By Richard Eisenberg, Next Avenue Editor
At the American Society on Aging’s “On Aging 2021” conference April 6, Caring Across Generations Co-Director Ai-jen Poo said that caregivers are on the front lines of aging and “we are wholly unprepared as a nation to what is unfolding.” Kate Washington, author of “Already Toast: Caregiving and Burnout in America” knows this all too well.
Next Avenue: How would you describe your role as Brad’s caregiver during the time that you write about it in the book?
Kate Washington: In some ways, I think of it as kind of a showrunner for a TV show, the person to whom all the problems come, who’s keeping all the balls in the air and that things are running on time. There were a lot of things that felt to me like pretty high-level medical tasks. I also want to call out the emotional burdens and challenges of care. Brad had a lot of emotions to manage. I had a lot of emotions; our kids did, too. So to me, it felt like kind of a perfect storm of all of the responsibilities of family life in one really, really intense experience.
And it was pretty sudden, and you weren’t prepared for it because why would you be, right?
Yeah. That’s exactly right. I mean, we were not thinking of Brad as somebody who was imminently going to get ill, but it can happen to anybody. We were plunged into it really suddenly. The suddenness of one day he seemed healthy and the next day he was in the hospital with an urgent emergency that seemed life-threatening was a real shock.
I want to go backwards in time. But let me start with where things are today. How’s Brad? And how are you?
We are doing better. Brad is chronically ill with Graft-Versus-Host Disease, which was the primary complication of his stem cell transplant. So, he considers himself, and is considered, disabled. He took a disability retirement from his career as a professor and he’s still in treatment regularly; still takes a lot medication.
He has had four eye surgeries. But his vision is almost completely recovered so he can drive again, which has been amazing.
I’m in more of a consultant role now. It’s a lot less of a hands-on role and much more of a kind of coordination and us talking together about things. I always have in the back of my mind: Something could come back up at any moment.
Brad has been in remission since the second type of cancer he got, but he has had some scares with test results. I’m always vigilant about things like fever or watching out for different side effects. So I’ve always got an eye on him.
“I think a lot of the medical system doesn’t really take account of family caregivers as an asset.”
And the pandemic really heightened that.
There were times during the pandemic when he was really frustrated with limitations on activity and I had to be: ‘No, you actually should not go to the grocery store. I should be the one going to the grocery store.’
It was a big strain thinking about him during the pandemic because he does continue to be medically immune-suppressed. But he’s doing much better than at the period I wrote about in the book.
And I would say that I am consequently also doing much better.
There’s still a lot. Like, our marriage kind of changed irrevocably in a lot of ways. But our kids are older now — they’re fifteen and eleven. So things are more stable now.
You write that if cancer is often described as a battle, you felt like your life was collateral damage. Could you talk a bit about what you mean?
Absolutely. I think the battle metaphor is a little unfair because it puts a little blame on the ill person, but I kind of borrowed that metaphor because I think a lot of the medical system doesn’t really take account of family caregivers as an asset — the work that family caregivers are doing and the other responsibilities they might have.
It’s almost like caregivers are a necessary thing that just gets sucked into the orbit instead of looking at the patient in a social and familial context that’s as important as the context of their health and diagnostic status.
And so, I sort of felt like the doctors started to wage this really intense war against Brad’s cancer. And if some of the parts of my life that were important to me had to fall by the wayside, that was not really their concern.
In some ways, it had to stop being my concern as well, because the needs that Brad had were urgent.
When there’s an urgent health crisis, you have to focus on that. But it is a hard thing to be the person who has to drop everything to focus on it. And it was hard for me.
As you’re talking about it, it seems to be like there’s nobody in the health care system as it’s set up who is thinking about the caregiver.
Certainly, there are social workers, hospital chaplains and support staff. In some cases, you can get care coordinators that walk you through complex or difficult treatment. But in many cases, we have a profit-driven health system and so things that are outside of that profit model — like supporting a caregiver— maybe don’t look great on a balance sheet.
Your book is brutally honest and sometimes you’re very hard on yourself. You write that you had an uncomfortable stew of resentment, guilt, and duty simmering beneath the surface every day. Can you talk about those feelings?
It was tough to experience them and then it was tough to write about them.
I think women especially are socialized to sugarcoat things and be the people who are caring and who are glad to do it. And often I was glad to do it. And often I really was not, because it’s a hard role.
What I really wanted to do was provide a place where other caregivers and people who are struggling with some of those same emotions could feel validated. I want people to get a sense that you may want more than anything to be supporting the person you love and at the same time, you may be struggling with it on a really deep level. And I was.
You write that people were always asking ‘How’s Brad?’ which obviously they would want to know, but they hardly ever asked how are you were and really mean it, right?
