The Hidden Struggles of Caregiving and Dangers of Burnout

"I was feeling angry, I was feeling resentful." - Kate Washington

JJ and Natalie sit down with author Kate Washington to uncover the emotional, financial, and mental health challenges of caregiving. Kate shares her personal journey of caring for both her mother and husband, revealing the unseen struggles caregivers face, from healthcare system hurdles to burnout and grief. Kate and the sisters, JJ and Natalie reflect on their own caregiving experiences, highlighting family dynamics, systemic issues, and the path toward healing.

🔹 The emotional toll of caregiving
🔹 Navigating healthcare challenges
🔹 The reality of caregiver burnout
🔹 Finding joy amidst the struggle

About Kate Washington:

Kate Washington is the author of Already Toast: Caregiving and Burnout In America (Beacon Press, 2021) and a frequent speaker on the systemic challenges facing family caregivers. Her writing has appeared in The New York Times, TIME, Eater, Catapult, and many other publications. She holds a Ph.D. in Victorian literature from Stanford University and lives in Sacramento with her two daughters, one very friendly dog, and one very unfriendly cat.

Social Media

Website: www.kawashington.com

Twitter: @washingtonkate

Instagram: @washingtonkate

Facebook: facebook.com/katewashington

LinkedIn: linkedin.com/in/katewashington/

Books/E-Book/Resource: https://www.penguinrandomhouse.com/books/659447/already-toast-by-kate-washington/ 

https://www.amazon.com/gp/product/0807055522

Other Links to Include: Media coverage of Already Toast: https://www.beacon.org/Already-Toast-P1645.aspx

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#CaregiverSupport #ConfessionsOfAReluctantCaregiver #KateWashington #MentalHealth #CaregiverBurnout #FamilyCaregiving

