In the public eye

This occurred to me today:

It is not fair that I have violated Burt’s privacy in describing our journey. 

I have shared his delusions with you; I have lamented his decline; I have exposed his hallucinations; I have described his terrors and his joys.

It should be enough that his Lewy Body Dementia diminishes him.

I should not be laying bare how  his pernicious disease steals who he is.

Yet I am compelled to do so.

In part, it’s because the writing serves me well. The caregiver has to matter, too. I don’t mean that in a glib way.

Our journey, as I describe it, is entirely from my perspective. I hope that is of help to others on this side of the experience.

Burt has, alas, lost agency in his life.

He also lost the self-knowledge he once had about his plight. I am grateful he is no longer aware of Lewy.

His innocence over his confusion adds a blissful improvement to his quality of life.

I think if he knew, if he understood that he would want to participate in sharing just a bit too much.