By Jana J. Monji
Pasadena Weekly Contributing Writer
The book “Finding the Right Words: A Story of Literature, Grief and the Brain” covers something that will touch everyone — death and senior moments.
Someone will grow old and grow forgetful, and so will we, but it’s a matter of to what degree and how we will handle the inevitable.
Caltech Eli and Edythe Broad professor of English Cindy Weinstein and neurologist Bruce L. Miller will virtually discuss their book at 5 p.m. Thursday, Sept. 9.
Weinstein was a college graduate student at UC Berkeley when she learned that her father had early onset Alzheimer’s at 58.
“When I first moved to Berkeley, my parents were living in New Jersey, where we had lived all our lives,” Weinstein said.
“They were on the cusp of a really big transition and moving to Florida. Eventually, all of my father’s official time with the disease he was in Florida, and I was in Berkeley.”
Weinstein was “extremely close” to her father and recalled, “I was crushed.”
Her two older siblings were still living on the East Coast. Although she thought of transferring to a program on the East Coast, that didn’t seem practical. Knowing her father would have wanted her to continue her degree and become a professor, Weinstein continued schooling on the West Coast (1982-89).
“My sister is almost 9 years older, so she heroically did much of the caregiving for my father and for my mother, as well who was caregiving for my father,” Weinstein said. “My brother handled much of the legalistic, money sorts of things, and he’s six and a half years older than I. I was like a deer in headlights. I did what I could and traveled back to the East Coast when I could.”
When her father was diagnosed in the 1980s, very little was known about Alzheimer’s and dementia. Although Weinstein had the idea for the book over a decade ago, it took time for her to find the perfect writing partner.
Miller is at the UCSF Weill Institute for Neurosciences and the director of memory and aging. He started as an English major, and although their tastes in literature weren’t the same, they hit it off.
Miller brought an interdisciplinary program to Weinstein’s attention: the Global Brain Health Initiative (GBHI).
In 2015, the Atlantic Philanthropies granted $177 million to UC San Francisco and Ireland’s Trinity College in Dublin to create GBHI, with a goal of “creating a generation of leaders worldwide who have knowledge, skills and drive to change both the practice of dementia care and the public health and societal forces that affect brain health,” said Christopher G. Oechsli, president and CEO of the Atlantic Philanthropies, in a 2015 article for UCSF.
Taking a sabbatical from Caltech, Weinstein learned science. With her grasp of literature and science, her book is, in many respects, a holding of shiva for her father.
The five-chapter book begins with “Diagnosis” and a subchapter by Weinstein (“Hitting the Fan”), which is then followed by a subchapter (“The Detective Story”) with Miller explaining how dementia has become an umbrella term.
Miller wrote, “Considering the time, it is not surprising that Cindy’s father never received a comprehensive assessment. In 1983, standard of care for the evaluation of cognitive symptoms was a brief visit with a physician, 2 to 5 minutes for the history and assessment, followed by a cold goodbye and good luck.”
Miller described his background and how now the medical establishment has “changed regarding the recognition of the serious burden faced by caregivers and the patient.”
In the second chapter, “Word Finding,” Weinstein examines words (“Call Me Ahab”), first discussing the novel “Moby-Dick” before looking at how her father, a man who attended Rutgers University on the GI Bill, began to lose words, fumbling around searching the dark corridors of his mind, which, in real life, led to an expedition for croutons.
According to Weinstein, her father’s story was a real rags to riches. He ran an electric supply house in a time when Home Depot didn’t dominate the national landscape. But it was her mother who gave her a love for language. Her father’s fall into the oblivion of dementia went until his death in August 1997, over a decade after Weinstein learned of his diagnosis.
Taking the crouton crumb, Miller builds upon the food culture that gave us croutons before leading us to the medical reality behind “Where Dementia Decides to Dance.” He defines the main differences among the three variants of primary progressive aphasia.
So much has changed since then. For Weinstein, she was studying Melville’s “Moby-Dick,” and, in the book, she recounts how she returned to the novel and how life changes gave her different perspectives.
There are other literary references, such as “The Scarlet Letter.”
“This corner of my mind had a very different relationship to literature,” she said. “It didn’t seep into my professional way of thinking about literature, but it gave me a different way, different identifications that one can have with literature. Less like an approach and more like what literature started meaning for me, a container for a lot of energy, a lot of grief, like an escape.”
Yet literature and cinema can give us understanding of events. In the book, Miller discusses how the understanding of dementia has changed and even how most people carry around memories that are false or distorted, but with Alzheimer’s disease, “false memories become more common, even leading to delusional endorsement of events that never happened.”
Cindy Weinstein and Bruce L. Miller discuss “Finding the Right Words: A Story of Literature, Grief and the Brain”
WHEN: 5 p.m. Thursday, Sept. 9
WHERE: via Zoom