Bella and I are taking part in a drug trial she qualified for by testing positive for younger onset Alzheimer’s disease.
She takes a couple of pills each day, then goes into the doctor’s office every couple of months to get quizzed for a cognitive function score. They don’t tell us what the score is.
“Did I do better this time?” she asked me this week, and I said she did, but it’s hard to tell.
The doctor’s tablet keeps track of her answers from the last time we went in, but my brain doesn’t.
I’m a part of the study. I answer questions about how well she is doing at home — what she can handle and what she can’t.
She can still cook great-tasting dishes, but one at a time instead of several. She can get what she needs at the store, but without a list she might forget a couple of things, and if she has a list, she might misplace it.
It’s hard for me to see whether she is getting worse. I’ve gotten used to her symptoms, and when we’re together, I prompt her on some things and ignore her repetitions, so we function more like one brain than two.
In the doctor’s office, I had to stare at the floor to avoid making gestures that would tip her off to the answers.
“Is that right?” she asked me.
“He can’t help you,” the doctor said.
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She reaches out to me now all the time to confirm what we’re going to do and how we’re going to do it, which is a role-reversal.
It used to be me calling her from the store to confirm I was buying the right brand, me running my free-time schedule past her first.
But I had methods for getting my way, too, so our relationship used to be more combustible than it is now, throwing off sparks ignited by the clash of competing desires.
Now any fires we create are mellow ones.
We sit together and watch the news. I read during commercials. Bella plays the mahjong game on her Kindle.
In our silences, no one could measure whether anything has changed.
We don’t know if the drugs from the trial have any effect. They could be placebos.
Alzheimer’s is complicated, and I doubt it will ever be treated with just a pill or a shot.
But taking the pills each morning, throwing away the foil wrapper and filling out the daily log is part of our routine now.
We like our routine, because it gives us each time to do things we enjoy and also to spend hours together, not necessarily speaking but sitting with the heightened awareness of each other’s presence that people have when they are saying goodbye.
Will Doolittle is projects editor at The Post-Star. He may be reached at firstname.lastname@example.org and followed on his blog, I think not, and on Twitter at @trafficstatic.