So much of how we spend our days now is contingent on Alzheimer's--what it's making Bob forget, what it's allowing him to do, how much time it takes to help him. Many folks think of Alzheimer's (and I guess I once did) as a disease that makes a person lose their memories of past events or forget where they left the car keys. But it's so much more than that because, actually, everything we do as people (brush our teeth, cut our meat, put on clothes) involves our remembering how. We learn so many life-skills as we grow from infant to child, and then the disease of Alzheimer's causes us to unlearn everything we know, incrementally--the same way we learned them in childhood. Watching as Bob loses those kinds of memories is even harder than the moments when he's not sure who I am, doesn't remember our trip to Alaska, or can't find his glasses. It is heartbreaking to see him weep because he can't figure out what to put on, can't figure out how to fasten the seat belt, or knows he's looking at a photo of someone he should recognize but just can't.
I've heard it said that the disease is harder on those around the person who has Alzheimer's, because at least the one with the disease doesn't know what's going on. I think that's true once the disease progresses far enough, but it's not true yet of Bob, and so he grieves his losses over and over--and so do I. I write this not as a "pity us" episode, however, but more by way of both reflecting where we are and perhaps, broadening understanding about Alzheimer's. We still enjoy futzing in the yard, having coffee on our swing, going for walks (hikes are becoming a bit "iffy" because Bob seems to be a little less steady on his feet recently.) Time with our daughter and grand kids is the high point of our days--those little ones make us laugh and help us forget the specter of Alzheimer's for a while. Calls and notes from family and friends mean more than we could ever say. Music has the power to lift our spirits, so we're playing it often, and might be found spontaneously dancing in the kitchen. We still try to get out for a yoga class, to a concert or other area events. I go to a monthly support group. We manage to keep up with housework together. We're learning to accept the need for, and occasional presence of a "personal care attendant" who comes for respite when I need to be away. It's a whole new chapter in our lives, and we are grateful that we have so many loving family and friends who want to share in it with us. This blog will be my way of making that possible. Writing it, I hope, will be therapeutic for me. It will also make it convenient to "check in" on us at any time, and it will mean that I don't have to talk on the phone about Alzheimer's in Bob's hearing.
