Episode #113: Kate Washington
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
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Almost all of us will assume a caregiving role for a close loved one at some point in our lives. When is the correct time to start mentally preparing? Do you think you'd feel comfortable administering treatments that deeply affect your loved one's quality of life?How do these people balance caregiving and their careers?
Kate Washington has become outspoken about her experience as a caregiver to her former husband and the challenges facing family caregivers. In 2021 she published her book, Already Toast: Caregiving and Burnout in America. She provides insight into the world of caregiving, the sheer number of caregivers in the United States, how to change the system to benefit these overworked, often struggling individuals, and offers advice to those who have already experienced burnout. Kate shares how to prepare in advance for receiving support from those around you while you’re busy caregiving for your loved one.
“Caregivers are an underserved and under-appreciated population. Roughly 1 in 6 persons in the United States are caregivers.”
Here are some of the key points we cover in this week’s episode:
Seeing the extreme stress placed on her mother when her grandpa fell ill with Parkinson’s when Kate was a child
Tasks such as scheduling, coordinating help, and research contribute heavily to the mental burnout one feels as a caregiver
The medical training Kate received to become a caregiver for her seriously ill former husband lasted 20 minutes
Several different systemic changes that Kate would like to see in the United States to help serve and support caregivers
The reality of the fact that many of us will have to assume this role at some point in our lives can be overwhelming, but being prepared is key
Various readily available resources for those who are currently in the caregiving role. Links to those resources are below
“If you can’t care for yourself, you can’t care for your loved one that needs it.”
About Kate Washington:
Kate Washington is the author of Already Toast: Caregiving and Burnout in America (Beacon Press, March 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.
Purchase Already Toast: Caregiving and Burnout in America.
Website: www.kawashington.com/
Instagram: @washingtonkate
Resources mentioned in this episode:
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Harper Spero (00:04):
Made Visible helps people with invisible illnesses feel seen and heard. It provides a platform for people who seem fine but aren't to share their experiences. It also helps to create a new awareness of how we can be sensitive and supportive to those with invisible illnesses.
(00:25):
Please note this podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a license or registered healthcare professional about your individual condition and circumstance. Hey guys, welcome to another episode of Made Visible. I'm your host, Harper Spiro, and I'm so glad you tuned in today's guest, Kate Washington is someone who has done a deep dive into caregiving personally with her former husband and through the book she published in 2021. That's all about her experience as well as the systemic challenges facing family caregivers. This is a must listen to episode because whether you're currently a caregiver or patient, you're likely going to have to care for someone at some point in your life and Kate has incredible tips and resources to share. So welcome Kate. Welcome Kate. So happy to have you here today.
Kate Washington (01:22):
Hi, thanks so much for having me.
Harper Spero (01:25):
Absolutely. So let's start. Tell us who you are, where you're from, and what you do.
Kate Washington (01:31):
I am a writer and editor. I am originally from a small town called Chico in Northern California and I've lived in Sacramento, California for 19 years now. And I write a wide variety of things, including recently. It came out two years ago. My book already Toast, caregiving and Burnout in America.
Harper Spero (01:52):
Amazing. So we're gonna talk a lot about your experience around caregiving today, but before we get into that, I'm really curious to hear how you identify yourself and what shapes your identity.
Kate Washington (02:04):
In terms of caregiving, I identify as a former caregiver. I am no longer caregiving to my husband from whom I am separated. I am a mom of two teenage girls. I identify as a woman as Gen X. I'm 50 years old, as I said, as a writer and editor and lots of other things that I have interest in
Harper Spero (02:26):
<Laugh>. I love it. So you've been a caregiver for your former husband as well as your late mom. What was your first experience in caregiving?
Kate Washington (02:35):
I would actually say that it was helping my mom before her death in 2010. A couple years before that my grandfather had Parkinson's and she was really struggling to find help for him. He lived about an hour away from where she and I both lived and seeing the stress that it caused in her and the difficulty of getting elder, even though he and she had a lot of resources to attend, that we had a lot of difficulty placing him in a care home. There were various challenges with moving him with his resistance, with the difficulty of finding in-home care and I saw the really extreme stress that it placed on my mother. And after that, in a way she was bipolar. She was diagnosed early when in my childhood and that was kind of invisible throughout my childhood and her life, but also controlled with medications. But looking back, I actually think that the strain of her caregiving experience and then subsequently of my grandfather's death led to a relapse of her symptoms and a lot of challenges with her mental health. So that may be kind of the roots of my interest in caregiving.
