Navigating The Alzheimer's Journey: A Compass For Caregiving (Excerpt)

Copyright 2004 by Health Professions Press, Inc. All rights reserved.
Contents
About the Author . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xiii 1 Care for the Caregiver . . . . . . . . . . . . . . . . . . . . . . . 1 Caregiving Is Challenging . . . . . . . . . . . . . . . . . . . . . . 6 The Essential Job of Caring for Yourself . . . . . . . . . . 16 Caring for Yourself within the Caregiving Relationship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 Caring for Yourself by Growing . . . . . . . . . . . . . . . . 51 2 Living in the Moment . . . . . . . . . . . . . . . . . . . . . . . 59 Moment of Terror and Moments to Be Treasured . . 59 Caregiving Takes Place within a Relationship . . . . . . 70 Finding a Balance . . . . . . . . . . . . . . . . . . . . . . . . . . . 72 Thoughts on Living in the Moment with the Person with Dementia . . . . . . . . . . . . . . . . . 74 Ways for Caregivers to Enter the World of Someone with Dementia . . . . . . . . . . . . . . . . . . . . . . 82 3 Basic Information on Dementia . . . . . . . . . . . . . . 111 Overview of Dementia . . . . . . . . . . . . . . . . . . . . . . 112 Making a Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . 123 The Stages of Alzheimers Disease and Other Dementias . . . . . . . . . . . . . . . . . . . . . . . . . . . 131 The Causes of Alzheimers Disease . . . . . . . . . . . . . 138 How Common Are Alzheimers Disease and Other Dementias? . . . . . . . . . . . . . . . . . . . . . . 148
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Contents
Is There a Cure for Alzheimers Disease and Other Types of Dementia? . . . . . . . . . . . . . . . . 149 Treatment from the Caregiver . . . . . . . . . . . . . . . . . 153 4 Communicating with Someone Who Has Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . 189 Lessons on Listening: The Art of Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . . 189 Nonverbal Communication . . . . . . . . . . . . . . . . . . . 195 Guidelines for Enhancing Spoken Communication with Persons with Dementia . . . . . . . . . . . . . . . . . . 207 Enhancing Communication During Visits . . . . . . . . 230 Telephone Use . . . . . . . . . . . . . . . . . . . . . . . . . . . . 235 5 Creating a Supportive Environment . . . . . . . . . . 239 Searching for Home . . . . . . . . . . . . . . . . . . . . . . . . 239 Environmental Guidelines for Persons with Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 251 Adaptations for Age-Related Changes . . . . . . . . . . . 281 6 Maintaining a Familiar Lifestyle . . . . . . . . . . . . . 293 Understanding the Meaning of Doing . . . . . . . . . 296 Person-Centered Care . . . . . . . . . . . . . . . . . . . . . . . 306 Capturing the Simple Pleasures . . . . . . . . . . . . . . . . 309 Involvement in Familiar Lifestyle Activities . . . . . . 321 Barriers to Participation . . . . . . . . . . . . . . . . . . . . . 324 Ways to Encourage Participation . . . . . . . . . . . . . . 331 Hands to Health: How to Help with Doing . . . . . . 335 Stimulating the Senses . . . . . . . . . . . . . . . . . . . . . . . 346 Using Reminiscence on a Daily Basis . . . . . . . . . . . 354
Contents
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Success with Daily Life Activities . . . . . . . . . . . . 359 Personal Care Activities . . . . . . . . . . . . . . . . . . . . . . 359 Life Care Activities . . . . . . . . . . . . . . . . . . . . . . . . . 411
Using Leisure Activities for the Persons Re-Creation . . . . . . . . . . . . . . . . . . . . 433 General Activity Characteristics . . . . . . . . . . . . . . . 437 Specific Activity Categories . . . . . . . . . . . . . . . . . . . 439
9 Understanding, Preventing, and Responding to Behavioral Symptoms . . . . . . . . . . . . . . . . . . . . . . 465 The Basics on Challenging Behavioral Symptoms . . 466 Preventing Challenges . . . . . . . . . . . . . . . . . . . . . . . 470 Getting Unstuck: Creative Problem Solving . . . . . . 477 Addressing Specific Behavioral Symptoms . . . . . . . 498 10 Care Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . 515 Learning About Dementia . . . . . . . . . . . . . . . . . . . . 518 Taking Care of People . . . . . . . . . . . . . . . . . . . . . . . 532 Taking Care of Practical Matters . . . . . . . . . . . . . . . 552 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 559 Permissions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 568 Appendix A All About Me . . . . . . . . . . . . . . . . . . . . 569 Appendix B Resources . . . . . . . . . . . . . . . . . . . . . . . 633
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Care for the Caregiver
I am still here, trapped beneath this . . . . . . . wet thru wretched brain, through which faint wisps of thoughts, ideas and dreams struggle to break free, while it still defies and defeats my frantic will. If you leave me or love me less, I am forever lost. You have taught me how noble a womans heart can be. If anywhere else, I shall be on the look out for you; Meanwhile look forward feel free rejoice in life cherish the children guard my memory and God bless you. Howard Quarterman
Mrs. Winona Quarterman found this poem in her husbands wallet after he had passed away. It had been folded and refolded many times, but it was clearly in her husbands handwriting. This very personal thanks and testimony means a great deal
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Navigating the Alzheimers Journey
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 May Have Limited Understanding of Dementia and Providing Care for Those Who Have It
Joannes 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 mothers 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 mothers 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 didnt approve, Joanne cleaned up the best that she could and bought some groceries. Joanne also telephoned her mothers doctor to express her concern about Ednas 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 mothers safety to let this go. She contacted a day program and persuaded her mother to go to the programs 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
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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 Alzheimers disease.
