Caregiver Burnout: Lessons and Insights from Kate Washington

In this episode, the brilliant author Kate Washington, who takes us through her incredible journey of caregiving and the profound insights she gained from it, joins us. Kate shares the inspiration behind her book, Already Toast, a raw and honest account of her experience as a caregiver for her husband during his battle with cancer. We highlight the challenges caregivers face, how caregiving is often undervalued in society, and how her writing serves as a voice for caregivers everywhere.

Selma, Zack, and Kate discuss the emotional toll caregiving takes, why setting boundaries is essential, and how caregivers can seek the support they need. Kate also opens up about her next project, focusing on self-rediscovery through swimming holes and finding joy in midlife. This episode offers not just empathy for anyone on the caregiving path, but also a call for systemic change to better support caregivers.

Episode Highlights:
[2:13] - Kate shares her favorite summer activity: exploring hidden swimming holes in California.
[3:54] - How Already Toast came to be: Kate discusses the life-changing events that led her to write the book.
[8:55] - Zack and Kate reflect on the struggles caregivers face and the importance of recognizing their needs.
[12:43] - Kate’s message to caregivers: It’s okay to feel overwhelmed, and your emotions are valid.
[17:09] - A discussion on how literature, specifically Jane Eyre, inspired parts of Kate’s writing.
[20:45] - Kate emphasizes the importance of balancing data with the human stories behind caregiving statistics.
[24:01] - Looking back: Kate shares what she would have done differently on her caregiving journey.

Links & Resources:

Kate Washington’s website: kawashington.com

Already Toast: Caregiving and Burnout in America by Kate Washington – Available wherever books are sold.

Instagram: @washingtonkate 

If you enjoyed this episode, be sure to follow the podcast and leave a review. Remember to check out our website at invisibleemployeeadvocates.com for more resources, and subscribe to our newsletter for updates! We’ll catch you in the next episode.

Transcript

Kate Washington: 0:00

If caregivers are feeling seen and feeling more understanding of their own emotions after reading the book, then I feel like I've done my job. And as you say, there's 100 other things that I'd like people to take away from it, and I would love policy makers to take things away from it, or, you know, people who are doing HR to take things away from it. About how to support caregivers through laws, through benefits, through all kinds of things. But what really means the most is to know that caregivers don't feel as alone and as unseen after they've read them.

Jodi Krangle: 0:35

Did you know that in 2020 there were 53 million caregivers in the United States, and by 2025, this number is expected to grow to 62, point 5,000,073% of these caregivers also have a job. They are called Working caregivers, and they are invisible because they don't talk about their caregiving challenges. Working caregivers, the invisible employees is a podcast that will show you how to support working caregivers. Join Selma Archer and Zack Demopolis on the working caregivers the invisible employees podcast as they show you how to support working caregivers.

Zack Demopoulos: 1:21

Welcome Back to Our Podcast, working caregivers, the invisible employees. And as you know, we love to spotlight people who are making a huge difference in the care economy. And Selma, how you doing good? To see you.

Selma Archer: 1:35

Great. How about you?

Zack Demopoulos: 1:37

I'm doing fantastic. So Selma, Archer, Zach dimopo is here. We have a great author with us today, and I read this author's book already toast, which is incredible, catchy title. Can't wait to hear more about this, but I read it, I think, over a couple of years ago when I was doing a lot of research as a care advocate. And this book is incredible when it comes to really giving you insight into what a caregiver's life is all about, but much, much more. And so we're really excited to delve into this, but before we do that, let's bring Kate Washington up on here with us. Hey Kate,

Kate Washington: 2:11

Hi. Thanks so much for having me

Zack Demopoulos: 2:13

pleasure and honor. Thank you for being here. So let's we like to start off by by asking you just, kind of a question about you, if you don't mind, it's been a hot summer out there. So what's something kind of fun or interesting you'd like to share with our audience that you've been working on this summer?

