Finding the Right Words
I am honored to write this column for the Much Love, Lili newsletter and want to use this opportunity to talk about why I wrote Finding the Right Words: A Study of Literature, Grief, and the Brain (Johns Hopkins University Press, 2021) with Dr. Bruce Miller, neurologist at the University of California, San Francisco, about my father’s early-onset Alzheimer’s with the logopenic variant, which means that he was younger than 65 (that’s the early-onset part) and word-finding (the logopenic variant) was the first symptom.
He was diagnosed with Alzheimer’s in the mid-1980’s and died twelve years later. The neurologist who diagnosed my dad said he had Alzheimer’s. At that time, the precision diagnosis given to me by Dr. Miller was not available. It took me a long while to find the strength to revisit those many years when he was in his 50s and I was in my 20s. Through an amazing stroke of good fortune, I met Dr. Bruce Miller and was able to study neurology in 2019-2020 with him and several other extraordinary neurologists, psychiatrists, geriatricians, and nurses in the Global Brain Health Institute, an interdisciplinary program at UCSF’s Memory and Aging Center (affectionally called the MAC). There, I learned about the benefits of an early and precise diagnosis, the importance of caring for caregivers, and the indicators of a brain getting sick. I knew none of this before that year. I thought Alzheimer’s was confined to issues of memory. The hippocampus, a part of the brain essential to memory, is often where the first “assault,” as neurologists call it, takes place, but there is so much more to this disease than forgetting a word or repeating a story. Alzheimer’s often begins this way, but its impact goes beyond words to include mood, behavior, spatial certainty. So much of what makes a person who they are. What I learned from writing the book and since its book is what I’d like to share with you.
I learned the following: sleep issues, hearing issues, and mood changes should be taken seriously and dealt with. Sometimes insomnia is simply insomnia but sometimes it is what doctors call a “prodromal” indicator. The brain may be having problems. Same with hearing. Sometimes hearing difficulties can be addressed with hearing aids but sometimes those difficulties might indicate a problem with cognition. Hearing aids, whether hearing loss is age-related and not brain health-related, should be used. Not being able to hear can lead to social isolation, another “modifiable risk factor” for dementia. And by the way, dementia is the umbrella term for several diseases that include Alzheimer’s Disease, frontotemporal dementia, vascular dementia, Lewy Bodies Disease, Chronic Traumatic Encephalopathy, Parkinson’s Dementia, and others. Mood changes should also be confronted head-on. If you or your loved one is experiencing depression or becoming apathetic, get that checked. Changes in mood can be another prodromal symptom but it may not be. It is worth checking.
My father had all these symptoms but at the time we didn’t know what they might indicate and there was always an explanation. He never slept well. He was distracted. He was retiring and moving out of the house our family had lived in for decades and so of course he was depressed. How I wish we had known then what we know now. How it might have eased some of his difficulties (but sadly could not have and still can’t make them go away) and how this knowledge would have helped my mother, his primary caregiver. And all of us who loved him so.
In addition to these somewhat practical interventions (CPAP machine, hearing aids, anti-depressants), here are some other things I wish I had done. First, for my father. He loved our dog, Tocca, and I believe that if he had an opportunity to spend time with dogs, he would have been happy. At least for a few moments. Dogs get it without words getting in the way. He loved Frank Sinatra, and I believe that if we had created a playlist for him, he would have been happy, at least while listening to the music and maybe even remembering the lyrics. What I wish hadn’t been done (yes, I’m shifting to the passive voice). He was medicated into oblivion, and I think at a certain point the disease and the medicine converged so it was impossible to know which one was causing what symptom. He loved basketball and I wish we had set up a hoop in his room so he could, while still able physically, play ball.
Second, for me, but first I need to back up. I share the following as a cautionary tale. Not to lay blame. Lord knows my mother did everything humanly possible at a time when most doctors weren’t helpful, and most nursing facilities had no idea what they were doing. The doctors all but said goodbye and good luck. The idea of caregiving, of needing to care for the caregiver would take years to become part of our cultural vocabulary and even though it now is, the structural challenges of caregiving remain entrenched. I can’t imagine how devastated she must have been when she found out why my father was getting lost on everyday errands or unable to do the math that had throughout their marriage kept the checks from bouncing. Despite her attempts to protect me from just how bad things were, I knew she was undone and in denial about it. It was only after writing Finding the Right Words, which happened many years after my father died and a few years after my mother died, that I decided to join a caregiver group. Mostly women comprised it and through them, I heard my mother’s voice. I heard the pain she had tried so valiantly to hide. Her day-to-day struggles. Her desperate attempts to continue living in the face of my father’s tragic dying. She loved him with everything she had, and she loved me too.
