Dementia Caregivers Share Their Stories: A Support Group in a Book

Dementia Caregivers Share Their Stories: A Support Group in a Book

by Lynda A. Markut, Anatole Crane


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Replete with the powerful words of experienced caregivers, Dementia Caregivers Share Their Stories is an essential guidebook for anyone who must attend to the needs of a loved one suffering from Alzheimer's disease or another form of dementia. In these pages, members of caregivers' support groups - representing twenty-six families and a variety of professions and income levels - speak candidly about the challenges they have faced at every step in the caregiving process, from recognizing early symptoms of dementia to dealing with its advanced stages.

Highlighting the ingenuity and resourcefulness of caregivers, the book brims with inspirational stories, practical advice, and creative approaches to problem-solving. Among the issues addressed are:

Becoming a caregiver, whether for a spouse or parent
Dealing with the personality changes caused by dementia, from anxiety and paranoia to hallucinations and impulsive behavior
Keeping dementia sufferers meaningfully involved in life
Handling the emotions and stresses of caregiving
Seeking help through support groups and other sources, including medical professionals, clergy, and other family members The authors, who have both been caregivers themselves, augment their interviewees' stories with connective commentary and their own personal stories. A useful resource section is included to refer readers to associations and help-lines.

Product Details

ISBN-13: 9780826514806
Publisher: Vanderbilt University Press
Publication date: 06/10/2005
Pages: 288
Sales rank: 934,000
Product dimensions: 6.00(w) x 9.00(h) x (d)

About the Author

Lynda A. Markut is the clinical director at Family Alliance, Inc., a not-for-profit comprehensive social service agency in Woodstock, Illinois. She conducts several support groups and was the caregiver for her parents, who both had vascular dementia.

Anatole Crane, a retired microbiologist, co-facilitates a spouse dementia support group and is president of the board of directors of Family Alliance. For fifteen years, he was the caregiver for his wife, who was diagnosed with Alzheimer's disease.

Read an Excerpt

Dementia Caregivers Share their Stories

A Support Group in a Book

By Lynda A. Markut, Anatole Crane

Vanderbilt University Press

Copyright © 2005 Vanderbilt University Press
All rights reserved.
ISBN: 978-0-8265-9191-3


Early Symptoms and Diagnosis

Usually at this time of the school year, when I come home from work, Martha has changed out of her school clothes, has a load of laundry in the washer, dinner on the stove, and is finishing scoring the tests of the children she worked with today. But lately the scene is different. When I come in, she is sitting at the table in her school clothes. There is no laundry going, nothing on the stove. Piles of crumpled papers surround her on the table and floor on which she has unsuccessfully tried to record and compute test scores. She has been unable to use the charts and do the straightforward computations that she has done for years. She is frustrated, angry, frightened. She shouts; she cries. I help her do the calculations and even rewrite some of the summaries she has struggled with. She calms down somewhat but is still very upset. "What's wrong with me?" she asks. I can't answer because I don't know, but we both know that something is very wrong, and we are afraid.


Four of the most common types of progressive dementia are explained in this chapter: Alzheimer's disease, Pick's disease, Lewy body dementia, and multi-infarct or vascular dementia.

Alzheimer's Disease

Approximately four and a half million Americans have Alzheimer's disease, the leading cause of dementia in older adults. By the middle of this century, fourteen million Americans will be afflicted. The characteristics of Alzheimer's disease are progressive memory loss, disorientation, and confusion. The disease ultimately results in loss of cognitive and physical function and, finally, death. German neurologist Alois Alzheimer was in 1906 the first scientist to describe the set of clinical symptoms that we know as Alzheimer's disease. His patient, a woman in her early fifties, came to him with problems that today we recognize as classic symptoms: memory loss, suspiciousness, trouble finding her way, hoarding behaviors, and the loss of the understanding of meaning of objects. Her condition was progressive, and after four and a half years she entered a stuper and lay in bed in a fetal position. Based on his later autopsy of her brain, Alzheimer described the neurofibrillary tangles and senile plaques that are the hallmarks of Alzheimer's disease.

