expression. It is always wise to listen very carefully to these expressed desires, because by not heeding them, the family may go through a very hard time at these outings, and no one would benefit by it.
Theresa was in her eighties. She had ten children and each had several children and grandchildren. The family would have filled a small town. Family holidays were very important and I am sure, Theresa, the mother was the one who had instilled the feelings in her children that gave rise to this closely knit family. None of the family members would ever have dreamt of leaving mother out of a Thanksgiving or Christmas dinner. All through the day, children, grandchildren, great-grandchildren kept visiting her, seven days a week, from morning until bedtime. Theresa was proud and happy when she looked upon her visitors, whom she frequently did not recognize anymore as family members, just as someone “so nice”, or “pretty”. There were two sons she always knew as her sons. One Thanksgiving morning, the oldest, Martin, arrived to take mother home for dinner. He was quite busy with the preparations of the day and also had to drive quite a distance to pick up Theresa. As he arrived and started to help her into her coat, Theresa vehemently resisted his efforts.
“No!.... No!.....”, she said in a voice we both knew and which signaled that her mind was made up and she would not easily change it. We took her to the bathroom, checked her shoes for comfort, went through the usual “checklist”, to no avail. I suggested to give up on the idea, because she probably would spoil everyone’s holiday. Martin checked with the rest of the family and came forward with the decision to take mother home anyway. She would relax, once she was at home, they hoped. The ride took almost an hour one way. Three hours later he was back., with a little apologetic smile, as if to say: “You were right...”. I mentioned that within the next few days the family could bring some of the turkey and special sweets to the home. We would set a large, separate table in the living room, the family could have their separate Thanksgiving dinner. Martin was grateful for the idea and followed through. The family had a nice Thanksgiving, which included mother too. They sang, made pictures, and played with the great-grandchildren. Not only the family, but Theresa enjoyed the day, too. As she began to tire and get agitated, the family left, and she had a good nap and a feeling of a happy day. This experiment proved so successful that all subsequent holidays were handled similarly from then on.
As our unit’s residents stay — in most cases — was very long-term, all family members became friends and members of a larger Alzheimer’s family within the facility. Their interaction included celebrating holidays, substituting for one-another, and visiting with every resident, as if they were their own family members. Seasonal in-house parties are well appreciated affairs, like a Fourth of July picnic in the yard, with box lunches and singing, ball playing, or Christmas-time sing-alongs. Such experiences leave a glow of happiness and belonging to one another that cannot be severed, not even by the disease.
Visits with a resident in the terminal stages of any disease is difficult, but with an Alzheimer’s afflicted person even more so. Family members not only feel utterly helpless, but many a times they wonder if it really is of any benefit to their loved one if they spend time with them.
As experience shows over and over again, all Alzheimer’s afflicted are aware of their environment and don’t like the feeling of abandonment. Although they may not be able to open their eyes, or move their limbs, they still perceive a hug, the holding of hands and a whisper of “I love you...”. Time is precious and too much demand is made on everyone’s time in our daily lives. but a short visit of even a few minutes — I am sure — means a lot to the resident. And it will be even more meaningful to the visiting family members, after their beloved has passed away, to know they were there and did everything they could.
We like to shun thoughts of death and it is difficult to come to terms with mortality. In time, the medical profession may learn to face and handle this problem, too. Kuebler Ross has already laid a good groundwork for this process, which I hope will continue. One experience will forever stay with me, which — after some hesitation — I would like to share, even though it may provoke some controversy.
When Mary’s disease progressed to its terminal stage and she slipped into a coma, her children arrived for a decision-making visit. They gathered around her bed, embraced her, fluffed the pillow under her head, made all the loving gestures helplessness brings about at the bed of the gravely ill. There was some crying and praying. Mary — to all appearances — did not react, neither to voice nor to touch. All of a sudden, by some impulse, one of the sons took her hand and said:
“Mom, we are all here and we love you. We also love one another and will always love and help one another, even when you are in heaven. We promise. You were a good mother to us. The best. We will be all right. You don’t have to stay. It is OK for you to go.” Mary looked up for a moment and smiled. Took one breath — and left...
Later I asked the son, what prompted him to say all these words? “I had a feeling that she was very tired and would like to go, but did not want to cause sorrow to us”, he replied. Mary had a beautiful life and a happy death, inspite of Alzheimer’s disease. I can almost hear as she said “Yea!” within her soul, as she heard her son’s words of release. “Yea!” He gave her the freedom of a last decision and she happily took it.
A well informed volunteer may be one of the greatest blessing at an Alzheimer’s unit. there are always more tasks to be accomplished than hands to do them. To take the wanderers for a walk, or sort buttons, or play dolls. Also to help holding hands with the ill is of great help. In order for the volunteers to feel comfortable, they need to know a lot about the disease itself, and about each individual they are entrusted with. We found that the most successful volunteers were the ones who were assigned a specific task with specific residents. When expectations are clearly outlined and the route leading towards the goal is explained, success and a feeling of satisfaction will follow in both the volunteer and the resident. Volunteers soon will become part of the Alzheimer’s family: this sense of belonging and feeling of comfort is the highest goal of any Alzheimer’s unit.
DISCHARGE
There is a good chance that an Alzheimer’s resident will never be discharged from a nursing home. The process of this disease is a slow but steady deterioration, for which — at the present — there is no cure. Should discharge from a facility occur, it probably will be another facility, usually due to financial consideration, or the caregiving family’s move to another part of the country; or it may be necessary to admit the resident to a hospital, due either to complications of Alzheimer’s disease, or to an unrelated problem.
Should the former occur, a very thorough transfer record will not only help the admitting facility and the family, but most of all the resident. No matter how considerately the process of discharge is conducted, the resident will be greatly affected by the change. It almost seems inevitable that after a transfer, the Alzheimer’s resident will begin to function at a lower level than up to that date, and there is a good chance that he or she will never regain the lost functions. It is for this reason that any change, even a room change in the same facility on the same corridor, or even the change of a roommate should be avoided, if at all possible.
Fred was admitted to a hospital with pneumonia. He ran a fairly high temperature with some wheezing, which started on a Sunday afternoon. Dr. Mac was out of town and the physician standing in for him admitted Fred immediately. Alzheimer’s disease was a rather obscure illness in those days, so it was no wonder that fifteen minutes after admission the hospital admitting nurse called in a rather anxious tone of voice, asking us if we knew that Fred was violent. “We know there is a potential for high agitation, but he is a very gentle man as far as we know”, I said. “Tell me, what happened?”, I asked fearing to get the very answer I got a second later:
“Fred tore out five IVs in the past ten minutes, and punched the respiratory technician in the nose. We had to tie his hands and one foot and his body to the bed, and he still manages to get out of these restraints.”
Poor Fred, I thought to myself, how could you manage all that insult and pain, without understanding that people want to help you!
“Would it help you if I come down after work and together we may sort things out? In the meanwhile he could take fluids by mouth; Fred loves to drink anything, at any time. A change of orders from IV medications to another route may be very helpful. I also will ask the family to come with me to visit Fred.” The nurse thanked me for the help and two hours later the family and I were at his bedside. Fred was beside himself, shaking the siderails, chewing on restraint strings, winding the call-light’s cord around his neck. His hand was red and swollen from the restraint; his respiration had improved a little. It seemed that from all the straining his lungs were ventilated at an accelerated pace and he was able to get rid of a lot of mucus with each cough. Almost at the same time as the family, the physician also arrived, as nurses alerted him of the unsuccessful attempts to start an IV and the impossibility of maintaining it, even if a start had been successful. The family looked at the situation in horror.
“We are going to take him home at our own risk”, they said. “Please prescribe something that may be given to him in the home”, they insisted.
“What can you achieve at the nursing home?” — the physician asked.
“Almost anything, as long he has the freedom to walk about when he feels like it and does not have to hand on tubes and wires, like a puppet. He is at home there...”
At the family’s insistence he gave permission to return Fred to the nursing home, with medications that were second-choice in the medication protocol, but which could be administered to him easily.
“Call me if his condition worsens, the physician said. “I’ll come out any time, even during the night, if you need help.” Silently I said praises to God for physicians who understand and care...
Ida was not so lucky. When she sustained her hip fracture she needed an operation, which meant a fairly long stay in the hospital. She too was a walker, and had serious difficulty with speech and understanding. She functioned well in her familiar surroundings, but any change of personnel frightened her. Any change of routine affected her behavior in every way: she became uncooperative, lost her appetite and refused to participate in activities of daily living. Shortly after her admission to the hospital the phone rang. This time we were ready and offered hands-on assistance. The family member was already on his way to the hospital to help calm her. I just arrived when she was transferred from the emergency room to her room. The nurse was in the process of “orienting” her to the room: this is the call light, and this is the button for the television... My friend looked with wide open eyes at the nurse. As the nurse left the room I followed to help with a few hints:
“You know, she has Alzheimer’s disease and she did not understand a word you said...”
“She looked OK to me, although I hear she did not do too well in the emergency room”, she replied.
The family was consulting with the physician, when we heard again her ‘fight and flight” scream: someone had attempted to draw some blood for tests. She wanted to run, but could not and was now in severe pain. I reminded the nurses that this lady is unable to ask for any pain medication: it has to be anticipated. The family confirmed my statements, and remained at the bedside until she was readied for surgery. After surgery the family and our staff kept watch and provided support to help her overcome this trauma. While she resisted all activities of daily living and physical therapy when was alone with the hospital staff, she did rather well when a familiar face and smile encouraged her. She came back to the nursing facility a little more dependent with feeding and bathing, but she was able to reestablish independent ambulation, which was crucial for her.
Marguerite, too, was an independently functioning, easy-going Alzheimer’s afflicted person. She needed to be helped in her activities with supervision only, for once she started doing something, she was unable to stop independently. She was unable to express herself verbally, but endlessly repeated the last sentence she heard, until another sentence came across to her. This constant talking usually irritated everyone present in the room, and the sentence she heard most often from her fellow residents was: “Be quiet!”. So she walked about, saying in a constant monotone: “Be quiet, be quiet...!” This sentence was constant and continuous, like the murmur of a waterfall. for a while this became our “white noise” in the unit and in time people did not even notice.
