NPR's Scott Simon talks with journalist Kitty Eisele about "Demented," her podcast documenting what it's like caring for an elderly parent as their memory fades and health declines.
INTERVIEW TRANSCRIPT
Scott Simon: Tell us about Al, your father.
Kitty Eisele: I'll tell you about Al. Al would tell you about Al. You know, for people outside Washington, it doesn't matter so much, but in Washington he was a journalist in a real old school sense. And for that reason, I think he knew almost everyone in town because he'd been here since 1965, reporting about Capitol Hill or involved in politics or policy. And then in the 90s helped start the newspaper The Hill.
He was a very outgoing and cheerful and even-tempered, friendly person. I really liked him. I mean, he wasn't hard as a person to be with. Even as he declined, I think he kept that cheerful optimism and curiosity and love of words.
Simon: Kitty, tell us the ways in which you began to notice that something was just amiss with your father,
Eisele: My mom, his wife of 50-some years, had died in 2016. And it really took the wind out of his sails. We had watched as he adjusted, but his memory was causing difficulty because he'd get lost or he'd lose important things like well, himself downtown, when he was walking around neighborhoods that he'd walked most of his life. Keys, wallets, glasses, cane, passwords. And yet still kind of all of us were in denial. These were, you know, easy to see as one-offs, but his mind wasn't working.
Simon: Demented is partly audio diaries of yours, and then parts are conversations very confiding conversations you have with friends, who have been through similar experiences. And let's listen to a friend of yours, Kim Jones Morris telling you about her experience with caring for her mother.
Morris: The way that my mom's Alzheimer's has manifested, there are a lot of behavioral changes before they noticed the forgetting. Being kind of unpleasant or saying things that weren't exactly appropriate, or, you know, being a little mean. People distanced themselves from her. And so rather than people being supportive and prayerful, they just kind of disappeared.
Simon: You say in the podcast that one in five Americans is providing unpaid care often by themselves for someone over the age of 50. That's a huge population, isn't it?
Eisele: It really is, which is why I was surprised that as I talked to people, everyone had a story about this. But I wasn't really hearing it in the media or seeing it or feeling like I had partners and company for it. I'd go into these caregiver support group things and I would be the youngest person, but the average age of a person beginning to take care of an elder is 49.
Simon: Help us appreciate just how much it dominates a life.
Eisele: Oh gosh, I could tick off a hundred things and really, they're small things but for someone on a lot of medication, dosages can change almost weekly. So I was running to CVS all the time. I could paper a room with CVS receipts. Depends, bed pads, urinals, rubber gloves, becoming Power of Attorney, taking over financial accounts at the bank, figuring out how you're going to pay for this.
Even if I did a lot of care, I was still, we were able to hire someone and it took two of us. And you think you can care for one person the way a parent can care for a child. But you can get a wiggly toddler into a car seat eventually. An adult, one person can't safely lift them all the time. But we don't have any money for that as a society, unless you declare almost declare bankruptcy, when you can get some government help for long term care, assisted living where you need care in your home. So if we really do value people in this country, we need to value both ends. And say we're going to help take care of families. We're not going to leave you alone, because you will probably have to step out of the workforce for some time to do this.
Simon: Al died just a few months ago. How are you doing?
Eisele: I'm actually really good. I'm so relieved. And I think I'm actually thinking about the holiday season, because that's when it all started for us. A lot of people go home on holidays and haven't seen family and really see the differences. That is a really good time to start asking. How would you want to be cared for if you couldn't care for yourself? But thank you for asking. I think it took a lot out of me to care for him. But I knew I wasn't going to regret it and I don't. We were able to give him a peaceful and dignified end and he was at peace and I felt so comforted by that.
Listen to Demented on Apple Podcasts, Spotify, on TPR.org, or anywhere you listen to podcasts.