Lewy Body Disease

The most common cause of dementia after Alzheimer's disease, Lewy body disease is a degenerative dementia that combines the clinical features of Alzheimer's disease (progressive memory problems and difficulties with other areas of cognition) and those of Parkinson's disease (difficulty with walking, rigidity, and tremors). Autopsy of the brain reveals an abnormality (Lewy body) in addition to the plaques and tangles found in Alzheimer's disease.

Vascular Dementia (Multi-infarct Dementia)

Vascular dementia is the result of multiple small strokes, or infarcts in the brain. A stroke—an injury to a blood vessel caused either by a clot or a tearing of the vessel wall—causes bleeding into the brain tissue, an event referred to as a cerebral vascular accident (CVA), which destroys the brain tissue in the immediate vicinity. If the CVA occurs in an area responsible for learning and memory, then symptoms of memory loss and thinking problems become evident. This dementia is not reversible or curable, but if an underlying treatable cause of the strokes, such as hypertension, can be determined, then treating the cause may decrease the risk of future infarcts.

Pick's Disease

Pick's disease, a rare brain disorder, is usually difficult to diagnose. Disturbances in personality, behavior, and orientation may precede and initially be more severe than memory defects. A definite diagnosis can be made only at autopsy.

Early Symptoms

Although the symptoms and progression of progressive dementia vary from one individual to the next, memory loss is almost always one of the first signs of illness.

Other early symptoms may include problems with judgment, word naming, object identification, paranoia, and executive functioning. Since most of the individuals identified are in their middle to later years of life, the early signs are frequently attributed to normal aging. It soon becomes apparent, however, that something else is occurring as the individual struggles to complete tasks that he or she may have done routinely for years, experiences memory loss, and has problems with ordinary activities. When a family member has a progressive dementia, normal, routine activities become difficult, but the full extent of that difficulty is not apparent to the person with the problem.

Bridgette — My Mom lost her car in the supermarket parking lot. She just couldn't find it. A snowy night a few months later, she got lost going home from my house. We received a phone call from a stranger saying she was in front of his house and didn't seem to know where she was. Mom began having difficulty remembering what day it was, what was on TV, so she began to write these things down after consulting with me. We took her to a doctor who ran a battery of tests, which, he reported to Mom, showed nothing. She called me and told me about the doctor's report, saying, "I'm fine. Everything is fine." Then she called me back two minutes later to ask me what day it was. And I thought, You're just fine, Mom, sure you are.

At first, family members, especially spouses, may gloss over problems. A spouse usually takes over and completes whatever the partner is having trouble with, as Bob A. did. As more and more difficulty surfaces, it becomes evident that something is wrong. Bob shares how it was with his wife, Barbara.

Bob A. — We were having a dinner party and we always helped each other. When I came into the kitchen, Barbara was standing at the sink. She wasn't moving and she said, "Everything is all mixed up. I don't know what to do." I kind of sloughed that off, but then we heard from a friend that she had stopped at their house and wanted directions to go downtown, where she had gone many, many times before. She was about six blocks away and didn't know how to get there. Another time she was coming home from a meeting at the local hospital where we both volunteered and couldn't remember the way home. Fortunately, she stopped and asked someone, who directed her. Shortly after that she stopped driving.

In most instances the family member with dementia knows there is a problem. They know something is wrong at the time, but they may forget shortly thereafter. Sunny was eventually able to verbalize her concern to her husband, Bob.

Bob O. — The first thing I noticed was about fourteen years ago on Thanksgiving when we had thirteen or fourteen people at the house and we were preparing dinner. We were about halfway through getting dinner and Sunny said, "I can't do it anymore. I've got to go. You're just going to have to take over." She just went into the living room and sat down. At Christmas the same thing happened. Later we went to visit her aunt, who had advanced Alzheimer's, and when the aunt did not recognize her, Sunny said, "I wonder if I have what my aunt has."

There are times when a family member can verbalize concern the way Sunny did. Many times a change in a family member's health status, like a cold, the flu, or surgery, can cause increased forgetfulness and make symptoms more apparent. When this happens, the family realizes that there is a serious problem.

