From March 23, 2003 issue The Anguish of Alzheimer's
By Floyd Skloot
Floyd Skloot is the author of "In the Shadow of Memory," a book of personal essays about living with brain damage
Two novelists turn to memoirs to describe a parent's ultimate
Death in Slow Motion: My Mother's Descent Into
By Eleanor Cooney
HarperCollins, 251 pages, $23.95
The Story of My Father: A Memoir
By Sue Miller
Knopf, 174 pages, $22.50
Celebrities give a public dimension to the intimate horror of Alzheimer's disease. Knowing that Ronald Reagan, Charlton Heston or Iris Murdoch are among its victims forces us to accept that anyone--national leaders, cultural icons, great intellectuals--can suffer the devastation of Alzheimer's. But unless it happens to spouses, parents or friends, we're spared the private dimension. We can retain an innocence about details.
Novelist Eleanor Cooney's memoir, "Death in Slow Motion: My Mother's Descent Into Alzheimer's," brings us deep inside the personal anguish. It's too fierce and unsparing, too honest and outraged, to be read complacently. Funny, crazed, it's a close survey of the disease's territory.
Cooney's mother, novelist Mary Durant, was 75 and living alone in her Connecticut home when "[t]he first shadows fell." There were "blanks in her short-term [memory] retention and disquietingly uncharacteristic lapses in judgment." Durant "struggled to hide it for a couple of years," but then came "delusions and disorientation and . . . some long-term memory loss." She was duped by a flim-flam artist who told her she'd won a sweepstakes. She created a scene at a toll booth, lost track of her car. This elegant, creative, accomplished woman was being transformed, and the truth could no longer be ignored. Cooney, together with her live-in lover, Mitch, decided to take Durant to live with them in California.
In outline, it's a familiar story now. But Cooney intends her book to be radically different from the standard Alzheimer's account. She's not dispassionate, she's not going to elucidate the neurology or psychology or social-policy issues, and she won't gloss over the reality even if it makes her look bad. "Arguing with a memory-damaged person is, without a doubt, one of the meanest, stupidest things you can do. Like challenging a paraplegic to a footrace."
We see Durant's unpredictable, sometimes explosive behavior. We listen to her endless repetitions, which Cooney calls "M.C. Escher perpetual staircase dialogues," in which the same few questions are asked and answered in an ongoing loop. Durant spews disorder everywhere; she's too volatile to be managed by anyone other than Cooney; her complaints are genuine and cannot be fixed. Durant becomes dependent and childlike as Cooney becomes responsible and parental, and neither handles the role reversal well.
From the first, it's clear things will not go smoothly. Cooney knows this: "[B]y the time it's necessary to move a person out of her home because she can't take care of herself anymore it's already too late for good sound reasons to make any sense to her."
As Cooney, Mitch and her brother pack Durant's belongings, separating what will remain until the house sells from what will go with them to California, she assures her mother they'll have fun together out west. Durant agrees, then announces she's decided to postpone the move, then screams " 'I WON'T GO!!' " Cooney knows that the mother she adores is "on another planet." The semi-emptied, rearranged family home with its "peculiar blank spaces" had turned into "a visible metaphor of my mother's mind."
Everyone connected with the disease is altered. "It was," Cooney writes, "a gradual Invasion of the Body Snatchers. This person looked like my mother, dressed like my mother, sounded like my mother, but she was becoming everything that had been anathema to her: Intrusive. Complaining. Hypochondriacal." Cooney hardly recognizes herself either: "I felt hard and mean and full of sorrow all at once."
For a year-and-a-half, Cooney and Mitch try to make it work. They use all sorts of arrangements: sharing a small home with Durant, installing her in an apartment nearby, moving to a place where she can live in a small cottage behind their home. She is riddled with guilt, feeling "as if I were putting her out on an ice floe."
As Durant deteriorates, the difficulty of caring for her intensifies. The due date for Cooney's novel passes, her relationship with Mitch sags under the strain, her drinking escalates and the situation moves toward desperation. "I've lost her," Cooney tells us, "but I'm still responsible for her living, breathing body and the ghosts in her head."
Caring for Durant finally becomes too much. The nursing homes Cooney finds to accommodate her mother fail to work out until, finally, one is found that proves capable of managing Durant, and there is a happy ending, of sorts.
