Alzheimer’s is for Life
by
Ron & Dollie Baldwin
INTRODUCTION
We offer this document to share, guide, and instill in other care givers that they are not alone. That the experiences and frustrations are known by many before you and around you now.
Our Alzheimer’s patient is my father-in-law, my wife’s father, who as a human being exists but shows little of what made him her father. My wife remembers our patient in completely different ways than he manifests himself today. A very vigorous man he had run a dairy farm his whole life, until retiring and selling it to his son. The home he lived in, the past 20 years, was built by his own hands, inside and out.
He is currently 86 years of age, chronologically but reacts as a ten (?) year old. Because of many different aspects of dealing with him we have seen actions better expected of a minor child from about 2 to 10 years old.
Diagnosis of his condition came in 2004 after we had spent a few weeks with him and observed his behavior. Able to perform only the most basic of daily activities he was unwilling or unable to deal with change or the unexpected and showed no memory of most of his middle years. A visit to a neurologist resulted in the Alzheimer’s diagnosis.
With his wife hospitalized, it was immediately apparent that he could neither care for her or himself properly. Nursing home care was rejected as my wife felt that he could function well enough to live in a situation where he was monitored and cared for daily.
Thus began our adventure into the world of a full time care giver.
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Chapter One - Becoming Aware
My wife and I live in South Carolina and had for a number of years, so our contacts with her father were limited to short (a week) vacations and phone calls. From time to time stories of his ‘absent mindedness’ came from family and friends. These were not seen as symptoms of something more sinister for two reasons. First we were quite ignorant of Alzheimer’s, except to know it existed out there, and secondly as do most people, we did not want bad things to happen to those we love. As if by denying the possibility, they won’t happen.
When his wife became seriously ill, the summer of 2004, we went to their home for a extended stay to help him deal with her illness and day to day life. We had no concerns beyond those.
It didn’t take only a day or so of menial conversations with him to make us aware that something was not right. We began comparing notes with family members, neighbors and friends and came to the conclusion he needed a medical diagnosis. The doctor’s thinking, of mild Alzheimer’s, did not surprise us. My wife began reading some of the literature available and we could see that the doctor was right.
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Chapter Two - Manifestations
We include the following stories, not to titillate or belittle our patient but rather to share the many ways Alzheimer’s patients, their family members and others hid or refuse to recognize the problem. Some may laugh at what has happened but we write this to tell you that what is often laughed at can be a manifestation of a serious condition.
It all started probably in the mid 1990s when our patient’s wife would tell of them going for rides and getting lost on roads he had driven for years. She was in the process of developing Parkinson’s and had her own anxieties and the episodes of getting lost seemed to scare her. Nobody took her complaints as a serious manifestation of something that should be looked further into. To get home she would have to direct him. Finally she just refused to go with him.
When you have a person who could communicate his or her thoughts either verbally or by written missive, which can no longer join in a conversation and participate in normal give and take, that is a personal tragedy on a grand scale.
When you have a person who has experienced life for 86 years and can no longer translate that into stories for his or her children or grandchildren, you have a family tragedy beyond measure.
When the person you care for can’t remember what you did with them just yesterday, or last week, or last month. The loss of ‘quality of life’ is immeasurable.
When the person you are caring for questions everything you do for them as if it’s a punishment or denial by insisting that you are the one who is at fault and very wrong. It becomes very hurtful.
Choices or decisions became very difficult for our patient and he avoids making any primarily by saying ‘no’, if he feels that to end the question. Yet if you just say, ‘get ready for a walk‘, he will, as opposed to asking ‘do you want to go for a walk’? Which, invariably gets a ‘no’. All questions requiring thought are answered with ‘no’.
When asked why he didn’t want to ‘get out’ for air or exercise the answer was, “It means nothing to me”.
Our patient maintains an ability to deal with numbers on at least a rudimentary level. A game of Rummy is played quite well minus the subtleties needed to be a consistent winner. A checking account is way too complicated. Yet he holds on to a desire to review its contents regularly.
The almost pathological need for regularity will drive those more attuned to the daily adjustments needed in day to day life, up a wall. Our patient gets an idea that certain things are supposed to happen at a certain time and has a difficult time accepting change or cancellation.
Asking the same questions again and again when the answer has been provided again and again. Saying the same thing each day at approximately the same time and circumstances becomes quite predictable.
Time seems important with incessant asking of ‘what time is it?’ Yet relatively short passages of time are seen as ‘all day’ or ‘all afternoon’. ‘Didn’t we just have breakfast?’ when in reality it occurred four hours prior. Or ‘Supper time? Didn’t we just eat?”
An insistence that he can do everything as he has always done causes the greatest strains on the relationship.
The most difficult to deal with is the privilege of driving on the public highways, or the denial of that privilege. Because Alzheimer’s and old age go hand in hand the loss of motor skills, sight and hearing add to the patient’s frustrations.
Having heard the stories of driving trips to once familiar places becoming problems of disorientation coupled with the loss of motor skills, sight and hearing we knew we had to stop his use of any vehicle. This leads into Chapter Six.