Transcript

0:00

Hey guys, it's your favorite sisters with the confessions of a reluctant caregiver podcast. On the show, you'll hear caregivers confessing the good, the bad, and the completely unexpected. You're guaranteed to relate, be inspired, leave with helpful tips and resources, and of course, laugh. Now, let's jump right in to today's guest confession. You know, we were bantering back and with our guest, but you're dancing. I know, I'm kind of swaying in the wind. Remember that movie with Jodie Foster? Tay in the Wind? Tay in the I knew you were going to say Tay in the Wind. I love that movie. I don't remember Tay in the Wind. I think it was just you who watched it. you always asked me. Liam Neeson and Tay Oh, that's right, because it was so beautiful. Was it the name of the piano? No, that was in mute? No, that was... Well, that's not this podcast. Moving on. So I'm going to tell you right now. We were talking with our guest for today a little bit before and we were talking about the challenges. You just had a call from mom. That's going to be seven episode. Yes. that was a hard thing. And JJ said, you know, I'm probably going to start crying and walk away and go have a drink. And then our guest was so generous and was like, it's only 830 here, but it's never too early. it's in a lack of attitude. Spoken like a true caregiver. So let's roll. Everybody's like, I want to hear what she has to say. Because she knows that she's drinking tequila with some toast. can feel it. she's like, no, guys. So I got to tell you, let me tell you our guest this today, because this is fun. And I'm going to tell you why. So her name is Kate Washington. And Kate is an author. She's many other things. But I'm going to tell you the name of her book, because when I saw it online, it cracked me up. It's called Already Toast. And it's burnt toast too. It is burnt toast. It's Already Toast, Caregiving and Burnout in America. sometimes I feel like toast, Kate, and I think the name is just perfect. Because I know we've had conversations, I've called and I've been like, I'm toasted, I'm done. Stick a fork in me. I'm done. So perfect. Perfect name. We love it already. And I'm going to say you will not find this in the fiction section of the library. It is totally a nonfiction book. Her story started in 2015. She cared for her now former husband for several years through his treatment for a very rare form of lymphoma and a subsequent near fatal bone marrow transplant. But Kate says she quickly became burned out and frustrated by the demands placed on her as his caregiver. There are lot of reasons for that medical system, everything that goes along with it. says the strains of his ordeal and our caregiving relationship were immense personal and relationship challenges. The couple separated in 2022. Today, she is a voice for the caregiver and a frequent speaker on the challenges facing caregivers. She lives like this too. She lives in Sacramento with her two daughters, one very friendly dog and Kate, one very unfriendly cat. Okay, that's actually really funny. that part. friendly dog and an unfriendly cat. Hey, we are so excited to have you here. Yay! Thanks for coming on. Oh, thank you so much for having me. Oh, so, you know, here's the thing. I see that you've got two daughters, which is clearly we align with that. Is the dog a cat or the dog a cat? Is the dog a girl and is the cat a girl? They're all girls. Yes. Yes. Yes. Love it. Yes. We totally support that. So we always joke. The reason I ask is because we always joke that in our house when we grew up, there were my, poor dad, he had three daughters and even, and he would always say, even the dogs are girls and says no wind for him. Yeah. So it was always, it was a no wind, but we love that because we're all about it. And so of course the first grandchild would be a boy. Thank the Lord. And so. We didn't know what to do with all that mess. But needless to say, he turned out fine. Kate, I'm so happy to have you with us. I met you months ago, and we've been trying to get you on here and to tell your story because it is so unique and one that is not uncommon. And that's the thing. And so I can't wait to start this. So let's jump in. So Kate, tell us a kind of... Tell us about your background. Tell us about growing up, where you're from, all the dates. Like you were born, but then, know, skip the part of the childbirth part. Sure. Well, so I was born and raised in a smallish town called Chico, California that's about an hour and a half north of where I live now. My mom was a computer programmer, which was unusual for her time. I'm 52 now. And my dad was both an almond grower and a lawyer and still does both of those things. Wow. He's turning 80 this month, so he's a real, he will never retire. So he's still an attorney and an almond Yeah, he still does some, yeah, yeah. And my brother is following in his footsteps. My brother moved back home. I have the one sibling. Wait, in the almond farm or the attorney farm? Both. Okay, we like that already. going. Keep going. We actually also, his retirement project was putting in a few acres of olives. So we press olive oil every fall. So that was his retirement project and then he didn't retire. So a lot's happening. yeah. Now we have one to go to California so we can go and do part two on the almond and olive. Yeah, I like this. I like this. Okay, keep going. Yeah, so I... My parents divorced when I was in high school. I went very far away to college. I went to Washington, D.C. I was like excited to leave what felt like a small town. And as you can imagine, that was a real culture shock, but it was an amazing experience. After college, I hightailed it back to California. I went to graduate school and immediately went into a PhD program in Victorian literature. I did that for five years in my 20s and that's where I met my husband. He was also a graduate student in English literature. And what brought us to Sacramento is that he got a job at Sacramento State University. I left academia and went into editing and writing, so I've been a freelance writer for the last 20 years since we moved to Sacramento. First daughter was born in 2005 and then second one in 2009. So as a college student and a high school sophomore. sounds like, I want to say this, but it sounds like a pretty normal life. You're just kind of like, I was born, I have a cool family. I go to college, I get a little crazy, decide to go cross country. I like the part of like, I'm leaving the West Coast to the East Coast. And you're like, yeah, it's about enough of that. Yeah. I'm going to go back. kind of was. Yeah. I mean, that's