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$26.95 Stock #29043 (ISBN 978-1-932529-04-3) 688 pages 6” x 9” papercover © 2004  |
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Excerpted from Chapter 1 of Navigating the Alzheimer’s Journey: A Compass for Caregiving, by Carol Bowlby Sifton, B.Sc.OT, O.D.H. Copyright © 2004 by Health Professions Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher. For the person with dementia, Chapter 1: Care for the Caregiver I am still here, trapped beneath this . . . . . . . wet thru wretched brain, Mrs. Winona Quarterman found this poem in her husband’s wallet after he had passed away. It had been folded and refolded many times, but it was clearly in her husband’s handwriting. This very personal thanks and testimony means a great deal to Mrs. Quarterman, and I am deeply grateful that she has allowed me to share it with you in the hopes that it will provide encouragement during the course of caregiving. Unfortunately, the brain damage that accompanies dementia erodes many abilities, often including loss of the ability to express thanks and appreciation — at least in the usual ways. However, know that each and every person with dementia would echo Howard Quarterman’s sentiments, if he or she could. Providing care for someone with dementia is one of the most challenging jobs in the world. I know that you are a special person because you are taking on this job and working at it to the best of your ability. Many caregivers work so hard at taking care of the person with dementia that they forget about taking care of themselves. This book begins with suggestions and reminders about taking care of a very special person—you. If you don’t take care of yourself, it is not likely that anyone else will. If you find it difficult to put yourself first, stop and think about how the person you are caring for would manage if you became ill and couldn’t carry on. This isn’t a scare tactic. It is a fact that caregivers of persons with dementia are at much greater risk of having physical illnesses and depression as well as high levels of stress (Bourgeois, Schulz, & Burgio, 1996; Lindsay, 1994b). Even without meeting you, I know that you are a lifeline for the person with dementia; you know and understand him or her better than anyone else does. Take care of yourself for both of your sakes. Caregiver Sally Callahan put it this way: The first thing caregivers should be told, again and again, until they understand it as something necessary to survive, is that the need to care for themselves must be primary. . . . The long, risky road of Alzheimer’s caregiving often creates multiple victims. Obviously the patient is victim to the disease, but so can the caregiver and his or her family be victims. This needn’t happen. There are ways to be a caregiver for an Alzheimer’s patient that allow the caregiver and his family to remain intact. (2000, p. 190) There are probably many times when you rightly feel that caregiving is a thankless job. The following is but one example. With the same loving, nurturing hands that Jennifer used to draw beauty and life from paper and paint, she helped her husband John care for his brother Ben during the last stages of terminal cancer. The nurturing and gentleness came naturally and easily, but the extra housework was taxing: doing dozens of loads of laundry, making special meals, providing bedside personal care, and hosting friends and family who came to bid farewell. Jennifer’s mother-in-law, Felicia, who also needed care as she struggled to cope with Alzheimer’s disease, was also living with Jennifer and John. Felicia usually spent her days visiting with her dying son and avoiding the many tasks that swirled around in the busy household. One day as Felicia was going down the stairs, she met Jennifer, who was coming to collect still another mountain of laundry that stood between them on the landing. Felicia’s usual gracious smile suddenly snapped to an expression of angry hostility. She seized Jennifer’s tiny, arthritic arms in a vise and angrily spit out, “It is just time that you started to pull your weight around here. I can’t be doing everything — dozens of loads of laundry, meals to get, and Ben to take care of. You better show that you are really part of this family and pitch in.” Jennifer was not only astonished and hurt but also felt a flash of anger at this torrent of insult. Just as Jennifer was about to reply in anger and self-defense, which would only be natural, she caught a fleeting look at Felicia’s sad and confused eyes. Anger turned to empathy as she glimpsed the damaged brain behind those eyes. Jennifer tearfully told Felicia that she was sorry to have failed her duty and that she would try harder. As they shared a hug both women dissolved into tears. Felicia calmed down almost immediately. She thanked Jennifer for her renewed effort, saying that she was sorry to have been so cross but that it was getting to be too much for her to take. I imagine that most of you have stood in Jennifer’s shoes, in one way or another. You’re trying your best, turning yourself inside out and your life upside down to care for someone with dementia, and you end up on the receiving end of angry and false accusations. Perhaps like Jennifer, you’ve been told that you aren’t doing enough (although doing anything more is unimaginable). Maybe you’ve received one or more of numerous other unjust accusations:
