Navigate the Bewildering World of Caregiving with Kitty Eisele, Host of 24/7
Show Snapshot:
Are you a first-time caregiver? Worried caregiving for a parent might be in your future? This week’s show offers a compass for navigating the bewildering, uncharted waters of caregiving for elderly parents. Our sherpa and guide is Kitty Eisele, an award-winning NPR journalist and host of 24/7: A Podcast About Caregiving. Kitty was thrust into a central caregiving role when her father experienced cognitive decline and emerged determined to help others navigate the myriad mental, physical, and organizational challenges that crop up when we need to “parent our parents.” Learn practical tips, how to find support, books + online resources, and tactical ideas for keeping all the balls in the air. Bonus! Kitty shares a candid look at the emotional challenges and unexpected beauty of caregiving.
Show Links:
Follow Kitty:
Kitty’s Podcast: 24/7: A Podcast About Caregiving
Quotable:
I think the sooner you can, start having conversations with elders about, ‘What would you want if something happened to you? How would you want to be cared for? What would make you feel safe and loved?’ That was my question for my dad—what would keep him safe, and what would make him feel loved?
Transcript:
Katie Fogarty (0:03) Welcome to "A Certain Age," a show for women who are unafraid to age out loud. I'm your host, Katie Fogarty. Are you one of the 43 million people in the US acting as an unpaid caregiver? That's one in five Americans, if you're good at math. Math has never been my strong suit, but even I can grasp the equation of two parents and one unavoidable truth: everyone ages and eventually requires assistance managing daily life. For some of us, it happens earlier and with greater velocity.
Today, I'm excited to explore the topic of what happens when you become your parent's parent. I'm joined by longtime NPR journalist and Emmy Award-winning producer Kitty Eisele. Kitty's the creator and host of "24/7," a podcast about caregiving. Kitty moved back to her childhood home to care for her beloved dad and found herself bewildered by the medical, legal, and emotional challenges of elder care—plus incidents like the time her dad headed off on a 300-mile road trip without telling her.
If you are caring for a partner, a parent, or an older relative, if you think caregiving is in your future, or if you simply want to better understand the caregiving challenges of someone in your own life, stick around. This show is for you.
Welcome, Kitty.
Kitty Eisele (1:20) Thank you so much. I'm excited to be here.
Katie Fogarty (1:22) I'm really excited. This topic is near and dear to my heart—both of my parents are still living. One is beginning to navigate some medical issues, so I am all ears for what you have to share. Your podcast really focuses on universal themes, right? When the tables turn, sometimes we need to step in and care for our parents. But I know for you the genesis is really rooted in personal circumstances. I would love to open by hearing you share how you got started in the world of caregiving and decided that this particular podcast needed to exist.
Kitty Eisele (1:56) Well, first of all, it wasn't something I intended to become a quasi-lived expert on. And it's even strange to think that that's what I'm doing now because I had a pretty full life beforehand. But in a certain way, my parents—I live in Washington, and it's close—I was physically near my parents when my mom was having a lot of health troubles fairly young in her mid-70s.
And so I had gone through the ringer before she passed, with my sister and with my dad, in understanding what our systems were for people who become unable to care for themselves, or even in a short period may have a broken hip or an injury or surgery. We have very complex systems in which we, as Americans, make sure that people are cared for when they can't take care of themselves. And I had kind of learned that the hard way the first time around.
After my mom passed in 2016, my dad's health really took a nosedive. He had had a heart issue as a kid, so it wasn't brand new. But physically, he was not as robust as he normally had been. I mean, this is a former athlete who worked out with a trainer, and he was having heart issues that were also causing loss of oxygen to the brain. So his physical illnesses were manifesting both in his body and in his logic, balance, memory, etc.
This is not to say my dad had full-blown dementia, but it was becoming enough of an issue that my sister and I were both very concerned about his ability to live alone. He was hospitalized for about three weeks in the summer of 2017. We experimented after that with having him go to a local assisted living place where he knew a lot of people and where he would get his therapeutic recovery time.
He bounced back and spent six weeks at this place and decided he was going to definitely move home. That didn't go so well. And at one point, my sister and I asked him to continue living in this place for the winter after his disastrous road trip in which he wanted to go see relatives over Thanksgiving but didn't even know for sure if they were going to be there. He'd taken a flight out to the Midwest where he was originally from and then, unbeknownst to us, rented a car instead of flying the rest of the way, and got lost on Thanksgiving for almost 12 hours.
