In my last post I wrote about the general embarrassment that surrounds Alzheimer’s. Embarrassment may not seem like such a big deal, but I believe it has a lot to do with the isolation of people with Alzheimer’s. And isolation is a big deal!
I think it may be helpful to break the embarrassment into two different pieces: the embarrassment that a person with Alzheimer’s feels for her own behavior and the embarrassment that others feel in the presence of a person with Alzheimer’s.
As you’ve probably figured out if you’ve been reading this blog, I haven’t felt embarrassed or ashamed of my Alzheimer’s disease … at least not yet. It’s true that my disease is early and my behavior not yet too gross, so things may change. But I think the reason I don’t feel embarrassed is because I’ve told most everybody I’m around.
I’ve always had trouble remembering names and faces and, in the past, it’s caused me lots of embarrassment. I felt stupid and I worried the other person was offended.
Shortly after my diagnosis in September, I started slowly telling people: my family and closest friends, our small faith community, my email contact list, and finally the whole world through this blog and the Washington Post.
My memory has now gotten much worse, of course, but now we all know why. I know that there’s a reason beyond my control for my declining memory and I don’t worry the other person is offended.
When I forget names or get confused in conversations or forget to do things I’ve promised to do, I now make some reference to the Alzheimer’s disease, we all shrug our shoulders and we continue on. In December, I made a $24,000 mistake in figuring out our faith community’s next year’s budget. Before I discovered the mistake, we’d already allocated the money to various missions, so it was a mess. Previously, I would have felt hugely embarrassed and ashamed and it would have taken me weeks to get over it. This time, none of us was very happy, of course, but, because everyone knew my condition, no one was resentful, and I wasn’t embarrassed. (Yes, it was clear that I shouldn’t continue as bookkeeper, however.)
The other evening at a reception, I was talking with a woman I knew socially about Alzheimer’s in her family and about her concern over her own symptoms. Because there’s a big difference in heritability between autosomal dominant (“early onset”) Alzheimer’s and the normal later-onset disease, I was curious about her age and said, impulsively, “You’re about fifty-five, right?”
Umm … it is it highly unacceptable in American culture to suggest to a forty-four-year-old woman that she looked like she could be fifty-five. Under other circumstances, I would have been mortified and would have spent the rest of the evening trying to make excuses. But I wasn’t embarrassed. We lose some of our inhibitions with this disease, and—despite the fact that I’d just steamrolled a social norm—I just rolled my eyes, as if to say, “What do you expect?” As the evening went on, she mentioned my faux pas several times; I just kept rolling my eyes. I knew that in the normal social context it was unacceptable; but both of us knew that Alzheimer’s had changed that context. She may still have been offended, I suppose, but I wasn’t embarrassed.
So at this early stage in the disease, I don’t feel very embarrassed because I’m aware of a new context. At some point, of course, I’m going to get to the place where I won’t be embarrassed because I won’t realize I ought to be. Other people, like my wife Marja, may be embarrassed, but I won’t be.
It seems to me, then, that the isolation that plagues so many people with Alzheimer’s is not because of their embarrassment, but the embarrassment (or fear of embarrassment) of friends or family that threatens them and drives them away. I’ll look at that in a future post.
I’d be very interested in getting comments from any of you with relatively early disease who have made a deliberate point to inform other people. What has been your experience with your own embarrassment? Have you regretted going public?