Journalist, Producer Kitty Eisele’s Honest Recount of Her Time as Caregiver

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa. This is the Brain & Life Podcast. For some families, there can come a point where the line between raising a child, caring for our parents or elders really starts to muddy the storybook versions of social patterns and parenting. Whether you have helped a family member or a friend after a surgery, or started to walk the long path with them of a chronic or debilitating disease, this is a story many of us can relate to.
This episode will continue our stories on caregiving and builds on our previous discussion with Michelle Boyaner about her experience with her parents and her documentary It's Not A Burden. Kitty Eisiele used her skills as a journalist and radio host to share her story of caregiving for her father when he was progressing and living with dementia. We would also like to thank Kitty and her team for letting us include clips from her podcast in this episode.
If you want to let us know what you think or if you have questions or ideas for future podcast topics, you can call and leave us a message at 612-928-6206, or you can also email us at blpodcast@brainandlife.org.
So next week, on May 11th, we'll be recapping some of the news and latest science coming out of the American Academy of Neurology's annual meeting just held in Boston. I really want you guys to get a chance to learn and find out what's really coming out that matters to you as the community.
Then May 18th, we will have Bradley Rose. If you're into cycling or use Peloton, you might know his name. But if not, either way, he's a fitness instructor who had a stroke at age 33. That'll be followed by a conversation with Dr. Sarah Song, a stroke specialist. We're glad to welcome her back. You may remember Dr. Song from our episode with Timothy Omundson. You can check out these episodes and all of our past episodes wherever you listen to the podcast or online at brainandlife.org. I hope you enjoy today's episode.
Welcome back to the Brain & Life Podcast. Today I'm joined by longtime and Emmy-winning NPR journalist, writer, producer, Kitty Eisiele. I'm humbled and intimidated to turn the tables and interview her about her story with dementia in her family and her experience having the tables turned on her, going from daughter to care partner for her own father after an ill-fated trip to the Midwest.
She has shared her caretaker journey with our community on the 24/7 podcast, a podcast about caregiving, and also interviews others in the community, providing essential information for everyone about aging, dementia, caregiving, and, in general, living better with the time we have. This is one of the top podcasts I recommend to people with aging parents and other caregivers. We truly appreciate you joining us here on the Brain & Life Podcast.

Kitty Eisele:
Thank you. I'm glad to be here, and I'm flattered to be here, too.

Dr. Correa:
So, Kitty, I wanted to start off to learn more about your father. He was also a journalist. Share with us more about his story and his time working in the field.

Kitty Eisele:
Thank you so much for asking about him first, because that's the point of this. These are family members, for the most part, that we love and care about, because they are people that have been with us forever and have a full life. That is something I tried to get into the beginning of most of my episodes, which is they're focused on the experience of a caregiver, but what I'd call the caree, the adult, the elder, the person we care about, I want them to not just appear as a victim or a problem, because it's an issue but it's not somebody that didn't have a full, wonderful life. So thanks for starting with him.
I'll briefly explain that my dad was a Washington journalist. I live in DC as well. My family came here in the '60s. And so, he had been doing all sorts of stuff, but he basically was a downtown political journalist. I grew up in the suburbs of DC, in the family house that I'm actually now sitting in.
He and my mom were there while I was working for NPR downtown. At the time, I was working on Morning Edition, the morning show, at night. Both of my parents had crisis health issues in 2013, where there were bad falls and ICU trips and uncertain whether or not they could safely go back home. That was a brand new experience for me, a huge emergency.
I'd never even considered that being a thing I would need to step into. We had all the planning done for care at the end of life, but not for care if they couldn't entirely take care of themselves.
So my dad had a bad head fall, bad fall on the tennis court, and a brain bleed. For somebody who makes his living with words ... He'd already retired, but he was still writing columns and things ... that was a real complex recovery.
So I helped my parents stabilize, and they finally did at this house in the suburbs where they were living. My dad was still writing. He was working on a memoir. He loved doing ... At the time, he'd done some food restaurant reviews. He was a very outgoing, gregarious, really kind person.
At a period in his life, he'd hired a lot of young staffers to start a new newspaper in Washington called The Hill. This was about 20 years ago. Many of those young staffers were roughly my age and, they really came to play when his health declined. So I think he was both the kind of person that made friends very easily and kept them. That was a huge help to our family, to have people who'd been in his life visit him at home because he could no longer go downtown safely. He'd get lost walking around.
We were really, really blessed by that, I think. It taught me a lesson about keeping your friendships in multiple generations because they bring different energy.
But to finish with my dad, I don't even know what else to say except that probably everyone in Washington knew who he was, but not because he was some hotshot in the green room on CNN. He'd just been there so long and he covered the Congress for so long. Because he was so genuine, he found a story in everyone.
And so, if you were the shoe shine person on the Hill, or you were the guy who cut the vice president's hair, in one case it was the White House tailor who had an impenetrable accent, but a little tailor shop on 14th Street, who at some point had been homeless sleeping in a park when he first came to this country. Dad figured out who he was and did a great interview. That was the kind of people that, all walks of life, were equally interesting to him. In that sense, it brought a lot of joy in his later years, that those people stayed in touch and cared for him and cared about him.
It's a good example of how you live a meaningful life where you aren't only your career. You're part of your community. But when a family member becomes very ill or has cognitive challenges, it can become very isolating. That's where I came in.

