Alzheimer’s Care Runs the Gamut from A to Z
Recently, a member of the Alzheimer’s Association Education Committee addressed a group of residents, their adult children and caregivers at Chancellor Gardens, an Assisted Living Community that also offers skilled Alzheimer’s care.
Here is a summary of her remarks.
“I’m speaking to you as a veteran caregiver for someone with Alzheimer’s,” explained Annette Dunne, a member of the Alzheimer’s Association education committee and on the staff of Sheltering Arms Day Care program. “At first, I would tell people that it was my mother who had the disease, and then, because so many people are concerned that this is a hereditary condition, I would amend my comments to say my step-mother. No matter what we call her, this is a woman I love dearly.”
“Lois Martin Webb was my father’s third wife…and he was her fourth husband. Still, they managed to enjoy 30 years together before he died of cancer about 5 years ago. After he was gone, I brought her home to live with me. Looking back, we probably should have known something was wrong,” Dunne said, “but she and Dad covered her advancing problem quite well.. We had, of course, noticed some unusual quirks in her behavior over the years, but nothing to alarm us.”
“It turned out that she had lost her ability to read and she had real trouble making decisions. We had no idea that the kitchen had turned into alien territory, and that they ate out more and more often. Dad would cover for her by reading the menu out loud or making her selections. One time, when we were all going out for a meal, Lois came out dressed in the most outlandish outfit I had ever seen. She had layers and layers of clothing on, including her nightgown. I thought she was teasing because she didn’t want to go out to eat. That was only partly right; she really didn’t want to face all the noise and confusion of the restaurant. She didn’t know how to translate this refusal into verbal language so she sent us the best signal she could. She was angry when we told her how she was dressed embarrassed us. In her mind, nothing was wrong with her attire…she was dressed”
“When it came right down to it,” Dunne continued, “we figured that Lois had the right to be a little eccentric. She was the first woman on Normandy Beach and she had an exciting career as a Lt. and then Captain in the Army. Here was a woman that was used to taking charge, and it must have frustrated her terribly to steadily lose her memory and the loss of control that represented. Hindsight is, as they say, always 20/20, but I suspect that she’d had Alzheimer’s for the last 20 years or so and we just didn’t recognize it.”
“After Dad died, I was delighted to bring Lois home with me. After the first week, however, I wondered just what I had done. After I left for work everyday, Lois wandered around the house, going through my things, wearing my clothes, and was acting strangely from my perspective. From her world, however, she wasn’t behaving badly at all; she was working on survival.”
“Experience is the very best teacher and, for me and for Baylor’s Geriatric team. Lois wrote the book on difficult behavior. She was trying every trick in the book to regain control over her life that she feared was slipping away. Lois didn’t recognize our attempts to make her comfortable and to keep her safe as being in her best interest. In her new reality, we were incarcerating her and she had to escape any way she knew how. At one point,” Dunne remembered, “I watched her climb over a 6 ft. fence and, as a desperate measure, had to stop her with a full body tackle.”
“Lois and I have been kicked out of the very best places,” Annette told the group. “We tried three assisted living facilities but none were just right for her. I knew very little about Alzheimer’s Disease then and consequently misinterpreted just about everything Lois did. In my reality, she was really acting out. She would spend about 14 hours a day pacing and moving about. She just wasn’t able to sit still. Before long, she was ‘wandering’ into other residents’ rooms, rummaging through their things, and getting progressively more agitated. I simply couldn’t figure out what she was doing, and why she was being so busy. In her reality, she was being productive and had gone back to nursing. She would go in someone else’s room and look through their things to find a clue to who she was, or how to get back to normalcy.”
Annette had been a career educator, and taught high school English and Social Studies classes. But, with the new responsibility of caring for Lois, she made the decision to do “what teachers do when they need more information…” She went back to “school” to become informed about Alzheimer’s. After “devouring” everything she could find on the disease, she became a gerontologist of sorts and felt better informed about appropriate care.
“The most important nugget of information that I gleaned from all this study was the critical understanding about altered realities. I began to look at Lois’ behavior in a different perspective. That doesn’t mean that I had a new magic wand to solve all her problems,” Annette said, “It was more like a door opening. This new insight allowed me to see things from her side and perspective, from her world. What I saw previously as ‘bad’ behavior now was revealed as her attempt to regain her identity.”
“She was a nurse in the prime of her life, remember. So, when one of her care facilities called me to complain that she was particularly aggressive when they tried to restrain her, I figured it was time to take action. She had been wandering into other patient’s rooms, checking to see if they were cold, and covering them up. Now, they wanted me to come help restrain her. Think about this for just a minute. Was she behaving badly? It was more likely that she was doing something she remembered — behaving like a nurse. This experience gave me another piece to the puzzle of the person Lois had become.”
