Surfing the Waves of Alzheimer’s
On a family vacation in 2009, Dr. Renee Brown Harmon felt the first jolt of fear.
How could her husband, Harvey, a highly intelligent physician, marathon runner and devoted father, be struggling to keep up with their guide’s simple instructions or unable to do the simple math to calculate their daughter’s age.
The fear and heartbreaking truth was confirmed nine months later when Harvey was diagnosed with younger-onset Alzheimer’s disease at age 50.
Soon after Harmon felt she had no choice but to inform the medical board board that it was no longer safe for her husband to see patients in the practice they shared. Suddenly forced to manage both the family and business they’d built together, she stayed afloat by leaning on friends, family and her faith through Harvey’s illness.
Part personal story, part instructional guide for caregivers, the book she wrote about her experience, Surfing the Waves of Alzheimer’s, is essential reading for anyone facing the tremendous challenge of caring for a loved one with memory loss. Each chapter ends with a different principle of caregiving and offers readers suggested best practices to bring greater balance to the role of family caregiver.
Learn more about the book here
When did you first decide that you wanted to write a book about your experiences? What were your motivations?
I actually remember that in my medical school interview I was asked to name three goals I had for myself outside of medicine. I named writing a book as one of those goals. I never felt I had a story to tell, however, until my experiences as wife and business partner with Harvey. I journaled throughout his illness as a way to give voice to my emotions out and to chronicle the symptoms he was exhibiting. In February, 2018, I casually told a friend that I thought I wanted to write a book. She took me seriously and held me to that expressed dream. I started small, writing the story of how I first knew something was wrong with Harvey’s cognition, then told that story on stage at Arc Stories. A month later, I was asked to speak at Alzheimer’s of Central Alabama’s yearly event, Alzheimer’s in Alabama. My only instructions were to speak for 45 minutes about Alzheimer’s disease. I organized my speech around caregiving principles, illustrating each with stories from our experiences. Because it was so well received, and because I knew I had a lot more material to pull from, I decided the time was right to actually put pen to paper (or fingers to keyboard). I converted that first story into a personal essay that was published in JAMA Neurology. That accomplishment validated my desire to write a book, so I kept going. Harvey passed away right at this time as well, so the energy I had been spending as a caregiver turned to writing. It was a way to process what we had experienced, as well as a way to honor him and our family. As I wrote, I realized that a larger audience would benefit from reading it. It was more than a legacy book; it would serve other caregivers as they struggled on the same journey as we had.
How did you decide to add in the material at the end of each chapter? How important was this practical advice to the book and your reasons for writing it?
Because each of the chapters is titled one of the caregiving principles that kept me in balance when I was caregiving, I felt they needed a bit more explanation to try to show that these principles could help in multiple situations. As a physician, too, I have always felt that education was one of my primary roles, so it came easily. Interestingly, the first professional editor that read my manuscript said that he skimmed those sections because the story was so compelling. When I asked if I should eliminate them, I was advised to leave it for readers who would find it helpful. Since the book has been published, I have had feedback from readers that these sections, and especially the accompanying practices, were indeed helpful. And I think that rather than practical advise, which to me means specific how-to instructions on caregiving, it’s more general guidelines and mindsets. Principles!
What did you learn about writing, publishing, and most importantly yourself in the writing it this book?
The craft of writing came fairly easily to me. I have written short pieces off and on before, so knew that I could do it when I had such a compelling story to tell. I began writing on my iPad mini, in coffee shops, finally graduating to a borrowed laptop once I was half-way in. I didn’t realize how much I enjoyed editing. I had to cut that original story down by more than half to meet the required word count limit when I submitted it to JAMA Neurology.
I learned quite a bit about publishing, using a book, The Book You Were Born to Write, by Kelly Notoras and a workshop she led. The most striking take-aways for me were: (1) Gone are the days when a new author could expect to find a literary agent or a publishing house that would be interested in your book. For someone to pick up your book, you need an already established audience or platform. No one is interested in a book if they don’t think they can sell at least 5,000 copies. As an exercise, I wrote query letters to about 50 literary agents, following each of their particular requirements, and heard back from only two. One eventually declined, and the other I bowed out on.