Dr. Correa:
He was so in touch with other people's stories and they were such a part of his life and what he brought to others. How much do you think he had a sense of holding onto those stories and were they a comfort to him later?

Kitty Eisele:
Yes and no. If you mean ... Well, for example, my mom died in 2016 and had been in and out of hospitals with some challenging health conditions. And so, I think that really knocked him sideways. He'd been caring for her in a fairly intense way for a while. And so, even though he had been working on memoirs and doing other things, I could tell from his writing that his cognitive state was changing. He was a terrific writer and editor. I mean just amazing. And I could see things that were not as clear as they had been and were complex, confusion, editorial mistakes, things like that.
So his memory of people was still really strong, but his memories of their events, or his quick, quick knowledge of any political event and the history behind it that could make a strong framework for comparing something now, bringing some light to bear on a current issue, that stuff was disappearing.
That had been a stock and trade. The guy's been covering Washington politics since 1965. This is somebody who had a very deep knowledge and political memory and American history knowledge, and that was becoming much harder for him to access. And so, he became quieter in a lot of ways. He wasn't as talkative. There were other cognitive things that I was beginning to notice that were becoming really concerning.
So, yes, the friendship stayed and he knew who people were, and people made points to call or come over with his favorite deli sandwiches from downtown or sit and play scrabble with him. But his ability to recall the deeper things that he knew that were more operative, that was fading.

Dr. Correa:
With so many versions and types of different dementias, they talk about isolation being such a big aspect of it. It sounds like, really, the storylines of it and all those people that he connected with were so important to him. In a way he became isolated from even their stories as he disconnected from those memories.

Kitty Eisele:
Exactly. I saw that with so many people. That was one of the harder things to help out with and to see and to try to compensate for.

Dr. Correa:
Before all this, how was your relationship with your father growing up and later as you were building your own journalism career?

Kitty Eisele:
Very great. I feel so fortunate. I mean truly fortunate. Many people have said that, "You and your sister," I have one sister, "you're just really lucky you have such a great, easygoing dad who champions his daughters," and he really did. He came from a family on a farm in the deep upper Midwest in Minnesota who also had writing careers. They were farmers and they had newspaper columns.
But I think for him, coming to a city like Washington, traveling with the various White House tours, he saw the world as this giant treasure box. And so, in an unexpected way, he got to open that and he wanted to open it for other people. If you ask some of the younger journalists, he would always grab them and say, "Listen, we're going to sneak into this," or, "Come see this from this room. We're going to be in this ambassador suite." "Come over to the State of the Union with me afterwards. I'll introduce you to these two guys."
He loved being able to say the world is open to you and let's go meet it. He did that with myself and my sister. It's not how I got into journalism. I backed into it from filmmaking. But when I came to Washington, even though I was on different shifts, we would run across each other at events or parties or whatever. I mean we ended up knowing quite a few of the same people. For that, I'm grateful that his reputation was kind and good, because it meant that other people treated me well.

Dr. Correa:
As things started to transition, was there a period of time for you that you felt like you were mourning some about that connection and relationship that you had with him about these stories?

