After my grandchildren returned home from school one day, I had a chance to talk with them about my Alzheimer's.
When we were here at Christmas, I didn't talk with them because I was under the mistaken impression that Laurel (my daughter) was going to wait until my symptoms were more noticeable before telling them about my diagnosis.
In fact, after our October conversation in which I revealed my diagnosis to Laurel, she began crying. Eight-year-old Madeline noticed, so Laurel told her and 10-year-old Otto that their grandfather would have increasing trouble with memory.
Madeline's two questions were, "Will grandpa forget how to eat?" and "Will he forget how to talk?" Laurel answered, "We'll have to see."
So I wanted to talk with them a little about it. I asked them whether they knew about my "memory problem." They said that they did, but they didn't follow up with any questions, so I didn't press any further.
The children haven't related to me any differently.
When I mentioned something that happened to me in childhood, Madeline—always energetic and inquisitive—asked me why I could remember something from so far back. I told her that most of my loss of memory was for things that happened recently, and she seemed satisfied with that.
When I've had to ask them about things I've forgotten, they've just answered simply without remarking. I've found their matter-of-fact attitude quite refreshing. I feel no sense of embarrassment: This is just one of those things that happen.
Madeline and I were playing Rummicub, a game with tiles and some of the features of the card game rummy; the purpose of the game is to play all your tiles, leaving none.
Otto, quieter and more cerebral, was hovering over each of us, "helping" by pointing out our best moves. Toward the end of the game, I had three tiles left and could see only an obvious move that used one of my tiles. But Otto quickly rearranged the tiles around to show me a move that used all my tiles.
Not only had I not seen the possibility of the move, but—even after he showed it to me and then returned the tiles in their previous position—I couldn't duplicate what he'd just done. I asked him to show me a second time, but I still couldn't follow it. Only after he'd showed me for the third time could I remember the steps long enough to duplicate it! He seemed more pleased with himself than bothered by my disability.
True, the move was somewhat complicated, but seeing possibilities within chaos has always been my strength. I wouldn't have been able to imagine requiringthree demonstrations to understand it.
There were two different cognitive losses involved.
First, I couldn't see the move ahead of time, which is, I think, the loss the ability to hold several things in my mind at once and, therefore, not see the abstract implications of an action.
Second, the memory loss (that I'm getting used to): I wasn't able to remember what Otto had just showed me. Like my inability to remember what had just happened in a soccer game with Kai in Seattle, my immediate memory is very impaired.
Again, however, the kids seem to accept it as just the way it is. They'll say something like, "That's your memory, right," and life goes on.
I've felt no embarrassment with them at all; in fact, we feel more bonded.
A retired physician and accomplished author, Dr. Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment, which he says is almost certainly Alzheimer’s disease. His voice offers a profound perspective that will help AgingCare.com caregivers to better understand what it’s like from inside the diseased mind. View David Hilfiker’s profile.