With Alzheimer's, acting normal isn't enough

Caregivers have to learn to change

If my legs had been strong, I could have sprinted across the parking lot and caught Bella before she turned onto Southwestern and drove away.

But I’m walking with a cane these days, and all I could do was scream in frustration and fear as I watched the car disappear, then drag my cartful of groceries back into the Hannaford, where I sat on a bench in the entryway and rubbed my forehead.

I hadn’t made sure she had her phone.

I checked the app for the tracker on the dog’s collar (the dog was in the back of the car), but it hadn’t updated for a few days, because I hadn’t put it on its charger.

I called our daughter Zo.

“I am so sorry, Zo,” I started.

“What happened, Dad?”

“I left your mom in the car, and she drove away.”

Bella and Ringo wait in the car while I run errands, because Bella doesn’t want to leave Ringo alone. So I run (or limp, these days) into the grocery or the pet store or the bank but leave the car running, so they stay warm.

“I’m going in for just a few minutes. Don’t go anywhere. Don’t take off and leave me behind,” I say.

Bella smiles.

“I’m not going anywhere,” she says.

Her license hasn’t expired yet, but she should not drive, because she has Alzheimer’s.

But Alzheimer’s can cause her to forget her immediate circumstances, so a sort of reset occurs. At that point, she could decide, since she was alone in the car at the store, to switch over to the driver’s side and go home.

I understood the risk, which meant that now, as I sat on the bench while she was out on the road, anything that happened was on me.

Zo couldn’t find her for at least 10 minutes. I had Glens Falls Police on the phone when Zo called to say she had spotted the car.

“You can’t do this again, Dad,” she said the next day. “I couldn’t sleep last night.”

I try to normalize our lives, but that can be an excuse for not accepting reality. Alzheimer’s requires changes that, as the caregiver, I have to make. 

Nonchalance isn’t an option, because behavior that seems inconsequential, like having Bella wait in the car for 15 minutes, can have a tragic downside.

At home, lingering over toast and coffee, we act like nothing has changed. We talk about the news. We pet the dog and make jokes.

But what about the car keys that I leave in my jacket pocket or toss on the table? Bella sometimes loses track of me in the house — “where were you?” she’ll say when I reappear — and she could grab the keys in one of those moments and go in search of me in the car.

It’s not likely, but it’s possible. It would only take a minute.

I don’t want to have to hide the keys.

I should hide the keys.

Readings

“Trust” by Herman Diaz, published 2022

“Trust” is a book that requires some commitment from the reader. I don’t want to reveal its secrets, but the cleverness of its structure yields insights that increase the further you read. The book is split into four sections, and Diaz has the confidence, which few authors would, to wait until the last two sections — more than halfway through the book — to begin unwrapping the heart of the story and revealing what is really going on. 

I haven’t been a fan of the handful of contemporary literary works I’ve read. Two, in particular, come to mind — “The Flamethrowers” by Rachel Kushner, a novel, and “The Night of the Gun” by David Carr, a memoir — but “Trust” makes me think I should give them another chance. The first section of the book is well-written but feels shallow. I felt like I was watching the characters from a distance. But by the end, I was drawn so close that it felt claustrophobic — just me in the room and inside the head of a woman who was dying. 

If you pick up “Trust,” have faith — don’t put it down after 100 pages, because the end illuminates the beginning in a way that is deeply satisfying.