Kitty Eisele:
Yes and no. I'd say the bigger mourning was seeing him disappear. The bigger worry ... We could talk later about anticipatory grief and that kind of losses that are constant, the bigger worry was keeping him safe. He had a heart condition as a kid. Maybe 25 years before, maybe when he was 60, he had a valve replacement and some bypasses, but he had damaged enough oxygen to his brain over the years without getting adequate support.
I think that his physicians marked that up to what, I guess, you call frontotemporal dementia, or at least loss of cognitive function that didn't qualify as something like Alzheimer's or Parkinson's. This was a consequence of heart disease and heart failure that he was already classified as having.
So it played out in things like being unsteady, lots of falls, having forgetfulness issues if he was driving, losing the car, forgetting to pay bills because he thought he'd tossed out the mail because it was junk mail, things that he'd always been on top of.
So my losses were his losses. I was trying to compensate for that and make sure he was safe, trying to make him understand that as his health was declining, it was going to require more assistance and maybe some more limitations.
So in the sense of our relationship being really strong, I think he did trust me and my sister, but it wasn't easy for him necessarily to let go of things like banking. No parent wants to open up their accounts. But, fortunately, my parents were good planners and I had power of attorney after my mother died. So I was able to work in some cases with his broker and just make sure that we were all on the same page about what did he have in the bank and how was it going to be used if we needed to hire more care or if he had to go move somewhere.
That took a lot of time to build that part of our relationship. It's not a normal adult-child, parent-child thing. It's flipping. It's reversal. We may have differed on how to deploy those things because I thought we needed more help than he thought, because I could feel it. I was going under at a lot of points thinking I don't even know if I can do this.
So when you ask about my relationship with him and the losses, they're not only losses. I think they're transformations. That's what I found as becoming a parent to my parent. That's how I've termed it. Even though it sounds infantilizing to him, there is quite a bit of childlike sensibility, or at least the capacities that a very young child has. Some of his own behavior and capacities were reverting to that.
So I had to politely step in, and sometimes not politely, sometimes in a conflict situation, just say, "We're doing our best for you. Can you trust us that what we're doing is because we love you and we want you to be safe and loved and have a dignified treatment? Tell us what you want."

Dr. Correa:
I'm so glad at least that you and your family had an opportunity to think through some of the planning after everything with your mother. But it points out that no matter how prepared you think you have become and you've set up, there's always more that you're not aware of.
Going back, you mentioned several things that changed over time with your father. But at the beginning, when was it that it became clear your father needed more help with his care?

Kitty Eisele:
After my mom died, he was almost ... It was a deep, deep grief. He was almost speechless for several months, like almost catatonic. Beyond just grief, it was almost such a shock.

Dr. Correa:
Wow.

Kitty Eisele:
When he started to come out ... We talked to the doctor about it, too. It was not something that was just ... We were taking him to his doctor's appointments. He wanted to go on a trip to 17 Latin American countries that he hadn't yet visited. He'd been all over the world, but he had a list of maybe 13. He doesn't speak Spanish, he's losing his iPhone everywhere he goes. He forgets things. And three of those countries are at war.
But he made a list on yellow legal pad and he said, "I want to go here." I was like, "Okay, let's see if we can make a couple of them happen. Maybe we can get two on an elder care trip, one of those elder services," and that wasn't going to happen.
So his college was organizing a trip to Ireland and he said, "I'll do that if one of you will come with me." I had a more flexible schedule. It was like the alumni, older folks, but in a way it was just magical to see that country with him. We have Irish ancestry.
Even so, during the time, he was having a great deal of swelling of his feet, of other things that he couldn't do physically on that trip. When he came home, several things happened and he ended up in the hospital for three weeks. The heart failure was that advanced. As they were trying to treat it and discover how they could do better by it, other consequential things happened in the hospital. It was a vigil and we almost lost him.
That was certainly nothing any of us had ever gone through. Because of that, we had to set up care afterwards. My sister and I thought we've already been through routine of many of these what they call step-down facilities after somebody's been hospitalized, but may not be physically well enough to balance or stand or move or dress themselves. You can relearn that and you're often discharged to short-term stays. We visited every one of those places with my mother, and it was hard.
So we actually chose a place in our town that was also an assisted living place for him to do that recovery. Again, I mentioned that power of attorney. Because we had that, we were able to work with his financial planner and say, "Hey, if we have to pay some money up front, can we do that?" and we'll make sure he knows that, but this is not something my sister and I could just jump forward and plop down a giant deposit.
So that was the first real crisis moment. Although, as I said in 2013, he banged his head on the tennis court falling. Because he's on blood thinner, he had a brain bleed that they didn't catch, even after being checked out. So I knew these things were possible.
I'd never had anything as intense as three weeks in a hospital. It was profoundly difficult and frightening. Just studying him and stabilizing him afterwards was a very hard thing to do. He bounced back, shockingly. But it was a close call, and it was clear he couldn't take care of himself fully afterwards.

