‘Not Knowing’ You’re Ill Breeds Conflict For Alzheimer’s Patients And Their Families
“Hello!” Squeals Drea Lake as she enters her husband Tyrone’s room. They have been married for more than 50 years; Tyrone has had Alzheimer’s since 2002. He recently moved into a nursing home in Seattle, where Drea visits him 5 days a week.
“Do you want your music?” She coos. “How about Kool and the Gang?”
Ty is bedridden now. Even though he doesn’t talk much, they laugh together as Drea dances around the bed to the sounds of “Celebration.” Their devotion is palpable. But Drea says the onset of Ty’s dementia almost ruined their marriage. It started with little things: they’d have family members over for dinner, and share some chicken together. Then, the next day, Drea remembers, “He would get really angry, because he swore somebody was eating his chicken. And I would just stand there and go ‘What in the hell is going on here?’”
Alzheimer’s disease affects more than 5 million people in the US. But fewer than half of them know they have any disease at all. Even after an Alzheimer’s diagnosis, ‘not knowing’ you are losing your memory is one of the disease’s hallmarks.
As Drea later discovered in old performance evaluations, Ty’s work suffered until he retired in 2005. “Even a friend of his, who works with him, wrote step-by-step-by-step: how to turn on the computer, how to respond to emails.”
At home, he bought hundreds of knives and hid them around the house. He started hoarding to the point that they could barely open their bedroom door. Every time Drea suggested his memory was slipping, he blew up. But neither of them connected the dots.
“I thought he was just being nasty, typical male,” she says, laughing. “I wanted to get a divorce. I was tired of this behavior that I didn’t understand.”
When Drea went through cancer treatment, she spent a month in the hospital. Ty never came to visit. At one point, she fell into a coma. When she recovered, the doctor asked, “Is your husband working with a full deck?
“Because I called him and told him that you might not make it, and he just said, ‘Thank you so much for calling, let me know if there’s anything I can do,’ and hung up.”
Even when Ty was finally diagnosed, he himself was still totally unaware of his memory problems. One day, he attacked Drea for trying to get him to eat lunch. When she called to get him admitted to the Veteran’s Affairs hospital, the ambulance service took him to jail instead.
Karin Taifour, a geriatric mental health specialist in Seattle, says “It’s usually a crisis that necessitates some outside involvement.”
Taifour says our egos can create a kind of blind spot for memory loss. “So lots of people when they have dementia, they think that people are stealing things from them,” she explains. “And if you think about it, it’s a lot easier for your ego to accept that someone is taking things from you than it is to think, ‘I’m losing my mind.’”
Sandra Weintraub, a psychiatrist at Northwestern University’s Alzheimer’s Disease Center, compares the brain’s decline with Alzheimer’s to a lamp that flickers on and off because of bad wiring.
“Think of the brain as a bunch of wires that are going faulty,” Weintraub says. “Well, sometimes those wires will connect and everything’s fine, and the spouse will think, ‘Oh my god, I’m losing my mind,’ because if you take everything at face value, you’ll be very misled.
Once Drea Lake found out the source of Ty’s problems, she says she felt guilty about the resentment that had built up between them. “If I had known this was the onset of dementia, I probably would have gone to the doctor with him, and I would have said, ‘He just flares up. He gets all violent-acting. What’s going on here?’ It would have been different.”
There’s still no cure for Alzheimer’s, but Weintraub says early diagnosis is still crucial: researchers are learning that we may be able minimize Alzheimer’s symptoms if we catch it soon enough. And even as Alzheimer’s progresses, an accurate diagnosis can make for much better quality of life.