Another Perspective of Alzheimer’s

How one couple finds joy inside the disease.
By Ell Hawley

It takes an hour for Stan to get ready in the morning. As he stands, his wife, Deb, shaves him. The electric razor is new, and they’re still getting used to it. She’ll help him bathe, dress, eat breakfast, and do other things. When they’re ready, Deb will drive Stan five minutes from their home to the Alzheimer’s Disease Association of Kern County, where Stan will participate in the Adult Day Services program from 9:30 a.m. until 3:30 p.m. This is the face of Posterior Cortical Atrophy (PCA), a rare form of Alzheimer’s disease. PCA, simply put, is when the cortex (the outer brain layer) in the back of the head breaks down, resulting in permanent neurological damage.

 

The back of our brain is where visual information is understood. To give some relevance to the impact of the disease on a person, think about some of the information that’s processed there, according to the Alzheimer’s Association: reading, perceiving multiple objects, using common tools, knowing the difference between a moving thing and a stationary thing, orientation, and more. Memory is not usually affected, but it is sometimes when the disease is severe.

 

Stan was diagnosed two and a half years ago, when they lived in Colorado. He was having trouble with his eyesight, and eye doctors performed eye surgery, presumably to treat degenerative eye disease. After the surgeries, Stan couldn’t read. It’s common for PCA to be misdiagnosed at first. After further tests, Stan and Deb sat down to meet with the doctor. “You know it’s bad news when the social worker comes in with the doctor to give the diagnosis,” Deb tells me. “It’s a very final diagnosis,” she adds.

 

Describing that first day at the center, Stan says, “There’s a lot of old people there.” That (and other things) overwhelmed him. But after that first day, he told Deb, “We’re gonna do this.” After his diagnosis, they decided together that they’d make the disease more fun. Going there three times a week has made Stan think about himself and what he needs to do. Many speak Spanish at the center. Stan doesn’t. He has one goal there—to get his peers to smile. “I get smiles from lots of them,” he proudly says. One day at the center at meal time, Stan noticed a guy who was worse off than him. “He couldn’t cut his food at all, and he couldn’t speak. The staff hadn’t gotten to the man yet, and he’d been waiting a while. So I went over to him.” The man gestured towards his food. So Stan did the best he could and started to feed him. This is just one example of the types of things Stan’s been doing to spread light among his peers at the center.

 

Before the PCA diagnosis, Stan was the president of a bank. Deb was (and is) an interior designer. They lived in the Colorado mountains, a three-hour drive from Denver, across two passes and through a tunnel. Twelve years ago, they were impressed to buy a house in Bakersfield, California, as a second home. They ended up renting it out for many of those years. Little did they know how important that house would be in their lives. It’s a five-minute drive from the Alzheimer’s care center, of which there are not many in America. Stan always had a dream of living in California. “Now I can,” he says.

 

The things that bring Stan joy now are when their adult kids call, seeing pictures of their kids and grandchildren, and walking. Deb adds, “Today’s a great day because Stan’s still standing and I can still shave him. He’s not in a wheelchair today. I have to think about what he can do and not what he can’t.” Their light and intentional actions of making PCA fun are not dampened by the untreatable finality of the disease. “I’m going to have another mission after I leave this life,” Stan tells me with conviction.

 

For now, this is their mission. “Stan always had a great sense of humor,” Deb explains. “We still laugh, but at different things now.” Sometimes words pop out of Stan’s mouth that are unexpected. “That’s embarrassing,” he says. He gets frustrated when he wants to say a word but can’t find it in his brain. “When I do get frustrated, I apologize. I always say sorry when I’ve been angry with her,” Stan says. Deb nods in agreement.

 

The joy between this couple, married forty-seven years, is evident. They finish each other’s sentences. Deb says that a few things that bring her joy are climbing in beside her husband at night and knowing he’s still there, the Gospel, and sitting together at home. Deb likes to read out loud to Stan, since he used to be a voracious reader. Recently Stan got Deb the “best birthday present,” he tells me. It’s a handicap parking pass. “She’s the designated driver.” He smiles broadly with exuberant light.

Writer bio:
Ell Hawley is the author of four published science-fiction novels and is currently on a trek crisscrossing America, interviewing ordinary people who create more light in America. You can nominate someone for her to interview and also follow her blog at EllsTrek.com.

Sources:

Sebastian J Crutch, Manja Lehmann, Jonathan M Schott, Gil D Rabinovici, Martin N Rossor, and Nick C Fox, “Posterior Cortical Atrophy,” The Lancet: Neurology 11, no. 2 (February 2012): 170–178, https://doi.org/10.1016/S1474-4422(11)70289-7.

 

The website for the Alzheimer’s Association, “Posterior Cortical Atrophy,” accessed November 1, 2019, https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/posterior-cortical-atrophy.
 

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When I was little (after realizing I could never grow up to be a professional race-car driver), I decided I’d grow up to be a writer. This life trek is a realization of that dream.

 

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