This article first appeared in the St. Louis Beacon, March 4, 2011 - Susan Rava's account of her and her husband John's parents' serial affliction with Alzheimer's disease strikes a reader with affecting and occasionally numbing force.
"Swimming Solo, A Daughter's Memoir of Her Parents, His Parents and Alzheimer's Disease" published by Plateau Books, traces the mental and physical disintegration of four men and women, active, responsible members of the community, beloved of their children and grandchildren.
Each was gifted. Each in his or her own way contributed vigor and substance to the life of the community. Simultaneously, they stood solidly as pillars of the richly textured metaphorical architecture of the lives of their similarly gifted offspring and their families.
The struggle a reader - this reader anyhow -- has with the book is when he or she finds evident strains of similarity with any of the lives and conditions presented in such high relief. When such a discovery happens, the result may be a despairing "Shoot me now." There is little in the way of redemption or even relief. Memories are golden, but serve as contrast with the darkness inevitably to be. While various members of the book's population behave with inspiring patience, stoicism and goodness, the narrative's unmistakable portents of doom race down the tracks of all their lives like an out of control locomotive.
The story begins at Susan and John Rava's summer place on Lake Michigan. From the house, Susan Rava sees her father-in-law violating a fundamental house rule: no swimming alone. The swim he is taking is not leisurely but instead is what appears to be a beeline across the lake in the direction of Sheboygan. He is lured back to shore, but his arrival is the genesis of a regard for him completely different than what had been before.
(Note: The author chose not to give surnames to the men and women of this book, and some have been given pseudonyms to provide, as Susan Rava said, "a modicum of privacy.")
Before this excursion, Venetian-born Paul had been, like the symbol of the city of his birth and lineage, a lion of a man - brilliant, possessed of a ferocious intellect, movie-star handsome, graceful. He grew up and matured beside the Adriatic, and left when it became evident his homeland would become a bulwark of fascism and no place for Jews. Both he and his wife, Silvia, were reared in palazzos on the Grand Canal, his being next door to the Ca' d'Oro. He brought with him to America, to St. Louis, his worldly leonine presence, and she, "intelligenza" - knowingness -- swathed in luxurious folds of silk.
Then there were her parents, also St. Louisans. They were bred-in-the-bone affluent Americans from way back. Before Alzheimer's gripped them, Dorothy and George were similarly entrenched in cultural affairs and community activities. Some of their political postures, reproductive health issues, for example, were guaranteed to rub many people the wrong way. They traveled widely and fearlessly. Individually they were impressive; together, they were formidable.
And, as a quartet, both couples appear to this reader (who was acquainted with three of the four) to be estimable citizens and enviable parents and grandparents. As described by Susan Rava, the ritual lunches at home in University City on Sundays, and life in Michigan on family holidays, seem washed with the golden light of Titian. Before Alzheimer's, that is.
Dementia levels all who suffer from it. It gradually grinds away at the personality of the affected individual. It afflicts family members who try to deal with the relative stricken with it in reasonable or logical and caringly sympathetic ways.
Often, no good effort goes unpunished. Alzheimer's is pathologically unpredictable in its manifestations, and mind-bogglingly expensive, too, as many a family's financial resources have been leveled by it. There is no predicting what will happen next. A ringing telephone becomes a claxon, rattling nerves, evoking consternation and fear, pushing the button labeled anger. There is no cure.
Fortunately, both sets of parents of the Ravas were covered financially and could afford good care. But the draining off of emotional energy and affection is perhaps more punishing than the specter of going broke. As you discover, reading this book, the abrading force of the disease can and often does affect the emotional and physical health of caregivers.
Silently at first, then out loud, the question, "When will this end?" is asked. The answer, of course, is when someone dies.
Susan and John Rava were as brave as any people I know. There is nothing more challenging that trying to help one demented parent, much less four, one after another. I can commiserate; I have been there, for what seemed at the time to be forever, but only for one.
When I finished this magnificently constructed, gracefully, intelligently written account - which I commend without reservation - I wrote Susan Rava. I told her that as I read her book I felt a chilling draft of recognition, and began to feel as if her story were my story. So many particulars obtained: the sadness; the confusion and frustration; the difficulty of getting answers to questions; the gyre diminishing a carefully invested nest egg; the anger and fury and consequent guilt.
Then I decided: No, I had no claim to ownership of this book. I once again was being selfish and narcissistic. Just because our experiences were similar, hers belonged to her and to her husband John.
And yet, when I replay the book in my mind, it evokes memories that careen along a continuum where the poles are labeled bad and worse. Furthermore, with every groping for the mot juste; every misplacing of the car keys; every forgetting of a birthday; every peering into a kitchen cabinet and wondering, "What the hell am I doing here?" - because of all of that, I have to say, in all honesty and humility, "Swimming Solo" is I.
So, one is left looking for an antidote, not a guarantee dementia won't happen but a reason to resume not just enduring but also being open to a sense of possibility, which is to say, hope.
I asked Susan Rava how she and John remained on their feet, given the intensity and serial quality of their being hammered almost constantly, parent after parent, year after year.
She emailed me a story as an answer:
"Today we were faced with a demanding situation. John's ailing sister has just placed her elderly partner in a nursing home. We knew we had to face the situation squarely, to help out -- long distance and right away.
"How did we do it? We read the paper, drank our coffee and tested ourselves with Will Shortz's NPR puzzle. It was too early to get on the phone to Boston.
"I cut up onions, leek, carrots and celery. I lost myself in the chop-chop of fine dicing. I set a pot of lentil soup to simmer.
"We got on the speaker phone.
"John took notes and made an eye-on-the-ball action list. We agreed to tackle the items after a walk.
"First, we walked our old basset hound. Then John and I walked the neighborhood's dog. A friend's house is just on the market. We agreed about our sadness over their transfer. We heard a bird call we didn't recognize. Our oldest and best friends pulled up to chat from their van window. They commented on the bright colors of our jackets.
" 'We're heralding spring'," John said.
"Back at home we tackled the long distance issues. It's our duty, responsibility. The buck stops with us; John's sister has no other family."
I'd asked Susan how she came by her resilience, her ability not just to roll with the punches but also to spring back.
"My resilience," she wrote, "comes from my husband and family; my friends; ordinary, daily things like walking, cooking, talking. Like a kaleidoscope, multi-colored and ever-shifting, but always carefully patterned, myriad supports held us up: nursing home and medical professionals; housekeepers; several family social workers; old friends; children; the Michigan beach and the University City sidewalks; eight grandchildren who appeared beginning in 1999.
"By nature, I have a positive outlook. I may have narrowed my horizon of hope, yet John and I remain forward-looking in our lives.
"That sometimes means dinner on our patio or a phone call to a grandchild.
"These everyday pieces," she concluded, "compose our hope."