Finding the Right Words for Love, Loss, and Alzheimer’s with Cindy Weinstein

Finding the Right Words for Love, Loss, and Alzheimer’s with Cindy Weinstein, Eli and Edythe Broad Professor of English at the California Institute of Technology and an Atlantic Fellow for Equity in Brain Health.

Dementia changes so much. Memory. Language. Expressions. Roles within a family. And for the people who love someone living with dementia, grief can begin long before death. We can find ourselves missing someone who is still sitting beside us, trying to make sense of what has changed while holding tightly to what hasn't. And sometimes, we don't even have the words for what we're experiencing.

My guest today, Cindy Weinstein, has spent much of her life exploring those words. Cindy is a professor of English at the California Institute of Technology, where she has built her career studying and teaching American literature. She is also the daughter of Jerry, who was diagnosed with early-onset Alzheimer's disease in his mid-fifties, when Cindy was just twenty-five.

Decades later, she returned to that experience to write Finding the Right Words: A Story of Literature, Grief, and the Brain with renowned neurologist Dr. Bruce Miller. To write the book, Cindy immersed herself in neuroscience through the Global Brain Health Institute, bringing together something we don't often get in one place: the lived experience of a daughter, the perspective of a literary scholar, and the science of what was happening inside her father's brain. Today, that work extends beyond the page. Cindy leads Keeping Each Other Company: Caregiving and Grief, a support group through Hilarity for Charity, where she creates space for caregivers to talk about the grief, loneliness, and complicated emotions that can be so difficult to share anywhere else.

And that's really where we're going today. We're talking about love, anticipatory grief, memory, neuroscience, and what happens to a relationship when someone you love begins to change. We'll explore why certain moments in caregiving seem to freeze us in time, what understanding the brain can give us, and why grief may not be something we're meant to fix or even "get over." Because maybe finding the right words isn't about having a perfect way to explain any of this. Maybe it's about giving ourselves and each other language for an experience that can otherwise feel incredibly lonely.

Cindy, I know how much of your heart and your dad you have shared through this book, and I’m so grateful for the way you’ve allowed us into your story. Thank you for trusting us with it, and for being here today.

Listen to our episode HERE.

To learn more about Cindy and her work at https://www.professorcindy.com/

Author with Dr. Bruce Miller of Finding the Right Words: A Story of Literature, Grief, and the Brain (Baltimore: The Johns Hopkins University Press, 2021), winner of Memoir Magazine grand prize. Available as an audiobook and in a Chinese translation courtesy of East Normal University Publishing. Korean translation forthcoming from Almond Publishing.

About Cindy Weinstein

Cindy Weinstein is the Eli and Edythe Broad Professor of English at the California Institute of Technology and an Atlantic Fellow for Equity in Brain Health. She has written several books on US literature with a focus on the nineteenth century. Most recently she wrote, with neurologist Dr. Bruce Miller at UCSF, Finding the Right Words: A Story of Literature, Grief, and the Brain (Johns Hopkins University Press, 2021), in honor of her father, Jerry, who died of early-onset Alzheimer’s. It received a 2022 Memoir Prize for Books. She teaches classes on “The Career of Herman Melville,” “US Literature through the Short Story” and “Poe and his Afterlife.” Currently, she is writing “Always, Nevermore: The Unending Death of Edgar Allan Poe,” under contract with Johns Hopkins University Press, and “Essays in my Garden: A Memoir,” which continues her interest in brain health. Her outreach activities around dementia include speaking at senior residences, in Alzheimer’s Disease Research Centers (ADRCs), and in health humanities programs. She is also leading a Hilarity for Charity monthly support group, “Keeping Each Other Company: Caregiving and Grief.”

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