(2) Self-publishing has come a long way since the earliest “vanity press” days. You can self publish as a do-it-yourself project, hiring people to help you along the way with cover design, interior design, distribution, etc. Another option is Assisted Self-publishing, which is what I did—Girl Friday Productions in Seattle, WA. The company essentially held my hand through the process, doing most of the leg work, but always with my input. A third option is a hybrid model. These companies will vet your work, but you still pay for their help.
(3) The biggest change to come to publishing has been the advent of print-on-demand. This means that a self-published author no longer has to order a large run of books that then has to be hawked to potential buyers. If you buy my book from Amazon, the order goes to them, and they print your one copy according to all the specifications (they have a computer file of my book), then mail it to you. Same with bookstores. If you order one through your local bookstore, they send the order to the distributor that they use, that one copy is printed, then shipped to the store. This makes self-publishing much easier and cheaper. If you want to write a family history for your immediate family, no frills, and print 25 copies, you can! (4) All authors are expected to market their own books, even ones published by big publishing houses. (5) Editors are amazing! Ideally, you want at least four runs of editing–developmental editing, line editing, copyediting, and proof-reading, often multiple runs in each type of editing. Most people only know of proof-reading.
Putting the whole story to paper was transformational for me. I could see the whole in a much clearer way than I did as I was living it, moment to moment, or crisis to crisis. I was amazed at how well I had handled everything; while working full-time. But also some chagrin at my missteps. It felt brave to tell our story, and it was intimidating and scary to be so vulnerable. I learned that my capacity for loving Harvey was very deep. I was amazed to count all the people who had helped us along the way–naming them and telling how they came forward with offers of creative ways of helping us filled me with gratitude.
What was it like to work with Harvey in the practice?
Working with Harvey in a shared medical practice was wonderful. We had gone to medical school and residency together and just couldn’t imagine working separately. I recently read an article about two female pediatricians who are best friends and love working together. That’s the way is was for us! He was a trusted colleague just down the hall that I could consult with, and he with me. Because our training was identical, I trusted his input. People often asked how I could possibly work with my spouse, but the set-up of a medical practice is ideal. There was no way we could get in each other’s way. We worked separately, beside each other. Neither of us was “the boss” of the other. We split management roles at the office. I do suspect we talked about patients and the office rather too much at home, but it was our shared life.
How did the experience and arc of your career compare to your vision of what being a physician was like?
It’s hard to remember that far back, but I knew that I much preferred an outpatient setting to the hospital and envisioned a clinic practice. As did Harvey. We started the practice just a few years before the advent of hospitalists, making my decision not to make hospital calls a reality. I held out for a long time converting to electronic medical records. I don’t think anyone could have envisioned how the practice of medicine would be so completely changed by this. Being tied to a computer was not how I saw myself interacting with patients.
Harvey and I really did set up the practice to be shared, with the goal of growing it over time. When we set up the practice, we took turns in the office and at home with our young daughters. The plan was to increase our time at the office as the girls were in school for longer periods of time. The ultimate plan was for both of us to be full-time when our youngest turned 16. When Harvey retired due to Alzheimer’s disease, I instantly became a full-time, solo physician. Not in my original plan at all!
Have you been happy with your decision to retire?
Amazingly, yes! I loved being a physician. It was a great honor and privilege to hold space so intimately with patients, getting to know them and their families so well. I’m quite surprised at how easy it has been to walk away from the practice of medicine. I miss the people, but I certainly don’t miss the headaches (see above re: electronic medical records!) The emergence of COVID-19 just two months after my retirement makes my decision seem timely. I did initially feel some guilt at not being on the front lines, but am mostly grateful for those that are carrying on.