Kate Washington: 2:30

Well, you know, I live in Sacramento, California, and California is known as a dry, hot place a lot of the time, but my favorite aspect of my area is that we have dozens of rivers and amazing swimming holes and little hidden gems in the mountains and beyond that you can go out to. And so that's kind of my passion. And my biggest like interest in the summer is taking the day and getting to a river and getting in it. It's my favorite thing. And I've been working, actually, like, on a longer project about swimming holes and wild swimming and self rediscovery. Wow, that's

Zack Demopoulos: 3:04

really cool. I like that. That's really cool. I'm trying to remember the Spanish name for swimming holes. When we were in Mexico with a fam on a family trip, we went. We went to a couple, oh, the cenotes. Yes, yes, yes. Incredible. Cool, refreshing. Some of them a little scary.

Kate Washington: 3:24

I really want to visit those to have an added chance.

Zack Demopoulos: 3:27

You got to add that to your content. Yeah? So, yeah, you have to keep us up to date with that, with that, with that project that sounds amazing. Let's talk about this book. And again, it's an amazing eye catching title. You had me right away, I bought it just, just, just by the title alone. I'm like, I've got to meet the author that wrote this. So, okay, tell us a little bit about, you know, how you came about writing this book, why you wrote it, and and tell us about the title. Sure.

Kate Washington: 3:55

So the book is really the story of my caregiving for my now former husband in the toughest years were 2015 and 2016 he had really severe lymphoma and a bone marrow transplant that left him, at the time, profoundly disabled. He's now recovered his independence, I'm thankful to say. But it was a very, very difficult journey for both of us, and took me really by surprise, and I was thrust into more than full time caregiving for, you know, over two years, really, I have always been a writer. I've been a freelance writer for much of my career, for 20 years, and a lot of how I coped, you know, even in the hospital bedside, when he was in the hospital for more than four months, was writing about it, and I also wanted to be reading about trying to understand why this experience of intense caregiving was so difficult and so all consuming. I have a lot of privilege. We live close to the hospital. We have family support, and still, I was just frazzled and at the end of my rope, and I was trying to figure out. Why that was and so essentially, as time went on, I evolved toward writing the book that I wanted to read to explain the experience of caregiving to me at the time that I was going through it, what I tried to do was weave together my story with reporting on the social conditions, the economic conditions around caregiving, culturally, why it's often skews much more toward women, what the values of caregiving are in our culture, and why it's so often devalued or not valued at all. So I tried to not just make it a memoir of caregiving, but also an explanation and a cultural critique of the phenomenon of caregiving, which I think is often so hidden. And as to the title, where that comes from is maybe about a month after my husband, Brad, was discharged from his bone marrow transplant, and mind you, he went home blind, unable to eat, severely immune compromised, unable to walk. He'd been hospitalized for four and a half months, he hadn't seen our kids for three months of that. We had young kids at the time as well, and when he came home, his doctor said to me, he needs 24 hour care. He can't be left alone even for a minute. And I said, you know, that's impossible. That's impossible for a person to do. It's medically ordered, but it's impossible. And there's no insurance support for paying in home caregivers or anything. We dipped into savings and got, you know, in home caregivers. But it was a very challenging time because, you know, I was managing in home caregivers as employees. I was managing his health, I was managing the needs of two kids who were on summer vacation and a lot of other things. And I took him to a follow up appointment on, like, 106 degree day, and was just frazzled at the end of my rope, as I said. And in the appointment, I just started to cry, and I just sat there, kind of with tears just rolling down my face, and the doctor looked at me, and he said, Are you taking care of yourself? Because if you don't take care of yourself, you can't take care of him. And I thought, I mean, I didn't really say anything, but I kind of went from sad to mad because I thought, you know, why are you putting that taking care of myself on my to do list? My to do list is already 1000 miles long, and I'm sure many of your listeners will know exactly how that feels, of like putting your own we hear self care all the time, but it's at the end of the list for so many of us, because it has to be, because other people's needs are more urgent and so, but I'm a good rule follower, and so I went home and I Googled to look for like caregiving support groups and caregiving resources. But what ended up happening was that Google auto populated my search with caregiver burnout, and I clicked, and it took me to a quiz, and I took the quiz, and the result that I got was, you're already toast. And I literally, because I was already working on some writing at the time, I think I literally tweeted that day like, Well, I found my book title, and, you know, it stayed the book title through years of working on pitching the book and, like, marketing meetings, about the book and all kinds of things. And I'm happy it did, because for me, it really conveys the feeling that so many caregivers reach almost before they even identify as caregivers. You know, it's hard for a lot of people to take on that identity and say, like, that's what I'm doing. I'm a caregiver. I spend my 25 hours a week as a caregiver, instead of on leisure or something, they don't claim it as an identity or understand that that's the feeling of pressure that's, you know, pushing them to the brink of burnout. And so they reach burnout before they even come to grips with where they are in their journey as a caregiver, and no shame to people, I think it's just so often invisible and just like you're just doing what's expected of you as a daughter, as a sister, as a son, as a parent, as a as a spouse, because somebody needs the help.