As the condition has advanced, and we are now convinced that it started years ago, our patient has lost any ability to exercise his mind. While he can read words he has lost all ability to comprehend their message. He sets for hours reading but can not tell you what he has read. He will set for hours watching TV, and can not tell you what the program is about unless it is a baseball game. This he recognizes but can’t tell you who is playing or how the game is progressing.
To deflect any in depth questioning that may give away his inability to cope most any direct inquiry is answered with a ‘smart aleck’ remark or action. “Don’t forget your cane” results in him carrying his cane over his head. A request for him to turn around becomes an episode of turning and turning.
A child like approach to personal hygiene is a constant problem for the care giver. Certain steps in cleaning one’s self get dropped. Like no toothpaste on the toothbrush or not soaping down in the shower. The regular routines of personal hygiene seem to become a burden to the patient.
Because of our human tendency to regulate ourselves by the clock he could remind himself to do certain things by the time of day. Only things that were regular in his life could be deal with. Take away his clock and he has no idea of what to do when.
The use of a clock as a means of reminder becomes all important in their cover up scheme. Unable to see a clock they will constantly be asking, ‘What time is it?’
Unwillingness to wear new clothing or footwear, by insisting the old ones are more comfortable despite the fact that they are badly worn or in need of replacement.
Our patient seems unable to conceptualize anything. Comprehension of the simplest everyday situations is not there. An episode of throwing up one morning and refusing to drink additional fluids resulted in an episode of dizziness the next morning. A discussion of how the two were probably related resulted in complete denial of the possibility.
Seeming to have no memory of his first wife or her tragic death, the recent loss of his second has manifested no outward sign off loss. His emotional detachment will be mentioned in more detail in a later chapter.
As our adventure has progressed over the months a role reversal between him and his daughter has developed. He refers to her as ‘mother’ and insists that he know where she is and exactly when she will return. When she leaves our home for church or other activities he will go to bed until she returns, not even the TV can draw his interest.
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Chapter Three - The Mimic
Denial of the condition not only shows up in the patient’s family and friends but in themselves as well. They either can’t or won’t accept the fact that they are having problems and need help. Our patient learned very early how to ‘cover up’ and to pass off concerned inquiries as of no consequence.
One of the ways, we have observed that our patient attempts to hide the fact is by imitation. He will wait until others around him chose their food, butter their bread or any one of a hundred other actions then he will make the same choice or complete the same action in the same way. To a casual observer he would seem normal. Left on his own he often just looks about waiting for others to begin.
Everything must be done the same as before. By being able to predict what his next move should be he feels he can appear ‘normal’ and therefore without problems.
By our eating the same things at the same time it was easy to get the patient to eat good nutritional foods. This would, of course, probably extend itself to the need to monitor a diabetic’s diet. This type of discipline would not harm the care giver and just might improve their overall health as well. Our one big problem is to get him to consume adequate amounts of fluids. As much as we let him see us taking drinks throughout the day, he will not mimic that.
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Chapter Four - Denial by Close Relatives
This chapter will step on some toes but it must be written.
As I have mentioned our patient, my wife’s father has a son who incidentally lived just under a mile from his father’s home. To get out, the patient often drove to the son’s farm to observe and help if possible. With the passage of time things change but his son didn’t or wouldn’t see the change in his father’s abilities.
Yet he would tell of sending his father to a farm implement store less than four miles distant, that he had done business with for years, and how his father could not remember the way there.
His son when presented with evidence of his father’s decline, would try to explain it away and make jokes about it. No effort was made to help deal with the results of the disease.
For example, when my wife got the car keys away from her father, his son gave him the farm truck to drive. He explained this by saying, “He only drives to the farm and back.” That his father had to drive on two county and one state highway did not seem to impress his son that his father was putting himself and any other driver, that happened along, in jeopardy.
This kind of denial while possibly shielding the denier from the truth is most cruel when the denier could have accepted the obvious and gotten help for the patient years before.
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Chapter Five - Medications
While at the current time, Alzheimer’s is irreversible, the medical community has some drugs that show promise of delaying the progression of the disease. It is certain that whatever is tried have different effects in each patient and drugs that seem to promise months of delay, such as Aricept and Nomenda are little more than band aids on a severed limb.
Often the elderly patient is on a regimen of many drugs and no one can say for sure if they inhibit or enhance the new drugs.
It is very easy with an elderly patient to get in a cycle of ‘specialists’ for medical care. We found that by placing our patient with a ‘general practitioner’ who monitored ALL his medical contacts, that we were more comfortable with his overall medical decisions. Under such a program several medications given back in NY were either changed or dropped by his primary physician.
The whole concept of care giving is to not only extend lives but to also make them of the highest quality possible for the patient.
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Chapter Six – Moving the Patient
As I have pointed out, we live in South Carolina and we will not move back to New York even to take care of the patient, in a familiar environment to him. Other factors come into play in our decision to bring him here.
Following the best advice we could find, we moved all his bedroom furniture, his electric recliner, pictures, and bed linen. My wife worked diligently to arrange everything as best she could to replicate his living space in his home. We set him up in the bedroom with adjacent bathroom to make things as easy for him as possible. We even went so far as to put dishes and breakfast foods in similar cabinets to what he was used to dealing with.
He won’t take any initiative toward getting his own breakfast, says he don’t know where things are. He would wear the same clothing every day, including under wear, if my wife didn’t pick up the dirty ones and lay out clean for the next day.
