In early 2020, I wrote about the struggles of the “sandwich generation,” demographers’ label for those who are caring for children and aging relatives at the same time. The sandwich generation parents I spoke to in that prepandemic moment talked about the emotional and financial toll of that level of caregiving responsibility. Some had to leave full-time employment or change jobs because caring for a parent with failing health and children with their own abundant needs took too much time and required too much flexibility.
More than two years later, I wanted to check back in on this group (which, according to Pew Research Center, includes more than half of 40-somethings). As I’ve written regularly, the difficulties facing both parents and child care workers can be interconnected: The child care industry doesn’t pay workers enough to prevent a lot of turnover, many centers are short-staffed, parents are already paying more for child care than they are for housing in many states and inflation is making everything worse.
Elder care has similar challenges. The AARP Public Policy Institute, which tracks nursing home staffing shortages by state, reports that an average of 25.1 percent of nursing homes don’t have enough direct care workers. In some states, it’s dire — over 60 percent of nursing homes in Maine, Minnesota and Wyoming are short on staff. Nursing home work became a particularly dangerous job during the pandemic: As Scientific American reported last year, “Workers in skilled nursing facilities had at least 80 deaths per 100,000 full-time employees” in 2020.
Wages in the direct care field, which includes caregivers at private residences, assisted living centers and nursing homes, are “are persistently and notoriously low,” according to PHI, an advocacy group that researches elder care and disability issues. PHI noted, in a report last year, that these workers “are predominantly women, people of color and immigrants,” and that “median annual earnings are just $20,200,” due in part to “high rates of part-time employment” — and how do you support a family on that?
Considering the toll Covid took on residents of nursing homes, there’s additional incentive for adult children to keep their parents living with them at home as long as possible, and that can require emotional and financial compromises. Women are more likely to be doing this care — according to the Family Caregiver Alliance, as of 2015, “The average caregiver is a 49-year-old woman who works outside the home and provides 20 hours per week of unpaid care to her mother.”
Rebecca Jones’s experience is emblematic of the sandwich generation pandemic crunch. Her mother was diagnosed with early-onset dementia in 2014, which she called “a cruel and relentless illness.” Still, “we really dedicated ourselves to trying to keep her home as long as possible,” she told me. Her family relied on day programs in New England, where they live, to keep her mother occupied. One of her mother’s programs shut down because of a lack of funding before Covid hit. Jones scrambled to find another program, only for it to shut down along with everything else in March 2020.
Jones was working as a paralegal at that time, and her husband is a mechanical insulator. In 2020, one of her children was a toddler and the other was an infant, and they were enrolled in a home day care. Jones, her father and her sister worked to get her mother a home health aide through Medicaid, she said. The family was able to manage, with difficulty, until March 2021, when all their arrangements collapsed at once: The woman who ran the home day care took another job, so Jones’s child care disappeared. Her mother’s condition became so bad that she could no longer remain at home, even with a health aide five hours a day.
It was all too much. “I gave up a career that I love,” Jones said, because the cheapest child care she could find was $2,500 a month for her two kids, and that was financially out of her reach. Her mother, a school secretary, worked up until the day she was diagnosed with dementia, but “there’s no safety net for the elder working class. That was really so devastating,” Jones said. Her mother died that spring.
According to an AARP survey from 2021, caring for older family members is a financial strain for many: “The typical annual total is significant: $7,242. On average, family caregivers are spending 26 percent of their income on caregiving activities.” That’s just the out-of-pocket cost, which doesn’t account for the sweat equity that loved ones are putting in. PHI has estimated that 43 million people provide unpaid caregiving to friends and family members, and that their “economic contribution is valued at $470 billion.”
The elder care crunch is only going to become more dire as the population ages. According to a 2022 report on the imperative to improve nursing home quality from the National Academies of Sciences, Engineering and Medicine:
The United States, like much of the world, has an aging population. Half of today’s 65-year-olds will need some paid long-term care services before they die. By 2030, one in four Americans will be age 65 or older. The fastest growing group will be those over age 85; this group is expected to grow from 6.5 million to 11.8 million by 2035 and 19 million by 2060. Marriage and fertility rates have declined, while life expectancy has increased, meaning fewer family caregivers will be available.