Harper Spero (03:50):
Yeah, that makes sense. And wow, that sounds really intense to deal with. You mentioned the word visible. So your former husband's illness evolved from a more visible to invisible illness, and as that happened your challenges as a caregiver evolved too. Can you speak a little bit more about that experience and how that shift went?
Kate Washington (04:10):
Certainly. So he was diagnosed with an aggressive form of lymphoma in 2015, was hospitalized for a long time. Had chemotherapy that was inpatient for also a long time, relapsed very quickly had a stem cell transplant. That was very devastating. He was in the hospital for four and a half months. He actually lost his vision during that time, which he since recovered with surgeries. And the reason for his hos long hospitalization was a complication of stem cell transplant called graft versus host diseased, which can be either acute, which is quite visible because the people who have it are very, very ill. It can also result in skin rashes. It's essentially the transplanted new immune system reacting against the host. So kind of an inverse of rejection of a solid organ in like an organ transplant. And so he had a very acute form of it, mainly of the gut.
(05:11):
But also the eyes, which is how he lost his vision. It can affect the liver, the lungs, the skin. When he was discharged from the hospital, he was blind, unable to walk independently and a doctor told me that he had to be attended 24 hours a day that he couldn't be left alone even for a moment. So his illness was extremely severe at that time and nobody looking at him would've thought, I'm not sure if that man is ill. And the strain of being told he needs 24 hour care and you can't take any sort of break when it's like, well I have to sleep, was really galvanizing for me. Over time his illness settled into the more chronic pattern of G V H D, which he still has to this day. It was a slow and gradual process I think from having like a very clear and visible illness to going to an invisible illness for him and certainly for people who knew him before he was ill.
(06:09):
There are changes, you know, he, his body is different. He, he looks different in some ways, but also, you know, it's been eight years now since his diagnosis. So there's also just normal aging and changes around that. He now has chronic graft versus host disease. It continues to affect the gut. His eyes are okay, he has other symptoms that can flare up and he continues to receive treatment for the graft versus host disease and his medicated with it and he's actually kinda become active in the graft versus host disease community. There's not a huge amount of information about it, but as more and more people get stem cell transplants to treat cancer, there are more people who are suffering from it.
Harper Spero (06:52):
Wow. It's really so intense sounding and I think about so many people who are caregivers and I'm sure you experienced this in doing research for your own book, how many people don't identify with the term caregiver. And I've seen it in my own work of people that just sort of say, oh, this is what I have to do. It's my loved one, of course I'm gonna do this. When did that word caregiver come into your orbit of realizing, oh, this is the role that I'm playing?
Kate Washington (07:20):
I think probably following my husband's relapse and knowing that he was going to have to have this stem cell transplant, I'm not sure that I thought about it or would've used it as an identity for quite a while, but actually in the early stages of his lymphoma it was fairly invisible. Nobody would've looked and thought he was sick. And I certainly didn't think of myself as a caregiver even though I was doing things like calling the lymphoma and Leukemia Society to find out more information, doing a lot of paperwork, getting our affairs in order, all of those kind of ancillary tasks. I wasn't providing hands-on care to him, but I was doing a lot of the support tasks as well as emotional support that are a real hallmark of caregiving but that are often overlooked as part of it because as you said, it's just the thing you have to do.
(08:09):
I will say when he came home from the hospital after his first hospitalization prior to the stem cell transplant, I was sent home tasked with giving him IV medications through his PICC line. And that was a real shift for me also mentally of like, oh, like I'm gonna be doing a lot of stuff here, but I'm not sure that I really knew the term caregiver at that time, you know, or if I did, I was thinking of it more in terms of like long-term elder care, say for somebody with Alzheimer's or something like that. Not my 42 year year old self attending to my 44 year old husband. You know, I just had not thought about providing that kind of care. I had always thought, because we lived in the same city as my mother and she had quite a few health problems in addition to her bipolar disorder, I had always thought that I would care for her in her older age and then she died by suicide in 2010. And so I kind of thought, well, I'm not really faced with the necessity of caring for somebody besides my children and I was extremely wrong.
Harper Spero (09:14):
Yeah, I mean what's so interesting is like you just get thrown into this situation with no training, there's no life preparation for this. All of a sudden you're an at-home nurse and no one really prepares you for that. And I don't know if what your experience was, but years ago I had to have IV medication at home and I had a nurse come over one time show me how to do it and that was it. I was on my way, I had to figure it out. And if there were any blips along the way, I'd go on Google or I'd email my doctor, but no one was sitting there going, oh, something's not right with this needle. Or you need to turn it this way or shake it that way. And you're not really prepared for that. I mean, as you said, you signed up to be his wife. Sure you can say for better or for worse, but ultimately you don't think that this is what you're gonna have to be faced with.
