For Rachel Hiles, May 23, 2015 is marked in her conscious as her own personal day of infamy.
That’s the day that her grandmother fell in the bathroom and fractured a vertebra, and Hiles’ life changed forever. The fall led to a three-week hospital stay and three months in a rehab facility. When she came home, her grandmother needed daily care.
Hiles, now 32, took on nearly all of that care by herself. Soon she was doing laundry, preparing meals, coordinating medications and doctors’ appointments, and changing her grandmother’s colostomy bag.
“If you asked me five years ago if I’d be doing this, I would have laughed at you,” says the Kansas City, Mo. graphic designer. “I would have thought that I’d have a family and be raising my children by now, not taking care of my octogenarian grandmother.”
“Being a caregiver can be stressful for any generation, but for Millennial caregivers this can be compounded because it is happening so much earlier in life.”
Hiles’ experience belies the stereotype of a typical caregiver, a Baby Boomer woman taking care of her elderly parents or an older spouse. But she is far from alone. An estimated 10 million Millennials provide daily care to family and friends, according to AARP. For nearly three in five of them, that includes helping with activities of daily living such as eating and bathing; and for more than half, it involves performing complex medical or nursing tasks.
Their caregiving responsibilities often hit as they are trying to build their own careers or start a family. And many millennials come to caregiving feeling ill-prepared, with limited experience handling medical decisions or navigating the world of insurance.
A survey by the Associated Press and the NORC Center of Public Affairs found that Millennial caregivers provide fewer hours of support to family and friends than older generations, but they report higher rates of stress.
“Being a caregiver can be stressful for any generation, but for Millennial caregivers this can be compounded because it is happening so much earlier in life,” says Jean Accius, vice president with AARP Public Policy Institute.
No one else available to do it
Millennials are taking on the role of family caregiver simply because there is no one else available to do it. A national caregiving shortage means that the adults available to answer the call for caregivers have to get younger. This trend is expected to intensify as baby boomers continue to age and millennials assume the mantle of the largest generation in the country.
Millennials’ parents and grandparents are living longer than previous generations did, and families are smaller and more geographically spread out than they used to be. Baby Boomers had fewer children than their parents did, and they’re more likely to be single. That means there are fewer spouses available to provide care and fewer siblings with whom children can share the caregiving load.
“With the aging population and changing family compositions, it’s all-hands-on-deck when it comes to caregiving. Millennials are stepping up to the plate to address the need.”
“With the aging population and changing family compositions, it’s all-hands-on-deck when it comes to caregiving,” Accius says. “Millennials are stepping up to the plate to address the need.”
Many millennial caregivers find themselves taking a more hands-on role because their parents or grandparents don’t have the financial resources to cover the cost of outside help.
Baby Boomers are less likely than their parents to have pensions, and they often have inadequate retirement savings to cover the cost of long-term care. The average monthly cost of a home health aide is nearly $4,200, according to GenWorth.
Hiles stepped up to help as her grandmother’s closest living relative. Her uncle had died and her father, her grandmother’s son, was estranged from the family.
She considers herself lucky that she was able to hire some home health aides to help, paid for by her grandmother’s savings and payments from her long-term care insurance—something only 2 percent of Americans have.
Higher stress levels
While home care aides have relieved some of the day-to-day tasks that Hiles was doing, she says that caregiving is still round-the-clock work.
“It’s not just what you do when you’re there,” Hiles says. “You’re also on the phone making appointments; you’re running errands for them; you’re constantly thinking about what’s going on.”
Millennial caregivers are more likely to work full-time than older caregivers, and they are more likely to report that their role as caregiver has had a negative impact on their career, according to the survey by the Associated Press and the NORC Center of Public Affairs.
Since they make less money than older caregivers, on average, any out-of-pocket expenses make a larger dent in their budgets. Millennial caregivers spend 27 percent of their income on caregiving costs, compared to 24 percent by Gen X caregivers and 13 percent for Boomers, according to AARP.
That financial toll comes just as they may be trying to pay down student debt or save up a down payment to purchase a home.
Beyond work or financial challenges, the role-reversal inherent in taking care of a parent or grandparent who used to care for you can be especially jarring for millennials, who may just be getting the hang of being an adult.
“Five years ago, Mom might have been helping you pick out your prom dress, and now you’re making Mom’s medical decisions,” says Gretchen Alkema, vice president of policy and communications for the SCAN Foundation. “Whereas if you’re in your 50s, there has been more of a developmental evolution of your relationship as two adults.”
Just as millennials are changing the way that we shop and the way that we work, they are also driving changes in the caregiving space as well. Millennial caregivers are not only younger than the stereotypical caregiver, they are also more gender diverse. Millennial men, who are are stepping up to assist with childcare duties that have traditionally fallen to women, are also answering the call for adult caregiving. Millennial caregivers are just as likely to be male as they are to be female.
The digital native generation is putting technology to work to help them provide care—and manage the stress associated with it
Millennial caregivers are finding virtual support groups on Facebook (since there are few live groups dedicated to the challenges young people face). Millennial caregivers are also using technology to keep in touch with both their loved ones and their caregiving team, communicating with doctors and caretakers via text and videocall; and installing smart technology, such as internet-connected devices like doorbells or light switches, in the homes of the people for whom they’re caring.
Millennials are also—often by necessity—calling on their employers to provide benefits, such as paid family leave, that accommodate their needs as caregivers. Or they’re embracing the freelance work and the gig economy to get the flexibility that they need.
“They’re not afraid to leave a job,” says Jody Gastfried, vice president of senior care at Care.com. “If it’s not working, they’re more likely to take a chance and go to a workplace that will respond to their needs.”
Still, there are downsides. Millennials who leave the workforce entirely to focus on caregiving could face lifelong financial consequences. Taking even a one-year break from work costs employees up to four times their annual compensation, once benefits, retirement savings, and future earnings are factored in. That comes on top of other disadvantages millennials face, with higher student loan burdens and lower incomes than generations’ past.
Even though taking care of her grandmother has altered the course of her life, Hiles says she has found ways to make her responsibilities more manageable.
She traded in a full-time job as a research assistant for more flexible work running her own graphic design business. And she started to blog about her caregiving experience—at Taking Care of Grandma— as a way to “send out signals” to other millennial caregivers so they know they’re not alone.
Hiles also said she feels good knowing that she’s able to give her grandmother a better quality of life than she would receive at a facility.
“It’s the least I can do,” Hiles says. “If it weren’t for her, my mere human existence on this earth wouldn’t be possible.”