How Dementia Locks People Inside Their Pain
On her first night home from the hospital, between bouts of writhing in pain, my grandmother stopped to ask me, over and over, “Qu’est-ce que j’ai fait?”: “What did I do?”
My grandmother, Denise, is 82 and in the late stages of Alzheimer’s disease, which means she can no longer form new memories. Late last summer—it’s impossible to say when, exactly—she fell and fractured a vertebra. Immediately, she forgot it had happened. Pain became the fall’s only remnant evidence. It took my family weeks, and two hospital trips, to understand why she’d stopped eating or getting out of bed.
In anticipation of her second discharge from the hospital, I traveled to France to take care of her. When I arrived at the apartment where she lived alone, I was entirely unprepared for how intensely the Alzheimer’s could amplify her suffering.
My grandmother’s throat rattled with every breath. She moaned in her sleep. In childlike tantrums, she kicked her legs and flailed her arms when I tried to get her out of bed to eat. She developed a cough so intense that it sounded, from a room away, like vomiting, and sometimes did turn into vomiting as her body tried to convulse the pain away. She couldn’t tell day from night, and she got lost in her own home, even in her own bedroom.
Every few minutes, she resurfaced to rediscover her agony, resulting in a panic that