kind of, that is like the... It feels kind of normal. I go to college, I meet my husband, we have some kids. I do have to ask, so you are a writer before this book. What were your topics on those books? What did you write about previously? this was my first book. okay. I was mainly in like magazine and newspaper journalism as a freelancer and the main part of my work was food writing. So I was a restaurant reviewer for a number of years and a recipe developer and wrote like features about restaurants and food, farming, beverage, whatever I could get my hands on. And then because freelancing is tough, I basically wrote about anything somebody would pay me to write about. I think that may have a correlation to the toast. I have to say, Kate, I don't know. Possibly so, possibly so. You're channeling your inner foodie. I I know. I feel like I would love to be, I had never thought about like when people are like, if you could be another job, if you could have another job. I think it would be like a food tester. Not like the food tester when you're putting it together, but like going to restaurants and just reviewing. But it'd be the whole writing part that I wouldn't Yeah, you would have to assign that task. Anyway, byzones. so, okay, that sounds fun. you've got kids, you're living your life, and caregiving happened. When did it? Where does the... Because typically care happens in a slow burn or it is in a crisis. Well, you know, I got a taste of both, but I'm actually going to back up a little bit and say that I had expectations of providing care to my mother, who after my parents' divorce had moved to Sacramento. So we just happened to move to the city where she already was living. And she had a number of health problems and was also bipolar and really struggled with her mental health. So when my daughters were four years old and an infant, my mom was 64, she really started to have increasing health problems, some as side effects of medication she'd had to be on for her mental health for a long time. And then her mental health really started to deteriorate. So I was expecting to be giving care to my mother for a number of years and kind of expecting to be a sandwiched caregiver with her and... and having my young children. And to be honest, I was kind of dreading that. She wasn't always the easiest. I loved her very much, but she wasn't always the easiest. And then as it turned out, she took her life when my older daughter was four and my younger daughter was six months old. And so I'd done a lot of care and intervention, but of a very different kind. And I wanted to call that out just for any listeners like... I think often caring for people with mental illness is not thought of as part of caregiving, and it absolutely is, and it's a really challenging part of caregiving. So I got kind of that taste of that and really intense grief that was really difficult to cope with, as you might imagine. part of the reason I mention that also is that I think it's sort of part of my caregiving story in the sense that I thought, oh, like, caregiving is done. Very sadly, my mother is gone, but that's who I expected to have an intense care relationship with. Like, for a long time, I really thought I would be taking care of her. And that changed in an instant. But then my husband got really severely sick only about four years later. So... Let me ask you a question. I was still reeling from the grief, honestly, by the time he got sick. Yeah, I think... question is good because I do want to back up because Natalie and I are, think, talking about mental health is really important because those caregivers, especially people with mental health issues or substance abuse issues, are sometimes not recognized and those are some of the hardest, that's some of the hardest caregiving that people have to And there's so much stigma around it and I think I'm so grateful to you for bringing this up because in our efforts to try to find diverse caregivers to share their experiences, know, mental illness, there's so many people that care for people with mental illness and support them. And a lot of people don't see themselves as caregivers for that person, because they're like, I'm just trying to help them. And I'm like, And so, it doesn't look like, it's not your traditional accepted quote unquote of a chronic illness, a complex illness. an aging person or a person with a disability, right? Mental illness is very invisible until it shows itself. And it shows itself by going into acute hospitalization, a psychosis, it could be erratic behavior or that sort of thing. So I just think, I can imagine that being very challenging. And at some point, I think we may say, come back and let's talk about that. I'll say that if you're open to that. back and talk about that. Absolutely. And it's certainly something I never recognized as caregiving. I just thought it was conflict with my mom, trying to get her to get help, get seen. There were medical issues that I had to help and support her with. But the idea of caregiving as part of my life wasn't really on my radar. And I think there's so many kinds of caregiving, to your point, about mental illness or substance, caring for folks with substance abuse. abuse issues, so many kinds of caregiving that people don't even recognize as such. There's financial caregiving, there's the logistics, there's calling the insurance. It's so much more than helping somebody in and out of the shower for their activities of daily living or some of the hands-on things that are very visible as caregiving. I really like that you kind of referred to it as financial caregiving. and helping with your health insurance, caregiving, because it's true. And honestly, there are people who typically get paid to assist in those types of things. Like they're experts. And when you become a caregiver, you suddenly become the expert. You're almost like an HR generalist. Like I have to know everything related to human resources. And God bless those people, because they have to able to fill out all the forms, but also make sure they're not going to get in trouble and all the things are, everybody's doing what they need to do. Everybody's happy so that they So it's, caregiver generalist. I kind of like that. So, you know, I know I'm actually going to take our break right now. It's a little early and that's okay because I want to get into, you had that grief and I want to talk about that grief that you had. And then caregiving said, you're not done yet, lady. We'll be right back. All right, everybody, we are back here with Kate Washington, author of Already Toast. Talking about caregiving