I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia – Mary Lou Falcone – 2023 –
In this encompassing love story, Mary Lou Falcone (known as ML) recalls the love of her life, her late husband Nicky Zann (1943-2020), a gifted musician and talented professional artist/illustrator who lost his life during the Covid-19 pandemic from conditions related to Lewy Body Dementia (LBD). Zann’s beautifully done illustrations were generously included and add to the appeal of the book.

In recalling the extensive story of her childhood, ML turned to music at an early age to ease her anxiety that was related to helping care for her (young) father after a debilitating stroke, her step-mother worked three jobs to support the family. In the 1960’s she was accepted at the Curtis Institute of Music and taught briefly at college before launching her own business in the music industry. When ML met Nicky Zann (1973) he was married to his second wife, and they were a popular power-couple in the art world.
As a teen, Nicky Zann was under professional management singing and playing the piano opening at concerts for Patsy Cline, Jerry Lee Lewis, Johnny Cash and Jackie Wilson. In 1965, Zann’s priorities shifted towards art, where he studied architecture in college. He worked for advertising agencies and illustrated comic books, posters, etc. and enjoyed oil painting. According to ML, Zann’s artwork is posthumously represented by Swann Auction Galleries.

By 2017, after being together for over thirty years and following their civil marriage nuptials, ML accompanied her husband to the hospital where he was given a battery of tests. A neurologist was alarmed by his cognitive decline that included falls, extreme fatigue, and visual and auditory hallucinations. His diagnosis was severe: Lewy Body Dementia with Parkinson’s Disease, there were no cures. However, the focus of the story is less on LBD and more on the couple’s past and present personal lives, and how ML coped and cared for her husband during his terrifying illness. The book will be of greater interest to those who contributed excerpts to the storyline and those who knew this couple. With thanks to East End Press via NetGalley for the DDC for the purpose of review. (3.5* GOOD)

The publisher’s description of Mary Lou Falcone’s book as “a memoir of love, loss, and Lewy body dementia (LBD)” caught my attention. I was interested in learning about the unique challenges in caring for a partner with a less common and less-known form of dementia than Alzheimer’s, one related to Parkinson’s disease. LBD is the same condition that drove comedian Robin Williams to suicide. Williams had been aware of his Parkinson’s diagnosis—he had the classic shuffling gait, a tremor in his left hand, and the characteristic “Parkinsonian mask,” which made his face appear blank and emotionless due to lack of control of facial muscles. However, only an autopsy would explain the psychiatric symptoms he experienced: the significant anxiety, visual hallucinations, delusions, and paranoia. Lewy bodies (abnormal clumps of protein that develop inside nerve cells affected by Parkinson's disease) were widespread in Williams’s brain, and they were particularly evident in the region of the amygdalae, the brain’s major emotional processing centres. Falcone’s husband, Nicky Zann, a versatile and charismatic artist who died of the condition in 2020, had some (but not all) of the same symptoms as Williams. In Zann’s case, a definitive diagnosis did not require an autopsy, but it certainly took time.

I was disappointed that Falcone’s book was so taken up with content other than her experience with LBD. In fact, the author only addresses her husband’s condition in the last third of the memoir. A dynamic and high-powered performing-arts publicist who in her heyday represented several big-name classical musicians and opera stars, Falcone appears to have been more committed here to providing a record of her own development, family history, and accomplishments. The publisher’s description mentions that friends and family “share” their perspectives on her resilience in the book, but that isn’t true. What the reader actually gets is chapter after another from the perspectives of different people in Falcone’s life. Most are hymns of praise to her talents. The glowing testimonies from family members, teachers, friends, and famous performing artists highlight her superior communication skills, caring, ingenuity, loyalty, and integrity. These are not “shared”—i.e., actually written—by the author’s friends and family at all, but rather by Falcone herself. I don’t consider that sharing. To give an example: the author adopts the point of view of her long-dead father who reflects on the unfair demands placed on his eldest child. He had experienced a catastrophic stroke in his thirties. It upended the lives of the Falcone family, forcing Mary Lou’s mother to take on three jobs and the ten-year-old girl to assume some heavy responsibilities. The major one was undertaking daily speech therapy with her dad. (This was a futile task given the degree to which Mr. Falcone’s speech centres had been ravaged.) Since the stroke left her dad disabled and unable to communicate verbally, an account from his point of view, along with the cliché-ridden and sometimes saccharine “recollections” of others who died long before this memoir was even written, appear to be what Falcone imagines these people might have been thinking about her. Perhaps they’re based on compliments she received. The impressions are unfailingly positive and flattering, and while they give the reader a sense of the author’s character and achievements, they have little to do with the purported subject of the book: providing care for a family member with Lewy body dementia. I have no particular interest in the world of classical music or opera—and even less in the career trajectory of a publicist!—so this book really missed the mark for me. As for the taking on of the personae of others in order to praise oneself: I’ve never before seen such an approach in a memoir, and I hope I never encounter it again. I found it jarring, forced, false, strange, and off-putting.

What I can say in favour of the book is that it is attractively designed and decorated with Nicky Zann’s distinctive and stylish art. Additionally, the last few chapters finally fairly effectively address LBD, which I thought was supposed to be the memoir’s actual focus.