Kate Washington (10:05):
Yeah, and I, I got married at 26 and in sickness and in health was a very abstract concept at that time. And I think I really wanna underline what you're saying about the intensity of medical tasks at home. That's a, been a real shift in caregiving over the past generation or so. The studies really show that, that the intensity and amount of medical tasks that 30 years ago would've been done only by a nurse are now being done by caregivers or even by the person themselves, as you said, at home. And that really adds to stress. I remember I also got about a 20 minute training by a nurse in the hospital before my husband was discharged. And I remember the first time I was doing it, just my hands shaking. Like I was very, very nervous about doing that. And then, you know, it became routine and I got okay at it and it was all right.
(11:00):
But I don't think it's all right for the medical system to task people with things like wound care and IV and line care. Like these are things that are, can be life-threatening if they go awry and many people are not prepared. You know, the trainings, as you said are short that people have lives. I was fortunate to be a freelance writer so I could work that kind of care into my schedule or just, I ended up not working for almost two years. But you know, people have to go to work, they can't stay home and care for a loved one all day or come home at two o'clock when it's time for the IV meds necessarily. And that leads into the financial pressures on caregivers. You know, people have to maintain their jobs so that their loved one continues to have health insurance in a, you know, a chronic illness situation.
Harper Spero (11:52):
Yeah. I also think that there's the aspect of you are trying to cope with the situation that you're being faced with the emotional side of things and here you are where you have to put on this nursing hat and go, I can do this too. I mean there's just, it's just nuts to me. So with that said, I find, and I've, this keeps coming up on the podcast a lot is that a lot of people have a hard time asking for help, whether it's patients and I'm sure for caregivers as well. How did you approach asking for help when you needed it in order to support him but also to support yourself and take care of yourself?
Kate Washington (12:29):
Interestingly, I had a much easier time asking for help to directly to support him. And it was harder to ask for it for myself. Certainly I am an oldest daughter and not somebody who asks for help a lot. In fact, I, I recently had surgery and I had to sort of make a practice asking for help and asked people to support me with meals and coming over and staying with me. And so that was an interesting flashback because I didn't have a caregiver at home in the house and I had to, I asked my sister-in-law who came for several days but it was hard for me to ask and I felt like I was being a burden a little bit. But when Brad, my former husband was really ill, I did ask friends to set up a meal train and when he, in his first hospitalization, it was several days where interestingly he actually didn't want me to ask his mother to come to support us.
(13:29):
His parents live in, lived in Canada. My mother-in-law has since passed away, but he didn't want me to ask his mother because he didn't want to worry her and, and inconvenience her by coming. And once he'd been in the hospital maybe a week, I finally did ask and she actually flew all day on Mother's Day and came to help us and stayed with us quite a long time. My, my in-laws were an enormous source of support and they did a lot of the in-hospital, you know, a lot of hospital visits and attendance because I also had, my children were nine and five when Brad was diagnosed. So that was, there were a lot of childcare, <laugh> needs as well. I did have great community support and what I, one of the things I really appreciated was the people who offered without me having to ask, you know, one friend the dad of my younger daughter's best friend, just, they just offered, they said, bring Lucy over every Sunday.
(14:31):
And she went to their house every day on Sunday all day for probably a year, no questions asked. And that was like absolutely invaluable support, but that's a thing that I would not feel comfortable asking for. That said, I look back and I wish I had asked for more help and given people ways to help me. And I really urge caregivers to ask for the help before you reach the point of stress and burnout. Cuz I really got to a place where I was in a difficult spot. Like I was very burned out, I was exhausted. I, you know, became short-tempered, kind of lost my empathy and lost kind of the reason that I was doing it because the, the length and intensity of the illness had been so great and that did fade after the, the really challenging parts of the illness. But it's something that continues to affect me and that I continue to think about today.
Harper Spero (15:28):
Yeah, I mean it's amazing to have people like that who do show up and just say, all right, Sundays we've got are all good. You don't need to think about this one specific day every week. But what are the tools and tips that you would provide to caregivers today around asking for help? What are those best solutions that you may not have taken but you would advise people? Now?
