This picture, from my first birthday, is one of my favorite and most beloved. I was fortunate to be born on my father’s birthday, and we were celebrating our special day together. My mother and sister were there with us, gathered at my father’s hospital bedside. What I love most is that my father is looking right at me. I often stare at this photo and daydream about being back there with my dad, even for just a moment.
I know my mother’s perspective on this moment is much different than mine. Her husband had been diagnosed with Amyotrophic Lateral Sclerosis (ALS) a few months prior and had deteriorated rapidly. Navigating his treatment and care—and the cost of it all—was overwhelming. Just days before this photo was snapped, my father had been rushed by ambulance from our home to the hospital, where his doctors decided he needed to be placed on a respirator. It was during this hospital stay that my parents discovered that their trusted insurance would no longer cover his care at home. The only option their insurance offered for continuing care was immediate placement at a public hospital just outside of Chicago.
Together, my parents made the decision that my father should be at home with his family and that they would just pay out of pocket for his care. This was unchartered territory back in 1976; no ALS patient in Illinois had ever received respiratory care at home. But for my parents, it was important. My father needed to have as much time as possible to see us grow up, and we needed to have as much time as possible to know him.
My mother made it her mission to make the impossible happen, driven by her ferocious determination to make my dad feel comfortable and cared for. This included sourcing and interviewing specialized nurses to provide constant, round-the-clock care; ordering a hospital bed designed to improve circulation and prevent bed sores; and installing a generator in their bedroom to support his respirator. In a true testament to their professional calling, his doctors volunteered to visit Dad twice a day, every day. He received this extraordinary level of care for more than three years—precious years that belied the initial six-month life expectancy he had been given when diagnosed.
The financial cost of his care was massive, and years after my father lost his battle, my mother was still paying for it. While we knew it was the right choice to care for my dad at home, this forever changed us. We learned how critical is was to have good medical insurance. It was a cruel irony that we lived the same nightmare again years later, when my mother was battling cancer and faced her own issues with coverage, even with her top flight insurance.
