Surfing the Waves of Alzheimers: Principles of Caregiving That Kept Me Upright
Renée Brown Harmon, MD (2020, Many Hats Publishing)
Renée Harmon lived a perfectly charmed life, until her husband started losing his mind. Harvey and Renée went to college together, then through medical school and residency, getting married after the first year of med school. They went into family practice together near Birmingham, Alabama, where they had both grown up (and where I went to high school with Harvey.) The family grew with the practice; they worked out ways to alternate staying home with the two little girls, and later to trade off school pickups and after-school activities. One would cook, the other wash dishes; one would make breakfast, the other lunch. Renée made time for reading, piano playing, and quilting; Harvey trained to run marathons.
In December of 2009, while the family was vacationing in Costa Rica, she discovered that Harvey's memory and cognition had developed big holes. He got lost on the trails of the resort, and he couldn't follow instructions, because he couldn't remember them. Renée was concerned, then alarmed, and started doing online research. Wasn't forty-nine too young for Alzheimer's? It's rare, but not unheard-of. And what would they do if he couldn't practice medicine? That first year of waiting, watching, and testing was difficult, not least because Harvey was unwilling to talk about it. He did submit to testing at the University of Alabama at Birmingham; the results were awful and Renée let the state board of medicine know, leading to a sudden, devastating retirement.
Renée describes this book as a teaching memoir, in the sense that she is passing on what she learned over the next eight years, in ways that should be helpful to all kinds of caregivers. The chapter headings tell quite a lot of the story in themselves: "If You've Seen One Case of Alzheimer's, You've Seen One Case of Alzheimer's;" "Put On Your Own Oxygen Mask First;" "Enter Their World;" "Acknowledge Your (Ambiguous) Grief." Each chapter closes with Practices for contemplation, whether that be through journaling, or through conversation with a counselor or support group. It's potentially difficult emotional work; the memoir's through-line makes it clear that Renée experienced lots of ups and downs.
In the first place, she couldn't discuss her loss with her life partner, because he was protecting himself from thinking about it (or, maybe, that kind of self-awareness was the first thing to go.) She had the wherewithal to build a robust support team: Harvey's medical team; legal and financial experts; counseling help and a caregivers' support group; and the people she hired as caregivers and companions for Harvey, both before and after he went into residential care. With experience, she became more willing to ask for and accept help with simple, day to day affairs as well: who'd like to go with Harvey to walk the dog? Who'd like to help him cook, as long as he was able to wield a spoon? Who'd like to sit with him in church, while Renée played keyboards with the ensemble there? Letting people help, when they were so willing, turned out to be a mutual gift.
Of course, Alzheimer's is incurable, and fatal. We follow Harvey and Renée through his forgetting how to shower and dress, and his gradual retreat into silence. She had good and bad experiences with nursing home care, especially during the period when he was strong, and strong-willed, but not aware of why he was being asked to do things: "Imagine yourself waking up every morning in a hotel in a foreign country where you don't know the language. Now imagine that a stranger walks into your room, and in the native language, tells you that he is there to give you a shower and change your clothes. As this stranger starts to disrobe you, what would you do?" What's termed 'resistance to care' is entirely predictable, though it often presents the challenge of keeping both patient and caregiver safe.
She kept hearing, 'Renée, you are so strong!' "I guess I am, but what other option was there? I wasn't going to run away. I didn't cry in public often, so most people didn't really know how devastating it all was to me. And I had to be strong for our daughters. They were so young. And for Harvey. I couldn't very well dissolve into tears when his fate was so much worse than mine." She got good help, she took good care of herself, and she always led with love. In memory of the smart, kind young man Harvey was, I'm surpassingly grateful.
Here's more of Renee's story: https://www.reneeharmon.com/media/
Any Good Books, October 2020