Zack Demopoulos: 8:55

That's where I feel your book and why we want we're so excited to have you here, because most of our listeners are leaders, HR benefits people, and yes, most of them probably have a caregiving experience, and maybe that's why they're interested. But those that don't you know, they probably would say, why would I want to read this book? And you just gave 100 reasons as to why somebody should be better prepared. And just one other quick comment, I've been talking to as many providers, doctors as possible every time I'm with them, about you guys need to do a little bit better job with two things. One, asking questions like you do in your normal pre doctor visit. You know how they ask you, have you feeling depressed? Have you had any arguments with your spouse? Well, they should ask, Are you a caregiver, you know, and are you feeling any burnout, or something like that? And then the second thing is to actually have a conversation with you in the in the doctor's visit, you know, when you reflect back now, what would have been a better way for that physician to have addressed that with you?

Kate Washington: 9:57

Well, I mean, I think I would step back even from the. Physician's responsibility in that one appointment, and say that I've heard about some clinics or things, especially for things like dementia, Alzheimer's, I think there's starting to be places that are looking at a patient, not just as an individual patient, but as a member of a family system and a member of a care team, and including the caregiver, not only in care decisions, but also in treatment and in assessment like, I think, something that people in cancer clinics in, you know, Parkinson's geriatricians, doctors who are treating ongoing, either severe or chronic conditions, it would be absolutely revolutionary if it became the standard practice to do a just a quick caregiver wellness assessment whenever somebody's accompanying a loved one to a doctor's appointment. Wouldn't even have to be more than two minutes to ask like, three or four basic questions about caregiver wellness and whether they're coping because the demands on caregivers are, as you know, incredibly high, and they've increased so much, especially in terms of hands on, often highly technical or skilled medical care. You know, people are sent home from the hospital doing wound care and line care and catheter care, you know, things that only a nurse would have done a generation ago, just check in. Like, are you coping with that? How is that going? How is your mental health? How is your physical health? Are you sleeping? Are you eating? Clinics, I think of a wide range of types could include thinking about the wellness of the caregiver as part of the wellness of their patient. So

Selma Archer: 11:44

Kate, in reading your book, first of all, I agree with everything that Zach had said about it. It was just so powerful and gripping and honest. You had a way of writing that actually drew me into the story. I felt like I was on the journey with you, because everything was so vivid and crisp, and you talked about your emotions, and you talked about, you know, what was going on from day to day, and the unexpected events that happened and the setbacks and the milestones, and it was just from the very beginning when I read Your results of the test on Google that said you're already toast to the end. I was hooked. I was hooked. It was amazing. But having said that, I just wondered, from your perspective, in terms of your purpose for writing the book, what is one thing? I'm sure there are many, but what is one thing that you would like the reader to get and walk away with after reading your book. Well, I

