Joe Cohan enjoys many of the same activities most retired men his age do: He plays tennis and bridge. He works in the yard and volunteers for Dignity Health Hospice at Marian Regional Medical Center. This fall, he wants to start walking dogs around his neighborhood.
Joe also has Alzheimer’s.
“The condition came on about three years ago and I had no idea what it was,” he told the Sun in a recent phone interview using voice-recognition technology and gentle coaching from his wife, Judith Chumlea-Cohan.
On a scale from one to seven—one being normal and seven being severe Alzheimer’s—Joe is a four.
“It may have gone down to a five. I’m not sure,” he said.
This means he has mild to moderate Alzheimer’s disease.
“I forget most everything I hear,” he explained. “I forget names. I’ll forget something I said 30 seconds before.”
When this happens, Joe, who is also hard of hearing, will ask people, “Can you say that again and slower?”
And yet he can still play bridge, though he and his teammates usually have to simplify things a bit.
“I can’t do—I can’t think of the word. What’s it called when one person calls something to the other and they have an agreement?” Joe asked.
To which Judith replied, “I think you’re talking about conventions, Joe.”
This is how things tend to go in the Chumlea-Cohan household.
“She guides me in many ways,” Joe said. “She helps me with everything. She’s amazing, truly.”
Adjusting to the disease has been difficult for the couple. Prior to his retirement, Joe enjoyed a long career in medicine, first as an emergency room doctor and then as a general practitioner.
“If you ask me something about medicine, I can’t remember anymore. I know the nose and the toes, but anything about the internal body, I can’t remember,” he said. “That was something that just disappeared from my mind.”
He admitted to having thoughts of suicide when he first received his diagnosis, but he and Judith got through the dark times together, and they continue to persevere—one day at a time.
“I have a lot of things that I like to do,” Joe said. “I wasn’t about to give up my life.”
Staying active, he said, makes him feel “like a human being, not handicapped.”
He knows some day he won’t be able to do much anymore—he said, “The things I have to give up are nibbling away at me”—but he doesn’t spend time worrying about it.
“I live in the moment,” he said.
Judith’s perspective as a caregiver has also helped Joe stay positive.
“It’s been fascinating. It’s not easy,” she said of watching her husband live with the disease. “It’s not predictable; plans don’t always work out. They can change from minute to minute. But I’m fortunate that I’m a seeker. That’s my nature.”
To better understand what Joe was going through, Judith started researching the disease and she joined the Alzheimer’s Association for support. She and Joe also participate in a study conducted by Veterans Affairs and UCLA Medical Center.
Every six months, Joe and Judith take extensive written questionnaires. Judith said they’re tested separately so the doctors can get the patient’s view and the partner’s view of what’s happening. The doctors use the questionnaires and digital brain scans to evaluate Joe’s decline.
Judith said she and her husband decided to speak with the Sun because they want people to know that having Alzheimer’s “isn’t the end of the world.”
“Alzheimer’s is still being shunned,” she said. “People are still really nervous about saying there’s dementia in the family or ‘My loved one has dementia’ or ‘I have dementia.’ But life can still be very productive and satisfying.”
According to the Alzheimer’s Association, Alzheimer’s is the sixth leading cause of death among seniors. It’s estimated that one in nine people age 65 or older is diagnosed with the disease, but it can begin as early as 40 or even 30 years old.
Judith said with the Baby Boomers hitting retirement, Alzheimer’s is predicted to be “a huge drain” on the economy.
And while there’s no cure for the disease, as Joe said, “It could come along at any time.”
Managing Editor Amy Asman had a loved one with dementia. Share your stories with her at aasman@santamariasun.com.
This article appears in Sep 26 – Oct 3, 2013.