Kate Washington (15:50):
One thing that I did not know about, and I don't think it was available in my time, is that there are now apps that kind of automate it where you can put out your tasks that you need done. One of them is iCare and your circle of people can kind of jump in and choose the tasks so that they know they're doing something that is necessary for you. You know, if you need your lawn mode or you need, you know, sometimes you might not need a meal, but you might need somebody to rent a target and pick up laundry detergent or something like that. And you can ask for those kinds of help without having to make a direct ask to one person. And I think that kind of takes a level back and gives people the opportunity to step in when and where they can.
(16:36):
I also think that it can be valuable to designate somebody, you know, if you're close to somebody, a close relative a, a sibling, a really close friend funnel requests through them and like they can kind of run interference on things. If you can get kind of the help equivalent of a phone tree where things come down and people are asking so that you're not, you're not asking. And also coordinating all the help because sometimes, you know, this is the value of like a signup thing, like a meal train is that the person who is in need of the help doesn't have to do the coordination of the help, which is it another job in and of itself. So those are maybe a couple of tips and just continue to try to ask in the ways that make sense and feel comfortable for you, but early on, like ask for help before you think it's a crisis.
Harper Spero (17:32):
Those are really, really helpful tips and they make me think of so many things in my own life of, you know, having that one website that's so smart. I didn't know of that. That's so, so helpful to know about. But I think about, for me, I was sick a few months ago and I get a weekly farm box that's delivered to my door and basically everything needs to be cut and eaten or prepared and my friend offered to come get it but asked me what I wanted her to make and I was like, that's too much for me to think about. I can't get outta bed right now. Thinking about what you should prepare for me is a lot harder than me scrolling and trying to do food delivery and getting a prepared meal. But another friend came and took it and the next day brought over soup and I wasn't there to shame the original friend and I had a conversation with her after the fact. I said, I can't think strategically in that moment. It's a really tough time. I don't feel well delegating to you in that way was really, really hard. I don't want you to be a mind reader. I don't expect that. I think I did then. But you know, looking back I realized there's just other tools and I think those are really, really good ones.
Kate Washington (18:42):
That point you make about the difficulty of delegating when you're in a crisis space is really very true. And something to underline around caregiving, you know, a lot of caregivers, the reason they get to a point of stress and perhaps burnout is that it feels impossible to delegate because you are the one who knows how to do the tasks. You're the one who knows your loved one's illness and knows what they need inside and out. You know, the studies show that only 14% of caregivers in the US are using any form of respite care and I'm sure people, you know, have friends who spell them or something like that. But delegation is difficult because it is a whole set of cognitive tasks. You know, you have to make the list, you have to tell people what to do. You may, when you're taking your break have to be available for texting and just decision making around delegation what to do and things as simple as like, I don't, I can't tell you what to make from the vegetables. I am too. I am beyond that point and I have been at that point as a caregiver, you know, you get decision fatigue around things and it's difficult.
Harper Spero (19:55):
So as you said, you are now separated from your husband, so I'm really interested to hear how you're navigating the new normal when he lives independently and manages his own care. But you still share custody of your children?
Kate Washington (20:10):
Yeah, we do. We separated by mutual consent a little over a year ago, so we were still living in the same household through the pandemic and that, you know, I did kind of resume more of a caregiving role at that time, which I'm happy to talk about later if you'd like to. But he is functionally independent, you know, he has recovered his vision, he can ride a bike and likes to do that to sometimes to go to his medical appointments, things like that. And we do share custody of the kids right now it's 70% me, 30% him. I think we're gonna shift toward more of an equal balance fairly soon. It's been quite amicable and I have said to him that if there's a flare up or something is happening for him in medically, you know, I am available. One of the reasons that we're separated and don't have immediate plans to move toward divorce, even though we also don't plan to reconcile, is that he carries the health insurance, which I am on.
(21:13):
And also I am aware that if something happens with him medically, there is automatically space in the hospital room for the wife and he is the kid's father and he has been through an enormous amount in his medical ordeal and I know that situation inside and out. And so if he does have a relapse or a, you know, an acute flare of a difficult flare of graft versus host disease, I could be there for him as needed. You know, early on in the separation we did kind of have to navigate like what is the role and how much are you gonna tell me about your medical, about your medical situation? You know, I, I still have, and I, as far as I know, I'm still his emergency contact and you know, I still have HIPAA access to his records, which I of course do not use because he deserves his privacy.
(22:11):
But that was a, a kind of interesting devolution I guess of, of my role though in truth, the caregiver role had been fading for a long time and even in 2021 when the book came out, I struggled a little bit because it was very much about caregiving. We were still together at the time, but people would say like, and Kate is a caregiver in introductions and I'd kinda be like, now I'm kind of more like a care partner. Like we talk about his care, but he's really able to manage it and I wasn't doing the hands-on care before our separation for some time either.
