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Alzheimer's Reshapes The Lives Of A Family In New York

RACHEL MARTIN, HOST:

More than 16 million Americans care for loved ones diagnosed with Alzheimer's. It is a devastating illness that strains and changes relationships. This morning, we have a profile of a couple in upstate New York who have decided to talk openly about their experience with early-onset Alzheimer's and the ways the disease is redefining their marriage. North Country Public Radio's Brian Mann has the story.

BRIAN MANN, BYLINE: Bella Doolittle sits on the doorstep of her house in Glens Falls, N.Y., just north of Albany, feeding biscuits to her dog, Pepper.

BELLA DOOLITTLE: She has a boo-boo.

MANN: Does she? I see her limping.

B DOOLITTLE: Yeah. It's getting better.

MANN: Bella was in her mid-50s when she was diagnosed with Alzheimer's. That was two years ago, and the symptoms are advancing, with more memory loss and a new, painful anxiety.

B DOOLITTLE: Have you ever watched a really terrible horror movie where you know any moment now someone's going to get torn to pieces in a very evil, painful way?

MANN: Anxiety medication is helping, she says. These are the struggles and setbacks that Bella and Will Doolittle talk about in their podcast, the "Alzheimer's Chronicles." They say their life is getting harder.

WILL DOOLITTLE: What do you think, hon? I think it's been kind of a tough last six weeks.

B DOOLITTLE: It definitely has been a very tough period. I became suicidal almost. It was horrible.

W DOOLITTLE: Yeah.

B DOOLITTLE: It was, honey, was it not?

W DOOLITTLE: Yeah, no, you were in bad shape.

MANN: At times the podcasts are raw, vulnerable and intimate - recorded over their kitchen table. They pull back the curtain on Bella's illness, but they've also been increasingly open about the inner workings of their two-decade-long marriage. A good marriage, they say, that faces incredible, new strain.

W DOOLITTLE: So what about - you know, what about the situation between you and I?

B DOOLITTLE: Well, you're not, like, emotionally in touch with your feelings when it comes to me.

W DOOLITTLE: I think I am.

B DOOLITTLE: Well, you don't seem to pay very much attention to me. You know, you don't sit down and talk to me about things that, you know, are meaningful, you know. You don't.

MANN: Part of this is memory. Will says Bella just doesn't remember their conversations. Even their arguments fade away. But she also knows he's turning elsewhere for conversation, for connections to the world.

Their exchanges aren't all grim. There's a lot of fondness, a lot of humor. At one point in the podcast, Bella is exasperated with Will and decides her dog, Pepper, is also fed up.

B DOOLITTLE: Look at - Pepper's looking at you like, what the hell's the matter with you?

W DOOLITTLE: (Laughter).

B DOOLITTLE: Did you just see that look?

W DOOLITTLE: No.

B DOOLITTLE: Like, she was giving you the look like, Dad, what's the matter with you? (Laughter).

MANN: Two years after Bella's diagnosis, conversations on the podcast often sound pretty normal. They're a couple in late middle-age still trying to figure out how to talk to each other. They face a lot of uncertainty, but so do most people. But Will says he's afraid. Their lives and their relationship have moved into a chapter where he often doesn't know what to do.

W DOOLITTLE: There is a difficult balance that I have to try to strike of dealing with stuff and not treating Bella like a child, basically, not bossing her around all the time. And sometimes I do, you know. And sometimes I can feel that I am doing that, that I kind of get into that routine. And I'm used to it. And I'm - it's almost like having another kid, you know? And that's not - and Bella resents that. You know, she definitely, you know, pushes back against that, which is good.

MANN: The stakes here are high. Alzheimer's forced Bella to give up her career. Her life is smaller, focused on home, on her husband. And she says for now, that's enough.

B DOOLITTLE: It feels like normal life. What's happening to me is happening slow enough that I can't see it.

W DOOLITTLE: Right.

B DOOLITTLE: And I understand that.

MANN: But this is one of the things that tests their relationship, they say, the very different way they experience Bella's disease.

W DOOLITTLE: Sometimes when we're together, there's no sort of shadow around us, you know. But I don't think I ever go through a full day.

B DOOLITTLE: Well, I go through lots of days without giving it a second thought. I don't let it take over my life. So I feel like, there's still some wiggle room in there.

MANN: This wiggle room is the space their relationship occupies. Bella says she's stubborn. She's proud of their marriage. She and Will still cook together, travel, take care of their pets. They're doing OK, even as the symptoms of her Alzheimer's advance.

Brian Mann, NPR News, Glens Falls, N.Y. Transcript provided by NPR, Copyright NPR.

Brian Mann
Brian Mann is NPR's first national addiction correspondent. He also covers breaking news in the U.S. and around the world.