Yeah. In fact, I just had the opportunity to sign my book for one of my oldest and very best friends and the way I signed it was: ‘To the only person who always asked first how I was.’
“I had absolutely no idea that I would be expected to do [certain medical tasks] until I was told ‘Well, he’ll be going home on IV antibiotics and on oxygen.'”
How do you think caregiving has changed you as a person?
I don’t want to say it radicalized me, but in a way it really opened my eyes more than ever to how little social support there is for people doing really, really necessary work. I think it made me both more patient and more impatient in different regards. It also helped me feel more grateful for the times when things are good.
So, I think it changed me in a lot of different directions. I’m not sure if it’s all to the good, but it’s definitely part of who I am.
You write in the book a little bit about PTSD. Do you feel like you had, or have, it or that other caregivers do?
I definitely feel like I had after-effects from caregiving and lingering stress and burnout and kind of lingering anxiety as well. I wouldn’t want to presume to diagnose anybody else, but I think it’s a question that really invites more study.
You wrote that at one point you lost $80,000 in income because you had to cut back on the freelancing you were doing.
Because I was a freelance writer, I was able to simply stop taking assignments and stop seeking out assignments. But that was not optimal financially for us for obvious reasons. We were really fortunate that Brad had great benefits as a unionized professor at the one of the California state universities. And we had some other family resources.
But certainly, it was a career setback for me. It was a good solid two plus years of almost no work.
How prepared did you feel you were as a caregiver when it started and how prepared do you think most family caregivers are?
I had absolutely no idea that I would be expected to do [certain medical tasks] until I was told ‘Well, he’ll be going home on IV antibiotics and on oxygen.’
So, it came as such a shock to me how much care I was going to be providing at home with little support. They send these giant boxes of supplies and things that you have to unpack and figure out and put everything together. And it was really overwhelming.
And there’s so many millions of family caregivers in exactly that circumstance.
So how did you do that?
I remember doing these IV antibiotics in an external PICC [peripherally inserted central catheter] line on Brad’s arm and they give you this acronym for the order of the things that you’re putting in the line. They gave me a little printout sheet and I’m a rule follower, so I would follow the directions. But the first couple of times I was just shaking.
It’s a lot to kind of take on for people without medical experience.
And that was a simple procedure compared to the responsibilities for other families, like colostomy bags and wound care. The responsibilities of what people are doing in their homes are mind-boggling. And nobody ever talks about it publicly.
Was there a hardest time for you as a caregiver?
It was definitely right after Brad had come home from the hospital after his stem cell transplant. He could not walk independently. He could not see; he needed assistance with toileting, showering, everything. It was hot, like a hundred and five degrees outside. And we had in-home caregivers, so there would often be four or five people in and out of the house all day, plus the kids.
It felt like there were no breaks. Brad came home so fragile with such high needs, on massive amounts of medication. There were constant calls to insurance, to the doctor, he had to go to a lot of appointments, there was a wheelchair. So just the pressures of that situation without ever having a time when I would come home and the house would be clean and quiet. That was not happening.
The big theme of the book is burnout. Why do you think so many family caregivers feel burnout?
I think it’s a combination of the intensity, the hours and the emotional strain. For many caregivers, it’s the unknown duration of the stress, the high-pressure economic challenges and sometimes interpersonal challenges. There’s very little respite.
‘Already Toast: Caregiving and Burnout in America’ by Kate Washington
Most people are doing caregiving behind closed doors. They feel exhausted and isolated and like nobody’s seeing them. And the result is this feeling of real fragility; being frazzled and having a really hard time with the necessary element of providing care, which is empathy.
It burns people’s emotional candles so much that it saps the very thing that they’re trying to do in the first place.
And I would guess that there must be sort of a feeling of stigma, too, that you don’t want to complain because people are going to say how selfish you are.
I think so. I did worry that I was being incredibly selfish.
What could have helped you feel less burnout and what could other caregivers be getting to reduce burnout?
I did have a lot of family support and that was incredibly helpful. But I do think that there could be a more integrated approach to care that prioritizes in-home care. I think that would go a long way.
Plus our entire social safety network in America. Just that one other thing (laughs). If we could get Biden’s caregiver tax credits and better job protections and wages for care workers and more access for families to home and community-based care.
Is there anything you would recommend to other caregivers that might help them get through difficult times?
I would say: Accept the help that you’re offered and ask for the help that you’re not offered. And I think that people recognizing that their need for breaks is not selfish — it’s self-preservative — is critical.
You finish the book by saying, ‘If society wants us to keep caring for others, it’s going to have to show a little more care for us.’ Is there anything more you’d like to say about that?
We’re all born needing care and we’re going to need it as we go. And we’re probably going to die needing care as well. And if we don’t attend to that need as a society, we’re denying something really fundamental about ourselves, that we exist in interdependence with each other and that that’s not weak.