and Kate lost her mom and she is grieving. It's been four years and your husband becomes ill. We want to touch a little bit on what that grieving looks like, the state of mind that you're in, because you have two little ones. You have little people. You have little people in your life. I'm assuming that you're working. So tell me a little bit about that scenario. Where are you in your life? right then at that moment when you're getting ready to go into this caregiving mode? Well, I'll tell you, was the actual day my younger daughter started kindergarten was the first inkling we really had of my husband's illness. I was absolutely, I had been absolutely overwhelmed. My brother and I were co-executors of my mom's will. And if you've ever executed in the state, you know it is not for the faint of heart. It took like a year and a half. know, former husband had taken on a much more demanding job just a few months after my mother's death. He became chair of his department with all of the, you know, extra politics and challenges that that comes with. And so I'd kind of like moved over, we'd had a much more egalitarian, I think, balance around parenting and working. And his more demanding job meant that like I took a lot more of that load during his term as the chair. So I was coming out of like, five extremely demanding years of having an infant, having a toddler, being the primary parent, trying to work, though I didn't work as much after my mother's death, in part due to some inheritance, which I want to call out as a privilege that I was extremely fortunate to have when we went into Brad, my ex-husband's illness, because it gave us some reserves against how devastating a major illness can be. By the time Lucy, my younger daughter, was starting kindergarten, I was like, thank goodness, I'm going to have some time. She's going to go to aftercare until her big sister is done at three or whatever the time was. I'm going to have almost full days to write, to work on things, to catch up, to like breathe. I had felt like I had not taken a breath in four years. Take a nap. I remember after my mother died, I was seeing a therapist to help cope with the grief. And she was older than I was. I had this four-year-old and this six-month-old who did not sleep. And she's like, what I really envision for you and what I feel you need is complete rest. And I was like, can you come do the laundry then? Like, there was no rest. Like, I don't know what you're talking your rest. I just looked at her like she was speaking a language from another planet. I had no idea. That's a strike. That could possibly look like. That's publisher's clear. that covered by benefits? complete rest for my mental I'm a freelance writer, so if I don't work, I don't get paid. That's exactly right. And my children go hungry, and CPS gets called, and it's awkward, and people judge you, and it's terrible. So I guess I won't rest. So kindergarten was starting. I am in my kitchen. I had a little desk in my kitchen, and thinking like, OK, what projects am I going to dive into. And Brad comes into the kitchen, he's always like worn a beard and he puts his, has his like fingers on the side of his jaw. And he's like, you know, I have these weird lumps on my jaw. Do you think I should go to the doctor? And I was like, and I looked at him, he'd lost like 30 pounds that year. And he's not a big guy. And you know, he'd been going to the gym more, but I'm like, I'm also the cook. So I know what food we're eating. And I looked at him and I was like, you should definitely go to the doctor. And that was like the first, you mentioned there's the slow burn and the crisis of caregiving. That was my first slow burn caregiving moment with him, where we sort of entered into that world of like, yes, you should find out what's happening. And it took many months for him to get a diagnosis, a lot of stress of like, is this what it is? I was doing research, was, he was, we were both Googling. in an ill-advised way about symptoms and different things. Google is Satan's playground. I mean, sorry Google, but I'm sorry, but it's so takes you down this bad road that, my husband would say, it always takes you to cancer. Like there's never anything to cancer, which is the sad part, which is why you have to be careful with Google. Yes, but it can also take you to like vetted actual, you know, double blind studies that tell you things about very rare diseases or things that you might not, you know, learn about from the doctor. So it is a double edged sword in few ways. And I think that that research and talking to people and like, you know, eventually calling a rare disease society for information part of caregiving is another under recognized portion of caregiving is, you know, information gathering. He finally, in about February, from September to February is how long it takes to get clear biopsy results because he had a couple that were inconclusive. And it turned out to be a very rare form of lymphoma that didn't even have a name. And initially the doctor was like, it could just be watch and wait. We don't really have to treat. We pushed for treatment, pushed for a second opinion. And so that whole process took about nine months or longer. Along the way, he started to cough. We took the girls to Hawaii for spring break because we were like, we've got to get some fun in here. We'd been uncertain about what to tell them before we knew what treatment might look like. There was a denial of the initial treatment that the doctor suggested. The health insurance denied, so we were kind of fighting about that, fighting with them, trying to get some possible treatment going. And we'd had to really push the doctor even to say, like, no, we definitely don't want to just watch and wait. So come May, he's still coughing. It was like this warm day. I was working the garden all day. I make dinner. We're sitting down to dinner. And he kind of yells, come here from the bathroom. I was annoyed because the girls were bickering. They'd had me do their nails, and then they'd smudged them terribly within 30 seconds. So they were like, I need my nails fixed." And they were bickering about that. And dinner was on the table getting cold. And I'm like, where is this guy? Why isn't he coming to sit down at the table? That was like my last moment of like normal annoyance. I go in the bathroom. He is coughing up like massive amounts of blood into a bucket. just like, was horrifying, terrifying. And that was the crisis moment of getting plunged into caregiving where it felt really seriously like we are all of a sudden in the thick of caregiving. So I called a