Love and Dementia

To Love What Is: The Caregiving Life
Alix Kates Shulman is the author of 12 books including the best-seller Memoirs of an Ex-Prom Queen and a new memoir about life with her brain-injured husband, To Love What Is. See full bio

The Accident

How a shattering accident can help or force you to change.

One day it happens, the dreaded event that will change your life, the more ominous because you don't know what form it will take or when it will occur. To me it happened on July 22, 2004, at two a.m. on a Maine coastal island in a remote seaside cabin, with no electricity, plumbing or road, when my beloved husband fell nine feet from a sleeping loft and injured his brain.


Earlier that evening, he and I, having traveled all day from New York by bus, ferry, and on foot, carrying backpacks of summer supplies across the long beach that separates our house from the nearest road, had climbed up to our sleeping loft exhausted and fallen directly asleep. Suddenly I was jolted awake. Beside me, our bed was empty. "Scott?" No answer. Louder: "Scott?"


I shined my flashlight down to the floor below. There he lay, the man with whom I'd first fallen in love in 1950 and had shared my life for the past twenty years, curled up like a fetus, naked and deathly still. I grabbed my cell phone and called 911.


A great pounding, and the door burst open. From every corner of the island the volunteer fire and rescue team filled the cabin with their bristling energy. As they left moments later carrying Scott's stretcher, I scrambled to put on my sneakers and follow them down the rickety stairs, across the fogbound beach, to the fire truck waiting where the road begins-and off we raced across the island to the dock to meet the fireboat that had been summoned from Portland. As we headed out to sea, I gazed back at that carefree world where life proceeds by days and nights, instead of minute by terrifying minute, knowing we'd left it behind forever.


"It's going to be a very bumpy road before your husband's in the clear," warned Dr. Cushing, head of the hospital trauma unit, after X-rays revealed that Scott had fractured many ribs, punctured both lungs, and sustained multiple blood clots on his brain. "It could be a year or more before we know the extent of the damage."


A year! Somehow, I took this to mean that Scott needed a year to heal. Deaf to the true meaning of the doctor's words-that nothing could be predicted-I embraced Scott's recovery as my purpose, my mission, my calling.


But by the first anniversary of his fall, it was clear that though his bones had healed, his brain had not-and probably never would. His short-term memory and cognitive ability were so damaged, and he was so thoroughly disoriented in space and time, that he could never be left alone. My goal-and our lives-would have to change.

 

 



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