A French Village’s Radical Vision of a Good Life with Alzheimer’s

by Marion Renault in The New Yorker

Four years ago, I spent a morning cooking couscous with my grandmother Denise near Grenoble, France, where she has lived most of her life. We peeled carrots and turnips, seared lamb and chicken, tied bouquets of herbs, and mixed hot water into the grains with our bare hands. I wrote down her recipe as we went along. My mamie has Alzheimer’s, and I had to learn to make her couscous on my own, before she forgot how to do it herself. That day, I recorded a video of her on my phone. She was sitting in a familiar kind of wooden ikea chair that you have probably sat on before and that I will always associate with her. As she gazed out the window, a thought occurred to her, and she turned to me and asked, “C’est samedi que tu pars?” You’re leaving on Saturday?

Yes, I told her. I was returning to the United States, where my parents moved our family when I was eighteen months old. I found it painful to leave; each time we visited France, the progression of her disease seemed to become more unignorable. Her pencil trembled when she practiced her handwriting. She moved her daily baguette from the kitchen counter into the plate drawer. Late at night, she muttered and puttered around her apartment. When her wandering inconvenienced us, we guided her back to her chair. My family talked about the chair as if it were her refuge; it was probably more accurately described as our refuge from her confusion.

In the summer of 2020, my grandmother stopped eating and getting out of bed. She had fallen, fractured a vertebra, and forgotten about it. I flew to France with a dozen of Mamie’s favorite sesame-seed bagels, and I lived with her as she recovered, fetching prescriptions for the pain she was constantly rediscovering, and rubbing her back when she coughed until she retched. I lay in bed with her until she fell asleep. I fed her. I learned, for the first time in my life, what it meant to care for someone. After five weeks, my mom took my place as Mamie’s at-home caretaker.

Like so many families that are affected by Alzheimer’s, we searched desperately for a new place where my grandmother could live. We viewed her isolation in her seventh-floor apartment as a risk to her health and safety, and felt that it was not only right but necessary to exchange what was left of her autonomy for the round-the-clock, structured care that she could receive at a nursing home. About half of the six hundred thousand people who live in France’s ehpads, or “housing establishments for dependent elderly people,” have dementia. These are imperfect institutions: in 2018, French nursing-home workers went on strike to protest staff shortages and cost-cutting, and, earlier this year, disturbing reports of abuse and neglect, untrained staff, and the rationing of food and diapers by a for-profit nursing-home company put the country’s elder-care system under intense public scrutiny.

A nursing home in a nearby suburb finally offered her a place after weeks of uncertainty.

My grandmother’s life now seems safer, but smaller. Her memory-care unit is locked with keypads to prevent her from wandering out and is rarely unsupervised; the woman who taught me to cook couscous no longer has a kitchen. My family is satisfied with her care: the staff is affectionate, Mamie is often cheerful during visiting hours, and she regularly participates in Montessori activities such as vegetable peeling and sing-alongs. I never saw her with pets when I was younger, but she now lets the nursing home’s service dog, an enormous Labrador named Nova, cuddle with her in bed. Still, it seems inevitable that, as my grandmother’s condition declines, she will lose the few freedoms she has left. Last year, I stopped bringing her bagels after I noticed that they were furring themselves green inside their plastic bags. This year, she complained of being weaker, of fighting with her brain but not understanding why. She sometimes referred to her nursing home as her aunt’s house, or the children’s daycare where she worked for decades. Someday soon, she will no longer be able to play dominoes with me—she won’t understand how to win, or even how to count the dots on each tile. Later, she might be moved to the unit next door, where people with more serious cognitive limitations live under even closer surveillance.

Anyone who has cared for someone with Alzheimer’s is likely to be familiar with this transaction. We cede their freedom to gain a sense of security—theirs, but also ours. We attempt to resize their world, removing the choices that might pose a danger to them. But I often wonder whether the standard approach of a nursing home—the constant surveillance, the rigid schedules for waking, bathing, eating, socializing, and sleeping—is the best that we can offer to loved ones with dementia.