Caring and Grieving at the End of Life
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Jessie Drew-Cates
Jessie cared for her husband, Billy, until his death in 2025.
Billy was first diagnosed with Parkinson’ s in 2016. Medications didn’ t help him much, but exercise did. He rode a stationary bicycle four or five times a week. He loved reading and was very engaged with sports( especially the Buffalo Sabres). Some of my favorite moments took place during our daily ritual: at 4 p. m., after Billy’ s nap, we would sit down together with a beer or tea and talk.
In May 2025, four months before Billy passed, we took a cruise together. Billy saw his brother at a stop in Georgia, and friends from high school at a stop in South Carolina. Those friends drove hours to see him; it was a very meaningful experience. When we got back, I asked Billy what else he wanted to do. He said,“ I’ ve just done it.” It was clear that he’ d seen the people he wanted to see— the people who he cared about— and that he was ready.
On the cruise, Billy was walking independently. By the end of the summer, he declined rapidly. We were fortunate to connect with a wonderful neuropalliative care team who supported Billy through the last months of his life. It got to the point where he could barely chew, swallow or suck through a straw. His words were garbled and difficult to understand. He lost his hand function and could no longer use the computer. Then he lost his eyesight and could no longer read. That was the final blow.
Billy and I had talked about his death. Billy chose how he wanted to die. It was a very personal decision, and not a decision everyone can make. There’ s dignity in choice.
I’ m a retired rehabilitation and neurology nurse practitioner; caregiving is built into my DNA. I still feel like I didn’ t do enough. We tried everything: every medication and multiple physicians, but there was nothing we could do that would make his life better.
After Billy died, I gave a speech at a local Parkinson’ s group about end of life. I’ ll share the same advice here: Do not do this alone. I was surrounded by people: Billy’ s daughter, our grandson, long-term care aides, faith leaders. The care partner needs to have their own support system in place.
Billy knew that I was exhausted. He knew how tired I was trying to take care of him, and I think that was part of his decision. I still feel his presence in the house; it will probably never be gone. I miss him like crazy.
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