ALREADY TOAST: Caregiving and Burnout in America
KATE WASHINGTON
Beacon Press
$16.95 trade paper, available now
Rating: 5* of five
The Publisher Says: The story of one woman’s struggle to care for her seriously ill husband—and a revealing look at the role unpaid family caregivers play in a society that fails to provide them with structural support.
Already Toast shows how all-consuming caregiving can be, how difficult it is to find support, and how the social and literary narratives that have long locked women into providing emotional labor also keep them in unpaid caregiving roles. When Kate Washington and her husband, Brad, learned that he had cancer, they were a young couple: professionals with ascending careers, parents to two small children. Brad’s diagnosis stripped those identities away: he became a patient and she his caregiver.
Brad’s cancer quickly turned aggressive, necessitating a stem-cell transplant that triggered a massive infection, robbing him of his eyesight and nearly of his life. Kate acted as his full-time aide to keep him alive, coordinating his treatments, making doctors’ appointments, calling insurance companies, filling dozens of prescriptions, cleaning commodes, administering IV drugs. She became so burned out that, when she took an online quiz on caregiver self-care, her result cheerily declared: “You’re already toast!”
Through it all, she felt profoundly alone, but, as she later learned, she was in fact one of millions: an invisible army of family caregivers working every day in America, their unpaid labor keeping our troubled healthcare system afloat. Because our culture both romanticizes and erases the realities of care work, few caregivers have shared their stories publicly.
As the baby-boom generation ages, the number of family caregivers will continue to grow. Readable, relatable, timely, and often raw,
Already Toast—with its clear call for paying and supporting family caregivers—is a crucial intervention in that conversation, bringing together personal experience with deep research to give voice to those tasked with the overlooked, vital work of caring for the seriously ill.
I RECEIVED A DRC FROM THE PUBLISHER VIA EDELWEISS+. THANK YOU.
My Review: There's a slightly dystopian feel to reading this book. It's as though all the parts that were deemed too dark for fictional post-apocalyptic nightmares during the editorial process were snipped out then dumped into this tale. I mean, reading about a young wife and mother whose entire life was redefined by her fit young husband's horrific, aggressive cancer's near-success in driving him into the grave as she worked and raised their kids and managed his increasingly horrific treatments, all while fighting their insurance and medical providers? That's a bridge too far! It's too painful, it's too appalling!
Graft-versus-host disease (GvHD) is a confusing, uniquely modern ailment, like the inverse of rejection in a solid organ transplant. If you were to need and get a kidney donated from someone, for instance, there’s a good chance your immune system would identify it as a foreign body and attack it. Thus, organ transplant recipients are given immune suppressants. In a stem cell (or bone marrow) transplant, sometimes the new immune system (the graft), in its unfamiliar environment, looks around and sees the entire body around it (the host) as foreign. It then, in unscientific terms, freaks the fuck out. GvHD can pop up in the liver, skin, gut, eyes, and plenty of other spots; its attacks, as with many autoimmune responses, often seem random.9 The possibility of GvHD—which is termed “acute” when it arises within the first 100 days of transplant and “chronic” when it continues in the longer post-transplant period—is why stem cell transplant patients are kept on immunosuppressant medications even though the effectiveness of the transplant at fighting the cancer depends on the immune response. The medical team has a delicate balance to maintain: just enough immune response to keep the cancer from returning but not so much that GvHD gets out of control.
Yet it's completely factual.
On one bad day I ran into {her husband's} nurse coordinator from the Cancer Center in the elevator. I told her about how bad Brad seemed, and how much pain he was in, and how hard it was to watch. “The good news,” she said with gentle compassion, “is that he won’t remember much of it.” She was right; he doesn’t, at least not the worst of it. But I do. Part of the onus of caregiving is carrying memory.
But, as insurance-company "care managers" will constantly remind you, "your family will be there for you! After all, you'd do it for them." Newsflash: No, they aren't; and, knowing what I know, I would never, ever do this again.