Dr. Correa:
You started to allude to it, but this is an important distinction, I think, for all of us to understand, is that when the doctors talk to you about the type of dementia that he was having, that they described it as being related to or as a result of the complications of his medical conditions and the blood flow changes and oxygen access to his brain. How was getting that information and understanding that information helpful or not?

Kitty Eisele:
Well, I would say what was helpful was the relationship with his doctor. Both my parents used the same doctor, who even when they went on Medicare, she maintained the relationship. She was an all-hands-on-deck doctor. So she understood, I think, more in depth what his issues were. She worked with a heart specialist for his heart failure.
But she'd called me. I was on a sabbatical in 2014. She actually called me when I was on the sabbatical. I thought it was about my mom and she said, "No, I'm getting worried about your dad and here's why. Yeah, your mom's health is pretty bad, but your dad, I'm worried about for his forgetting stuff, for balance, and he's missing appointments."
So as it was explained to me, the dementia wasn't the leading problem, but the dementia caused more problems even than the heart failure. The heart failure became very well treated by a heart specialist. But it was a complex set of remedies, pills, blood tests, some limited PT that was heart-healthy, but he also needed occupational therapy after that hospitalization.
He was not able to stand balanced, be at the sink, give himself a shave, easily move things around the kitchen, and yet he was still driving, because he had covered that forgetfulness with, I guess, compensating by picking up on what a conversation would be about and weaving in and out of it as you normally might have, but with just speaking less.
So I don't even know that I was as aware of the cognitive loss, but I had noticed it in terms of hygiene in the house and why hasn't the yard been cleaned up? He loved doing yard work. I don't think I correlated that to dementia until, on my podcast, I interviewed somebody who was an occupational therapist working with people who had dementia, explaining to me how brain loss plays out throughout your body.
I'd always thought of it as memory or cognition or executive function, like planning stuff A to B to C. She said, no, it's balance. It can be taste. It's how receptive your skin can be to heat or cold, if you're not getting the messages as quickly. I think for him, balance was a huge part of it. He fell a lot and he fell hard, and that meant a trip to the ER every time just to get his head checked, or not if every time, certainly very close monitoring, because he'd already had a brain bleed when we didn't think he'd harmed himself.

Dr. Correa:
I think many times we don't necessarily think about the brain just in terms of memory or what most people think of cognition, just like processing thoughts or language. But everything in the world is a signal or a stimulus, and it all has to be processed by your brain.
At the same time, things like the heart and other parts of the body are important, largely, we think, because all those things help take care of the brain. But they are things, when there's dysfunction from the heart or other medical conditions, that can lead to damage over time with the brain. It sounds like that's along the pathway of what occurred with your father.

Kitty Eisele:
Yeah. He had hearing loss and eye trouble. I suspect some of that feedback loop was also like a loss. Even though he had hearing aids, he wouldn't wear them very often. So input to his brain was also muffled.
As far as his dementia and his physicians, we did take him to a neurologist and she couldn't categorize what type of dementia, but nothing presenting in his experience suggested Alzheimer's and certainly didn't suggest Parkinson's. So the assumption was this is frontotemporal dementia, or as much as can be called dementia, is a consequence of him resisting getting a pacemaker even after his heart surgery, that he really had a lot of time where his brain was not getting what it needed.

Dr. Correa:
But sometimes we describe this as a vascular dementia. Maybe what she was describing for you that parts of his brain that were most affected gave him symptoms that looked like frontotemporal dementia. But that's-

Kitty Eisele:
I think vascular. From what I understood, that makes more sense. I think it's shrinking of routes.

Dr. Correa:
Yeah, it can be many different causes that change the blood vessel flow to the brain. It's specific to each medical condition that affects that.
So all of this occurring and changing, and I guess you had the storytelling skillset of working as a journalist and as a storyteller with NPR, how and why did you create the Twenty-Four Seven podcast?

