[00:00:21] Dannelle: After commuting between her own and her father’s house to take him to doctor’s appointments and prepare his meals, NPR journalist Kitty Eisele decided to move back into her childhood home to care for her father full-time. What was expected to be a short-term solution turned into three years of living with her father before his passing in 2021. 

[00:00:49] She found herself bewildered by the medical, legal, and emotional challenges of caregiving and documented it through an audio diary project called Twenty-Four Seven: A Podcast About Caregiving. Since launching her show in 2021, Kitty has spoken to experts and individuals about navigating the experiences of providing care in America. 

[00:01:21] Welcome to The Caregiving Soul! I’m Dannelle LeBlanc. 

[00:01:29] [Music Ends] 

[00:01:29] Kitty: My father was hospitalized in 2017 for three weeks while his heart failure was being treated and medicated, we thought incorrectly, and it turned out it was, so, it took a very touch and go situation. Three weeks in a hospital is serious. My sister and I were just flabbergasted. And then he rebounded and he went for three more years –  

[00:01:50] Dannelle: Wow.  

[00:01:50] Kitty: – as his health declined and his dementia increased.  

[00:01:53] Dannelle: I’m curious about when you did move back to your childhood home, what you found most challenging about that? 

[00:02:06] Kitty: Probably my own psychology, keeping my own spirits balanced I would say. I didn’t even sublet my apartment, I didn’t think it would be this long. So, for the first year I thought, oh, I’ll just go back on the weekends and I’ll be downtown, do my stuff, see my friends, and it just, it couldn’t happen. I couldn’t have him alone. It felt like I was temporarily camping and yet it just kept going.  

[00:02:29] So, after a certain point, I decided to rent my apartment furnished, my downtown apartment, because I could do a lot of work with NPR, but I wasn’t full-time with them and I thought, I can’t look for a full-time big job, and manage this and then manage his death and selling the house and all of that. I knew I was not in a position to be a hundred percent at anything because everything was going into the caregiving. [Music] It was a choice I made thinking, you know, I can always find a job, but I can’t always help my dad die. And he didn’t have the kind of dementia that caused great distress or difficulty in dealing with him. If anything, he kept forgetting he had it.  

[00:03:09] Being in the house was not as hard as feeling like I was doing it wrong all the time. The hardest part for me was managing my own mental balance or emotional balance. Because when someone is not able to care for themselves, it’s rarely a steady line. It involved a lot of abrupt declines and emergencies. And that’s frequently what happened. [Music Ends] So, we had many ER trips to be checked out. There are these precipitous cliffs that health can sort of go down and then get steady and then drop again and steady. 

[00:03:46] And that was the difficulty for me managing that healthcare and my own emotional stability thinking, how long does this go? And I can’t do this anymore. I’m exhausted. And I keep trying to make my dad feel happier and I can’t do that either. And that was really hard to see him depressed cuz he wasn’t, he was a very cheerful, outgoing, optimistic person. I recognize that it’s natural to feel distress and perhaps depression as you near the end of life because it’s sad, like you didn’t wanna leave. So, in part of my head, I had to sort of allow for that and not try to cheer it away or pretend, but at the same time, I didn’t know what the line was. Like, is he seriously depressed? Is there a way I can make that better?  

[00:04:35] We played a lot of Scrabble. He was a writer, so he was great with words, and he loved Scrabble. So, I played Scrabble almost every night, and he played by himself during the day. But then I’d feel guilty cuz I didn’t wanna spend the whole night playing Scrabble. In fact, I didn’t want that at all. So, you know, what am I doing in the house if I’m not helping him play Scrabble? I just want to go off and read a book or go to a movie or don’t do anything. That was a hard balance. 

[00:05:03] Dannelle: Yeah, it is a very difficult balancing act when so much of what we’re doing is unpredictable. 

[00:05:14] Kitty: That’s the word. There isn’t an instruction manual and there are millions of websites, it seems like, that will give you about five tips. And they usually involve, put your own oxygen mask on first, be sure to check in with your healthcare provider. Like they all say the same thing, or to me they did. I did not find a great deal of deep resources online and what I found, you know, obviously varies from state to state or city to city. It was overwhelming. 

[00:05:46] Dannelle: Yes, it is. It’s overwhelming just sifting through so much information when really, oftentimes, what we’re looking for or needing is just a little bit of certainty that we’re doing it right, and that it’s okay to feel that push and pull of wanting to be there and not wanting to be there. 

