For Cindy Weinstein, graduate school was a complicated time. Like many students, she was juggling the usual commitments of assignments, teaching, and research, but on top of that, she carried the burden of watching her father succumb to early-onset Alzheimer's disease.
As her father's condition worsened, she was faced with moving home to the East Coast to help take care of him or staying at UC Berkeley to finish her PhD. Knowing she was unlikely to complete her degree if she left California, she chose to stay.
It was a pivotal moment in Weinstein's life. Now, 30-some years later, she's writing a book to talk about that experience and to help make sense of what happens when Alzheimer's strikes a loved one. This fall, Weinstein, Caltech's Eli and Edythe Broad Professor of English, vice provost, and chief diversity officer, will join the Global Brain Health Institute (GBHI) as one of its 2018 fellows. There, she will work alongside doctors, research scientists, musicians, activists, and psychologists to develop a better understanding of how dementia affects the brain and how it affects society.
Weinstein's experiences in the fellowship will be rolled into a book she is writing on Alzheimer's. The book, Finding the Right Words: Alzheimer's, Literature, Science, which she is co-authoring with Bruce Miller, the A.W. and Mary Margaret Clausen Distinguished Professor in Neurology at UC San Francisco and co-director of GBHI, will approach the disease from three angles: the personal, the literary, and the scientific.
We sat down with Weinstein to discuss her book, the fellowship, and her experiences with her father.
It must have been difficult to watch your father decline during his illness. Can you tell us about it?
One of the challenges was that I was at Berkeley getting my PhD when my dad was diagnosed with Alzheimer's. Communication is hard enough when someone has this disease, and then when you're far away, how do you do it? I wrote letters to him several times a week, and he saved those, which is really touching because at a certain point, he couldn't read anymore.
I would also talk to him on the phone and, looking back, I realize these were symptoms but didn't know them as such at the time. Conversations would be very terse. My dad was never all that loquacious, but I know now he probably didn't understand a lot of what I was saying.
How did you make the choice between finishing your degree and moving back east to help with your father?
My parents, at that point, were in Florida, and I was thinking about transferring to Johns Hopkins to try and help them from Baltimore. I talked to my advisor about what to do, and he said, "You can't do both. If you're going to write this dissertation, if you're going to really be a professor, either do that, or take care of your dad." That was not easy to hear. I wanted to be an English professor ever since loving literature in high school, so I decided to stay at Berkeley.
How did that experience with your father shape your own adulthood?
It's probably one of the most formative experiences of my life. I was about 23, and when he was diagnosed, it was right around the time that I was starting to study for my orals exam, so I was reading from morning to night. It occurred to me that as I was reading a novel a day, he was losing a word a day. I think the novels I was reading were both an escape and also a way for me to think about the grief and suffering I felt dealing with my father. They were a container that I put my sadness into.
Can you explain the concept of your book?
I've been wanting to write this book for a long time, but at a certain point I realized that I wanted the book to be more than a memoir of trauma. I wanted to convey how important literature has been in my life. Because the complexity of literature has always informed my thinking about the world, I want to write a book that is a love letter to literature as much as a book about loving my dad.
And by virtue of being at Caltech, I realized I also want to write a book where I am talking with a scientist or a researcher about the disease that my dad had, and bringing together, in some way, a literary discourse and a scientific discourse. I sent Bruce a couple of chapters in draft. He really liked them, and he agreed to write the book with me, and then he said, "By the way, we have this fellowship that you might want to apply for. Do you want to learn some science?"
What will this fellowship entail?
I'll spend the first several months of the fellowship in a seminar series where we'll read about brain health from a variety of different disciplinary perspectives and then come together and talk about what we've read. After that, it will be like medical school. Bruce is going to be my mentor. I'll learn about his research and go on clinical hours with him and meet his patients. I'll also go to various labs around the UCSF campus where they're doing different kinds of Alzheimer's research. I'm excited because I get to be a student and I hope and expect that much of what I learn will make its way into the book.
What do you hope to learn?
I hope to be able to ask questions that hadn't even occurred to me in my early 20s about what was happening with my father. For example, when my father went golfing, and he aimed the club and the ball in the exact wrong direction. What was going on? Or what wasn't going on? If he didn't know what a word was, what was happening? Was he really close to knowing the word? I'd like to be able to answer those kinds of questions.
What do you hope readers will take away from your book?
I hope it will help people. I want them to know that watching someone you love losing their memory is an impossible situation. Whatever anchor they need to get through it, whether it's literature, or science, or bowling, or whatever, just do that, and if anything in the book is helpful, it will have been worthwhile.