Katie Fogarty (4:24) I'm laughing not that it's funny, but because, you know, it's like insane. I listened to the show, and I know that there's so much pathos and drama in what happens when our parents become ill, but there's also a lot of humor. It's just like life—what is it they say about comedy? It's tragedy plus time. And it's super challenging. Anyhow, get back to the story. So you recognized that your father—
Kitty Eisele (4:55) Yeah, we knew that things were—I mean, that was sort of a final straw. By the way, as he did this, he'd lost his cell phone when going through security at the airport, and that was not the first cell phone he'd lost. So he was driving all over Iowa on Thanksgiving in a storm and ended up at a Target in the middle of the night, and finally managed to reach a cousin who was able to come retrieve him.
Long story short, he was in an assisted living place for about four months and just decided he wanted to be home. His prognosis wasn't great, and we'd been through all these machinations to keep him safe, get him to physical therapy, take him to the doctor, make sure he was getting fed, and his medications and his house was well cared for.
It just seemed at one point like it would be easier for me to move back to the house, assuming he had about six months—that's kind of what the medical folks were telling us. And I thought, it's the only thing I can do right now that will give him comfort to be able to age in his own home that he's lived in for 50 years. I thought, okay, I can't do that any other time. I'm established enough in a career that if I have to not be working full time for a little while, I'm pretty sure I can pick up some work after this. And in fact, this is more significant than any career thing I can do.
Katie Fogarty (6:17) It's so lucky that you were able to take that time and that you had the resources, education, and flexibility to be there for your dad when you needed it. I know that you say on your show and in articles that your dad was experiencing cognitive decline—it wasn't quite full-blown Alzheimer's or dementia, but it was definitely impacting him. But at times, you felt like you were the one losing your mind.
Kitty Eisele (6:48) Totally. Originally, when I started this podcast, it was because I was doing temp work for NPR from home, or one or two days a week downtown. I started thinking, why am I not doing something on this experience? Because my heart was breaking. I mean, honestly, it just felt like I was so alone. And yet, you said 43 million—there could be well more by now. All of these people my age are going through this and we're talking about it at the coffee machine at NPR, when we go out for drinks. Everyone I know has some experience with this because they're all in the same age range.
If this kind of began for me right around 50, I just started taping things on my phone. I'm not a terribly great producer in terms of coming up with great audio things, but I thought this is somewhat of a diary. And if I don't do this, I'll feel like I haven't really made use of my time.
That said, it took me a lot of thinking because I didn't want to expose my dad. I felt like he was a good friend—my dad and I were both journalists, we knew a lot of the same people in Washington. He had been very vigorous up until a few years ago. So I felt very cagey and protective. I didn't want to exploit him. So I decided to focus the whole experience on me as a caregiver, deliberately, because I didn't want to put very much of him out there in a less robust, to me, normal framework the way my dad has been.
Katie Fogarty (6:51) I totally can appreciate that. There is this sense of protectiveness we have for our family and not wanting to expose them. The one parent that I'm dealing with these challenges with—it's something that I talk about in my private life with people who know me well, but it's not something that I'm talking about yet on this podcast. I can completely relate to that.
I love that you took this very personal experience and decided to share the pressures and difficulties of being a caregiver with a wider audience. One of the reasons I invited you on this podcast is that I did a quick audience survey at the end of 2023, and I was delighted to have listeners share what they wanted to hear me talk about in 2024. Way more than half said they wanted to talk about aging parents and caregiving. Because you've hit the nail on the head—people are either experiencing this, they're at the beginning of it, they're on the precipice of it, or they worry that they might be because we read the papers, we see the news, we know what's coming.
When we come back from this quick break that we're heading into, I want to ask you what surprised you most about becoming a caregiver.
[Ad break]
Kitty, we're back from the break. When we headed into it, we talked about how you felt protective about sharing your dad's story, you chose to focus on the part of it that was your story, that of being a caregiver and what you had to learn and bring to the equation. What surprised you most about having to take on this role?
Kitty Eisele (9:58) Honestly, I think it was the physical and emotional fatigue of it. Originally the first season of this podcast, I called it "Demented" because that's how I felt—our system is completely demented. It doesn't exist. There is not a long-term care system in this country that's standardized, that works for everyone and that's subsidized. I thought I was losing my mind.
I probably bit off more than I could chew, but I didn't know my dad's health was going to get somewhat more stable—it's stable and then a slow decline. And then we hit COVID, so there really wasn't a question of him being in any other place where we could get additional care.
I did hire a caregiver the first year. Maybe about six months, I did it myself, and then I hired somebody about 15 hours a week. By the second year, I couldn't do it anymore, so she came 40 hours a week, but that's still nights and weekends.
