After Angelena Taylor’s father survived a stroke in late 2015, she snapped into crisis mode.
A month into a master’s program for educational psychology, Taylor, now 33, took unpaid leave from her job. She didn’t want to send her dad to a facility, and his private health insurance didn’t cover home-care services, like help with bathing and meals, she said. So Taylor took on the primary responsibility for his care herself, managing everything from appointments to medication, spelled for half-day breaks by a professional home-care worker for up to $400 a week out of pocket.
Now, in the pandemic, that outside assistance has no longer been feasible. While Taylor managed to graduate on schedule, her caregiving and remote teaching work have kept her from completing one final step to launch her career: studying for board examinations to become a licensed clinician.
“I have all the materials I need,” said Taylor, who lives in Detroit. “I just need time to just center myself, focus and not have to put so much on being available as a care provider.”
Amid a devastating pandemic, and at an inflection point on systemic racism, caregiving in the United States is emerging as a quiet but massive driver of inequity for women — and for women of color like Taylor in particular. Women of color are more likely to be underpaid professional caregivers and unpaid family ones, and Black and Latino people become caregivers nearly 10 years earlier, on average, than their White peers, a 2015 AARP report found. They may take on such roles earlier as relatives experience higher burdens of chronic injury, illness and lower life expectancies as a result of structural racism, experts say.
But women not only give the majority of care in the United States — they also receive it. With pandemic death tolls in nursing and assisted-living facilities laying bare significant deficiencies in the country’s long-term care infrastructure, some experts believe the current model is unsustainable.
Americans have a “fantasized notion of what it will look like or mean to age in this country,” said Josephine Kalipeni, deputy director of Family Values at Work, an advocacy group for working caregivers.
Medicare, the insurer that typically covers adults over age 65, doesn’t pay for home care. Long-term care policies on the private market typically carry steep premiums, and many applicants are rejected. As a result, Medicaid — a state and federal program that provides health insurance to more than 64 million people in the United States — is “the only game in town when it comes to providing those [home and community-based care] services,” said Nicole Jorwic, senior director of public policy at the Arc of the United States, an organization serving people with intellectual and developmental disabilities.
But even then, Medicaid comes with strict eligibility requirements and a more than 800,000-people-deep wait list for at-home services. “You can do everything right, and this is still a collision headed straight your way,” Kalipeni said. “We are setting up generations upon generations to age into poverty.”
The issue has captured the attention of President Joe Biden, whose proposed infrastructure plan allocates $400 billion for home and community-based services, including boosting wages for care workers. In the meantime, a handful of states are spearheading or considering initiatives that could shape the national conversation — and potentially help women like Taylor. Hawaii launched a pilot program in 2018 that helps family caregivers cover costs for elders. Washington state, meanwhile, passed America’s first universal social insurance program in 2019, financed through worker contributions.
“States are essentially the petri dishes,” Kalipeni said. The stakes of such experiments are high.
A heavy cost
The minute that Christina Keys left the sales job she loved in February 2017, she knew any semblance of structure she’d had would be gone, too.
Keys, 52, who lives in Washington state, had been caring for her mother since a hemorrhagic stroke landed her in the ICU in 2013. The doctors estimated that she had a 1% chance of survival past 30 days, but she held on. Nearly four years later, Keys was burned out. One month into the year, she had depleted her time off shuttling her mom to appointments and hospital visits. Her own health was deteriorating from stress and lack of sleep, she said.
“I didn’t want to leave,” Keys said. “At my job, I knew how to reach my goals, how to be successful. I knew that if I reached certain benchmarks, I would be able to ring the gong.” But there are no clear benchmarks, or training, as a caregiver — especially because her mom’s health declines each day, Keys said.
Back in 2013 when Keys took over her mother’s finances, she felt a surge of relief upon seeing $300,000 between her own 401(k) combined with her mom’s retirement funds from decades of work as an aerospace manufacturing engineer. But that money didn’t go far enough in Washington, where the annual median cost for a home health aide exceeds $70,000. Their savings were gone within two years, Keys said.
Many older Americans must pay for long-term care out of pocket until they eventually qualify for Medicaid, Jorwic explained.
Keys now juggles several part-time jobs that can accommodate her schedule, earning barely $20,000 annually — a far cry from the $80,000 she’d been making before. “Women who are pushed out of the workforce for elder care reasons [are often] at the height of their careers, when they’re at the highest earning power,” said Janet Kim, communications director at Caring Across Generations, a national campaign aimed at reshaping policy and culture to transform caregiving.
According to a MetLife study published in 2011, women lose an estimated $142,000 in lifetime wages by leaving the workforce early due to caregiving responsibilities — a total loss that reaches nearly $324,000 when accounting for Social Security and pension benefits. In contrast, men lose an estimated $89,000 in wages and about $284,000 overall.
Washington is among the states that have designed programs to relieve such pressures. Nearly a decade ago, the legislature foresaw a budget strain: The number of people 85 and older was projected to almost double over 20 years, said Ben Veghte, director of the WA Cares Fund for the Washington State Department of Social and Health Services. Washington passed the nation’s first universal social insurance program for long-term supports and services in 2019.
