Helina Josephson retired from a career in university administration in 2017 due to autoimmune disease and chronic pain. She has ice pick headaches, which are exactly what they sound like — sudden, stabbing pain in her head. She has arthritis in her hips and is also a family caregiver like so many others with disabilities.

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 that she wasn’t able to manage her diabetes safely on her own.

Josephson frequently feels like she is “running on fumes” as a family caregiver. Taking time to rest, take pain medication or go to physical therapy appointments is often not possible. Her mother struggles with sequential tasks, like getting dressed in the morning or eating a meal. Sometimes, she 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 has low blood sugar, but because she has rolled over onto the sensor.

“I try really hard not to look as bad as I feel. People have no idea,” said Josephson, who lives in Canaan, New Hampshire, about her role as a family caregiver.

Josephson’s experience is far from unusual. According to a recent report from the Lurie Institute for Disability Policy at Brandeis University, as many as 36 percent of caregivers have disabilities themselves. This reality is rarely discussed outside of support groups and is often not considered when developing caregiving policy.

“There are a lot of assumptions that disabled people are solely recipients of care,” said Lauren Bixby, a research scientist and one of the authors of the report.

Bixby and her colleagues found that not only are disabled people family caregivers, but they are more likely to be caregivers than people without disabilities.

“It definitely disrupts narratives about this kind of one-directional way that care works,” Bixby said regarding common narratives about family caregivers.

Read the full article about supporting disabled family caregivers by Sara Luterman at The 19th.