Several decades ago, I was a “Junior Year Abroad” student, living in France before the days of email and Skype, when letters took two weeks to arrive and long-distance phone calls cost eighty dollars. I was far from home, speaking my schoolgirl French, pretending to understand the lectures at the Sorbonne. It was exhilarating, of course, but it was hard.
I remember standing on the sidewalk one gray autumn day, surrounded by French people, feeling lost and alone and very tired, thinking, “Okay everybody, game over. You can stop now. No, really. Thanks for helping me practice, but . . . no more French. Let’s go back to normal life and speak English. Okay? Please?”
But they kept speaking French, because they were French, and we were in France. And I had to learn their language.
Dementia care can be like that.
When I’m with my mom I sometimes feel like a foreign exchange student, learning a new language and culture. She’s quite lucid, but she forgets some things and invents others, so communication can be a challenge. I’m constantly watching for cues, listening for key words, trying to understand what she needs from me that she cannot express, struggling to live in her world while staying grounded in my own.
It’s tiring. Some days I want to say, “Okay, Mom. Thanks for the opportunity to grow, to learn patience, to expand my knowledge of human cognition and neurological structure. It’s been great discovering new ways to relate to you. I really feel this whole experience has made me a better person. But you can stop now. Let’s go back to normal life. Okay? Please?”
But we don’t, because we are in the land of dementia, and I have to learn her language.
So I’ve been reading Joanne Koenig Coste’s book Learning to Speak Alzheimer’s. Coste cared for her husband through early-onset dementia in the 1970s. She has spent more than thirty years developing an approach to dementia care that helps the “care partner” (her term) enter the patient’s world. Coste believes that communication is possible at any stage of the disease, if we pay attention to the feelings behind all those confusing words and actions.
Feelings cross borders, even when words can’t. It helps to remember that when venturing into unknown territory.