Because the local cable has a different station arrangement he won’t use his TV, says he can’t find the sports channel he likes, even when shown repeatedly what number it is available on.
Food here tastes different than it did back home, even when we buy the same brands in the same national food chain store.
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Chapter Seven - Methods That Worked (for us)
The available literature is full of ideas that one can try with an Alzheimer’s patient. Our experience is that what seems reasonable should be tried, but the care giver should not expect much. Win your battles one at a time and don’t let the failures get you down; there is usually something else to try. And if all else fails be prepared to find acceptance for things the way they are. Forcing actions, food or liquids does not work. Rather, looking for a way to ‘fool’ them into complying shows more promise.
One of the biggest battles was the car keys. Having someone disable the vehicle by disconnecting or removing the center wire on the distributor was very effective. When he tried to start it the car would not start. This opens the door to having it towed, supposedly for repair that never gets done. This little bit of dishonesty may entail a story of parts hard to get or a shop too busy to get to it.
To get our patient out of a pair of shoes with flapping soles and broken down backs we used a variation on the repair scheme. Don’t let your conscience bother you, keep your eye on the goal of providing quality care and as good a life as possible.
If you raised children, remember some of the ways you elicited their cooperation. Many of them may work on your patient.
Our patient will not drink the amount of doctor recommended fluids. We tried using a larger glass but filling it only about three quarters full. The ruse works most of the time. We found that if we poured his drinks he would get more than if he poured them himself. We keep a steady supply of grapes and bananas available to him for snacking.
Being 86 and with arthritis in his spine his present doctor is amazed that he can walk at all. The patient has been evaluated as a ‘fall potential’ and recommended to use a cane at all times while on his feet. When ever he is taken from our home he is very cooperative about using the cane. In the home it is a constant battle even though he staggers wherever he goes. He steadfastly maintains that he doesn’t need it indoors.
Getting him out for walks is a hassle so we have to be content with short walks. To get him out on longer excursions we convince him to ride along in a chair on wheels as one of us pushes. He will not propel himself in a regular wheelchair.
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Chapter Eight – The Care Giver
Of primary concern is the health of the care giver. An ill or disabled care giver can not discharge his or her duties properly. Getting proper nutrition and rest is of paramount importance. A tired or ill care giver has a much shorter fuse and you must cope.
That there is anger and frustration in being a care giver is only to admit to its existence. You WILL have to have help coping! Reach out for it.
Knowing that there is a network of support just waiting for you to reach out is invaluable. Immediately upon taking on the responsibility of a care giver make contact with your local Alzheimer’s Association. Utilizing their guidance, find a support group that meets regularly and attend those meetings.
Arranging for the patient to have a home care nurse on a regular basis can give a care giver valuable time away to take care of their own needs. An organized place where the patient can visit regularly can give him or her stimulation not easily given in the home. Get busy on these arrangements as soon as you take the responsibility.
The Alzheimer’s Assoc. has been helpful in providing names of Adult Day Care centers and home health providers especially trained to handle Alzheimer’s patients.
There are many books that can give you guidance and insight. One we found to be very good is, The 36 Hour Day, by Nancy L. Mace, M.A. and Peter V. Rabins, M.D., M.P.H. You will probably find yourself reading and re-reading as the disease progresses. The local library is apt to have other books about the disease and what to expect. We would remind you that while each case has similar characteristics each usually has unique aspects.
The decision of where you intend to take care of your patient should not be made in haste. Think about it as long as possible knowing that not every change you make will have positive results. Remember, when the long nightmare is over you must get back to living your life.
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Chapter Nine – Retrospective
While growing more and more dependent on his daughter, our patient resists having anyone else in the home to assist him. Friends that volunteer to set with him while we go out in an evening as well as home care nurses are at first immediately rejected as unnecessary. Persistence is the only way to win. You will know what is best for the patient and knowing that you will need ‘time away’, you must persist in sharing the burden.
We have had a unique situation in that being close in age we had both retired from full time working and so could share the burden of someone being here at all times.
Anger and frustration will well up in any care giver, divorcing yourself of this truth only means that it will grab your attention later and possibly at a time it is extremely difficult to control. If the care giver is ill or in pain in any way the patience to do this task is much harder to hang on to.
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Chapter Ten – A Daughter’s Agony
My Father will be 86 years old on Feb. 12th, 2005. He has Alzheimer’s disease something that has been showing itself for several years as what many of us thought was just ‘old age’ and a ‘little dementia’. Last Spring with his second wife hospitalized my husband and I spent 2 weeks living with him. It was then that I knew something was not normal.
My brother did not wanted to recognize that there was a problem. His wife suggested having Dad evaluated by a neurologist who then diagnosed him as having Alzheimer’s.
It’s a terrible disease that gradually destroys the brain cell connectors and causes loss of first; day to day memory; advancing to the loss of older memories and finally the loss of bodily functions. In some it progresses fast and in others it advances more slowly. My father’s case seems to be of a slower nature.
We can see now how he has learned to cover up his inability to function in this world and only those close to him, like his second wife, really knew he had a problem. We all realize now that she helped him cover up. While my brother, working beside him day after day, wouldn’t accept his father’s failings. The two of them formed an unspoken conspiracy of denial.
