Dementia Caregivers Share Their Stories: Book Review

Bernie Cavis, Director of Dementia Product Line Management at Brookdale Senior Living, gave me a copy of Dementia Caregivers Share Their Stories: A Support Group In A Book. I’m fascinated by the stories in this book. The caregiving experiences of the authors, Lynda A. Markut and Anatole Crane, are woven in with those of the twenty-six families interviewed.

In May, I found Lynda browsing the displays at the Wisconsin Conference on Alzheimer’s Disease and Related Disorders. She is Education and Dementia Care Specialist at Family Care Alliance Inc., a not-for-profit geriatric health facility in Illinois, and consults on the specialized care needs of persons with dementia. She also is an adjunct professor at McHenry College, where she teaches Introduction to Gernontology, an upper level psychology course.

Lynda Markut, M.S., L.S.W.

Both of Lynda’s parents had dementia, she says. “My father died twenty-one years ago from a dementia we now think could have been normal pressure hydrocephalus. We weren’t quite as sophisticated as we are now, but given his symptoms, we think that’s probably what he had. My mom had vascular dementia with complications from uncontrolled diabetes.”

She tells me that her co-author was caregiver for his wife Martha for fifteen years. Anatole, a microbiologist, began attending a general support group at Family Alliance shortly after Martha was diagnosed with probable Alzheimer’s at fifty-three. He also helped Lynda start a well-spouse support group.

“Anatole and I would talk about the fact that there was no book out there that told caregivers what families do right,” Lynda says. “And the books were usually written by professionals. We talked about having a support group in a book - families could pick it up at any time and check out what other families might have gone through or had done about a particular situation.”

They brought this idea up in their general support group, and members agreed to be interviewed for the potential book. “As we interviewed the family members, they came to realize all they had done,” she says. “For the first time, they acknowledged their accomplishments. If the book had gone no further, it would have been a success.”

But it did go further. “We had the interviews transcribed; then we started to write. We rewrote it a number of times until we realized the strongest statements would be made by the caregivers themselves. So, we set about letting the caregivers speak, and Anatole and I wrote the transitions.”

Because Lynda had been facilitating support groups for over twenty years, it came naturally to organize the book like one of her groups. “We started with the diagnosis and worked through caregiving issues, emotions, etc., all the way to the terminal stage of the illness,” she says.

The caregivers in the book wryly acknowledge the difficulties of caregiving: family disagreements, their sense of loss, dealing with embarrassing behavior and caregiver burnout. They matter-of-factly chronicle how their lives changed, and what solutions worked for them.

But the essence of the book is the life stories of the twenty-eight families. The stories are vivid and rich with detail – as much about gardening, music and family life as they are about memory loss, personality change and toileting.

Maybe it’s because the people in the book are looking back instead of narrating from the middle of a caregiving crisis. Maybe it’s because they had access to the support services they needed. Maybe they’re just an extraordinary group of people. Whatever the reason, their voices are full of quiet satisfaction and a sense of accomplishment. We can all benefit from their vision of dignity and growth through caregiving.

Comments

[Gail Rae Hudson]

I just read my first caregiver book, about which I've recently been writing over at my site. I'd been avoiding the genre; this one slipped through my radar serendipitously.
I'm intrigued by your description of this book. In response to your last paragraph; through this book and some other unusually vivid caregiving experiences to which I've been privy, I'm finding that the sense of peace seems to be a universal phenomenon, whether the caregiving stint is "easy" (as mine would probably be considered) "medium-hard" (such as Carol O'Dell's) or "unbelieveably hard" (such as SunshineShady's). It has surprised and pleased me to discover this. I don't know, Mona, there's something about being called to compassion that brings things into focus. I think I'll look this book up (after I catch up with myself).

[Gail Rae Hudson]

Just wanted to let you know, I'm in the process of reading this book. I continue to find it intriguing, have already written a little, and been inspired to write a little more, about and by this book. Maybe it's because I'm unfamiliar with all but the early literature. Maybe it's because I guess you could say I'm part of the informal literature, which is important. But this book is melting away my resistance to caregiver literature. Is it me, I wonder, or is this book precisely right in it's presentation as well as it's appearance.

When I surveyed Amazon for "caregiver" + "elderly", I noticed a fair number of books written by people who have worked in the elder care industry. I've made a mental note to look up some of those books, too.

Thus, I regret to say, I haven't yet caught up with you, Mona...I still haven't read the post about chlamydia, about which I'm very curious. I'm afraid it will distract me from the reading I'm doing, now. But, I'll get to it, I promise!