Jesse — Mother had bypass surgery after she had a heart attack and I think right after that she probably started going downhill. A few years later, I was doing things for her and I didn't even realize it. Prior to the surgery, there were incidents that I had dismissed as signs of normal aging. She forgot things, occasionally burned things while cooking, and she got lost a few times. After the surgery, however, the frequency and severity of the incidents increased to the point that it was obvious there was a serious problem.

Caregivers are challenged to find ways to be watchful and assist the person with dementia without causing embarrassment, because the person doesn't realize the extent of his or her incapacity. Frequently the primary caregiver ends up being the "bad guy." That happened to Norma.

Norma — My mother had always been very neat and clean, but I began to notice that when I went to her house, things didn't look right. I might go over and find that she wasn't dressed in the middle of the day, and she would say she wasn't feeling well. When I went back in a day or two, I would find her not dressed again, and I began to wonder if she was getting dressed at all. Once she told me that she'd gone into her garage, which was attached to the house, and couldn't find her way out. That really frightened me. While she was in the hospital for a skin condition, I went to her house to clean out her refrigerator and found very little to discard. She apparently had not been buying groceries. She became disoriented in the hospital, and I decided to bring her home to my house until she recovered.

Five years later, she is still living with me. She tells me, "You're the one that's driving me crazy. When I lived by myself, I didn't have these problems." And she didn't. If she wore the same thing for five or six days, she didn't know it and it was fine. Nobody told her, so she had no problems.

Caregiving can become a double-edged sword. As was the case for Norma and many other caregivers, the family member providing the care becomes the problem as well as the solution. We become part of the problem because when we care for people daily, we'd like them to look, eat, and dress as normally as possible, not realizing that our expectations sometimes cause us to be unrealistic about their abilities. What would be the problem with them wearing the same clothes for a few days? Or what would be so bad about wearing two tops?

Caregivers want their family members to look good, but when they have a progressive dementia, their brain is "broken" and, as Concetta Forchetti (MD, Ph.D., and medical director of Alexian Brother's Memory Disorder Clinic) says, they are suffering from "brain failure." They are not able to perform their routine tasks or realize that wearing two tops is not appropriate.

In the early stages, the person with dementia does not look disabled. Perhaps we caregivers could benefit from some visual cue to reduce our expectations, for example, imagining that our family members who have progressive dementia have a Band-Aid across their foreheads. If we can do that, we are less frustrated by our family member's reduced ability to communicate and function. We wouldn't expect a person with a broken arm in a cast to carry a bucket of water, and yet many times we continue to expect the family member with a broken brain to still perform routine activities. Persons with dementia retain many of their characteristics, but we need to understand their limitations.

Caregivers are part of the solution because we provide care in areas where our family members can no longer care for themselves.

In some instances, the person with the illness can be the first one in the family to realize that there is a problem. This isn't usually the case, but it happened that way with Bernice and Joe.

Bernice — Joe noticed his problems before I did. I just thought we're getting a little older and we forget things. Joe had always been very good at directions when we were traveling and now he was getting lost, making wrong turns. He was also having trouble at work. He was chief mechanical engineer and now he was asking his group to help him with everyday problems. He realized he was having problems and it was very embarrassing to him. He would come home and say, "I just don't know what to do anymore."

When persons with dementia admit that they have a problem, they give us "permission" to help. Caregivers still need guidance, but caregiving becomes much easier when we have that permission.

In addition to loss of memory, symptoms such as hallucinations frequently occur in people with Alzheimer's disease. Usually these appear somewhat later in the illness, but at times they can be early symptoms of a serious problem. Lila's hallucinations were early indications to Nancy of her mother's difficulties.

Nancy — Mom answered the door and told me that Sally Jesse Raphael was in her living room with her husband and daughter. I knew nothing to this point, because she wasn't living near me and no one had told me about any problems. Mom said she had gone into the kitchen to make coffee for her "guests." She forgot how to make coffee and called her sister to ask how to make coffee and when we went into the living room the "company" had gone.

