From 2005 until her death in January 2011, my mother declined rapidly into Alzheimer's Syndrome. For her last three years, Mom was here in Jacksonville, first in assisted living and then skilled nursing care. (See Walhydra's Porch for more of the story.)This past Christmas, my step-mother gave me a book—at just the right time for me to revisit those memories with seasoned, gentle grief and humor.
When I first saw the cover I was skeptical. "Oh, no," I thought. "Another of those cutesy, sentimental, inspirational animal books."
Ever noticed how book covers of this genre tend to have a common graphic style, just as romance novels do. (BTW, check out Smart Bitches, Trashy Books for some wickedly brilliant reviews of that genre.)
In any case, I changed my expectations at once when I started to read.
On the surface the book is about Oscar, a cat at Steere House Nursing and Rehabilitation Center who roams the rooms of this end-stage dementia facility, keeping residents and their families company, and—here's the mystery—curling up on the bed of any resident who is going to die that day and accompanying them in their last hours.
A curiosity, of course. Yet author David Dosa, Steere House's geriatric specialist, actually uses his "investigation" of Oscar as a story-telling vehicle for a gentle but through introduction to the whole realm of medical and emotional issues which challenge dementia patients and their family and professional caretakers.
Dosa writes with a compassionate yet matter-of-fact, unsentimental voice. Narrating the process of interviewing survivors of residents whom Oscar had comforted, he discloses how he matured in his own efforts to humanize geriatric care for dementia patients.
Near the end, Dosa quotes a medical lecturer who warns her students:
It's about function.... In medicine, doctors often make the mistake of pursuing diagnoses.... Patients like to know what's causing their discomfort or their disability.... In the end, though, it's more about the discomfort or the disability than the name or label....Here's the passage which resonated most for me and my spouse Jim, since it came so close to our own experience of caring for Mom. Dosa visits Annette and Rita, sisters who shepherded first their father and then their mother through dementia over the course of ten years. They tell him about the last year of their mother's life.
People care mostly about whether a disease will change the way they live. Will I die from my disease? Will I be able to walk or care for myself? Will I be able to care for my husband, wife, or children? Will it hurt? This is what patients care about most. (144-45)
"Sometimes we'd be sitting in her room and she would ask about my father [after he died]." Rita smiled wryly. "We would tell her that our father was answering the telephone and would be back when he was done."This rings so true.
"Eventually you just become good at misdirection," Annette said. "I know I did."
"The little things you do," Rita said with a small laugh. They didn't sound so little to me.
"Did you ever feel guilty about—?"
"About lying?" Rita jumped in.
Annette shook her head emphatically. "We considered it playacting. You have to learn to play a role and distract the person with memory impairment." She smiled, then added, "We could never bring our mother back to our reality. We had to go to hers."
So...a long, long set-up for the story I said I was going to tell.
I'm sitting in "Tenbucks" one morning before work, reading Dosa's book. A woman about my age approaches me while she's waiting for her drink and asks me if it's a good book.
"I've seen reviews," she says, " but I wasn't too sure about it."
I tell her a bit of what I've told you, that it's not just a " cutesy, sentimental book" but, rather, a plain-spoken, compassionate story of dementia. I tell her about my stepmother giving me the book in honor of my mother's Alzheimer's death.
"Oh, I'm sorry. I think my husband is in the early stages, and I wondered if I should read this."
I assured her that the book was worth reading, that it covered both the hurts and joys of the experience in a helpful way.
"Thanks you," she said.
So...now I'm doing readers advisory "on the street."
And so it is.
Blessèd Be,
Michael
1 comment:
It's always tricky with senile dementia. At first my father who spent the last three years of his life with me accepted our telling him that were no horses in the neighborhood garages or that all the chores were done. One child finally said to him, "Grandpa, all the calves have been fed." This was accepted until one evening my dad screwed up his face and declared there was something wrong with all of us because no one was leaving the house! I learned then that lucidity comes and goes, and that maintaining dignity and honesty was more important to this Quaker man than temporary comfort or quickly forgotten truths.
We fatigued caretakers do lose perspective and patience with the others in our lives, but the disconnected have the spirit within that in some unknown way, needs us to function with integrity--at lease Daddy did.
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