[00:06:13] So, how did you, and where did you, end up seeking and receiving advice on how to, not only provide the right care for your dad, but for yourself? 

[00:06:28] Kitty: I certainly did better on, on his front than on mine. And that’s not to sound marterish, but basically I could at least identify what was going on with him. First things first, we actually hired a geriatric care manager for a couple of sessions, who happened to be a former neighbor, who was a nurse and had started a small agency in our town to advise families.  

[00:06:50] She didn’t do the nursing, but she as a medical professional understood what can happen to older people with complex health issues frequently that has a cognitive factor. So, speaking with her, and paying for that was – I think that was a huge asset for us. You said there’s no map, well, she sort of maybe didn’t have a map, but she could at least say like, these are the landmarks and this is how you’re gonna meet them. 

[00:07:20] I talked to my dad’s physician. Both my parents used the same doctor. They had had me sign a HIPAA release some years back when we were getting all this paperwork together, so I was allowed to know their health condition, like in an emergency. And I would say for any listeners, if it’s useful, ask a parent if they’d be okay with you meeting their doctor or going to the doctor with them, just as backup, so that you’ve established a little relationship. So, people often, elders don’t want, necessarily, to let their kids in on their business, but in my case, it was clear the kids were gonna have to sort of stand in the gap. And luckily their physician was fantastic. 

[00:08:03] You asked who else I got resources or ideas from: friends of our family, friends of my parents. We ended up hiring a caregiver for about 15 hours a week that first year who came to us from another family that we knew who the husband had Parkinson’s and she cared for him for eight years and he’d recently died. So, friends, family, geriatric care manager, physician, certainly any Area Agency on Aging. I didn’t even know that those existed.  

[00:08:35] Dannelle: To your point about reaching out and getting guidance from a geriatric care manager – just that one or two consultations can be very helpful. So, I wanna emphasize that.  

[00:08:47] [Music] 

[00:08:48] So, Kitty, you have made a career in the audio space and you began The Twenty-Four Seven Podcast as an audio diary, what motivated the process of transforming your personal experiences into a show? 

[00:09:07] Kitty: I think pain and grief, which makes a hard case for why one should listen. But I really didn’t know what to do with all of my confusion or feelings. Now, I’ve worked in NPR audio for at least a few decades, so it occurred to me I probably should do something with sound. 

[00:09:25] At night, sometimes I would just tape myself on my phone in the bedroom, like, “Oh God, here’s another thing that today”, thinking I might be able to use this in some way. But it didn’t occur to me necessarily that I had a podcast. I just thought, you might need to do something with this at some point. 

[00:09:39] And I taped my dad in limited ways with the phone, with his permission, but I really felt very uncertain about exposing him and uncomfortable about exposing him in distress, or in much less robust ways than he had been. So, there are some conversations I held some years back, at the beginning of this when his cognition was pretty strong and he was articulate, able to speak well, think well. 

[00:10:06] What helped me was hearing from friends who would say, “Yeah, this is a situation I couldn’t believe I found myself in”. So, I wanted to balance being honest in a way that I could have used early on as like a little barometer, a reality check. Oh, it’s funny actually, you just don’t feel it funny in the moment with making someone already vulnerable, more exposed. So, I really didn’t use a lot of him. I used him to sort of tee up my complete perplexed state and then called people to ask questions like, “How do I handle this? What is this about?”  

[00:10:45] [Music Ends] 

[00:10:45] Dannelle: All of those things, also ties in the idea when we have something that, a memory, that is documented by our loved one. So, like what your dad did on one of your podcasts, there was a gentleman, Ron Deprez, who created an audio diary as he was dying of ALS and the gift that that was for his daughter, Esme. And so, I was listening to all of this, I was thinking, gosh, that is such a, that’s such a gift. 

[00:11:17] And then I remembered my mom, who cared for my grandmother. My mom passed in 2015, and so, I had her journals, which was a, just amazing gift. But she’d also recorded my grandmother, and so – 

[00:11:32] Kitty: Wow. 

[00:11:32] Dannelle: – my sisters and I have these audio tapes with my grandmother. So, there’s, there’s a connection there. And I think that it’s tied to listening. 

