Kate Washington – On Caregiving and Burnout, part two

Transcript: Kate Washington – on Caregiving & Burnout, part two (Episode 92) 

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: Hi there. Kay Coughlin here. This is part two of my interview with Kate Washington, author of Already Toast, caregiving, and Burnout in. Since I’m a caregiver too, talking with Kate really helped me feel seen and understood, and I hope you get as much out of hearing Kate’s insights as I did.

Now, if you haven’t already listened to part one, which was episode 91, I highly recommend you go back and do that. And in order to help you, if it’s been a bit since you listened to part one, I am starting this episode here with the last couple of minutes of that:

Kate: …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: It’s terrifying and it’s also too much of a burden for any individual to bear. You said a moment ago that’s par for the course. What did it mean to you to watch people around you shrug their shoulders and basically say, well, that’s just the way this works.

Kate: Yeah, that. That was tough. I mean, that was tough confronting at medical appointments, like as we got deeper and deeper into the system and seeing how entrenched the idea that just like the caregiver was there to pick up all the slack and the slack is built into the system, was really hard to come to terms with.

And I was fortunate in one way that I was a freelance writer and I could drop all of my work obligations. I mean, that sounds weird to say that that’s fortunate, but it means that I didn’t have to like lose a job, which is very common for caregivers, that they to step out of the workforce or reduce their hours. And that then has further economic consequences if they’re the carrier of the health insurance, et cetera.

We were able to retain health insurance because my husband was a professor at a public university and though he has a disability retirement, he still has that insurance today. So we had his benefits to rely on, but just seeing the degree to which the system’s response to my often very evident distress was a shrug and a kind of like that’s how, how things work.

When, when he was being discharged in the state that I described earlier, I asked for a discharge conference and some of the things that people, that physicians came back with about his, like his liquid nutrition. One of the physicians said, “Oh, you know, a lot of our patients just plug it in to themselves, to their port.” Um, and it’s not a just plug it in kind of procedure. My husband was blind and had neuropathy at the time, so I don’t think that would’ve really worked out.

But the idea that this is what you do and you’re supposed to carry on. And in my case, Brad, my husband, his needs were high for a couple of years.

But the average duration of caregiving in the U.S. is, is four and a half years. People are, the average number of hours a week is like 24 hours a week, and that’s higher for cancer caregivers, higher for some high-needs caregivers. So this, it’s a really intense thing and it’s very under the radar, and I was so shocked just to realize how many people are struggling with this as I went through it.

And I should clarify, and I do this in the book, I’m highly privileged in terms of being a caregiver. I have a lot of advantages. I did have a strong support network.

You know, we had people bringing us meals. My community didn’t shrug its shoulders. My community rose to the occasion, and people, you know, one family took our daughter, who was six years old, every Sunday, no questions asked. I’m tearing up, you can probably hear it in my voice just thinking about that kindness.

So there were, there were places where it was seen and it was, we were supported and I was supported because I think of the extent of my husband’s crisis. But there are so many caregivers out there, forgotten, isolated, struggling on for years.

I think this is particularly common with people who are facing degenerative diseases, dementia, things like that with parents, where it’s just kind of an ongoing slog that is really overlooked by society at large, even though a fifth of Americans are family caregivers. A fifth. 53 million. Or a sixth, somewhere in there. The numbers are always growing.

Kay: I know that you mentioned that you did not have to step out of the workforce yourself, and that you didn’t lose benefits, which is, which is actually wonderful. But I want to push back on that just a little bit, because you actually did step out of the workforce.

I mean, we’re talking about you, Kate, you know? You did stop writing for a time. Now, on the other end, we did get this wonderful book, but I’ve read a lot of your writing. You’re a gifted writer. Even setting that aside, you know what, what you, I’ll say could have been contributing to society and culture through your writing.

You also for a time, were not contributing to your own retirement, you know, you were not contributing to the security of your own future. And that is something that I see quite a lot. We really underestimate the economic cost of taking those breaks in our career. Now we get back to gender politics, right?

Women are kind of, we’re kind of expected to do that and for us, a lot of times we just pick that up in the later years, except that’s not really how economics works. And by losing a couple of years in the middle of your best and most productive time of life can be financially very detrimental. So yes, I totally understand that your situation, I mean, compared to a lot of people, I’m in a privileged situation myself. I completely understand.

And yet we have to not discount that there are so many of us who make those choices because there’s no other choice. Yes, because there’s no economic support to keep us being productive in the workforce. And I don’t know about you, but I am wired to work. I love working. I love doing what I do for a living.

I have always loved going into the office and now running my own business. Losing that, when I have to take a pause from that, for me, it’s like having a limb cut off.

