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When her father moved into a nursing home thousands of miles away, Jennifer Levin realized she had to stop pretending his health was fine.
Two years earlier, Levin’s father began experiencing symptoms of progressive supranuclear palsy, a rare brain disorder that can limit how a person walks, speaks, swallows and thinks. When he moved to the nursing home, Levin, then age 32, decided to fly back and forth from Los Angeles, where she lived and worked, to help with his care. On top of coming to terms with his diagnosis, she was now managing his care logistics, which quickly grew complicated.
Levin’s job, working in the writers rooms for various television shows, such as CSI and The Chicago Code, provided flexibility to take extended time with her father between seasons. But Levin was the only child of divorced parents, which meant the responsibility of traveling to and caring for her father fell only to her.
“If I called a wheelchair-accessible ride and it didn’t show up on time, I would lose it,” Levin said. “I worked so much to get pieces in place and when things that ordinarily felt rather small didn’t work out, I would just have this disproportionate reaction.”
Levin felt isolated while caring for her father, but she had no idea how increasingly common her story is.
More young Americans are becoming caregivers to elderly or disabled family members, according to a recent study from Genworth Financial, a company that researches long-term care options. That is putting them under considerable stress as they seek to balance their loved ones’ needs with their own work, finances and need to care for their children.
In 2010, Genworth, surveyed 800 individuals and found that the average age of caregivers was age 53. Eight years later, after a survey of 1,200 individuals, the group found that number had dropped to 47.
Care recipients are getting younger, too. In 2010, more than half were older than 75. Less than a decade later, the average recipient’s age is 66 years old.
Colleen Dennis, who consults and trains the long-term insurance claims team at Genworth, said there are many reasons why caregivers and recipients are younger than in recent generations. The rise of chronic disease is one, though Dennis added that because people are living longer, those who may not have previously become caregivers are now entering the role. Better and earlier detection of diseases like Alzheimer’s disease have also contributed to an earlier need for caregiving.
However, the drop is also linked to the restructuring of the American family, said Bruce A. Chernof, president and chief executive officer of The SCAN Foundation, a nonprofit that works to provide resources for aging adults.
Baby boomers are on the verge of retiring, if they haven’t already, and Chernof said their caregiving needs are different from those of their parents. Baby boomers are more likely to be unmarried or without children than earlier generations and are more likely to be living alone as they age.
“The ‘Leave it to Beaver’ kind of model of mom and dad and two kids is not really the way American demography necessarily looks today, even in younger populations,” Chernof said.
The fastest growing age group in the U.S. is 85-years or older, Chernof said. According to a 2015 U.S. Census Bureau report, longer life expectancy rates mean an increase in the global population of older generations. There was also a 2 percent drop in birth rates in the U.S. in 2017, as the PBS NewsHour reported in May — the largest single-year decline since 2010.
These demographic trends contribute to more people living alone in old age, making them more likely to turn to extended family and friends in their 20s, 30s and 40s for extra assistance. By age 40, a third of Americans already consider themselves to be caregivers, and an additional third of 40-year olds expect to become caregivers in the next five years, according to a 2018 Associated Press-NORC study funded by the SCAN Foundation.
That’s not because baby boomers would rather receive help from a family member over hiring a paid health aide, Chernof said (though he added the low median pay rate for professional health aides — $11.12 an hour in 2017 — could contribute to an increased demand for family members stepping into the role). The more likely cause, Chernof said: the baby boomer generation has very little savings.
Almost half of Americans nearing retirement have saved less than $25,000, the NewsHour reported in June. The amount financial planners advise Americans save for retirement varies widely. Some encourage saving enough so that you could spend 60 percent of your current annual income for each year of retirement. Others advise having up to 110 percent saved, retirement experts told the NewsHour. All experts agreed, however, that saving only $25,000 was by far not enough. To respond to this crisis, some states such as Oregon set up savings programs for employees who cannot receive a 401(k) plan from their employer.
Many boomers have accumulated little for retirement because their employers do not offer 401(k) savings plans, Chernof said. He said the 2008 financial crisis is another contributor, when some of those now approaching retirement went bankrupt or lost their homes, never fully recovering financially.
A third of Americans said they worried a great deal about becoming a burden on their families, according to a 2016 AP-NORC survey. And among U.S. adults who said they wanted to receive long-term care, 77 percent of them said they wanted to remain at home for care, the survey said, while another 4 percent said they preferred to stay in the home of a family member or friend.
Another common reason people find themselves supporting a loved one is because the start of caregiving is not as pronounced as some may think, Chernof said.
“The word caregiver is very loaded,” he explained. “We all tend to think about the dramatic event, like mom doing fine, living alone in her second-floor walk-up until she falls and breaks her hip.”
In reality, said Chernof, most people don’t experience a dramatic beginning of caregiving. Millennials may shop for groceries or do household chores for a loved one, but not see themselves as caregivers.
