Writer and musician Tanuja Desai-Hidier lives in a multigenerational home in Maine with her aging parents and two teenage daughters. Between online schooling and “hematologists, nephrologists, cardiologists, rheumatologists, dermatologists, gastroenterologists, colorectal surgeons, labs, and all kinds of stuff,” nearly everything falls on Desai-Hidier. “Nothing can be hidden from me, because I’m managing everything,” she says. “On my bluer days, I feel extremely squeezed and scattered at the same time.”
When Katie Schlott’s divorced mother was diagnosed with a rare autoimmune disease which left her in pain and fairly incapacitated, Schlott took charge of her care: In conjunction with lawyers, she sold her mother’s house, applied for government assistance, and found her mother long-term care. “To say this was difficult is just an understatement,” says Schlott, an Illinois-based mom of two. “But I am privileged. I could pay for people to help me figure out these systems. And so many people have to navigate it alone. It’s so broken and so frustrating.”
Seattle-based Olivia Chiong balances care at a distance: her mother, in Las Vegas, recently had a stroke. Chiong and her wife are in the process of obtaining guardianship of her mother, as well as power-of-attorney, so they can make hard decisions about the future of her care, while also raising two young children. “We flew there for five days, but because my kids are still in school, we had to come back,” she says. “I’m trying to manage things from Seattle, trying to file court paperwork and figuring out, ‘When do we go back? When will she need us?'”
In March 2020, Lori traveled to Florida to help Audrey move into an assisted living facility, a plan that was immediately upended with the arrival...