Staying In The Present: Couple Navigates Early-Onset Alzheimer's Diagnosis
Arizona has long been a destination for older adults, with its pristine retirement communities and warm climate. But aging in America isn't what it used to be. The issue isn’t going away. We have to talk about it. This is Part IX of "The State of Aging in the Valley," a series that explores the reality of an aging society.
Most people think of Alzheimer’s as a disease of old age. But the Alzheimer’s Association estimates there are at least 200,000 Americans under 65 living with it — including one Mesa couple, learning how to navigate life after a devastating diagnosis.
Green grass, bushes, pots of flowers, a sprinkling of ceramic Buddhas and gnomes. Jean Norris-Wilhelm can spend hours in her Mesa backyard.
“It’s just wonderful, and you can hear the different kinds of birds that come in,” she said, blinking in the sun, “and I never paid attention to it before.”
Before the diagnosis, that is. Jean found out she had early-onset Alzheimer’s last year, when she was just 55. The disease usually strikes older people, but regardless of when someone gets it, the symptoms can include memory loss, disorientation and problems with language, which worsen over time.
Scientists and doctors still don’t know exactly why this happens. Talking to Jean, sometimes you hardly notice anything wrong. Then you do.
“So that, I got, that’s my, um, not lime … what do you call it?” Jean said, searching for the right word. “Lime?”
“Tree,” answered Kathy, Jean’s wife and partner of nearly 21 years.
“Yeah,” Jean went on. “The lime tree.”
Kathy is used to helping out with what they call a “blockage,” like a blank spot in Jean’s mind that obscures the word she wants. Kathy said these blockages began a few years before the diagnosis, around the same time Jean started misplacing things.
“It started with her glasses. It would be one thing. She couldn’t find her glasses,” Kathy said. “Then it became her cellphone.”
Then it was her keys, then her shoes. Kathy said they were both frustrated.
“What is happening?” Kathy said, looking back. “We could see kind of the wheels falling off, but we didn’t really know what was causing it.”
Then began a long process of doctors ruling out brain tumors and aneurysms. Jean, who deeply loved being a math teacher for nearly 20 years, even left her job.
When a PET scan finally revealed the truth, Kathy was paralyzed by fear.
“My legs were like logs,” she said. “I mean, like, what do you do with that information? What are we going to do? What do you plan for?”
But Jean, even though she may have cried a bit in that heart drop of a moment, she didn’t feel sorry for herself.
“No, no. I don’t do that,” she said. “I don’t think I’ve ever done that.”
Kathy remembers Jean’s doctor asking her if Jean has always been this optimistic and positive.
“And I said, ‘Absolutely,’” Kathy said. “Absolutely.”
In the year since the diagnosis, Jean and Kathy have made a point not to hide away. They’ve traveled, gotten tattoos, and raised thousands of dollars for research.
What’s helped the most?
“Talking about it,” Kathy said. “Really talking about it.”
That means talking together about their fears, their hopes, Kathy explained, just as they always have. She said this journey has also been a giant lesson in something they both already knew: you have to stay present.
Just after the diagnosis Kathy found herself getting lost in the “what-ifs” that could make up Jean’s future.
“I was already grieving that she was gone, and I’m like, ‘What are you doing? She’s still here,’” Kathy said.
Kathy does still grieve sometimes, but said she’s trying to focus on what’s left, not what’s lost. And what’s left are so many things she loves about Jean — her tenacity, her upbeat nature. Jean can still drive and do chores. And they still cook together almost every night. Tonight, as Kathy tore mozzarella for a squash flatbread pizza, Jean chopped tomatoes.
“See? I don’t even need you!” Jean joked, after asking her wife which direction to cut the veggies.
Jean used to be the cook around here, but she’s happy as the sous chef. There’s one phrase she’s been using over and over since her diagnosis.
“It is what it is,” she said, before stumbling over the phrase. “It is … it is. You know, I’m going to do the best I can.”
One day, Jean may not be able to live at home. Her life expectancy is not certain, though the average is around 10 years from diagnosis. There is no cure.
Kathy says they’re preparing as much as possible.
“But we also try to live today,” she said. “And I think that’s the best philosophy, because when you look too far down the road, it can be scary, and I don’t want to be there. I don’t want to worry about that.”
Where they both want to be is exactly where they are: in their warm kitchen filled with years of love notes written on Post-Its and happy pictures of them on the fridge. Together.