Harper Spero (22:47):
Yeah, I mean it sounds like there's a lot of like identity shifts around this term, especially, you know, you came up with with this book and to your point, you do interviews, you're talking about the book here you are a year and a half, two years later still talking about it, which I'm thrilled you are, but I'm sure there's a level of like, what is my identity around this and at what point do you go, okay, I need to put this chapter behind and move on with like other writing and other work that you're focused on. Do you have any thoughts around that?
Kate Washington (23:19):
Yeah, you know, for quite a while after the book came out I was doing a lot of speaking around it and I still am doing some speaking as well as things like this interview and discussions around caregiving. I really continue to believe that caregivers are a tremendously underserved and under-recognized population. You know, in the US it's 53 million people who are caregivers to an adult family member or you know, friend or associate and that's about like one in six and the numbers are growing and are likely to continue to grow as the baby boomers age. And there's really almost no practical support like structurally, institutionally, you know, some workplaces are starting to give paid leave, but there's no federal policy for paid leave. I'm speaking specifically to the US which is, you know, the context of course that my, my book covers. So I do continue to feel passionate about the issues around caregiving and you know, want to share that story and also share directly to caregivers because I've heard from a lot of people in the wake of the book coming out that it made them feel less alone.
(24:33):
It helped them acknowledge their emotions. You know, I think a lot of times caregivers struggle with frustration, anger, even resentment, and then then in turn feel guilty about having those feelings. And I experienced all of those things and I want to, you know, underscore the caregivers that those are normal and it's difficult to have your life taken over by, you know, the needs of another person no matter how much you love them and no matter how acute those needs are. So I do want to continue to talk about the book and talk about my experience and more than my experience, one of my goals with the book was to show not just that this affected me, but that it's a systemic issue and that caregivers who are trying to do it individually and alone, like the reason it's so hard is not because they're individually failing, it's because the system has failed caregivers and in turn then has failed the people we are caring for.
(25:39):
It's, you know, vulner, the vulnerable people who are ill, who are in crisis, who are challenged by ongoing or chronic illness. Like there is not enough support to care for people and that's bad for the patients and the caregivers alike. At the same time, you know, I have started working on some other projects. They're very much in very nascent form. I did take quite a time after the book came out because I was busy with promotion, busy with the speaking and I felt kind of creatively depleted for a while. Also, there were big shifts happening in my life, including the separation, but I am returning more to writing now and kind of enjoying exploring what a new maybe literal chapter could look like. Over the past year, my main writing project actually was, I had this goal before I turned 50, which was in October of last fall of going to 50 different swimming holes or bodies of water to swim in. So I blogged that and just kept like up each swim or dunk that I did and it was a lot of fun and it kind of reawakened the joy of writing for me. Even though, you know, it's this tiny blog that I'm sure n you know, hardly anybody read, I didn't tell very many people about it and it was kind of just for me. So a very different project.
Harper Spero (27:01):
Yeah, I love that you did that for yourself. It's so important to find those little things, which to your point like the goal was not to make it a mainstream article, it was, I need to do this for me. It's my own goal, it's my own project. You mentioned systemic, which is clearly a huge challenge within the caregiving world world. Can you speak about what your goals, what your hopes are for the systemic and structural changes within the caregiving space?
Kate Washington (27:30):
They're so big and so pie in the sky, probably the last chapter of my book talks a lot about the, you know, what I wish could be seen at the policy level and you know, the Biden administration Biden's campaign had a plank around caregiving and around making some change including implementing paid leave and other policies to support caregiving. And of course there have been challenges in getting anything passed or implemented <laugh> over the past couple of year, the past few years. So that has been really disappointing to see I think paid family leave, especially paid family leave that's flexible for people so that they can take the time as they need it is really critical. I think honestly universal healthcare in the US would go an enormous way because a lot of why caregiving is so difficult has to do with a for-profit health system that is always cutting budget and then like shoving those care responsibilities off onto family caregivers.
(28:33):
You know, the hospital to home movement is great and we want people to be at home but without adequate support for the families. You know, those costs are directly born by caregivers. You know, I would love to see actually direct pay for caregivers in some way, some kind of compensation. Tax credits would be a great start for caregiving. There are some place, some states under Medicaid family caregivers can get paid a very low rate and interestingly the Veterans Administration has a program for paying caregivers of veterans. So that's a really interesting and I think promising model. Essentially I would like the US to implement a social welfare state, which it probably will not do <laugh>, but but I think that would really help caregivers a lot. And this is all of course speaking to the US context. I do also think outside of policy there's a lot that workplaces and companies could do to support their caregiving employees, which would have a really big effect on the companies in terms of diversity, equity and inclusion because caregivers are disproportionately women and within that disproportionately women of color.
