Laura Bulson is torn. On one hand, she feels obligated to care for her 90-year-old mother who has dementia, even though the two were estranged for years. On the other, she doesn’t like what moving her mother in with her family in 2017 has done to her relationship with her grown children, several of whom have lived at home at different times over the past few years. “The hardest part was our family dynamic changed,” Bulson said.
For example, Bulson wanted to include her mother when the family played board games after dinner; she thought it would be good for her cognition. But her mother struggled, her children didn’t enjoy it and the family stopped playing together.
“We became very separated,” said Bulson, 60, who lives in rural Alabama. “And then there was all the resentment that all of us felt as all of this changed.”
Taking care of her mother also has gotten in the way of spending time with her grandchildren or going to funerals, she said. “Everything’s different. Like you’re always on, and you can’t be who you want to be anymore.”
Sandwich, panini, seven-layer dip?
For years, the term sandwich generation has generally been applied to adults (mostly women) taking care of their aging parents and their minor children at the same time. Bulson feels the same exhaustion and frustration, and faces a similar lack of societal support, but she’s part of a less-recognized group: people who are taking care of their aging parents and are still supporting adult kids — at home or otherwise (sometimes referred to as the “club sandwich generation”). Another oft-overlooked group is people who are caring for their aging parents and helping out with their grandchildren (a.k.a. the “grand-sandwich generation”).
The concept of the sandwich generation needs to change, said Patty David, vice president of consumer insights at AARP. “If you put a definition on it, it’s those that are caregiving for both a younger loved one and an older loved one,” she said. “And I think it’s no longer really about the age. It’s about the state of, and what is happening in their world.”
Several trends are remaking the traditional sandwich: First, many Americans are living longer. Overall life expectancy increased by 2.3 years between 2000 and 2019 (although the gains were not evenly distributed among the population and were eroded by the pandemic and the opioid epidemic). At the same time, many young adult children remain in the household beyond age 18 or come back; in July 2022, half of adults ages 18 to 29 were living with one or both of their parents, compared with 38 percent in 2000.
It’s difficult to quantify how many caregivers are sandwiched between their parents and their adult children, or between their parents and their grandchildren. Most surveys of caregivers do not collect information on additional people receiving care, such as minor children, adult children or grandchildren, and whether those individuals have additional needs or disabilities, said Heidi Donovan, a professor of nursing and co-director of the National Rehabilitation Research & Training Center on Family Support at the University of Pittsburgh. “It’s a huge limitation of the research.”
But according to a 2022 Pew Study, 29 percent of caregivers with adult children were helping an adult child financially, whether that child was in their household or not. And an AARP survey found that between 2015 and 2020, the number of caregivers of adults with grandchildren in the household increased from 28 percent to 30 percent.
Together, these societal changes mean “that the number of years that people are sandwiched in between taking care of those that are younger than them and taking care of those that are older than them are just lasting longer,” David said. In addition, people are having children later in life, which has an impact not just on when they might be caring for two generations but also on their work, financial and retirement plans.
“It’s maybe a multilayered sandwich at this point,” agreed Nicole Jorwic, chief of campaigns and advocacy for Caring Across Generations, an organization pushing for greater governmental support for caregivers. Jorwic can point to her own baby boomer mother — who is caring for a mother with Parkinson’s, an adult son who has autism and two grandchildren — but added that similar situations can be seen “across our network.”
Julia Beck, founder of the It’s Working Project, an organization that focuses on caregivers in the workplace, said “sandwich” is an inadequate term. “I think of it as a panini,” said Beck, a Chevy Chase, Md., resident who has four children ages 20 to 31, and an aging mother in Philadelphia. “It’s so messy, the choices are messy, like there’s no good, right, obvious choice.”
The demands never stop, just like a panini keeps oozing out the side, Beck added. Even if there isn’t an immediate crisis with your elderly parents, “there’s crisis a-go-go,” she said. “You dial the number, and it’s sort of like, ‘What’s today’s ailment going to be?’” And “you’ve got all these other people who are not babies, but certainly not independent in the way that maybe we defined it in our younger lives.”
For Sebrina Perialas, who cares for a mother with dementia, watches her 9-year-old grandson several days a week and supports one daughter in graduate school and another with medical issues, it’s more like a seven-layer dip. Or, said the 63-year-old special ed teacher from Pulaski, Tenn., it’s like whack-a-mole: “Which thing is going to pop up that day?”
The stress of dealing with adult kids or grandkids
Whatever metaphor they prefer, life can be stressful and overwhelming for adults in this situation. Try as they might, they always seem to be overlooking someone (at the very least, themselves) or something. They often have inadequate support for daily life, much less for the crises that could crop up at any moment.
Since 2015, Deborah Vlock has lived in a multigenerational household in Central Massachusetts with her parents (her father died in 2019), her husband and her two children, now in their 20s, which allowed the family to share resources and become closer. “Our family, primary and extended, is medically and psychiatrically complex,” she said. “It makes life costly, challenging, and calls for creative thinking and measures.”