Kate: Yeah, I, I found it very hard to be separated from my paying work and the things that I had always done. I did maintain a little bit of a writing practice while during the worst of Brad’s illness, and some of those writings ended up forming kind of bits and pieces that have, are woven into the book.

You know, I, I would write almost like diary entries. I also maintained a blog of hi illness and his progress to communicate with family and friends. That ended up being a really useful resource to look back at. But I definitely missed doing paying work.

And there was, there’s an incident I describe in the book. I often found it really frustrating because one of the things that happened with my husband is he was unable to eat for a few months. He lost the ability to eat because of the severity of complications from his bone marrow transplant.

And most of my career has actually been as a food writer. And one of the things that I did when he was in the hospital when he was trying to learn to eat again, which was critical for him to recover and to live, he found the hospital food so unappetizing. So I started making broths and would make like really bland foods, but that I thought would be appetizing for him.

It was really tough to kind of like bring him along to eat again. And I actually, I have a whole essay that I wrote about this, that is about looking at old Victorian cookbooks that had food for in invalids and so on. So I looked back at that and later on I found I was using my professional background as a food writer to think about like, how am I going to get this man to eat again? And it was kind of part, it became part of my caregiving life for him.

And later it was questioned sometimes by like dieticians or by one physical therapist in particular who I had this run in with where she was like, “You should be making him bone broth.” And I was like, I just wrote something about how to make broth and where to get the best, you know, things to make stock.

And I felt very erased, like as a professional person. I mean, she didn’t know that I was a food writer, but it was like, it felt so awful to me. Like this, you know, 20 plus year career, was just invisible. I was just the wife who should have been doing more for my husband. And it’s like, I’ve been thinking very carefully about his nutrition, about how to entice him to eat again.

And I’m using actually professional skills to do that, and they just were unseen.

Kay: So I, I feel it so deeply that you were being judged for a set of skills that this random person found you to be deficient in. And it was not her area of expertise. It was not her place to butt in and, and yet somehow she managed to stick a knife in and kind of dig around, didn’t she?

Kate: She really did. I will also add that she told me to start making long-simmered broth for my husband on a day that was 106 when there were like five different clinicians in my house trying to help him. 106 degrees Fahrenheit! I was like, sure, I’ll just start simmering some broth right now. That sounds great. Like in between going and picking up my kids from school like, do I have time to stop for an iced coffee before I do that because I’m exhausted.

You know, and there were all these people in the house and it was just overwhelming and chaotic and it was like, I have so much to do and the air conditioning is not keeping up. But yes, I’m absolutely going to start making bone broths. Sure.

Kay: So I would like to try to pull out something hopeful here. Look, I do not believe in toxic positivity. I am not telling people to go tra-la-la, run around in a field of daisies and ignore what you’re feeling.

But I would really like to know, what was something about that time you were caregiving or maybe since then that really made you feel seen? Something that made it so that you knew that you did indeed exist and you had not been erased?

Kate: That’s a great question. I think that, you know, the support of certain friends and being able to be real with like the Inner Circle friends. I have like a little kind of online group chat and we have a Slack group and those friends who I could always be honest with about like how difficult my feelings were. They saw exactly what I was going through. Those connections were incredibly valuable.

One, that might sound a little bit odd, but I connected with a lot of people in the caregiver community on Twitter, which Twitter right now is having its own challenges, maybe needs a caregiver of its own. But one of my ways of coping with things is kind of dark humor, and I didn’t feel like I could express any of that on Facebook, where so many of my husband’s family members were hoping for updates and so on.

So I started, I would tweet kind of snarky things about stuff at the hospital or the hospital coffee or their weird art or whatever. And I ended up kind of building a little community during that time when things were really, were really tough and could find kind of an audience and return of whatever vibe I was giving off. And there were lots of other people in kind of similar, similar situations.

I think since the really intense parts of the caregiving experience, writing this book and hearing back from caregivers. That it helped them feel more seen and like that they felt invisible and that they felt seen through my words and my expression of my experience. Like expressing the experience for myself, researching it more, and then getting feedback about that has been incredibly valuable and incredibly meaningful.

I’ve been fortunate to speak to a bunch of audiences and I hear from and talk to people who have been through similar things, and that has really, I think, helped me feel more seen as well. So those are, those are some of the ways.

Kay: Thank you for that. I really appreciate that.

Because you’re, it’s not like you work with family caregivers every day, it’s almost not fair that to ask you this question. But you did research a whole book, so you know, based on the research that you did, or maybe your own experience, what are some of those top obstacles for caregivers to getting help?

Kate: I think that a major one is how siloed and fractured the system is. We have a patchwork of resources. In some places there are local agencies. In some places there are county agencies. Some states have good resources, some don’t. You know, some hospitals have good social workers. Sometimes you get assigned somebody who has a caseload of a thousand other people and they can’t really help you. Some nurses go out of their way to connect you with resources.

