To Help Others, One Couple Talks About Life With Early-Onset Alzheimer's
When Bella Doolittle heard her diagnosis of early-onset Alzheimer's last February, she sat in the car outside the doctor's office and cried. "He said, 'Well, we figured out what's going on with you and this is it.' And I'm like, 'No, it's not.' "
Doolittle's husband, Will Doolittle, sits next to her on the couch, recalling how she grilled the doctor. "You asked, 'How long does this take? How long do I have?' And he said, 'On average, eight years.' That really upset you."
"That really pissed me off," Bella says, laughing now at the memory. "Absolutely. I mean, I was pretty devastated. I'm like, eight years? I'm not even wrinkly yet."
Researchers say as many as 200,000 Americans experience Alzheimer's younger than the typical age of 65, developing dementia-like symptoms in their 40s and 50s.
For people like Bella, the diagnosis can feel overwhelming and bring feelings of shame. They fear losing memories, careers, and parts of their identity.
Bella is a young-looking 59, wearing a T-shirt and a mop of red hair. On the day NPR visited her home in Glens Falls in upstate New York, where the couple raised four kids, Bella was in the kitchen making her signature Christmas gift. "It's homemade Kahlúa, the best you will ever drink," she says. "I have my vanilla beans imported from Madagascar."
Bella Doolittle remembers how she first became aware that something was wrong. For a while before the diagnosis, she just felt "off." Her brain would get fuzzy and then it got worse.
"I got lost a couple of times in neighborhoods that I'm familiar with," she recalls. "It was dark but I thought to myself, that should not have put me out there," Bella recalls.
After that, the Doolittles started traveling to Albany, about an hour away, for test after test. Her neurologist finally named what Bella has taken to calling "the dreaded disease."
She and Will, a local newspaper columnist, decided that they would talk and write publicly about her illness to break down some of the stigma of Alzheimer's. Bella wanted to show that she can be productive and hold onto the best parts of herself, at least for awhile.
The Doolittles launched a podcast together called Alzheimer's Chronicles. In their first broadcast in November, Will laid out the challenges that younger families experience with Alzheimer's.
"We're facing a lot of practical questions about finances and wills and whether Bella will keep working or retire," he says in the first episode of the podcast. "And we're facing personal questions as our relationship is challenged by this. And as we react to the changes it brings." After a pause, he adds, "It's a journey."
Bella says the decision to talk publicly about her illness wasn't hard. "I don't feel like it's something that's like some bad secret; it's not something I brought on myself. But I know that a lot of people who have this are afraid for other people to know."
One of the hardest parts of the Doolittles' journey is the uncertainty. Other doctors have told Bella that that eight-year timeline isn't certain at all. There's a lot of variation in the way this disease progresses.
But for Bella and Will, things are already moving frighteningly fast. In the first podcast, they debate whether she needs to leave her job at a local community college.
A month later, the decision's been made, and we hear she's not happy. "It's not my condition's fault," Bella says during the third broadcast. "Society isn't ready yet to acknowledge that just because you're not perfect, you're not as useful." She says she's convinced, with a little help and support, she could have kept working.
But as she talks about her future, Bella gets confused and loses the timeline.
"I stayed for a couple more years and I recently retired," she says.
Will leans forward and says gently, "You didn't stay for a couple more years, you stayed for 10 more months."
"That was a couple years ago," Bella insists, but Will shakes his head.
"No it wasn't, hon. That was last spring."
Bella laughed ruefully and said she accepts Will's expanding role in their marriage. "I appreciate it. I mean, there's nothing he can do that will make me angry."
One irony, painful and bittersweet, is that Bella and Will are experiencing a kind of honeymoon during this crisis, a new kind of romance — partly because Bella's personality is already different. They talk about it on the podcast. "You're a little more goofy, a little more upbeat and jolly," Will says.
Bella agrees, telling NPR that one side-effect of the disease is that she's less of "a boss," less a "type-A perfectionist," than she used to be. A lot of the time, she actually feels happier. "I should be depressed and walking around like the world is about to end, because it is," she says, laughing and shaking her head.
But even this change comes with a sense of loss. Will misses the old Bella, the fierce, hard-driving woman who used to share his life. "I mean, you know, we fell in love. We've had a long marriage. It's not like I wanted parts of her to fade away. I'm not saying I exactly miss our fights, but you know, that's a part of who we were as a couple. And that's not there now. It just really isn't."
So the Doolittles are making all kinds of adjustments as they try to figure out where this goes next. Will has taken over managing their finances. A lot of that used to be Bella's job. Early-onset Alzheimer's is a complicated condition, so Bella will eventually require special care. In the meantime, now that she's not working, she's arranging to take art classes and thinking about trying to start a home business.
On the podcast, she sounds committed to managing, maintaining some control, even as her mind changes. "I feel like I can go with the flow, but if the flow isn't going the way I want it to go, I'm going to change that direction," she insists.
"So that's an optimistic way of looking at it," Will responds.
"Yeah, it is optimistic," she agrees.
Bella and Will say they plan to continue the podcast as long as possible even as her Alzheimer's advances, talking candidly about this chapter of their marriage, about their love, and about the complexities of this disease, the things they're gaining and the things that are slipping away.
"It doesn't stop me from doing life," Bella says. "The one thing that I really dislike about the disease is that I'm afraid that I'm not going to have as much time with my husband as I would like. I want us to be really old together. But if I die early, he'll be on his own and I feel bad about that." Copyright 2018 NCPR. To see more, visit NCPR.