The love of my life died of AIDS thirty years ago this May. I was in Kate's shoes, sans legal rights, as his bizarre diseases racked up their tolls on him...trying to find answers at that time wasn't the impossible task it was a decade earlier, but it wasn't easy and it's amazing to me how many people will ghost you when you're most in need of support.
I needed a human connection of some kind in order to face the next frightening day, which felt like a closing trap. So I called a suicide hotline—the thing we tell all people experiencing despair to do. There’s help out there, we’re assured. I called, nervous. The voice at the other end of the hotline asked if I was actively suicidal. I said I wasn’t planning anything right then but I was in despair. She asked if she could place me on hold to continue talking with someone in more serious crisis. I thanked her and hung up.
–and–
What chafed the most was not the private demands from my husband, but the public, official ones from nurses, doctors, and therapists, many of whom seemed to discount my personhood in any other realm than as a caregiver. I wanted them to recognize my humanity. I felt, on every level, unseen in my life, even as I was holding together the lives of four people. The longer I acted as a caregiver, the angrier I found myself at that erasure.
Oh yes...that rang a bell. The eternal demands, the unceasing needs, the fact that one simply needs...lunch. A shower. A half hour alone.
Burnout kills empathy and makes worse caregivers of all of us who suffer from it. More than that, it made me a worse person: less kind, less patient, less fun to be around. Being so depleted made me miserable and being miserable made me, frankly, a bitch. The trouble is that if you’re burned out you can’t take care of yourself very effectively, either. I was coping as best I could: going to the gym, trying to get enough sleep, maintaining a few supportive friendships—at least by text and online. But during the summer of 2016, often the only solution I found for my burnout was to leave home at every opportunity.
I was so very deep into caregiving that I cared not at all. And so was Kate. So are so many, so are the ones who (unlike Kate) can't pay for help and can't rely on anyone...it's a vicious and unforgiving system of "health"care" because it's neither interested in anyone's heath nor in the smallest degree caring.
For many caregivers, their duties end only with the death of their beloved, a fact that necessarily comes with loss and grief and sometimes a guilty, perhaps half-smothered relief.
–and–
Despite the obvious value of {caregiving} there is no remuneration for most American caregivers. The time spent helping a family member is typically uncompensated by public programs or insurance, though there are states with programs offering caregivers economic support. Some families arrange to pay a family member by pooling resources. But our healthcare system and government programs do little, and in most cases nothing, to support caregivers.
There is nothing, not one single thing, that I read in this book that did not feel as though it had been ripped out of my brain and splashed onto Kate Washington's computer screen in the mixed gall and bile of my outrage at the horrors of this "system" and the sheer overwhelm of the few who try, really try, to offer helping hands to those drowning in their pain. She clearly understands things now that aren't very fun to know about yourself...where one's limits are, how hard it is to be there, really
be there for children...and has come to terms with them. She exists in a new reality. Kate Washington is a different human being now than she was before Brad, her husband, got cancer and became a chronically ill patient.
At times, feelings of profound loneliness within the marriage have brought me to the brink of ending it. A lot of things kept me from leaving: the thought of our girls, deep senses of guilt and responsibility, the thought of how hard people (even readers of this book, I imagined) would judge me, and—a painful truth—the presentiment that a separation or divorce would just be another hard project of emotional and logistical work I’d have to do.
–and–
We’ve both had to compromise our approaches to emotional labor and mental load in attempts to build a newly equitable marriage. The results have been mixed. I still feel put upon a lot of the time; Brad still feels defensive and like he’s trying his best a lot of the time. Maybe he is. Maybe I need to lower my expectations some more. Some days are fine. But other days I don’t know how much lower my expectations can get.
I encourage anyone who has not faced the worst health crises imaginable to read this book. I encourage you to see, from the inside, how much your fellow human beings are being asked to do. Then I hope I won't need to encourage you to do something, anything, to improve life for these suffering souls, be it spending time or giving money or even haunting GoFundMe and its siblings to do more than the nothing most people do.
