Saturday, February 19, 2011

SWIMMING SOLO: A Daughter’s Memoir Of Her Parents, His Parents, and Alzheimer’s Disease…

Over five million people in the U.S. have been diagnosed with Alzheimer’s disease, and the costs for treating the disease exceed $6 million, according to David Perimutter, M.D. These figures alone are daunting to seniors approaching their last decades of life, but the emotional costs to family members of Alzheimer’s patients are incalculable.

Our good friends, Henry and Kathy Hamman, who own an independent press called Plateau Books in Sewanee, Tennessee, have just published a book about the costs of Alzheimer’s to family members entitled Swimming Solo by Susan Rava. It’s a memoir written by a woman who endured fourteen years as a caregiver for both her and her husband’s parents when they succumbed to Alzheimer’s. Rava’s memoir records all the complexities of caregiving for parents with dementia, and the writing conveys her journey in a poignant style that combines the memories of better times within the family constellation and the challenges of deteriorating life quality for the four parents.

One of the glimpses into the life of the author’s father is a humorous passage centering on a beach scene:

“…I pictured a long-ago evening toward sunset. We had gathered on the beach, instructions having traveled along the boardwalk to bring marshmallows and long forks for the beach fire after the parade. Will had found an old flag in the closet under the front stairs of our cottage. Dad rolled up the cuffs of his khakis, pulled his white tennis hat down against the low sun, and called us together…Except for Dad, we were a barefooted, ragtag group that never stayed long in formation, Dad would compose the chant as we walked: ‘Here we are, all together, all our family, marching along, marching along, marching along on the beach in Pentwater…’”
This scene attracted unwanted attention to a family parade, but it continued as a family activity for many years, much to the older children’s chagrin. It was a powerful passage about the close-knit relationships among family members, which makes the retelling of the family’s former life even more poignant.

Another scene that emphasizes the depression that often afflicts victims of Alzheimer’s takes place after the author has begun receiving bizarre phone calls from her father:

“I’m old and you need to help me by letting me go home. Can’t you organize it so I can go home?” “Uh-huh,” I said. “About one hundred people in the USA tell me I’m home,” my dad said. “But everyone else knows that I’m not. Why don’t you understand? You’re not very humane or kind.” “Where do you mean by home?” I asked. “With my mother in heaven.” “You mean your mother who is dead and in heaven?” “Yes, I want to go home to my mother and father and sister in heaven, with all the nice people from Westminster Church, like the Hanfords. Don’t you want to go home to your parents?”
Rava describes her own doubts about taking on the role of primary caregiver in moments of self questioning, yet she and her husband push on with loyalty and resolve to take care of their aging parents. She shares her insights into the downhill world of Alzheimer’s, reinforcing the idea that there is no magic pill for the disease. She also includes valuable information about support systems, nursing homes, assisted living places, finances, and hospice care.

I was impressed with the filial devotion of the author and her tremendous strength in dealing with a devastating disease that strikes vital, intelligent humans and calls for transitions that take less sturdy families under, along with the Alzheimer’s victims. She writes:

“Once in awhile, when called on another ‘mercy mission,’ I found myself crying as I drove to Villa Manor or Silvia’s nursing home. I hated my self-pity. Even though I had chosen a caregiving role for our four parents, I didn’t realize that the process might launch me on the path to old age myself. Along the way, I had missed the grace period – the period of grace when John and I would have been at full capacity mentally, physically, and emotionally, and comfortable in our resources and our children and their futures… Why doesn’t God liberate me for time with my kids and grandkids, whisk me away for hugs and stories from Pooh and diaper genies and soy formula in strange cities where no one knows me and I can bring pure, singleminded, attentive love to these young families?...”
For me, that Job-like cry from Susan Rava is the most powerful passage in Swimming Solo.

Susan Rava is a retired lecturer in French language and literature at Washington University in St. Louis. Her work has appeared in the New York Times Book Review and the Christian Science Monitor. Two of her short stories received honorable mentions in the Houghton Mifflin’s Best American Short Stories of 1986 and 1987.

Henry and Kathy Hamman are the publishers of Plateau Books and both are expert editors. Brava to author and publishers for a book that is a significant contribution to ongoing studies about Alzheimer’s disease.
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