My father said, “I will not go gently into that good night but rage, rage against the dying of the light”. My father said, “They shoot horses, don’t they?” My father hated hospitals, wouldn’t go visit his friends there, and didn’t trust doctors, even though his daughter and son-in-law are a palliative care doctor and cardiologist respectively. My father checked his blood sugar religiously.
My father had the same family doctor for fifty years. He lived in a different province than me, but we talked every week and visited regularly. But not enough. Not enough for me to notice whatever changes the family doctor was seeing that made him order an MRI.
My father was diagnosed with a rapidly progressive multi-focal dementia.
When he got sicker, after two emergency room visits, my parents moved in with me, so that I could help care for my father. He was confused and angry a lot of the time. There were a few precious moments; reading to him as he drifted off, listening to favorite songs as he nodded and tapped the table in time. There were some funny times too, like when he demanded spinach for supper. He had always hated spinach but humoring him I gave him a big bowl and much to our surprise he ate it all. There were many sad moments too, when wet and naked he couldn’t or wouldn’t get out of the shower and I had to ask my twenty year old son to help me move him, and when he soiled himself and as I cleaned him he yelled “stop, I’m hitting you, stop!” and I knew that even though the door was closed my fourteen year old could hear.
He was an engineer, a teacher, a reader, and a deep thinker. It was horrible enough that he lost his intellect. As he got worse, he wouldn’t let us care for him physically. His fingernails grew long and dirty. His breathe fetid. I was lucky to know that there was another option, a good option. I had a colleague who was the doctor at the palliative care unit. I called him and he helped.
In the palliative care unit, things were still miserable. There were still many horrible moments. He yelled some and he cried some and he was terrified. But he was clean and most days, using a special lift, they were able to get him out of bed into a wheelchair. We took him to sit in patches of sun by the windows.
In his last weeks, he was never without one of us. My mother and I took shifts. Seven months after the family doctor called and told me the results of the MRI, my father died with my mother at his side.
What I learned, what made my father’s horrible decline as good as it could be, was that if at all possible: have a family doctor for at least a few decades, try to live within a twenty-minute drive of a palliative care unit, ask for help.