Kate Washington: 12:43

think for me, the one thing that I want readers to take away, and particularly readers who are caregivers, which I think is almost all readers, like almost everyone, is either a caregiver. Now was one or will be someday, so, but I specifically mean, you know, active caregivers are people who have experience with those challenges, you know, and trust me, I'm incredibly flattered when people in that world are able to read my book, because I know how little time there is for anything extra, so I take it as a very high compliment. You know, whenever I hear from a caregiver because they've not only taken the time to read the book, but also reached out out to me, and it's so gratifying. What I would love for those readers to take away, and I've, you know, been so honored to hear from many people who have taken this away, is validation. I want them to know that their emotions around caregiving are valid that it's valid to feel you want them to get well. You want things to be better. You want to take care of them at the same time. It's totally valid to be angry, to sometimes be resentful, to be fearful, to have negative feelings around caregiving that you maybe didn't choose. And if caregivers are feeling seen and feeling more understanding of their own emotions after reading the book, then I feel like I've done my job. And as you say, there's 100 other things that I'd like people to take away from it, and I would love policy makers to take things away from it, or, you know, people who are doing HR to take things away from about how to support caregivers, through laws, through benefits, through all kinds of things, but what really means the most is to know that caregivers don't feel as alone and as unseen after they've read my book. I was reading

Selma Archer: 14:38

in your book, you did do some things to try and help yourself in terms of the emotional trying to have emotional outlets for yourself, and take time off and try to get some space to yourself. What exactly would you recommend to someone that's that's on that journey right now, things that maybe worked for you, things that maybe didn't work so well? What would. You suggest to someone that's in your shoes right now,

Kate Washington: 15:04

I would say that the more honest you can be about your with your inner circle, about your needs and asking for help, the better and let people step in and support you. Let people step in and support you, maybe before you think it's a crisis, so that it doesn't get to the point of being a crisis. Ask, you know, it's hard to ask for help, so many of us have challenges with it. We live in this individualistic society. We don't want to admit that we're flailing. But you know, it's not you, it's the system. It's a system that sets caregivers up to fail by not providing enough underpinnings or support for us. There's no shame in needing help when you are in a completely untenable situation where somebody tells you you need to be watching an ill person 24 hours a day because you need to close your eyes and sleep or you'll be unable to continue right? So get help, get support where you can rely on your community. Rely on your people. You know, I was fortunate to have a lot of community pitching in, and now that I'm no longer in need of it, I do try to pay it forward. If you have access to mental health support services, to therapy, and I know that's not something everybody has access to, or time, time or money for, but if you have that access or can use, like an EAP through your work or social services through a hospital, having a space that's just for yourself, where you can express your emotions and where you're the at the center, instead of your loved one or care recipient being at the center of The needs, like because your needs are totally valid also. So if you can get that kind of support or a support group, rely on friends and get as much sleep as you can. Wow, that's

Zack Demopoulos: 16:53

great, Kate. Thank you for sharing that. Listeners. If you think you know Kate, just in this short interview, is impressing you. You really do need to read this book. Yeah, Selma, you did share with me that you loved, also the literary

Selma Archer: 17:09

I thought that the references to the Victorian literature, Jane Eyre and it was just unbelievable. It was brilliant. It was how I mean, how did you think of that, because when I was going to high school, Jane Eyre was, like a prerequisite. I was an English major. That was, you know, a book that was on the list. You had to read it, you had to understand it, you had to report about it. And I never, all that time, ever noticed all the caregiving that was in that book. I had no idea until I read your book, it's like, she's absolutely right. How did I miss that? Could you talk just a little bit about that?

