LBD Story: Herb’s Visitors | Lewy Body Dementia Association LBDA

LBD Story: Herb’s Visitors

Dad was such fun; even Lewy body dementia didn't take that sparkle from his eye right up until near the end. He passed away January 10, 2011. It was a slow progression, almost seven years from its noticeable onset, although in hindsight, I did see things now which I didn't pick up on at the time.

His last three years were spent in a care home; thankfully, I lived close enough I could go see him regularly. It was usually harder to think about going than the actual visit was. His hallucinations were very vivid to him, and quite frightening as they were usually people that he thought were coming in to do him harm.

Then, in the last year before he did, that seemed to ease off. It was his siblings (deceased) who he thought were visiting him. He would talk to them and truly believe they were there. He quite enjoyed those visits! At first, this disturbed me, but then I accepted that it was best to just be glad he was enjoying it. He died at age 86. Herb was loved.

Written by: Val

Whether you are a caregiver or have been diagnosed with LBD, we know you are facing a new reality now. Your days may be filled with a host of worries, frustrations or sadness. And we also know that just when you least expect it, you can find yourself speechless from moments of love and tenderness or see something outrageously funny because of LBD.

By sharing your personal LBD stories, you can bring comfort and laughter to other families just like you. Visit to upload photos and personal stories of how LBD has affected you or someone you love.