Five years ago I stood in a tiny hospital room wondering how I was going to care for the man I loved most without succumbing to despair.
For four months, my husband, Brad, had been recovering from a stem-cell transplant that saved his life from aggressive lymphoma. The hospital administration said he must go home, but he needed a level of support that, I thought, only a hospital could provide.
His homecoming ought to have been cause for celebration. But I felt anything but joyful. The night before his discharge, unable to sleep, I felt so trapped and terrified that I called a suicide hotline, even though I wasn’t really sure I wanted to harm myself. I was so desperate I needed to hear a compassionate human voice, and I couldn’t think of anywhere else to turn.
Though isolated, I was far from alone: according to a 2020 survey by AARP, more than 50 million Americans now serve as unpaid caregivers for adult family members or friends. That number will rise as the baby boomers age. That’s the bad news. The good news is that with the Biden administration committed to a bold, integrated vision of care, we have a once-in-a-generation opportunity.
The plight of family caregivers, who often compromise work, finances, friendships and their own health to support their ill or disabled loved ones, has long been overlooked in U.S. policy. While some states offer programs to help caregivers, they can be inadequate and hard to navigate. The coronavirus pandemic has revealed many problems in our health system, and few more starkly than the way it both undervalues and relies on caregivers.
I became painfully familiar with caregiving’s challenges during Brad’s months of chemo in 2015, but it was his 2016 stem-cell transplant — a last-ditch treatment for relapsed cancer — that showed me just how broken our system is. When he was discharged, he was immunocompromised, blind, too weak to walk unassisted, and unable to eat more than half his calories.
“He’ll need attendance 24 hours a day,” his oncologist told me. I stared, panic rising.
“How am I supposed to do that? We have two kids,” I said. Even meeting our family’s most basic needs would be impossible.
“Well, usually family steps in and it works out fine,” the doctor replied, waving away my concerns. Our family had been extremely supportive but couldn’t drop everything indefinitely. A nurse suggested organizing shifts of friends, but my friends, like me, were working parents.
Besides, caring for Brad wasn’t simply watching him. He came home with 35 medications that had to be administered on a mind-boggling schedule, as well intravenous nutrition that I had to hook up, a complex procedure that I learned to perform in a hasty training session from a nurse. He needed blood sugar tests and assistance with toileting, showering and other intimate acts at which even close friends might well balk.
Insurance does not cover home attendants even when medically necessary. Our benefits did pay for skilled nursing visits and home health aides for assistance with showering twice a week, but for the 24-hour care the doctor prescribed, we had to pay out of pocket. The summer after Brad came home, we spent more than $21,000 on in-home care, dipping into savings and an inheritance from my mother to do so. We were very fortunate to have those resources; for many families, it would be out of reach.
It’s often noted that the United States is alone among rich nations in not providing maternity leave; support for child care is likewise abysmal. Similarly — but often more invisibly — we leave millions of caregivers with little or no support in managing the financial, logistical and emotional difficulties of helping ailing parents, spouses and children.
The Biden-Harris campaign made an ambitious caregiving plan a key plank of its platform. Early signs from the new administration are promising. Mr. Biden’s $1.9 trillion coronavirus emergency relief package includes measures benefiting caregivers: extending stimulus payments to cover previously overlooked adult dependents, tax credits, and paid family and medical leave. Some of these benefits would help family caregivers of all kinds; others specifically aid those tending people with Covid-19.
Although pandemic relief is the most urgent priority, change must not stop there. The plan Mr. Biden rolled out during the campaign proposed an integrated approach to supporting child care, care for older people, paid care work, and family caregivers. Among other measures, it floated a $5,000 tax credit for unpaid caregivers, Social Security credits for those who must leave their jobs to provide care, and 12 weeks of guaranteed paid family leave.
The plan would also offer wider access to home- and community-based long-term care and support services. Gaps in Medicaid coverage for these services has resulted in long waiting lists and made it harder for people to receive needed care at home.
Such changes would clearly benefit both family caregivers and paid workers, who are disproportionately women of color. With few job protections, in-home workers have long had difficulty finding stable, well-paid work, a plight worsened by Covid-19. The Biden policy team has argued that its plan would create up to three million jobs in care work and education, benefiting populations hit hard by pandemic job losses.
The changes wouldn’t help just caregivers like me; what’s good for caregivers also benefits those who need assistance. Expanding home care can keep frail elderly people out of nursing homes, the drawbacks of which have been painfully exposed by the pandemic. Easing financial strains and burnout for caregivers can mean better, more compassionate treatment, which in turn can improve quality of life and outcomes for our most vulnerable citizens.
Even though I had support systems and family to help, and we could afford supplemental care, my husband’s long medical ordeal was almost unbearably stressful. Supporting a catastrophically ill person will never be easy — but in the United States today, it’s far harder than it needs to be. Our system largely abandons those with less privilege than I have to struggle alone caring for those we love most. The result for many is burnout, bankruptcy and profound suffering.
Though my husband remains chronically ill, he has recovered his vision and his independence. There are millions more out there now as desperate as I felt five years ago, crying for relief. A Biden administration primed for change, with the slimmest of Democratic Senate majorities, means there’s a real opportunity to reform and mend our broken systems of care. If we are to have the caring society we all deserve, caregivers and recipients alike, we must not lose that chance.
Kate Washington (@washingtonkate) is the author of the forthcoming “Already Toast: Caregiving and Burnout in America.”
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