A lot of older people—I don't know that my dad's alone in this—but many people who take medications wake up in the middle of the night, and they're discombobulated, or they need to go to the bathroom, or they want to get up and get some orange juice. But balance can be a big factor for people with dementia. That's a way in which dementia can manifest.
I actually never I even thought of that. I was, I actually didn't know what dementia was. I thought I knew what I was doing, but I'd never really asked: what is dementia? One of my episodes is with an occupational therapist who specializes in working with people who have dementia, and really explained to me that it's an umbrella term. When your brain is sort of dying off, or pieces or parts aren't connected, it affects everything in your body—from speech to memory, to executive function, to sense of touch, smell or taste, to how well you balance in a physical setting, where you are in a room, or how well you can see peripherally.
All these other ways that dementia can manifest were not apparent to me. So I kind of had an internal fight like, why does this keep happening? Why does my dad wake up in the middle of the night and then fall, and I can't get him back in bed? I can't even get him back up on his feet. And two months ago, he was taking walks—what's going on?
So psychically, psychologically, I was not informed enough to know that these are natural things. I was getting really frustrated walking after him into a room where he would maybe set down a cup of coffee or glass of orange juice, and it would miss the table and spill everywhere. I learned later dementia can have an impact on your peripheral vision. So many people end up kind of with binocular vision, and they're not seeing what's on their side. So for him to set a glass down, he very often would miss the table. And I thought it was just being absent-minded or not paying attention. But in fact, he just didn't see it.
I hope that's answering the question. But the biggest surprises to me were the psychological toll it took and the physicality of caring for someone. I actually want people going through this to think about this because I had to have it pointed out to me—many of us can get a toddler into a car seat, you know, a kid might weigh 30-40 pounds, and you're wrestling them into a car seat. When you're dealing with an adult, they could be 180-200 pounds. Most of us aren't used to carrying that kind of weight. If someone falls, to be able to lift them and get them back on their feet or into a chair can be very physically difficult.
For people who are hired caregivers, for the most part, we've sourced that out to women from other countries, brown and black women, people physically often who are smaller than the people they're taking care of. So there's quite a record of people getting injured while they're caring for someone they love. It's not something we're taught how to do.
Katie Fogarty (14:10)
No, and I think you've done such an excellent job of kind of sharing the size and scope of the challenge. Listening to you talk, it occurs to me that the word "caregiving" is almost inadequate to describe what it actually takes to be a caregiver. This is why you're calling your podcast "24/7."
Kitty Eisele (14:31) We did change the name because people felt like "Demented" might have been unpleasant or unkind. I had really run that by a lot of folks in the Alzheimer's community because I wanted something edgy enough that would get people to look at it twice. And I did feel like the whole system is demented.
Katie Fogarty (14:49) The whole system is demented. I think both titles work, but "24/7" really captures the notion that this is an enormous challenge. There are no days off. It's not like your dad's like, "Oh, five o'clock on Friday, you must be clocking out, Kitty." That's not what's happening. The needs are 24/7, they're 365 days a week. It's super intense.
I want to ask you—when I was researching for this episode, I saw you in a wonderful interview, and you talked about the beginning of your father's caregiving journey. You said you felt "without a compass." For somebody who's at the start of this caregiving journey, what would be a practical or tactical suggestion that you would give to help them navigate and ease their entry into this new, very bewildering world?
Kitty Eisele [15:39] Best thing you can do is inform yourself about how we provide long term and short term physical and medical care for our elders.
Katie Fogarty [15:48] And where would we do that - like on Google? Or where are you -
Kitty Eisele [15:51] Believe me, on Google. The AARP website, I send people to all the time. You might have to search around; they frequently run these kinds of primers. AARP locally, every state has something akin to the Area Agency on Aging. Every state should have some office on Aging. Those may not be quite adequate to inform you, but I think it's a start if you're looking for services in your area.
Katie Fogarty [15:51] If you want to just understand better about aging, there are a lot of really great books. Some of them also have to do with mortality. You asked what was surprising - I think I had a lot of grief. I really liked my dad. And to watch the decline, even though it's natural, just hurt. And I felt so sad.
Kitty Eisele [16:20] He had a beautiful passing. I will always be forever grateful that nothing was unsaid, that we'd had that time together. And actually, I wasn't that brokenhearted when he was gone because I'd already done all this grief in some positive way. For anybody who's going through this, that was something I talked with a therapist about - this idea of anticipatory grief. You're watching someone say goodbye to this world and lose some of the things they've developed.
