For a few years after she was diagnosed, my mother said the words, “I have Alzheimer’s disease” out loud, in public and often. She was in her mid-sixties, looked young and fit, spoke like the retired English teacher she was. She understood that the clerk in the grocery store or the waiter in the restaurant would be more patient with her if they knew why it was taking her so long to find her credit card or sign her name. So she told them. She spread those little learning moments wherever she went.
I was the one who couldn’t get used to it. (I wrote a whole book about not getting used to it.) The looks we got in return—surprise, pity, shock—made me squirm. But later, when I had to say it for her because she no longer could, I remembered those early-stage days with a sort of wistful nostalgia. My indomitable mother looked the world in the eye and asked not for pity but for patience. And you know what? When you ask for patience, you often get it.
My mother went public because it made sense. She was being her practical, problem-solving self. She probably would have scoffed at the notion that she was a pioneer; helping to build what the Alzheimer’s Association calls a “dementia-friendly community.” And because I am now as old as she was—57—when she began to wonder if something might be wrong with her brain, I have to wonder if I would be so brave. No, I don’t wonder. I know. I am NOT that kind of brave.
When I forget a name or a word, or hit “save” instead of “save as,” or go to the store to buy the ingredients for Chicken Marbella and get everything but the chicken, or leave my driver’s license in my running shirt pocket for two days—I think that almost covers last week’s list—when I have those moments, all I feel is fear. Fear that someone will think that I’m… slipping towards Alzheimer’s. As if the shame of dementia would be worse than dementia itself.
In a recent essay in The New Yorker, Michael Kinsley wrote about how we are “comfortable with the idea that physical health is not just a single number but a multiplicity of factors. That’s where we need to arrive about mental problems. As we get older we’re all going to lose a few of our marbles.”
Kinsley was diagnosed with Parkinson’s disease twenty years ago at age 43. He writes about what it feels like to learn that he’s apparently already lost a marble or two: that his most recent tests show his brain’s executive functioning abilities have slipped. And yet he can still write eloquently, and at length. And he gave me a whole new way to view the concept of a dementia-friendly community.
If we were tolerant of a few “lost marbles” in the same way we tolerate a limp or a deaf ear—if we naturally, easily, rose to help people with dementia the way we help someone with a broken leg get up the stairs—the way I saw most clerks and waiters help my mom—we could create a dementia-friendly world. Not could, must: more than five million Americans are currently living with Alzheimer’s disease, and we know those numbers are going to soar as the Boomer generation ages. So let’s do it. And let’s start small: by just helping each other over those awkward moments. Your lost marble or two might be different than mine. Together? We’ll be fine.
This Friday, May 16, quite a few experts will be in Seattle for the regional Alzheimer’s Association conference, including Dr. Cameron Camp, who is a leader in helping communities become “dementia-friendly.” Camp will also be speaking on Thursday, May 15 at 6pm at Town Hall Seattle.
The Restless Nest is on the radio every Tuesday morning at 7:45 a.m. on KBCS.fm; 91.3 in the Seattle area. Podcasts available.