By the time I started relating our journey through the pages of this blog, Burt and I had been at it for over three years.
I described what transpired in the early days but I know it was from the perspective of distance. I feel like the beginning is the subtlest but least documented aspect of the dementia journey.
There is so much that requires us to adjust when we’re just starting. I know that I was engrossed by the details and demands of daily life.
I often forgot just how ill Burt was because of this distraction. In early stages, Burt also seemed to exhibit traits from his healthier state, once the meds kicked in.
His first symptoms, or the ones I noticed in March of 2020, were extreme.
I think I have said that Burt dived into Lewy Body Dementia with both feet.
Burt suffered hallucinations, was in the throes of Capgras, and also delusional. After the diagnosis, he started a miracle drug, donepezil, which rid him of the symptoms.
It worked well for many years. The delusions and hallucinations came back at the end, but he was pretty clear for some 3 years.
We were lucky that his delusions and hallucinations were benign.
As Burt progressed and neared the end, he often didn’t know where I was. I was with him but he felt that he was alone. On one occasion, when I said, I’m here, I will always be with you, we’re going through this together, his eye’s widened. It was a moment of recognition that I am grateful to have had.
this is our life 