She needed an elective surgery for which she was admitted directly to the hospital. The orientation process about the lights, buttons, specimen cups to be filled was thorough and very hospital-like. When orientation was finished, the nurse brought in a supper tray and left the room, only to return in a few minutes, when she realized that Marguerite had picked up the tray and thrown it across the room, with its contents spilling out to the corridor. Then Marguerite started to run, following some people into the elevator in an attempt to get out of the hospital.
“She looked so with it”, the nurse complained, “And so attentive. She even repeated my instructions, so she wouldn’t forget them.”
“Well, you see”, I commented, as I brought Marguerite back from the hospital lobby, where I had run into her as I came for a visit. “She needs a minute or more to process a word and then some more time, to put it into action. she repeated some of your words, because that is the only way she could talk, and she will continue your last word for hours. She is unable to make sense of a lot of items, placed in front of her, so she got rid of them the best way she could, and ran...”
“Well, we can’t have this behavior here”, the nurse said. She proceeded to get orders for physical and chemical restraints. After surgery — which was very successful — in order to keep her from running, the hospital placed her into a “geri-chair”, a glorified wheelchair with a tray in front, looking like a baby’s high chair. A few days in this contraption will do wonders in demolishing anyone’s self-esteem. Her hands were secured to the sides of the chair, so IV lines would stay undisturbed and a urinary catheter was dangling to the floor. She was sedated in order to keep the above arrangements intact. Convenient for the chronically understaffed hospital personnel, but devastating to an Alzheimer’s sufferer. Because of a heavy snowstorm, I came to visit some three days after the surgery. It was mid morning. Marguerite sat in the corridor so nurses could keep an eye on her. Her eyes were droopy from sedatives, but she recognized me with a smile. I asked for permission to take her into an unoccupied, bright and spacious lounge and to untie her. As I did so, I realized that her joints were stiff from immobilization and it took minutes before she began to move her arms and bend her elbows on her own. I tried to stand her up, but her knew remained bent and she made no effort, to move them; her Alzheimer’s afflicted brain forgot, in a few days, how to give and receive signals that would activate walking. It took several weeks of training, after hospitalization, before her ambulation was reestablished. Had she been permitted to remain ambulatory, and to use the bathroom facilities at will, neither the urinary catheter, nor the sedation, nor the immobilization would have come into play.
Placement in the observation room, a low bed and more consideration in the prescription of medications, liberal visiting hours for the family could have spared a lot of anguish caused by unnecessary restraints.
Until physicians and hospitals get the “hang of” how to approach an Alzheimer’s afflicted resident, it is a very good idea to personally follow up on all hospitalized Alzheimer’s patients. Hospitals are almost always glad to get some helpful hints — and a helping hand with the very difficult task of caring for the Alzheimer’s patients. This in turn will slightly halt the deterioration process brought on by change. Limiting hospital stays to the absolutely minimum days necessary is a definite bonus.
BEHAVIOR MANAGEMENT
The title of this chapter appears suspiciously manipulative. It would look so much nicer, if we could say “Helping people to achieve contentment”, or if we even could daringly use the word “happiness”.
Every human being differs in genetic makeup and because of environmental and social factors, and personal experiences. these factors are present in all Alzheimer’s disease sufferers, too, but many times they are hidden under layers of conflicting and inappropriate responses, brought about by the disease process. Many times layers of social niceties are swept away by Alzheimer’s disease, and the basic personality, untamed by customs and education becomes exposed, often to the dismay and embarrassment of the family.
Georgette always was a very matter-of-fact lady, who never minced her words; she also enjoyed a good sense of humor, a table-slapping kind of laughter. She also liked the same matter-of-fact approach from her environment. When someone tippy-toed into her room, she gave a very belittling kind of a look, as if to say: “What’s wrong with your foot? Can’t you step out decently?...” She would never cooperate with the timid caregiver. If you wanted to achieve your goal, you had to bring in humor and laughter. Then she would do most everything.
Frank, Doc, and many others suffered from what has become known as “Sundowner’s syndrome”. They had an urge to walk during the day, but even on quieter days, they just had to walk, to undress, to become “hyperactive” around sunset. It was at this time that appropriate activities were needed. They required plenty of elbow room, walks around the block, playing ballgames indoors; anything that could relieve their anxiety of the hour. I also found that drawing of the shades and turning on a soft light helped. The same type of hypersensitivity could be observed on overcast days in some residents, with increased agitation and limited tolerance to bright colors, if increased ultraviolet rays were irritating to people whose lesions may have affected the color sensing areas of the brain. This theory has never been proven, but drawing of the shades on overcast days did help sometimes, and it is worth trying when all other methods fail.
There are people, who have been “loners” all their lives, who shunned social life in any shape or form. These people usually have experienced sever difficulties in their lives: went through depression, wars, or personal tragedies that remained unresolved. They usually learned to cope and survive on their own, and for this they needed solitude all their lives. All of a sudden, they are thrust into communal living, where one person or another insists that they start playing volleyball, or bingo in their eighties. this “diversional therapy” goes against their grain, yet they are unable to express this, lacking verbal ability and the power of reasoning. One way out of this difficult situation — and many times the only resource they have — is to physically fight for their rights. This behavior has been named — very appropriately — “catastrophic reaction”. It always surfaces when they feel cornered and are denied any freedom of choice.
Bob went through the second World War. He never resolved the deep human conflicts that accompany such an experience. He also had to live in a communal setting for many years while he was in the army, so privacy was and remained to him very precious. One day a new employee entered his room during his after-lunch siesta and urged him to come and play ball with the others. Bob first mumbled a quiet “no”, which grew louder and louder, into a full blown, very loud cry of “nooooo”, with the intensity of a wounded animal’s helpless cry, pushing the assistant out the door, with all the strength he could summon. This was a memorable occasion, and a fine time to explain to my assistant never to force an issue with an Alzheimer’s resident, else it ends in a similar reaction. One can return a few minutes after a “no” and by then the resident may have forgotten that he or she said no, and follow a suggestion.
The same situation arose when Dorothy, a constant walker, took her lunch sandwich and started — as usual — to munch and walk at the same time. Just then a well meaning but uninitiated nurse commenced to correct the situation, taking away her favorite corned beef sandwich in the middle of a juicy bite. This was more than Dorothy could bear. She grabbed the nurse’s hand holding the sandwich pushed her against the wall and retrieved her lunch. The nurse cried out loud for help which soon arrived from the general floor. Poor Dorothy was held down by four people and placed into restraints. She did not touch food for the rest of the day and did not sleep all night until the wee hours of the morning. We let her rest late, and — thanks to the Alzheimer’s forgetfulness — all was OK.
This, and many similar experiences, show the absolute necessity of a steady staff who know the residents better than they know themselves. A look, a tiny motion of the hand may reveal more to a person who knows her charges, than a library full of unapplied knowledge. It may spare residents catastrophic reactions. I found that the greater percentage of such occurrences were the result of inappropriate handling and intervention. Knowing how to “handle” Alzheimer’s residents may also spare the caregiver from possible injury.
Henrietta, too had been in the army, as a nurse, with combat-nursing experience. All the community centered years brought about in her an exaggerated sense of personal property. Anything that was in her semi-private room was hers, even her roommate’s belongings. We attempted to help her sort matters out, but with absolutely no success. The situation was resolved by moving both ladies clothes into a storage closet on the floor, leaving only a couple of items in each personal closet, all of which nevertheless inevitably wound up in Henrietta’s closet. The families were told the rationale behind our actions, and we gained their support. Many times Henrietta moved the entire wardrobe under her mattress. Fortunately the new arrangement cut down considerably on the family’s ironing chores.
Henrietta also liked to save and collect food items under the lining of her wastebasket, or under her mattress. Tact and non-confrontation helped to solve this problem behavior.
Prejudice nurtured through eighty years cannot be eradicated, especially not in a person suffering from Alzheimer’s disease. Clara was a feisty little lady who intensely disliked anyone from another race or any “foreigner” with an accent. After admission to our unit, her family changed physicians and the new doctor not only was from another race, but had a foreign accent too. As soon he opened his mouth the first second of the first visit, catastrophic reaction was in full bloom. “Get out of here”, she screamed at the top of her lungs. “Get out of here you dirty foreigner, you wet back, you...”, and assorted names followed, while she diligently attempted to kick her doctor from a sitting position. The physician stood there stunned for a few moments. As her tirade came to a momentary halt, he attempted to use humor, hinting to her behavior: “You like good all American boys, like Al Capone...!”
“That’s right”, Clara chimed in. “I sure liked him! He was my next door neighbor and you could not ask for a better one!” We just had to follow up on this bit of information and it turned out to be true. Clara really used to have Al Capone for a neighbor... Her physician had made diligent efforts through years of care, trying to befriend this old lady, with no success, although I suspected Clara really enjoyed these monthly encounters. But we never again assigned anyone with an accent to care for her.
Wandering was frequently mentioned in the previous pages. This, too, is a part of the disease which one cannot change or cure. One can put it to good use, however, to maintain mobility, increase appetite, and to promote sleep, by giving plenty of elbow-room to let residents pursue this ingrained need. Attempting to change this behavior with medications, that help “relax” the resident may cause problems in balance, unsteady gait and ultimately may result in a fall, and the “relaxed” person may end up in the hospital with a broken bone. If the resident has walked so much that he appears exhausted and still cannot stop, one — of course — has to intervene, as one would with any persevering activity, and help the resident relax by sitting down with him, or her, giving a glass of milk, or cookies and put on some calming music of the elevator kind, or a Lawrence Welk video-tape. This latter always worked in bringing about relaxation. It appears that not only the Lawrence Welk style music works magic, but all the dance and harmony of action in his shows. Alzheimer’s residents internalize these shows and accept it as a substitute for their own action; they seem to live through the dancers by watching them and they are visibly satisfied.