Kitty Eisele:
Partly out of, honestly, sorrow and confusion. This was so extreme. These new experiences were so extreme and so unexpected and so unpredictable. I was like how is it ... I'm trying to do this. For example, he's in the hospital for three weeks. We can't find somebody to give him a shave.
Now it's not that the hospital didn't do a good job. They were just understaffed in certain departments. He was feeling so crummy and also in and out of consciousness, but he kept saying, "I just want to shave."
Well, he couldn't stand up and get out of bed to do it. So my sister and I were trying to find a way to give him a shave in bed. It's really messy and it's really hard to do on someone else. This huge hospital complex had a tiny gift shop with no electric razor, things that you just don't even think would be hard.
I later found Gillette had created this razor that helps you shave someone else or in a very unlikely location where you don't have water. They were piloting this and I said, "Let me try it. I want to find out what you're even thinking about." They had troubleshot all these different elements of what it takes to give someone a shave.
It's complex doing something with warm water to somebody who's not sitting up straight, in a bed, not near a sink, reaching out to try to get to someone's face at the right angle when they have often very soft or tender skin. Just doing that made me think, God, there must be hundreds of thousands of people in care facilities. How are they taken care of?
And so, then I called up the guy who created the razor for Gillette, who was an engineer in England. I was like, "Can you tell me more about this? What was it that you figured out would work?" because it did work, and I was so grateful. But I was thinking, like, normally I'm covering politics and world affairs, but basically my biggest job is getting a razor that I can make work on my dad when he's in bed.
So I realized those are just as important. That gave him a sense of not being in a crummy situation where he wasn't himself. He perked up and felt like he had a little more presence.

Dr. Correa:
The podcast in the beginning, you start effectively almost like an audio diary documenting the pathway and the story. You moved into your own childhood home as you turned things around to raise your own parent above the despair of the cognitive decline and improving his quality of life. How did it impact your relationship starting that off?

Kitty Eisele:
It had been such a hard time in between his recovery from hospitalization. He came home thinking he was all set and he could be back in his house, and there were, again, falls that I hadn't heard about and a really ill-advised road trip that he took on the spur of the moment to go across the Midwest and see some family over Thanksgiving. He was almost at the airport before we figured this out.
At the airport, he lost his iPhone again. He gets on a plane and flies to Minnesota where he has deep roots. He's going to go to somebody's funeral and then fly to Iowa and see some relatives. All of this were ... My sister and I are like, "This is Thanksgiving week. They haven't even called back to say if they're in town. How is it that you're already in Minnesota?" and we don't know if our cousins in Iowa are there. "Oh, I talked to them. They're okay."
So he decided it would be easier and more fun to cancel the flight from Minneapolis to Iowa and just drive. I find out about this the night before. You're still just three months out of the hospital.
Well, he got lost for 12 hours on a highway in the snow on Thanksgiving Day with no phone. All he did was stop at mom and pop truck stops and ask if he could use their phone and call my cousin. Then my cousin would text me and say, "We're really worried. Your dad hasn't shown up yet. It's been six hours.
We got a call four hours ago from this person in some small town. He got on the phone and he wanted to know how to get to our house, but we can't find out where he rented the car. We don't know where he is. We can't even tell the state police to keep an eye out." That did it. That knocked me over. I was like, "I can't do this anymore. You can't just go wander off."
Ultimately, he turned up at a Target on Black Friday night at like 11:30 at night in Central Iowa and was found driving one of those little cart scooters that you get when you go shopping, drinking a sippy box of wine, because he was having a good time while the Target people had finally located my cousin and said, "We'll stay open until you get here, but we'd like to leave."
So at midnight, two of my relatives pull up in two different cars. They bring an extra driver so one could bring him home and the other one can drive the rental car. My dad thinks it's a lark. I'm like, "Everyone has been tearing their hair out all through Thanksgiving because we thought you died on some icy road, because what should have been a three and a half-hour trip was now 12."
So that's what really pushed me to get pushy on him. My sister and I asked him to go to the assisted living place in our town where he'd already done rehab and spend the winter there. We could not manage him anymore. I mean the heat had gone out, the furnace was out, and he didn't understand why it was cold, but he just put on coats. There were damaged kitchen equipment because he'd try to broil a pack of spare ribs, but he forgets to take the plastic off. So he'd be broiling something that had shriveled into a fire hazard. Many, many, many things like that.
So he spent the winter at this wonderful facility that I would move into tomorrow, just because it's so nice, and the care was terrific. But at the end of that, we agreed to four months. He said, "I'm going to move or I'm going to go home. I'm not going to stay here."
A family friend checked him out, he's a nurse, and said, "I think you ought to bring him home and maybe hire the person who took care of this woman's husband with Parkinson's and just see how it goes. He may not have a lot of time left."
By that point, I had been reading a lot of death and dying books, and particularly Atul Gawande, Being Mortal, and trying to figure out how do I measure what should I do? My ultimate conclusion was what keeps him happy and what keeps him safe? I thought he's telling us he'd be happiest in his house that he's lived in for 50 years watching a ballgame, having a beer, looking out the window at his azaleas, and being in a place that's safe, because his wife has died and now he's moved to a place where he has to have dinner with strangers every day, and his mind isn't working right.
So I just decided it was becoming much easier just to live here. I rented my apartment to somebody else and basically took my clothes and moved back into my childhood house, not thinking it would go for another three and a half years. Then COVID hit. I'm really grateful that we were able to give him an end time that was not traumatic because of COVID, and it was loving, but it really took everything out of all of us.

