Careful. It seems like almost everyone has a story, whether they’re millennials, raising kids, or seniors caring for a parent, spouse, or family member with a disability. A new AARP report found that family caregivers provide $600 billion worth of uncompensated care annually in the U.S., more than the federal government spends on long-term services and supports.
Friday’s HJ23 panel, “The Biggest Untold Story in Healthcare: 53 Million Family Caregivers,” focused on both the deeply personal stories of caring for a parent and the lack of services, support and information available to family caregivers.
As a young entrepreneur, Ray Castucciano was living his best life in California. Until that phone call from his mother in St. Louis in 2013. His father had a stroke. Castucciano immediately went to his father’s side. He hoped his stay in Missouri would be temporary, but he quickly realized that both of his parents would need help for a long, long time. Castucciano took on the role of family caregiver, doing everything from driving them to doctor’s appointments, helping with bathing and other daily activities. It was a role for which he was completely unprepared.
Castucciano explained that he never doubted whether he would help take care of his father; it was part of the Filipino culture where he grew up. But he did not understand “how life will change”. He often found himself the only male attending a carer’s support group and the only young person.
“My eyes were opened to the lack of resources available to family caregivers, and especially young, male family caregivers,” she said. Plus, she had to figure out how to make a living while putting in about 35 hours a week to help mom and dad.
About 61% of all caregivers work full-time, which puts an incredible strain on their personal lives and health, according to AARP. About 40% of caregivers are male, a proportion that has been steadily increasing over the past decade.
Julia Yarbaugh, a former local TV reporter in Chico, California, had long planned for her mother to come live with her when she could no longer live on her own. But even with careful research, planning and preparation, fostering was an ongoing juggling act. Yarbough worked long hours, often into the evening. Then she would go home to help her mother, who had multiple chronic health problems.
Finding home care aides, local caregiver support groups, or services geared toward older women of color in rural parts of the state was beyond difficult. “I thought I was fully prepared,” Yarbough said. “It was still kicking my ass.”
Yarbug left journalism. She founded Keeping it Real Caregiving, which provides caregivers with real-world information and shares their stories.
“It’s not just about getting your parent a doctor’s appointment,” she said. “It’s about intimate care, like bathing them or keeping them clean after using the toilet, because they have limited range of motion so they may not be able to do it themselves.”
There aren’t enough practical supports and structures for caregivers, especially those related to the mental and physical health of caregivers, according to Jennifer Olsen, executive director of the Rosalynn Carter Institute for Caregivers, in our health care system. The services available usually depend on the diagnosis of the person receiving care, rather than the abilities and needs of the family member providing their care.
Employers can also do more to support family caregivers, Olsen said. But caregivers are often reluctant to discuss their family situation at work, at least not until it affects job performance. He believes employers need to be more proactive in establishing policies and communications that support these increasingly common scenarios without losing quality employees in the process. “Turn it around,” he suggested. “Take the initiative rather than waiting for the caregiver to come to you when they are in crisis.”
When Yarbough discusses foster care, she makes sure to put a name and a face to each story. “Tell stories that resonate,” he said. “Discuss what’s really at stake.”
From millennials to the workplace, housing to tech, almost any story can be a caregiver story.