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BOOK REVIEW |
Professor, Heller School for Social Policy and Management Brandeis University Waltham, MA 02454
A Dignified Life—The Best Friends Approach to Alzheimer's Care: A Guide for Family Caregivers, by Virginia Bell and David Troxel, Health Communications, Inc., Deerfield, FL, 2002, 323 pp., $12.95 (paper).
A Guide for Caregivers of People With Alzheimer's or Other Dementias, by Rosette Teitel, New Brunswick, NJ, Rutgers University Press, 2001, 192 pp., $40.00 (cloth), $17.00 (paper).
Alzheimer Solutions: A Personal Guide for Caregivers, by Jim Knittweis and Judith Harch, Lucid Press, Sausalito, CA, 2002, 167 pp., $21.95 (paper).
Love, Honor, & Value: A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving, by Suzanne Geffen Mintz, Capital Books, Inc., Sterling, VA, 2002, 204 pp., $14.95 (paper).
"Can You Go It Alone?" was the title of an essay I wrote for The Gerontologist in 2002 (Callahan, 2002) in which I reviewed four self-help books for caretakers. After telling the stories in each book and listing their strengths and weaknesses, I concluded that caretakers can't do it alone and should seek appropriate help. Each of the books would be an aid to getting started. Many similar books have appeared since then. The four reviewed in this essay are only a small fraction of them. We can expect more as the needs of caretakers and the caretaking experience of book writers expand.
In fact, a search I conducted for "caretaking" on the Amazon.com book site produced 389 titles. The first 80 were almost exclusively directed to consumers. They dealt with the caretaking needs of elders and also of sick children. Conditions covered included dementia, Alzheimer's disease, cancer, spinal cord injury, Parkinson's disease, cerebral palsy, and hospital stays. Topics included critical thinking, planning, humor, recipes for caregiving, and spirituality. Titles tended to stress either the needs of the care receiver or the needs of the caregiver, but I expect the authors discuss both subjects. The books were written by medical/social professionals, persons who had lived the life of a caregiver (sometimes the same professionals as we will see below), professional writers and associations (e.g., the American Medical Association, the Visiting Nurse Association). Amazon.com customers rated most of them with 5 stars on a 1–5 scale.
The works discussed in this essay reflect the categories just described. Rosette Teitel, author of A Guide for Caregivers of People With Alzheimer's or Other Dementias, is a caretaker motivated to write as a result of caring for her husband who was inflicted with vascular dementia. Her volume is a practical, consumer-oriented "handbook" with lists, suggestions, and resource guides. She also includes model documents (e.g., living will, health care proxy) and scheduling forms. She gives sympathetic and practical advice in a chapter describing a year of widowhood.
Jim Knittweis is a professional with caretaking experience. He has a master's degree in gerontology and his co-author Judith Harch is a freelance writer who has edited nursing and medical journals. The preface in their Alzheimer Solutions: A Personal Guide for Caregivers is a moving story by Knittweis of his father's experience with Alzheimer's disease. He communicates facts and feelings in a few pages. The nine chapters include sections on 36 issues. Some topics are the Heimlich maneuver, dehydration, managing anger and aggression, sexual intimacy, and taking away the car keys. The book goes for breadth rather than depth. As a result, it has more sections on medical issues than the others, but has abbreviated discussions of most items. In addition to the usual resource guides, it has a useful glossary.
Suzanne Geffen Mintz, president and co-founder of the National Family Caregivers Association, is married to a man with multiple sclerosis. She briefly relates their story in Love Honor, & Value: A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving. She is honest about a relationship that became more difficult over time and produced a 2-year breakup followed by reconciliation. Unlike many caretaker authors who write about loved ones no longer with them, Suzanne relates to an ongoing and changing married life. Like the other authors she covers many of the usual topics of caregiving, but stresses that she is talking about family caregiving and its family dynamics, not about professional caregiving. The book has appendices containing tip sheets and resource descriptions.
