The journey

You and your spouse are on this journey together, and apart.

You stand by his side, but his path is not the same as yours.

Lewy Body Dementia is a disease built for two, as I had often observed over the years.

When your spouse is stricken, you and s/he are both in it for however long it lasts. My dementia journey with Burt lasted about five years.

My journey by Burt’s side was not the same as his. He was experiencing it very differently than I was. He was the one stricken by this illness. I only had the privilege of caring for him. He had to suffer through its many symptoms. I only had to cope with the symptoms.

It is a desperate fact that I couldn’t do anything to change what happened.

It is a desperate fact that I could not do enough to make his journey easier.

I was on the outside of Burt’s disease. He was inside it.

It didn’t take his delusions nor his hallucinations to make it clear that LBD was different for him than it was for me. I was on the outside, he was on the inside.

I could only stand by him and do the best I could to improve his quality of life.

It is a happy fact that I did do my best to make his journey the best it could be.