One day, almost 30 years ago, my brother and I were painting the bedroom in the apartment in Saranac Lake where Bella and I lived with our two older kids. Bella had instructed us on the color — a lemony yellow — but when she came in to take a look at the half-painted room, she didn’t like it.
My brother and I laughed at the thought that we would start over with a different color — I think we’d had a beer or two — and locked her out of the room.
But it wasn’t long before I was repainting the room in another color of Bella’s choosing. Her will could not be denied for long, at least not by me.
Things are different now, on her side and mine.
She doesn’t see that she has changed, which is one of the strange things about Alzheimer’s. When you have cancer, you see and feel what is happening to you. It’s hard to note the transformation when your brain is being changed. Who Bella is now feels to her like who she has always been.
Bella wants me to tell her when I notice she is being “alzheimerish,” but I struggle with that. Sometimes, I tell her she’s repeating herself. But I don’t point out the subtle differences in the way she acts just about all the time — that she is more jolly and forgiving; that her affection for her pets, always strong, is now overflowing; that she is more likely to agree with me now, and when she disagrees, is more likely to shrug it off; that the side of her that is nurturing and easygoing has taken over, while the side that was tough and demanding is all but gone.
How much of these changes is the natural result of aging, in both of us? How much is because, all of a sudden, our lives are under a different deadline? How much is the disease affecting Bella’s mind and changing how she behaves?
I don’t know.
I don’t know — that is the mantra of this experience.
We don’t even know for certain that Bella has Alzheimer’s. The diagnosis was arrived at through cognitive tests, and it doesn’t feel definitive, especially not to her.
“I still don’t think I have this disease,” she says, sitting in her favorite chair in our family room, working on a mahjong puzzle on her iPad, dangling her arm down to pet the bunny.
If it is Alzheimer’s, it feels like the disease’s honeymoon phase, when even as it is taking away, what we have left is good.
We wonder how long we have, how long before things get worse. But if and when more changes happen, will they be “worse?” Or will we be able to find our connection still, despite the different circumstances? Will there be something deeper in what we share, because we will it, because we have to work for it?
We hope so. We don’t know.