Dr. Correa:
Oh, I imagine so. A lot of your episodes focus and highlight on some of the key reality checks that you learned along the way. Can you share some of those with us?

Kitty Eisele:
Sure. Some of the things that were puzzling me early on were things like his isolation. I played Scrabble with him almost every night. His dementia was causing problems like reading a book or reading the newspaper even. I think he was having trouble following plots. He didn't want to watch TV shows. But he could play Scrabble because he had an exceptional vocabulary. He'd always played and he loved ... Single words were easy for him to come up with.
But that meant I had to play every night, and I didn't necessarily want to spend every night playing Scrabble. So I played one or two games. He'd play by himself, but I felt obligated to be his entertainment. That is a lot of work.
So that was a question I had. What do people do when they get this isolated? How do you keep your friends in touch, especially when some people find it scary to watch their friends' mental state decline, understandably? But how much do I have to tell them ahead of time?
I became the social secretary to make sure somebody's going to come take you out for dinner or take you out for lunch or bring lunch. But to make sure that that happened, I had to initiate most of it. So I asked other people, like, "What happened to your mom? How did you do that?"
Another former writing teacher of mine had cared for her husband, and because I didn't want to use tape that would put my dad in an undignified position on air, I was limited in what I could audio tape. And so, I focused the thinking on the caregiver and not the person who was declining, because I didn't want to expose him that way.
What I did tape, when you ask about some of the lessons or the reality checks, were things like even getting him breakfast. He'd think he'd had some sort of breakfast, but he hadn't had it. So I would be making sure that he got his egg and toast and make sure he ate it, didn't just spit it out, plenty of Ensure. And so, I would tape things like that. I would tape helping him get to bed at night, because he couldn't always do that very easily.
But activities that suddenly required assistance that you normally wouldn't think about, I would just put the phone on a ledge and say, "Hey, can I tape us doing this?" I told him. Because his parents were writers and he was a writer, I think he was comfortable with it. His own parents had written about family deaths and losses way back in the '30s and '40s.
So I didn't feel like I was being exploitive, but I was judicious in what I wanted to expose of him. But at the same time, every single thing was a new problem to me, the caregiver. And so, when I wanted a reality check, that's when I called someone and said, "How did you deal with this?"
In the first season, there are four guests. When I say guests, I'm asking them to walk me through their experience. One of them was a hospice chaplain who happened to be a friend. Even though he wasn't at hospice level yet, I wanted her to tell me how hospice works, because I don't even know when we're going to get there or how much support I'm going to be able to count on.

Dr. Correa:
Now I'm wondering, it sounds like ... And you said you had a good relationship with your father and your parents, are there parenting or caregiving skills that you learned from them as parents that you turned around to help care for your father?

Kitty Eisele:
I do think that the sense that ... And maybe that for them is grounded in a faith perspective, but the sense of we have human lifespans and we are attentive to people throughout those lifespans, and no one wanted to think of this as a burden or a problem. It is burdensome, definitely. But I do think I'd seen that example in how my mom treated her older family members, my father's parents were deceased. But there was clearly an example of how you helped them at the end of life or even in late life. That was very helpful.
You asked what my lessons were. I think it was a model of attitude as well as, to their credit, planning at least so that we had the adequate tools in an emergency to take care of him financially and legally. So on two fronts, the emotional and attitude maybe framework for doing this and the logistical things pretty much in place but not sufficient. That doesn't mean my attitude was always good at all.
As this progressed, I thought my mom wouldn't have tried to take care of him by herself. That never would've happened, even with a caregiver. She would've come up with another solution. They had looked at assisted living places or long-term planning, but my mom died before that could happen.
As I thought about it, I thought I am putting my health at risk. This is incredibly taxing. But everybody around the country was dealing with COVID, and there really wasn't an option at that point.

Dr. Correa:
I wanted to go back to when you were getting set up in your childhood home-

Kitty Eisele:
Oh God.

Dr. Correa:
... and starting down this journey as a new caregiver. Would there be some sobering and supportive information that you would offer to Kitty at the start?

