When longtime NPR journalist Kitty Eisele became a caregiver for her dad, she was bewildered by the medical, legal and emotional challenges. She created a podcast tracking her experiences in an effort to help others going through something similar.
“I hope that anybody hearing this who’s also lost somebody, or is taking care of someone after a real near-miss, feels encouraged and supported because we need to have that conversation: How do we take care of the people we love?” Eisele said.
The first five episodes of her podcast “Demented” are available now on podcast streaming platforms and through Texas Public Radio.
Listen to the player above or read the transcript below to hear about Eisele’s journey and some of the topics she explores.
This transcript has been edited lightly for clarity.
Texas Standard: In the first episode, you talk about beginning to recognize the signs of dementia in your dad. Could you share what your experience was like?
Kitty Eisele: My dad had some serious heart failure challenges and that caused a lot of oxygen loss, I think, to his brain. So cognitively, things were confused. He was losing an awful lot of things, including himself. He’d get lost in neighborhoods that he’d walked for 50 years. He lost a car one time; forgot what garage he left it in. He would laugh about these things. I understood him not wanting to feel bad or embarrassed, but it was becoming more clear after time — a short time in an assisted living place that we’d asked him to try out — he wanted to be home. And I couldn’t really blame him. And we didn’t think he had much time left. His wife, my mom had died a couple of years back, and so I moved in.
What were some of the biggest learning curves in that process?
Eisele: Patience. That’s a huge one. I will give you a couple of things that I figured out that were helpful. And they’re so small. I got to know his neighbors before I even moved back in. So I had emergency contact numbers. I got to know his doctors. I found a key to the house and I made copies. These are little things, but you’d be surprised how you can get tripped up by not having a key when there’s an emergency.
I had talked to him and knew where his will was because when my mom died, one of his associates said, “You got to give one of your kids power of attorney, just in case.” Well, turned out he was in the hospital almost in a coma for three weeks and we needed to be able to make decisions.
We’re coming up on holidays when people tend to notice a very different mom or dad when they visit after some months. Start asking: how would you want to be cared for if you don’t feel like yourself? It doesn’t always work as a conversation. I had to have that conversation many times. But I found that was a better way than: Dad, I’m getting worried about you. His instant assumption is: we’re going to put you in a home and it shuts down conversation.
Why did you decide to share these intimate experiences as a caregiver in this podcast?
Well, partly because I’m a journalist. Writing things down and writing through problems helps me understand them and helps me cope with them. My dad was a journalist and his parents had small-time newspaper columns in farm counties. Everybody’s been writing about lives in my family for generations. So that part wasn’t too strange. It was normal to me to have to put all this confusion somewhere. So I just talked into my iPhone at night. Occasionally I’d turn my iPhone on when I was helping him do something, just to illustrate the sound of how hard it is to lift someone out of a chair, get them into bed, or count out all the pills for the week.
How comfortable are you talking about death?
I have thought a lot about it. I’ve done my will and DNR kind of orders and handed that off to my sister. That’s about the most I have prepared. With COVID, it got so hard. So many people were gone and missing from our lives and I count myself with that too. I lost people. We’re all in this dark grieving place or fearful place. And that’s OK. I want that to be gentle. I don’t want to encourage people to get morbid about this, but maybe it’s OK to come to terms with this and feel that grief.
I hope that anybody hearing this who’s also lost somebody or is taking care of someone after a real near-miss feels encouraged and supported because we need to have that conversation. How do we take care of the people we love?
There are five episodes of the podcast out now. Is this the completion of the project for you?
I’m going forward. I have other family members about to enter this real lengthy, aging elder care process. I’m fascinated by this. I’m obsessed with it. I feel like it’s part of a conversation I want to elevate the same way we talk about child care and the need for better care for the people we love.
We talk a lot about what we value most, and it’s usually our families, and I want us to do better by those families. So we’ve got funding for another season and possibly two. And so I want to hear — and I’m already interviewing — people with very different circumstances.
Some cultural circumstances where the youngest child or the daughter who’s not married is supposed to take care of the parents and put everything on hold. Step-families, another big issue. When you’ve got an elder and you’re not the direct relative, but you’ve got to help with an in-law or a step-parent’s long-term care costs. Who’s really in charge of this stuff? I call that industry Big Elder. I can’t understand who owns these places or why it’s so costly. How can we do better? Nobody’s going to pay for long-term care. It’s not part of Medicare or Social Security, so it’s up to us to figure out how to do this better.