Jenn Chan was in her early 20’s when she stepped in to become the primary caregiver for the beloved grandmother who had raised her. She spent the next ten years on duty, juggling her life around managing her grandmother’s changing and ever-expanding needs.
“It was a roller coaster. I learned day-by-day, through trial and error,” said Chan, now 38. “She had diabetes and I learned how to give insulin shots, and how to transfer her in and out of her wheelchair. Then it was bathing her and changing her diapers.”
Although other extended family members stepped in to assist, Chan often felt isolated in her role and struggled with time management. She recalls feeling especially uncomfortable when peers told her she was “noble.”
“They didn’t have the responsibilities I had, and they didn’t understand them,” she said. “I had a different perspective but I was no hero.”
With smaller families and longer lifespans for the oldest generation, a large and growing number of young adults are being pressed into service as unpaid family caregivers.
A study from The Associated Press-NORC Center for Public Affairs Research found that a third of adults aged 18-39 had provided informal care to a loved one. (The role of younger caregivers is only starting to be recognized. Since 2013, The AP-NORC Center annually investigated caregiving and long-term care by polling Americans aged 40 and older; the poll expanded to include young adults under 40 for the first time in 2018.) The study found that young caregivers are much more likely to feel lonely compared to caregivers 40 and older (74 percent versus 46 percent).
“Younger caregivers function like other caregivers but they face additional stressors and time constraints; they are more likely to be caring for a child as well,” said Nicholas James, a graduate student at the University of Central Florida who is focusing on the responsibilities facing young caregivers in his doctoral research.
“We see caregiving interfering with their ability to make a living. Half of them work part-time or are self-employed, underemployed or unemployed,” he said. “They have to be flexible.”
James said his research shows that this group feels unprepared for the work that has often been thrust upon them, which can contribute to higher levels of stress and burnout.
While they are as interested in receiving support as other, older caregivers, he found, their busy lives often keep them from seeking it. Their demanding schedules mean they’re likely to go it alone.
“They don’t show up in the interventions. They say, ‘I don’t have time for a support group; I can’t leave my people alone while I get help,’” he explained. “We also see attitudinal barriers to care. They say, ‘I can power through this.’”
James suggests that adapting services to this tech-savvy group could help them access resources that can aid them in developing or strengthening coping skills.
“We need to think about other ways to reach young adults with their strained schedules. Is there an online group or can we video chat; technology may help us with the gap,” he said. “We need to advertise (for support groups) in places where they will see it.”
Jenn Chan’s experience with her grandmother showed her the importance of feeling appreciated while in the midst of doing the hands-on work of taking care of a loved one.
During her caregiving years Chan found help and guidance through support groups and went on to facilitate groups for family members still in the thick of their duties. That gave her a light bulb moment, inspiring an idea for another way to boost the morale of caregivers. She’s launched a small business that sells a line of 25 greeting cards that she created specifically for caregivers.
“Caregivers experience burnout, isolation. If anyone needs an uplifting message and something tactile that shows that they are seen, it is a caregiver,” said Chan, now a Certified Senior Advisor.
Selling for $4 each, the colorful cards come with an array of upbeat messages: “You’ve got the caregiver magic,” “My quality of life exists because of you,” and “Congrats, you’re the best senior caregiver ever!!!” There’s even a “You Inspire Me” card written in Chinese.
It’s not just individuals who’ve snapped up the cards to thank their personal caregivers; businesses and organizations that employ caregivers in assisted living, long-term care and home care agencies also purchase the cards by the box as a way to give recognition and honor to their work force.
“They tell me the cards capture what they wanted to say, I gave them the words of gratitude,” said Chan. “It’s not a generic thank you card, the language is caregiver-specific.”
Calling herself an entrepreneur in the senior care industry, Chan’s next project is still in the startup phase. She founded the Senior Shower Project and is now prototyping what she calls a ‘caregiver party kit in a box.’ The concept she is developing will give a boost to caregivers and create a celebratory ritual to honor their efforts.
“We have baby showers and wedding showers. There are quinceañeras and bar mitzvahs to celebrate earlier life milestones. We need ways to highlight the caregiver who is taking on a role in a later stage of life,” she said. “They need a party too.”