I ask myself the question, “Who was this man who gave me life?”. I am not sure I ever knew him.
Born in 1919 near Hobart, NY to dairy farming parents he graduated from the Bloomville, NY high school in 1937. He married my mother in 1940 (she died in 1978 and Dad remarried in 1979), I was born in 1942 and my brother in 1945.
As of my father’s childhood and young adulthood I know nothing. I have learned that he did play some baseball in high school and learned to play his father’s fiddle. I never heard him play any instrument nor saw him ever play baseball. I have no knowledge of his interests or friends while he was growing up. I know nothing of how he met my mother or how their relationship developed. My parents lived their whole life believing that what ever they did or thought was nobody’s business but their own. They discouraged inquiry from me or my brother. Their story was never shared.
Dad was a hard worker who made his dairy farm his whole world. Looking back it seems to me that he knew little else.
I have no memory of my father as a ‘loving’ person. He always demanded perfection, yet I have no memory of being praised for any accomplishment.
The atmosphere I was brought up in made me a very ‘sensitive’ child with very low esteem. My childhood memories are of scolding from my father and spankings from my mother. As a small child I was to stay out of their way and fend for myself. This continued until I was old enough to help out with farm chores. Neither myself nor my brother were allowed to ever question my father about anything! We were never allowed choices, given guidance or allowed to explore for ourselves. When my father spoke we jumped!
My father spent his whole life measuring everything by its monetary value, it was as if money was his God. When others might respond with love or affection he would respond with money. Any physical thing that came up, a building, a bridge, a dam, was measured by its probable dollar cost no thought or comment on its use. Time spent enjoying life was not allowed as it took away from good productive time.
He could demonstrate an unusual ability to deal with figures, able to add a column of 6 or 8 digit figures in his head accurately. He kept his own business records and did his own tax reports up until he formed a partnership with my brother. Keeping a checkbook and records was all done without a calculator, accurately. Sometime in 2004 he became unable to keep his checkbook properly or understand the statements from the bank.
One of my angriest memories is his reaction when I wanted a saddle horse to ride. Why, such a horse had no value as it did no work and ate hay (of which our farm always had plenty)! Farm cats abounded for me to play with and they did keep down the mice population. There were other things denied me because of cost but this was the most hurtful. By this time in life I was a full time worker around the farm when not in school.
Another ‘bad’ memory is having been sent to Albany Business College only because his mother had graduated from there. I desired to attend Cobleskill Ag & Tech, a smaller school in a smaller community, which offered the same classes plus some in the agriculture field I would have liked to have taken. Father said , flatly, “No!”. I was out of my element in a city the size of Albany, having lived in relative seclusion outside of Oneonta. Even today I have bad feelings about the experience.
Looking back, I long for good memories to help me relate to my father in a positive way. I do remember making a family trip one summer weekend to Plymouth, MA. In an old picture album I have pictures of going to Ausable Chasm and Fort Ticonderoga, NY, also a visit to the Catskill Game Farm, but no fond memories to go with the trip memories. There are memories of family reunions, always a ‘trial’ for me. Squeezed in between milking and on Sundays, they took away from my few free days. One small memory of being taken to get an ice cream cone (small), after a long hot day in the fields gathering hay, perhaps once a year. Having lived under his roof for 18 years, it saddens me that I can sum up the good memories so quickly. Many a night has been spent in retrospect searching for any memory of a positive nature. I find little to hold onto that wasn’t prompted by my mother, who of herself was not an affectionate person.
One evening I attempted to discuss with Dad, our old neighbors and occurrences that took place with them. I fed him names and home locations and he could not recall but a single one of them, a farmer Dad rented land from prior to purchasing the old Tyler homestead below our place.
On another occasion I talked with him about his 50 years+ membership in the New York State Grange. He could not remember having joined at Kortright, NY and having served in nearly every office of the Otego Susquehanna Valley Grange and on most of its committees. Having one year attended the NY State Grange meeting he seems to have lost all memory of these activities.
Of course I have to point out that the loss of these memories are an assumption on my part, each incident of invoking them is meet with ‘smart’ comments meant to be jokes and ‘deer in the headlights’ stares when asked to tell what he can remember. I find it personally hurtful that all this family ‘history’ has been lost, irrevocably.
Now with Dad living with us, I only see how he still measures life by its monetary value. Unable to comprehend how to maintain his finances, nevertheless the only involved conversations he initiates is about his money. I find it a source of anger and frustration to have to enter his world and only discuss ‘money’.
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Chapter Eleven – A Son-in-Law’s View
The summer of 1956 when I was 14 I began hiring out to several different farms doing part time harvesting labor. My present day father-in-law owned one of those farms. The farm was a side hill dairying operation that provided his family of four with a modest living. He was active in the Otsego County Grange and a member of the local volunteer fire department. Well known and liked by his neighbors he was socially active among a circle of couples that made their livings in the same way.
My memory of him was as a strong, likeable man who always paid at day’s end. Every summer from 1956 through 1959 I assisted him.
In 2000, while on vacation I stopped by his home to inquire about his daughter, at that time he had no memory of me or our past association. At the time, it meant little to me and certainly wasn’t tied to dementia or Alzheimer’s. After all it had been 40 years and people do forget.
