Pulling Back The Curtain On Alzheimer's, Through Its Lighter And Darker Moments
On a warm early summer day, Bella Doolittle sits on the doorstep of her house feeding biscuits to her dog Pepper. 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.
"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?" she says, describing the tension she often feels.
These are the struggles and setbacks that Bella and Will Doolittle, her husband, talk about in their podcast, the Alzheimer's Chronicles. They say they decided to share their experiences because they know many couples and families are struggling with the same challenges.
In all, more than 16 million Americans provide unpaid care for someone living with Alzheimer's or another form of dementia.
On a recent episode, Bella and Will described how their life is getting harder, bit by bit. "It definitely has been a very tough period," she recounted. "I became almost suicidal. It was horrible."
"Yeah, you were in bad shape," Will said.
Anxiety medication is helping, but at times their podcasts are raw, vulnerable and intimate, recorded over their kitchen table. During each episode, they pull back the curtain on aspects of Bella's illness, but they've also been increasingly open about the inner workings of their two-decade long marriage.
It's a good marriage, they say, that faces incredible new strain. "So what about the situation between you and I?" Will asked during an episode in the spring.
"You're not, like, emotionally in touch with your feelings when it comes to me," Bella answered. "You don't seem to pay very much attention to me. You know? You don't sit down and talk about things that are meaningful."
NPR first visited Bella and Will in January 2018, soon after she received her diagnosis. During our latest visit, a few weeks ago, Will explained that her condition has worsened to the degree that Bella often no longer remembers their talks. Even their arguments fade away.
But she also knows that Will is turning elsewhere for conversation, for connections to the world. It's a sad, steady erosion. But 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.
"Look it, Pepper is looking at you," Bella said, laughing. "She's giving you the look, like, Dad, what's the matter with you?"
In fact, two years after Bella began this journey, conversations on their podcast often sound remarkably 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 increasingly afraid. Their lives and their relationship have moved into a chapter where he often doesn't know what to do.
"There's a difficult balance 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," he tells NPR. "It's almost like having another kid, you know? And Bella resents that. She definitely pushes back against that, which is good."
The stakes here high. Alzheimer's forced Bella to give up her career. Her life is smaller, focused on home, on her husband, on their pets. She says for now it's enough. "It feels like normal life. What's happening to me is happening slowly enough that I can't see it," she says.
This is one of the things that tests their relationship, they say, the very different way they experience Bella's disease. "Sometimes when we're together there's no sort of shadow around us. But you know, I don't think I ever go through a full day [feeling normal]," Will says.
"Well I go through a lot of days without giving it a second thought," Bella says. "I don't let it take over my life. So I feel like there's still some wiggle room in there."
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 Pepper and their pet rabbit Beans. They're doing okay for now, even as the symptoms of her Alzheimer's advance.
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