All The Lovely Suffering We Cannot See

On Alzheimer’s disease, euthanasia, and the many misguided attempts to flee from an embrace of life in this world. This is a story about my father and me—and hope.

How lonely we are when we don’t enter into and share another person’s pain...

“Lift not the painted veil which those who live
Call Life” — Percy Shelley, Sonnet (1824)

I’ve spoken to a handful of people over the past 18 months who, after they learn that I’m caring for a father with Alzheimer’s disease, say some very strange things. They often communicate messages which reveal one or both of the following premises:

1) they believe that people with advanced dementia are no longer “themselves”, or no longer “there”;

2) they believe my dad would probably be happier if he were dead, and so would I.

The honesty would almost be admirable were the content not so vile.

I realize that many people simply don’t know how to respond to suffering and death, or even how to respond to bad news, and I have compassion for that. I have also been tongue-tied; I have also said my own hand-picked variety of stupid shit when someone drops a bombshell on me, like the announcement of a terminal disease. But when I have done so, my metaphysical view of the world was always at least…