Life is doing, not getting-done

Armao's podcast focuses on Alzheimer's

Oct 06, 2024

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Every activity gets interrupted, including this one. It’s 4:10 a.m. now, but before 6, I’ll hear Bella stirring and padding out of the bedroom, and I’ll come out of the office and put my arms around her.

“Do you want to go back to bed?” I’ll say.

“Yeah,” she’ll say, and I’ll pull the covers back and she’ll lie down on the edge of the mattress.

“Shove in a little,” I’ll say, patting her, and she’ll hitch herself in an inch.

I’ll rub her back.

“I’ll be in the office writing. I’ll be right here,” I’ll say.

Then she’ll drift in and out, sometimes getting up three or four times in a row, sometimes sleeping for half an hour.

“I’m going to do a little more writing, then I’ll come in and lie down with you and read my book, OK?” I’ll say.

“OK,” she’ll say.

We have no schedule. We start and stop unpredictably. A couple of mornings ago, as Bella went in and out of the house — out to sit on the chairs on the lawn, then back in to sit at the dining room table with her chin in her hand, eyes closed — I gave in for a minute to hopelessness and curled up on the couch with my head on a pillow.

I take the fight against Alzheimer’s personally — not trying to beat it, because I know Bella won’t get better, but trying to make her days and mine as happy and easy as possible.

I fail a lot, but now and then, I get a smile.

“Why are you being so nice to me?” she says.

Sometimes, her words fall apart mid-sentence.

“That’s interesting,” I responded recently, and Bella shot me a sharp look.

“What are you talking about?” she said.

She knew what she had said was unintelligible.

She becomes aware her brain is shutting down. She fights back by going out alone on her walks, and during them, she imagines she is doing battle with mean girls, like those from her childhood, who kick her and spit on her.

“Do you want to leave me?” she asked last week in a lucid moment. “Because I can’t do anything.”

“Of course not. I am always going to be with you. I don’t want to leave you. I enjoy our life together,” I said.

I used to find satisfaction in finishing one task after another, following a checklist in my head.

Mow the lawn. Pay the bills. Help the kids apply to college. Write this week’s column. Read a book. Play fetch. Get a good night’s sleep.

Alzheimer’s is an antidote to that. Everything gets partially done or not done at all. We float through the days, pulled around by our moods.

I’m yanking up the hundreds of flowers that grew in yellow waves in our gardens this summer but are dead now. Bella and I will be sitting in our chairs on the lawn, and I’ll lay down my phone and put on gloves and spend a few minutes tugging the tall, fibrous stems out of the ground.

Since I stop after a couple of dozen flowers, before I get scratchy and sweaty, I may not get to all of them before winter. In spring, they’ll come out easier.

What was a riot of color a few weeks ago is now a mess, crying to be cleaned up.

On the brink

You may have heard Rosemary Armao, an investigative journalist and SUNY Albany professor, on WAMC’s Roundtable, where she has been a frequent guest. Armao has been taking an extended break from the Roundtable and other activities to take care of her mother, who has dementia, but she has been doing a podcast called An Armao on the Brink. Recently, she had on me and Ruth Fish, a nurse practitioner who lives in Glens Falls and worked at the Glens Falls Hospital’s Center of Excellence for Alzheimer’s Disease. Ruth saw Bella and me for years.

Click here to listen.

Crazy-making

Fear is the fuel of autocracies, and our most fundamental fear is of nature — the floods and storms and drought and cold that can wipe us out without sympathy. So it makes sense to me that, as the natural world becomes even more dangerous and unpredictable because of climate change, our behavior becomes even more irrational, and, in our fear, we turn to the false security of strongmen.

It’s not a coincidence that the hottest years on record, with years-long droughts, enormous storms and wildfires consuming millions of acres, are being accompanied by a worldwide turn toward autocracy. As we especially see with Donald Trump, leadership in a fearful environment becomes not about character or ability but denial, scapegoating and false promises.

I can fix it, everything is going to be great the way it used to be, your life will be wonderful — Trump excels at claptrap like this, embraced by too many of us, who are running scared from reality.

Ken

I don’t quite know what to say about Ken Tingley, who started this site, and two years ago, asked me to join him in the undertaking. His wife, Gillian, died in August, as his readers know from the lovely tributes he has written. Readers may also have noticed that Ken has not skipped a single column during this time but has continued with three or four a week.

We used to joke about Ken’s organizational skills when he was the editor of the Post-Star and our boss. In a field in which being organized means you know your notes are somewhere in the piles on your desk, Ken knew where every document in his office was located. He counted his own and everyone else’s stories and sent out monthly reports on productiveness. He gives me monthly reports of our stats for this site, too, as we try to grow our readership.

He wrote about Gillian, capturing the delight she took in life, the fun she and Ken and their son, Joseph, had together over the years, and her perseverance in the face of cancer.

He doesn’t dwell on what it was like for him during the 13 years that Gillian had cancer — the trips to hospitals and doctor’s offices, the worry, the remissions and returns of the disease.

I saw Ken on Thursday, just back from New Orleans, where he had been helping Joseph move from one place to another in the city. Pete Rose had died while Ken was out of town, so that gave him a column, he said.

His strategy is to work himself into exhaustion each day, he said. Is that a change? I thought to myself.

It didn’t surprise me when Ken kept putting up columns as he was caring for Gillian in the last couple of weeks of her life and after she died. Some of us thrash around in our struggles. Ken keeps going.