My final year at medical school began this fall with an unexpected flight home to Colorado. My mother has multiple sclerosis, and my sister, her caregiver for the past three years while I attended school in New Haven, was moving away to start a new job she’d suddenly gotten. There was no one else but me. I postponed my hospital rotation and canceled my board exam. I notified the school registrar, saying I was uncertain of when I could return and resume my studies.
Many people assume that having a disability guarantees access to a network of resources. Not so. Because my mother has an income of $36,000 from her divorce settlement, is younger than 65 and lacks a 10-year employment history, she is disqualified from receiving Medicaid (despite its expansion), Medicare and Social Security Disability Insurance. Her private insurance company, like many others, does not cover home care for daily needs. The median cost of this service, for help seven days a week, is more than $80,000 per year. Like many families, we could not afford full-time coverage. This posed a life-altering dilemma: One of us had to stay home to care for her.
With my sister away at college, I went first: At age 16, when our 43-year-old mother lost the ability to walk, my life shifted to sleepless nights and baby monitors. Her disease progressed swiftly; soon she could no longer stand, eat or bathe without assistance. For six years, I provided 10 hours of care every day.
I woke up at 5:30 each morning. After helping my mom with a bed bath, brushing her teeth and lifting her into her wheelchair, I would arrive late to school, breathless and racking my brain for an excuse to tell my English teacher. I accumulated enough pink tardy slips that, despite being a straight-A student, I received a letter threatening my graduation. I dedicated weekends to caring for my mother and missed class to make it to her doctors’ appointments. I quit the cross-country team after finally making varsity. I skipped prom. I turned down the chance to give the graduation speech. I lost my adolescence, and still my mother needed more support than I could give.
Even though I told no one about my home life, it permeated every decision I made. When I received my high SAT score in the mail, I cried tears of disbelief: I soon received a flood of invitations to apply to Ivy League schools and full-ride scholarship offers from out-of-state universities I longed to explore. I declined them all, knowing I had to stay nearby for college. To save money on home health-care costs, my sister and I spent weekends with our mother; that way, we wouldn’t have to hire extra help for the physical tasks that required two people. Midway through my sophomore year, we both moved off campus and back in with her.
I knew that even if I reached out for assistance, few resources were available: Most nursing facilities serve only seniors. And even if we found a facility for younger adults with disabilities like my mother’s, the cost of that care could exceed $10,000 a month. Home care is only slightly more affordable, at $6,000 or $7,000 a month. My mother is on a first-name basis with all the local paramedics — not because of medical crises, but because of the many nights when we needed another set of hands just to help her get out of her wheelchair and go to bed.