[00:11:44] Kitty: It’s intimate. It’s a little like eavesdropping or theater because you’re listening to two people, usually in a dialogue, come to some discovery about themselves. And I noticed from my listeners, they really responded when I had the sort of diary and the interviews with Dad, because I took them somewhere, I went to a place. It wasn’t just a conversation about a, a broad issue. It was lived experience. This is what’s happening. So, your grandmother’s conversations with your mom, that’s treasure. 

[00:12:16] Dannelle: Yes, it is. One of the things that we, my sisters and I, treasure the most. It’s this dichotomy of, you know, laughing and crying at the same time. I mean, there’s so much of that in – 

[00:12:30] Kitty: Wow is there. 

[00:12:30] Dannelle: – caregiving, laughing and crying at the same time, that we hold those two things simultaneously and speaking of holding things, two seemingly opposite things simultaneously, when our job is centered around keeping a loved one safe and secure in our caregiving role, what does it then mean to help someone die? 

[00:13:01] Kitty: Isn’t that the hardest? That’s what I kept- like, I wanted my experience to be done. I wanted to be done with this. But what did that mean? That would mean my dad would be dead. So, that even felt like a crummy thing to be thinking, that it is so exhausting and that you sometimes just wish it was over. You wish you didn’t have to do it. But to me, that also raised, well, if it’s over, that means your dad’s dead. Do you wish that? And I was like, no, that’s not, it’s very complicated to sort that out. 

[00:13:28] And I was pretty patient with myself about it in funny ways because I thought, well, there’s a reason you’re so impatient and so exhausted, you’re not a nurse. Every time he has something go wrong, you don’t know how to do it. And so, I sort of gave myself a break in that sense.  

[00:13:44] So, that duality of like laughing, crying, holding the time is pretty sacred. I mean, I did recognize that it’s fortunate that I have this time with him to do as well as I can for him. We’re very fortunate and I felt like, okay, if it were me, I’d wanna be as comfortable and secure and loved as possible when I’m in my least capable mode. And for him, that meant being in his house. But that doesn’t always work.  

[00:14:14] Dannelle: I wonder if it’s the underpinning of knowing that death is coming, that there’s suffering involved, and so we’re not comfortable or practiced at holding two seemingly opposite things together at the same time. that, It’s one or the other.  

[00:14:41] Kitty: So true. One of my interviewees was a friend who made a second career as a hospice chaplain, trained for it. And I knew she’d gone through some stuff and lost her mom, and her dad was showing signs of dementia. And so, she came by one time just out of friendship, and I ended up interviewing her and she said, “You know, the reality is you and I each day are one day closer to our death”. That is the nature of life. You’re moving toward death. And it’s very hard to understand that and still be joyful. Maybe that’s a good thing to recognize life on – our time is finite and if you can hold both those thoughts, your life feels richer. It just is tense too.  

[00:15:27] Dannelle: Yeah, cuz we’re human beings, and it’s really painful to think about someone else’s, a loved one’s death, our death. But at the same time, that’s where and how we experience, I think, true joy. You talked about in the final episode of the first season of your podcast, you spoke with your father about dying and the afterlife. What did you learn from that? 

[00:16:01] Kitty: I felt like I had to have some sort of conversation because we’d had many emergencies in the previous months and I felt like, we’re in denial here. We’re pretending that like, oh, you can just go back to driving and you can go back to driving downtown to see your friends for lunch. Lots of crazy things that happened and (involving hospitals) and the fact that he was touch and go for three weeks, I think he understood, “this is, my heart failure is, is progressing and it’s bad”. So, I wanted to open the conversation about what my dad was feeling. 

[00:16:34] So, I was trying to just sort of tee up this conversation with him and I decided to record it and I said, “Can I just talk to you for maybe a podcast?” “What’s your podcast?” He totally did and didn’t understand, and he didn’t really care. And my grandmother wrote about her husband as he was dying and the fact that she had lost three children back in the great depression in farm life. So, people had written about, in my own family, this difficult experience. So, I didn’t feel too, like I was out of bounds in asking these questions. Not normally what my dad and I would talk about, but I felt that was okay to broach and not be pushy. 

[00:17:15] So, I wanted to ask him about the idea of what happens next? Where do you go? What are you, what are you thinking about an afterlife? Given that this man had a very strong relationship with a progressive strain of Catholicism and that I would take him to church, he wasn’t sure there was an afterlife. And I was very surprised. Very surprised. And he said, “That’s what all great religions have tried to wrestle with, but we don’t have any way of knowing”. 