neighbor to come sit with the girls. I was like, help yourself to dinner. don't know why I didn't think to call 911, but I just put him in the front seat of the car and drove through every red light to the hospital. So the ER is like a mile away. So we went into that, was hospitalized. It turned out he'd had a lung tumor growing from the lymphoma that had been on a blood vessel and it ruptured. And it had been missed in all of the diagnostics. They hadn't done a PET scan, which I would have like now, if I were thinking about it, had it to do over, I would have insisted on a PET scan at a much earlier stage. But that kind of plunged us into know, major treatment. He got a collapsed lung from the chemo that he was administered and then he had chemo all that summer. So that was like the summer of 2015. Was him being inpatient for chemo every few weeks. The girls home, me juggling all of that. And you know, the chemo was pretty, pretty effective. So it shrank down all the tumors, everything. By September he was pronounced okay. By mid September, the lumps were back. So that was when... It's heartbreaking. Yeah. And my birthday is in October. And so he started to feel the lumps in September, called the doctor, and he's like, whoa, it'd be very surprising if it were anything like that. And it's like, let's get this man a PET scan. We heard it would be very surprising if so many times. And everyone was always surprised. I never want to hear that phrase again. So I remember getting... We got back the PET scan results. It happened to be on my birthday. So we're out at my birthday dinner. and they had just told him that he would need a bone marrow transplant to have even a chance at survival because this cancer that initially they hadn't wanted to treat was actually extremely aggressive. So that put us into a whole new world of finding a donor. Fortunately, his brother was a match. Going into transplant, he went into the hospital for transplant on the beginning of January of 2016. and he did not come home until mid-May. So, let me ask you this. I hear a lot about this timeline, and I can relate to the timeline. think any caregiver can, because I can tell you February 14th, March the 4th, then April 13th. I can tell you the dates of scans and tests and impactful things around Jason, for example. But if you were to be like, so what was going on with you during those times? How were you feeling? How are you working with the girls? What's the girls' impact on the family, your friends, your extended family? Tell me about that. It's so interesting that you say that about the dates, because I sometimes think like, fixating on the dates is much easier and what happened is so much easier than reflecting on like how painful all of that was. And that, you know, I kind of walled off some of that pain over the time of the caring. You know, it was obviously really shocking and upsetting for the girls. I really tried to focus on making sure that they were still doing, had access to fun things, had access to I took them on some little trips. Some of the time, because all of his chemo was done in the hospital, he would be in the hospital for five days, and so I would take them to the cabin or camping or to the beach for a couple of days at that time just to like, it helped me get out of my head. It helped the three of us have fun and do things. And I remember all of that time as kind of unrelentingly grim. But recently I found some voice memos that I had the girls make when Brad was in the hospital for the bone marrow transplant. And he, at that time, he lost his vision and was so weak and so ill that he couldn't even FaceTime with them or talk on the phone. his appearance would have been upsetting. So this is fast forward to in the time of the bone marrow transplant, because he was really extraordinarily ill. And he didn't see them for close to three months. I think. So I the girls make voice memos that he could listen to. And I stumbled across some of them. And it was the girls in their little kid voices, and now one's in college and one's in high school, but in their little kid voices saying, like, mommy's taking us for a hike, and we're going to go to this, and we're going to do this, and the adventure club is going to this. I was like, oh. Obviously, they're putting good face on it for their dad. But also, I had this moment that really made me cry. I actually kept their childhoods going for them. And that felt like a really high priority to me, but was hard to make happen. But I did make some choices of like spending time with them when I could have been in the hospital with him. But I felt like they needed a parent more. And Brad's parents were with us for a lot of time. He's Canadian and they came from Canada and were here for a long time. So they would spend... they would visit if I were taking the girls away, so he had some support. And that's something I never had to face because Jason and didn't have children. I can't even imagine trying to say to split your time. And the reality is, as parents, the parents would say, these are our children. and we have to find the balance somehow. So typically I know with another couple that had it, the parents focused on the kids even though, Pickles, even though they would, this Pickle family, I love the Pickle family, even though he was sick. He was so sick, but they would put on this, they would divide and conquer to make sure the girls had the least impact that they could try to control, knowing that they would be impacted. Mm-hmm. Yeah, yeah, I tried that to the best that I could. was, you know, increasingly... Like, a lot of my memories of that time are kind of a blur as they relate to me because I really... I did have to kind of wall off that emotion. And, you know, there were multiple times... There were times when Brad was outright given a terminal diagnosis. There were times when I was told he had a 10 % chance of living. for like extended periods. And, you know, I think that I kind of had that walled off feeling in part because like I was trying to pre-grieve or trying to protect myself. And ultimately I think that both was a sign of and like leading to burnout because one of those hallmarks is, you know, losing that empathy, getting into that robotic... state where you're just going through the motions, which is eventually after like a year plus of pretty intense illness and caregiving, you know, I definitely got to that state and it damaged our relationship for sure. Like it was, he was by necessity because he was so ill, completely withdrawn from the relationship. He couldn't help that. But I withdrew from it too, out