Caring for ailing parents takes its toll
Sunday. A traditional day of rest. But for many family caregivers such as myself, rest is a concept out of reach.
For decades, I’ve devoted innumerable Sundays to “care work”: cleaning, grocery-shopping, visiting relatives in hospitals and nursing homes. One recent Sunday, care for self and family collided as I assembled a shower chair for my 78-year-old father, completed a 17page questionnaire for my younger sister’s Social Security disability benefits and visited urgent care for a finger I’d crushed while hoisting my father’s walker into a taxi after his liver biopsy.
My younger self hid this work, or apologized to professors and employers for calamities I believed afflicted only my family. But I’ve since recognized that the combination of mounting family needs and shortfalls in support for caregivers harms many American families, in particular those from racial- and ethnic-minority backgrounds — and especially the women in those families, who disproportionately shoulder the care.
Strong family infrastructure makes possible productivity, creativity and a thriving economy. But that infrastructure has buckled as U.S. policymakers have neglected the emotional, physical and financial health of caregivers.
The Biden administration’s American Jobs Plan — which proposes a one-time, $400 billion infusion to expand home- and community-based health care — attempts to address this problem. It falls short of the investment needed to remedy America’s care crisis longterm; for that, among many other reforms, we need a substantial expansion of Medicare benefits for inhome and nursing-home care. But it’s an important first step in alleviating inequalities in family caregiving.
It’s the kind of assistance I long could have used.
As a teenager, I juggled schoolwork with helping my mother, who was dying of cancer. In 2005, at age 25, I became my father’s primary caregiver when he was diagnosed with advanced lung cancer. Manual jobs in mines, ships and asbestos-laden buildings had eroded his health. A lifetime of adversity — including parents who abused alcohol and him — shadowed him into old age and exposed him to toxic stress. His cancer morphed into a managed chronic illness over 16 years, through which he endured debilitating fatigue, perpetual anxiety, a chest-racking cough and shortness of breath.
As a Chilean immigrant and native Spanish speaker, Dad needed my assistance navigating our fragmented health-care system. I accompanied him to appointments, selected his oncologist, coordinated his care.
All those years of unpaid work trail me in the zero years entered into my Social Security benefit calculations, reducing my lifetime benefit and delaying my own retirement. My student loans ballooned as an expensive two-year graduate program stretched into five. My physical health also suffered. I was diagnosed with an autoimmune condition as my father underwent radiation and chemotherapy.
In my father’s final weeks, my youngest sister flew in to share the daunting task of helping our last parent die at home. We worked our full-time jobs remotely. I Zoomtaught a class while Dad declined. The social boundaries between father and daughters collapsed as we intimately cared for Dad’s body: washing him, helping his penis into the urinal, lifting him to alleviate pressure on a bedsore when he could no longer stand on his own. We were soon covered in bruises from this physical work. He thankfully welcomed our help without shame.
We had to master pain management on the fly and slept little as we moved into Dad’s room to monitor him 24/7. His final gift to us was a swift death. Had he lasted longer,
we faced the prospect of caring for him through seizures, diapers and fearful hallucinations.
A week after he died, I received notice that my employer was launching a paid family leave program to cover up to 70% of employees’ wages for eight weeks — too late for me, but available for the future. I got five days of bereavement leave.
Folded into my mourning is sadness that respite was possible only with my father’s death. I’m relieved my sisters and I won’t have to help another parent die. But I know this is only a pause before the next storm, however far off, as siblings, children, significant others, in-laws and we ourselves inevitably require care.
Nearly two weeks after Dad died, I enjoyed a restful Sunday. I slept in. I dismantled the infrastructure from his dying: taking apart the shower chair, tossing old Jell-O from the refrigerator — the last food he ate. Sad work, but this wrapping up of his modest affairs was manageable compared with the never-ending stream of care.
Whenever I picked up Dad’s food at Chelsea Papaya, the silver-haired cashier mentioned how fortunate Dad was to have a devoted daughter: “I have sons. They never call me.” He was right about Dad’s fortune. But to care for our families, we need to do more than rely on the devalued paid and unpaid labor of women. It’s time to pass President Biden’s proposed home-care expansion and to invest in the fortunes of this country’s tired daughters, too.