Kate Washington: On Caregiving & Burnout, part one

Transcript: Kate Washington – on Caregiving & Burnout, part one (Episode 91) 

You’re listening to From One Caregiver to Another. I’m your host, Kay Coughlin. I’m a business coach and an advocate for people with family caregiver responsibilities. I’m a family caregiver for my mother, too, and I just don’t believe that we caregivers have to put ourselves last. I believe that our families, government, and society in general owe us a lot more help than we usually get. And I’m here to help you learn to speak up for yourself so you can live your own life again.

Kay: Hey everybody. Thank you so much for being with me here today on the podcast. I am so excited to tell you that my guest today is Kate Washington, who is the author of a book that came out just a, was it a couple of years ago, Kate?

Kate: A year and a half.

Kay: That is so hard to believe. Yeah. Okay, so it came out in ‘21 then, and it is called “Already Toast: Caregivers and Burnout in America.”

I’m not going to say anything more about it right now other than to tell you that I do think that it is one of the finest books about being a caregiver right now. If you have not read it, I highly, highly recommend it to you. So, Kate, I am delighted that you are here with me today.

Kate: Thank you so much for having me. I’m excited to be here.

Kay: So before we really dive in here, I would love to hear a little bit about you. Obviously, because we’re talking to caregivers, if you could include a little bit about your caregiver journey, that would be helpful as well.

Kate: So, I live in California, in Sacramento. I was born and raised north of here in a small town called Chico. I just turned 50. I have two daughters. They are 17 and 13, and I was a caregiver for my spouse through two kinds of cancer and a really devastating bone marrow transplant. He was first diagnosed with the cancer in 2015 and the transplant was in 2016, so our kids were young, elementary school age at the time.

I was and have been for many years, a freelance writer and editor, so I was not thinking about becoming a caregiver. When I did, it was right around the time my younger daughter was starting kindergarten. And I was kind of thinking like, oh, I’m going to have a lot more time for myself to write and focus on my career.

And then caregiving really took over my life. And after that experience, I went through the caregiving experience and was really looking for guides and help and trying to understand why I was finding it so difficult. And I looked at a lot of books and didn’t necessarily find the explanations that I was looking for. And I kind of wrote this book because it was the book I was hoping to find while I was in the active caregiving experience.

Kay: That makes a lot of sense to me. I will tell you that I had a similar experience when I first started thinking about becoming a caregiver. Now, my situation was much more planned than yours, but I remember Googling how to be a caregiver or how to get help as a caregiver or something like that. And really what came up for me were lists of how to be a better caregiver. And I thought I don’t think there’s any room in here for me as a person.

That was back in 2010 when I was first doing that research to see what I could come up with. All these years later, there’s a little bit more now, but as you say, there’s just not a lot of work out there that gives us our own whole personhood, as people. Mainly we’re treated as caregivers first.

That is one of the things that I appreciate so much about your book, is you do get very real and honest and raw about what it’s like to try to reclaim being a person. Even while you are right in smack in the middle of those caregiver duties.

Kate: Yeah, thank you very much. I really found also that I wasn’t seeing a lot of room for the challenging or mixed emotions that caregiving was evoking for me, which for me was part of the experience. And part of my full personhood was that I, it was taking over so much of my life. And I found that really challenging and a lot of the work that I saw out there, you know, talked about caregiving as inspirational or as like a loving act of service, which it absolutely is and can be. But I think the reality for so many caregivers is more mixed, especially because they’re such constrained choice for a lot of people around entering into caregiving.

Like so many of us just don’t really get a meaningful choice and it kind of sneaks into our lives and takes over before we really realize what’s happened.

Kay: You know, I think that business of being told to focus on the positive, I think that’s everywhere. I think that’s not just in caregiving, but the problem is it’s really magnified for us as caregivers, and I really think one of the things going on there is that everybody else is so uncomfortable that they’re relying on us to make them more comfortable about how difficult the situation is.

I think a lot of that is humans just being humans, but it certainly makes things more difficult. And I will tell you that myself as a caregiver, I don’t really see myself as a nurturer. I’m not much of a cuddler. That’s just not, it’s not how I am. I mean, my kids know that very well. They would laugh if I said that because it’s really true.

And that’s another part of caregiving that I just don’t seem to fit, is the nurturing piece. And it’s been, it’s been a struggle for me.

