There are more than 50 million unpaid family caregivers in America. Too often, their work – and the physical, emotional, and financial toll it takes – goes unseen and unheard. At 42 years old, Kate Washington never expected to be one of them. But when her husband was diagnosed with a rare form of T-cell lymphoma, she became his primary caregiver. A journalist and writer by trade, Kate wrote about her emotional journey as a caregiver, wife, and mother of two young girls in a revealing new book, Already Toast: Caregiving and Burnout in America. Kate joins us to share her story and give advice to the millions of people who are in the shadows caring for a spouse, parent, or adult loved one while also doing the best they can to care for their families and themselves.
Listen to this episode to learn:
For more information, visit https://www.kawashington.com/ and read Kate’s New York Times Op-Ed, 50 Million Americans Are Unpaid Caregivers. We Need Help.
A family caregiver's story
Intro: Welcome to the Equal Parts Podcast brought to you by Care@Work.
Emily Paisner: Being a working parent is hard, and it's even harder if you're one of the 50 million Americans who's caring for an ill or aging loved one. Kate Washington is a mother writer, editor, and author of the new book, Already Toast: Caregiving, and Burnout in America. She joins us to share her caregiving story where at the age of 42, she was thrust into being the primary caregiver for her ill husband, while also raising two young daughters. In this episode, Kate gives us an up close look at America's broken family care system, and she gives advice to others who are in the throws of family caregiving, have a listen.
Kate, thank you so much for being here. Welcome to Equal Parts.
Kate Washington: Thank you for having me.
Emily: Your new book is such a moving and powerful story about how caregiving has completely transformed your life. It's based on your personal story, taking care of your husband. I was hoping you could just start out by giving us a little bit of background on your husband's illness, how you first learned he was sick and what that was like for you and your family.
Kate: Sure. Well, we first started to get an inkling actually on my younger daughter's very first day of kindergarten. My husband came into the kitchen where I was working and mentioned that he had found some odd lumps along his jawline. He's always worn a beard, so they were a bit hard to notice. He said, "Should I call the doctor?" I said," Yes, I think you should. That's weird." He had lost a lot of weight over the previous several months. It took several months of working with physicians and pushing for biopsies and diagnostic tests to get a diagnosis. He had a rare type of T-cell lymphoma.
At the time of his diagnosis we weren't really sure how much it would change our life because the doctors really felt it might be relatively benign. There are many-many different kinds of lymphoma that behave in different ways. They called it an indolent lymphoma, when it might not ever really pose that much of a problem or might be a watch and wait in terms of treatment. But it turned out that it turned very aggressive and he needed emergency chemotherapy later that spring and that went into a relapse and a STEM cell transplant and a long ordeal of treatment and eventually a second type of lymphoma.
Kate: It was a long haul, but it snuck up on us slowly and then really changed everything.
Emily: Can you tell me a little bit about why you thought it was so important to write this book and tell your family's story?
Kate: I was a writer first before I was a caregiver. That was the work I've done for many years and my background is actually in food writing. Throughout my husband, Brad's, treatment and the most intense years of my time as a caregiver, I was looking for different kinds of support, looking for an experience that mirrored mine in the existing writing out there about caregiving. While I found a lot of great material and a lot of great practical advice, I didn't find anything that felt quite like my experience. I was writing on and off as a coping mechanism throughout his illness.
I think a lot of caregiving takes place in private and in isolation and caregivers can feel really isolated. I hope that this book will be something that people can recognize their own story in, even if it doesn't mirror mine exactly, and help people feel a little bit less alone.
Emily: You wrote that your life was collateral damage to your husband's illness. Can you talk a little bit more about that and how you felt like you were losing your sense of self as your husband's caregiver?
Kate: That's a metaphor, the collateral damage, that I used warily because I think there's some questions around the metaphors of a battle or a fight in treatment, but there's certainly no question that the medical establishment approaches a major illness with a single-minded goal and focus of defeating the enemy, the illness. A lot of family caregivers, myself included, are pulled along for that and it's assumed that we will step up and do what needs to be done in terms of treatment in terms of support for that urgent battle, for lack of a better term.
I really started to feel like I was almost invisible to my husband's physicians, who were doing an amazing job of treating him, I should say, but invisible as a person of my own with my own concerns, my own life. I was the mother of children, I was a writer, I was doing many other things and had many other identities and those all started to feel subsumed under the identity of being my husband's caregiver. I was much less able to work during his treatment and that was a key point of identity for me. Losing those things really started to make me feel erased.
Emily: There's such a range of emotions that caregivers go through. In your book, you talked about the fact that you were starting to lose empathy for other people. Can you talk a little bit more about this, both emotional and psychological rollercoaster that this put you through and what outlets you found that helped you cope? I imagine that there are other people listening to this that might find that really helpful.
Kate: When people are burned out on a caring role, they tend to lose that empathy and feeling for people that drew them to the role in the first place, and that was the case for me. I also found that I was somewhat self protective about my emotions. There was a long period when it looked very much like my husband was going to die. I think I dissociated a little bit because it was so hard to cope with that potential reality.
In terms of coping mechanisms, I tried my best to keep up with all the forms of self care that get recommended; I kept up with going to the gym to the best of my ability. It was really critical for me to stay in therapy. I wish that therapy were more widely available and more accessible for more people because I think it's really critical. Online support groups are a really great outlet and there are a lot of organizations working in this space to provide people with support and connections. Some disease-specific organizations are offering caregivers support and that can be a way for people to get what they need.