In his mid-seventies, Zann’s initial LBD symptoms were non-specific. They included forgetfulness, fatigue, and some erratic behaviour. Zann was discovered to have coronary artery disease, and there was some hope that triple bypass surgery would provide a remedy. It did not. After the surgery he experienced severe hallucinations. It was convenient to blame these on anesthesia, but over the next 12 months Falcone noted a slew of other complaints: hand tremors (while awake and asleep), dreams that seemed real, halting and erratic speech, high levels of anxiety, and the inordinate amount of time required to complete simple tasks. Writing a cheque, for example, took 20 minutes. Four months after Zann received his diagnosis of Lewy body dementia with Parkinsonian aspects (in 2019), it was taking him two hours to shower and dress. In time, auditory and visual hallucinations increased. Zann heard voices coming from faucets and pillows emitting music. Falls increased, as did hours spent sleeping. Bowel control and appetite declined.

Falcone emphasizes that no two cases of the condition are alike and that LBD is often misdiagnosed as Alzheimer’s, Parkinson’s, or a psychiatric disorder. Her best, but perhaps least surprising, piece of advice is for caregivers to link up with a dedicated support network. Given the variability of the symptoms, what emerges from this book is that those who care for such patients need to be observant, flexible, and adaptable. One thing Falcone is brave and frank enough to comment on is the sexuality of LBD patients. She is clear that she had limits in this area and Nicky had what amounts to telephone sex with some old flame to satisfy very real needs.

In the end, I Didn’t See It Coming shed some light on a condition I wasn’t well acquainted with. However, I’m doubtful that it’s the best place to start if you want to find out about Lewy body dementia. There’s just way too much other stuff you have to get through first.

Thank you Netgalley for the ARC of this book. The author did such an amazing job telling her story. I can't even begin to imagine the struggle she endured. I applaud her resilience and hope. The kindle copy of this was in terrible condition and make it difficult to read.

I Didn’t See it Coming was a very timely read for me as a friend’s husband has been diagnosed with Lewy body dementia. I was engrossed in the day to day progression of this disabling disease on poor Nicky. It was so heart wrenching to read. I so appreciated all the information I was able to glean about LBD by reading this book.
I read this on my kindle and I did find it frustrating for about the first half of the book as the title and chapter heading were frequently interspersed and repeated within the text which interrupted the flow of Mary Lou’s memoir. At times the font was so close to the background and I was unable to change the settings to adjust for that. I think it was meant to denote who was telling that particular section of the story. I did struggle with trying to determine who was telling several parts of her story.
Their lives together were so very very special and I was in tears as she struggled with coming to terms with the rapid progression and his fading away, but most of all when she was expected to deal with “the other woman”. I hope writing this memoir deal with her tremendous loss of a great love. So sad that it happened during Covid which truly limited her ability to seek more support and help. An eye opening read for sure.
Many many thanks to Mary Lou Falcone and NetGalley for affording me the opportunity to read an arc of this just published book. Four stars for the day to day passages and the information and 3 for the memoir - 3 1/2 stars.

I received an ebook from Net Galley for review, the format of which didn't work well on my Kindle. The odd page breaks and ever-changing formatting made it difficult to navigate through the book. While that doesn't influence my evaluation of the contents of the book, I also found the non-linear storytelling difficult to track at times. Jumping back and forth between voices made it difficult to determine exactly who was narrating certain passages. The most poignant part of the book was, of course, Falcone's retelling of the day-to-day difficulties of watching her beloved lose all his faculties, and the challenges of caring for him as he slipped away bit by bit. This is something many of us fear as we get older, both becoming the person with the fatal diagnosis, as well as possibly becoming the one thrust into the caregiver role. I thought she was incredibly brave and committed to undertake the journey on her own with no other caregivers.

I received a copy of this in exchange for my honest review. Thank you NetGalley.

Wow. This book was raw and heartbreaking. I went into this not knowing much about LBD, and I left with a whole new outlook on life.

I can't imagine how difficult it must have been for her to experience this and become a caretaker for her own husband.

What a beautiful but heartwrenching story.

We go on a journey through time with Mary. After a childhood of helping care for family members.
She is only dealt another ordeal when her husband health declines. She express how it felt and how she tries to overcome things.

I really appreciated Mary Lou Falcone sharing this book, it does a great job in helping the caregiver for LBD. I learned a lot about the disease and learning about resources about this. It was well-written and I appreciated getting to read this.

"I Didn't See It Coming" by Mary Lou Falcone is a book that has the power to change lives. From the very first page, the author captures the reader's attention and offers a thought-provoking analysis of the uncertain terrain of life. The book is a fantastic guide for anyone struggling to overcome obstacles or navigate their way through difficult times.

One of the most compelling aspects of the book is the author's candid and honest approach to sharing her own experiences. Falcone's personal stories and relatable anecdotes add a depth and richness to the narrative that make the book all the more enlightening.

The author's conversational tone is engaging and compassionate, and her insights are always grounded in practical advice. "I Didn't See It Coming" provides a wealth of strategies and tools for coping with life's twists and turns, making it a valuable resource for anyone seeking to lead a more fulfilling, stress-free life.

Overall, "I Didn't See It Coming" is a powerful and thought-provoking read that is both inspiring and informative. Falcone's wisdom and experience shine through on every page, and readers are sure to come away from the book with new insights into how to handle unexpected roadblocks on the path of life. This book is a must-read for anyone who wants to take control of their destiny and learn how to navigate the unpredictable journey of life with grace and confidence.