To help make ends meet, Vlock is also a care provider for a woman with developmental and psychiatric conditions who lives with them. “She is like family, and we all love her,” said Vlock, who is 60 and has autoimmune disease and long covid. “But at a time I thought I might be starting to wind down, I’m caring for another adult again, and neglecting myself.”
Lori Kneeburg, 62, lives in northern Georgia with a 33-year-old-son and a 21-year-old daughter finishing college nearby. Since last August, Kneeburg has been driving back and forth frequently to her hometown in northern Florida, first to help both her parents with medical situations and then to help her mother following her father’s death.
“You feel a lot of guilt, because you’ve got to be available for this one and you need to be available for this one,” Kneeburg said. “And you’re not sure you’re giving all the time where you need to give.”
While she wants to be helping her mother settle her father’s estate and perhaps move to an assisted-living facility, she also wants to be available to help her daughter “learn how to negotiate life.”
Laura Reagan is a 51-year-old licensed clinical social worker from Crownsville, Md., who helps care for a half-dozen elderly family members — two parents, two stepparents and two in-laws — who live in Norfolk. Reagan and her husband travel back and forth frequently, dealing with issues including dementia, cancer, broken bones and the shortage of help.
They also have two adult children, 24 and 26, who are out of the house but don’t feel quite launched, perhaps, Reagan said, because their young adulthood was interrupted by the pandemic. Her kids need help with money, emotional matters and tasks required to function as an adult. “The weight feels heavy for me,” Reagan said. She knows from her practice that other parents of young adults are in the same leaky boat.
All these needs have collided to the degree that about eight months ago, Reagan stepped back from personally treating clients in the trauma-informed practice she runs. When she was carrying 15 to 20 people’s stories “in her heart,” that didn’t leave room for all the emotions stirred up by caregiving.
“I think one of the things that’s really missing from the conversation about the demands on middle-aged people of caregiving for elderly parents is the emotional load,” she said.
At times, caring for elderly parents and adult kids or grandkids is like existing in two different realities.
“To my mom, there’s no such thing as online banking. You pay your bills each month with a paper check. You communicate by talking on the phone,” Kneeburg said. “My daughter is texting and video chatting. You’re kind of straddling the digital world and the analog world, too.”
And it can be difficult to keep two generations happy. When Perialas takes care of her grandson at the home she shares with her mother, she has to be a buffer between them, because her mother complains when the boy touches things, leaves a mess or has ketchup on his mouth. Being so critical is completely unlike the woman her mom was before the dementia, Perialas said: “My mother would have dared someone to look at her great grandson in that fashion.”
Of course, some of this comes with positives: Kneeburg is proud of the legal and financial matters she has learned to handle. Reagan is grateful she has been able to forge a different connection with her mother, whose stroke changed how she is able to express herself. “I’ve found a groove,” said Perialas, whose life became especially challenging when she was also caring for an aunt. “And I just think that it’s important to realize that every day is a gift.”
Still, Perialas never anticipated she’d be helping with a grandchild at this stage. Other parents didn’t expect to have so much involvement in their kids’ young adult lives. “You’re supposed to be an empty nester and you’re supposed to have this freedom,” said Reagan, who was already a mother at her kids’ age.
And none of the people we spoke to thought they would have this much responsibility for parents who are this old. “I have a huge issue with how long we’re living, because I’m taking care of a shadow of a human,” Bulson said.
Lack of support, concern about the future
Because Bulson’s family isn’t nearby and she lives in a small town, it’s difficult for her to get a break.
“Try and find a caregiver in Cullman, Alabama,” she said. If those responsible for elderly parents are lucky, they have arranged a network of support they are comfortable with — Perialas, for example, is backed up by a longtime friend who brings her mother breakfast daily; palliative care a couple of times a week; a church group that comes once a week; and her daughters. Reagan said she worries that the current caregiving plans for her parents could collapse “like a house of cards,” and, even as a social worker, she finds it difficult to know what services to arrange.
“There is an overwhelming feeling with family caregivers of being in it alone,” said Jorwic, “and that’s what we’re trying to move away from.” In February, Caring Across Generations delivered a petition with about 100,000 signatures to Congress that demanded funding for paid family and medical leave, universal access to child care, and home and community-based services for older adults and disabled people.
For now, sandwiched parents worry about their own old age. Some are determined not to put their kids in the same position. Reagan said she has told her children, “It’s our responsibility to arrange our own help for ourselves and tell you what our wishes are.” But the future is daunting. Elder care “is so expensive it’s outrageous,” Bulson said. “How do you plan for that?’”
Vlock said she sees the whole culture of retirement shifting. “I think it’s part of the contemporary American condition that winding down, financial sufficiency and self-care are no longer a standard feature,” she said.
“I feel like we’re lucky if we get out of this alive,” said Beck, going back to her concept, the Panini Generation. “Because there are two hot pieces of iron coming at us from either side.”