It's really important to accept help that's offered, don't try to be a superhero and go it alone. Ask the people who love you for the help you need when you can and when you feel able, when you have a little bandwidth.
Emily: Your girls, they were young when your husband was first diagnosed, they were five and nine, I cannot even imagine that. Can you talk about how being your husband's full-time caregiver affected your parenting and your relationship with your girls?
Kate: It had a pretty profound effect on them. It obviously had a very profound effect on my husband's and my partnership as parents, I wanted more time for and with them, that just was not always available, but I did try to carve out and keep times that could be just for us. I also used some resources, counselors and art therapy support group run here by a local hospital for kids struggling with illness and cancer in the family and a summer camp called Camp Kesem, that is for kids affected by a parent's cancer, and has become like a really important force in my kids' lives.
Having the girls really provided some much needed joy and happiness in our lives throughout a really hard and sad time. I have a lot of memories of times with them or family traditions that we tried to keep up. I dropped a lot of unnecessary things, activities that they weren't that into, but I tried to hold hard to keeping up with the things that meant a lot to all of us.
Emily: You've wrote a very powerful op-ed in the New York Times sharing your story and really urging the Biden Administration to help America's more than 50 million family caregivers. You got a lot of responses. Was there anything that surprised you about the people that responded?
Kate: I wish I could say I was more surprised by the volume and intensity of the response because that would indicate that caregiving and unpaid family caregiving isn't as big a strain as I thought it was. As it was for me and as my research for my book revealed that it was nationwide. The response to that piece blew me away just in its sheer volume, but at the same time as you've said your question, there are more than 50 million family caregivers, and many, many, many of them struggling. There were some really heartbreaking stories in the comments, I received a lot of personal feedback. I think it really revealed the breadth of the problem and how much we need the measures that I was arguing for in the op-ed to support people who are trying to support our most vulnerable members of society.
Emily: There's clearly a national care crisis that has been revealed throughout this pandemic. The new administration really is making care a priority but you always seem to hear about child care being talked about more so than adult and senior care. Can you just talk a little bit about what policies you think would truly help America's family caregivers?
Kate: I think you're right about that child care often gets the spotlight. In researching my book, I talked to somebody who pointed out, well, kids have the cuteness appeal when you go to legislators, which I thought was interesting, but I do you think they're very analogous issues. We're seeing this year that we'll just have the baby boomers turn 75. The gap in care and the need for intense care for people is only going to grow with time.
I think that some of the policies that would really help, perhaps, most critical is making paid family leave universal. It is shameful, that we have seen no progress on this issue since the 1990s, and the passage of FMLA, which is unpaid leave, we really need paid leave to support caregivers and allow people to care for their family without fear of having to leave their jobs.
Universal health care would be an immense support. That sounds like it's for the ill people but caregivers spend a huge amount of time on bureaucracy, they suffer economic impacts because of the challenges of paying for care. It's a huge struggle and added strain that affects all of society, including caregivers. We're all going to need care at some point during our lives. That, to me, is a massive social issue that we should be addressing as a society.
I think tax credits or direct payments to unpaid family caregivers would also mitigate the economic effects that can be so devastating for caregivers, and would be a really important source of support. There are many more and I talk a little bit in my op-ed and the Biden Administration's platform prior to the election spelled out a lot of other measures, but those are, to me, three of the biggest ones that would have a huge effect.
Emily: At the end of your book, you left us with a very simple but very powerful thought. That was, "If society wants us to keep caring for others, it's going to have to show a little more care for us." On that note, I just want to ask you two questions. One is, how your family is doing today? Just as important, is, how are you doing?
Kate: Well, thank you. Our family is doing pretty well, on the scale adjusted for being a year into a pandemic that has upended everybody's lives. Both of our daughters are still doing school from home. We are able to hunker down, we have been fortunate that my husband and I have not been infected. He is much more independent than he was at the time that I was writing the book about. He had lost his vision after a stem cell transplant but has recovered it, thanks to surgeries. He's able to manage most of his ongoing care for himself. He is disabled and retired from his work because of chronic illness, but a lot of that is manageable by himself. So, I think of myself, maybe more as a care partner.
That leads me to the second question of how I'm doing, which is, much much better. I'm very fortunate. I know there are millions of people and caregivers out there whose care responsibilities do not ease as mine did. I'm really cognizant of how fortunate I've been, we're also very privileged to have stability and that my husband made it through his ordeal. Overall, we're doing okay. [chuckles]
Emily: I'm glad to hear that things are at least a little bit better from where you were when you wrote this book. It really was such a powerful story and thank you so much for sharing. it with us. I know that other caregivers will find it to be an invaluable resource. It's just truly an amazing book. I hope our listeners will go get a copy. Thank you so much, Kate, again for being here today.
Kate: Thank you so much. Thank you for having this podcast and highlighting issues of care that are so important.
Outro: Thanks for listening to this episode of Equal Parts. See you next time.
Emily: Wait, before you go, I just want to tell you a little bit about Care@Work by Care.com. They work with some of the world's largest companies to offer family care benefits to their employees. If you're one of the lucky ones who already has care benefits at work, use them. If you don't, ask for them, it's a real lifesaver. To learn more, visit care.com/careatwork. Again, that's care.com/careA-Twork.