Where you're at is *totally* understandable. It's natural to hear the word "dementia" and think that it's a short, nasty brutish ride to a horrible place. I was there too.
The thing is, DLB responds to a comprehensive management strategy. There are scores of examples of people who are "better" now than they were at the time of diagnosis, and progress remarkably slowly year to year. It's not easy, but there is always *something* that can be done to improve functioning or ease suffering, and that's not like other dementias at all.
Once things get stabilized, then you can work on incremental improvements - some of the things have been small; in others, you can't tell that Cal has DLB anymore. We know it won't last forever, but it's pretty amazing while it does last.
Before you do anything else, look at some of the case reports in this paper:
Seeing that people got *better* from a state at least as bad as my LO changed the game for me - it went from being an issue of keeping Cal safe and comfortable through an upcoming crisis leading to death, to helping him have as rich and full and long of life as he wishes - a major sea change.
We're here. Ask us anything - from stupid questions about coping with some symptom that seems trivial to the Big Existential Questions - someone is here who cares.