Kitty Eisele:
Yes, I wrote this down: put your oxygen mask on first. I always thought that was such a cliche. I did not find a whole lot of useful caregiver information or support. It often seemed very anodyne and sort of like, "Take care of yourself. Make sure to get rest." It just seemed like no kidding, but how do I deal with the overwhelming emotional sways I seem to be having with this?
But the idea of making sure I was getting enough recreation, fun, that I had coverage at night so I could go out and do things, and that wasn't always possible. I would've probably asked harder questions of myself in the beginning. I think when you go into these things thinking if we just get this resolved, everything would be safe is maybe not the right attitude. It's a marathon, not a sprint. I didn't know that. I might have paced myself a little more.
I suspect if I knew now, I would've really forced the conversation to say, "I don't know that it's going to be enough to have a part-time caregiver come in and do laundry to make sure you're safe, given the medical conditions you have, just given the pills." I mean I did all the pill sorting every week, then I made sure I gave it to him. But some nights he'd think he hadn't taken his pills and he'd go take two more, and they included sleeping pills, I mean dangerous things.
I would've pushed the conversation earlier to say, "This isn't comfortable for any of us, but I'm really worried and I'm not comfortable having you home alone. I don't think that I can provide that care. Let's talk about what you think would work and can we get to some agreement?"
It's a hard conversation to push, especially when you get along with somebody. Even he understood that we had his best interest at heart and he was like, "Well, I guess you just want to put me in a home." I was like, "Well, first of all, you always said that's what you wanted. Now you change your mind."
I would encourage anybody to not be afraid of conflict and bad moods. I mean I always felt terrible when I made him feel sad or upset. I felt horrible. But some of this stuff, it's not easy, and you just have to face that fact. It's going to be uncomfortable. Somebody's going to be mad or out of sorts. That's okay. It's a hard thing to go through.
My dad was grieving my mom and grieving his own own declining abilities. I do think it's very scary for somebody and very hard to ask them to leave a home, move into a dorm, and live among strangers, especially when their health is weak and their cognition is challenged. It's a lot to ask of someone.

Dr. Correa:
So towards the end of your season one, your father passed. You still had this podcast and this storyline moving forward. As you had time to reflect, how did your perspective and memory of this caregiving journey that you had change with time?

Kitty Eisele:
I still feel like physically I'm coming out of it. I mean it took a good year before I felt like I had some stamina. I think COVID intersected with that, too. My perspective ... In funny ways, I think it was so sad or I felt so sad during much of this, and I was trying to muffle that because I didn't want him to feel bad about me and the complications it caused. I didn't want him to know that this was hard because I wanted him to be happy, and I wasn't comfortable when he wasn't happy.
In some ways, I had to let that be because those are natural emotions when someone's looking at the end of their life. My dad was never an unhappy person, but there were periods in which I thought I saw great sorrow. I kept thinking I have to mitigate that. I have to cheer him up.
So in the lessons I found after he went, when I started turning to other people, I was still trying to pick apart some of what I'd been through. For example, this occupational therapist who helped me define dementia, I hadn't even really asked myself what dementia was. I knew there were different types, and that, as I understood, it was an umbrella term. I'd certainly known people whose family members had had diagnosed Parkinson's and Lewy body dementia.
I actually put on the second season, the first episode, was Patti Davis, the daughter of Ronald Reagan, because she ran caregiver groups for many years after his death. I thought that's really something. First of all, I admire her as a writer, I really do like her writing, and I've read a couple of her books and she occasionally publishes op-eds. She's a very, very talented writer.
But the book she wrote that had just come out after my dad died talked about what complications families go through when someone has a diagnosis of dementia. I found it so insightful and helpful, even though my dad had passed. It suddenly started making sense of things I'd gone through.
So I wanted to talk to her about ... In her case, she has an extremely famous, well-known father whose publicly done something unusual, which is to go public with a diagnosis of Alzheimer's in 1994. Really hadn't been publicized before that. I mean people would hide that. What did it mean to take care of someone who'd been in the public eye and was now clearly not himself? How did her family handle that and how did she handle her own mental emotional state? Because she wrote about it in the book how complex her family dynamic was and how she had to transcend that in order to really be there for him.
I thought what she discovered about the family behavioral dynamics was very insightful and very helpful, and was a way of talking about the consequences of a dementia diagnosis on other family members that I hadn't heard about yet. I mean it's a family disease, comparable to alcoholism. If somebody's behavior has changed dramatically, everyone else's behavior around them has to adjust, or does adjust, but no one tells you that.

Dr. Correa:
Yeah. You've brought this podcast and these different stories to all of us here in the community, but I'm wondering, is there something else that you do and have been doing for yourself in this last year to care for yourself and also to honor your father's memory?