of self-protection because the whole... ordeal was so painful. And because I felt like if I sat down and felt my feelings, I put this in the book at one point, like I felt like if I sat down and felt my feelings and started to cry, I might never get back up. Like I might just stay in bed. And like I had already had that experience of powering through the grief with my mother because I had really little kids and I couldn't stop to, you know, let my world fall apart. Because the kids were relying on me. Yeah, I I apologize for interrupting. Did you have continue your counseling during this time? I was in therapy. had seen different therapists at different times, but I was seeing a therapist while Brad was ill. And that was really like hard to keep that time open. But it was very much like damage control. was just give me a spaced event. Give me my... space to just like go in there and spew all of the things because I, on top of like the negative emotions that I was feeling, I think this is really common for caregivers and something I want to point to and something I write about in the book, you know, I was feeling angry, I was feeling resentful, I was, you know, frustrated that my life was taken over and put on hold. This was not what I wanted. You know, I, of course, wanted him to have somebody taking care of him, but I didn't want to be told You know, when he came home from the hospital after the bone marrow transplant, the doctor told me I needed to have my eyes on him 24 hours a day. That's literally impossible. I didn't want to give up every other thing in my life, and I was angry about it. But then, because especially as women, we're all socialized to care for other people and to be loving and kind and all of those things, I felt guilty and I felt ashamed about those negative emotions, which were perfectly natural and very common. for caregivers. So there were these layers of emotions and meta-emotions that were all so negative in that I was trying to like stuff down and put away. And therapy gave me an outlet for them. really, I eventually, and this is fast forwarding, but I had to reckon with a lot of those emotions, a lot of unprocessed grief, both from my mother's death and from Brad's illness. years after the fact. Emotions don't go anywhere if you don't process them. And I really had not. That is exactly right. And so I had kind of a little crisis of dealing with all that. Actually, after my husband and I separated, it was sort of the grief of all those things, the impending divorce, the loss, the illness. Because the illness really changed him. So that was a big loss of our relationship as well. Changed him and changed me. You know, I'm going to stop us right there for a break because I'm so grateful to you for saying all the things because my answer was me too. I was pissed. I was mad. I didn't want this. We didn't sign up for this. I didn't sign up for this. We didn't sign up for it. And it had nothing to do with my love for my husband. It doesn't matter. I didn't want it. And there will be so many people who are at home listening to this or watching this not in their head going, yeah, me too. Yeah, this is the only cyclist to hear it. Yeah. They're afraid to say it. Afraid to say it out loud. Because it takes courage to say it because it's so socially unacceptable. Like, my gosh, I can't believe he'd be like that. We'll be right back. All right, everybody, we're back here with Kate Washington. Wow, we have gotten into some. it's mean, Kate, you threw it out there and it is. And you said, you know, there's those feelings as a caregiver, you get angry, you get resentful. There's a lot going on there. And then it brings in, here's the JJ, guilt, shame, it just, there's this hot mess of emotion. And if you don't deal with it, it ain't going away. I want to talk about, because this caregiver burnout thing, you you hear it, it's kind of like, take self-care and do this. But I want to talk about it, because I want people to understand it. and to know that it's okay, but let's talk about it. What were your feelings? We've talked about it a little bit, but tell me what you were experiencing, what the impact was on your life. I felt... Depressed, anxious, really anxious, in part because of the difficulty of the illness. Empty a lot of the time, exhausted. I was not sleeping well, and when I was sleeping, it didn't feel very restful. I was physically clumsy and tight. I got into a place where I was tripping over things, but I didn't have time to go to the doctor if my knee hurt or whatever. And I did keep going to the gym, but I couldn't work out or be in as healthy a place as I would have wanted to be. Just short tempered, short with people, frustrated with, just easily frustrated, short fuse, and just never resting. That feeling of always being on edge, that always being in that kind of fight or flight feeling of like almost trembling all the time because you're so tightly strong and tightly wound. And I'll tell you, you commented at the beginning on the title of my book, it actually comes from taking a quiz on caregiver burnout. Like I had this bad, we were at a bad doctor's appointment and the doctor was like, you have to take better care of yourself because if you don't take care of yourself, you can't take care of him. And I got. I was okay, so I guess that's the only point of me. Like it's not good enough that I take care of myself. Or what if somebody else could take care of me a little bit? Wouldn't that be even better? Wouldn't have an idea. But I went home and I was looking for like resources, but I got the autofill from Google that said caregiver burnout and it took me to a quiz. And when I took the quiz, the result I got was you're already toast. Yeah. And so I saved that. actually tweeted. I was like, I guess I found the title of my memoir as a joke, but then I made it the title of metaphor. I saved that phrase. yeah, was, but I didn't realize I was in it and I didn't realize kind of warning signs and nobody was, you know, nobody's noticing really how the caregiver's doing most of the time. think for a lot of A lot of families, and even for a lot of patients, the family's experience, but even the patient's outcomes would be better if for chronic or really severe acute illnesses, the clinicians took the time to also assess the caregivers instead of saying, OK, well, you need to be at this appointment at this time and this appointment at this time, and you have 24-hour eyes on him, and here's all the medications you'll be administering. When Brad came home from the hospital, had 35 medications all on a different schedule. None of them were