Feeling Invisible, Many Disabled Caregivers Also Need Support | Nonprofit Quarterly | Civic News. Empowering Nonprofits. Advancing Justice.

Helina Josephson retired from university administration in 2017 due to autoimmune disease and chronic pain. She experiences ice pick headaches and arthritis in her hips. She brought her mother, Rohana Miller, home from the emergency room after Miller developed dementia and diabetes and could not manage diabetes safely alone. Josephson often feels like she is running on fumes and cannot reliably rest, take pain medication, or attend physical therapy. She monitors insulin at night, and her mother struggles with sequential tasks, sometimes becoming confused and angry. A Brandeis University report from the Lurie Institute for Disability Policy found that up to 36 percent of caregivers have disabilities and that disabled people are more likely to be caregivers than people without disabilities.

"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. 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." 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. 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 caregivers, but they are more likely to be caregivers than people without disabilities."

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