These stinging comments cut to the core and not only hurt you but also make you furious. And so they should. These feelings are completely natural and offer no reason for guilt. The challenge is figuring out how to act on these feelings. Although all feelings are valid, not all actions are. If a person with a healthy brain hurls such accusations at you, you may well be justified in returning anger with anger, in standing up for what is true. However, when the person has dementia, it is necessary to count to 10 and step into his or her world to understand where these comments are coming from. In the preceding vignette, a look into Felicia’s eyes gave Jennifer a window into Felicia’s damaged brain. Jennifer realized that this was not the healthy, reasonable person she once knew who was speaking to her in this way. Felicia and others with dementia have damaged brains and are trying to make sense of the world. At times, the faulty brain leads to faulty reasoning and faulty logic. Seeing the pile of laundry may have led Felicia to worry about how she was possibly going to get it all done, which led her to turn in fury on Jennifer, the nearest likely cause. Undoubtedly, the distress of being unable to care for her dying son played a part in Felicia’s feelings of frustration. Jennifer had the grace and the wisdom to realize that this outpouring was coming from a damaged brain, not from genuine ill will and malice. Although the comments were profoundly painful, she chose to act out of understanding and empathy rather than out of the hurt and anger she rightly felt. Reacting with empathy is very hard, but what a difference it makes. Suppose that Jennifer followed her natural instinct to make a heated retort about how hard she was working, in order to set the record straight. It is unlikely that Felicia would understand or believe that this was so, leading both she and Jennifer to become still more heated and angry. This would have been a lose-lose situation because the two women would then become even more upset and frustrated. Instead, Jennifer’s response allowed Felicia to feel that she had made her point, which helped Felicia to calm down. The women restored their relationship and expressed feelings with a hug and some tears. To deal with her own feelings, later that night, Jennifer shared her hurt and insight with her husband John. The damage to the brain is mostly observed as changes in behavior. When a person has a stroke, arthritis, or Parkinson’s disease, the paralyzed hand, the gnarled joints, or the tremor makes it obvious that there is a physical problem. The damage caused by dementia is inside the brain, but what people actually see are changes in behavior. Because the damaged brain cannot be seen, it can appear as if the person is trying to be deliberately aggravating. Although this is certainly not the case, it can nonetheless be frustrating. This is made worse by daily and even hourly fluctuations and by the variability in losses from one skill to another. For instance, the person may charmingly answer the door to a perfect stranger and then urinate in the trash can or put the garbage in the refrigerator. Although it is frustrating, remember that the person is trying her or his best to cope with a very damaged brain. Approximately 80% of the brain damage has already happened by the time that the first symptoms — changes in behavior — appear(Cummings, 1993). "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference" (Reinhold Niebuhr) We are all only human; we cannot always find the strength and the wisdom to be guided by these words. The sheer exhaustion of caregiving makes it even harder to think before acting on feelings, but this behavior is something to strive for. There is more information on this topic later in the chapter. CAREGIVING IS CHALLENGING This is so important to appreciate that it cannot be said often enough: It is not just that you may find caregiving difficult and challenging; it is difficult and challenging, period. Not only that, research has found that providing care for someone with Alzheimer’s disease or another dementia is more difficult than providing care for someone with physical problems alone, such as arthritis (Lindsay, 1994b). Providing care for someone with a damaged brain and limited memory and thinking powers is difficult work. Caregiver Sally Callahan commented, “Caregiving for an Alzheimer’s patient is a long, exhausting, extremely challenging process. Primary caregiving can overwhelm even the strongest and most dedicated people” (2000, p. 190). This is not the same as saying that the person you are caring for makes caregiving difficult. Dementia’s effect on the brain, not the person, causes the challenges. Potential caregivers should not be afraid to voice that fulltime caregiving is not for them. Caring for someone with dementia is difficult and demanding. Recognizing that you are not prepared to give this level of care is not a personal failing; it is a realistic understanding of your particular strengths and weaknesses. There are many different ways to provide care. If you are unable to be a full-time caregiver, you can still make the most essential contribution of providing nurturing support as a visitor or helper. Becoming a caregiver is often gradual and unplanned. The development of dementia is gradual, so spouses, family members, or others may slowly do more for the person without realizing that they are changing roles from companion, spouse, or adult child to caregiver. These changes are especially likely