Kate: That’s so interesting. And you know, I think I faced some of the same things, and I think that gender and gender expectations play a huge role. We haven’t kind of mentioned that yet, but the idea that women will be nurturing, that women will be self-sacrificing, that it’s selfish to demand or need our own space, and that we exist to serve others as caregivers, I think really plays into all of these dynamics.

And what makes it so challenging, particularly for, for female care caregivers.

Kay: I agree and, and of course, and one of the things that you do bring up in your book is the concept of “human giver syndrome,” which has completely changed my work. I talk about it quite a lot in all my work and here on the podcast.

What did it do for you, Kate, to learn that someone had named this ancient set of beliefs that is really so painful for so many of us to live?

Kate: Yeah, I found it to be kind of an amazing moment of recognition. And that was not a term that I encountered until after the bulk of my caregiving responsibilities had eased, and when I was in the writing process for my book, so I wasn’t aware of it as I was caregiving. But another set of ideas that I was very aware of, one of the kind of strands of my book that plays into my own background in academia.

Many years ago I got a PhD in Victorian literature. So I read a lot of Victorian books and there’s a concept from the Victorian era called the “angel in the house,” which is the idea that women are there to make things light and bright and comfortable and to ease the way for the men who will then go out into the public sphere, and the women will be the angels of the domestic sphere.

And I mean that in the Victorian era was seen as a positive thing. Whereas Kate Manne, the philosopher who writes about human giver syndrome very much is mounting a feminist critique of the idea that women exist to serve the human beings, which largely map on to men.

So the ideas undergirding human giver syndrome were familiar to me, but the the way it was put into a single phrase felt like a bit of a lightning bolt when I first encountered it. But it was very, very familiar from, you know, Victorian gender politics, from gender politics I observed in my own life from things that I felt as moments of erasure as a caregiver. When people would, for instance, my husband and I have never had the same last name, and people would simply call me Mrs. his-last-name without ever asking if I was my own person.

You know, just assume I was an appendage to and in service of him, which I found painful and difficult and often, you know, got pretty mad about at the time.

Kay: I have to tell you that after I read your book the first time I went back and tried to read “Jane Eyre.” Well, I hadn’t read it in, you know, probably 30 years and I could not read it, uh, because I couldn’t unsee, which is not really fair, right, that’s a modern lens, but I could not unsee seeing it through your writing. So maybe you ruined “Jane Eyre” for me! Maybe not.

Kate: If I may, I should maybe back up and say for those who haven’t read the book, my book has kind of three major strands. One is memoir and is the story of my life as a caregiver. The second is cultural critique that focuses a lot on literary and other cultural representations of caregivers, particularly in Victorian novels such as “Jane Eyre”. And the third is really reporting that contextualizes the experience of caregiving in America today, like with facts and figures, the difficulties economically for caregivers, the, you know, vast sweep of how many caregivers. There are 53 million of us.

So I was trying to place all of these things in context and weave them together, and that’s why “Jane Eyre” comes up, but so does my own story. And so does kind of a look more broadly at like the sociological position of caregivers in America today.

Kay: Yeah, and I’d like to clarify something, Kate, the way you described your book there makes it sound like it’s difficult to read. And what I want to tell anyone listening to this is, it is a fantastic read.

You know, something I shared with you before we started recording is the, one of the reasons that I enjoyed reading it so much is that I would get completely drawn into the story, almost unable to put the book down, feeling very emotional.

And then you’d do me a huge favor and you would throw in some research, so almost like, I got a chance to breathe. So if you, if you’re listening to this and you haven’t read the book, it is one of the top recommendations that I make in my work and even to friends who are caregivers.

Kate: Thank you. That’s, that’s so kind.

Kay: I’d like to talk for a minute if I can about the isolation of being a caregiver. You said at one point in the book, and I’m quoting from you here, “I was lonely. Even though being alone, preferably with a book, used to be my favorite thing.”

So, Kate, feeling isolated is such a problem for caregivers. It might be, you know, if there were a list of top three problems, I’m sure it would, would be on the list. Through your experience or your research, did you get a sense of why it is that isolation is such a huge problem?

Kate: That’s a great question. I mean, I can speak to it personally and also a little bit more broadly. You know, I do think that we have this very individualist culture in America that teaches people to keep our own problems behind closed doors. Teaches people often not to ask for help.

This is sort of part of the culture around caregiving is that, it’s like this is a family thing. We work through it in within our family, and that really isolates caregivers because if you’re struggling on alone, it is very difficult to feel connected to other people.

