The Gene Guillotine: An Early-Onset Alzheimer’s Memoir is a 306-page book recounting the development of early-onset Alzheimer’s disease in my mother at age 48. As the book opens, I relate Mom’s initial symptoms, denial of the disease, diagnosis and acceptance, and the death of her main caregiver: her husband, my father.
Mom’s brisk walk leads her under the watchful eyes of Abe Lincoln, out of Lithia Park, past the steps leading to the Shakespeare Festival complex, and straight to the garbage can. Muttering angrily, she hurls the sunglasses into the wrought iron can.” Read more book excerpts.
The memoir continues with Mom’s debilitating memory loss, struggle for autonomy, placement in care facilities, anger management, the discovery of the gene in our family, and her decline into death at age 58.
The book concludes with a reflection on my life, the impact of these events on my future, and an exploration of my struggles with the fear of having inherited the familial gene that leads to Alzheimer’s disease.
The book is written in chronological order and in the present tense to best capture the intensity of the feelings in each moment, as well as my thought process at various ages.
I began keeping notes on Mom’s progression in high school. In the year before she died, I utilized audio recordings to quickly document incidents, to preserve Mom’s voice, and to capture our interactions with her disjointed made-up words. One month after she died, I began writing this book.
I am grateful for the people around me who have helped me through this journey: the loved ones in my life ; my writing coach, Lisa Alpine, for her honesty, patience, belief in my book and emotional support; Amberly Finarelli of Amberly Finarelli Editorial Services, for her professional edits; and Lucas Balzer of Soma Design Group, who has provided technical support and an artistic eye in photography, business cards, and book cover and website design.