For Jennifer Levin, it was not until her father died in September 2014 that she considered herself to be a caregiver. Even while flying back and forth between L.A. and New York City to provide needed assistance, millennial caregiver was not a common term, so it was not something she identified with.
Levin instead remembers feelings of anxiety and worry over her father’s care, which as the Genworth study found, is not uncommon among younger caregivers. The study reported that although 82 percent of all caregivers felt positive about providing care, over half felt high levels of stress. More than a third reported feelings of depression and resentment.
That’s partly because caregiving often presents unimaginable challenges, said Crista Chelemedos, executive director of Senior Advocacy Services, an organization that helps seniors select insurance and housing.
Traveling to doctor appointments, tracking and purchasing medications and being available whenever assistance is needed is “not something you train for,” Chelemedos said.
Caregiving can also have tangible negative effects on a person’s finances and career. Sixty-three percent of caregivers use their own savings and retirement funds to pay for care, and 35 percent reported repeated absences at work, according the latest Genworth study. Managing doctors appointments and medications can feel like another “full-time job,” Chelemedos said.
The role reversal of providing care also can amplify stress. For example, a child may feel responsible for a parent, which can be challenging and disorienting. That may be especially true when a person in need of assistance “thinks as an adult and acts like an adult,” Chelemedos added.
During the time she cared for her father, Levin said it was difficult when her friends who were not caregivers did not fully understand how isolated she felt. Instead, she bottled up her own stress and worry while struggling to relate in social situations.
“Hearing friends complain about everyday things underscored for me what we didn’t have in common,” she said.
Levin’s social experience is not unusual, either — in fact, an AP-NORC poll asked 1,024 past or current caregivers whether they had ever felt isolated while providing long-term care. According to the survey, 74 percent of 18 to 39 year olds reported feeling this way, compared to 46 percent of those 40 and older.
Furthermore, in 2017, a Kaiser Family Foundation survey found that 45 percent of caregivers of all ages only sometimes, rarely or never seek the help they need in managing feelings of anxiety or sadness, making them also “less likely to say that they often felt supported in getting the spiritual support or counseling they need or to manage feelings of anxiety or sadness,” said Bianca DiJulio, who helps direct the foundation’s public opinion and survey research.
More than half of caregivers do not feel qualified to provide physical care, according to Genworth Financial. This includes helping a loved one bathe, eat or manage their doctors appointments and medications.
Chelemedos of Senior Advocacy Services recommended people do more to prepare for the possibility of caregiving before the service is needed. For instance, people who are middle-aged should complete an “advanced care directive,” or a living will. This document outlines who may make decisions about an individual’s long-term care. Coming up with a plan early on eases stress years later, Chelemedos said.
Financial planning should be another top priority. Dennis of Genworth Financial suggested caregivers who are balancing work determine whether their employers offer paid caregiver leave. Paid family leave was accessible to only 13 percent of all private-industry employees in March 2016, according to the Bureau of Labor Statistics. However, a Pew Research Center study found that 67 percent of Americans in 2017 supported paid leave to care for a family member who is ill. One proposal put forth by Democrats includes the Family and Medical Insurance Leave Act, which would provide workers with up to 12 weeks of partially paid leave to take care of their own serious health conditions, pregnancy or caregiving responsibilities. Senator Marco Rubio has also introduced a version of paid family leave, though the bill would only apply to new parents. The issue is expected to be reintroduced and negotiated by Democrats and Republicans in 2019.
Financial discussions should also map out how to pay for long-term care, accounting for costs that are expensive and can rise unexpectedly. Online calculator tools can help estimate the cost of care, based on state and region, and how prices may change over time.
But caring for a parent can carry more than a financial toll. Levin said connecting with other caregivers provided much-needed relief from the emotional stress of caregiving. That is why she launched a Facebook group in January 2017 called the Caregiver Collective. There, millennial caregivers, no matter where they were, could share their experience with others who were in similar situations.
“So many of us are doing this, but none of us are talking about it,” Levin said.
Most of her stress had come from feeling responsible for a family member and seeing his vulnerability — all the while feeling unable to talk to friends about an experience not yet on their radar.
The Caregiver Collective’s 153 members use the group to post and talk about their challenges. Levin offers support, liking and commenting on posts, but said she often doesn’t need to. Many members are quick to support each other. The group has monthly video teleconference chats, and some caregivers have even met in person.
Levin wants to raise awareness about what it means to be a younger caregiver so more people can identify with the term and each other. She is not alone. Many online and neighborhood communities, like the Caregiver Collective, provide resources for family caregivers and forums to talk about an overlooked but increasingly common experience among millennials. But for Levin, age always stood out in more traditional support groups targeted for older caregivers. It unintentionally made younger caregivers feel excluded. So the goal of Levin’s Facebook group was to create a space where age wouldn’t matter.
“For a lot of people, it’s the first time admitting out loud what they’re experiencing,” Levin said. “It’s a place where they don’t feel like such an outlier, and that alone can be a big relief.”
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