The report has recommendations for improving nursing home care including increasing federal Medicaid payments to states, requiring that states use funding to raise workers’ pay and expand staffing, and requiring a full-time infection control specialist. There’s also need to form some kind of infrastructure for home care, like the kind Rebecca Jones was doing, said Amy York, the executive director of the Eldercare Workforce Alliance.
But many ailing loved ones need care now, and help isn’t necessarily on the horizon. I asked York what sandwich generation parents can do in this moment, and she said, “One of the things that needs to be happening is that caregivers need to speak out.” She added, “Older adults tend not to, because we don’t want to think about getting older.” But lawmakers in particular need to hear from their constituents how difficult this work is, and the strain it is putting on families.
If you’re not in the sandwich yet, you need to anticipate being in it someday, and get your older relatives to plan for their future. According to AARP, only 29 percent of older Americans have planned with their families how they want to be cared for as they age, and only 12 percent have purchased private long-term care insurance. Jelana Canfield, who lives in Hillsboro, Ore., and owns a bakery, told me via email that her mother, who has Parkinson’s, got long-term-care insurance after caring for her own mother, seeing how stressful it was and how financially out of reach good memory care was.
But even though her own mother is in a good assisted-living situation funded by that insurance, Canfield told me she wishes she could afford to keep her mother in her own home. She said her mom calls her four or five times a day, adding, “I’ll call back while pushing my guilt down deep so I don’t cry that I’m not the one who is taking care of her anymore after three years of my husband and I doing everything for her.”
Though it isn’t possible for all families, rotating family members in to help care for elders can help lighten the load. Terryn Hall, who lives in Durham, N.C. and wrote about caring for her grandmother in The Washington Post, told me about helping her mother, who is her grandmother’s primary caretaker. When Covid hit, “I jumped in and started helping out more. My mom is the primary caregiver, I was always the pinch-hitter,” she said. She took her grandma to medical appointments, made sure she had food and helped organize other family members who wanted to help.
“I wish there were more frameworks or social narratives around staying home and building a community,” for younger people, Hall said. It should be just as aspirational, she said, as moving away from your family of origin to start a big career. Though she doesn’t have children, Hall said she would like to, and would want to live near family that could help her care for them.
One of the things that stood out to me in the many conversations I had with parents of the sandwich generation was how isolated they felt, because the work of caring for parents with chronic illnesses at the end of their lives was so hard and so sad. Talking about how common this is, and how difficult, won’t create an elder care system where none exists, but acknowledging this as a collective experience is one way to ease the burden.
Want More?
In The Atlantic, Judith Shulevitz reviews new books by Elizabeth McCracken and Lynne Tillman in which “daughters try to transcribe the discordant emotions provoked by a mother’s decline and death.” As Shulevitz puts it: “Doing battle with monsters is an inescapable part of elder care. Ministering to mothers, to bodies that were once all-powerful and the source of everything good but are now reduced to helplessness, is particularly scary, or at least very eerie.”
In September, writing for The Times, Paula Span looked at the quiet cost of family caregiving. “The pandemic amplified the conflict between employment and caregiving, Dr. [Yulya] Truskinovsky [an economist at Wayne State University] and colleagues found in another study. ‘Caregiving arrangements are very fragile,’ she noted. While families often patch together paid and unpaid care, ‘it’s unstable, and if one thing falls through, your whole arrangement falls apart.’”
In July, The Times’s Lydia DePillis, Jeanna Smialek and Ben Casselman reported that “a lack of child care and elder care options has forced some women to limit their hours or sidelined them altogether, hurting their career prospects.”
The Times’s resident ethicist ponders the question: “Am I Obligated to Look After My Insufferable Mother?”
Tiny Victories
Parenting can be a grind. Let’s celebrate the tiny victories.
My 4-year-old’s resistance to preschool was very high this morning and we were about to miss drop-off time. While she was in her room I turned on the “Frozen” soundtrack as loud as I could, knocked on her door like Anna does in the movie, then started dancing and singing around the house. By the second song she was laughing so much that I got her clothes on and teeth brushed and in the car seat, just in time to leave — and I felt like I got a workout in as well!
— Samantha Campbell, Maui
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Source: Elections - nytimes.com