Although "Death in Slow Motion" is grueling, it's also stunning and eloquent in its wounded passion. Cooney leavens the present with charming flashbacks to her mother's life story: her marriages, including a final happy one to Mike, the younger man whose death may have accelerated Durant's deterioration; her writing career, which flourished in midlife and produced a widely praised novel and several nonfiction books written with her beloved late husband; her active social life. Cooney makes her mother, Mike and Mitch come to vivid life before our eyes, makes us care for them even as she refuses to overlook everyone's limitations, especially her own.
Coming to Sue Miller's "The Story of My Father" after reading Cooney's book is like entering a flotation tank after emerging from an extended tumble in crashing surf. Far more poised and temperate, Miller's memoir is a composed, well-considered account of her father's decline and death from Alzheimer's, written by one of our better novelists of domestic life.
James Nichols, Miller's father, was a church historian and academic dean at Princeton Theological Seminary. A widower, calm and distant, he came from a family about whom Miller says, "there was in all of them a sense, finally, of deep reserve." Nichols was detached and diffident, "patient and respectful," a man who loved his children but was seldom demonstrative. In fact, his abstractedness made it difficult for Miller or her siblings to recognize the early symptoms of Alzheimer's. Scholar and historian, a man opposed to violence and war, Nichols is transformed into a forgetful, belligerent figure lost in hallucinations.
Miller devotes ample space in this brief memoir to Nichols' long life story, his marriage to an emotional and histrionic woman ("She was excessive in all she did"), his achievements. But she has trouble making him a fully rounded presence because his character was essentially flat. A rare memorable moment occurs when the teenage Miller tries to teach her father to jitterbug in the living room:
"I took the lead, spinning him out, yanking him around to Jerry Lee Lewis, but he was hopeless. Game but hopeless. And in the end, we were laughing too hard to go on anyway."
He remains a passive presence here, too; the main action is Miller's, but at least we get to see Nichols laugh.
Miller also devotes space to a detailed, useful summary of the science of Alzheimer's. She relates the information to her father's behavior, often speaking of him the way Oliver Sacks speaks of a case:
"He began to have trouble, too, with ordinary nouns, and his speech became more and more riddled with substitutions. And of course it turns out there's a place in the brain specific to nouns, to naming things. Typically, when this region is damaged, the person sounds much the same, his rhythms of speech are intact, but he uses pronouns instead of nouns, and generic words or categories instead of instances."
Exploration of the science allows Miller to reach an understanding about what happened to her father. "It wasn't owing to his character or depth of attachment to people that Dad remembered us. It was what the disease spared while it destroyed something else." Her research (or rather, as she makes clear, the research performed for her by an assistant) also enables her to make fine, helpful distinctions. "It was his brain," Miller can say, "not a theoretical construct in his mind, that was being destroyed."
A key reason for the differences between these books is that Miller wasn't her father's primary caregiver. He didn't live with her; for a time he lived alone in his New Jersey home or New Hampshire summer cottage and was visited regularly by Miller or her three siblings. For a while, he lived near Miller's sister in Denver, then returned to New England to spend his final years in a facility close to Miller's Massachusetts home, where she could visit him as often as she chose. Her experience was defined more by confusion than constant chaos: "My particular version of the caregiver's dilemma," she muses, "was one of confusion: moral confusion, emotional confusion, ethical confusion, practical confusion." Horrible, for sure, but more balanced than Cooney's moment-to-moment whirlwind.
There are also differences of time and financial circumstance. Cooney's story is immediate, written as the experience was happening and her mother was alive. Miller's memoir looks back at events that happened 15 years earlier, inevitably softened by time. Having access to greater resources permits Miller and her family more flexibility and relief. Finally, there is a vast difference in temperament between the mercurial Cooney and the more restrained Miller, and between Cooney's mother and Miller's father.
Neither "Death in Slow Motion" nor "The Story of My Father" lets the reader off easy. Both show how painful Alzheimer's is to everyone involved. But they prepare us for what may lie ahead as we age, and as medical science improves its ability to extend our lives, sometimes to the point that our bodies outlive our minds.
Copyright (c) 2003, Chicago Tribune