When my husband—debilitated, immunocompromised, blind, and unable to walk—was discharged after a devastating bone marrow transplant, his doctor told me he couldn’t be left alone even for a minute. I’ll never forget my terror and outrage; I spluttered out something like, “I can’t do that! I have kids! I have to…sleep!”
I didn’t realize it then, but just by saying “I can’t,” I was setting a boundary in the face of an impossible demand. I wish I’d advocated for myself so clearly in the face of other expectations that were slightly less unreasonable than solo 24/7 care. I often let the intensity of my husband’s needs pull me into managing his care and its attendant paperwork, phone calls, and logistical demands for such long hours that I reached a stressed-out, exhausted breaking point.
From that experience, I learned how important it was to set boundaries before I got burned out. Setting limits can be one of the hardest things for dedicated caregivers to do—especially for women, as many of us are socialized to give of ourselves endlessly. Saying no or taking a break from caring can prompt guilt, and it’s tough both to find respite care and to trust others with a fragile loved one.
Training a consistent respite service, however, is an investment in future breaks that will protect your mental health and make long caregiving sustainable. In the case of my husband’s 24-hour care needs, we were fortunate that we could dip into savings and hire home attendants for a short time. Many community organizations offer respite care services (now becoming more available after COVID concerns halted them), and friends and family may also pitch in, especially if you make specific requests. However you find relief, drawing clear lines about how much you can handle is a crucial step in surviving your caregiving journey—and maybe even thriving in it.
Kate Washington is the author of Already Toast: Caregiving and Burnout In America (Beacon Press, 2021) and a speaker on the systemic challenges facing family caregivers. Her writing has appeared in The New York Times, TIME, Eater, Catapult, and many other publications. She holds a Ph.D. in Victorian literature from Stanford University and lives in Sacramento with her husband and two daughters. Connect with her at kawashington.com or on Twitter @washingtonkate
If you’re in need of respite care or services to support you in your caregiving responsibilities, here are some resources that may help: