[Note: To read these blogs in chronological order, begin at the end: The Journey Begins.]
When I came home from shopping today, an empty gallon water bottle was sitting in the hallway. Optimistically, I thought to myself that it was there to be recycled, but it wasn’t; it was there as Bo’s reminder.
You see, every night he fills his apnea machine with distilled water before going to bed, and many nights he says: “Remind me. I have to go to Acme to buy distilled water tomorrow.”
“There’s water in the cellar, honey. Twelve bottles,” I say automatically.
“There is? Where? I didn’t see any down there.”
“They’re on the bottom shelf,” I emphasize, resisting adding “where it’s always been.” (There’s just not enough room for a dozen or more gallon bottles in our bedroom.)
How many times have I said it? “There’s water in the cellar.” Maybe 30… 40 times?
Some things “take hold,” they penetrate Bo’s memory. But for some reason, the water simply never stays with him. I thought if I insisted that he go down and look at our supply in the cellar, it might help him to remember, but it didn’t. Maybe, I thought, if he goes to the store and buys 8 more, maybe then he’ll remember. It’s the theory we use in teaching: say, see, hear, hold, experience — internalize. So we went to the Acme and piled the cart high together. The cashier looked at us as if we were two old people building an air raid shelter. We brought it home and put it in its place with the other 12 in the cellar. But this isn’t how Alzheimer’s works.
We have repetitive conversations about so many things: Should he mow the grass? Are the cats in or out? How is my mother? For a while, he fixated on our cars — when they are due for inspection.
A friend visited for lunch one day, then emailed me that she felt as if she had been in the movie, “50 First Dates.” That’s a good description of life with Bo. For a while I had a very difficult time not being irritated when I repeated things, but now I do it automatically, as if the subject had never come up before. My life regularly takes on a new normal.
But as I try to describe this, I have to explain that there are many things which don’t have to be repeated. We often have nearly normal days, days when it’s like before. He gets up feeling well, works on the lawn, goes to the health club. We eat lunch or dinner out, play Rummicube, watch a movie, shop together. These are my gifts. My gems to hold close and remember when the times are bad.
But tonight or tomorrow, I expect to hear: “Remind me to go to Acme…” and I’ll reply, “There’s water in the cellar.” Then he’ll say, ”There is?” ….