to go unnoticed in the case of a spouse who has always done the household tasks. At some point, however, the line from companion to caregiver is crossed, often when personal care activities become difficult. When this realization comes, caregivers are urged to seek outside advice (see Chapter 10) and begin the assessment and diagnostic process (see Chapter 3). They do not need to travel this road alone. If you have unintentionally become a caregiver, you may feel trapped. Although it can be complicated to get others involved, I urge you to get advice and to carefully consider whether you can or should take on this role. If you are a caregiver, I have no doubt that you are doing the best you can and giving everything you have to this challenging work. Remember that all of your efforts truly make a difference. Although there is presently no cure for Alzheimer’s disease, there is treatment: The caregiver’s care is the best treatment now available for the person with dementia. The ways in which caregivers talk to, care for, and care about — or treat — persons with dementia has an enormous impact on their quality of life and well-being. Caregivers can find it very distressing that despite their best efforts, the person does not “get better.” We need to rethink what is meant by get better. Because dementia is a brain condition for which there is presently no cure, the person cannot get better. However, caregivers can and do help the person to be better — to have better moments, better days, better feelings, and a better quality of life. For example, Jennifer’s understanding and nonconfrontational response helped Felicia to calm down; it provided a treatment for Felicia’s distress and agitation. There is much to learn about the art of caregiving, and this does not come by “one-stop shopping.” As dementia progresses, caregivers will find their roles and duties changing. Caregiving is a journey, not a destination; caregiving is a process, not a state of being. One of the biggest changes is the move from care at home, which involves primarily hands on caregiving, to full- or part-time care in congregate settings, which involves becoming more of an advocate, facilitator, and communicator. You know you are not alone in finding caregiving a challenge. The following discussions share some common challenges that other caregivers of persons with dementia have reported (Bourgeois et al., 1996; Lindsay, 1994b). For example, there is no recipe or straightforward method for providing care. “If you have seen one person with dementia you have seen one person with dementia” is commonly mentioned in dementia care settings. Although the brain damage caused by dementia can be described in general terms that provide some guidance, dementia is manifested quite differently from person to person. There is also great variability in the same person between different activities and from day to day and hour to hour, as is illustrated in the following story. One weekend, when my mother-in-law, Alice, lived in her own, nearby apartment, there was a plumbing crisis. The kitchen drain was plugged and water was running all over the kitchen. It was obvious that grease and other unsuitable materials had been poured down the drain. Because of her nursing background, Alice almost always followed written orders. Thus, her son and I posted a big notice above the sink: DO NOT PUT GREASE DOWN THE SINK. This worked marvelously well, and no grease was put down the drain. Unfortunately, neither was anything else, as Alice would not allow anyone to put anything, including the dishwater, down the sink! The system, which had worked so well for turning on the television and other tasks, wasn’t such a raging success this time. A caregiver’s creativity is always on call. A caregiver is the on-the-spot problem solver. I hope that the general guidelines and suggestions presented throughout this book help you meet this challenge. Another challenging aspect of caregiving is finding someone to relieve you. Caregivers need and want breaks. Paid caregivers, such as home-care helpers, may not have the training or special skills needed to meet the unique challenges of caring for someone with dementia. Although this situation is improving and there are indeed many skilled paid caregivers, there is no guarantee. Some family caregivers report that when they cannot find a paid caregiver who can provide the special care that their loved one needs, it can seem easier not to take the break. Chapter 10 provides suggestions for dealing with this challenge. Doctors and Other Professionals Joanne’s mom, Edna, had always been reclusive and protected her privacy at her old farmhouse on an isolated back road. She could be cranky with visitors, family or otherwise, and preferred her solitary life with her two companions: her overly energetic terrier, Scruffy, and her cigarettes. Joanne had long accepted her mother’s choice and had decided to keep in touch by telephone. However, when she took her mother home from a short hospital stay, Joanne was concerned at what she found. The house was not in order, as it usually was. In fact, it was in total disarray. There were cigarette butts everywhere, with burn marks in the carpet and on her mother’s clothes. Scruffy obviously had total run of the house, including for bathroom functions. There was very little edible food; most of it was spoiled. Although Edna didn’t approve, Joanne cleaned up the best that she could and bought some groceries.
