The preceding is an excerpt from Finding the Right Words: A Story of Literature, Grief, and the Brain, published by Johns Hopkins University Press. Copyright 2021. Used with permission.
I have returned to Berkeley to mourn the loss of my father— in Judaism, this is called sitting shiva—more than twenty years after he died. To say goodbye to him in the way I know best, which is to study, think, and write a book. I have always known that, unlike many memoirs about Alzheimer’s disease, the book I would write about my father was one I wouldn’t write alone. Having spent thirty years studying literature, I know that only someone who knows a field inside-out can explain its complex ities in a way that can be understood by all readers. One year at the Memory and Aging Center (also known as the MAC) at the University of California, San Francisco (UCSF), learning about neurology would give me some familiarity with the science, but not nearly enough to write about it with the kind of expertise and clarity I believe is most helpful. Furthermore, I wanted a coauthor who could not only explain Alzheimer’s disease but also share his knowledge with families dealing with other kinds of neurological diseases, such as frontotemporal demen tia (FTD) or Lewy body dementia. Last, the physicians who accompanied my family through the years of my father’s ill ness weren’t much help. On the one hand, it was the 1980s, and they didn’t know much about the disease; on the other hand, they had little interest in hearing how our family was manag ing. I wanted to write this book with a leading neurologist at the cutting-edge of scientific research, so he could explain to me what was happening to my father thirty years ago. That he would listen and care so much was icing on the cake.
Thus, I asked Dr. Bruce Miller, founder of the MAC, to write a book with me about dementia so I could tell the story of my father’s Alzheimer’s disease, and he could explain the science of dementia to people who may not have a degree in neurol ogy. The argument of the book is implicit in its coauthorship: that an interdisciplinary approach to Alzheimer’s disease and other dementias is the best way to help families dealing with a life-changing diagnosis. Families are best cared for by shar ing with them the emotional challenges as well as the scientific ones. This is best done by integrating the perspectives of a fam ily member and a physician. Through this process, the family member gains knowledge about the neurology, thereby becom ing more informed, confident in advocacy and caregiving, and the doctor learns about the family’s experiences, thereby becoming more empathic, better able to understand their emo tional needs.
What Bruce probably didn’t know when he agreed to write this book was that I was also asking him to sit shiva with me. How could he, when I didn’t know I was sitting shiva? But his empathic embrace of my story and his willingness to use it as a departure point to help others dealing with dementia has allowed me to recover. To recover from some of the pain of watching my beloved father become unglued and to recover memories of him. Not lost on me is the irony of claiming that as my father lost memory, I did too.
The epigraph of my first book, written while my father was still alive, went like this: “For my mother and father, whose memory is safe in mine.” Turns out, I could not keep Dad’s memory safe, but I could keep my memories of him safe. In a strange twist of fate, though, I kept them safe by hiding them from myself. They were too precious, and I was too broken. I couldn’t trust myself with them. Remembering the bad stuff was excruciating and remembering the good was even worse. Like fossils trapped in amber, they hardened and became stuck. I was stuck. This year, with Bruce, I found the strength to remember them. This book records those memories and tells the story of finding them.
As anyone who has lost someone knows, the end of official grieving doesn’t mean the end of grieving. That said, my year of sitting shiva—in Berkeley reading books, at UCSF studying neurology—has given me the chance to get it right. I can now remember my father without wanting to dissolve, and I have even retrieved some very happy and funny memories along the way. They are no longer fossilized. They have come alive in a series of chapters about diagnosis, language, spatial dis orientation, behavior, and memory. While Bruce explains the neurology behind the clinical presentations I describe, he also reflects upon his career as a doctor and the values that have driven his commitment to understanding dementia and listen ing to families. This has helped me immensely, and I believe it will help others. Having remembered my father, having kept my word that he is safe in the pages of this book, I can at last say goodbye to him.
Cindy Weinstein is an English professor who wrote a dual memoir with Dr. Bruce Miller, neurologist at UCSF, about her father’s early-onset Alzheimer’s. She describes her father’s illness from the point of view of a daughter and lover of literature and Bruce from the point of view of a son and neurologist. In chapters about diagnosis, word-finding, spatial disorientation, and behavior, the last chapter is about — memory — and she is able to recover memories of my father before he became sick. Learn more about Cindy at https://weinsteinandmiller.com