That first year we found out about Bo’s condition, I was almost frantic. I can’t explain my reaction, but I started to have anxiety attacks, sometimes just walking around the block taking deep breaths, trying to make the stone in my chest go away. When he went somewhere, I paced the house, and if he didn’t come home when I thought he should, I was sure he was lost and actually expected the police to come to the door. If the phone rang, I held my breath. I could barely hold myself together …
You see, I was sure the condition would progress rapidly, stealing him away from me in great chunks of loss.
Now it is four years later and I have learned that he is indeed being stolen away from me, but insidiously, in small steps, disappearing in so many ways …. words, ideas, short– and now long-term- memories. I know that he lives in the moment, yet sometimes I can almost forget because we don’t have the kind of conversations that reveal his changes. There is a repetitiveness to our lives, the everyday events, the same questions and interchanges: meals, cats, lawn, my mother …. the things he knows. His reality.
But now I see a new loss creeping up on us: the loss of language. He’s losing words and thought step-by-step in reverse.
I found this note on the kitchen table last week:
“C.B.S. farmacy called” My heart nearly broke. I knew this would come one day but I hoped not so soon.
Yesterday there was another note, this one barely decipherable:
“Eyer is bussing” (my ear is buzzing) and then “Tuesto Gas Tues Aug 30” (which I couldn’t interpret and he had no idea what it meant.)
Sometimes when he can’t find words, he gestures or just stops talking. What kind of plant (pie) do you have? Where is the (arm raised and pointing) ???? (deodorant)
“Where is my machine?” He stood in the front hall making the motions of pushing a vacuum cleaner. “The vacuum?” I asked. “Yeah.”
It reminds me of the concept of schemata and reading comprehension that I teach in my classes. Our brains are like a filing cabinet, with each piece of new information filtered into its related folder. As Bo reaches for a lost word, he goes into the file folder and retrieves a related word. Sometimes the folder can’t be accessed and there’s silence as he searches; then I help to fill in the blank. This is happening more. This afternoon, for example, he asked me if I wanted the “black box” (my briefcase) put into my car. Later he asked me if I had a “brush” (as he made the motions of putting up an umbrella.)
I cannot imagine the frustration he must feel. We were walking around the block the other day when I commented on the beauty of the huge, old trees. “Have you looked… is it better than …” he tried to ask, and as I helped him with questions, I found out he was trying to ask me if our town is a really good one compared to others. We’ve lived here since 1976 and he always knew the answer.