50 Million Americans Are Unpaid Caregivers. We Need Help.
Biden must make good on his promise to support families with sick loved ones.
This is an excerpt from an article written by Kate Washington at the New York Times. Click here to read the full story.
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.
This is an excerpt from an article written by Kate Washington at the New York Times. Click here to read the full story.