Dealing with a parent who develops dementia or Alzheimer’s is nothing new to the universe, and, yet, one of the hardest parts of being involved in a parent’s transformation—from Mom or Dad to patient, and then to child, and then to something not even quite that—is that there are very few people to talk to. Those who haven’t had to deal with this type of caregiving or witness this kind of deterioration praise caregivers for their selflessness without quite understanding how trying it can be. There is little solace, even sometimes from other family members.
Fortunately, in recent years, myriad memoirs that deal with this topic have been published. As I began to dig through my own memory bank to write about my experience taking care of my father—who was diagnosed with dementia at age eighty-one, when I was seventeen—I found solace in the work of other storytellers. Alex Witchel, Loretta Anne Woodward Veney, Linda Grant, and Andrea Gillies, in particular, address the complex and unexpected emotions that are so much messier than the predominant narrative of the caregiver as saintly martyr.
Day-to-day life with someone who has dementia or Alzheimer’s is made up of a thousand tiny stories. Sometimes, they are hilarious. This humor is both real and a coping mechanism. Once, my dad took everything red out of the refrigerator and tried to make tomato sauce. We laughed about it, but what it revealed was that his brain was trying, and failing, to do something that was a fundamental part of who he was: cooking. Alex Witchel’s memoir All Gone focuses intently on this aspect of dementia, how it strips from a person the things that define him or her. All Gone is full of recipes that were handed down through Witchel’s family; she asks, “Is there any contract tighter than a family recipe?” But when the guardian of that recipe begins to mistake, say, cranberry juice for tomato paste, the contract is in jeopardy. For Witchel, preserving the recipes on paper protects them from the slow unraveling of the human mind. Keeping a recipe safe means keeping a piece of her mother’s mind, her personality, safe, too. Which is why I make French toast the way my dad always did.
Witchel’s mom, Barbara, had always been the family’s caregiver, the home-cook whose food could cure anything from a cold to heartache; her “disappearing in plain sight” forced Witchel to re-evaluate not only who her mother was but who she herself was. No matter how old we get, we always see ourselves at least partly as our parents’ child. But in my father’s eyes, I shifted. I was sometimes my brother, sometimes my mother, or (very rarely) a complete stranger. What happens when your parent doesn’t recognize you as their child? How can you hold on to that part of your identity?
Loretta Anne Woodward Veney’s aptly titled memoir Being My Mom’s Mom examines precisely this quandary. “I never want to think I am forgettable,” Veney writes. Her memoir explores the effects of her mother’s dementia on both of their lives as Veney goes from being a daughter to being her mom’s mom. Both women are strong—Veney had a successful academic career, and her mother, who had placed great value on her own independence, asked to be put in a care home so as not to impede on her daughter’s independence—but their new circumstances changed their relationship. Veney highlights the moments when she sees her mother’s personality “shining through the shadow of Dementia.” Like Witchel’s memoir, Veney’s story is uplifting despite its abject sadness and an undercurrent of grief, which is also, in some ways, a form of sustenance.
There is a moment of guilt as a writer when you realize you’re setting in print, forever, the most humiliating and debilitating moments of your parent’s life. I shied away from writing about my father’s more embarrassing tales, the ones that were embarrassing for me, too. Through reading these memoirs, I could see the balance that writing helps strike. Witchel and Veney both hold their certainty about their mothers, their knowledge of who they were, up against the constant uncertainty of living with someone who has dementia. I saw that writing could be not a way of inflicting humiliation, but a reaffirmation of something lost.
Families and personalities are built on oral history, and oral and ancestral histories are intrinsic to individual identity. I am Jewish, but my upbringing was strictly agnostic, and everything I learned of Jewish history came through my father’s stories and through school. As I began to lose my father, I worried I would lose my heritage, as well. In Remind Me Who I Am, Again, Linda Grant—like me, the child of Jewish immigrants—explores the threads of oral and ancestral history through her mother Rose’s dementia.