Occasionally people other than Alzheimer’s were admitted to the unit suffering from various mental and emotional problems. Our Alzheimer’s residents immediately picked up the “difference” in their diagnosis and behavior and systematically left these residents out of their sphere of activities. They almost formed an Alzheimer’s club within the unit, unable to tolerate the frequently noisier, more demanding, behavior of these newcomers. Their behavior showed a drastic change while these residents remained in the unit. Agitation mixed with fear and apprehension became the order of the day.
It is important to keep a record of behaviors judiciously. We keep a separate record for each resident. It is a simple sheet listing the following data: his/her name, room number, the specific unexpected behavior, the preceding event, date and time. Their uses are varied: it helps to orient new employees to the resident, it may help physicians in deciding on the use of medications. It also may help in planning meals and activities, just to mention a few possible uses.
While it is imperative to know your Alzheimer’s residents’ likes and personality, the guidelines for a successful unit are remarkably simple. I remember once seeing an old movie, I think with Ingrid Bergman, where she played a missionary, saving starving Chinese children during a Chinese revolution. One of the Chinese officials attempted to dissuade her from this activity, fearing she could not accomplish this task. Of course he could not change her mind. “Why can I not raise them?”, the heroine of the film asked. “All I have to do is to feed them, clean them and love them...” The same principle will maintain an Alzheimer’s unit as well.
MEMORY
One of the first and foremost signs of possible Alzheimer’s disease is a loss of memory. At first it is subtle, yet the patient knows that there is something very wrong. He forgets where he put his car keys. He forgets the names of co-workers and later even the names of family members. He or she desperately tries to cover up this deficiency and solve this embarrassing problem on his own. All of a sudden diet and nutrition, vitamin pills, and exercise become paramount, although prior to the onset of this illness a healthier way of life did not very much interest this person.
Finally the memory deficit becomes tragically obvious and help is needed. Thanks to the efforts of support-groups, the Alzheimer’s Association and the ensuing professional interest of physicians and researchers, there is a battery of tests that may help to determine if the memory loss is due to Alzheimer’s disease, or if it is a condition that mimics this disease but which is entirely treatable. Only a few years ago we were not so fortunate.
Eve was in her seventies when she was brought in to our Alzheimer’s unit with profound confusion and all the classic signs of Alzheimer’s disease. This disease had just become popular with the medical establishment, but no diagnostic procedures were uniformly established in ruling it out. Eve always was a very independent and strong-willed woman. Her husband had died two years ago. She assured her children, who lived out of town, that she was all right and she could manage well, both financially and emotionally. the children — all adults and with families of their own — were so used to her being the family’s decision-maker, that they said a fond good-by after the funeral and left. they kept in touch through the telephone and all went well until two years later they got a telephone call from their mother’s neighbor asking them to come, because “there was something wrong...” As they arrived with the next flight, the neighbor told them that she had frequently found Eve in the middle of the cool California night, sitting on her doorstep, completely confused, not knowing who she was or where she lived. She did not recognize her, either, the neighbor added. After the neighbor returned her home, Eve would lock the door in apparent panic from the “intruder”. The family found Eve’s door locked. They had a key and let themselves in only to find their mother unkempt, unwashed, undressed cowering in the corner of the kitchen. She looked frightened, pale and weak. She did not recognize the children, but was too weak to protest. They washed and cleaned her and took her to the family physician. As she was showing severe memory loss, the physician recommended nursing home care, with the diagnosis of Alzheimer’s disease. That same week she arrived at our facility. As the family learned that Alzheimer’s disease is incurable they sold the house to pay for Eve’s expenses. In the meanwhile Eve settled into the life of the unit. She received well balanced, nutritious meals, her nutritional deficiencies were corrected, and she soon began to improve. Within a few months, she was back to her old self again, with not a hint of memory deficiency, or any other problem. As it turned out, after she began her life alone, and after the immediate concerns were taken care of after her husband’s death, she had a lot of time to think and to be alone. She gradually slipped into depression and neglected her meals. By the time the family was alerted she had been living on coffee and donuts for months, the local donut shop being within a short walk from her house. She would buy a dozen donuts and live on it for a week. She was under- and malnourished. Now with her nutritional status corrected, she was ready to go home, but there was no home to go to. Thus ensuing heartache. Financial problems could have been avoided had she gone through the more thorough examination process that is now available and becoming more and more sophisticated and accurate.
As residents arrive with Alzheimer’s diagnosis, the disease usually is already in its advanced stages with profound memory loss and the inability to sort out even the closest family relationships. Female caregivers — whether they are daughters, or wives — inevitably become “mother” to the afflicted person. Husbands very often become boyfriends again, someone to flirt with, or simply someone “nice”. Sons are often the most mistreated family members by an Alzheimer’s disease sufferer: seldom are they recognized by mothers, or fathers. So many times I heard them called “that man”, or “who are you?”, or worse: “Get out of here...!” In such cases an awful lot of reinforcement is needed, so the family members can differentiate between the disease and its dictates. May’s first support group was truly a groundbreaker in this direction. All the things that were meaningful in childhood are remembered fondly. Georgette still could name all her cats and dogs on the farm some sixty years ago, but would never recognize her wedding picture. She pointed at her picture as a bride and said: “Mother”. As we pointed to her husband standing next to her, and asked who he was, she gave no answer, probably lacking the proper word, or the memory of the man, or very likely both.
Memory — we found — can be enhanced, when it is associated with a pleasant experience. Once we attempted to put residents’ current pictures on their room-doors so they would know which room belonged to them. The idea never got off the ground: none of my twenty residents recognized themselves in these pictures. Yet they always identified themselves on our photos of the seasons, as they were standing at a summer pond feeding ducks, or in the middle of a pumpkin patch selecting their Halloween and Thanksgiving pumpkins.
Science is just beginning to catch up with what every Alzheimer’s caregiver has already known instinctively and by experience, that music enhances memory. Old children’s songs can rekindle long-term memory of childhood, but present information can also be successfully implanted with music. There are a few brand new songs our residents learned and managed to remember, and as I mentioned earlier they were also able to learn one-another’s names through these individualized songs. Science will tell in time how music stimulates memory. My instincts tell me that the pleasant feelings that are evoked by the appropriate music are primarily responsible for this, just as were the duck pond and the pumpkin patch. Nature wrapped every action that is essential to life into pleasant feelings to achieve its goals: it feels good to take a breath of fresh air, to eat a nice meal, to bring forth children and watch them grow. A smile and a pleasant feeling always goes a long way. Especially in managing the Alzheimer’s afflicted patient.
As reasoning, judgment, verbal expression become relics of the past, the memory of an Alzheimer’s sufferer has to be evoked and maintained — even increased — through the world of pleasant feelings.
On a glittering, crisp winter day, one may lead the Alzheimer’s afflicted to the window, help their palms touch the cold window-pane, giving time to experience the sight, the feeling of cold and then say: “cold” and “winter”. One may do this daily and one day the resident will surprise you. After you said “cold”, he or she will continue: “winter...”
Another pleasant experience is to sit quietly on a covered patio and listen to the patter of rain, or even touch the raindrops. This may bring back memories of water, along with its name. There are millions of experiences associated with pleasant feelings that may enhance not only the quality of life, but may bring back memories which are closer to the recent past.
Frequently residents remember an especially well liked caregiver who returns from a two week vacation. Perhaps the memory of a nice, nightly backrub, or the memory of a walk, or any of the other experiences bring back their names.
Clara, the lady who was a longer through a lifetime received a beautiful, large, red apple from a nursing assistant. The lady had no teeth to eat the apple with but she held it all day in her arthritic little hand, looking at its perfect shape, inhaling the fresh aroma. She held onto this apple for dear life and would not give it up for anything. From that day on, she called the assistant by name and she permitted her to share her private hours sitting next to her in her room. The ice broke, and from then on she let a variety of pleasant experiences into her lonely world.
Ann visibly started to fail. she became smaller and lighter every day, even though her appetite was excellent; she could not utilize food anymore. Christmas season arrived. One afternoon we were expecting the Salvation army’s visit. So we dressed her in a pink gown, propped her up with her lacy little pillows in the wheelchair, and covered her thin little legs with a pink blanket. She was pretty with her huge violet eyes which she opened only seldom these days, her brown hair, and still pink cheeks. She had not talked for years. Many doubted that she was aware at all of her surroundings. We who knew her also knew that she was still there: a thinking, feeling human being, who could never become a “vegetable”. But even we were not prepared for what followed. As the Salvation Army arrived with bugles and bells and bringing a festive air with them, Ann opened her eyes and clear as a bell, she started to sing “Jingle-bell...” She smiled, her little arms fluttered with delight. A few days later she succumbed to the disease. My little “Butterfly” — as I liked to call her — quietly and with ease fluttered away, through the window and probably settled down on a pretty pink cloud, from where she could hear the perfect music of the Universe, loud and clear.
DECISIONS
With the advent of Alzheimer’s disease, the caregiving families, or caregiving single persons are constantly faced with utterly difficult decisions, for which no person is adequately, or even remotely prepared.
The first difficult decision is whether to tell, or not to tell the afflicted person of the diagnosis. Since the cruelty of this terminal disease inevitably robs the patient of his cognitive faculties, it appears kinder, on the surface, to take care of the daily problems, but keep the diagnosis undiscussed, until the afflicted reaches the advanced state of the disease, when no more questions are asked.
Dan’s family decided not to discuss the diagnosis with him. They attempted to minimize the embarrassment of forgetfulness, or improper behavior, and they tried to cope with the disease as it presented itself, as long as they were able to do so. Yet, when the disease progressed and institutional setting was the only solution, his wife, going through her husband’s belonging, found little notes, written to himself, noting each step of the disease, with soul-searching remarks and questions of guilt, whether his life-style, his habits could have caused the disease and the disintegration of his job, and his family relationship. Had the family had the benefit of later knowledge, Dan’s feelings of guilt could have been alleviated; he would have known that Alzheimer’s disease would have come, regardless of his smoking, or not smoking, jogging or not jogging. and not only would he have had the comfort of a clear conscience, but he still would have been able to participate in some of the very difficult and crucial decisions concerning his care in the latter stages of Alzheimer’s disease.