The money from the program, which will be funded through a worker tax contribution, can only be used for one’s own needs. A key goal is emphasizing autonomy for older adults so they can tailor care according to their preferences.
Workers will start contributing next year and will be able to access benefits in 2025, although there are gaps to be resolved: The program would cover some people with disabilities, but only those who have worked enough to pay in, said Jorwic. The high unemployment rate among people with disabilities means most would be ineligible.
But the fund marks a starting point, Veghte said. Pumping revenue into long-term care infrastructure sends signals of future demand and job growth, which could spur more robust training, compensation and professional development to reduce turnover and make home care a more sustainable career path. Although home health and personal aides are among the fastest-growing occupations, workers only earn a national median of $27,000 annually, according to the Bureau of Labor Statistics.
Although the program won’t help her mom, Keys says she would pay into the fund, adding that something like this might have helped her stay in her career and could aid others.
Until then, she has been scouring for an employer that will see the skills she’s gained while caregiving as assets, not liabilities. Multitasking, negotiating and finding solutions under pressure are qualities she now highlights on her résumé, but during one recent application process, the interviewer eventually suggested that her availability wouldn’t align with demands of the role.
Keys never imagined she’d be in this position. She’d followed precisely what her parents taught her to “chase that American dream,” she said.
“I don’t know if I could have done anything different,” she added. She worries about the prospects of millennial women, who face the worst economic odds in history and are caring for relatives without having had time — like she did — to build any safety net at all.
“I definitely know what’s coming for millennials,” Keys said. “I don’t know how they’re going to do it.”
Focus on caregivers
Poki’i Balaz, 38, begins and ends her day with caregiving — inside and outside her home. Balaz, who identifies as Native Hawaiian, applies her geriatrics and brain health expertise as a nursing director and memory care clinician on Oahu, along with tending to her father, a veteran who has Alzheimer’s disease.
Although Balaz was on track to apply for medical school, with dreams of becoming a plastic surgeon, she changed course when her father was diagnosed with Alzheimer’s in 2011. She moved from California back to Hawaii: Speaking with medical students made it clear the time demands wouldn’t be feasible with her caregiving duties.
“My parents took care of me my entire life, so it was time for me to come home to do the same,” Balaz said.
After some years working on and off, Balaz decided to pursue a doctorate of nursing practice. She now juggles jobs that provide flexibility and splits at-home care responsibilities among her boyfriend, nephew, mother and a home-care worker from Veterans Affairs.
Kupuna, or elders, “are the keepers of all of our knowledge, of our history … our morals, our values, our language, the stories,” she said. To not treat them with the same reverence at the end of their lives “would just be against everything that our culture stands for.”
Hawaii’s population is older relative to many other U.S. states, said Ian Ross, public policy and advocacy manager of the Aloha Chapter of the Alzheimer’s Association. The state implemented the Kupuna Caregivers program, which is administered through its Executive Office on Aging, in 2018.
Unlike Washington’s program, Hawaii’s pilot focuses on caregivers rather than those receiving it. (Another program, signed into law in 2012, focuses on financial support for care recipients.) The goal of this initiative is to provide respite care so that caregivers can stay gainfully employed and avoid burnout, Ross said. Those who qualify can access $270 weekly to put toward home care or adult day care for those they are caring for.
The program is still nascent, and fewer than 200 caregivers are currently enrolled. People must work 30 hours weekly outside the home to qualify, which can create a Catch-22: They need respite care to leave relatives at home and go to work, yet must keep a job to afford home care or become eligible. Nearly 6 out of 10 program applicants reported having to reduce hours within the last six months, almost half were sole caregivers and three out of four were women, according to applicant survey data provided by Ross.
The pandemic has further complicated eligibility, as many lost jobs: As of March, Hawaii was the state with the highest unemployment rate nationwide.
But even with limitations, experts point to the impacts such a program could have for gender, racial and economic equity — both in terms of giving care and getting it. “The key thing that people often forget is that women live much longer than men,” which leads to a greater need for long-term care, Ross said. Research also shows that Black women are aging alone, without family members, twice as often as White women.
Experts argue that systems in the United States don’t have to work this way, and that this moment is ripe for change. Wisconsin and Maine are in the process of developing their own legislation that includes provisions for caregivers, while California, Michigan and Minnesota are working on legislation to make caregiving more affordable.
In a moment when Americans are working to address the racial wealth gap, some advocates see establishing care solutions as ground zero for progress. “Without these supports … we are setting Black millennial women up to have to leave the workforce, to discontinue their educations, to change career paths, to delay having their own families and investing in their own futures,” Kalipeni said.
Women like Taylor, and the loved ones they care for, say they can’t afford to wait. Taylor has postponed milestones like paying off college debt, living in new places and buying a home. Some days, she said, it feels like she’s lost her identity outside of the care she provides and the work she does.
“Sometimes I feel like my life is at a standstill, like something is missing,” she said. “I never really got the chance to step out and have my own space.”
She has always imagined getting married and building a family of her own. “It puts everything in a different perspective now,” she said, “because it’s like, how would I be able to navigate that?”
This story was supported by the nonprofit Economic Hardship Reporting Project.