(Time to join up with Kate Motaung’s Five-Minute Friday group and write about her word of the week: Notice. OK, so I wrote 5 minutes, and then 5 more and then ….. )
Alzheimer’s is the kind of slow, insidious disease that creeps along day after day, week after week, year after year, silently stealing away brain cell after brain cell, creating little changes that only those around you notice at first.
I recall trying to cover for Bo in the early days. I was always on high alert when we were around people, had a technique for inserting people’s names so he would know who they were, and I’d move in aggressively to greet people I didn’t know, saying my name so Bo wouldn’t have to do any introducing. I would finish ideas or move him away from something that I perceived to be “dangerous” (i.e., would reveal his condition) and started taking over conversations in which he would have been the leader , even with close friends.
And watching his mannerisms and movements, I hovered around him. This wasn’t the couple we were; we always gave one another a lot of space, and I would hear the pleasant banter and his infectious laugh across the room where he was knee deep in political or news conversations. But roles had to be reversed. I recall feeling responsible for keeping conversations going, for contributing to dinner banter which I would traditionally have left to him. If I allowed no blank spaces in the conversation, surely the others wouldn’t notice Bo.
And as I noticed changes, I made accommodations — calendars and checklists and white boards on the kitchen table and the door into the garage so I could write reminders to him. Things like: “I went to the grocery store — 10 am” or ” We are going to see Mother at 1.” I left these notes long after I knew that he didn’t read them because they made me feel better. I started crossing off the days of the calendar and calling too often after he had stopped calling me and wasn’t noticing my notes.
I watched life become flatter, duller for him as enthusiasm left and interest in hobbies and the world waned. He became unwilling to be in groups of people and didn’t want me to invite people to the house. Going on vacation became an impossibility as he fretted, even had nightmares, worried about packing, couldn’t sleep. It was too scary for him, I think.
But when I started admitting to everyone that he had Alzheimer’s, it was very freeing for me. I realized I hadn’t wanted people to know because they would see him differently, they’d see him as sick, not as the man he was, but someone weaker, to be careful around. So when I finally started telling people, I was able to relax because I realized that they would also protect him, and by that time, he needed it. My heart broke.
And saddest of all, this would change the course of some of our friendships. Two of our closest couples — friends since college — stopped calling. They literally disappeared from our lives when they realized the situation. People often make excuses for others’ behavior by explaining that “they just couldn’t handle it.” I don’t believe that for one minute.
I have learned a lot about how to be a friend to others through the many kindnesses people have shown us — some with whom we weren’t even close before , and I am constantly surprised by the gift of their friendship. I regret many opportunities I missed over the years to be as good a friend. It’s easier to do nothing. Life goes on, and helping with the illness slows you down. Some people don’t want to be slowed down.