I earlier touched upon the selection process of finding an appropriate nursing home. the most difficult decision prior to this in many a spouse’s life is the process of finding strength toward independent action, since a life-long dependency on the afflicted person’s opinion and wisdom must now be unlearned. the caregiver realizes this, yet may feel like a traitor when establishing financial independence. Many have found it impossible to take away the right of the afflicted spouse to sign a check, only to find — as was the case in Dan’s life — that he signed checks giving hundreds of dollars away to the neighbor’s milkman and to solicitors of various causes, without remembering that he had done so. He could have signed away their life-savings and their home with the same ease.
If it is hard to deny financial independence for loved ones, it is even harder to compromise physical independence by restricting their comings and goings, and eventually having to take away the use of the car. Physicians frequently like to give this responsibility to the family. If the early onset Alzheimer’s sufferer still can read and his eyesight is good, his driver license will be renewed unless his family member takes appropriate steps to stop it. Having a drivers license signals adulthood and independence in a youngster’s life. It is utterly difficult for any spouse to take this independence away. Eventually, for the Alzheimer’s disease sufferer’s safety’s sake, it will have to be done. Later the even harsher decision to limit physical independence even more will have to follow, by entering them to a nursing home. These steps are hardest on the family, because by the time these steps become necessary the patient has reached a stage of memory loss in which he seldom realizes the gravity and full extent of these changes.
But still more difficult decisions lie in the future; frequently unavoidable decisions over life and death in the latter stages of the disease. To institute artificial feeding or not? Should we withdraw only the food, or water also? Is it ethical to let a person, any person, die of starvation? Should we let a heartattack end the patient’s life, or should we institute resuscitation? Should a family decide on the use of life-extending technology, in favor of time-honored medical practices and the continuation of pain and suffering at all costs, or be in favor of a quiet, painless death out of the hospital? Where does love end and neglect begin? There are no uniformly accepted guidelines yet, except perhaps for the patient’s wishes. But the patient is unable to express them at this advanced stage of the disease. The family dies a thousand deaths, trying to cope and come to terms with these questions. The spouse mourns every day the loss of a family member in prolonged grieving process from which there is no escape. Then one day the patient quietly slips away. The family member dries the tears of release; the burden of decision making is lifted.
Just then a healthcare worker approaches and asks the unavoidable question: “Would you permit an autopsy? It is important to know for your future, for your children’s future, if your family member died of Alzheimer’s disease.” The family member knows all this, yet it is usually at this point that the anger of unresolved grieving sets in, openly and with full force.
“Don’t you ever give me any peace?”, Dan’s wife cried out. “Didn’t he suffer enough, now you even want to take his body apart? No, no, no! I don’t want to know anything. all I want is peace for both of us! I don’t want to have Alzheimer’s disease hanging over the head of the grandchildren if the diagnosis is confirmed!”. The children arrived, and after some crying, some quiet time, the decision was made for an autopsy. The last decision before the family, going through the suffering of Alzheimer’s disease, finally will have the freedom to walk toward a new life.
EPILOGUE
I attempted to avoid the technicalities of the nursing profession in dealing with problems of restraint-free Alzheimer’s care, in order to bring us to the full realization of our mutual human needs.
As soon as we caregivers allow ourselves the luxury of taking time to listen to one another, and then place the needs of our fellow human beings and life before our own selfish interests — from the businessman to the last humble worker of healthcare — and help one another in the realization of our highest human goals, all will be well.
I would like to thank everyone who touched and shaped my life, and helped to bring about this awareness — and this book.
DIET AND NUTRITION
My own childhood memories include a story — maybe one of Aesop’s fables — about a fox and a stork. As the story went, the fox invited the stork one spring for dinner. He prepared a delicious meal of all the things he liked and anxiously awaited the stork’s arrival so he could hear about all the distant lands the stork has seen on his long journey back to his home. After the stork arrived they sat down to the table. The fox served himself and offered his guest to do the same. Although the table was laden with food, it was served on a flat plate and in such a way, that all the poor stork could do was to look, but could not manage to eat one crumb. His long beak knocked against the bottom of the flat plate, the pieces of meat were too big for him, with big bones left in them, the sweets and berries were not to his liking. Finally he clapped angrily at the fox and departed, vowing never to return.
Standards of diet and nutrition have firmly been established for almost all kinds of illnesses and situations, except Alzheimer’s disease.
Marguerite was a constant walker, with a pretty good appetite. She ate all her meals and took her snacks, which were served at the change of shifts to maintain a calm atmosphere as the day shift left and the afternoon shift arrived. Even so, she gradually started to loose weight. Examinations revealed a healthy lady, who worked off her calories as soon as she had taken them in. High calorie meals and four high calorie snacks were requested for her and with this management the loosing trend slowly was turned around. As she started to regain her lost pounds, she became more relaxed and the four snacks were tapered down to two, which maintained her weight at a desired level.
Fred had — to all appearances — no appetite at all. He frequently would look at his food, then get up without eating. One day, when we were reminiscing about the smells of old time kitchens and opened up some jars of spices to sniff the lovely fragrance of herbs and spices, we realized that Fred almost buried his nose into the jar and still could not smell anything. This sense being impaired, looking at a flat looking plate — let’s say — of white turkey meat and mashed potatoes must be a highly unappetizing experience. We started to “spruce up” Fred’s plates with fresh vegetables that brought color to each. He also adored ketchup on nearly everything he ate. With this color-change his appetite returned dramatically. From then on, eye appeal was a must on our unit.
There was one day each week that the caregivers dreaded. It was called “chicken day”. Lovely fried chicken was served every Wednesday, complete with bones, a cut that included the fragmented little pieces of chicken ribs. Not even the most accomplished self-feeders could handle them. It was a race against time to prepare and debone twenty plates of chicken before the meal got cold.
Meals with hard to digest food items, like hot-dogs and hamburgers and beans can easily upset an elderly person’s stomach. Mary may not have eaten these food items for years at home. Now she gobbled them down since they were in front of her. She did not know anymore what the food item was and she was served this meal weekly until one day we were able to make the connection between hot-dog and beans and her rare episodes of agitation.
Georgette could eat and enjoy anything she could pick up with her fingers. This held true for most residents. But how do you pick up mashed potatoes?
Ground meat for Ann always arrived cotton cry, with no gravy, or any other binder. Her plate predestined her to inhale all the food in front of her, even with the most careful feeding.
Rules and regulations insist on a certain combination of cereals. As toasts almost inevitably arrive cold and soggy in an institution, I requested cold cereal instead, so the residents could eat it with fingers in its natural form, or with milk. According to regulations this couldn’t be done. Dunking the toast was suggested.
I myself would rather die of starvation than eat a dunked anything, and many of our residents felt the same way. So the toasts were left on the trays and residents were not only cheated out of a certain grain — although these toasts were usually of bleached flour, which may act as powerful irritant to even a healthy brain — but of much needed calories too.
I touched upon the need for finger-foods, or “meals on the run” type warm foods for constant walkers.
In other words: food items should look colorful and appetizing. They should be served in a safe consistency. Foods should have a high caloric value, and be free of bleaches and appropriate for the delicate digestion of an elderly person. To achieve all this, an interested and dedicated dietary department could be a great blessing to an Alzheimer’s unit.
MEALTIME
Every meal should be a nourishing and nurturing experience for everyone. But how can you nourish and nurture a group of people whose attention-span is seldom more than twenty minutes at a time when the serving of trays for these many residents takes at least that much time?
Mealtime began at our unit about one hour before the trays actually arrived. First we helped all the residents to the washrooms, so they could arrive calmly and clean, when it was time to eat. After having finished this task, an employee remained with them to have a light conversation with the residents, mostly about food, or to share the experience of enjoying the scent of herbs that corresponded with the daily menu. This time also included singing.
Some of our residents who enjoyed domestic-type activities entered the dining-room with an employee and helped to set the tables. The tablecloth could be crooked and four forks could end up at one table-setting, but no correction was made in the presence of the resident. No poorly set table should ever be the ticket to humiliate someone. After the tables were set, the residents joined the group in the living-room. The remaining caregiver would now straighten out the tablecloths and place silverware according to the residents’ needs at each setting. There were some who could not use knife and fork anymore, so only a spoon would remain next to the napkin for this resident. As the foodcart arrived, one food item — the main fare for that meal — would be placed at each setting and prepared appropriately. The resident who could handle a spoon only, would find the meat and vegetables cut in bite-size pieces. When this preparation was under way juice was served in the living area so that only one glass remained on the table for milk, next to the coffee cup, in which decaffeinated coffee was already prepared according to individual tastes. The main goal for these pre-meal preparations was to cut down on activities and the clutter of items on the table, which would be distractions to the Alzheimer’s patient. This way the twenty minutes of attention span could be fully utilized to achieve both nourishing and nurturing activities.
Seating is also of prime importance to maintain a calm atmosphere. We found that at no individual table should more than two residents be seated. If the two residents were seated facing one another, enough “elbow room” was left for them, so they could comfortably handle their own meal without getting confused about table mates’ utensils and food. This would be unavoidable if four residents had been seated at a table. Doc and Dan sat at one table, facing one another. Both had impeccable table manners and enjoyed a quiet meal. Ann, Betty, the little lady who liked to play with her dolls, Fred and Ottilia were seated at the large, family style table, for they needed some help with feeding. Mary and georgette shared another table, for they were inseparable and enjoyed one-another’s company. We caregivers were seated around the family table with a cup of coffee, not only to help, but also to observe any changing habits in behavior, abilities or appetite. One day I saw that Georgette held her fork thoughtfully in her hand, rubbed it, turned it from side to side, finally, with a smile of new discovery, she started to scratch her head with it. We thus observed the moment when Georgette’s memory lapsed and she forgot what a fork was along with its purpose. Unobtrusively we removed the fork and the knife and left the spoon. She ignored the spoon and started using her fingers. The same day a note was sent to the dietary department to accommodate her new “fingering” eating habit with appropriate changes: to send a baked potato instead of the mashed, the egg hard-boiled, instead of soft and so on. This way, she was able to continue to enjoy her meals, on her level, on her terms. As her mental functions declined even further she could not understand her need for dentures. They became a completely foreign object to her and she refused to wear them, so her diet had to be changed again.