By the time in 2001 that I came into more frequent contact with him I was amazed that a person could forget so much of his life’s history. He and his second wife of 15 years were living in the log cabin home he had built in the late 1970’s and to all appearances they were able to take care of each other. But by now we began to here the stories of getting lost and not knowing how to get anywhere he went to infrequently.
The process of cover up and denial was coming unraveled. When his wife got seriously ill and we went north to help out it became quite evident that he was in danger from memory loss resulting in forgotten medicine, missed meals and dishes left on the stove with the heat on.
Now that we have taken on the responsibility of his care the need for such care has become even more evident. Only by daily contact and observation can you begin to understand what a ‘make believe’ world the patient lives in. Any similarity to ‘normal’ functioning becomes a figment of the care giver’s imagination. The person once known, no longer exists. The human being you deal with seems more a hollow shell that has no past and can’t plan for a future.
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This is our situation as of 10 February 2005. Further developments will result in additions or changes to this document. Anyone seeking further information or help can reach us at [email protected] or dollieab @ronsbooks.net .
Chapter Twelve - PROGRESSION IN OUR PATIENT
2/22/05
Earlier I alluded to the fact that he had begun to look at his daughter as his ‘mother’. In just the last few days this has become more demanding in nature. He makes ‘sounds’ whenever he moves from a chair, his bed or in and out of a vehicle. When asked the reason for the ‘sounds’ he professes a desire to talk to her but when asked what he wishes to talk about his response is, “I don’t have anything to say.” We can only put the ‘noises’ off as attention getters. Like a small child he is trying to be the center of attention.
We have solicited background information from several friends and family members. One writes that he used to be very active in farm oriented organizations. That he stayed on top of new ideas in farming and was never afraid to try new things or equipment. That their frequent get togethers were amicable and he seemed genuinely interested in his children’s wellbeing.
Today, if the news is on the TV he takes no interest in it. He only reads the ‘comics’ page of the morning paper. No sign that he can relate to us anything he has read, despite our getting him several books that are ‘farming’ related.
While he spends time with us watching shows or movies he can’t follow the story lines and always asks, “Is that the end?” when the show terminates.
Today my wife has taken him for tests preparatory to having an ‘out patient’ procedure to cauterize cancerous spots in his bladder and a place in his urinary tract that often bleeds. This will be the third session in preparation for Friday’s operation. He never asks about what is going on. Instead, like a small child he does as he is told.
A few nights ago we were watching a TV show when he suddenly asked my wife, “Did we finish the spaghetti I got out of the freezer?” There never was any spaghetti in the freezer, he never gets any food out, there had not been an ad about spaghetti, we had not eaten any in over two weeks. What triggered this inquiry baffled us.
When we are setting together he never starts a conversation, when he is at the Adult Day Care with over a dozen others he comes home and complains that they never talk but ask him if he tried to talk to any of them and the response is ‘no’. He often complains that we do not talk to him but ask a question of him either gets a ‘smart’ remark or a ‘deer in the headlights’ look.
It is either too hot or too cold. The food all tastes different, he cannot identify what is put before him. If he has an ‘accident’ and wets his clothing he will not clean himself up and put on clean ones. He gets belligerent if we point out that he should change or go to the bathroom more often or sooner to avoid the ‘accidents’.
At bedtime he drops his clothes at the side of his bed. When my wife picks them up to wash them he protests that they aren’t dirty.
Taking him off of the Aricept and Nomenda seems to have brighten him up as opposed to being ‘doped up’ and sleeping a lot, while taking them. On the downside he has become more demanding and belligerent. A very recent development has been his wanting to read while we watch TV, not sure yet where this is going.
I tell you truly, trying to navigate these waters is very difficult and full of frustration.
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Feb. 26, 05
Bob is home from procedure to cauterize bleeding in his urethra and bladder. Doctor found a suspicious mass between the bladder and prostrate, awaiting biopsy results. He eats well, sleeps fitfully, often awakening badly disoriented. Having a great deal of trouble coping with the tube and bag to collect his urine. Wants to disconnect it so he can relieve himself. Several times during the evening and night we had to interrupt his from removing the tube. Last night there was signs of decreasing bleeding. Today he still has trouble understanding that the tube and bag must remain in place even when he feels he has to relieve himself. His urine now is green the results of the medicines he is taking. One or the other of us was awake all night monitoring his condition.
Often when awakes he speaks of old friends or situations we have no awareness of. We ‘play’ along and he seems content. Awoke tonight and began getting dressed at 10:45 PM.
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Feb. 27, 05
Still has not comprehended the need or function of the tube and bag. We have trouble with him walking away and not remembering to carry the bag.
Tonight he suddenly bolted from his chair. When I got to him he awoke and said someone wanted him. He was totally disoriented and nearly fell.
Again he woke up and began getting dressed. Thought it was morning and not 10 PM, could not remember eating dinner. Has been disoriented all day, getting ready for bed at 2 PM despite our attempts to convince him it was afternoon.
All this is very upsetting to deal with. Any attempt to convince him otherwise is met with statements of derision. We can tell you, don’t expect gratitude from the patient. Do expect to be always wrong, too demanding and untrustworthy in the patient’s eyes. Although he will profess ‘thanks’ on occasion, usually at tucking in time evenings.
