#ourLewyJourney – this is our life

Forgotten?

Early in our journey when Burt was in many ways deepest in the throes of Lewy Body, he didn’t recognize me. He’d ask me frequently who I was. I would answer with that neutrality that hides any disappointment. From my answers, he assumed that he had several wives, all named Tamara. From our care team, IContinue reading “Forgotten?”

Those last months

Today, thanks to those of you who’ve read my archive of writings in the last few days, I was led to revisit some blog posts from January 2025. These were documenting the last days of our journey. I know that now, so my re-reading was extremely poignant and tearful. I am so grateful for thisContinue reading “Those last months”

Documented

The photos I display on every surface document Burt’s days with Lewy Body. Everywhere, there are pictures of him as the disease progressed and some of us at ballgames or on walks by the river. It’s a 10 to 1ratio. What strikes me in the pictures I snapped during our journey is the joy IContinue reading “Documented”

Here’s how it went

Here’s what happened. First, Burt seemed listless. That was unusual for him. I was out at the gym a lot and he was at home a lot. He had fallen and cut his cheek badly a year earlier. He had had a bout with never-explained double vision. That was a couple of years before. AndContinue reading “Here’s how it went”

Routines

It occurs to me that in the five long five short years during which Burt suffered at the hands of Lewy, we lived a lifetime of routines. We watched Lawrence Welk every week. We had television dates. For a while we went to the park all the time. We had a weekend outing every SaturdayContinue reading “Routines”