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Column: Those touched by the disease know that every day is Alzheimer’s Awareness Day

For the Valley News
Published: 9/11/2021 10:20:04 PM
Modified: 9/11/2021 10:20:05 PM

Depending on your googling tactics, we’re either in or about to be in Alzheimer’s Awareness Month. In 1983, President Ronald Regan designated November to Alzheimer’s awareness, while Alzheimer’s Disease International recognizes September as World’s Alzheimer’s Month, and Sept. 21 as World Alzheimer’s Day.

During the fall months, various organizations encourage people to join organized walks or events (like the Upper Valley Walk to End Alzheimer’s), and wear purple in efforts to raise both awareness of Alzheimer’s disease and funds to combat it.

If you have a loved one with Alzheimer’s, your calendar is a little different. Every day is Alzheimer’s Awareness Day, and that can be its own challenge.

For many of us touched by Alzheimer’s, the question, “Am I next?” is the haunting soundtrack that constantly plays behind every discussion, every observation, every moment spent dealing with the disease through our suffering loved one. “Am I next?” brings flashes of panic when you forget why you went into a room, lose your train of thought in a conversation, contemplate speaking in front of groups, forget a question, a name, a grocery list. It’s what turns a run-of-the-mill restless night into a mind-bending apocalyptic trip into the psyche.

This refrain plays on a relentless loop, filling the void created by the lack of agency around evading or combating the disease. With cancer and many other diseases, you can greatly reduce your risk by changing your lifestyle, while early detection and treatment can significantly improve your outcomes.

Not so with Alzheimer’s, which has no known cure. Even the most advanced treatments, at best, somewhat slow the disease’s progress. Alzheimer’s is a one-way ticket on the trip nobody wants to take.

If I were a dive-in-and-attack-the-problem kind of person, I would combat this “Am I next?” anxiety by seeking all the available science. I’d take a genetic test to find out if I had the APOE-e4 gene, associated with increased Alzheimer’s risk. I would eagerly await the arrival of the new blood test that will be able to look for Alzheimer’s 20 years before the onset of the disease.

In the meantime, I’d research what all the other dive-in-and-attack kind of people are doing to stave off the disease and scrutinize the data around plant-based vs. grain-free vs. paleo eating, the advocates of which all make claims about that diet’s ability to stave off Alzheimer’s.

But what if I don’t want to uncover a devastating diagnosis in my future? Is it better to know, and live with the fear and dread, or to live every day like you do have the gene and you simply need to enjoy and exploit every cogent moment you have? There’s a solid case for this Hakuna Matata approach.

Before my mother succumbed to Alzheimer’s, I found myself all too often lapsing into a third approach, unsettling because it grew from a shameful seed in the primitive ZIP code of my own brain. I was trying to blame my Mom for this disease. I found myself looking for what she might have done differently to prevent this, as if her flaws might make my vulnerability less real.

I judged other people this way too, tingeing what could have been pure compassion for an Alzheimer’s diagnosis with some trace of justification for why I was not equally at risk.

The threat was closest to home, however, with my mom, co-author of my genetic code. I put her life under a microscope, scrutinizing all the things she might have done differently, rather than considering that the disease and these behaviors posed a chicken-and-egg dilemma.

She had stopped exercising, though perhaps only after she grew nervous about her ability to move in space. I grilled her on why she dropped out of book club, though she may have been struggling to follow conversations.

And then there was her diet — the way she’d eat nothing all day then graze through all her calories on snack foods at night, taking her blood sugar for a wild ride. That likely evolved from her difficulties with planning, procuring and preparing healthy meals.

The big violation — in my mind, the thing that had invited her cognitive slip — was that she abdicated all decision-making to my dad, her husband of 59 years. She rarely asserted her preference or opinion on anything, and that, I assured myself, had started before Alzheimer’s set in. Never mind that her precious gift to our family and friends was her way of facilitating rather than dominating conversations.

Instead of accepting these behaviors, I matched them against my own self-assessment. I’ve always exercised. Check. I am engaged in my book club, and in phone interviews for work. Check. I eat healthful food at regular (even too regular) intervals. Check. I probably drink more than she ever did, and don’t get enough sleep. Uncheck, uncheck. But, I have an edgy assertiveness that assures my complaints are no secret. Double check.

This continual inventory and reconciliation did nothing to alleviate the incessant worry, or help me enjoy this state of not having Alzheimer’s.

As time went by, I’d see that Alzheimer’s is undiscriminating in its victims. It strikes the physically fit and the laggards; the academics and the artists; the sweet and the salty; the gregarious and the introverted; the bossy and the compliant.

Worse than this betrayal to my mother, the energy I put into these analyses, even momentarily, was energy I could have directed toward accepting her as she was, honoring the grace with which she accepted her circumstance and diminishing capabilities, and simply loving her.

As a friend in the Alzheimer’s community so aptly reminded me, “People with Alzheimer’s lose everything except the ability to give and receive love.”

We don’t get do-overs, but we do get opportunities to pay it forward. When Alzheimer’s awareness events roll around, and advancements in treatment or testing become available, I can be there, with my time, my energy, my checkbook, my genetic material — whatever will help. I can be all-in, to honor my mom, and also to support the people touched by the disease, some of whom might be stuck in the “Am I next?” loop.

My hope, for them, and for me, is that we can spend less time worrying about what’s coming, and more time enjoying what we’ve got.

Edie Thys Morgan, of Etna, is a writer and author. This piece was adapted from an essay to be included in a forthcoming collection, Losing the Mothership. To join or support the Upper Valley Walk to End Alzheimer’s, scheduled for Oct. 2, visit https://act.alz.org/uppervalley.




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