Mary Lou Falcone

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 chapter from the perspective of one person or another 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 accounts 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 the book’s favour 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 inordinate amounts 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 faucets producing voices 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.… (altro)