Earlier this week I reminded her that I'd be coming to visit her. She squealed with delight. Then she said, "maybe it's good that I forget things because I get to get excited all over again when I remember." Now this is optimism at its finest. There are many jokes like this about Alzheimer's, but I'm here to tell you that they are true.
Before I encountered memory loss close up, I thought of it as an on-off switch. You either had it or you didn't. Now I realize it is far more complex. We tend to think about the extremes, when a loved one no longer knows who we are or retreats into silence. I often have people express concern about my mother, projecting their experience with the disease. People who knew my mother's active curiosity about the world are most dismayed, aware of what has been lost. I want to remind them that there is still much that remains. There are many faces to Alzheimer's and they don't all need to be coupled with distress. Sometimes we get so focused on the loss that we fail to appreciate what is right in front of us.
If I only had my phone calls with my mother, perhaps I would feel the loss more deeply. They have shrunk in content. What was once a rich relationship, filled with confiding and the occasional book review, now revolves around reminders of pills and which aide will arrive when. I have found that our relationship is best conducted face to face. With a stretch of time to talk, different sides emerge.
I come to visit her every few months and stay for a week. It is a different quality of time to have a week. My sister, who lives in the same state, comes in weekly for an overnight visit. It is the highlight of my mother's week, but is filled with hair appointments, grocery shopping, the functional needs of everyday life. I have a longer stretch and it allows for things to bubble up.
I think about what I can bring on my visits that will enrich her life. It is all a bit of an experiment. On one visit we did family history collages together, on another she heard me do a talk on genealogy for a local organization. Sometimes I introduce her to a new food with mixed results. We go to museums, 3-D movies, trolley rides and botanical gardens. She doesn't have much physical energy anymore so I need to tailor what we do to her capacity, but the act of showing up seems to be deeply satisfying to her. I used to take her on rather intense trips to Europe, filled with activity and stimulation. The stimulation from what we do during my visits triggers a residual memory for her. "We have a special relationship", she says. "We understand each other. We always traveled well together."
I was the traveling daughter who exposed her to the world. My sister provided the grandchildren. We speak to different sides of my mother. We each feed different aspects of her memory about herself. I tell her, "you always enjoyed exploring new things. You just needed to be with someone you trusted who would lead the way." That feels right to her. "You know me so well," she replies.
My mother was always a reader, but can no longer retain the thread of a story. I decided to try something different with her on this visit. I've been taking an essay class so have been writing personal essays. I read her some of them, thinking perhaps a short story with some familiar elements that was read to her would be somehow more accessible. She listened intently, absorbed in story. I realize that my touchstone in this terrain is my knowledge about her and the things we shared.