Observation of our patient shows that he experiences REM (rapid eye movement) every time he dozes. If he is awakened at these times the disorientation is bad. His REM dreams often awaken him and he’ll profess to have heard someone speak.
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Mar. 1, 05
Yesterday the tube and bag were removed. His ‘water works’ returned to normal.
He remains confused about where he is often awakening and thinking he is back in his home in NY. He often heads for the wrong room. When lounging in his chair, he can be seen going through motions with his hands that appear to be feeding motions or assembling of parts motions. He will awake when the ‘food’ didn’t go in his mouth and search around himself for where it went.
In the afternoon he left the apartment for the first time since coming here, said he was looking for his car.
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Mar. 11, 05
The confused state wore off after a few days, leaving him back to his ‘normal’ condition. Patient fell outside acting ‘smart’ on the walkway. Only superficial scrapes to one knee and one arm.
Diagnosis of the bladder cancer is it is aggressive and invasive. He has been taken to an oncologist for evaluation and treatment. Initial exam has the oncologist not recommending any aggressive therapy. A follow up bone scan and cat scan to determine the extent of spread. He has nothing to say about what is going on despite repeated attempts to discuss his situation with him.
Professes not to remember day to day occurrences or conversations. Has been having incontinence problems, is often found to have wet clothing. Will not say anything to care givers. Still being taken to a day care facility three times a week. Says he doesn’t like it there, the stimulation has no long lasting affect. He no longer wants to watch evening TV with us. Goes to bed between 6:30 and 8 PM, is gotten up at 7 AM.
A recent letter from his sister was only partially read then laid aside. He showed no interest in finishing reading the several page letter. While his glasses are proper for his eyes and his cataracts are still quite small we have observed a lessening in his desire to read.
The doctor that did his cancer exam remarked that he should be using a walker to get around, that his gait is too ‘fragile’ to be much helped by a cane. He steadfastly refuses to use a walker.
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Mar. 15, 05
Perhaps this would be a good time to add what friends and family members have written pertaining to the person our patient was as opposed to who he is now. One close friend writes, “ ...he
liked square dancing and playing pitch...community minded, serving on various committees. ... he had set ideas but never pushed them...was concerned about... farmers. He leaned toward being optimistic...his biggest fault...rather stubborn and too independent. ...as the Alzheimer’s took over he became more stubborn... he used humor to keep you from knowing his thoughts. ...enjoyed the mutual trips.”
A sibling wrote, “...as a boy he helped on other family farms...trapped muskrats...to earn money. ...the whole family would go ‘berrying’...he got an aviator hat for his birthday in 1929(?)...another year he got a hatchet that he took to bed with him. ...next year he got rubber boots and slept with them. ...at 11 or 12 he had a friend with whom he built a log cabin for playing...in the 7th grade he got the job of starting the fire at school before the rest of us arrived...as children we played many card games...he worked on a farm near Bloomville until...moved to Oneonta(1938)...he and Dad partnered on a dairy...was a good son...in school...popular with the girls... well liked by the boys.”
Another family member writes about how our patient’s mother went into decline at near 90 years of age and how she was a burden on the family members who tried to be care givers. That this eventually lead to nursing home care and while there she lost all memory of family members who would stop for a visit.
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Mar. 20, 05
Prior to the bone scan they injected our patient with a ‘dye’. As with the anesthesia it had a bad effect on his attitudes. For two days he resisted things more , like drinking the fluids given him, showering or using his hearing aids. Then he seemed to brighten up and be more cooperative.
An on going problem that frustrates him and us is bladder control. At his age some problems are normal and the bladder cancer is probably exacerbating the problem. He continues to have trouble holding his urine until he can get ready at the toilet. This results in his wetting his underwear and outer clothing several times a day. He will not get dry underwear or share that he has had an accident. Often we aren’t aware until his odor alerts us.
Earlier we turned to male diapers of the pull up type and he complained continuously so we tried to let him go back to men’s briefs. His wetting incidences have increased so that we will go back to the pull ups and work on getting him to change more often. This morning my wife tried to explain to him the aging and cancer effects on his urinary system, we don’t know how much was absorbed, but hope it will aid in the transition to the pull ups.
At the Adult Day Care they take each patient to the restroom every two hours, he comes home wet anyway. We have tried to remind him to go every two hours and he verbally resists. Sometimes he will get up and go.
His oncologist found the bone scan to be clear as well as the cat scan. This doctor has had multiple experiences working with Alzheimer’s patients and understands how aggressive cancer treatment can further disorient and cause rapid progression of the dementia so at the age of our patient it has been decided to not try to stop the cancer. Instead, with a realization of no chance to improve his life, we will monitor him and attempt to keep him as comfortable and unstressed as possible.
We are planning a ten day/ two week trip to NY at the end of May. The doctor said that he agrees that the patient would not be able to handle such a transitional occurrence minus the cancer, but factoring that in that he will probably have to be placed in a nursing or hospice facility well before then. We continue to plan on the trip, if he has not progressed to full time nursing care we have made arrangements for a short term stay at a nearby facility.