So for every caregiver it’s reinventing the wheel to try to figure out, like navigate the hospital bureaucracy, the cancer center bureaucracy, the group of resources that are available.

Just as one small example, as I was writing my book, I learned about a resource here that’s like a caregiver resource center, and I was like, why have I never heard of this when I was like going through the intensity of caregiving? Well, it turned out that that resource center, its funding comes from brain health organizations. So they only can provide resources to caregivers who are, whose care recipient has dementia or another, or like a brain injury or another similar condition, which it’s great. I think it’s wonderful that that resource exists, but then you kind of see that and you feel some hope, and then it’s not, it’s not available to people.

There’s just this patchwork and it’s so much work to figure out where to find resources. You know, I have a statistic that I found that only like 14% of caregivers use respite services, and it’s because they’re so hard to find and because caregivers are so overwhelmed and so overtaxed that there’s no advocate, whose job is the caregiver and figuring out how to get services to the caregiver. And there’s no central agencies in most places. There’s no place to really go and look.

So that, combined with the fact that so many caregivers come into the world of caregiving unawares, unprepared. You know, you don’t have the legal structures set up like powers of attorney. You don’t have the, like a lot of people don’t have the financial thing set up and like, because they don’t expect it. Because we are not looking at caregiving as like a life stage that most of us are going to face, which I think is a cultural shift that we need.

So, caregivers may ask for help and just not really get any response back, and that is very discouraging and really tough.

I referenced earlier we do have this kind of individualist culture that teaches us to be self-reliant, that teaches us to keep family problems behind closed doors. And for a lot of people it’s hard to mobilize community. I, I mentioned we, we had a meal train, like we had a meal train at various times and we would get, we got many, many, many meals and it was incredibly helpful.

But I started to feel a little bit like I’m taking too much because a few years before, we’d had a meal train when I had my second baby. And then six months after that my mom passed away unexpectedly and we had a meal train for that. And then like a few years later, my husband got sick and we had another meal train for that.

And I was like, oh God, aren’t people tired of bringing me dinner? Like, wow, I can’t keep asking for this, you know? People were happy to bring us dinner. They wanted to help. But I felt sort of sheepish about accepting it, you know?

And now I do try to pay it forward and bring dinner to the people who I know need it when I can. But there is that feeling like it can be uncomfortable to ask for help.

So, I think there’s a lot of causes, but I, I really firmly want to point to the main ones as structural failings of our system of patient caregiver support.  

Kay: A hundred percent agreed. Agreed. It’s a systemic problem. I would really like to give you the opportunity here as we close up to offer, I don’t want to say a piece of advice because, that sounds like you’re trying to tell people what to do.

If you could grab a caregiver by the shoulders and look them right in the eyes, what would you say to someone who’s really struggling with the overload and the isolation like you were?

Kate: I think I would say, you’re not alone.

A lot of people are feeling this way and facing this, and the feelings that you’re feeling are okay. Like if you are feeling mixed feelings, resentment, guilt, shame about those mixed feelings, anger. Those are all normal. They’re part of this journey and I want people to feel okay about going through those because I think for so many of us, it’s not just the negative feelings, it’s then the like extra layer of feelings around them.

And I know that a huge component of your practice and your work, Kay, is talking about setting boundaries. And so I would add to that, it’s okay to set boundaries, to limit things, to be an advocate for yourself in what you can reasonably manage and set boundaries even around an ailing loved one. You know, you do need to have boundaries for yourself to preserve that essential sense of yourself and who you are, even through such a challenging journey.

Kay: Okay. That was beautifully said. I could not have said that better myself. Thank you so much for leaving us with that.

Where can people find you so that they can find your books? All of your beautiful writing. Where would you like me to send people to find you online?

Kate: My website is kawashington.com. I do have a list of, you know, care, some caregiver resources on there as well. I’m always in a contact form. I’m always happy to hear from people, especially with additional resources that I can add to the list. My book is available in hardback, paperback and audio and electronic versions wherever books are sold. And my social media handles are generally at WashingtonKate.

Kay: I will put a link to your website in the show notes.

I will also put a link on my own “sources” page, which is just Facilitator On Fire dot net slash sources, which is where I put all of the useful links, including people who have other sources pages, and my wonderful podcast guests.

Thank you so much. I really just want to thank you again for your contribution to this work, the vulnerability and the intelligence that you have brought to the world through this book and through your ongoing work with anybody who calls looking for more information, really wanting to talk about the book, wanting to talk about the topic. You’re making a huge contribution. And I’m personally very, very grateful to you, and I’m just so grateful to you for being on the podcast today. Thank you so much, Kate.

Kate: Thank you so much for having me. It’s really been a pleasure.

Kay: 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.