In August 2021, when my 62-year-old mother said hello on FaceTime, she was holding the side of her jaw, grimacing. She was in anguish, but kept repeating, “I’m OK, I’m OK.”
At the time, my mom was living in Bellingham, Washington, two years into providing unpaid live-in care for her father-in-law (my step-grandfather, who I reluctantly call “Grandpa,” despite not having much of a relationship with him). He was suffering from debilitating cancer and heart disease. But providing home care to him came at a price to my mom’s health, safety, financial security, and family. The job was all-consuming: She quit painting and gardening, which she loved, and she grew isolated from her own children and grandkids during the COVID-19 pandemic.
My mom’s experience is not unique. She is among the roughly one in five Americans who provides care to an adult or child with special needs. Of the estimated 48 million people caring for adults, about 41.8 million provide unpaid care, just like my mother. While the work of unpaid caregivers is deeply undervalued, paid home care workers struggle too. Roughly 2 million people make up the home care workforce, which is 86% women, 60% people of color, and 14% immigrants. According to the National Domestic Workers Alliance, nearly 20% of these workers live in poverty, with an average hourly wage of $12.12 and annual earnings of $17,200.
In 2019, Grandpa had asked for my mother’s help in exchange for room and board. The offer came just when she was on the brink of homelessness. But keeping up with the demands of caring for Grandpa meant she put her own health needs last. She hadn’t seen a dentist in years, and her jaw pain traced back to an abscessed tooth that eventually would have to be pulled, along with three others. It was the first in a series of health issues that would eventually land her in the hospital.
In addition, the home environment began to feel unsafe for my mother. Shady visitors would show up at the house to do odd jobs and steal stuff. Grandpa also hoarded newspapers, and my mother worried about the potential fire hazard the stacks could create.
My mom’s needs—for her health, finances, and personal happiness—have always taken a back seat. Raised in a strict Catholic family, she grew up believing women were supposed to care for others, whether blood relatives or not, and not pursue careers or dreams. When doctors found a tumor in my father’s brain, my mom, then in her early 20s, set up a hospital bed in our dining room and tended to him for five years until he died. She later remarried, but her second husband stole her life insurance payouts, used them for drugs, and turned abusive. She got a restraining order, which he repeatedly broke. After selling our house, we spent three years moving around—living with family, in hotels and rentals, and in a tent—until my stepdad died and my mom felt safe enough to settle down and purchase a home.
In her 40s, she returned to unpaid caregiving, first for her father, who had a heart attack and died six months later, and then for the last four years of her mother’s life, and her mother had Alzheimer’s. Then, my mom’s then-boyfriend revealed he had cancer, so she cared for him until he, too, died. By her 50s, my mom was living below the federal poverty line, had lost her house, and had begun staying with relatives. She cared for grandkids and worked short stints as a housekeeper at hotels and nursing homes. She survived on a minimal government annuity check, the bulk of which went toward credit card debt and storage unit fees. In 2019, when relatives could no longer house her, she thought about living in her car, until she lost that too. That’s when her late husband’s father called.
My mom overheard Grandpa tell people he rescued her from homelessness by offering her room and board. While taking her in was a kind gesture, my mother was providing him with round-the-clock care—a job that paid caregivers in the state of Washington receive a living wage for. According to ZipRecruiter, paid live-in caregivers in Washington make more than the national average, which is about $17–$18 an hour, $35,360–$37,440 annually, and that the room provided is required to be clean and habitable. Every night, my mom tripped through the sea of clutter just to reach her bed. She kept her belongings in plastic storage bins in the bathtub.
The cost of caregiving can be devastating, especially for those with fewer resources. According to a 2021 study, 42% of unpaid caregivers have experienced job loss or reduced hours. In June 2020, when Colorado nursing student April Kimbrough learned her 23-year-old son Da’Corey was diagnosed with a rare kidney cancer and had six months to live, she faced a terrible choice: Keep her job at a hospice call center or accompany her son to his treatments.
No mother should have to ask herself, “Do I go to work, or do I sit by my son’s side?” Kimbrough said. Her employer didn’t offer paid family leave and denied her requests to work remotely when her son needed chemotherapy. Ultimately, she lost her job and ended up living in her car. Kimbrough shared her story as part of the campaign to pass Proposition 118, which, starting in January 2023, will mandate paid family and medical leave in Colorado. But it’s a benefit that came too late for Kimbrough. In May 2022, her son died.
“The system we currently rely on is built on the backs of the unpaid support of family caregivers. … [They are] the invisible workforce that the government has just relied on,” says Nicole Jorwic, the chief of advocacy and campaigns at Caring Across Generations, a caregiver advocacy group. Caregivers contributed an estimated $470 billion in economic value in 2017 but face rising financial strain. The 2020 AARP study found that of the 1,392 unpaid caregivers sampled, 28% had stopped saving, 3% filed for bankruptcy, and 2% were evicted or had their homes foreclosed upon.
