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