When Fred started to have speech problems, which signaled possible swallowing difficulties, his diet was adjusted accordingly.
Betty liked to line up her little washable dolls on the table and finger-fed them along with herself, wiping her fingers occasionally into her hair and clothing. After the meal we took the dolls and Betty for a bath and shampoo. The dining room was quiet, where everyone did his or her own thing and enjoyed the meal.
The new dietitian frequently and very unobtrusively visited our unit and learned to know each resident by name and habit. She offered suggestions for possible substitutes, which were very helpful. Properly decorated and served meals became the rule of the day. This was not only a blessing to residents and caregivers alike, but was also safe and appetizing from an Alzheimer’s point of view.
Sometimes Doc’s wife came to share a meal with him. Through years of visiting, she was familiar with all the residents in this unit and considered them part of her extended family. Frequently, when Betty was in a bad mood and dunked her dolls into the soup instead of eating it, May would sit next to her and guide her actions into a more useful channel again. Henrietta would invite May to her “house” to share her dessert and coffee, and Maria would show her the torn front cover of a ladies’ magazine displaying the picture of a luscious looking lasagna, undoubtedly as a gesture of friendship. Maria carried this picture with her all day, for months, until it finally disintegrated. Not only was lasagna her favorite dish, but it probably reminded her of the good aroma and feelings when she masterfully prepared this dish for her large family.
After the meal everyone was helped to the bathroom and an afternoon nap, either in bed or on one of the reclining chairs. It was on these occasions and during some sleepless nights that I wished every resident owned a recliner.
The more domestically inclined residents helped to collect the soiled table cloths and wipe the tabletops with a moist sponge. Henrietta always looked for a sink to wash some dishes, but we did not have one. Eventually we substituted a new washbasin, where she rinsed styrofoam cups and was satisfied.
VISITS
We soon learned that it is very helpful to residents — and caregivers — to have some advance notice of visitors, whether they are physicians making rounds, family members, repairmen or any other passers by in this unit.
Ida kept lines of communication open either by asking for the time, or by sitting for a few minutes next to the nurse as she was working on charts. With a little reassurance and smile, Ida attempted to cooperate in any way she could. One day I heard her scream at the top of her lungs in her room. I rushed in, only to find her in the company of an assistant, who was unfamiliar with the workings of this special unit, holding her at arm’s length by her hand, trying to pull her in the direction of the door. “Come on, hurry, we have to go to the examination room to see the foot doctor!” By then Ida had her feet firmly planted on the floor and would not move an inch. She was so frightened and agitated, that we had to give up the idea of foot doctor for that day. Had we known of the doctors planned visit and the time of his arrival, we could have used one of Ida’s walks to the desk when embracing her around her shoulders we could have guided her a few steps further into the examination room with ease.
One quiet winter afternoon, as we all gathered in the living room for some reminiscing and singing, since we had open visiting hours, Irene’s family arrived. They looked for Irene first, then not finding her in her room, proceeded to the living room. As they reached the door, they called out a very loud and cheery “Hello everybody, how are you...” The suddenness and amplitude of the voices was totally unexpected and in complete opposition to the prevailing, quiet atmosphere of the room. The results were dramatic. The residents jumped up, their afflicted nervous systems visibly irritated to the utmost. Wanting to resolve this unexpected stress, they started to run around in all directions of the compass. The visit was ruined not only for Irene and her family, but for all twenty people residing in this unit.
From then on we suggested to everyone to move with the “flow” of the unit. If there was an activity, participate in it for a while, or just sit down quietly, until the resident to be visited was ready to accept the visitor. Visiting in this manner expresses interest and provides dignity, which every human being needs.
Alzheimer’s residents — like every one else .— have shifting moods, days that are better than the others; this also has to be taken into account by the visitors. Good communication between staff and family are essential, especially in the beginning. The family visitor will learn — if time is taken to do so — upon arrival, if the family member had a good night’s sleep, if he or she ate well — all the little but essential details in a person’s life — and then proceed with the visiting. As family members and staff become more acquainted with one another, even a glimpse of the corner of the eye and a smile becomes enough to communicate to the visitor: “All is OK... have a nice visit...”
One also needs to know — when it comes to occasional visitors, whether friends or family members — if the resident prefers to see them while they are healthy and on their own. Many times people who never were a favorite part of the resident’s life visit and cause undue stress. It is helpful to get a list of such acquaintances to help protect the resident from unwanted visitors. Most of these visitors are satisfied to “make an appearance”, either to show some interest to the family of the resident, or to satisfy their own idle curiosity. In each case, a glimpse from a same distance usually meets with their satisfaction; a cup of coffee and some words from the nurse fills their self-allotted time of twenty minutes visiting and they leave soon after without upsetting anyone.
It is more difficult to handle family members who feel guilty, for not helping the family caregiver more effectively. Such visits usually come at holiday times most significant to them. Their arrival is loud, to show everyone they are there. The moment they set foot into the unit they begin to criticize everything, from food to the layout of rooms, how the hairdo of the resident has changed and that nurses did absolutely nothing to make “their mother better...’ One attempts to offer explanations into the nature of the disease and offer the help of support groups, usually to no avail. After these visitors bring profound turmoil to the unit and frighten the resident, they become confused themselves, because they sense that their family member has entered a world they don’t understand and are unable to follow. They leave, not to be seen or heard from for another year.
In such instances I like to insist on a pre-arranged time for their visit, at which time the prime family caregiver can be also present. This — above else — helps to maintain the calm atmosphere that is essential to all Alzheimer’s residents — and also helps to initiate the family interaction that came to a halt as a result of the family member’s illness. Many times hurt feelings coupled with sheer exhaustion on part of the caregiver prevented communication. Such visiting times, as described above can become the base of a healing process within the family. Guilt and hurt feelings are baggage that no person should carry through life...
There are times when family or friends have some special plans for an outing with the resident. Such plans can and should be discussed with the resident’s caregivers in the facility, but no mention should be made to the resident, since time has lost all meaning, and only the now is perceived. The resident will want to translate these plans into immediate action and if this is not followed through, irritation, agitation is the result. Even when the happy day arrives, the resident may feel “out of sorts” due top a variety of reasons, which may or may not have a connection with Alzheimer’s disease, but these feelings of discomfort are always — by necessity — filtered through the Alzheimer’s disease, resulting again in non-cooperation and agitation. If the resident is thoroughly examined for possible physical causes and none is found, one has to understand that the resident does not feel up to going out that day. The Alzheimer’s afflicted person is still an individual with likes, needs and wants. He or she is also very frequently an old person who has difficulty dealing with change, and this is amplified by Alzheimer’s disease. In any case, he or she as a person still has a right to choose; if the choice is really important to the resident, he or she will let everyone know about it in his or her usual mode of expression. It is always wise to listen very carefully to these expressed desires, because by not heeding them, the family may go through a very hard time at these outings, and no one would benefit by it.
Theresa was in her eighties. She had ten children and each had several children and grandchildren. The family would have filled a small town. Family holidays were very important and I am sure, Theresa, the mother was the one who had instilled the feelings in her children that gave rise to this closely knit family. None of the family members would ever have dreamt of leaving mother out of a Thanksgiving or Christmas dinner. All through the day, children, grandchildren, great-grandchildren kept visiting her, seven days a week, from morning until bedtime. Theresa was proud and happy when she looked upon her visitors, whom she frequently did not recognize anymore as family members, just as someone “so nice”, or “pretty”. There were two sons she always knew as her sons. One Thanksgiving morning, the oldest, Martin, arrived to take mother home for dinner. He was quite busy with the preparations of the day and also had to drive quite a distance to pick up Theresa. As he arrived and started to help her into her coat, Theresa vehemently resisted his efforts.
“No!.... No!.....”, she said in a voice we both knew and which signaled that her mind was made up and she would not easily change it. We took her to the bathroom, checked her shoes for comfort, went through the usual “checklist”, to no avail. I suggested to give up on the idea, because she probably would spoil everyone’s holiday. Martin checked with the rest of the family and came forward with the decision to take mother home anyway. She would relax, once she was at home, they hoped. The ride took almost an hour one way. Three hours later he was back., with a little apologetic smile, as if to say: “You were right...”. I mentioned that within the next few days the family could bring some of the turkey and special sweets to the home. We would set a large, separate table in the living room, the family could have their separate Thanksgiving dinner. Martin was grateful for the idea and followed through. The family had a nice Thanksgiving, which included mother too. They sang, made pictures, and played with the great-grandchildren. Not only the family, but Theresa enjoyed the day, too. As she began to tire and get agitated, the family left, and she had a good nap and a feeling of a happy day. This experiment proved so successful that all subsequent holidays were handled similarly from then on.
As our unit’s residents stay — in most cases — was very long-term, all family members became friends and members of a larger Alzheimer’s family within the facility. Their interaction included celebrating holidays, substituting for one-another, and visiting with every resident, as if they were their own family members. Seasonal in-house parties are well appreciated affairs, like a Fourth of July picnic in the yard, with box lunches and singing, ball playing, or Christmas-time sing-alongs. Such experiences leave a glow of happiness and belonging to one another that cannot be severed, not even by the disease.
Visits with a resident in the terminal stages of any disease is difficult, but with an Alzheimer’s afflicted person even more so. Family members not only feel utterly helpless, but many a times they wonder if it really is of any benefit to their loved one if they spend time with them.
As experience shows over and over again, all Alzheimer’s afflicted are aware of their environment and don’t like the feeling of abandonment. Although they may not be able to open their eyes, or move their limbs, they still perceive a hug, the holding of hands and a whisper of “I love you...”. Time is precious and too much demand is made on everyone’s time in our daily lives. but a short visit of even a few minutes — I am sure — means a lot to the resident. And it will be even more meaningful to the visiting family members, after their beloved has passed away, to know they were there and did everything they could.
We like to shun thoughts of death and it is difficult to come to terms with mortality. In time, the medical profession may learn to face and handle this problem, too. Kuebler Ross has already laid a good groundwork for this process, which I hope will continue. One experience will forever stay with me, which — after some hesitation — I would like to share, even though it may provoke some controversy.