Kate Washington: 17:46

I missed it too. And I wrote about Jane Eyre in my PhD dissertation. So you are not alone. I have a PhD in Victorian literature, and I didn't really think about the, you know, care in Victorian literature, and what a major part of it is, that is. And then when I started rereading these books that were kind of my comfort reads, When I was in the middle of it, and I was like, oh my goodness, like the caregiving is everywhere, which makes sense, because most care was not taking place in hospitals or under the auspices of doctors. In the Victorian era, it was done at home, and that's where we got a lot of our notions about what a good caregiver is, what a good wife caregiver or daughter as a caregiver is, you know, the angel in the house is this Victorian trope. Really, I'm so grateful to you for asking about that, because it was an important part of the book to me, and something that really drew on, you know, an academic background. I don't work as an academic. I don't I no longer am in that field, but that field is near and dear to me, and I was excited to write about those cultural elements of caregiving, and like the kind of the cultural history of caregiving through literary analysis.

Selma Archer: 18:53

That was great. Thanks. Absolutely.

Zack Demopoulos: 18:56

Someone was really excited about that, and I thought it was very unique in the approach, because I've read quite a few books on caregiving, and I thought that was unique. And as a non literary guy, I will say the analogies helped, helped quite a bit. Okay, they really did so good job. Kate, thanks. I do want to jump in. There's so many parts of this book. We don't have that much time, but there is one section, and I love the way you this section is called Take care now. And you talk about how four months you're with, you know, Brad. And I mean, I was one week with my father when he was in intensive care. I can't even imagine what four months is like. I can't it's just incredible, many, many interactions with Park attendance, parking attendance, if it's not automated. And you talk about how the parking attendant said Take care now, and how that really hits you. So I thought that was great. But there's a, there's a part in here that I just want to read out and get some more insight into it, because it's, it's an important piece that Selma and I really focus on whenever we're talking to business leaders, even even in government, numbers matter. Data matters, right? Let's face it, at the end of the day. So what Selma and I are trying to do with our book, and what you did very well with your book, is you want to humanize that somewhat. And your statement here, I just want to read it. It really hit me, and I just want to get a little bit more insight. But you said, not knowing what lies ahead, living with the dread of loss, unable to attend to one's basic needs because of the urgency of another person's those are the aspects of caregiving that can't be conveyed by all the statistics in the world. Can you share a little more about that? Because the statistics in itself are pretty profound, but what you just shared there, you're right. Statistics don't say anything about your story. Yeah,

Kate Washington: 20:45

I guess I think of it as you know. The latest numbers, and these are almost five years old at this point, are that there are 53 million caregivers in the US. It's a huge number. It's like so big, it's impossible to wrap your mind around. But then you think of that is like, 53 million stories of somebody who's worried about their mom, who's seen a brother not be able to take care of themselves, and is trying to advocate to get them like, maybe the mental health care they need. Like, there's literally 53 million stories behind that, and every single one of us, every HR manager, every you know, CEO, every listener of yours, everyone is somebody who, if they haven't been a caregiver, who's seen in their family something that has happened, you know, where you're worried about somebody, where you're thinking you're going to lose a loved one, like illness and disability and grief and loss. Touch us all. It's what makes us really human. The statistics, as you say, are so important. But what I hope to do in this book, you know, with my own story, but also to convey about how other people are experiencing this like very deeply human, deeply important kind of relationship of caring for each other, is that, you know, it comes for us all, and we all have a story, you know, mine, some of some of the intensity of what I wrote, There was came from, you know, there was a solid month of the time that Brad was in the hospital, when it seemed we were pretty sure he was going to die. It really seemed like he was going to die, and including like his doctors were conveying that message, you know, and I was kind of trying to hide it from my kids, and I was like, you know, just constantly living, not knowing if I could draw a breast, not knowing what was going to happen, thinking all the time about plan A, plan B. What am I am I going to be like, you know, a widowed mother to these two kids. How am I going to cope? You know, his parents were living with us to help out at the time. You know, how do I help and support them? Who's going to support me? How is this going to happen? You know, those kinds of uncertainties are unbelievably stressful, and whether it's caregiving or a similar situation or not, I think everyone listening can identify with that feeling of like, I don't know what's coming next. I'm scared, and I still have to keep putting one foot in front of the other and doing this thing that needs to get done. And so that's, you know, I think where that passage that you read came from. We got

Zack Demopoulos: 23:29

time for one more Selma.