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Mar. 24, 05
I transcribed the long letter from our patient’s sister, printing it at a 14 font with double line spacing. Where he had seemed unable to read her hand written form he did read all the way through in this format. His first reaction was, “She didn’t say much did she?” We found the letter to be very informative and comprehensive about their childhood. Further questioning seemed to point to things he felt was more important in his growing up than she had referred to. He mentioned playing basketball and baseball in high school. His daughter continues to use the occasion to question him further and has him relating memories formed after moving to the farm outside of Oneonta, NY. (Jan. 1939) This shows memory retention of his first twenty or so years. We continue to delve into an evaluation of what memories are lost and what their time frame was. He is quite reluctant to share his memories with even his daughter, stating that he doesn’t know of what interest they should be to even her. At the current time the lost memories seem to stem from the early years of his first marriage forward to now.
He shows no capacity to understand that interaction among adults includes showing appreciation for things done that did not HAVE to be done. To his present way of thinking anything done, he had coming to him. Yet because of his independent attitude he is very reluctant to ask for anything, except to go back to doing things the ‘old way’ where we have had to make changes.
It is very evident that the ability to comprehend has been severely impaired. This requires going over the same things over and over again.
To those of you reading this that are contemplating being a care giver to an Alzheimer’s, dementia, or extremely elderly family member, do not go forward expecting cooperation or appreciation from your patient. It is very possible that they are incapable of being cooperative or appreciative. Look for these personality traits before you become fully committed to being a care giver. Your sanity depends greatly upon this kind of evaluation. No one person should ever place themselves in such a care giver situation without close help at hand, be it a spouse, son or daughter or other person who can step in at a moment’s notice. Further thought must be given to what will happen if you no longer can be the care giver. Who will be responsible to see to your patient’s well-being?
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Apr. 3, 05
Our patient holds tightly to the predictable path of gradual decline known to be representative to Alzheimer’s and dementia sufferers. He cuts back on his intake of fluids, seldom drinking all that is given him or asking for or getting more for himself. No amount of discussion or cajoling has any effect. He is often observed smacking his lips as any of us might do when thirsty. When offered a drink he declines to drink. As we have been told, he will eat something when this occurs so we try to keep moisture rich fruits available to him. I am very concerned when hot weather comes and we need to run the air conditioning. It tends to draw the moisture out of everyone.
One day he is very docile, reading and napping. The next he may be quite restless, demanding we provide stimulation. When he demands that we talk with him he cannot or will not participate in a conversation. He primarily just wants his daughter to be where he can see her at all times. Her every movement or activity out of his sight causes him concern and she must account for her absence. He can’t or won’t discuss the reading he does, the same with TV shows.
This past week the Home Care workers have begun their regular scheduled appearances. One comes to help him bath completely, another comes to work with his mobility and yet a third checks on his vital signs, medicine intake and generally oversees the whole program of in home care. He continues to go to the Adult Care Center three days a week.
Things that he fights us about, he will gladly cooperate with these helpers. It is very apparent that he loves the attention of strangers and will do as asked to get it but our attention is expected to be available without his cooperation.
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Apr. 10, 05
The decision has been made to move our patient to a full time Adult Living Center. He will have a private room, access to TV, common dining room and indoor and outdoor (covered) seating areas for reading, conversation etc. Home Care will continue to monitor his health and provide physical therapy. The Adult Care Center visits will be stopped.
The frustrations of trying to get cooperation and understanding have taken their toll on my wife. He swings between the present and the past, needing constant reminder of where he is, what is gone and will never come back as well as what is happening.
Yesterday he asked many logical questions about what is occurring. While he has trouble contemplating and absorbing some facts he is at present quite docile about the move tomorrow.
His grasp of past facts is minimal at best. He no longer seems able to remember his financial status despite repeated reminders. He cannot recall that he had previously given his daughter ‘power of attorney’ over his affairs. This morning he wanted to know where everyone is when he got up. His daughter told him and then he asked if his son was in the barn. Told that it was unlikely, that the dairy has been sold and his son now driving bus he had a look of total loss, despite having been told numerous times about the changes in his son’s life.
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Apr. 17, 05
A visit to our patient at the Adult Living Center found him sleeping in mid-afternoon. The staff indicted that he spends most of his time in his room. When he is up and about the place he does not attempt to talk with anyone. They report him to be cooperative in what they require of him.
He tells his daughter that they don’t do anything around there and no one talks to him. When she tells him that he should ask about activities and start conversations he asks, “What do I talk about?” When it is suggested he can talk about his past life and ask about theirs he just stares blankly.
Asked if there is anything that can be provided him he responds, “Bring me a wife”. This represents nothing more than a desire to have someone near that will jump to his every whim. This represents that constant need for attention, like a small child.
He eats well and moves about the facility without help.
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May. 1, 05
Subsequent visits find our patient about the same. Complained about discomfort when urinating, so we took him to his Oncologist for a check up. Are awaiting test results.
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May. 21, 05
Visited twice a week our patient seems settled into the Adult Care Facility. He was placed on antibiotics which apparently have relieved the discomfort.
Mentally he has lost the ability to connect people and events in his life. Needs prompting whenever talking about any family member and his connection with them. Often thinks that his relationship to any certain person is different than reality. Not able to relate to time / space relationships.