on auto renewal. So it was just constant figuring out when to give meds. And when he came home, he was still visually impaired. He's since recovered his vision. But he was functionally blind, couldn't walk, couldn't eat a full diet, all of this after his bone marrow transplant. And it was a very challenging time. That was the worst time for me was when he was at home. really still needing hospital-level care, but had been sent home over my protests. And that's something that I really like to point out, is that this is a systemic issue, the demands placed on caregivers. It's not because your family isn't up to the challenge or you as an individual. you know, just aren't working hard enough. And I think the reason so many caregivers are so exhausted and so burned out is that the health system, which has many strengths, one of its weaknesses is that it's cutting costs. And a way that it can cut costs is by saying like, ooh, what if the people at the house did all of this? That's right. What if instead of having a nurse go flush people's IV lines, we had his wife or his daughter flush the lines or change the catheter or, you know, do the wound care. You know, people are being tasked with things that a generation or two ago a person never would have done. Exactly. And they're being asked to do it over a period of years. The average duration of care in the US is something like four and a half years, and the average number of hours a caregiver puts in is like 25 hours a week. Yeah, and that feels it's higher for a few crisis, it does feel low. But like, that's a huge commitment that people are making without even being asked if they're willing to make it, just because they were with their parents at the appointment for the memory assessment or whatever it might be. Yeah, whoever attends, you have to be the winner. like a winning statement though. They were just expected to do it. Of course you were asked. You were never asked. And think about the pressure that is. Like, think about like the doctors look at you and then think about that because doctors have a level of authority and we have to put our trust in them and if they think I can do it, well, I guess I can do it. Who am I to say I can't do it? And then there's all, you don't know about past experiences. Like that whole last piece is just like, can we just play that over and over and over again? Because you're totally right. And it's why caregivers make up about 600, billion dollars in economic relief and that's exactly who, this is exactly how our system is built on. Because if we actually had to provide the care, the health care system had to provide that level of care, it would collapse the entire system because number one, there's not workforce and number two, there's not funding for it. It would be unaffordable. And so there, everybody just says, okay, and you're right. You know, man. I'm looking because I'm like there's so She's like our soapbox. We're like let's just keep soapbox in here. And I mean, I don't know which one of you is older, but I am a good oldest daughter. And if somebody says you have to do this, I'm like, you know, somebody says jump, say how high, and try my best. I'm sorry, are you people pleaser as well? Just a recovering one, I hope. Me too, we'll see. I am only partially meant. are totally my sister. Yes, Kate, you are you are me the oldest who will people please and we'll do whatever. Whatever it takes. You know, I'll say this. Is there a gold star at the end of this? Can we get a sticker? I can be bought by sticker. Like if you give me a sticker, even if they gave us stickers when we went to the doctor, they give patients, you know, things. But if I had a sticker and I walked down and said, I'm the best caregiver, I'd walk through that lobby and being like, you damn right I am. Here I am. They gave me a sticker. You know, not long ago when my dad had a surgery, my stepmom texted me from the hospital. They did give her a caregiver sticker. It didn't say best caregiver, but it said caregiver as opposed to visitor, which I actually thought was like, that's kind of an important step to recognize that role. Absolutely. And I think there's slow recognition happening in some health systems, hopefully. And I think the pandemic kind of really pointed out how essential the caregiver role is because when we weren't allowed to be there, bedside, it's not great for the patient. A lot of what I try to say about caregiving is, yes, I want to be advocating for caregivers and what a challenging role that is. But the flip side of it is that it's also bad for patients if caregivers are overstressed and can't continue on. Their outcomes aren't going to be as good if there's nobody at home who can take care of them, if there's no support more broadly and more systemically for that role because people need and deserve care. I'm not arguing that caregivers should all walk off the job and be done, but... There just needs to be a better, more integrated form of support. Well, and even heard. Heard. Include them as part of the treatment team. Include them as part of the treatment planning process because I'm to tell you, my husband has memory issues. And when you have chronic pain, you're especially in your husband's, know, he, my husband has chronic pain and then got cancer. And so then throw some meds on top of that. He couldn't tell you. And then also he's a people. He officer as well, so he didn't want to tell anybody he was having a hard time. didn't matter. They'd thrown up that morning before he got there. He was doing just great. I'm like, no you weren't. I just cleaned up your vomit. so, no. I remember having some conversations with my husband, Bedside, where after rounds or something, he would have been sitting up and being like, yep, I'm doing great. And I'm like, look. Why don't you put on the good front for me and tell the doctors how it really is? That's the truth. And I'll tell you this, it made me angry. It made me, and I couldn't figure out, and it still does today. And I love my husband, I think it's really important, and he doesn't listen to this. But it was really... We went to the doctor and he still does it today. He puts on a good front and it makes me, and I told JJ, I called JJ after the appointment, I said, I'm so mad at Jason. And she was like, what's wrong? And I'm like, he doesn't tell the truth when he goes to the doctor. Like, he puts on a glad face and then we walk out and he starts complaining about how he doesn't feel good and complaining sounds mean, but it's the truth, because that's how I hear it. He starts complaining about it. I'm like, literally we just paid