Like the two-step

QuickQuickSlow: it’s not a dance, my darling. Wish it were.

Looking back, the blur of our journey as we trudged, loped and galloped along is confusing.

Is it surprising that an illness characterized by confusion would cause confusion? Create it for the travelers as they travailed its inconsistencies? The one who is well as much as the afflicted?

Burt’s confusion was a natural by-product of the Lewy Body Dementia from which he suffered. Mine was the fog of care and the overwhelm of events and information.

We all know how this ends, I opined in a support group. It does not end well. Heck, friends, its start isn’t propitious either. There is enough grief to stretch and stay the course.

My mission today was to parse if the end was quick or slow. It was both expected and a complete surprise. So, I guess it’s not a fudge to claim it was both slow and quick.

As it turns out, my retrospective on this excursion takes me back to a mere four months prior to Burt’s passing. In late October, he wasn’t participating as he had and hallucinating more.

For his surprise birthday party, he was more out of it than in. He didn’t take pleasure in seeing people as he used to. Our outing on November 10th was the last one we would manage.

He got up to sit in his big brown chair for his friend M’s visit a few days later. It was an effort and he asked to return to his bed. We talked by his side but it was pretty clear that Burt wasn’t sure who we were. After that, he.was mostly bedbound. 

He tried to get up for a trip to get pistachio ice cream, but could not. Even I, reluctant to catch the decline, saw it and offered to bring him some.

I had every hope that, this being Lewy, Burt would ride the roller coaster up and go back to better days.

In mid December, I went to sign a Molst for end of life decisions. His doctor and I agreed to proceed as if he were on palliative care.

Burt seemed comfortable. Bed care has some issues of its own, like pressure sores, that we addressed. I held onto my hope that Burt would get out of bed to go for a walk; it was slimmer but still active.

These were the days when Burt held more conversations with his imaginaries. He would often interrupt me, ever so politely, to see what they had to say.

Then came what I have dubbed the last four days. On Friday, he stopped grabbing and holding our hands. His grip was so strong! before that. His hands were reaching and he wasn’t speaking. Just gesturing in the way of a supplicant. I knew.

Someone had introduced me to the term actively dying. I knew that that was what this was. Burt was actively dying.

The fact that it took him four days to find his exit is both a long and a short time. I am relieved that he found his way. I am sad to have lost him. I no longer travel his journey with him. Burt is no longer by my side as I continue mine.