When Mary’s disease progressed to its terminal stage and she slipped into a coma, her children arrived for a decision-making visit. They gathered around her bed, embraced her, fluffed the pillow under her head, made all the loving gestures helplessness brings about at the bed of the gravely ill. There was some crying and praying. Mary — to all appearances — did not react, neither to voice nor to touch. All of a sudden, by some impulse, one of the sons took her hand and said:
“Mom, we are all here and we love you. We also love one another and will always love and help one another, even when you are in heaven. We promise. You were a good mother to us. The best. We will be all right. You don’t have to stay. It is OK for you to go.” Mary looked up for a moment and smiled. Took one breath — and left...
Later I asked the son, what prompted him to say all these words? “I had a feeling that she was very tired and would like to go, but did not want to cause sorrow to us”, he replied. Mary had a beautiful life and a happy death, inspite of Alzheimer’s disease. I can almost hear as she said “Yea!” within her soul, as she heard her son’s words of release. “Yea!” He gave her the freedom of a last decision and she happily took it.
A well informed volunteer may be one of the greatest blessing at an Alzheimer’s unit. there are always more tasks to be accomplished than hands to do them. To take the wanderers for a walk, or sort buttons, or play dolls. Also to help holding hands with the ill is of great help. In order for the volunteers to feel comfortable, they need to know a lot about the disease itself, and about each individual they are entrusted with. We found that the most successful volunteers were the ones who were assigned a specific task with specific residents. When expectations are clearly outlined and the route leading towards the goal is explained, success and a feeling of satisfaction will follow in both the volunteer and the resident. Volunteers soon will become part of the Alzheimer’s family: this sense of belonging and feeling of comfort is the highest goal of any Alzheimer’s unit.
DISCHARGE
There is a good chance that an Alzheimer’s resident will never be discharged from a nursing home. The process of this disease is a slow but steady deterioration, for which — at the present — there is no cure. Should discharge from a facility occur, it probably will be another facility, usually due to financial consideration, or the caregiving family’s move to another part of the country; or it may be necessary to admit the resident to a hospital, due either to complications of Alzheimer’s disease, or to an unrelated problem.
Should the former occur, a very thorough transfer record will not only help the admitting facility and the family, but most of all the resident. No matter how considerately the process of discharge is conducted, the resident will be greatly affected by the change. It almost seems inevitable that after a transfer, the Alzheimer’s resident will begin to function at a lower level than up to that date, and there is a good chance that he or she will never regain the lost functions. It is for this reason that any change, even a room change in the same facility on the same corridor, or even the change of a roommate should be avoided, if at all possible.
Fred was admitted to a hospital with pneumonia. He ran a fairly high temperature with some wheezing, which started on a Sunday afternoon. Dr. Mac was out of town and the physician standing in for him admitted Fred immediately. Alzheimer’s disease was a rather obscure illness in those days, so it was no wonder that fifteen minutes after admission the hospital admitting nurse called in a rather anxious tone of voice, asking us if we knew that Fred was violent. “We know there is a potential for high agitation, but he is a very gentle man as far as we know”, I said. “Tell me, what happened?”, I asked fearing to get the very answer I got a second later:
“Fred tore out five IVs in the past ten minutes, and punched the respiratory technician in the nose. We had to tie his hands and one foot and his body to the bed, and he still manages to get out of these restraints.”
Poor Fred, I thought to myself, how could you manage all that insult and pain, without understanding that people want to help you!
“Would it help you if I come down after work and together we may sort things out? In the meanwhile he could take fluids by mouth; Fred loves to drink anything, at any time. A change of orders from IV medications to another route may be very helpful. I also will ask the family to come with me to visit Fred.” The nurse thanked me for the help and two hours later the family and I were at his bedside. Fred was beside himself, shaking the siderails, chewing on restraint strings, winding the call-light’s cord around his neck. His hand was red and swollen from the restraint; his respiration had improved a little. It seemed that from all the straining his lungs were ventilated at an accelerated pace and he was able to get rid of a lot of mucus with each cough. Almost at the same time as the family, the physician also arrived, as nurses alerted him of the unsuccessful attempts to start an IV and the impossibility of maintaining it, even if a start had been successful. The family looked at the situation in horror.
“We are going to take him home at our own risk”, they said. “Please prescribe something that may be given to him in the home”, they insisted.
“What can you achieve at the nursing home?” — the physician asked.
“Almost anything, as long he has the freedom to walk about when he feels like it and does not have to hand on tubes and wires, like a puppet. He is at home there...”
At the family’s insistence he gave permission to return Fred to the nursing home, with medications that were second-choice in the medication protocol, but which could be administered to him easily.
“Call me if his condition worsens, the physician said. “I’ll come out any time, even during the night, if you need help.” Silently I said praises to God for physicians who understand and care...
Ida was not so lucky. When she sustained her hip fracture she needed an operation, which meant a fairly long stay in the hospital. She too was a walker, and had serious difficulty with speech and understanding. She functioned well in her familiar surroundings, but any change of personnel frightened her. Any change of routine affected her behavior in every way: she became uncooperative, lost her appetite and refused to participate in activities of daily living. Shortly after her admission to the hospital the phone rang. This time we were ready and offered hands-on assistance. The family member was already on his way to the hospital to help calm her. I just arrived when she was transferred from the emergency room to her room. The nurse was in the process of “orienting” her to the room: this is the call light, and this is the button for the television... My friend looked with wide open eyes at the nurse. As the nurse left the room I followed to help with a few hints:
“You know, she has Alzheimer’s disease and she did not understand a word you said...”
“She looked OK to me, although I hear she did not do too well in the emergency room”, she replied.
The family was consulting with the physician, when we heard again her ‘fight and flight” scream: someone had attempted to draw some blood for tests. She wanted to run, but could not and was now in severe pain. I reminded the nurses that this lady is unable to ask for any pain medication: it has to be anticipated. The family confirmed my statements, and remained at the bedside until she was readied for surgery. After surgery the family and our staff kept watch and provided support to help her overcome this trauma. While she resisted all activities of daily living and physical therapy when was alone with the hospital staff, she did rather well when a familiar face and smile encouraged her. She came back to the nursing facility a little more dependent with feeding and bathing, but she was able to reestablish independent ambulation, which was crucial for her.
Marguerite, too, was an independently functioning, easy-going Alzheimer’s afflicted person. She needed to be helped in her activities with supervision only, for once she started doing something, she was unable to stop independently. She was unable to express herself verbally, but endlessly repeated the last sentence she heard, until another sentence came across to her. This constant talking usually irritated everyone present in the room, and the sentence she heard most often from her fellow residents was: “Be quiet!”. So she walked about, saying in a constant monotone: “Be quiet, be quiet...!” This sentence was constant and continuous, like the murmur of a waterfall. for a while this became our “white noise” in the unit and in time people did not even notice.
She needed an elective surgery for which she was admitted directly to the hospital. The orientation process about the lights, buttons, specimen cups to be filled was thorough and very hospital-like. When orientation was finished, the nurse brought in a supper tray and left the room, only to return in a few minutes, when she realized that Marguerite had picked up the tray and thrown it across the room, with its contents spilling out to the corridor. Then Marguerite started to run, following some people into the elevator in an attempt to get out of the hospital.
“She looked so with it”, the nurse complained, “And so attentive. She even repeated my instructions, so she wouldn’t forget them.”
“Well, you see”, I commented, as I brought Marguerite back from the hospital lobby, where I had run into her as I came for a visit. “She needs a minute or more to process a word and then some more time, to put it into action. she repeated some of your words, because that is the only way she could talk, and she will continue your last word for hours. She is unable to make sense of a lot of items, placed in front of her, so she got rid of them the best way she could, and ran...”
“Well, we can’t have this behavior here”, the nurse said. She proceeded to get orders for physical and chemical restraints. After surgery — which was very successful — in order to keep her from running, the hospital placed her into a “geri-chair”, a glorified wheelchair with a tray in front, looking like a baby’s high chair. A few days in this contraption will do wonders in demolishing anyone’s self-esteem. Her hands were secured to the sides of the chair, so IV lines would stay undisturbed and a urinary catheter was dangling to the floor. She was sedated in order to keep the above arrangements intact. Convenient for the chronically understaffed hospital personnel, but devastating to an Alzheimer’s sufferer. Because of a heavy snowstorm, I came to visit some three days after the surgery. It was mid morning. Marguerite sat in the corridor so nurses could keep an eye on her. Her eyes were droopy from sedatives, but she recognized me with a smile. I asked for permission to take her into an unoccupied, bright and spacious lounge and to untie her. As I did so, I realized that her joints were stiff from immobilization and it took minutes before she began to move her arms and bend her elbows on her own. I tried to stand her up, but her knew remained bent and she made no effort, to move them; her Alzheimer’s afflicted brain forgot, in a few days, how to give and receive signals that would activate walking. It took several weeks of training, after hospitalization, before her ambulation was reestablished. Had she been permitted to remain ambulatory, and to use the bathroom facilities at will, neither the urinary catheter, nor the sedation, nor the immobilization would have come into play.
Placement in the observation room, a low bed and more consideration in the prescription of medications, liberal visiting hours for the family could have spared a lot of anguish caused by unnecessary restraints.
Until physicians and hospitals get the “hang of” how to approach an Alzheimer’s afflicted resident, it is a very good idea to personally follow up on all hospitalized Alzheimer’s patients. Hospitals are almost always glad to get some helpful hints — and a helping hand with the very difficult task of caring for the Alzheimer’s patients. This in turn will slightly halt the deterioration process brought on by change. Limiting hospital stays to the absolutely minimum days necessary is a definite bonus.
BEHAVIOR MANAGEMENT
The title of this chapter appears suspiciously manipulative. It would look so much nicer, if we could say “Helping people to achieve contentment”, or if we even could daringly use the word “happiness”.
Every human being differs in genetic makeup and because of environmental and social factors, and personal experiences. these factors are present in all Alzheimer’s disease sufferers, too, but many times they are hidden under layers of conflicting and inappropriate responses, brought about by the disease process. Many times layers of social niceties are swept away by Alzheimer’s disease, and the basic personality, untamed by customs and education becomes exposed, often to the dismay and embarrassment of the family.