Kitty Eisele:
We planned a fabulous memorial service for him. It all got delayed because of COVID. But it felt really right. It felt like I needed it as much as ... He doesn't know, but I felt like both his friends circle, our family, and the larger community were asking, "Isn't there some service for Al? What are you doing?" We planned it, and it worked beautifully.
It was so deep and meaningful to me because it just felt like him, and that was a huge thing. Even as you ask this right now, I have somebody working with me on some estate paperwork, because it just was too draining. And so, I just hired a friend and said, "You know what? I can't do any more of this by myself. I need help." This is something that many people go through, and it's complicated. It takes a long time.
I wish I could tell you I got a new fitness regime and did all sorts of great things to get back into shape physically, but I didn't. I was so tired that first year that I just thought I'm going to be on the couch every night. And I was working, podcast and a lot of project work for NPR. So me taking care of myself meant not moving out of this house, paid for a long time ago.
So I stayed here and I look out the window and I see foxes and deer and stunning azaleas. This is a very forested area that has extraordinary ... You can't grow a flower here. It's the wrong kind of climate. But you can grow any number of blooming trees. There's a great deal of comfort I've had in being able to work in an office space, which was my bedroom as a child, and look out the window and see animals.
The other thing maybe for your listeners is I planned some emergency vacations. I needed sunlight, and so I decided to start going away, if I could in the winter. I couldn't do that during COVID. But I booked a beach place that I used to go to. One time I booked two weeks. My mood soared. I mean it was just so much easier. I finally had a really nice place. I didn't need to worry about it falling apart on me, which I live in an old house, and had friends come down and stay with me. I had my sister and her daughter come at one point. We just had like, "Let's go have a nice place to be."

Dr. Correa:
You mentioned a negative as, oh, you wish you could have said you got a new fitness routine. But I'd point out that you took action for rest, and rest itself is such an important aspect of even a fitness routine. It's what you needed and, as you mentioned, many caregivers need.

Kitty Eisele:
Oh, do they. Yeah.

Dr. Correa:
I found it touching. You mentioned your father, even later, leaving the assisted living home, said he wanted to be home and look out the windows at his azaleas. You're there now and appreciating and finding restorative energy back from a similar thing that he also looked for.

Kitty Eisele:
You have a beautiful way of bringing new thoughts to me, so I appreciate it.

Dr. Correa:
Thank you so much for your podcast and everything you're doing to really bring this to the forefront. To close out today's episode, Kitty Eisiele shared with us a clip from episode five of her show, Twenty-Four Seven: A Podcast About Caregiving. In this special moment, you'll hear Kitty and her father having a conversation about how he thinks about death and the afterlife. Thank you again, Kitty, for sharing yours and your family's stories with our listeners.

Kitty Eisele:
Does anything really worry you about getting older alone? Do you have a big concern or a fear? You don't have to have it, but I'm just curious for me to understand that.

Albert Eisele:
No, the only concern is that as you get older, the only certainty in life is death. So just a question of how long you have to live and how you will die, whether you die suddenly or in a rest home, or a lingering disease or something.

Kitty Eisele:
Got a preference?

Albert Eisele:
What's that?

Kitty Eisele:
Do you have a preference?

Albert Eisele:
Yes. Sudden death, rest home.

Kitty Eisele:
Without a rest home.

Albert Eisele:
Yeah. Well, even the rest home, I wouldn't want a lingering death, but a quick death.

Kitty Eisele:
Who do you think you'll see after you die?

Albert Eisele:
I don't know. That's a good question. I'm not sure I'll see anybody. I'm not sure that there's a hereafter or not. I don't know.

Kitty Eisele:
But you still go to church and you still find a lot of comfort and solace in that. So can you tell me a little about that?

Albert Eisele:
About going to church? Well, it's a lifelong habit. I've gone to church and I have friends in church as well. I think it helps you adjust to getting older and helps you adjust to life's problems.

Kitty Eisele:
Do you doubt the kinds of things that you found in church about an afterlife, or does it just ... It's all going to be a mystery?

Albert Eisele:
Just skepticism, I guess. Everybody talks about an afterlife, but there's no evidence that there is an afterlife. I don't know.

Kitty Eisele:
Because that's the promise of Catholicism is that there's a next life.

Albert Eisele:
Yeah, but each religion has its own version of afterlife. I guess one of them must be right.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org, and even get the EspaÃ±ol version.
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Journalist, Producer Kitty Eisele’s Honest Recount of Her Time as Caregiver

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