Fresh Ideas: A new way to live with Alzheimer’s (part 2)

When last I wrote, I had begun summarizing an 11-page article in The New York Times about a 69-year-old nurse named Geri Taylor who in 2012 looked into her mirror and didn’t recognize herself. The article covers the years since that moment.

Geri was diagnosed as having mild stage Alzheimer’s, and it appears to me that despite the fact that she is gradually losing more cognitive functions, she has a lot to say about what it is like to have Alzheimer’s and how it is not the “end of the road.”

In fact, according to her husband, one of the unexpected results of Geri’s disease is that “we’re much more dedicated to being with each other.” They talk openly, don’t hold back on saying something “later”; they pursue and share their individual interests. If Geri gets down on herself, she tells her husband, “Let’s go to a movie.” This positive attitude is partly due to not keeping the disease hidden, Geri thinks. It has allowed her to develop strategies to compensate. If one doesn’t, she says, a person just “slowly passes into a state of disability.”

The symptoms that bother Geri most involve losing the sequence of steps in a process, and no longer having a sense of a clock in her head. She says she has no idea what she might be doing at 3:00 or how long it might take her to get dressed. She doesn’t like to shop for clothes anymore, either, because the choices are overwhelming.

So, what does Geri do to compensate? She relies on her iPhone’s calendar which she checks constantly to see who she wants to call, where she planned to go. She prepares, does research before she talks to or calls someone, making sure beforehand, for instance, that the friend she’s calling has a husband before she asks how he’s doing. She takes photos of places to help her not get lost, and photographs birds (as a hobby) because that requires “no words.” She does more housework which she sees as an “escape to simpler things.” And she sings. And, as far as forgetting, she says, “If you can’t remember something take your mind out of it, and let your feelings get to it. If you get angry and frustrated, that’s the worst cause you have this emotional interference.”

In the four years since initially diagnosed, Geri has done more than rely on her own pluck and positive attitude. Early on she joined CaringKind, a NYC organization that serves 15,000 Alzheimer’s sufferers a year. (There are 250,000 people in NYC diagnosed, but only a small fraction take advantage of the organization.) One of the small groups she joined, called Memory Works, plays word games for fun. For example, name all the words for foods that start with the letter M. Of the group, Geri says, “There’s nothing like being different with your own people.” She said it was like a party, “getting high on Alzheimer’s.” She also takes the drug Aricept, but only half a dose because of the disturbing dreams that resulted, and she was able to join a clinical trial for a potential new drug (results still unknown).

In the meantime, Geri recommends that if someone you know says he or she has Alzheimer’s, you ask, “What sort of symptoms are you experiencing?” and “How are you handling them?” and never forget, at any time you encounter that person to say, “I’m glad you’re here,” or “I’m your friend.”

To read part one, go here: https://www.nevadaappeal.com/news/opinion/21952785-113/fresh-ideas-a-new-way-to-live-with

Ursula Carlson, Ph.D., is professor emerita at Western Nevada College. A website, To Whom I May Concern, acts out plays telling early stage Alzheimer’s what life is like for them.