WASHINGTON, D.C. — Maurice White, 75, and Renee DeVigne, 68, are among the millions of family caregivers in the U.S. whose lives center around caring for aging loved ones. The Washington, D.C. couple has gone to extraordinary lengths, into their own retirement years, to take care of family elders.
They've cared for White's mother Evelyn White in their home for 25 years. The retired teacher turned 104 in October. She's one of the last of their elders they will care for.
"There have been 12," said DeVigne. "His father, my mother, and other aunts, uncles, grandparents."
The couple also helps care for DeVigne's dad, who lives in a memory care facility.
While people are living longer, they're also having fewer children, according to the United Nations. In the U.S., this population shift means caring for parents, grandparents, and other relatives could become even more challenging with fewer family members to pitch in. The caregiving industry is already experiencing a workforce shortage. The decline in the birth rate may reshape how we think about caring for the oldest Americans.
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Multigenerational living
Maurice White and DeVigne say they know many families can't keep loved ones at home for various reasons. Some are juggling the demands of jobs and parenthood. White retired early — 20 years ago — and the couple doesn't have children. Some families may not have enough space in their homes. White built an apartment in their basement for his mother. He says their culture as a Black family plays an important role in their decision to provide care at home.
"I do think that African-American families have more of a tendency to do that, many because of money, but more just because of the family connection," he said. "This is my mom. We put her to bed every night and say prayers with her."
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According to Pew Research Center, about 26% of Black and Hispanic Americans, and 24% of Asian Americans lived in multigenerational households compared to 13% of white Americans in 2021.
And the Bureau of Labor Statistics says from 2021-2022, 45% of Black elder care providers were taking care of a parent. For Hispanics or Latinos, that same figure was about half.
Ai-jen Poo is Executive Director of Caring Across Generations and President of the National Domestic Workers Alliance. She says the U.S. is nearing a tipping point with families overwhelmed by caregiving demands.
"We've kind of taken this model of care where you're on your own and you're expected to shoulder and manage it as an individual or as families alone," she said. "We've taken this model to its very limit and we're all at the edge of the cliff looking down and wondering what to do next."
White and DeVigne took care of his mother Evelyn without assistance until she started needing more support a couple of years ago. Then, they hired home health aide Selisa Sutton.
"I'm like family. I call her my auntie," said Sutton, 52.
Evelyn was out for mile-long walks.
"She was bathing herself, brushing her teeth, getting herself dressed, she'd ride her bike, we'd go to the senior citizen center everyday!"
But this summer, everything changed. Evelyn had a stroke. She was in the hospital for nine days and then started short-term rehab at Knollwood Life Plan Community, a senior living community in Washington, D.C.
Workforce shortages and rising cost of care
Knollwood is among many care facilities that have had to navigate the strain of workforce shortages. Beverly Morgan, a registered nurse and director of Sales and Marketing at the center says she's concerned about these shortages because it's projected to grow worse nationally.
"The shortage was an issue 10 years before the pandemic. Then, you had this horrific pandemic that took a large portion of people out of the system," she said.
The Trump Administration's immigration policies are also expected to deepen the strain. Immigrants make up more than a fourth of professional direct long-term care workers.
The median cost of a home health aide for 40 hours a week was more than $68,000 a year in 2023, according to KFF, an independent health policy research, polling and news organization headquartered in the D.C. area. The median annual price tag for a private bedroom in assisted living exceeded $64,000. Assisted living support at Knollwood starts at about $89,000 a year. Families typically must pay out-of-pocket or use long-term care insurance for both types of care.
Congress has made cuts to Medicaid, as more than 700,000 aging adults, people with disabilities, and those with chronic conditions are on waitlists to receive Medicaid home and community-based care in dozens of states.
"If we're living an average of 20 years longer … we've got to re-imagine a system of care and a culture of caregiving," said Poo.
Human connection is key
Maurice White and Renee DeVigne's advice for people who want to care for loved ones at home is to learn as much as possible about their elders' needs and resources.
"Research, research, research," said White.
"You try to do your due diligence to gather your facts and learn and ask questions," said DeVigne. "I try to surround myself with people who know more than I do."
Over the years, the couple has done workshops on spirituality and self-care. They say they've also incorporated meditation and other techniques to promote mental and emotional well being.
DeVigne says the family's prayers were answered. After weeks of rehab, Evelyn White returned home.
"We're proud of you, Mom, because you've worked very hard," said DeVigne. "It's hard to do rehab in the best of times, but at 104, you're an inspiration to us all."
Evelyn says she's grateful for her life, and all the care and love she gets from her son and daughter-in-law. They say, over all these years, she has passed down to them her philosophy on life.
"Being nice to everyone and being appreciative of the things that are done for you," said White.
Since returning home, her family says she has gotten positive reports from her doctors. White is rebuilding some strength in physical and occupational therapy, and she's back at the senior center.
The family is reflecting on their experience at Knollwood in the facility-care system. It has given them new perspective and made them think differently about the future.
White and DeVigne say they're still figuring out what type of care and care setting they want for themselves. The one thing they know they need and want is human connection.
"I've always said I'd stay in my house until the day I died," said White. "But it dawned on me, you can be isolated all the time. I think that's one of the things that's helped mom, she has never been isolated. We keep her going and it made a difference. It kept her alive!"
The couple's hope is that the country can solve the caregiving crisis and be ready for shifts in the population. They imagine a day when families can afford care, the professional workforce is valued with better wages, and elders get the care they deserve.
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