Due to his condition we have determined to leave him at the facility while we make a trip back to upstate New York to attend to family affairs. Will be gone two weeks.
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Jun. 5, 05
Returning from vacation our patient was visited and found to be in good spirits. While he recognized his daughter he questioned the presence of various staff of the facility. Apparently does not recognize ‘new’ people and connect them to his care. The progression of memory loss continues while he continues to have ‘childlike’ reactions and comments.
His questions shows confusion of past occurrences and the present. Stated an awareness of being unable to carry on a conversation. Fully settled into the Hospice program which now oversees his care and monitors his progress.
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Jun. 10, 05
Our patient has attached himself to a female patient and refers to her as ‘Aileen’, his dead wife’s name. He is suffering from swollen ankles and feet. The doctor can’t treat him for the condition as the medicine would drop his blood pressure too low. He has been told repeatedly that he needs to set with his feet up to help relieve the discomfort but he refuses to do as told. The staff reports recent incidences where he has raised his hand as if to strike them. He is becoming increasingly belligerent toward the staff, especially when they try to get him to bathe. He continues to have urinary and occasionally bowel accidents calling for frequent bathing. Dollie has been told that the swelling is a symptom of the bladder cancer.
For the record – While we were on vacation the regular hospice nurse was replaced for one visit. The replacement then proceeded to ‘discharge’ our patient from the program obviously never looking into his medical records (You don’t get into this program unless you are rated ‘terminal’ by your doctor.). This fiasco was quickly detected when we returned and the patient never was in lack of regular nursing care. A warning to care givers everywhere, don’t assume the ‘professionals’ know what they are doing. Check constantly and question often.
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Jun. 14, 05
At today's visit the patient wanted to leave and go to his dead sister's house. He is unable to comprehend why his feet, ankles and lower leg are swelling up. He will not set with his feet up. His insistence that he be allowed to leave had his daughter quite upset. A Hospice social worker has started weekly visits along with a Hospice nurse and Hospice aides will be checking to help with bathing and whatever.
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Jun. 24, 05
This entry covers several visits to the patient. On June 15th his grandson and family made an evening visit. The patient was alert and involved in the visit. On June 17th in the morning they again made a visit prior to heading home. Again, the patient was alert and participated in the visit. The next day his daughter visited again to deliver some medicine. She found him out at the gate with his hat and jacket on with several personal items tucked under his arm. He stated he was trying to get home to help his son with the hay that had been cut that morning. He would not listen to reason either from the staff or his daughter. Finally talked back into his room he immediately fell asleep. Due to his actions and refusal to comply with the staff it was decided by his doctor that a mild sedative would be administered with his daily meds. Another visit on Monday found him in his room in good spirits and showing none of his earlier belligerence or hostility. His legs remain swollen and the staff reports evidence of blood in his urine.
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Jul. 14, 05
On July 6th The patient’s son and his family paid him a visit. The patient was alert and participated in the conversation in a limited basis as usual. The following Sat. (July 19th) They all visited again. This time the patient was found to be agitated and requesting to be taken home, The staff reported that he had been active nights and sleeping days (Sundowner syndrome). It was thought that the sedative being used was at fault. A change of medicine had him quite peaceable when visited on Mon. (July 11th). His lower legs and feet remain swollen. He continues to eat well and quickly consumes all snacks and fruit provided by his daughter. There is an apparent weight loss as his face and arms are thinning. The Hospice folks have someone seeing him nearly on a daily basis either as a medical check, to help with his bathing, or just to visit. When asked if he has had visitors he professes no memory of anyone being there. He does recognize his daughter and I when he sees us. There are weekly exchanges of observations between his daughter and the Hospice people.
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Aug. 6, 05
Several visits over the past few weeks has seen a slow decline in the patient. His legs and feet are continuously swollen. He has begun to decline walking any distance. The staff reports that he often fails to finish his food and snacks provided by his daughter are no longer wolfed down. Bleeding in his urinary system has reoccurred to the point that today he became quite messed up with his own blood. It is evident that his diapers will have to be changed more often. He seems comfortable while not able to comprehend why the bleeding continues. He was given the opportunity to talk to his son, daughter-in-law and granddaughter today by phone. He recognized his son but was unsure who each of the women are. The staff has said that they would keep a closer eye on his condition.
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Aug. 16, 05
Our patient continues to have swollen legs and bleeding from his urinary system. This morning the staff found him to be short of breath so they put him on oxygen and that perked him up. When we arrived about 1 PM he was setting in a common area where the passing staff could monitor him. He was cheerful and easily laughed about several things. Getting up to go to the bathroom meant removing the oxygen line and when he returned he was very white and short of breath. Reapplying the oxygen soon had him back to his previous cheerful self. When we left him the Hospice people were there manicuring his nails and he was enjoying the attention.
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8/16/2005 9:00 PM
We receive a phone call informing us that our patient, my wife’s father has died. They tell us he ate a good supper and went to bed as usual. Just before 9 PM he was helped to the bathroom, where a few minutes later he was found, dead.
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8/20/2005 11 AM
Funeral services were held and the body of Robert P. All was laid to rest beside his first wife.
2/20/2008
Document reviewed for typos, misspellings, and punctuation errors.
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