Caregiving and Marriage: How ALS Has Transformed Our Lives – “Rom & Tobin”

In 1983, I spent two years teaching English in Japan. Around 1984, my parents came to visit, and it was during that trip that I first heard about ALS. My mother and I were alone, and she mentioned that they were visiting family in Australia while they still could because my father had ALS. Clueless, I asked, “Is it deadly?” She replied, “It killed your grandfather.” I asked if it was genetic, and she told me they didn’t think so. My father’s ALS was limb onset, while my grandfather’s was bulbar onset.

In the fall of 1985, I returned to New York City and started attending Grace Church in Manhattan. There, I met Tom. From our first walk out of the parish hall together, we began a journey that friends at Grace lovingly referred to as “Rom and Tobin.” Our relationship blossomed, and we married in February 1987. Around that same time, my father’s lungs began to fail. I remember thinking I might need to bring our wedding to his hospital room.

Since then, Tom and I have shared a happy life together. We had one child and devoted ourselves to our careers. Our marriage has been blessed by closeness and passion. I often say, “I am the adored wife of a good man.”

In January 2024, everything changed when I received a genetic diagnosis of ALS. This diagnosis hit both of us like a tidal wave. Tom has been my unwavering support, with his questions ultimately leading to the correct diagnosis. Over the years, I’d collected a pile of other diagnoses—cerebral palsy, cervical and lumbar arthritis, asthma, essential tremor, cervical spinal stenosis. But this ALS diagnosis has brought a rapid cascade of losses, accelerating at a rate neither of us could have anticipated.

Since it’s Family Caregivers Month, let’s talk about Tom. Every day, he wakes up two hours early to care for me. He uses a Hoyer lift to help me to the commode, changes my diaper, and helps me dress before transferring me to my power chair. He measures out and serves my breakfast, which I’ve taken via a feeding tube since March. Tom manages this daily routine with the skill and gentleness of a nurse, even taking care of delicate areas like the site of my feeding tube, diaper rash, and bedsores.

Tom has become my rock, and I adore him more than ever. I depend on him completely since I can no longer stand or transfer on my own. We’re hoping to get an aide soon, so he has the freedom to leave me when necessary. The rapid progression of my condition has been staggering for both of us, but Tom remains by my side, steadfast and loving through every change. – Robin Brown