Alzheimer's imposes silence

Going to the subtropics without moving

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I write about my own experience when it comes to Alzheimer’s disease, justifying this as a way to offer support to other caregivers and inform people who don’t know about the disease.

But another human being is central to this experience who can’t tell her story. She is the one fighting an invisible and implacable enemy. She is the one traveling deeper each day into fear and confusion.

Now, frequently, she’s unable to finish sentences she started.

“I lost it,” she’ll say, waving her hand.

Our grown-up kids were in town last Sunday. We went to Farmacy for brunch, and we passed a stranger on the sidewalk who was greeting a friend.

“How are you?” the woman said, and Bella, overhearing, said, “It’s so good to see you!” and stepped in to accept the hug meant for the friend.

All she has left are her instant reactions — affection or fear, pleasure or weariness.

Even her fierce stubbornness has been eroded by the disease, so it’s more like the pleading of a toddler now. 

When we met, she was working three part-time jobs, caring for two young kids and sleeping a few hours a night.

After we got together, she drove an hour each way from Malone to Saranac Lake to work as a news photographer; then, when we moved to Glens Falls, walked from our house near downtown to Olive Garden to work; then did overnight shifts on weekends at a home for developmentally disabled adults in Warrensburg, while getting her undergraduate degree; then her master’s and teaching certificate.

After that, she drove back and forth to Ticonderoga to teach and work as the coordinator of the branch campus of North Country Community College.

She cooked like a magician, whipping up multiple meals at once, or a dozen lasagnas for one of our big parties.

She was the spark for our family and its heart. She was the one who said, “This is the way it has to be.”

I would advocate for our kids when they were young and needed help, but Bella would take over when force was required — her voice calm, her cheeks glowing red.

She remembers little if any of all that. She lives in the moment now, precariously, her uncertainty rising.

I get frustrated, exhausted, bored, irritable and sad — every day — but I understand why. I can divert myself, and I have a purpose — caring for her — that sustains me.

Bella wants to help. “What can I do?” she says, when I’m loading the dishwasher or cooking dinner or vacuuming a room or feeding the bunny.

Usually, I put her off, because she’ll stick the knives in the drawer with the Tupperware tops or pour the bunny’s food into the box with his litter.

So little of her is left to understand even a simple task, and yet there’s enough left to know something is wrong.

I recollect who she was, and remind her, and others, when I can. Bringing her to life through words — quirky, fierce, funny, stubborn and loving — soothes my grief.

The loss I feel in all its hard angles, she senses like a shadow, without understanding what is gone. I get to grieve. She gets silence.

Bella sits at a table in Kru Coffee earlier in the week.

Hello subtropics

My dad moved to the Gulf Coast of Florida about 30 years ago, and during the years he lived there, would regale me with stories about its subtropical climate.

After a day of high heat and humidity, he’d say, a thunderstorm would break out in the afternoon, cooling things down, but only for a few minutes. Once the rain stopped, the wet heat would return.

I never thought we’d experience weather like that here, but that’s what we got earlier this week as the temperature reached the 90s, with high humidity. Finally, the sodden atmosphere split open with thunder and rain and the temperature dropped about 10 degrees in two minutes.

We were parked between Aldi’s and Citizen’s Bank in Queensbury when the heavens opened.

Unfortunately, the heavenly reprieve from the heat lasted only for the few minutes that the rain fell.