For myself personally, I found it really hard to explain, for instance, what my husband was going through and what I was going through and supporting him. You know, he had a very rare cancer, his bone marrow transplant, the complications he had from that were complex and difficult to explain.

So in social situations, or even talking to close friends, you know, not my closest inner circle, but you know, often with friends I felt a little bit like, okay, this is going to bring down the mood and it’s complicated and I’ll be kind of taking over the conversation. So I would sometimes just like leave it aside. I often also, because I was so stressed and exhausted, you know, if I was in a social situation, which I rarely had time to be, I didn’t feel a sense of connection with friends who were having more, you know, mundane or everyday concerns. You know, the stuff that we all have and it’s normal and you know, just chit chatting about, life at the elementary school or what’s going on at the PTA or all of that stuff.

I was just like, I do not care. And that was kind of on me, you know, I didn’t feel that connection. I had a hard time talking with folks about like regular, everyday concerns.

And then I would also, for myself, I would point to the fact that since I was a spousal caregiver, I was isolated, like literally my husband was in an isolation room for a lot of the time. You know, I had to gown up and mask up to see him. He was very, very ill. We could not really like carry on a conversation for a lot of the time. And so, we became isolated from each other. And he had been previously a primary support system for me. You know, it’s my spouse. So I felt isolated even from my own family and from the person I was caring for, just because our lives were so different.

And the figures on how often caregivers do feel really isolated or, and then suffer like anxiety and depression and things in a related way are staggering.

Kay: Kate, what I would really like to ask you, mental health is incredibly important, for everyone, right? But especially for caregivers and, forgive me if you talked about this in the book and I didn’t pick up on it, but at any point in time did anyone reach out to you and say, “Hey, we’re worried about your mental health. We think you need some mental health support and, and here’s what we’re going to do for you.” Did you get any encouragement like that to take care of you?

Kate: I would not say so. I mean, I certainly got some questions that were along the lines of, “Are you taking good enough care of yourself that you can continue to take care of your husband?”

And I actually opened the book by talking about a moment like that, that I found very frustrating, where it felt very much like, I can see that this person is in distress. This was in an appointment with my husband’s oncologist. He could see that I was in distress. I was actually crying through the entire appointment.

And he asked, “Are you doing okay? Are you taking care of yourself? Because if you don’t take care of yourself, you can’t take care of him.” And I felt like the question was great up until that second part, because it’s like, I deserved care and to be taken care of, not just by myself, maybe because I’m a person, not just because I’m a caregiver whose state affects the outcome for his patient.

Proactively, like I was in therapy. I did go on antidepressants for a time while I was in active caregiving and that was working with my doctor. It’s very typical, as I’m sure you and many of your listeners know for caregivers to delay or put off medical care. I think it’s some like long delayed physical care.

With my doctor, she administered the depression and anxiety screening, and I scored really, really high. This was when my husband was in the hospital for four and a half months and was really at death’s door for a lot of that time. So, she did work with me on mental health things, but it was a standard screening.

It wasn’t, it wasn’t like people on my husband’s medical team were really reaching out to me or finding out how I was doing. side, you know, there were some kind nurses who asked how I was, things like that. But it felt very ad hoc and it felt like I had to look out for myself, which I really did not have the bandwidth to do for the most part.

Kay: Yeah, I, I believe that you didn’t have the bandwidth to do that. I see that all the time. I’ve been there myself. One of the things that I’ve noticed, and I’m taking language here, gratefully, from the world of diversity, equity, inclusion, and belonging. Is the system is set up to center the person who is receiving the bulk of the care and everybody else is kind of on the periphery. And caregivers do, in essence, become invisible.

And I love the word that you use in the book, which is erasure. It’s as if you don’t exist.

Kate: Yeah. And you know, this is a tough conundrum I think because it is true that if you are caring for somebody, it is because they need it. And often people are in crisis.

My husband was in a, like had what was very nearly a lethal cancer diagnosis and so he, his needs were really urgent. And the medical system is set up to meet those needs and to kind of take whatever resources it can to marshal those in that kind of urgent crisis.

And at the same time, I think it’s very much set up as this kind of idea that the caregiver is out of sight, out of mind, they’re an instrument in the care of the patient. And that has really increased in the last few generations.

Like caregivers are expected to do high level medical tasks at home with really minimal training. When my husband was coming home from the hospital after four and a half months, and mind you, he was blind. He was partially incontinent. He could not eat more than half his calories, so he was on IV nutrition at night, which I had to set up. He could not walk unattended. He was very, very, very ill. And he was being discharged from the hospital to our home where I also have two young kids and where there’s no way or in or out of the house without stairs.

