Like most Millennials, I didn’t expect to join the realm of caring for aging parents for at least another decade. That all changed on Christmas Eve 2019, when my mom suddenly became disabled from the neck down.
I rushed her to the hospital, where it took three weeks of intense testing, pain, and fear to get a diagnosis: neuromyelitis optica, a rare autoimmune condition that can cause paralysis, blindness, and death. My mom, who developed Lupus in her early-30s, has always been proactive with her care, but this diagnosis changed the game entirely, as my mom could no longer live independently. And so, with two kids under age 6, I became a member of the Sandwich Generation at age 36.
As my mom endured rehab, and then acute rehab, I became her POA and raced to create a care plan. She worked so hard on regaining her strength while keeping her spirit, hope, and light. Meanwhile, I navigated her work leave, submitted insurance claims, found an elder care attorney to navigate Medicaid, coordinated care with five different specialist doctors, packed up and sold her condo, and hired a consultant to find a permanent location for her to live and receive care. Just figuring out my mom’s care plan quickly became a full-time job. My employer and team generously gave me the gracious gift of time, guilt-free from work, in early 2020 so I could get her situated.
Only eight weeks after her diagnosis, COVID-19 struck hard, and everything shut down. I started working remotely, my kids stopped going to school, and my family hunkered down at home in Oak Park, Illinois—terrified for ourselves and my mom, who was living at the rehab center and severely immunocompromised. I needed help on a level that nearly every person in my life couldn’t comprehend, because they still had independent parents and hadn’t yet lived through a life-altering event like this alone, let alone during a pandemic.
I searched far and wide to find support with little resources. As a last resort, I went to Facebook, and found a private, local group with “Sandwich Generation” right in the title. I requested to join as soon as possible. As I read their posts about navigating Medicare, finding a safe and supportive environment for their loved ones, and honestly just voicing their exhaustion and frustration, I knew I had found real resources in an unconventional place. Together, they responded as I posted about these topics, and they helped me learn about …….