Caregiving: A Burden of Love

Recalling a mother’s devotion for her son, while exploring the connection between Alzheimer’s and Down syndrome.

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Posted in , Jun 2, 2021

Walking in the woods with Gracie

I first saw them at a little dirt parking area for the Appalachian Trail while Gracie and I were getting ready for a hike up to The Ledges—a mother and her son. He was a lanky teen close to a foot taller than his mom. She was trying to keep him from forging ahead and crossing the road to the trailhead. “Just wait for me, hon,” she implored while he hopped around impatiently. 

It was pretty clear that her son was on the spectrum, in today’s parlance for degrees of autism. He kept promising not to cross the road. Meanwhile she was loading water and snacks into a bag and trying to keep him close. I felt for her. She was very thin, the kind of thin you get from worry, but her attitude was so patient and upbeat. She gave me a glance and a smile, but her focus was on her agitated son. 

I decided Gracie and I should get ahead of them, so we started off. Soon enough, though, they came up from behind, the boy taking long purposeful strides and Mom trying to keep up. I gestured for them to pass but they stopped short. 

“I don’t like that dog!” he shouted. 

“She’s cool,” I said, stepping off the trail so they could get by. 

“The man has her on a leash, Todd,” his mom said.

“I don’t like that kind of leash.” 

I was walking Gracie on a 15-foot “flexi,” but I’d reeled her in and locked the mechanism. 

“Look, he’s holding her. It’s okay, Todd.”

“I don’t trust those kinds of leashes!”

“How ‘bout I use a short one,” I said, pulling Gracie’s regular leash from her trail bag and hooking it to her harness. “See?” 

“Those dogs are too big!” Todd said, moving cautiously. “I like them when they’re littler.” 

“She’s a very nice dog,” said Mom, gently moving her son along while Gracie sat demurely and wagged her tail at the compliment, the perfect little soldier. Again, I was touched by the good-natured patience and quiet control the mother possessed, especially when she looked back and waved. 

I let them get a good distance ahead as I thought of my own mom and the challenges of caring for a child with a disability. My brother Bobby, who loved animals and was four years my elder, had Down syndrome, which I’m quite aware is different than autism. Still the pressures that a family experiences are similar. 

Like Todd’s mom, my mother had a bottomless well of patience and devotion to her son. The only time I ever saw my mom defy a priest was when our pastor suggested Bobby might be better cared for in an institution. She practically threw him out of the house. I’d never seen her so mad except one other time, a time I’ll never forget. 

I’d come home from third grade that day and went directly to my room to feed my pet green turtles, Sarge and George, who’d come from our five-and-dime, and to change their water. But Sarge and George weren’t hungry. They’d never be hungry again. Bobby had taken it upon himself to change the water in their aquarium and unknowingly used scalding hot water from the tap. My turtles could not even find refuge on their little plastic island with the little plastic palm tree. Bobby had submerged it.

I was angry, as angry as I’d ever been, that he could make such a dreadful mistake. A dumb mistake. He’d boiled Sarge and George alive. Just then Bobby and Mom walked into the room.

“You stupid…” I started to scream and caught myself. Too late. There was a bloom of pain in my brother’s pale blue eyes. Mom sent him out back to play. I felt horrible. At that moment I couldn’t have hated anyone more than I hated myself. I think Mom was as close to striking me as she would ever come. Instead, she shook me by the shoulders and said, “Don’t you know God gave Bobby to us so we could help him? Don’t you?”

Watching Todd and his mother disappear down the trail I said a prayer for them and thought of Mom and her devotion to Bobby. Caregiving is a burden of love. Bobby died when he was 12 but had he lived he would have been highly susceptible to early-onset Alzheimer’s. Alzheimer’s eventually took my mother, and researchers are trying to understand if there is some underlying genetic affinity between Alzheimer’s and Down syndrome. 

A couple of weeks ago I told you I was going forward with an MRI of my brain in my quest to understand my own susceptibility to dementia. The results are in, but I have yet to discuss with my neurologist, and I can’t make heads nor tails of the radiology notes in my digital health file. Meanwhile I made before and after videos that you can watch here. 

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