Selma Archer: 23:30

Well, just picking up from what you just said, I was going to ask another question, but I want to ask this question, you know why? And that is looking back over your caregiver journey from day one, from the beginning, when you went to the doctor with your husband and he gave the diagnosis. And looking back now that your journey is over and you've moved on with your life, what is one thing you would have done differently had you known then what you know now?

Kate Washington: 24:01

Oh, my goodness. I'm not sure if I can narrow it down to just one. I would have set boundaries around the time and emotional space that I had to give for myself earlier, because I kind of jumped all in really early on. It's sort of like I didn't know that it was going to be a marathon, you know, I thought it was going to be a sprint. And I started out sprinting, and like a lot of people do, you know, you kind of then falter in the late miles. Burnout. Said, Yeah, and I mean, and I feel like there were a lot of things that I was able to continue doing that that served me well, you know, I kept exercising or trying to stay in touch with friends or things like that. But I think just knowing, also knowing like this, like experience is almost universal, that I wasn't alone like I think I would have liked to have known that or understood that a little bit better, and sought kind of connection and support specifically around the care. Giving earlier on, because I was seeking connection and support around his diagnosis and our fears around the diagnosis. But that's different from support for caregiving, specifically, if that makes sense, a lot of the early things that I was doing especially were like for him and for the crisis of our family, which was also appropriate and needed, but I put myself last for a really long time, and I think that that led to some real fallout for me that I had to it took me a long time to unravel from and kind of recover from.

Zack Demopoulos: 25:37

I think we can all relate to that. So it's great to hear you reiterate, and you say, validation. I feel very validated after reading your book. So you achieve that extremely on your website. You talk about that, you'll speak in front organizations. I hope listeners, organizations will take you up on that, because you've got a great story to tell. What's next for K Washington, besides exploring swimming holes.

Kate Washington: 26:01

Well, actually, I am working on a second book that is partly inspired by exploring the swimming holes. It's not a guidebook, but it's a book about kind of self rediscovery and refining joy at midlife. I turned 50 not very long ago, and my project leading up to turning 50 was going to 50 different swimming holes and sort of how that helped me, like, find some change in life. I'm working on that I continue to be a freelance my two daughters bring me a huge amount of joy. My older one, they were they were nine and five when their dad was diagnosed, and they're now a sophomore in college and high school, respectively. So times have changed and moved on. They keep me busy and engaged, and so does my work and my writing. So that's I'm just continuing on, but I still, yeah, love connecting with and talking with caregivers and talking about that journey, because I think it's really an under recognized, growing crisis in the US. There's a crisis of care. It's already here. It's only growing, and we need to reckon with it.

Zack Demopoulos: 27:06

Speaking of connections, what's the best way people can connect with you through my

Kate Washington: 27:10

website. K A washington.com my book is available pretty much everywhere. Online. You can find me on, you know, various social media. Probably the easiest way right now is Instagram at Washington cake

Selma Archer: 27:23

so awesome. Well, please don't stop riding cake, because you're amazing.

Kate Washington: 27:27

Thank you. You

Zack Demopoulos: 27:29

do have a gift for sure, and thank you for sharing it with us, and thank you for your time. It's such a pleasure.

Kate Washington: 27:34

Thank you so much for having me. I appreciate it.

Jodi Krangle: 27:40

Thank you for tuning in. Be sure to catch new episodes of working caregivers the invisible employees podcast every other Tuesday. Please also visit our website, invisible employee advocates.com to subscribe to our newsletter, purchase our book and learn more about how we can help you strengthen your workplace to become more supportive of Working caregivers you