Joannes 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 Ednas 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 dont help the caregivers confidence or morale. Caregivers May Have Had a Strained Relationship with the Person Who Has Dementia 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 dont care about the person. Unfortunately,
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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 Alzheimers 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 persons 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 [Alzheimers disease] nor caregiver stress. Autonomy cannot trump everyone elses 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 Marthas 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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Alzheimers Disease and Other Dementias Are Surrounded by Stigma A stigma continues to be attached to Alzheimers disease and other dementias. Again, although education is helping improve this situation, there unfortunately continues to be an uninformed attitude toward dementia and persons who have it. Instead of understanding that it is a brain condition, some people incorrectly consider dementia something that the person or the family can help or should be ashamed of. Tragically, this can lead others to blame persons with dementia for having the symptoms of their condition and believing that if they just tried hard enough, they could do better. This attitude can also make it difficult for caregivers to share concerns and feelings or to get the necessary community support. Caregivers report that they have less contact with some friends and family members after the person develops dementia, as some people dont know how to deal with the situation and stay away. Unfortunately, it is often when people really need extra support that they find out who their true friends are. Please see Chapter 10 for more information on involving others in care. Community understanding of the caregivers experience can be limited. Usually the person with dementia has wellpreserved social skills, looks normal, and can present himor herself very well in brief public appearances. These are wonderful strengths that support the persons self-esteem. However, it can lead others, sometimes even medical professionals, to believe that there is no problem and that the caregiver must be making up all of these problems and changes. This point is shown in the following vignette.
Audrey was one of eight children in a close-knit family. Although the siblings came together for many family social occasions as their parents aged, it was always Audrey who was there to help them out with daily needs.
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After Audreys mother died, her father started to call even more often, and Audrey noticed that his memory was failing. Even though Audrey lived more than an hours drive away, she always made the many trips to town to help with real problems (e.g., bills to pay) or imagined ones (e.g., the belief that all of the groceries were gone). Although Audrey genuinely wanted to do her best, the increasing number of telephone calls and trips were beginning to take their toll on her, and she mentioned her concerns to her brothers and sisters. They said that Audrey must be making things up because they had not had any such calls and their father was as sharp as ever when they talked to him. It was only when Audrey began to redirect some of these calls to her brothers and sisters that they began to realize the kinds of difficulties that their father was having.
Caregivers can become isolated because family and friends find coping with dementia caregiving too difficult, as noted in the following quote by caregiver Sally Callahan (2000). Friends often dont know what to do, how to help, or what to say to their newly donned Alzheimer caregiver. They cant really understand the wearing nature of caregiving. They may feel that their friend has lost perspective and the ability to enjoy life. . . . So people often just drift away. They call less, until they dont call at all. They pull away from the deep, deep pain that has become so much a fact of life for their former friend. (p. 215) Sally Callahan described the all-too-common experience of caregivers of persons with dementia as a world with fewer and fewer social contactsjust when social contacts are really needed. Again, this underscores the necessity for caregivers to care for themselves as well as the value of getting support so that relationships and friendships can maintain a more natural balance.
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The caregiver may need support because the grieving process is ongoing. A caregivers relationship with the person with dementia is going to change; there are going to be losses as the condition progresses. Because dementia progresses over a long period of time, these losses will occur over a long period of time. Many caregivers find that with each realization of loss, the grieving process starts again. Please see this chapters section Take Time to Grieve for more information on this topic. A sense of feeling unappreciated can add to the grief, but remember that the person with dementia often loses the ability to spontaneously show appreciation. In the following passage, Bob shows that he really appreciates the help of his wife, Erika, but he also finds it difficult to accept that he needs this help. Bob explains why he, and certainly others with dementia, may in fact give the person they need the most the hardest time and perhaps the least thanks. Sometimes I give Erika a hard time just to be nasty. I guess its because Id like to be doing things myself instead of having someone telling me to do this or that. Im a little boy now. I have a mommy to take care of me. Its not a very good feeling. My tightest friendship is with Erika. I think were growing more tightly together. I give her a hard time, but Im just teasing. She ignores it. I guess Im letting off steam and frustration. Shes awfully good to put up with me. I wouldnt ever do anything that would be detrimental to Erika. Im lucky to have her. There arent too many Erikas. (Bob, cited in Snyder, 1999, pp. 8586) As a caregiver of someone with dementia, you are working so hard; you especially need a few pats on the back to let you know that what you are doing matters. Unfortunately, the person with dementia may lose the ability to express this appreciation. What you do does make a huge difference and