(29:50):
And so supporting caregivers in the workplace could lead to better employee retention just speaking to the company's interests along with, you know, the interests of the caregivers themselves and there are studies showing that many caregivers hide their caregiving status at work or it's seen as kind of taboo or, or a challenge to discuss it openly in the workplace. And I would love to see kind of a cultural shift around that.
Harper Spero (30:18):
I love that you bring up that point. I think it's such an important one and I think it's sort of in the direction that we're heading in general related to people starting to be, to disclose having invisible illnesses or chronic conditions in the workplace and feeling like employers are a bit more compassionate and understanding and and making more accommodations. I think it's slowly happening and I hope caregivers are, you know supported in similar ways. So you mentioned your book and I'm really curious what called you to actually put pen to paper and go, this book doesn't exist in the world and I need to be the one that writes it.
Kate Washington (30:58):
I was putting pen to paper or you know, fingers to keyboard really even when Brad was in the hospital with his stem cell transplant, I had had to really stop work as a freelance writer, but I did stay in an online writing workshop and so often what I was doing was just banging out an almost like a rant or practically a diary entry before the deadline for pages that you know, where we swapped pages and exchanged feedback and the pressures of being in the hospital were kind of, or and by Brad's side. And balancing that with home were really the only things on my mind, the only things I had room for. So I kept a lot of those writings that I was doing, you know, in the hospital or or on breaks or things like that. And some of those obviously in very altered form ended up making it into the book.
(31:50):
Or you know, they formed the backbone in some ways of the memoir portion of the book. At the same time I was also keeping a blog of Brad's Illness and recovery in the hospital that we used for communicating with friends and family. And originally we did it jointly and then he got too sick to be able to write anything pretty quickly actually. And so I was maintaining that just as a way of updating people on his progress. So that because I do wanna point out also one of the things that can be challenging for caregivers is keeping in touch with people and keeping them informed. You know, that it's very time consuming as I'm sure your listeners with Invisible Illnesses will also know from their own experience personally, like telling everybody what's going on with you can in itself can be a full-time job.
(32:41):
So we were maintaining that, that blog as well. I was maintaining it. So I was writing about the experience really from the beginning but originally not with any thought of putting it into a longer format. But as you kind of said in the question, a book like this, I couldn't find one that existed in the world. And essentially I wanted to find something that explained to me why this experience was so difficult. And what I mainly found in the caregiving space at the time were how to books. Which were great but also often geared toward a pretty different experience than mine cuz a lot of them were geared toward, toward elder elder care and memoirs that were more strictly focused on the person's own experience. And that often took a viewpoint that I saw as kind of sugarcoating or a little bit more of the ending up with the redemptive narrative of like the rewards of caregiving, which is a very valid experience but in a lot of ways was not my experience, you know, I did not find this sudden shift in my life particularly rewarding though there were things about it that were, you know, opportunities for growth and I really wanted to write something and came to the idea of writing something that would look more broadly at the cultural context and that structural context that we just spoke about.
(34:13):
The other strand, you know, that made it into the book was that while Brad was very ill, I was returning to comfort reading for me, which meant older children's books, like children's classics, like little women like the Anne of Green Gable Series, things like that. And the Victorian novels, which I have a PhD in Victorian literature and so like rereading Jane Air or Middle March or the classics that I had loved for a really long time was kind of all my attention span could handle. And when I started returning to those favorite books, I started noticing a lot of caregivers in them that I had completely overlooked in my reading earlier. And so the earliest writing that I published about caregiving was a look at a caregiver's story in an Anne of Green Gables novel, one of the later books in that series. And comparing it and thinking about it analytically but also comparing it to my experience.
(35:15):
So out of those kind of early writings I started to think like there's really kind of a, a number of things that could come together here and this book or this idea is not something I'm seeing expressed. And I start once I also started researching a bit more and seeing like how many caregivers are out there and what some of the pressures are on them, I started to see like, oh this is actually not only a big population but potentially a big market and something that people ought to be paying attention to. You know, it's, it's a coming crisis and in some ways I think the pandemic showed us in a lot of ways that the crisis around care is already here.