“Alzheimer’s Disease is a family disorder,” Annette stressed, “not because everyone in the family will ultimately get it, but because the whole family lives with it. In almost every case, the first generation — the sons and daughters of the patient — is profoundly affected, and grandchildren feel the impact, as well. One of the first realities of the disease you will have to learn to cope with, is that — as in some science fiction movie — this disease comes in the door at your house, and a stranger takes over the body of your loved one who has it. ‘This angry, abusive, combative, agitated person just can’t be Mom or Dad,’ you’ll think. ‘She has never behaved that way in her life!’ The more you try to argue with them or convert them to what you consider to be acceptable behavior, the more frustrated you — and they — will get.”
“The issues you will face in caring for a loved one with Alzheimer’s run the gamut — or the gauntlet — from A to Z. The sooner you accept that, in dealing with this disease, their perception of reality is the ONLY one that counts, the sooner you will be able to start making progress in your altered relationship.”
“Remember, I’m telling you this from first-hand experience. Lois and I really were kicked out of three care facilities because I was inflexible in my demands that she be treated with dignity and respect. I understand that professional caregivers are often overworked; I know they have more than just one patient to work with…but I absolutely insist that Lois be cared for in a way that will give her some sense of peace. Now, she is finally comfortable, in loving hands in the late stages of the disease. And, because I was too stubborn to give up finding a way to reach into her timeless world, I have been able to discover what’s ‘working’ for her, and go with that.”
“First, you learn to be a detective. You sharpen your senses and intuition and learn to decode messages. In the process — and it is a process — focus on how to stay calm without getting upset and living in a constant state of emotional turmoil. One of the realities is that you’ll have to modify your style of communicating with your loved one. If you stop to think about, this will make sense.”
“As people get older, they tend to resent folks younger than they are telling them what to do. I don’t like it, and I suspect you don’t like it. I know I can get kind of ‘prickly’ if someone persists in giving me orders, and so do they. Now, change your perspective for a minute. In the mind of an Alzheimer’s patient — especially if there is any kind of emotion or impatience in your voice — they start reacting to the sound before they recognize the words. Phrases like, ‘you have to…’ or ‘don’t do that…’ and other seemingly innocent instructions can trigger anxiety and an increasingly agitated response or downright resistance.”
“They will not be able to process complex instructions; all they can recognize is that you’re in their space and you’re making them upset and angry. The more agitated or confused they become, the greater the chances are that they will lash out with verbal abuse and accusations. And this abuse, I know from experience, can be the hardest thing a caregiver ever has to cope with. You think you are doing a good job…you’re doing the best you can…and all they can say is, ‘Why do you treat me like this…why are you so mean to me?’ And then, the guilt about not being able to do more…to be there for them more often…comes crashing back.”
“If you didn’t realize it before,” Annette pointed out, “you’ll realize when you are the target of verbal arrows that you are just not on the same wave length anymore. As an example to illustrate this: they say ‘I feel,” and you say ‘I think.’ Here’s an important piece of advice that may help you at this point: you live in the real world…their’s is another. You can shift, they cannot.”
“Lois had retreated to another place and time where she felt happy and in control and her actions were perfectly logical to her. Sometimes the environment in which an Alzheimer’s victim lives can cause behavior problems. Noises and shadows can be threatening sometimes (they call this ‘Sundowning’) and can cause alarm that someone or something is going to hurt them. The gentle brushing of a shrub or a shadow outside a window can become an intruder trying to break in. Being startled by sound or by touch can trigger an aggressive reaction. And, as they concentrate on one activity, they tend to shut everything else out. I used to call it ‘selective hearing,’ but they really cannot hear you when their entire focus is somewhere else, and it won’t do any good to complain about it. If you argue, you will always lose.”
“If you really want to communicate with a loved one with Alzheimer’s, concentrate on ‘where’ they are. Get to their eye level and establish good eye contact. Turn off the radio or TV so it is quiet, but not necessarily silent, in the room. Start a friendly, reassuring conversation with a smile, observe their need for personal space, and don’t make any sudden movements. And, when you have their attention, begin to talk about what you want them to know or understand. This will take a lot of patience, but communication is possible even if your loved one has lost verbal skills.”