Meanwhile, only a small portion of caregivers qualify for public support through the recipient’s health insurance program. Medicaid programs offer Home and Community Based Services, which provide home health care, medical equipment, and physical therapy, as well as case management, home meal deliveries, transportation, and adult day care—necessary services that help people stay out of nursing homes. If an elderly recipient qualifies for these services, their benefits can be allocated toward compensation for their caregiver. While other non-Medicaid programs offer limited and short-term home care services, Medicaid is the largest funder and the principal way family caregivers can get paid.
But the national average wage for these caregivers is $12 an hour. Eligibility for Medicaid services varies state to state, is income-based, and has income caps so low—$841 month in some states—they hover under the national poverty level. If over 41.8 million people are unpaid adult family caregivers, and only 3.7 million elderly recipients receive HCBS through Medicaid, there’s a good chance many people are not getting the benefits they qualify for, either because they aren’t aware that financial help exists, because the process is too daunting, or because there’s a national waitlist that averages more than three years long.
Barriers to care like these mean many family members step in, receiving no compensation in return. In my mother’s case, Grandpa didn’t qualify for Medicaid, which by default meant she didn’t qualify for payment as his caregiver, because his income was too high. He received a pension and U.S. Department of Veterans Affairs benefits, and had assets, including a house and three cars. She also didn’t qualify to become his caregiver through the VA, because his medical conditions were not a direct result of his time in the service. Lastly, she missed out on accruing Social Security benefits that would have been available to her at age 62 had she been working an on-the-books job.
Meanwhile, my mother grew increasingly scared of the people loitering in and around the house. She installed a lock on her bedroom door to protect her belongings. A paid worker would likely have had somewhere to turn, an agency supervisor, possibly a social worker, but my mother had no advocate, and even a visiting social worker never pulled her aside, out of Grandpa’s earshot, to see if she was OK, because she wasn’t the patient or the client.
Christina Irving, client services director at the Family Caregiver Alliance, says caregivers aren’t on the radar of social workers and case managers, but they should be. “If caregivers aren’t given a voice in care planning or conversations about health, then we’re missing a lot,” she says.
Today, caregivers are able to obtain support through organizations such as the Family Caregiver Alliance, the National Family Caregiver Support Program, and online support groups, such as The Caregiver Space, which has a 7,900-member Facebook group. Jorwic notes that when caregivers share experiences, momentum builds, and legislators are forced to listen. Unpaid family caregivers start to see the work they do as worthy of payment. In cases where the care recipient doesn’t qualify for Medicaid, Irving suggests that families draft Personal Care Agreements so family caregivers’ financial health and well-being are better maintained.
For years, advocacy groups have been fighting systemic injustices within what’s called the “care infrastructure.” Organizations such as the National Domestic Workers Alliance, Caring Across Generations, and MomsRising want to see lasting and substantial changes: expanding Medicaid Home and Community Based Services, Paid Family and Medical Leave, affordable and quality child care, and wage increases for paid care workers, who are often also providing unpaid care for their own families. A robust movement has been forming around the #CareCantWait coalition.
Recently, California lawmakers moved to nearly eliminate monthly income and asset limits by July 1, 2022, which means more people will qualify for home- and community-based care. “Eliminating restrictive financial requirements,” Jorwic says, will prevent older adults and people with disabilities from having to “spend down all of their personal assets before they can get the services they need, or remain in a state of poverty to keep them.” Jorwic adds that this is something advocates will be pushing for on a federal level. “Everyone will need these supports, or will know someone who does.”
In December 2021, I received a text from my sister that my mother had been admitted to the hospital. She had difficulty breathing and acute anemia from stomach ulcers. The doctor told her that had her blood cell count been much lower, she could have had a heart attack or a stroke, both of which are considered growing risk factors among family caregivers during the pandemic.
She told her father-in-law’s extended family that she was no longer able to take care of him and moved into my younger brother’s one-bedroom cabin in the woods to recover after her hospitalization, which was hours away from her doctors and other necessary services.
The change of scenery helped, however. Living in a wooded area with deer, coyotes, and foxes inspired her to return to landscape painting, the dark circles under her eyes have faded, and she’s paying more attention to her own health.
She now says she will never return to caregiving, however, and her housing situation remains precarious.
I teased her over FaceTime that maybe she should start online dating now that she had access to Wi-Fi, and maybe even fall in love (but only with someone in supremely good health). She shook her head no. She told me that all she wants to do is paint and garden and, for the first time in her life, think about her own needs.
“I’m happy where I’m at,” she said, smiling. “I’m ready to fall in love with myself.”
This story was supported by the journalism nonprofit the Economic Hardship Reporting Project.
Julie Poole is a writer living in Austin, Texas. She received a BA from Columbia University, an MFA from the University of Texas, and will (fingers crossed) start journalism school at UT in the fall.