this doctor. And like, I have no MD and we could have had this opportunity. We missed it. And I'm like, and then I just want to go back in and he's like, no. And so that's the part I think that's so, so hard. You know, I feel like, I know we at like, We the surface. We just scratched the surface. And I feel like Kate needs to come back. I Because I'm super, super, super disappointed right now that we were at, I mean, we were at the end of our time. Yeah, I know. And so, because there's so much more, Kate, and please promise to say, yes, I will come back. Absolutely, I'd love to. Yeah, and so, because I think the other thing that we didn't even scratch on is we referenced it. You and your husband survived, spoiler alert, and you divorced. And that is a common thing that we talked about before we got started. It's more common than people realize for individuals who are caregiving for a person with a chronic illness, complex illness. I think it's 60%. I saw it, I think it was AARP put it out, 60 % divorce rates. And so, I mean, there are times, and I mentioned to you, Kate, there are times that I just wanted to walk away. Life would be easier if you had, maybe you do need somebody else to care. Maybe I suck bad enough. This is where confessions of a reluctant caregiver came from. I suck so bad, I felt so like I was doing a terrible job. like, forget it. Just I'll walk away. So we're gonna, I wanna pick up the next time, but we're gonna do our questions because I think this is important. Because we should always do sister questions. Yes, sister questions. Okay, Kate is definitely a sister. Okay, Shaeve, what's your question? My best sister. What is your question? I fired you. So question, you, you. You're at a different stage now. How have you reconciled and moved on from burnout? Where did it, I say end, but where did you realize, I can move past this? I actually think it was after we separated and I did some really intensive therapy and some alternative modalities around trauma recovery and some different things. It took me that long though, because we separated in 2022 and the worst of his illness was 2016. So that's a long time. But there were definitely steps along the way and as he became more independent, where I was kind of reckoning with things, but I think it was not until I really fully delved into what had happened in our family and my role, his role... the health system's role, all of it, that I felt more recovered from it. know, things still come up, like I cannot stand the smell of hand sanitizer, for instance. And that's both a hospital response and a pandemic response, but it takes me right back. It's activating. Yeah, totally. Yeah. And so I totally could see that there's, for me, it's not smells, it's certain phrases. It's our... When I go back to the doctor and we sit there and it's just like, my gosh, I'm back here again. And I don't want any here. And of course I'm gonna go, because of course I'm gonna go. It's like so silly, you did not, but then you get in there and you're like, what if they tell us something bad? And so because we associate doctors with bad, not doctors with good, because we're not a preventative health system. We are a reactive health system. And so that's the why. Okay, so here is our fun question because it's my fun question every time and then you'll have a different answer the next time What is your favorite guilty pleasure? What is the thing that you do? And this is guilty pleasures religious might as well be self-care Yeah, but I think guilty pleasure is much more fun. It is what is the thing that you do just for yourself? What is the thing that you do that makes you brings you happiness just for you? So the thing I would not say it's a guilty pleasure at all, but a thing that I do that brings me a lot of happiness. Well, it's anything to do with water. But a couple years ago when I turned 50, I embarked on this project of like going to 50 different swimming holes before I turned 50, like 50 wild places to swim or soak or like hot springs, things like that. that is, I still do that to this day. I made it to the 50, I kept a blog of them. And I'm actually now, I've written an essay about it that came out about a year ago, but I'm... at work on a book about that whole kind of quest. But I also, I still do that. Like I'll take off during the week and go to like a favorite river or something like that during the summer. I'm sad right now because river season is over until next year. But you know, there are always hot springs. And I had, we didn't really have a backyard. We just had kind of this parking area behind the house. So after Brad's illness... And when he was doing better and more stable, I had like a little spa pool put in back there and have the... So my guilty pleasure just like on the daily kind of is like, it costs way too much to heat up that spa, but I do it anyway and am able to soak in there. So having my own little pool and soaking spot is probably my favorite. Even without that, I would say the water, that's our sister, Emily. Her shoes, she just needs a bath. That is her like... She may not have a bull, she'll just crawl in the bath and it's just the water. And she's so peaceful. photos of her toes out because she's 6'1", so she does not fully fit in the bathtub. And so I think that's so funny. But I'm so glad that you said that because we have hot springs here in Virginia. And so I feel like if you've not been to Virginia, it's for lovers. And so you'll love it here in Virginia. And our hot springs are good. And so you are welcome to come here to Virginia. Thank you. I have not been to Virginia since I was in college, since I went to Washington, DC, and I would go to some of the outlying areas for weekends and things Well, you have an honorary sister in Virginia, and you're always welcome in Southwest Virginia. I'm excited to find out more about this. You'll like that. You'll like our hot springs. not going to get out of my bed. That is people come to do that. So, well, you know what? Thank you so much for being with us, Kate. This has been an absolute pleasure. I mean, just absolute lover. And we're going to bring you back because I want to hear more. Like you have so much to give. And I think people are already like, what do you mean we're done? So we will get you back and we'll have a part two with Kate without question. guys, thank you. Thanks so much for listening in. And until we confess again, we will see you next time. Bye bye. Well, friends, that's a wrap on this week's confession. Thanks so much for listening in to the podcast. 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