"I Didn't See It Coming" - Interview with LBD caregiver Mary Lou Falcone

Mary Lou Falcone became a caregiver when her father had a massive stroke. She was 10 years old. The experience prepared her for the day, many years later, when her husband, illustrator and 1950s rocker Nicky Zann, was diagnosed with Lewy Body Dementia (LBD). 

In her memoir, I Didn't See It Coming: Scenes of Love, Loss, and Lewy Body Dementia, Falcone talks about what it was like to have an international career, to be thought of in their social circles as "the golden couple," and then to face the cruel reality that the love of her life had an incurable, fatal disease.  

Falcone talks candidly about three of the most challenging aspects of caring for a spouse with dementia, especially LBD: incontinence, violence, and hyper-sexuality. 

She also shaes the challenges she faced in writing the memoir, particularly when her second editor guided her to reveal the deeply buried emotions that resulted in this personal and poignant story, a winner of the 2023 NYC Big Book Award "Distinguished Favorite" in the category of Caregiving. 

Falcone also shares an overview of the differences between LBD and Alzheimer's Disease, why it can be difficult to get a diagnosis, and her ongoing work as an advocate for LBD awareness. 

The interview portion of thie episode was originally recorded for a show on YouTube called "Page 1." Here's the link to see the video version of this podcast episode. 

The video version on YouTube includes a PSA created to honor my husband's memory. In the PSA is a photo of me and my husband at a wedding reception in 2017. Several hours after that photo was taken, he was rushed by ambulance to the ER. He had choked on a piece of meat. 

The PSA also includes a brief video I took one morning while my husband and I were hiking around a local reservoir. 

For more info in Mary Lou Falcone and her book, see her website: MaryLouFalcone.com