Here goes. My mother did not want my father to know he had Alzheimer’s because she was convinced that if he could remember that long enough, he would have taken his life. I believe she was right about that but wrong not to tell him and wrong to tell us we couldn’t either. Much guilt and regret lies in not having had conversations with him about his disease. I wish I could have cried with him, could have told him how devastated I was, could have acknowledged — as many times as he needed to hear it – his pain. In other words, could have been honest about what was happening. This regret falls under the category of things not said. There were moments when I am certain Dad wanted to talk about his illness. I suspect that even if my mother had instructed me and my brother and sister not to say the “A” word (though eventually we did but by that point, he definitely couldn’t hold it in his mind), I very well may have punted.
Now that I’ve written this book with Dr. Miller and have a chance to talk to people who have dementia or who have a loved one with dementia, I want to say “say it.” Say whatever you need to say before the verbal lines of communication are cut off. The tactile ones, the love will always remain (and be recognized though without words) and that is another thing I learned. I also want to say “feel it.” Denial helps no one and nothing, and at a certain point it will catch up with you. Writing can help with denial. If it’s on the page, it’s there and it happened. If you don’t like to write, you can always speak into your phone. You can join a support group. Or see a therapist. Or listen to one of the amazing podcasts on dementia. I would venture to guess that very few people, if anyone, can do this alone. It isn’t worth trying.
I wrote Finding the Right Words to share with readers what I wish I had or hadn’t done when my father was sick. It was important to me to understand as much as I — an English professor and not a neurologist – could about what was happening to and in my father’s brain and in my own as I grieved and still do. I wrote it with Dr. Miller so readers would have access to his neurological expertise, and because I didn’t want to go back to those years all by myself. It was so lonely, and I couldn’t write about it alone. Dr. Miller stayed by my side and gave me the knowledge, the empathy, and the company I needed. We hope our book gives these to you, too, if you find yourself loving and losing someone with dementia.
In Solidarity,
Cindy Weinstein, Ph.D.
Author with Dr. Bruce Miller of Finding the Right Words: A Story of Literature, Grief, and the Brain (Baltimore: Johns Hopkins, 2021), winner of Memoir Magazine grand prize.
ABOUT CINDY WEINSTEIN Ph.D.:
Professor Cindy Weinstein was born and raised in Verona, New Jersey. She received her B.A. in English and American Literature from Brandeis University, and her Ph.D. in English from UC Berkeley. She is currently the Eli and Edythe Broad Professor of English at the California Institute of Technology. In 2018-19, she was an Atlantic Fellow in the Global Brain Health Institute based at UCSF and Trinity College Dublin, where she studied neurology with an interdisciplinary group of scientists, artists, social scientists, and physicians. During this time, she worked with neurologist Dr. Bruce Miller on Finding the Right Words, which describes her father’s early-onset Alzheimer’s, her grief, and their enduring love. It has been awarded the Memoir Prize for Books. Since its publication, she has given talks at several Alzheimer’s Disease Research Centers, Medical Humanities Centers, and Senior Residences, as well as appeared on podcasts, including The Nocturnists, Love Conquers Alz, and AlzAuthors: Untangling Alzheimer’s and Dementia.
Book Website & Related Resources:
Neurological Illustrations, Family Photos and Memorabilia Featured in Finding the Right Words..
Video Interview: Hosted by Susie Singer Carter and Don Preiss – LOVE CONQUERS ALZ with Cindy Weinstein, Ph.D. who co-authored a book with neurologist, Dr. Bruce Miller
Amazon Link to Finding the Right Words: Finding the Right Words: A Story of Literature, Grief, and the Brain by Cindy Weinstein (Author), Bruce L. Miller
Recommended Additional Resources:
(There are many excellent books about Alzheimer’s; here are just a few)