By Jennifer Randazzo, Pennsylvania, USA
When my dad was diagnosed with Lewy Body Dementia 18 years ago, we were initially told that he had two terrible diseases — Parkinson’s and Alzheimer’s. He began to display cognitive, sleep and behavioral symptoms that eventually led to a diagnosis of Lewy Body Dementia (LBD). In 2003, little was known about LBD and few people had ever heard of It. For my dad, it was being stuck between two realities — one where the mind is lucid, but the body is failing; and the other where the body is strong, but the mind fails. The mind and body could no longer exist as a cohesive unit. My once intelligent, kind dad was struggling to understand basic concepts and showing behavior changes that can only be imaginable by someone who has experienced that decline firsthand.
I lived five hours away and it was hard to see the toll that this disease took, not only on my dad, but everyone who loved him. My mom, the consummate caregiver, balanced taking care of my dad while raising my two youngest brothers and working full-time. She became the primary caregiver and provider. It wasn’t easy, but she handled it with grace and determination. My three siblings helped too. They were young and sacrificed so much of their teenage years. For me, it was a long, painful goodbye, losing a bigger piece of him with every visit home. For my kids, it was watching Grandpa change physically & mentally. The special bond they shared was challenged as my children became afraid of one of the people who loved them most.
At the time, there were very few resources available to help my family navigate Lewy Body Dementia. Resources for kids were non-existent. My kids were experiencing something that most adults can’t even comprehend and I could not find one resource to help them understand and process it. Grandparents play an important role in a child’s life and that bond is mutually beneficial. According to the LBD resource center, as many as 1.4 million people suffer from LBD in the United States alone. If you think about how many children are touched by Lewy Body Dementia, that number grows exponentially. The connection between grandparent and child needs to be supported during this challenging time. I wrote Grandpa & Lewy to serve as a resource that my kids never had. Not only are kids learning what Lewy Body Dementia looks like, but they have a roadmap that helps them feel empowered.
Lewy Body Dementia is reported to be the second most common form of dementia. In my opinion, it is the most devastating, yet most people have still never heard of it. My hope is that Grandpa & Lewy will not only help children who are faced with loving someone through Lewy; I hope that it will also help raise awareness of this terribly devastating disease.
About the Author: 
Jennifer Randazzo is a mom, wife and lover of life. She resides in Bucks County, Pennsylvania with her husband and three children. After watching her father battle Lewy Body Dementia, Jennifer was determined to raise awareness and provide a resource that her family never had. Grandpa & Lewy is her first children’s book, but there are plans for more to come. Through her writing, Jennifer hopes to encourage children to handle adversity with patience, kindness and positivity.
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2 Responses
Jennifer, I welcome the opportunity to read and review your book for the Nana’s Books Foundation. Our mission is to provide Books on Alzheimer’s, dementia and other disabilities to public libraries and students in Title I schools. In our first two years we have delivered over 5,600 Books to over 2,800 students in six schools and their neighboring public libraries.
Hi Dennis. Thank you for reaching out. That would be amazing. I love what Nana’s Book Foundation is doing to raise awareness and get books into the hands of our future doctors, scientists and caregivers. What a wonderful initiative. Please let me know if there is anything I can do to help 🙂