Georgette always was a very matter-of-fact lady, who never minced her words; she also enjoyed a good sense of humor, a table-slapping kind of laughter. She also liked the same matter-of-fact approach from her environment. When someone tippy-toed into her room, she gave a very belittling kind of a look, as if to say: “What’s wrong with your foot? Can’t you step out decently?...” She would never cooperate with the timid caregiver. If you wanted to achieve your goal, you had to bring in humor and laughter. Then she would do most everything.
Frank, Doc, and many others suffered from what has become known as “Sundowner’s syndrome”. They had an urge to walk during the day, but even on quieter days, they just had to walk, to undress, to become “hyperactive” around sunset. It was at this time that appropriate activities were needed. They required plenty of elbow room, walks around the block, playing ballgames indoors; anything that could relieve their anxiety of the hour. I also found that drawing of the shades and turning on a soft light helped. The same type of hypersensitivity could be observed on overcast days in some residents, with increased agitation and limited tolerance to bright colors, if increased ultraviolet rays were irritating to people whose lesions may have affected the color sensing areas of the brain. This theory has never been proven, but drawing of the shades on overcast days did help sometimes, and it is worth trying when all other methods fail.
There are people, who have been “loners” all their lives, who shunned social life in any shape or form. These people usually have experienced sever difficulties in their lives: went through depression, wars, or personal tragedies that remained unresolved. They usually learned to cope and survive on their own, and for this they needed solitude all their lives. All of a sudden, they are thrust into communal living, where one person or another insists that they start playing volleyball, or bingo in their eighties. this “diversional therapy” goes against their grain, yet they are unable to express this, lacking verbal ability and the power of reasoning. One way out of this difficult situation — and many times the only resource they have — is to physically fight for their rights. This behavior has been named — very appropriately — “catastrophic reaction”. It always surfaces when they feel cornered and are denied any freedom of choice.
Bob went through the second World War. He never resolved the deep human conflicts that accompany such an experience. He also had to live in a communal setting for many years while he was in the army, so privacy was and remained to him very precious. One day a new employee entered his room during his after-lunch siesta and urged him to come and play ball with the others. Bob first mumbled a quiet “no”, which grew louder and louder, into a full blown, very loud cry of “nooooo”, with the intensity of a wounded animal’s helpless cry, pushing the assistant out the door, with all the strength he could summon. This was a memorable occasion, and a fine time to explain to my assistant never to force an issue with an Alzheimer’s resident, else it ends in a similar reaction. One can return a few minutes after a “no” and by then the resident may have forgotten that he or she said no, and follow a suggestion.
The same situation arose when Dorothy, a constant walker, took her lunch sandwich and started — as usual — to munch and walk at the same time. Just then a well meaning but uninitiated nurse commenced to correct the situation, taking away her favorite corned beef sandwich in the middle of a juicy bite. This was more than Dorothy could bear. She grabbed the nurse’s hand holding the sandwich pushed her against the wall and retrieved her lunch. The nurse cried out loud for help which soon arrived from the general floor. Poor Dorothy was held down by four people and placed into restraints. She did not touch food for the rest of the day and did not sleep all night until the wee hours of the morning. We let her rest late, and — thanks to the Alzheimer’s forgetfulness — all was OK.
This, and many similar experiences, show the absolute necessity of a steady staff who know the residents better than they know themselves. A look, a tiny motion of the hand may reveal more to a person who knows her charges, than a library full of unapplied knowledge. It may spare residents catastrophic reactions. I found that the greater percentage of such occurrences were the result of inappropriate handling and intervention. Knowing how to “handle” Alzheimer’s residents may also spare the caregiver from possible injury.
Henrietta, too had been in the army, as a nurse, with combat-nursing experience. All the community centered years brought about in her an exaggerated sense of personal property. Anything that was in her semi-private room was hers, even her roommate’s belongings. We attempted to help her sort matters out, but with absolutely no success. The situation was resolved by moving both ladies clothes into a storage closet on the floor, leaving only a couple of items in each personal closet, all of which nevertheless inevitably wound up in Henrietta’s closet. The families were told the rationale behind our actions, and we gained their support. Many times Henrietta moved the entire wardrobe under her mattress. Fortunately the new arrangement cut down considerably on the family’s ironing chores.
Henrietta also liked to save and collect food items under the lining of her wastebasket, or under her mattress. Tact and non-confrontation helped to solve this problem behavior.
Prejudice nurtured through eighty years cannot be eradicated, especially not in a person suffering from Alzheimer’s disease. Clara was a feisty little lady who intensely disliked anyone from another race or any “foreigner” with an accent. After admission to our unit, her family changed physicians and the new doctor not only was from another race, but had a foreign accent too. As soon he opened his mouth the first second of the first visit, catastrophic reaction was in full bloom. “Get out of here”, she screamed at the top of her lungs. “Get out of here you dirty foreigner, you wet back, you...”, and assorted names followed, while she diligently attempted to kick her doctor from a sitting position. The physician stood there stunned for a few moments. As her tirade came to a momentary halt, he attempted to use humor, hinting to her behavior: “You like good all American boys, like Al Capone...!”
“That’s right”, Clara chimed in. “I sure liked him! He was my next door neighbor and you could not ask for a better one!” We just had to follow up on this bit of information and it turned out to be true. Clara really used to have Al Capone for a neighbor... Her physician had made diligent efforts through years of care, trying to befriend this old lady, with no success, although I suspected Clara really enjoyed these monthly encounters. But we never again assigned anyone with an accent to care for her.
Wandering was frequently mentioned in the previous pages. This, too, is a part of the disease which one cannot change or cure. One can put it to good use, however, to maintain mobility, increase appetite, and to promote sleep, by giving plenty of elbow-room to let residents pursue this ingrained need. Attempting to change this behavior with medications, that help “relax” the resident may cause problems in balance, unsteady gait and ultimately may result in a fall, and the “relaxed” person may end up in the hospital with a broken bone. If the resident has walked so much that he appears exhausted and still cannot stop, one — of course — has to intervene, as one would with any persevering activity, and help the resident relax by sitting down with him, or her, giving a glass of milk, or cookies and put on some calming music of the elevator kind, or a Lawrence Welk video-tape. This latter always worked in bringing about relaxation. It appears that not only the Lawrence Welk style music works magic, but all the dance and harmony of action in his shows. Alzheimer’s residents internalize these shows and accept it as a substitute for their own action; they seem to live through the dancers by watching them and they are visibly satisfied.
Occasionally people other than Alzheimer’s were admitted to the unit suffering from various mental and emotional problems. Our Alzheimer’s residents immediately picked up the “difference” in their diagnosis and behavior and systematically left these residents out of their sphere of activities. They almost formed an Alzheimer’s club within the unit, unable to tolerate the frequently noisier, more demanding, behavior of these newcomers. Their behavior showed a drastic change while these residents remained in the unit. Agitation mixed with fear and apprehension became the order of the day.
It is important to keep a record of behaviors judiciously. We keep a separate record for each resident. It is a simple sheet listing the following data: his/her name, room number, the specific unexpected behavior, the preceding event, date and time. Their uses are varied: it helps to orient new employees to the resident, it may help physicians in deciding on the use of medications. It also may help in planning meals and activities, just to mention a few possible uses.
While it is imperative to know your Alzheimer’s residents’ likes and personality, the guidelines for a successful unit are remarkably simple. I remember once seeing an old movie, I think with Ingrid Bergman, where she played a missionary, saving starving Chinese children during a Chinese revolution. One of the Chinese officials attempted to dissuade her from this activity, fearing she could not accomplish this task. Of course he could not change her mind. “Why can I not raise them?”, the heroine of the film asked. “All I have to do is to feed them, clean them and love them...” The same principle will maintain an Alzheimer’s unit as well.
MEMORY
One of the first and foremost signs of possible Alzheimer’s disease is a loss of memory. At first it is subtle, yet the patient knows that there is something very wrong. He forgets where he put his car keys. He forgets the names of co-workers and later even the names of family members. He or she desperately tries to cover up this deficiency and solve this embarrassing problem on his own. All of a sudden diet and nutrition, vitamin pills, and exercise become paramount, although prior to the onset of this illness a healthier way of life did not very much interest this person.
Finally the memory deficit becomes tragically obvious and help is needed. Thanks to the efforts of support-groups, the Alzheimer’s Association and the ensuing professional interest of physicians and researchers, there is a battery of tests that may help to determine if the memory loss is due to Alzheimer’s disease, or if it is a condition that mimics this disease but which is entirely treatable. Only a few years ago we were not so fortunate.
Eve was in her seventies when she was brought in to our Alzheimer’s unit with profound confusion and all the classic signs of Alzheimer’s disease. This disease had just become popular with the medical establishment, but no diagnostic procedures were uniformly established in ruling it out. Eve always was a very independent and strong-willed woman. Her husband had died two years ago. She assured her children, who lived out of town, that she was all right and she could manage well, both financially and emotionally. the children — all adults and with families of their own — were so used to her being the family’s decision-maker, that they said a fond good-by after the funeral and left. they kept in touch through the telephone and all went well until two years later they got a telephone call from their mother’s neighbor asking them to come, because “there was something wrong...” As they arrived with the next flight, the neighbor told them that she had frequently found Eve in the middle of the cool California night, sitting on her doorstep, completely confused, not knowing who she was or where she lived. She did not recognize her, either, the neighbor added. After the neighbor returned her home, Eve would lock the door in apparent panic from the “intruder”. The family found Eve’s door locked. They had a key and let themselves in only to find their mother unkempt, unwashed, undressed cowering in the corner of the kitchen. She looked frightened, pale and weak. She did not recognize the children, but was too weak to protest. They washed and cleaned her and took her to the family physician. As she was showing severe memory loss, the physician recommended nursing home care, with the diagnosis of Alzheimer’s disease. That same week she arrived at our facility. As the family learned that Alzheimer’s disease is incurable they sold the house to pay for Eve’s expenses. In the meanwhile Eve settled into the life of the unit. She received well balanced, nutritious meals, her nutritional deficiencies were corrected, and she soon began to improve. Within a few months, she was back to her old self again, with not a hint of memory deficiency, or any other problem. As it turned out, after she began her life alone, and after the immediate concerns were taken care of after her husband’s death, she had a lot of time to think and to be alone. She gradually slipped into depression and neglected her meals. By the time the family was alerted she had been living on coffee and donuts for months, the local donut shop being within a short walk from her house. She would buy a dozen donuts and live on it for a week. She was under- and malnourished. Now with her nutritional status corrected, she was ready to go home, but there was no home to go to. Thus ensuing heartache. Financial problems could have been avoided had she gone through the more thorough examination process that is now available and becoming more and more sophisticated and accurate.
