Adult children are caregiving for their aging parents as no generation has ever done before.
On a Saturday in late September, Bart Goldstein found out his 91-year-old father had been carjacked in Washington, DC. The incident was the result of a failed mission—an attempt by Goldstein’s father to prove he knew how to drive from his suburban Maryland senior residence to his son’s house a few miles away. “He’s just proud,” says Goldstein, and won’t admit that he needs to give up driving.
That Saturday, according to Goldstein, his father was a little panicked when he realized he was lost somewhere in Southeast DC. Without a cell phone (he doesn’t have one), his father rolled down his window to ask a passerby for directions. “The man pointed a gun at him and told him very politely to get out of the car, that this was a robbery, and that he was going to drive away in the car,” says Goldstein, recounting his father’s story. Before driving away, Goldstein says the man directed his father to a senior center down the street. Someone there called the police.
“I’m starting to plant the seed with my dad that his driving days are numbered,” says Goldstein, who can see a downward shift in his father’s cognitive and physical functions.
“The feeling of losing control over the body and the ability to do the things that one used to do can have a really profound and negative impact on an older person’s sense of self,” says Sandy Krohn, PsyD, who specializes in geriatric psychology in Manhattan. It’s hard on the adult child as well. Parenting an aging parent, Krohn says, requires patience and sensitivity, and often an entire village of specialists, including mental and physical healthcare workers and sometimes round-the-clock aides. As a parent goes from vibrant to needy, it’s profound, say geriatric mental health professionals, for adult children to shift from being cared for by a parent to caring for a parent. That’s especially true when everyone is in denial that needs have changed, says Krohn, and when “new roles don’t quite feel right.”
It’s a collision of sorts between evolution and how we see aging in our culture. While we are prepared for the challenges of raising children—from what it takes, physically and emotionally, to what it costs—the task of parenting our mothers and fathers can hit in unexpected ways. “Caring for a parent certainly doesn’t come as naturally as caring for a child,” says Krohn. “Loving a child is different…a crying baby draws out something different [in you] than a crying parent.”
In the United States, 17% of adult children will take on the role of caretaker to their parent at some point in their lives. That’s according to a study by the Center for Retirement Research at Boston College, which also reports that 6% of adult children are currently acting as a parent’s caregiver in some capacity. “At any given point, those who do provide care devote an average of 77 hours per month, which can take a toll on both the finances and health of the caregiver,” write the authors of the report. A report by the Pew Research Center shows that one in 10 adult children are caring for parents while raising their own kids.
These numbers are higher than in the past because the rules have changed, says Dr. Maria Torroella Carney, an internist, geriatrician, and palliative care physician at Northwell Health, who added that this results in a lack of mentors and guidance for the current generation of caretakers. She says we have become a “very medicalized society,” but asserts that no one updated the proverbial rule book to help us navigate it—not the medical community and certainly not the policy makers. “Care is being pushed from the hospital to the community,” says Carney. “We are sending people home to do things that usually only nurses or skilled professionals are trained to do. And now we are asking families to do it.” Medical tasks that family caretakers are expected to perform include giving injections, needle sticks, administering insulin, cleaning wounds, and even managing catheters.
And there are other tasks, too, as older adults live longer with chronic diseases and disabilities: shopping, making appointments, cleaning, accounting, communicating with doctors, and protecting parents from fraud, abuse, and mistreatment. And, for many adult children, dressing, toileting, bathing, grooming, walking, and feeding their aging parents. How we got here, says Carney, is economics. “The benefits are for the insurance companies,” says Carney. “It’s much cheaper [for insurance companies] for patients to be at home.”
The problem with this, Carney says, is that it puts “the burden on the individual and their caregivers to manage a complex care plan,” which can be an overwhelming task. She added that adequate care for the patient is just assumed to exist or that it will be provided, but the type and level of care that is necessary is difficult. “We are uneducated [about it] and unprepared,” says Carney, adding that many caretakers feel that they are failing. “But they are not failing, they’ve just never done this before.”
When Bill Widdoes’ mother was 89, the breast cancer she’d been living with for 20 years metastasized to her spine, liver, and lungs. Weekly dinners with his mother turned into daily visits. “It became clear that she needed at least coverage through her bedtime and somebody there almost immediately after she woke up,” says Widdoes. Because Widdoes was the only one of his siblings who lived within driving distance of the Pittsburgh-area senior community where his mother had a home, he became the manager of his mother’s life—organizing schedules for aides, driving her to doctor’s appointments, overseeing her medical needs, and helping her make decisions. “It was a job that had to be done,” he says.
Like Widdoes, Jane Smith (whose name has been changed to protect her privacy) is the point person for her aging parents, 96 and 82. Both Smith and her parents live in Manhattan. Smith, who is married with two teenage sons, has two older siblings who don’t live nearby. While she works full time as a writer, she also manages her parents’ care, which includes nurses and nurse’s aides, medical doctors, and mental health professionals, and that leaves little time for work. “Somebody has to communicate what is going on with my mother to her psychiatrist, because really the psychiatric stuff is the center of her problems, the dementia,” says Smith. “And my father is having a tough time dealing with what’s going on with my mother.”
For Smith, the caretaking is “day in and day out.” Multigenerational caregivers like Smith “provide more than two and a half hours of unpaid care a day, on average” and get less sleep than parents who are not also caring for an adult, according to Pew Research.
The good news is, there are programs that will pay individuals working as caregivers for their family members. Eligibility for these programs varies depending on income and state residence. The website Paying for Senior Care has created a locator databaseto help adult children determine which program fits their needs and the needs of their parents. But the process can be complicated.
“We need to focus on helping caregivers do this role better,” says Carney. “Caregiving can be a wonderful experience and many people find satisfaction in having purpose and joy in being able to provide care.” Dr. Caitlin Snow, a psychiatrist in private practice in Manhattan who specializes in geriatric mental health, says it’s key for adult children who take on the role of caretaker to “assess their own bandwidth and abilities as a caretaker separate from their being a responsible and loving family member.”
That said, this new system that we’ve fallen into isn’t sustainable, says Carney. She warns that we need to change the way we approach medical care for the aging and—with 10,000 baby boomers a day turning 65—we only have about 10 years to fix the current system. “Right now, they are ‘young’ older adults. But in the next 10 to 15 years, this over-65 population is going to outnumber the under-18 crowd for the first time in U.S. history,” says Carney.
One of the biggest problems, according to Carney, is a failure to treat the whole patient. Because we have become a nation of medical specialists, doctors “are not seeing the big picture. They are not identifying the cognitive impairment, they are only treating the heart, or the lung, or the infection.”
Carney’s solution? Turn the medical community on its head.
“Social workers need to be at the clinical front lines—we need to change the culture in medicine to value geriatric care,” says Carney. She also adds that as a population, we need to rethink aging in place. “When we start having cognitive impairment and physical impairment we really need, just as children, to have someone with us, somebody that’s trustworthy that can oversee and supervise,” says Carney.
“And while you want to age in place for as long as possible, I don’t know that it’s possible to age in place for forever.
Next Steps and Useful Resources
- My aging father is depressed—and caring for him is as hard as you’d think.
- Is it Alzheimer’s or normal aging? Here’s how to tell.
- 7 ways to own your age—lessons learned from a life well lived.
This article is published courtesy of our friends at The Well, by Northwell Health. See all of their articles here.