And I was never trained in like, how to help a man up and down the stairs, for instance. And his doctor looked at me and said, you know, “When he comes home, he needs 24 hour care. You can’t leave him alone, even for a moment.” And that’s impossible. It’s impossible for a person to do that. And I murmured back and said, I, I can’t do that. What am I supposed to do? And he said, you know, usually family steps in and it works out fine.

And it’s, it became really clear to me at that moment, like, that was not the doctor’s problem. He was prescribing 24-hour care, something that is literally impossible for any human to provide, and that is also, by the way, not paid for by insurance. It was medically ordered that my husband have eyes on him 24 hours a day and there was zero provision or zero coverage for any help or, you know, round the clock eyes, the way he got in his isolation room in the hospital. You know, he had people with him at all times then.

But when I was setting up his hospital at home, there were no highly trained nurses available for me. So we hired, I hired people out of pocket to have some attendance for him, but this really. The health system cuts costs with this like hospital-to-home movement and doesn’t even see the burden that that is placing on families.

You know, we were really fortunate. I had savings I could dip into and pay for that level of care. And get him good care. But just the kind of idea that like it’s blindly assumed that every patient will have a caregiver at home who has the wherewithal to care for them. That’s not true. People have relatives who have to go to work. People are isolated. People don’t, you know, sick people who are discharged from the hospital, like the idea that there’s a caregiver ready and willing to do that is, is this, almost this blindness by the healthcare system because it’s beneficial to them to send people home.

Kay: So that’s exactly right. We, we talked a minute ago about what Kate Manne so beautifully termed human giver syndrome. This is what I have started to call the “human giver system.” Which is the system, the economy that is built on looking to see if caregivers are actually able to provide what’s being required of them. Because let’s face it, it makes things so much cheaper for everybody else, from the doctors, to the hospitals, to the healthcare systems, and honestly to the government as well.

There are, you know, paid programs like Medicaid that people are just denied right and left because they don’t, quote, unquote, don’t qualify, when people are in desperate straits. So I, I’ve gone farther now and started to look at this as a, as a systemic problem. I think it’s designed to be this way.

Kate: I agree. And you know, one of the figures I cite in my book, and this is an old figure, I think it’s nine years old now, is, uh, from an AARP study that looked at the value of caregiver labor and placed it at $470 billion a year. When I talked to somebody involved with that, they actually, it’s probably a bit of an underestimate because it estimates at a low hourly rate. It estimates a lower number of hours than caregivers are doing now, nearly 10 years later.

I do not have the chops to do this, but I would love to see somebody compare that value of unpaid family caregiver labor to the cost savings from hospital to hospital, from early discharges, from the hospital-to-home movement, to having, how much are, how much is the healthcare system saving that is coming directly out of the labor and often out of the pockets of family caregivers?

Kay: Yes, I would like to see that as well. I hope somebody takes up that charge because that study that you cited also did not calculate the cost of what we would call skilled nursing care that like the kinds of things you were doing for your husband. It’s outrageous, isn’t it?

Kate: It is. And I was really shocked, by the expectation that I do these skilled nursing tasks when it first came to me. And I, I’ve since realized that that’s par for the course and people at home. And I’m sure many of your listeners are doing high level wound care and line cleanings and, you know, I was doing, you know, IV push, antibiotics and all kinds of stuff that like, you know, get a half hour training before your loved one leads the hospital and then you’re good to go.

Kay: And that is where I’m going to pause the conversation for this week. To give you just a little bit of context, I did not initially plan for this to be a two-part episode, but as I was listening to it, after Kate and I recorded, I felt like you might need some space in the middle to kind of digest how big Kate’s story really is and how important her perspective is. I know that was true for me, so I decided to build in a break right here. Tune in next week to hear part two.

In the meantime, you can find links to Kate’s work and to her book, “Already  Toast: Caregiving and Burnout in America,” in the show notes and on my own sources page, which is facilitator on fire.net/sources.

You can find out more about all of this work at Facilitator On Fire dot net. That’s Facilitator On Fire dot net. If you’d like to be less lonely and get some personalized help too, go check out the membership, which is called, “From One Caregiver to Another Cafe,” and you’ll find that at Facilitator On Fire dot net slash membership. It’s the place for caregivers to find non-judgmental community – I know that’s really important – and to safely explore what it could be like to put your own life back into your life. I can’t wait to be with you again in the next episode, From One Caregiver to Another.