One House, Three Generations, and a Journey into Alzheimer’s
Broadway: 326 pp., $25
In the ‘60s, it was " cancer"; in the ‘80s, “AIDS.” Today “Alzheimer’s” is the healthcare word that can freeze a pleasant dinner conversation. Maybe it’s spoken in a whisper; maybe it’s left unsaid. Not so by Andrea Gillies, who raises her voice in “Keeper” to describe in moving but unsentimental terms the day-to-day experience of caring for Nancy, her Alzheimer’s-afflicted mother-in-law.
While some Alzheimer’s books, such as John Bayley’s “Elegy for Iris,” are suffused with memories of the person before illness, Gillies intersperses her narrative with smart, easy-to-understand passages on the history and science of Alzheimer’s. “Keeper” won the U.K.'s Orwell Prize for political writing and the Wellcome Trust Book Prize for medical writing.
Gillies and her husband, facing his parents’ declining health, summoned the resources to buy a spacious Victorian home on the Scottish coast large enough for all of them: Gillies, her husband, their three children and Nancy and her husband, Morris. The property had several acres; they kept dogs, a large garden, chickens and horses. From inside the house, they could see the rocky coast and windblown sea.
There, Gillies, a writer, hoped she would connect to the sublime — that she would be stricken by a sense of awe, immensity and the power of nature and an animating force behind it. She believed that the sublime might reach her mother-in-law too.
“Wild and desolate beauty is, it turns out, not a backdrop to life that works for Alzheimer’s,” she writes. “Mistakenly I’d thought that the Sublime would make itself felt in Nancy’s circumscribed life, that its primitive kind of language of symbols and feelings (the feeling, simultaneously, of being nothing in the universe and its dead center) would speak to her, digging deeper than language can, or that at the very least she’d find the wildness stimulating.” But neither Gillies nor Nancy was moved.
Early on, Nancy could express herself, but she needed help dressing, a sign of the disease’s grip. In the new house her difficulties increased: Her short-term memory was degraded so that she had a hard time recognizing where she was. Its resemblance to her childhood home provided, instead of comfort, confusion: She sometimes insisted her long-dead father was nearby.
Disorientation aside, she wanted to be active. Morris, who had trouble walking, sat watching television, leaving Nancy to join Gillies in tending the garden, cleaning and cooking meals. Gillies gave Nancy simple tasks, which she enjoyed but often botched — she’d use clothespins backward, or dust the same spot over and over, not realizing she’d done it before. Gillies welcomed her companionship as part of her caretaking; she became adept at shifting Nancy out of quick-set dark moods by goofing around and making jokes. More than any other member of the household, Nancy craved and demanded Gillies’ attention and engagement.
Everything — family, home, work, business — fades into the background as the book’s narrative focuses on Nancy and Gillies’ efforts to care for her. The twosomeness becomes claustrophobic, suffocating; the passages on plaque and parietal lobe damage may be grim, but at least they provide a relief from Nancy’s relentless personal decay.
This is what makes Alzheimer’s such a frightening disease: the force of its incurable loss. It is tragic to read of Nancy’s decline from participatory and conversational to an anger-riddled woman who can’t recognize her husband, who won’t brush her teeth, who secrets away her feces. Watching this up close, Gillies is forced to confront what exactly makes Nancy Nancy — really, what makes any of us ourselves? “We don’t have brains; we are our brains,” she writes. “Lose the use of your brain by degrees and the self is stripped away layer by layer.” Religion provides more comforting answers about what constitutes the self than do her investigations into memory and the mind.
And yet Gillies does not look away. She details how Nancy, bereft of almost all context, plagued by anger and frustration and bursts of paranoia, turned dark, focusing on Gillies in particular. She no longer wanted to help; sometimes she thought she was a prisoner and Gillies her overseer. She became physically aggressive — more than once.
Just as baldly, Gillies reveals her own failures. Her generosity is exhausted; she is depressed, resentful. Nancy — and 5 million Americans — suffer from Alzheimer’s, a debilitating, devastating, terminal illness. If it affords few moments of grace, at least Gillies has said that honestly. And out loud.