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By Renée Brown Harmon, MD
The world my husband, Harvey, embodied “before” was quiet, reflective, thoughtful, and responsible. Harvey’s world “after” became confused, sweet, chaotic, and reactive. His world didn’t change overnight. It shifted gradually, some characteristics lingering longer than others, morphing almost undetectably, like the lengthening of darkness as winter approaches. Because my memory was intact, and his was not, I could see the changes, where he could not always comprehend what was happening. It was like watching the slow evolution of a child’s growth and development, only in reverse.
Harvey was diagnosed with Alzheimer’s disease, at the age of fifty, in 2010. He succumbed to its complications in 2018. In those eight years, I experienced the various worlds that my husband inhabited. Because I am a physician, I tended to watch the changes clinically, ticking off which areas of the brain were systematically affected: memory, language, reasoning, visual-spatial.
But it was a strange world for me to enter as a loving spouse. It was easier to be a clinician and a caregiver than a wife. Although I still loved my husband, he was wandering further away from the man I had loved for twenty-five years, and towards someone unrecognizable to me.
The common approach to Alzheimer’s disease caregiving thirty years ago was to reorient the patient to reality. This only led to confusion and frustration on their part. A person living with dementia cannot understand reality, and it does no good to correct them. You must enter their world and try to see reality from their point of view. Easier said than done.
After one appointment with Harvey’s neurologist, I checked the clinical note on the portal and read the doctor’s description of Harvey as “child-like” in demeanor. And he was. He was friendly, eager to please, and agreeable. He was like a ten-year-old boy. If the physician saw him this way, maybe I could, too.
When I looked at my husband through this lens, I began to step away from my role of life-mate and became his playmate. We would never be equal partners again, but we could be together on a different playing field. It was just the perspective I needed in this ever-shifting world of dementia.
As the disease progressed, I couldn’t expect him to continue his usual household tasks, just as I wouldn’t expect a five-year-old to do laundry. But I could play with him as if he were a five-year-old boy. I entered his world—a world where there were fewer and simpler words, where colors and shapes might be more exciting than the story, where affection was found in holding hands, hugs, and a kiss on the cheek. We played catch, danced to the radio, and belted out the choruses of his favorite Jimmy Buffett songs. I read him stories, using my best silly voices.
In the last two years of Harvey’s life, the song “If You’re Happy and You Know It” became one of our favorite activities. He couldn’t sing with me, but his face lit up, and he clapped at the appropriate places. With time, those claps became a little off-beat, and then there was no clapping, yet his face lit up still.
Without being condescending, I found I could enter his world when it was appropriate. I was careful not to talk down to him, but just used simpler language and demonstrated with actions instead of words. It was a dance in a way, or a juggling act, knowing when to be friend, wife, or caregiver.
In his last months, Harvey’s face no longer brightened on hearing our songs, but I still softly sang to him while I fed him, or combed his hair, or held his hand, bringing us together into the world he then inhabited.
I never knew Harvey when he was a child, but I was privileged to know him as a fully embodied human being in all of his other worlds, and maybe I even got to glimpse the child he had been.
Isn’t this what we desire most of those closest to us—to journey through the world, whatever world that is, meeting each other exactly where we are?
Renée Brown Harmon, MD is the author of Surfing the Waves of Alzheimer’s: Principles of Caregiving That Kept Me Upright. Residing in Birmingham, Alabama, she has recently retired from a twenty-nine-year career in family medicine. She and her husband shared responsibilities at their medical practice, and at their home with two daughters, until Alzheimer’s disease forced his retirement.