When a family member becomes seriously ill or disabled, caring for that person after they’re released from the hospital most often falls to family members – regardless of whether they’re equipped physically, emotionally or financially for the job.
Kate Washington learned about the rigors of caregiving firsthand when her husband was diagnosed with lymphoma, and eventually returned home, still very ill, after a stem cell transplant. Washington is the author of the new book, “Already Toast: Caregiving and Burnout in America.” She is also dining critic for the Sacramento Bee newspaper.
Washington told Texas Standard that as the primary caregiver for her husband after his hospitalization, she struggled with the demands of the job, and with burnout.
Though she had help from family and some in-home health care providers, she says she quickly became overwhelmed. When she took an online quiz about caregiver burnout, the verdict was clear.
“The result that popped up at the end was like, you’re already toast. It’s too late. You’re already burned out,” Washington said.
In addition to basic caregiving for her husband, and parenting her children, Washington says she was responsible for managing bureaucratic tasks, like dealing with hospital and insurance paperwork, and that even having the support of her in-laws did not provide sufficient help to deal with her husband’s constant care needs.
“My husband was sent home from the hospital after his stem cell transplant, unable to see or walk unattended, and I was told that he needed somebody with him 24 hours a day,” Washington said. “And even with more than just me as the adult in the house, that was just impossible for the family to provide.”
Washington says her burnout resulted in part from “the medical system’s unquestioning assumption that there would be a family caregiver on hand to provide fairly high level care at home.”
Washington says there’s a gap between a patient’s health status that’s too good for the hospital and too sick for home that the family is expected to fill.
“The challenges of our health system, and of the lack of systemic support for unpaid family caregivers also, I think, strongly relate to that,” she said.
And what Washington calls “the care gap” will affect older people in the United States very soon. Baby Boomers who will soon need care outnumber younger people available to provide it.
Caregiving responsibilities, both personal and paid, tend to fall on women. Washington says economic disadvantage, racism and sexism impact the resources and support caregivers receive, as well as their ability to maintain employment.
“Needing to leave the workforce, losing out on future Social Security and retirement benefits – these things have lifetime effects for people who become unpaid family caregivers,” Washington said. “The effects also have a domino effect because paid caregivers and family care workers in the home are disproportionately women of color.”
Washington says the country needs a culture shift when it comes to caregiving. She says the Biden administration’s pandemic relief act is a step in the right direction, in terms of government support.
“I would love to see paid leave,” Washington said. “I would love to see tax credits and more economic support for unpaid family caregivers, and more workplace and job protections for paid care workers.”