Katie Fogarty [16:48] I think reading anything you can do at the library about aging, about aging and mortality - I don't mean to make it only a depressing thing. I think there's just great beauty in this experience, there is true, humbling beauty. And I'm proud that I did it. I definitely couldn't do it again. It took me two years to physically feel somewhat recovered from this; the stress was chronic. And that's even with paid care and a person who was frankly of really lovely temperament, was delightful to be around.
Kitty Eisele [17:20] I didn't have the kind of behavioral complications that can happen for people through no fault of their own because the wires are getting crossed. That is something else for folks who may find that suddenly they've got a very antagonistic parent, or stepparent, or even a sibling - all these things can present themselves in different ways.
Check out AARP, check if your state has an area agency on aging, get to the library and just go into the aisles that have books on this. Then prepare yourself for what your relationship is. The sooner you can start having conversations with elders about - how do you want, what would you want if something happened to you? How would you want to be cared for? What would make you feel safe and loved? That was my question for my dad.
Katie Fogarty [18:15] That's a phenomenal question to be asking. My siblings and I have been thrust somewhat like you into a bit of a caregiving experience. One of the things I learned during this process is something called 40-70 - by the time you're age 40 approximately and your parent is age 70 approximately, this is the time to be having those conversations. Sometimes we can wait too late or too long, and it gets more difficult to have those.
Kitty Eisele [17:20] I didn't have the kind of behavioral complications that can happen for people through no fault of their own because the wires are getting crossed. That is something else for folks who may find that suddenly they've got a very antagonistic parent, or stepparent, or even a sibling - all these things can present themselves in different ways.
Check out AARP, check if your state has an area agency on aging, get to the library and just go into the aisles that have books on this. Then prepare yourself for what your relationship is. The sooner you can start having conversations with elders about - how do you want, what would you want if something happened to you? How would you want to be cared for? What would make you feel safe and loved? That was my question for my dad.
Katie Fogarty [18:15] That's a phenomenal question to be asking. My siblings and I have been thrust somewhat like you into a bit of a caregiving experience. One of the things I learned during this process is something called 40-70 - by the time you're age 40 approximately and your parent is age 70 approximately, this is the time to be having those conversations. Sometimes we can wait too late or too long, and it gets more difficult to have those.
Katie Fogarty [20:56] I would also add - you should ask your parents, even if they don't want to share them with you currently, get them to write down a log of all their passwords and login information for all their major accounts.
Kitty Eisele [21:09] So smart.
Katie Fogarty [21:10] Because that is an enormously big ball of yarn to unwind when you need to start pulling those threads. We have learned that the hard way. That's an important thing to write down - doesn't mean you need to take over those things now, but you just need to know where they are, they should be listed somewhere.
Kitty Eisele [21:27] My dad had typed them out, and they were in the top drawer by the desk. Those are things I needed to find out quickly when he was hospitalized so we could take the next steps. Another thing that worked in our favor was my parents had lived on this cul-de-sac for 50 years, and their neighbors liked them. We just exchanged emails and phones when I wasn't living out here - keep an eye, if somebody doesn't come pick up the paper for a couple of days, let me know. They were wonderful. One night, a neighbor came over in his bathrobe and helped me get dad back into bed because I couldn't lift him.
Katie Fogarty [22:15] Oh my gosh, these are things that you just do not think about. I would also say I've spent time on the Alzheimer's store - which is kind of an unusual shopping destination. They have very cool things like medicine pillboxes.
Kitty Eisele [22:39] Right, I could do that every week. Fill out the pillboxes.
Katie Fogarty [22:41] But some of these have Wi-Fi - they're smart medicine boxes, so you can have it synced to a cell phone or iPhone, and you can discover if your parent or relative is opening the pillbox or not.
Kitty Eisele [23:00] Oh my gosh, that would have helped because -
Katie Fogarty [23:02] Which is pretty incredible.
Kitty Eisele [23:04] Sometimes my dad took several days worth - I didn't see it, and he just retook several days worth of nighttime medication. Terrifying.
Katie Fogarty [23:11] And you can monitor - I mean, it's not tracking whether or not you're taking it out and putting it into your mouth, but at least it's letting the person on the receiving end know if the box has been opened. Again, you were fortunate to be in close proximity to your dad, but if you're living across the country from parents, which often happens, it's great to avail ourselves of these tools.
Katie Fogarty [23:30] I'm curious about your podcast, 24/7, which features guests who've experienced caring for patients with Alzheimer's and dementia. You've had Ronald Reagan's daughter Patti Davis, young millennial caregivers, adult children of comics and famous authors. Is there one particular interview that has stuck with you?
Kitty Eisele [25:08] As I finished the first five episodes, I was doing work with Texas Public Radio as a consultant. They offered to help me get them to air. Right as we finished that first batch, my father died. We already had a plan in the contract to keep going so I started turning to other people's experiences.
Patti Davis wrote "Floating in the Deep End: How Caregivers Can See Beyond Alzheimer's." She spent almost a decade after her father's passing leading workshops for caregivers. She felt this is something that's under-understood and under-supported in this country. She wanted other families to have an easier time than she did, even with all the resources her family had. She's a beautiful writer and was so honest about her experience and how she went on to support other caregivers.
Kitty Eisele [26:15] As a society, we don't have a good structure to care for people who can't care for themselves - from babies to elderly to those with serious disabilities. Structurally, there are reasons this is becoming overwhelming. We're living 40% longer than at the turn of the 20th century. Families have fewer children. We live at greater distances. We don't have multi-generational families like other cultures.
This falls back mostly onto women because they tend to be the carers. It's navigated at night, at lunch, between work shifts and getting kids to soccer. Ai-Jen Poo runs Caring Across Generations at CaringAcross.org - they help caregivers unionize and raise visibility in Congress.
I also recommend Hilarity for Charity (HFC), run by Lauren Miller Rogen, who helped care for her mother with advanced Alzheimer's. They raise money for caregivers and offer free online support groups in Spanish, for widows/widowers, couples, and younger people caring for parents. You can find them at HilarityForCharity.org.
Katie Fogarty [30:08] I follow them on Instagram. Seth Rogen's wife was quite young when she began caregiving.
Kitty Eisele [30:29] About a quarter of the people doing this are in the millennial generation or under forty.
Katie Fogarty [30:33] Dr. Annie Fenn, who focuses on brain health and nutrition and wrote "Brain Health Kitchen," is involved with them. Has there been something particularly useful from your conversations that's worth sharing?
Kitty Eisele [32:07] A friend said something that's been a good mantra: "Later is now." Watching two parents deal with demanding illnesses at life's end, I want to ensure I get there having done meaningful things. If I could do it again, I'd have looked for help earlier. Two thoughts: seize the day, and get help early without feeling bad about needing it. There's no right way to do this. Don't assume you can do it alone.
Katie Fogarty [33:43] That's fabulous advice. A friend of mine said her mantra was "I'm doing the best I can." We're moving into our speed round. I appreciate you sharing your story and letting listeners know about 24/7 as a resource.
Katie Fogarty [34:59] One word to describe caregiving?
Kitty Eisele [35:00] Loving.
Katie Fogarty [35:08] Have you acquired a new skill or mindset since becoming a caregiver?
Kitty Eisele [35:09] Calmer.
Katie Fogarty [35:28] Is there one caregiving tool or action every listener should consider taking immediately?
Kitty Eisele [35:44] Start having the conversation - you'll have it multiple times. Don't be afraid of conflict. Make sure you have good sibling relationships. Heal whatever's wrong. You're going to need a team.
Katie Fogarty [36:26] A book, podcast, or website that's been helpful in your caregiving journey?
Kitty Eisele [36:30] "Being Mortal" by Atul Gawande. He writes for The New Yorker and explores how we navigate this period for loved ones. It's readable, comforting, and provides good frameworks for asking yourself the big questions.
Katie Fogarty [37:05] What's a lifestyle hack that keeps you sane?
Kitty Eisele [37:17] Sleep. I get a lot of sleep. Before COVID, I got a personal trainer - the caregiving was so demanding, I needed someone to help me do what I wouldn't do otherwise.
Katie Fogarty [37:35] Complete the sentence: As I age I feel...
Kitty Eisele [37:46] Wise. That's a benefit from all of this. I feel more grounded, with knowledge that helps me approach things more calmly.
Katie Fogarty [38:08] You can't go through hard things without coming out maybe a bit dinged up but also shiny, reinforced, and wise. Thank you so much. How can listeners find more of you, your work, and your podcast?
Kitty Eisele [38:55] Google "24/7, A Podcast About Caregiving." We're on all podcast platforms at Texas Public Radio. The first five episodes are short and diaristic - me, my dad, our caregivers, learning practical things like giving your dad a shave or talking about dying.
Katie Fogarty [39:35] This wraps A Certain Age, a show for women who are aging without apology. We have almost 200 Apple podcast reviews - can you help me hit that number? Did you learn something today? Do you feel more seen and supported? Please take five minutes to write a short review on Apple podcasts. Special thanks to Michael Mancini who composed and produced our theme music. See you next time and until then, age boldly beauties!