Fisherman on Snake River, Grand Teton National Park

I grieved for my dad’s shrinking skill set. He hardly seemed to notice.

Even as the disease took hold, my father, always someone who had systems in place, tried to outsmart it. About a year post-diagnosis, I found an enormous stack of notecards listing names of people he should know, including my mother, who died in 2003, and directions on how to do everything from turning on the TV to making coffee.

As I cared for my dad, I experienced—willingly, but with regret—the loss of my own independence and the loss of professional opportunities. I stepped off the leadership track of a professional organization, and I couldn’t share my disappointment with my dad because he would have been horrified that I relinquished that long-desired role because of his health. I took him with me on my business trips for the first three years after his diagnosis before I had to eliminate almost all travel, and when my dad was admitted to home hospice following a cardiac crisis in 2014, I stopped marketing my own business and declined most new clients. I made these decisions myself, but that didn’t blunt the loss at all.

My dad and I both lost the kind of future certainty that humans believe to be part of a normal life: What will we do tomorrow, next month, next year? Suddenly everything was in doubt, and I prepared for his final Christmas three years in a row before his death in 2017. I’m an only child, and so were both of my parents, so I also lost my past. I know a great deal of family history, but I lost my opportunity to learn more with my father’s inexorable slide into dementia.

Read more on Being Patient.

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