I am Gretchen Duffy

ALS took my mother from us on August 27th, 2019. It was a mere 355 days after her diagnosis. Four months later, I’m still in shock that it even happened. My mother was a recently retired pediatrician. She was a woman who graduated medical school in an era when only 20% of new doctors were women. She dedicated her life to medicine, only to be faced with a diagnosis for which the medical community could do precious little. She was a single mother who valued her independence and the life she built for herself, which made her fate all the more cruel. At the time of her diagnosis, I was 17 weeks pregnant with her third grandchild. This woman was born to be a grandmother, and the time she spent with my children was the most alive I’ve ever seen her. Though our hands were full, my husband and I knew what we had to do. It was September. I rallied my family, and with some tremendous support, laid out our plan. My family would sell our house, we’d help my mother sell her house, we’d find a new house suitable for her care, complete any necessary renovations (bathroom, etc.), and we’d all wake up together in that house on Christmas morning. Everyone told me I was crazy. For the record, we pulled it off. We sold two houses, bought and renovated a new one, and she moved in with us in mid-December. We did wake up on Christmas morning under the same roof. It would be her last Christmas. The first doctor we met with predicted she’d have a slower-than-average progression of disease. I often feel anger when I think back to that because she was only in that house for eight months before she died, ravaged head to toe by ALS. It started with her legs, then her arms, then her speech and swallowing, and finally, her ability to breathe. I wish I could say she was one of those patients who took her diagnosis in stride, rallying her troops to tell her story and make a difference despite a bleak prognosis. Instead, it wrecked her. She was humiliated, and despite our best efforts, I often feel we failed her — or maybe that we failed to beat the beast of ALS that robbed my mother of such joy in her final chapter of life. I had no idea what we were in for when we assumed the role of her primary caregivers. Nothing could have prepared me. It was all-consuming, and it tested me as a daughter, mother and wife. Even with tremendous support of family, it was all-consuming. I can’t unsee what I witnessed happening to my mother. Watching her die haunts me. I’m just now reaching a point where I can talk about what happened. For months, it was just too raw. But you can’t go through the experience of being an ALS caregiver without it fundamentally changing who you are as a person, and I’m ready to channel this horrible experience into something positive.