Harper Spero (35:57):
And it's so fascinating that you were into these books before this time and then took a liking to them and realized these characters and found the threads. That's so cool. I really appreciate you acknowledging that you chose to go the honest route and how many people were sugarcoating their stories because what's the point of that? Who wants to read that? I mean sure there may be positives in people's experiences but to make it sound all positive just feels super unrealistic. You know, I'm interested to know, when I was looking through your website, you have this amazing playlist that I acknowledged before we started recording because it has talking heads on it so everyone should go check it out. We'll link it in the show notes. And do you also have an amazing list of resources for caregivers and I'm really curious to know, was this a list that you explored and discovered yourself in real time or is it something that you discovered when you wrote the book and this became more of a project for you?
Kate Washington (36:58):
I would say mostly the latter actually. I was not really connected with very many resources when I was in the thick of really heavy caregiving. You know, one of the resources that I mentioned is A A R P, which has an amazing, you know, wealth of caregiving resources including things like financial and legal documents that you can fill out if you need to and a lot of how-tos and things like that. And there are other sites that provide those things as well. But I did not really know about that. I did mention earlier I had talked to the Leukemia and Lymphoma Society, which does have some resources available and I encourage people to contact any kind of disease organization, you know, for yourself or for a loved one because they often do have resources including financial resources and aid for people who need them. But mainly I would say the resource I was most connected to was kind of the hospital social worker who was completely overburdened but did connect us to some support groups like my, I took my daughters to an art therapy support group here in Sacramento.
(38:11):
I did not go to a support group though because I was too busy <laugh>. So that is a real challenge I think for caregivers generally or also for the people suffering from illnesses is like you're so overwhelmed with dealing with the illness and all of its needs that seeking out support and trying to get resources and help is kind of a bridge too far for what your inner resources have available. The title of my book already Toast actually comes from a day when I was told by my husband's doctor that I should seek out resources. I was really upset. I was in an appointment, it was shortly after his stem cell transplant and after he'd gone home from the hospital we were in this appointment, I started crying and I just couldn't stop. And the doctor looked at me and said, you know, if you can't care for yourself, you can't care if you don't care for yourself better, you won't be able to care for him.
(39:07):
Like have you looked for, I forget what he said, you know, but something like a support group or something like that. And then I was kind of mad because I felt like, well I deserve care whether or not I'm caring for him. You know, it felt like I was very much being told to do better as a caregiver. But I went home and I googled and when I typed in caregiver and started with burnout, a quiz popped up and about caregiver burnout and I took it and the result that I got was, you're already toast with this like picture of a burnt piece of bread. And that, that stopped me in my tracks and I'm not sure I ever actually got around to getting to the resources part <laugh> cuz I was so much, you know, it said like, you should go get a massage or take a break. And it's like, well I get massages when I can and I do take breaks and it's still really overwhelming. And I think at that point I kind of gave up <laugh>.
Harper Spero (40:02):
Wow,
(40:04):
It's amazing. Thank you. Quiz for the reminder and for the book title <laugh>, it goes back to my original, you know, question a while back of how to take care of yourself and to prioritize yourself when you're going through all of this. And I think it really drills home this concept of asking for help and preparing in advance, which is hard to do because I think it's one of those things where you're so focused on what's right in front of you, right this moment that how can you truly prepare and go, all right, in a few months from now this is gonna get worse. These are the things that I should be doing for myself, for the person who's not well and it's hard to like navigate what that looks like timeline-wise. So I think it's having tools like your book and this resource. Tell me the website again, that was the like you can plug in the tasks you need
Kate Washington (41:02):
IA n a care and it's an app that people can kind of join and take on tasks that you need. I mean something like sign up genius Meal Train doesn't really do it, but some of the like sign up for a task websites would kind of let you do the same, same thing, you know, if you wrote down the tasks and people could just kind of log in and say like, yes, I'll, I'll be the one who does your grocery run.
Harper Spero (41:25):
Yeah, I just think that like, those are the kind of things that if someone tells you this would be a really great thing to do, you do it, but if you don't know about it and you're not thinking ahead, it's likely that you're not gonna get into something like that until later in the game. So I'm curious, what message would you share to people who have not been caregivers yet in their life? What do you want them to know?