“Many Alzheimer’s patients engage in the ‘blame game.’ If you’re human, this can really get to you. Guilt is a powerful motivator. Your loved one may complain about how little you do for them, that you never come to see them, that people are stealing from them when you’re not around, and that — in general — you must not love them to treat them so badly. OK, that hurts. But, step back for a minute. What is he or she trying to say to you? The intended message might simply be, ‘Hey, I’m lonely,’ or ‘Do you still love me?’ Walk into it. Never deny their reality. Acknowledge what you think they might be feeling, and ask questions or soothe without being patronizing. Agree with them…’it must be awful to feel that way. What can I do to help?’ No excuses, no guilt…just understanding. Stay detached, don’t reflect over-concern, and don’t buy into the blame game. At some point, preferably sooner rather than later, you’ll have to make the role reversal. He may be your Dad and she may be your Mom, but you have to become the parent because the bottom line is that they cannot make sound decisions about their care any longer.”
“Finally, one of the most reassuring things you can do is to banish your inhibitions and give your loved one a hug….a great big, full body hug that can heal. Alzheimer’s victims can actually be comforted by doing the comforting. They will often cuddle into a hug and will, by their own body language, let you know the level of touch they need and want. You just have to be ‘tuned in’ so you can receive the message. A quick hug with a few sharp pats on the back or shoulder will be seen as rejection — like you can’t wait to get away — and rapid patting and thumping their back is patronizing.”
“As the child or loved one of an Alzheimer’s patient,” she said in closing, “we become the mirror in which they see their world. They may refuse to look in a real mirror — because they no longer recognize the person who looks back at them — but they search for confirmation in us that they are loved.”
The Realities of Alzheimer’s Disease…
It has only been in the last 20 years or so that people have recognized the term Alzheimer’s Disease. Today, it affects an estimated 4 million of America’s senior citizens and has become one of the most dreaded aspects of aging. The disease — first described by a German physician, Alois Alzheimer, in 1907 — affects men and women almost equally, and shows no preference for race, social status or ethnic background.
Alzheimer’s Disease (AD) is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking ability and behavior. It is the fourth leading cause of death in adults (after heart disease, cancer and stroke). AD usually has a gradual onset with noticeable symptoms covering four to eight years. Problems remembering recent events and difficulty performing familiar tasks are early symptoms. A person with Alzheimer’s may also experience confusion, personality and behavior changes, impaired judgment, and difficulty finding words, finishing thoughts or following directions. Each case is different and how quickly these changes occur will vary from person to person. AD eventually will leave its victims totally unable to care for themselves.
With the increased awareness of Alzheimer’s, many “seasoned citizens” are worrying unnecessarily when they misplace their keys or forget someone’s name. Everyone has memory lapses from time to time, and most people don’t assign too much importance to being forgetful. It is so common that there’s even a term for it: age-associated memory impairment (AAMI) is used to describe the minor memory difficulties that come with age but are neither progressive nor disabling. This type of “forgetfulness” is most likely to occur when the person is under pressure, and usually disappears along with whatever causes the stress.
Years ago, seniors who were chronically forgetful and had difficulties caring for themselves were said to be “senile” — a normal part of aging. Today, the same symptoms are called “dementia.” Alzheimer’s is the leading cause of dementia in the older population. Research shows that people with AD tend to accumulate abnormal “clumps” of nerves along with tangled bundles of fibers in their brains, and lose nerve cells in the brain’s critical memory centers. Medical professionals stress that when memory loss interferes with the activities of daily living, it is NOT normal and is more likely to be the result of disease instead of aging.
How can you tell the difference between Alzheimer’s and AAMI? The simple answer is that one is progressive while the other (AAMI) may remain unchanged for years. People with AAMI can often learn to cope with their memory lapses by using notes and reminders. With Alzheimer’s however, basic coping strategies aren’t successful in recapturing a failing memory. The complex answer is that there is no single clinical test to confirm AD. A complete physical, psychiatric and neurologic examination by a physician experienced in the diagnosis of dementia disorders is the first step. This exam might include the taking of a detailed medical history, a mental status test, laboratory studies (blood and urine), an electrocardiogram (ECG) and perhaps a CAT scan, an EEG (brain wave test) or a spinal fluid study to rule out a treatable illness as the cause for the dementia.
The exact cause of Alzheimer’s is still not known, but medical researchers are closing in on it. Studies are investigating such possibilities as genetic predisposition, a slow virus or other infectious environmental toxins such as aluminum, and immunologic changes. In 1993, a collaborative research team discovered the first gene for late-onset AD and, in 1997, this same team reported finding another gene that is likely to account for the genetic component of the disorder in up to 15 percent of those with the late-onset form. While there are no known treatments or medications which will cure the disease, research promises the potential for delaying its onset and suggests new approaches for working with AD patients.
Many people associate AD with a shortened lifespan, but the slow progressive nature of Alzheimer’s often means that the person with the disease will live for years after the diagnosis is made. The disease can ultimately have a negative impact on its victim’s resistance to infections such as pneumonia, which can be fatal. In many cases, people don’t die of AD, but of other chronic illnesses that affect them.