By Michelle Seitzer
A new generation of caregivers is emerging, and the stats may surprise you.
Nearly one quarter of millennials (those between the ages of 18 and 34)—that's 9.5 million young adults—care for a parent, grandparent, or other relative, says a 2015 report from the National Alliance for Caregiving and the AARP Public Policy Institute.
And these young caregivers aren't just living rent-free in a relative's basement: per the AARP report, the average millennial caregiver is 27 years old, works 35 hours a week or more, and lives with or in close proximity (20 minutes or less) to the care recipient. About half are married.
Learn more from the real-time, real-life experiences of two millennial caregivers...
What does caregiving as a millennial look like? For UK resident Jane, caregiving has been a way of life for decades now. She has been a young carer (YC, as she calls it) for as long as she can remember—at least since she was about 7 years old—and provides care for three family members: "My sister is autistic with learning difficulties and OCD, my dad has anxiety and depression, and my mum has leukemia & chronic anemia, and is currently on her second lot of chemo."
Feylyn Lewis, 29, has taken her role and experiences as a young caregiver (which started at the tender age of 11) a step further: she is currently a PhD student focusing on the identity development of young adult caregivers in the United States and United Kingdom.
"When I was 11 years old, my mother underwent a spinal surgery that went incorrectly, leaving her in chronic pain. She was classified as permanently disabled and unable to work," Lewis explains. "My older brother (7 years older than me) dropped out of college in his sophomore year to come home to provide care for my mother and me. My brother became responsible for all of her physical care and he took on a job to pay our household bills," says Lewis. "As a younger child, I assisted in my mother's care wherever possible and I continue to do so today."
What's the most difficult part of caregiving as a young adult? The responsibility of caring for three people weighs heavily on Jane, who is in charge of all their medications, provides constant emotional support for her sister and father, and organizes and attends all hospital and doctor appointments. She does the bulk of the housework too: cooking, cleaning, finances, shopping, and more. "It does often feel like the world's on my shoulders and my caring responsibility never ends," she says. "There's always someone to worry about or something that needs sorting."
There isn't much time for friends, and even her extended family often cannot relate or are unsympathetic to the pressures on Jane. "It's kinda like I'm just expected to deal with it!" she says. "I always have to be the strong one on the outside regardless."
Lewis believes the most difficult part is recognizing that everything you do in the present— and especially as you look towards the future—involves the person in your care. "You contemplate how to manage caregiving with every major life decision. This feels very different than my other millennial peers who do not have to make those same sort of considerations or have that same sort of responsibility," she explains. Lewis shares Jane's feelings of isolation, and the lack of empathy or understanding from peers.
Both Lewis and Jane cite the lack of daily at-home/community support (financially, medically, and more) as a major challenge. Support for young carers is massively underfunded, says Jane, but Lewis is encouraged by speaking with other millennial caregivers. "We find that we share many stories and experiences," she says.
How do you use tech in caregiving? Because I do not live with my mother 24/7, I have found apps like What's App and FaceTime to be very helpful for me to check in and see how she's doing," Lewis says. "My mother has also found it helpful to use a computer app that allows her to contact her physician at any time of the day or night."
Being able to book some doctor's appointments online and coordinate with her sister's autistic support team has streamlined some aspects of Jane's caregiving life."The use of technology has definitely been a massive help in caring," says Jane, who is thankful she can text or call home to check in when she's at school or work, or her family can call her as needed. "I can organize things and contact people whilst on the go. Multitasking becomes second nature in being a young carer!" she says.
What do you want the world to know about millennial caregivers? Today's millennial caregivers need recognition and awareness of their caring roles, says Lewis. "To aid in that recognition, it's important that society stop perpetuating the myth of the 'narcissistic Millennial,'" she says. "I've found that health and social care professionals often believe that myth, further making them blind to caregivers in that age group." Lewis would also like to see more flexible school and work environments and expanded paid family leave policies. Jane agrees with the awareness piece. "Having been a YC pretty much all my life, it's amazing how many people still don't get it," she says. "I also want awareness to highlight the fact being a YC isn't necessarily a totally negative thing either," she adds, explaining the stigma—among adults, professionals, peers, and even family—associated with being a younger caregiver. But what Jane believes is the most important lesson is one that benefits caregivers of all ages—and that's connecting with other caregivers. "Reach out to anyone they think might be a young carer...as knowing someone's there makes a massive difference and a lot of us do it everyday without realizing it (I never knew I was a YC). And we're such a hidden army!"
Are you part of the hidden army of caregivers? Share stories and get support in our Caregivers Connect Facebook group.