GRANT #428:

Grandpa and Lewy

12/07/2020
What Can We Tell The Kids? Here’s A Story That Might Help

Jennifer Randazzo had a hard time understanding the changes when her father was diagnosed with a disease she’d never heard of. Chances are you’ve never heard of it either, and if you have, it’s probably because it was in the news after the death of actor Robin Williams, who’d been unknowingly living with it.

Jennifer knows when around a million and a half Americans have Lewy Body Dementia, a lot of children must be puzzled and frightened and sad about the changes they see in someone they love. So she wrote a book for those kids. “Grandpa & Lewy” is a story that will help children understand what’s happening, and even give them a sense of power and control by helping their loved one do or remember the things they used to.

Did you know that LBD is the second most common cause of dementia? With LBD, memory and thinking completely break down over time. There can be physical symptoms, too, that are just like in Parkinson’s disease — the two are actually related. What’s really unusual is that your loved one can even show a brief glimmer of their old self and then, as quickly, be gone again. As Jennifer shares, the family LBD experience is “a long and painful goodbye.” Nothing can ease the pain. But maybe this book will help make it understandable.

Our grant will help with publishing and distributing the book. Jennifer hopes it will help you explain all kinds of difficult things to your kids, helping them to be compassionate, because everyone’s going through things we can’t always see or understand. We think that’s awesome.