Grant had a fraught relationship with her parents. She went her own way—away from her Jewish identity, rebelling against her parents’ “densely Jewish” household and their expectation that she would marry a nice Jewish solicitor. This, combined with a disastrous first trip to Israel at sixteen, began to rupture Grant’s relationship with her parents. What makes Grant’s memoir all the more painful is that with dementia, the walls her mother had built to keep her past a secret began to crack. Grant undertakes the task of not allowing these memories to disappear. In a 2011 Guardian interview, Grant said, “I was embarrassed by my parents. I thought they had nothing of interest to say or contribute to anything. My real crime was not understanding that they were interesting, and I have been trying to make it up to them for being so indescribably blasé, so genuinely uninterested and dismissive.”
Her memoir combines the biography of her family with her own experiences of her mother’s illness. In addition, Grant illuminates how the parent-child relationship—never perfect in the first place—doesn’t miraculously become perfect because a parent is sick. Society expects that daughters, in particular, will gladly drop their lives to become caregivers, no matter how gross and sad and taxing that duty is. Grant and Andrea Gillies take a hard-line stance on this nonsense. In their stories, I found a sort of map to my own conflicting emotions—and a way to writing about them. Writing about emotions can be as hard as experiencing them, if not harder. Putting words to ephemeral, stomach-churning feelings makes them even more shameful, and shame is a very big wall for a writer to overcome.
I found a refreshing break from this shame in Gillies’s Keeper: Living With Nancy, which combines an extraordinary amount of science with the author’s story of caring for her mother-in-law in order to show us the darker, harder, sadder, meaner side of these debilitating illnesses. Gillies takes in her parents-in-law, relocating the family to a remote house in Scotland. In their shared home, Nancy shouts at Gillies and calls her a bitch, among other things. Gillies wonders if this is what Nancy thought about her all along. There are some schools of thought that argue dementia is simply a loosening of socialized behavior, that dementia/Alzheimer’s is actually the stripping away of society’s “niceness” to reveal the true state of a human being. If so, it’s an undeniably cruel process. Nancy’s deterioration is painful and raw, and it is hard to like her, which is the unlikeable truth about what can happen in these situations. For every sweet-yet-frustrating Barbara, there is an undone-and-mean Nancy, whose degeneration can make them, sometimes, cruel. Gillies, like Grant, is very clear about her exasperation at being a caregiver.
Nancy was eventually moved into a care home, where she “is better now. She has disappeared completely through the looking glass. She’s allowed to have her delusions unchallenged.” In a 2010 Guardian interview, Gillies said, “People find it hard to grasp that we don’t see her more often; they see it as neglect. But it makes literally no difference to her.” It is this kind of honesty that makes these memoirs, particularly Gillies’s, so helpful.
For me, reading about familiar experiences offered a sort of abstract sense of safety. I was not my father’s primary caretaker, but I did feel a strange and wild array of emotions at having to adapt to being a new person. So much of who I am I built upon my relationship with my parents. I credit my mother with my emotional intelligence and analytic ability. I credit my father with my love of writing. But there came a point when my father could no longer write. That stone in the foundation of my father’s identity disintegrated—and took some of my own foundation with it. Losing this cornerstone of my identity directly impacted my ability to write. The literal craft of writing anything personal became difficult. I defaulted to writing about others—music was my specialty—but I refrained from dipping my toes into my own waters of experience. Finding the memoirs of others who could do so was the first step.
In Zen in the Art of Writing, Ray Bradbury advises, “[I]n your reading, find books to improve your color sense, your sense of shape and size in the world.” In choosing to pick up any one of these memoirs, a reader is doing both of those things. I certainly was. In order to write effectively about myself and my father, I had to examine closely my own feelings and memories. Reading others’ stories helped me to unravel my own and find words to match the complexity of the most difficult moments. Bradbury also writes, “We have our arts so we won’t die of truth.” These memoirs of dementia and caretaking tap into a secret language that only some of us speak. If we can teach more people the nuances of this language, then maybe our sense of shape and size in the world will grow.