Joanne also telephoned her mother’s doctor to express her concern about Edna’s deterioration. The doctor maintained that nothing was wrong, that this behavior was just an effect of old age in a person who had always been eccentric. After all, Edna had been able to tell him the date and other information while she was in the hospital.
Joanne was too concerned about her mother’s safety to let this go. She contacted a day program and persuaded her mother to go to the program’s office for an assessment. Edna reluctantly agreed to make a few visits “just to try it out” and to keep Joanne quiet. At the program, Edna kept to herself and was coolly pleasant. After Edna had been attending for several weeks, staff members were surprised when she remarked that she had really missed them the week before, when she was unable to attend due to a snowstorm. Edna gradually became more open with staff and they were able to put some home supports in place. The staff members were also able to arrange for an assessment by a geriatrician, who diagnosed Edna with probable Alzheimer’s disease. Joanne’s concerns were well founded. To have her concerns addressed, she had to endure the anger of her mother (and even other family members) as well as the dismissal of her concerns by Edna’s doctor. It had been a difficult process. Like Joanne, some caregivers find that dementia is not well understood by many health care professionals. This often means that the caregiver has to be the one to provide information and to advocate, not only for him- or herself but also for the person with dementia. Many caregivers find this taxing, especially because this requires assertiveness skills that differ from caregiving skills such as understanding and empathy. Increased public awareness and education for staff are helping to get the message out, but, unfortunately, health care professionals still commonly tell caregivers that nothing can help their situation. This is not true, as you probably already know or will learn from this book and other resources. However, such statements don’t help the caregiver’s confidence or morale. Caregivers May Have Had a Strained Caregiving becomes especially challenging when the previous relationship was difficult. Nora Keating (1997) described this situation very well by saying that it is difficult to care for a person when you don’t care about the person. Unfortunately, there are no right answers to this dilemma. If you find yourself in this situation, please seek a skilled counselor to help you work through your feelings and find a solution. Check the yellow pages for the local Alzheimer’s Association (in the United States) or Alzheimer Society (in Canada), which should be able to recommend a counselor or another agency to help you. In some cases, the challenge of living with dementia enables both parties to come to terms with their past or at least to put past grievances behind them. This may occur through counseling and/or result from the emotional softening that sometimes comes with dementia. In other cases, the caregiver is able to work through past feelings independently or at least put them aside. In still other cases, the relationship history is so painful that the best response is to involve others in the person’s care. Remember that neither you nor the person with dementia benefits from adding to past difficulties the challenging situation of providing care for someone with dementia. Martha Holstein advised, We can ignore neither the autonomy of the person with AD [Alzheimer’s disease] nor caregiver stress. Autonomy cannot trump everyone else’s needs. Autonomy and stress must be viewed through a single lens. While a loving caregiver feels stress from witnessing the decline of a loved parent, the social emphasis placed on autonomy exacerbates that stress. One can almost never do enough. (2001, p. 60) The last line of Martha’s advice is critical for caregivers to hear: “One can almost never do enough.” In the end, no one will benefit from a caregiving situation in which the caregiver is reluctant and resentful.
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