This is the story Originally reported by Sara Lutterman 19th. Meet Sarah and read more of her reports on gender, politics and policy.
Helena Josephson retired from a career in university administration in 2017 due to autoimmune disease and chronic pain. He has an ice pick headache, which is exactly what it sounds like — a sudden, stabbing pain in his head. He has arthritis in his hips.
Last year, Josephson, 55, brought her mother Rohana Miller home from the emergency room. Miller is 80 and has dementia and diabetes, among other conditions. She moved in with Josephson last year, when it became clear she wasn’t able to safely manage her own diabetes.
Josephson often felt he was “running on fumes”. Taking time to rest, take pain medication, or go to physical therapy appointments is often not possible. Her mother struggles with routine tasks, such as getting dressed in the morning or eating. Sometimes, he gets confused and angry. Josephson is constantly monitoring her mother’s insulin. The sound of the monitor wakes Josephson up at night, not because Miller’s blood sugar is low, but because he’s gone over the sensor.
“I really try not to look as bad as I feel. People have no idea,” said Josephson, who lives in Canaan, New Hampshire.
Josephson’s experience is far from unusual. According to a Recent reports From Brandeis University’s Lurie Institute for Disability Policy, 36 percent of caregivers are disabled themselves. This reality is rarely discussed outside of support groups and is often not considered when developing care policies.
“There’s a lot of assumption that people with disabilities are just recipients of care,” said Lauren Bixby, a research scientist and one of the report’s authors.
Bixby and her colleagues found that not only were people with disabilities carers, they were more likely to be carers than people without disabilities.
“It definitely disrupts the narrative about this kind of one-directional way that care works,” Bixby says.
Joe Caldwell is director of Brandeis University’s Community Living Policy Center and co-author of the report. She also worked to develop a national strategy for family caregivers during the first Trump administration. The final report of the National Strategy contains limited guidance for carers of people with disabilities.
“When we think about strategy, is it really inclusive of caregivers of people with disabilities? And how can it be more inclusive?” Caldwell said. It’s not just that some carers have a disability: policy needs to be shaped so they can access the same services and support available to everyone else, she said.
Jacqueline Revere, 39, is a caring influencer who lives in the same house where she and her mother grew up in Los Angeles. She cares for her mother and grandmother through dementia, documenting their journey on Instagram and TikTok via @MomOfMyMom, as her mother started calling her “Mommy.”
Revere’s grandmother died in 2017 and his mother died in 2022. Since then, Revere has dedicated her time to creating The Care Den, a supportive community for other caregivers, and learning how to take care of herself again.
In his video stutters respect and stuttered from childhood; “I stutter more when I’m under more stress — and of course, dementia caregiving is incredibly stressful,” she said. “You’re forced to pivot all the time. When I first moved home, I thought about applying for disability, because my stuttering had gotten so bad I could barely communicate.”
He had to make phone calls and doctor appointments. He needs to get access to accounts and pay bills.
“When I had to take my mother and my grandmother to doctors’ appointments, you only had to give a certain amount of time to express what was going on. If you stuttered most of the time, the doctors would lose patience or they would ask if you could write it down. I had to adjust the way I communicated to do what I said.”
Besides writing down the questions, he sometimes pre-recorded them for the doctors and played them when he was in the office with his mother or grandmother. He often feels humiliated in a way that makes it more difficult for his family to support him. “There’s this perception that we’re not that smart,” he said.
Neither Josephson nor Revere was surprised by the prevalence of disabled caregivers. They met many like themselves.
“In my dementia caregiver (support) group, most of those caregivers are spouses, so they’re usually much older. Some of them have cancer and their partner with dementia doesn’t really understand that,” Josephson said. This is reflected in the data, which shows that people with disabilities are much more likely to be over 65.
“There’s a level of understanding of the extra weight you carry when you have a responsibility to take care of yourself as well as take care of others,” says Revere.
It is also complicated when cognitive disabilities such as dementia are involved, as the caregiver may forget or not realize that the family member they are caring for has a disability.
Josephson’s mother doesn’t always remember that Josephson is disabled.
“Sometimes he forgets there’s anything wrong with me,” Josephson said.
Other times, though, his mother notices that Josephson is in pain. “She’d be like, ‘Oh, are you hurting? You should take better care of yourself'”
Josephson will continue to do what he can.
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This post was Previously published on 19.
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