Kate Washington (41:49):
One of the things that I do want people to know is that this is probably going to be a life stage for almost everybody at some point. Whether it's around a child and caring for a child, an elder loved one, a spouse, a sibling, something like that. Just the numbers of it show that this is, you know, coming for many of us and we'll we all kind of will need care in our, in our turn. So thinking about it, you know, not that people have to do a lot of preparation, but thinking about this is something that may be part of your life in, you know, the short term or the long term I think is valuable just to have the mindset so it's not such a shock, which is one of the things that was difficult for me was that I was completely shocked in terms of practical advice that around that, you know, one of the things that people can do is make sure they have like healthcare paperwork done, like advanced directives and medical powers of attorney. Just like with whoever your emergency contact is, make sure you just have that on hand so that it's not a stressor if an emergency comes up or if somebody is ill and you've kind of forgotten about it, you know, people can do, if you are expecting something, you know, long-term care insurance is one place to look.
Harper Spero (43:12):
So I'm thinking about the fact that you went through this experience yourself. You wrote this book and clearly did tons of research and learned lots about how broken the system is. What do you wish you knew before you went through this process as a caregiver and before Brad got sick? What would've been valuable for you to have gone through this?
Kate Washington (43:33):
I think it would've been really valuable to understand more about the resources as we spoke about earlier, that that there were resources and help that I could have accessed. It would've been valuable to have some coaching or experience with doing a better job of setting boundaries, which has been a long time failing of mind around, around care or loved ones because that is something that you can do as a caregiver, even in a crisis situation. You know, it's really important to guard some time to not give everything you've got because then you don't have anything left for the next day or the next crisis. So knowing more about that, thinking about, you know, it's okay to ask for help earlier, it's okay to ask for help before it feels like a crisis. And you know, my experience with like extreme illness was so limited in some ways I think it would've been valuable to understand like how intense it can be, how long it can go on, and how the after effects can really reverberate once it is in a different kind of phase. As you can tell from the fact that we're separated, we really struggled to do repair and change the relationship back because especially in a spousal relationship, it became really, you know, lopsided or different from of course what the marriage had been like prior to the illness. And I think their relationship shifts in any caregiving relationship, you know, with parent child, it's often that role reversal that people struggle with a lot. So understanding the emotional impacts and thinking about them proactively, I think would've been a really big help to me.
Harper Spero (45:26):
Yeah, and I think, again, I think there's so much of this that you can't know until you go through the experience and people have to choose to empower themselves to buy a book like yours and go, all right, I need this tool, I need this resource. Or I've never been in therapy or been in group support before, I need to do this now. But people have to want to do that for themselves and see that they need that and anticipate, which I think is part of the challenge that I'm having here in hearing all these amazing suggestions you're making that people have to take that initiative. So what's your response to that?
Kate Washington (46:03):
I mean, it is hard. I think it's not something that anyone really wants to think a lot about before they're in it, which makes it challenging. Nobody wants to go to the dentist for the cleaning either for a <laugh>, for a preventive treatment kind of thing. We do it and that's more of a norm. I think in some ways I've heard about, not a lot, but some workplaces offering, you know, kind of proactive discussions or talking about thinking ahead about care and care needs. I think raising awareness and having more conversations like these and talking much more about caregiving is just valuable. I, I've been noticing actually with Jimmy Carter having gone into hospice and Rosalyn Carter, you know, has this really wonderful caregiving foundation and has been an activist around caregiving for many years, but I've seen, you know, a, a number of articles highlighting caregiving and her work in caregiving because of the news peg, you know, of President Carter having gone into hospice care. And I think that those kind of things like just giving people that sense of like, this is a normal part of life and is likely to be a normal part of life, if not for every individual, at least for every family is really valuable.
Harper Spero (47:26):
Thank you for that. And thank you for being so honest about this topic because as we acknowledge today, there's not enough talk about it. So I'm glad that you chose to be the person. I'm sorry you had to go through the situation that led you to it, but I think it will empower so many people and hopefully help people also create boundaries as I'm hoping it helped you as well. Where can people find you and by the book?
Kate Washington (47:51):
The book is available on Amazon online. It's in hardback, paperback audio and e-reader format. So it's, it's very widely available for people. I always like to say you can also request it at your local library or at an independent bookstore if they don't carry it. I love library readers and love to see it in libraries, so I always encourage that as well. You can find me. My website is ka washington.com. I'm on Twitter and Instagram at Washington Kate though, given the state Twitter is in these days. I'm not doing a great deal over there right now, but I'm pretty easy to track down.
Harper Spero (48:35):
Amazing. Thank you so much Kate. Thanks for tuning into Made Visible. We hope you learned about something new today. If you enjoyed this episode, please take a few minutes to subscribe, rate and review the show on Apple Podcasts. Your support means the world to us. Visit made visible stories.com to check out our writing workshops, corporate offerings, and more information that can help you in navigating life with an invisible illness. Follow made visible stories on Instagram. See you next week.