[00:17:46] And I was sort of sad. I was like, well, maybe that makes it harder for him to think about death. I always thought he had this sort of lockstep sense of belief in an afterlife in some form. And when he didn’t, I felt pretty shaken cuz I thought, well that’s gonna make him more sad. And I don’t want him to be sad and I don’t want him to be afraid. I don’t want him to be human. I want him to handle this better because I can’t handle it. It was very much about me.  

[00:18:16] And I said, “What’s church for?” And he said, “Oh, it’s for helping you in this life”. I was like, probably not where I’d look. But for him it was meaningful. And ultimately, I do think he, he had a conception that there is something greater. So, that was our conversation. And he’d been in hospice, but it looked like he was gonna quote unquote, graduate. And [Music] as the first season draws to a close, we’re about to go out on the air and he does die. 

[00:18:46] So, he was very comfortable at this place and the people there liked him, which is remarkable. It was, we were on the way out. And I had a family friend who, whose uncle had been a priest and a good buddy of his, scrabble buddy, skiing buddy, and she herself was ordained in the Episcopal church. And I said, do you think you could come over and say mass. 

[00:19:10] My dad’s sound asleep. I mean, he’s on medication, heavy duty painkillers and he’s on his way. It’s a day before his birthday, we finish our little service, and at the end of it my friend said, “Why don’t we sing Happy Birthday?” She said, “Let’s not sing it in that long, slow, mournful way. Let’s just sing it in a cheerful way and more energetic”. 

[00:19:29] So, she and my sister and our caregiver and myself sang Happy Birthday and he opened his eyes and tried to sing and smiled and then went back to sleep. And so I knew, and I still know, that was everything, he was fine. He was, we, and he loved to party. He hears Happy Birthday, he’s gonna be there for it. The next day he turned 85. The day after that he died. I knew he was safe. 

[00:19:56] [Music Ends] 

[00:19:56] Dannelle: Ohh. [Sighs joyfully] 

[00:19:57] Kitty: Isn’t that beautiful? It’s so crazy. 

[00:19:59] Dannelle: Oh my God. Wow. Wow. 

[00:20:04] Kitty: So, I felt the universe in that sense, like things turned in a way that took care of us. All the energy we put in was there when we needed it. The universe held us. I call it God, other people call it energy. Something held us. 

[00:20:21] Dannelle: Yes, absolutely. The universe, God, holds us through all of the uncertainty.  

[00:20:32] Kitty: It doesn’t always feel good. It doesn’t always feel like somebody’s holding onto you, but when it does come through, I sort of felt like, okay, we’re good. We’re fine. This is okay. He’s gonna be okay.  

[00:20:42] Dannelle: Yeah. 

[00:20:43] Kitty: Just be in the moment if the moment’s sad, there’s probably a reason. It’s not your job to fix it. 

[00:20:50] Dannelle: Right. 

[00:20:50] Kitty: Just sit with it. 

[00:20:53] Dannelle: Kitty, thank you so much for joining me today on The Caregiving Soul. I appreciate it so much. 

[00:20:59] Kitty: Thank you for asking really informed questions and paying so much attention to the podcast, because that means a lot. 

[00:21:06] [Music] 

[00:21:06] Dannelle: Thank you. 

[00:21:10] Thank you for joining our conversation with Kitty Eisele. Kitty’s experience caring for her father, while also having the opportunity to record conversations with him about his care and his beliefs on dying, have created a time capsule that Kitty and her family hold dear and that listeners can connect to with their own caregiving stories. It’s so valuable to have conversations with others about hard things and to continue sharing these stories of wisdom. 

[00:21:51] Check out our show notes to connect with and follow Kitty or listen to her podcast, Twenty-Four Seven: A Podcast About Caregiving. Every episode of The Caregiving Soul has a page on empoweredus.org where you can find the extended show notes, including tips and takeaways, transcripts, and relevant resource links. 

[00:22:15] For additional bonus content from this episode, and to connect with us, be sure to follow the Empowered Us social channels on Instagram @empoweredusnetwork and Twitter @empowereduspod. 

[00:22:31] The Caregiving Soul is an Empowered Us original, presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to the show wherever you get your podcasts. 

[00:22:48] And remember, the right care includes care for you.  

[00:22:55] [Music Ends] 

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