Virginia Bell and David Troxel have contributed A Dignified Life—The Best Friends Approach to Alzheimer's Care: A Guide for Family Caregivers. It focuses on Alzheimer's care and is based on their philosophy that a caregiver should consider her/himself as a "Best Friend" to the person for whom they are caring. A few quotes from their work illuminate their concept of "Best Friend":
Alzheimer's disease changes us all. Because of the associated memory loss and confusion, your mother, father, sister, brother, husband, wife, or partner may no longer know you or understand his or her relationship to you. Many caregivers are confused, frustrated, sad, or even angry about these losses....As a result, your relationship with the person changes whether you like it or not....Adopting a Best Friends approach can help diminish this pain and loss and can have a powerful impact on the person with dementia. When you rethink, or recast, your relationships to individuals with dementia and become a Best Friend to them instead of just a caregiver, the person now feels you are on his or her side....Recasting this relationship to become a Best Friend does not mean taking away love or loving the person with dementia any less. It simply means approaching the relationship differently. (pp. 63–64)
According to Bell and Troxel, the key elements of being a Best Friend are as follows: Friends know each other's personality and history; Friends do things together; Friends communicate; Friends build self-esteem; Friends laugh together often; Friends are equals; and Friends work at the relationship.
The authors expand on these elements with more detail and examples. They hang much of their caregiving advice on the idea of learning the "knack" of caregiving. Additionally, the book has a useful chapter on what is known about the various types of dementia, and includes the expected contacts and resource lists.
I found the notion of Best Friend particularly useful in reconceptualizing a common theme in most publications on caregiving and that is the need to take care of oneself. Many of us have been socialized to believe in service to others, filial piety, and self-sacrifice as important values. These values, often accompanied by love and affection toward the care receiver, may produce confusion, self-neglect, and depression because of unfamiliar caregiving demands. The idea of the Best Friend allows one to set limits on the emotional and time involvement in caring for another. Being someone's Best Friend does not carry with it the expectation that I should jeopardize my health or my income or my peace of mind. There is a limit on what I will do for a friend and that limit should apply to my parents and spouse as well. I think this is especially true in a long-term nonreciprocal relationship where there is mostly give and no take. The autonomous decisions of the care receiver must be balanced by the well-being of the caregiver, although I recognize that realities of the relationship may make this difficult.
How does one explain the plethora of such books coming off the presses? A market niche being filled by capitalistic enterprise? Traumatized authors working off their pain by trying to help others in the same situation? The altruistic gene in action? All or none of these? And, how useful are these varied stories to others? Are there too many stories or not enough?
Clearly the books being produced are of varying quality and usefulness, but it is difficult to predict their helpfulness to particular caregivers. If I were a counselor to caregivers, I would recommend one comprehensive general text that covers all the issues of living with an elder—not only caregiving—and one more condition-specific personalized story with good tips, schedules, and lists.
I once asked an executive of a national orange juice company why the company had so many types of juice available—pulp/no pulp, sweetened/unsweetened, from concentrate/not from concentrate, with calcium/without calcium, mixed with another juice/not mixed. He explained that people had preferences and he wanted to satisfy as many as possible because, ultimately, they were buying orange juice. This analogy fits the caregiver information business.
During my long career in the human services, I frequently have heard from agency heads that the general public knew little of their services and that it was necessary for the service agencies to "educate" the public. Most efforts aimed at "educating" the public did not seem to increase service knowledge very much, nor should one have expected such a result. People are too busy going about their lives to be concerned with the human service industry and its products as part of their general store of knowledge. It is only when something happens that requires human services that they need to know. When people face a new problem they usually try to solve it and a first step is a search for information—from friends, professionals, books and the Internet—to find out what to do next. Human service professionals should be committed to making the search process effective. Like the orange juice executive observed, it is good business to have many varieties of information sources available and the kind of publications discussed here can introduce a help seeker to the world of caregiving.
Reference
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