Funny how one sentence can pack such a wallop. The other day I received a flattering comment from Alzheimer’s Wife who writes an elegant blog about caring for her husband with advancing Alzheimer’s. I am pleased that she like my post of course. But all I can focus on and what I keep re-reading is the second half of her sentence, “and this really brings home my life about four or five years ago.”
Will I be living Alzheimer Wife’s far from easy life in four or five years? The scary thought I mostly try to avoid bubbles up. I have read her excellent, low-keyed but insightful blog about dealing with her husband’s advancing Alzheimer’s without quite connecting it to my life with Ralph.
I don’t want to worry about what is coming. I prefer the strange complacency of MCI Purgatory where Ralph and I carry on perfectly reasonable conversations (that we sometimes repeat word for word three or four times in less than an hour), and where Ralph functions responsibly within the parameters of his (increasingly restricted) routine. Where the doctors’ warnings about what lies down the road for Ralph don’t quite resonate as long as Ralph’s tests scores hold steady, even if holding steady means treading water with the help of Namenda and Donepezil.
In MCI Purgatory I can choose not to notice small, undefined changes: how after a burst of intense reading a few months ago, Ralph now barely looks at the pile of books beside his bed; how he no longer bothers to follow the thread of most television dramas, how his favorite activity has become sitting on the porch watching squirrels with his dog—well, to be honest porch sitting has always been one of Ralph’s favorite activities, but he used to sit there listening to talk radio gathering fodder to argue politics with me. The radio is still on but he doesn’t much listen, and we never argue because he agrees so easily with whatever I feel like pontificating about.
But Alzheimer’s Wife has forced me to think about the years to come, to wonder if I should be using this time better—working with more discipline on my writing, volunteering more actively in the community, travelling. I keep making those plans but have yet to follow through.
Mostly Ralph and I live in a kind of calm bubble of daily routine, many of those hours spent nearby but apart. I write down any activities or appointments he needs to complete on an erasable board. Then, while I take care of the loose ends of our business and avoid working on my third novel, he mows grass, does the chores we’ve set together, or sits on the porch.
The one ritual that defines us as a couple, that we still share almost exactly as we did thirty years ago or maybe with improvements, is morning coffee. When we first married, I didn’t drink coffee but made Ralph’s every morning because his first wife did (or he said she did). Eventually I started drinking it myself. Then once the kids were out of the house, Ralph and I started taking turns making it and bringing each other our first cup, then often our second. Morning coffee, Ralph is sharpest and most relaxed. We watch the birds through our uncurtained window, listen to NPR rest stories, talk. This when we discuss any issue I want Ralph to understand and remember, doctor’s appointments, financial decisions, anything about our kids, lately the preparations for my daughter’s upcoming wedding.
In four or five years will we still be able to share coffee? Alzheimer’s Wife can’t answer that question. No one can. But Ralph and I giving up morning coffee together is the Rubicon I dread crossing.