An honest look at caring for a loved one with Alzheimer’s
The core of Andrea Gillies’s memoir is a scrupulous account of her daily life as a caregiver to her Alzheimer’s-afflicted mother-in-law, Nancy. Throughout this searingly honest book, which won the British Wellcome Trust prize for books on the theme of medicine and health, Gillies consistently conveys to the reader her “profound gratitude to the life of the mind.’’
Gillies’s account of Nancy’s descent into oblivion often achieves eloquence, but the chapters dedicated to the science of the brain and dementia are less successful. These sections sometimes interrupt the flow of the narrative, which then creaks under the weight of detailed medical and technical exposition. Yet in other parts of the book Gillies effectively and succinctly explains the brain’s complexity to the layperson. “A damaged brain,’’ she writes, “and its efforts to keep pushing on, delegating jobs to other areas, opening up and staffing new fronts, appear nothing short of heroic.’’
In order to best care for Nancy, Gillies, along with her husband, three children, and father-in-law, relocate from Edinburgh to a large, drafty house in northern Scotland that Gillies notes is more Agatha Christie than Jane Austen. She tellingly writes, “I haven’t seen anything or heard spectral footsteps, but the whole property is soaked in what I can only describe as pastfulness.’’
Extreme weather, soul-sucking tedium, and Nancy’s increasingly erratic behavior come together as Nancy’s deterioration accelerates. Adding to the overall moroseness in the house is Nancy’s husband, Morris, who can no longer walk, and silently watches television all day, every day. “Their sitting room becomes a self-contained universe of televisual strife: assault, adultery, neglect, crime, rip-roaring arguments: all these keep Nancy smiling and the rest of us depressed.’’
The bedlam on the television screen mirrors the growing chaos in Nancy’s short-circuiting brain. Nancy forgets the purpose of cutlery. She’s baffled about dressing herself. The medicines she takes to calm down give her insomnia at night and leave her drowsy during the day. When Nancy’s not sleeping she’s mostly raging at her perceived jailer Gillies or randomly slapping her bewildered young grandchildren.
Adding to the discord is a parade of bungling social workers. It isn’t until Gillies and her husband are forced to admit that they can no longer care for Nancy that the UK’s national health-care system steps in and places Nancy and Morris on a waiting list for a nursing home. Gillies poignantly shows that, in the end, her two intense years of caring for Nancy are largely unacknowledged and unappreciated by a hollow medical establishment. By the end, she’s made to feel that she’s given up on her charge.
As much as I admire Gillies’s moving memoir, I stumble over the fact that she compares Nancy to an unwieldy toddler or “newborns in their total dependence on others.’’ I made the same mistake a few years ago in an essay I wrote about my father’s death from Parkinson’s disease and accompanying dementia. I wrote that the tables had turned, and I was now the parent who had to spoon-feed him.
A geriatric social worker gently took me to task, pointing out that my father was a grown man, a man who had had a significant life and, most importantly, a man who was and would always be my father. That vital insight, which would give the reader a three-dimensional portrait of Nancy the woman, the mother and grandmother who had not always been sick with Alzheimer’s is what is ultimately missing from this otherwise accomplished book.
Judy Bolton-Fasman is a columnist for The Jewish Advocate. She can be reached at firstname.lastname@example.org.