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the person you are caring for knows this, but he or she just cant express it. See this chapters section Look for Thanks in Ways Other than Words for some other ways that persons with dementia may express appreciation. The caregiver may also need support because the person may blame him or her for memory loss and other problems. As discussed earlier in the chapter, such accusations are very difficult and upsetting. Try to remember that these comments are the result of a damaged brain, that this is not the person who you know and love speaking. It is a person with dementia trying to make sense out of a world that seems to have gone seriously off track, where she or he is losing the ability to cope with even ordinary, daily demands. It must be very frightening and a lot easier to blame someone else than to admit that one simply cannot remember something. Please see Chapter 9 for more information on this challenge. THE ESSENTIAL JOB OF CARING FOR YOURSELF Perhaps feeling that no one else can care for your loved one in exactly the same way, or as well as you can, is justified. Caregiving becomes a way of life, a habit to which you must adjust in order to survive. While it may be difficult to break out of it, and even more difficult to find acceptable coverage, you must for if you dont care for yourself, where will your loved one be? Where will you be? (Callahan, 2000, p. 196) Because you are a caregiver, you are probably used to putting others needs ahead of your own. This is especially true when caring for someone with dementia; the effects of brain damage make it difficult for the person to plan for and take care of his or her own needs. It is natural to respond in a nurturing and caring way. In addition, although you may have previously had
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a mutually supportive relationship (as a spouse, partner, or adult child), dementia makes it difficult for the person to provide the kind of support you are used to or need. This is a tragic loss. Yet, if the relationship before the onset of dementia was not supportive, caregiving may be even more challenging. Please see the section Caregiving Is Challenging for suggestions regarding this especially difficult situation. Caregivers might expect other family members or friends to show extra support or consideration. This is understandable, but if you expect this response, you may be setting yourself up for disappointment. Although some people are expert at offering help and caring support without being asked, most people unfortunately are not.
This leaves one person to look out for you, the caregiverand that is you!
I know that this is very difficult to do; however, it is essential. Just as a car cannot run forever without a refueling stop, you cannot go on forever giving and caring without refueling and reenergizing. The way in which you take care of yourself, refuel, and reenergize is individualit may be just a few minutes working in the garden, a trip to the hairdresser, or a few hours away from caregiving dutiesbut the need is common to all caregivers. Unfortunately, many caregivers neglect this until they find themselves running on empty. When her time as an Alzheimers caregiver was finished, Sally Callahan noted the importance of caring for the caregiver: The lesson of caring for myself has positioned me for a better, more fulfilling and healthy life. There is part of me that is grateful I was forced to learn it. I survived Alzheimer caregiving, and I am learning to live my life more fully and healthily day by day. (2000, p. 226)
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If you find it too difficult to do something just for yourself, stop and imagine how the person that you are caring for will manage if you become too sick or exhausted to carry on. It is a fact that caregivers of persons with dementia have much higher levels of physical health problemsin a Canadian study on health and aging, caregivers had six times the level of other caregivers (Lindsay, 1994b). In addition, 75% of caregivers of persons with dementia are depressed at one time or another. The Canadian study on health and aging reported twice the level of clinical depression for caregivers of persons with dementia as compared with other caregivers. Caregiving is a long journey, and the result of not taking care of yourself may be that you will not be able to finish the journey.
Please take care of the very special person that is you.
The sections that follow offer some suggestions on ways to find support and nurturing for yourself. I wish I could wave a magic wand and tell you how to find the time to do these things; unfortunately, I cant. I can only say that if you make nurturing yourself the priority that it is, you will take time for it. Take a careful look at your day, and make time just for you. Congratulate yourself on making this move toward taking care of yourself; just deciding that you need time for you is a tremendously positive step. There is always a choice, even if the only choice is how you feel or think about something. Try rethinking which tasks are really essential, and ask yourself some hard questions: Do you really need to do this particular household task just now? Can it wait until tomorrow or even later? Will anything disastrous result if the vacuuming or dusting is not done now?

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Navigating The Alzheimer's Journey: A Compass For Caregiving (Excerpt)

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Copyright 2004 by Health Professions Press, Inc. All rights reserved.

Copyright 2004 by Health Professions Press, Inc. All rights reserved.

Copyright 2004 by Health Professions Press, Inc. All rights reserved.

Copyright 2004 by Health Professions Press, Inc. All rights reserved.

Copyright 2004 by Health Professions Press, Inc. All rights reserved.