Paranoia is another symptom frequently seen in Alzheimer's disease or Lewy body dementia. It is one of the first signs that Lois noticed in Bud that led to his diagnosis.

Lois — I started to notice that Bud was becoming paranoid. He was starting to have nightmares and through the nightmares and the paranoia he fell down and broke his hip. That seemed to give him a sense of defenselessness for many years. He was retired and we were moving out of the state and he thought that once we got settled his depression and paranoia would go away, but it just got worse. He constantly believed that someone was after him to harm him. He would also hallucinate. He would see children or animals in the back yard that weren't there. Many times he would say, "I know you can't see this, but I can."

Bud had Lewy body dementia. In this illness there is memory loss, but the progression is different than it is in Alzheimer's disease. The guide in either case is that the reality of the situation is "their reality," that is, it is real for the person with the disease.

Some people suffering from Alzheimer's disease display marked changes in temperament or behavior, while others don't change much even as the illness progresses. As we will see, Jayne and Alice underwent some marked changes in personality. Arne and Russ, the spouses providing care for them, were surprised at first by the changes they observed in their wives but later came to realize the changes were the result of the illness.

Arne — Jayne was always very agreeable and pleasant, but now she began to argue about all kinds of things—where to go for dinner or what to do for an evening. Her language also changed. Jayne never swore before, but now she would come out like a truck driver. The first time she called me an SOB I told her, "Don't you ever say that to me again," because I still didn't realize the problem. As the illness has gone on, I realize it's the illness talking and I don't get offended by it anymore. Her language still is bad at times, but it doesn't bother me anymore.

With progressive dementia, people lose what can be referred to as their "social filter." Our social filter prevents us from making comments that are inappropriate in most social settings, even though those comments or thoughts come to mind. When a person has dementia, thoughts that are triggered in the brain frequently come out the mouth without being diluted by a filter. This can be embarrassing, especially early in the illness when we aren't aware of the full extent of the problem. Russ talks about his confusion in the early stages of his wife Alice's illness.

Russ — The first thing that happened was that Alice was forgetting to write checks to pay bills but would put the bill back in the return envelope and send it back without the check. Then her temperament started to change. She was always quite evenly tempered, but now she would get mad at the slightest things, which wasn't like her at all. I couldn't grasp what was happening.

As time went on, that got worse. She would get mad at me if I didn't agree with her. She would get furious and say I was sticking up for my family and not taking her side. At night after we went to bed and the lights were out, she'd say, "Well, what are we going to do about it?" And I didn't know what we were talking about. It was usually something about my family that didn't make any sense at all.

Russ knew that Alice was changing, and Alice was also aware of the loss of some of her capabilities.

Russ — One night after playing bridge with a group we played with regularly, Alice said, "We've got to quit playing bridge." When I said I didn't want to quit because this was a nice group of people and we always enjoyed being with them, she said, "I've got to quit. I can't remember the cards."

It helps to observe what types of situation cause frustration to the person with dementia, then limit or try to avoid them. Maggie at first passed off the signs of Alzheimer's disease as stress, but the changes in her mother Louise's personality and capabilities persisted.

Maggie — Mom had just come back from California after taking care of her sister, who had Alzheimer's, for five years. I noticed that when people asked her address and telephone number, she couldn't remember them. At first I thought that was stress, because she really appeared emotionally exhausted. So I got her a brass luggage tag and a case with her name, address, and phone number on it and put it on her key ring so she could refer to it when asked.


Excerpted from Dementia Caregivers Share their Stories by Lynda A. Markut, Anatole Crane. Copyright © 2005 Vanderbilt University Press. Excerpted by permission of Vanderbilt University Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Table of Contents

Early Symptoms and Diagnosis
Who Cares and How They Do It
The Challenge of Behavior Changes
Maintaining Meaningful Involvement in Life
The Emotions of Caregiving
Transitions: Taking the Next Step
Holidays and Other Celebrations
Coping with Losses
Caregiver Stress
Meaningful Connections
Terminal Stage: Moving Forward
Growth Through Caring
Messages to Caregivers
Resources for Caregivers

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