Caregiving and Burnout in America
by Kate Washington
Beacon Press, 224 pages
When Kate Washington’s husband Brad is diagnosed with a rare aggressive lymphoma, she acknowledges that this early stage of illness played to her strengths as a journalist. She accompanies him to office visits with his oncologist, paper and pen in hand, research questions at the ready. But soon her mate grows sicker. He undergoes chemotherapy and a stem cell transplant. He suffers multiple complications including vision loss from graft versus host disease, infections and relapsed cancer. As more and more of his care falls to her, “the glow (wears) off and the challenges (ramp) up”. She is forced to take on the grueling role of being a caregiver in America. In this brilliantly written, thoroughly researched, movingly raw book, Washington gives us a front row seat to everything that is wrong with this aspect of our health care system.
It should be required reading for every medical school and residency.
While Washington writes poignantly about her own experiences, she expertly trains her lens on the larger problem of caregiving in America. Fifty million Americans are currently serving as unpaid caregivers to ill or recovering family or friends; insurance does not pay for home care attendants. As is true throughout history and with other kinds of caregiving, much of this care falls largely to women. The coronavirus pandemic has accelerated female job loss due to the challenges of providing care and has highlighted the need for better family leave and caregiving policies. Seventy percent of caregivers cut back their hours at work, take leaves of absence from their jobs or leave the work force entirely. The AARP estimates unpaid family members are providing a market value of $470 billion per year.
Beyond the financial toll, caregiving extracts an emotional toll that is at times almost impossible to bear. With so much falling on her shoulders, Washington finds herself increasingly isolated. When her husband is closest to death, she finds herself delivering care almost robotically, as if bracing for the inevitable loss. Raising two young children while caring for a gravely ill spouse (referred to as “sandwich care” in her book) at times squeezes the humanity right out of her. She develops compassion fatigue, a desensitization to suffering well-documented among health care workers. The title of the book comes from an online quiz she takes on caregiver burnout. She had spent the morning at a doctor’s visit with her husband. Weeping and worn, she bristles when the oncologist tells her to take better care of herself: not to nourish herself as a human being, but so she could take better care of her husband. The interaction leaves her invisible and bereft. When she finishes the online quiz, she gets the breezy result, “You’re already toast!”
In updating family and friends, Washington paints Brad’s progress with a falsely rosy brush, pushing those who might help a little farther away. She and her husband sleep separately for weeks and months at a time due to hospitalizations, pain, coughing and vigilance against the coronavirus. The gulf between her and her husband is as wide as that between her and the rest of the world. Well-meaning colleagues and kin inquire how Brad is doing before asking about her, if they do at all. Care-giving can be such a lonely row to hoe.
As Brad recovers, both he and Washington bear scars. Brad’s are obvious. Washington’s are less so. She describes a kind of post-traumatic stress in caregivers just from witnessing a loved one endure a horrific illness. She herself suffers ongoing depression as well as a hypervigilance, seeing pathology in every sniffle or sneeze and startling out of proportion to common household beeps like a load of laundry finishing. I myself remember mining my conversations with my son who suffered a traumatic brain injury looking for signs of anxiety or depression. As a pediatrician I see a similar phenomenon in parents whose children were born prematurely or survived cancer. In the so-called vulnerable child syndrome, parents view simple symptoms as potential harbingers of another catastrophic disease.
As difficult as this story is to hear at times, it is a necessary one. Washington wrote this book in order to bring our attention to this neglected aspect of health care and what it says about us as people, and we cannot turn away. “If society wants us to keep caring for others, it’s going to have to show a little more care for us,” she concludes.