As residents arrive with Alzheimer’s diagnosis, the disease usually is already in its advanced stages with profound memory loss and the inability to sort out even the closest family relationships. Female caregivers — whether they are daughters, or wives — inevitably become “mother” to the afflicted person. Husbands very often become boyfriends again, someone to flirt with, or simply someone “nice”. Sons are often the most mistreated family members by an Alzheimer’s disease sufferer: seldom are they recognized by mothers, or fathers. So many times I heard them called “that man”, or “who are you?”, or worse: “Get out of here...!” In such cases an awful lot of reinforcement is needed, so the family members can differentiate between the disease and its dictates. May’s first support group was truly a groundbreaker in this direction. All the things that were meaningful in childhood are remembered fondly. Georgette still could name all her cats and dogs on the farm some sixty years ago, but would never recognize her wedding picture. She pointed at her picture as a bride and said: “Mother”. As we pointed to her husband standing next to her, and asked who he was, she gave no answer, probably lacking the proper word, or the memory of the man, or very likely both.
Memory — we found — can be enhanced, when it is associated with a pleasant experience. Once we attempted to put residents’ current pictures on their room-doors so they would know which room belonged to them. The idea never got off the ground: none of my twenty residents recognized themselves in these pictures. Yet they always identified themselves on our photos of the seasons, as they were standing at a summer pond feeding ducks, or in the middle of a pumpkin patch selecting their Halloween and Thanksgiving pumpkins.
Science is just beginning to catch up with what every Alzheimer’s caregiver has already known instinctively and by experience, that music enhances memory. Old children’s songs can rekindle long-term memory of childhood, but present information can also be successfully implanted with music. There are a few brand new songs our residents learned and managed to remember, and as I mentioned earlier they were also able to learn one-another’s names through these individualized songs. Science will tell in time how music stimulates memory. My instincts tell me that the pleasant feelings that are evoked by the appropriate music are primarily responsible for this, just as were the duck pond and the pumpkin patch. Nature wrapped every action that is essential to life into pleasant feelings to achieve its goals: it feels good to take a breath of fresh air, to eat a nice meal, to bring forth children and watch them grow. A smile and a pleasant feeling always goes a long way. Especially in managing the Alzheimer’s afflicted patient.
As reasoning, judgment, verbal expression become relics of the past, the memory of an Alzheimer’s sufferer has to be evoked and maintained — even increased — through the world of pleasant feelings.
On a glittering, crisp winter day, one may lead the Alzheimer’s afflicted to the window, help their palms touch the cold window-pane, giving time to experience the sight, the feeling of cold and then say: “cold” and “winter”. One may do this daily and one day the resident will surprise you. After you said “cold”, he or she will continue: “winter...”
Another pleasant experience is to sit quietly on a covered patio and listen to the patter of rain, or even touch the raindrops. This may bring back memories of water, along with its name. There are millions of experiences associated with pleasant feelings that may enhance not only the quality of life, but may bring back memories which are closer to the recent past.
Frequently residents remember an especially well liked caregiver who returns from a two week vacation. Perhaps the memory of a nice, nightly backrub, or the memory of a walk, or any of the other experiences bring back their names.
Clara, the lady who was a longer through a lifetime received a beautiful, large, red apple from a nursing assistant. The lady had no teeth to eat the apple with but she held it all day in her arthritic little hand, looking at its perfect shape, inhaling the fresh aroma. She held onto this apple for dear life and would not give it up for anything. From that day on, she called the assistant by name and she permitted her to share her private hours sitting next to her in her room. The ice broke, and from then on she let a variety of pleasant experiences into her lonely world.
Ann visibly started to fail. she became smaller and lighter every day, even though her appetite was excellent; she could not utilize food anymore. Christmas season arrived. One afternoon we were expecting the Salvation army’s visit. So we dressed her in a pink gown, propped her up with her lacy little pillows in the wheelchair, and covered her thin little legs with a pink blanket. She was pretty with her huge violet eyes which she opened only seldom these days, her brown hair, and still pink cheeks. She had not talked for years. Many doubted that she was aware at all of her surroundings. We who knew her also knew that she was still there: a thinking, feeling human being, who could never become a “vegetable”. But even we were not prepared for what followed. As the Salvation Army arrived with bugles and bells and bringing a festive air with them, Ann opened her eyes and clear as a bell, she started to sing “Jingle-bell...” She smiled, her little arms fluttered with delight. A few days later she succumbed to the disease. My little “Butterfly” — as I liked to call her — quietly and with ease fluttered away, through the window and probably settled down on a pretty pink cloud, from where she could hear the perfect music of the Universe, loud and clear.
DECISIONS
With the advent of Alzheimer’s disease, the caregiving families, or caregiving single persons are constantly faced with utterly difficult decisions, for which no person is adequately, or even remotely prepared.
The first difficult decision is whether to tell, or not to tell the afflicted person of the diagnosis. Since the cruelty of this terminal disease inevitably robs the patient of his cognitive faculties, it appears kinder, on the surface, to take care of the daily problems, but keep the diagnosis undiscussed, until the afflicted reaches the advanced state of the disease, when no more questions are asked.
Dan’s family decided not to discuss the diagnosis with him. They attempted to minimize the embarrassment of forgetfulness, or improper behavior, and they tried to cope with the disease as it presented itself, as long as they were able to do so. Yet, when the disease progressed and institutional setting was the only solution, his wife, going through her husband’s belonging, found little notes, written to himself, noting each step of the disease, with soul-searching remarks and questions of guilt, whether his life-style, his habits could have caused the disease and the disintegration of his job, and his family relationship. Had the family had the benefit of later knowledge, Dan’s feelings of guilt could have been alleviated; he would have known that Alzheimer’s disease would have come, regardless of his smoking, or not smoking, jogging or not jogging. and not only would he have had the comfort of a clear conscience, but he still would have been able to participate in some of the very difficult and crucial decisions concerning his care in the latter stages of Alzheimer’s disease.
I earlier touched upon the selection process of finding an appropriate nursing home. the most difficult decision prior to this in many a spouse’s life is the process of finding strength toward independent action, since a life-long dependency on the afflicted person’s opinion and wisdom must now be unlearned. the caregiver realizes this, yet may feel like a traitor when establishing financial independence. Many have found it impossible to take away the right of the afflicted spouse to sign a check, only to find — as was the case in Dan’s life — that he signed checks giving hundreds of dollars away to the neighbor’s milkman and to solicitors of various causes, without remembering that he had done so. He could have signed away their life-savings and their home with the same ease.
If it is hard to deny financial independence for loved ones, it is even harder to compromise physical independence by restricting their comings and goings, and eventually having to take away the use of the car. Physicians frequently like to give this responsibility to the family. If the early onset Alzheimer’s sufferer still can read and his eyesight is good, his driver license will be renewed unless his family member takes appropriate steps to stop it. Having a drivers license signals adulthood and independence in a youngster’s life. It is utterly difficult for any spouse to take this independence away. Eventually, for the Alzheimer’s disease sufferer’s safety’s sake, it will have to be done. Later the even harsher decision to limit physical independence even more will have to follow, by entering them to a nursing home. These steps are hardest on the family, because by the time these steps become necessary the patient has reached a stage of memory loss in which he seldom realizes the gravity and full extent of these changes.
But still more difficult decisions lie in the future; frequently unavoidable decisions over life and death in the latter stages of the disease. To institute artificial feeding or not? Should we withdraw only the food, or water also? Is it ethical to let a person, any person, die of starvation? Should we let a heartattack end the patient’s life, or should we institute resuscitation? Should a family decide on the use of life-extending technology, in favor of time-honored medical practices and the continuation of pain and suffering at all costs, or be in favor of a quiet, painless death out of the hospital? Where does love end and neglect begin? There are no uniformly accepted guidelines yet, except perhaps for the patient’s wishes. But the patient is unable to express them at this advanced stage of the disease. The family dies a thousand deaths, trying to cope and come to terms with these questions. The spouse mourns every day the loss of a family member in prolonged grieving process from which there is no escape. Then one day the patient quietly slips away. The family member dries the tears of release; the burden of decision making is lifted.
Just then a healthcare worker approaches and asks the unavoidable question: “Would you permit an autopsy? It is important to know for your future, for your children’s future, if your family member died of Alzheimer’s disease.” The family member knows all this, yet it is usually at this point that the anger of unresolved grieving sets in, openly and with full force.
“Don’t you ever give me any peace?”, Dan’s wife cried out. “Didn’t he suffer enough, now you even want to take his body apart? No, no, no! I don’t want to know anything. all I want is peace for both of us! I don’t want to have Alzheimer’s disease hanging over the head of the grandchildren if the diagnosis is confirmed!”. The children arrived, and after some crying, some quiet time, the decision was made for an autopsy. The last decision before the family, going through the suffering of Alzheimer’s disease, finally will have the freedom to walk toward a new life.
EPILOGUE
I attempted to avoid the technicalities of the nursing profession in dealing with problems of restraint-free Alzheimer’s care, in order to bring us to the full realization of our mutual human needs.
As soon as we caregivers allow ourselves the luxury of taking time to listen to one another, and then place the needs of our fellow human beings and life before our own selfish interests — from the businessman to the last humble worker of healthcare — and help one another in the realization of our highest human goals, all will be well.
I would like to thank everyone who touched and shaped my life, and helped to bring about this awareness — and this book.