The Secret is Out: Caregiving is Hard Work

The following represents my real thoughts while reading the new book Already Toast: Caregiving and Burnout in America, Kate Washington’s memoir about caring for her husband, who was diagnosed with a rare blood cancer:

“All caregiving relationships may bring a crossroads where the needs of the ill person become so extreme that there’s no room for self”—Yes!

“I largely stopped getting invitations… When I did socialize, I couldn’t relate to other people”—Yes!

“The emotional effects of intense caregiving… can include hypervigilance, ongoing anger or irritation, and depression or despair”—Yes!

“But if I started to cry, it seemed like I might never stop, so I stuffed those feelings down, crossed more items off my always-growing to-do list, and powered through”—Yes! Yes! Yes!

“During the long crisis, I was so overwhelmed, and eventually so burned out, that sometimes I fantasized about simply turning around while driving to the pharmacy or the grocery store, heading to the airport instead… I spent more than two years as Brad’s primary caregiver”—two YEARS?? Try measuring care in decades!

Don’t get me wrong, I loved Washington’s book—just like I loved other recent accounts of caregiving, including Arthur Kleinman’s The Soul of Care (2020), about caring for his wife through her battle with Alzheimer’s, or Abby Maslin’s Love You Hard (2019), about helping her husband recover from a traumatic brain injury incurred when he was clubbed with a baseball bat during a mugging.

My reaction was not in any way a belittling of Washington’s experience, but more of a personal release: of stress, of frustration, of isolation. Two years? Autism moms are frequently tasked with this work for the rest of our lives.

Yet when we write about our struggles, we may be dismissed by some autistic self-advocates as “martyr mommies” (if you’re not familiar with this term, just Google it and click on one of the over one million hits) and made to feel as if our exhaustion, our despair, or our desire to someday pursue the dreams we abandoned for round-the-clock caregiving all make us bad parents.

But my biggest takeaway from these caregiving memoirs? The “martyr mommy” label is not a universal response to caregiving narratives. When I searched online for reactions to Washington’s, Kleinman’s, and Maslin’s books, I found no contemptuous dismissals of “martyr wives” or “martyr husbands.” Just a lot of empathy, respect, and concern for the tens of millions of families providing difficult and unsustainable levels of care in the absence of desperately needed government and societal support. Washington provides some truly staggering statistics: more than 50 million Americans were unpaid caregivers in 2020, representing an estimated $470 billion in unpaid care; 70 percent of such caregivers have had to cut back their jobs or quit altogether.

The confluence of aging baby boomers and dramatically increasing autism cases is projected to tax this ad-hoc, family-driven system of caregiving to the breaking point. This is what the “martyr mommy” crowd, in my view, completely overlooks: as Washington argues, “A disservice to caregivers is equally a disservice to those receiving care.” It’s long past time to break out of our silos as caregivers of autistic kids, disabled spouses, and dementia-stricken parents, and unite as a broad coalition to fight for the supports and services that we all, caregivers and care recipients alike, need to thrive.