Dad, don’t forget

Watching my father slip into dementia.

Story by LEAH ALLEN | Illustration by LINCOLN HUMPHRY

As a kid, I would search online for the scariest snake images I could find just to see my dad’s reaction. The ones coming toward the screen really freaked him out. It was the way they moved, that “slithering business,” as he would say. I would set these snakes as the wallpaper on our home computer and call him over, then lurk behind a corner with my head poking out, waiting for him to startle.

Two years ago, my dad and I were sitting around talking about a ball python I got to hold during my junior year of college.

“You would have hated that because you’re scared of snakes,” I said.

My dad looked at me in surprise. “How did you know that?” he asked.

I looked at him like he was crazy. “You’re scared of snakes. Everyone knows that.”

“No kidding,” he said.

I pressed him further and asked him what he meant because of course I knew his greatest fear. I looked to my mom for reassurance.

“We know you’re scared of snakes,” she said.

“Huh,” he said.

I let it go after that, but I kept thinking about where his mind had gone and why he couldn’t remember that essential piece of his identity.

This was the first time I realized something was wrong. My dad was 72 years old.

A few months later, my mom told me he was having memory problems. She was monitoring the situation. They had been to the doctor. The doctors ran tests. His short-term memory was the most obvious issue, like remembering what to buy at the grocery store, keeping track of appointments and recalling what happened in all the books he cycled through.

They weren’t calling it dementia yet, but they would a year later after running more tests.

The National Institute of Aging defines dementia as a loss in cognitive and behavioral abilities severe enough to interfere with daily life. In the early stages, symptoms may be overlooked as routine forgetfulness, but eventually, increased difficulty with memory, thinking and reasoning give weight to a larger issue.

When my mom told me about my dad’s memory, I started to notice new additions around the house. A whiteboard was mounted next to the phone for writing notes and reminders. “Tuesday band practice 6 p.m.” A legal pad was stacked on top of my dad’s hardbacks. He had started to jot down notes as he read.

Although things were obviously different, my dad seemed the same to me. He still rose at the crack of dawn to play tennis with the old geezers before my mom and I even woke up. He still came home later in the morning, changed into his work clothes, and puttered around the backyard. He still came inside for lunch to make his peanut butter and pickle sandwich, or maybe it was tuna fish that day. Then back outside ’til dinnertime.

A good sense of direction has never been one of my dad’s shining qualities. He seldom remembers visual landmarks and often blanks on how to get places even if he’s been there many times before.

So, while people in later stages of dementia might get lost more often, my dad was already there. If it weren’t for a bigger sign, I would never have noticed that his sense of direction was also waning, and more than that, his reasoning.

Over the summer, my mom and I were at home when I looked at the clock and noticed it was 9:30 p.m. My dad plays trumpet and had a gig that had been over for an hour. He should have been home by then.

“Should we call him?” I asked.

“He left his phone on the counter,” Mom said.

“We could call one of his band members,” I said.

“Let’s wait,” she said.

An hour went by. I looked at my mom.

“How ‘bout now?”

She pulled out her phone.

The band member didn’t pick up.

My mom peered out our front window into the night. We could hear the rain falling steadily. I listened for the sound of his van pulling into the driveway.

Another hour passed by.

At 11:30 p.m., heavy footsteps made their way to the door. I yanked it open to find my dad standing on the porch in his soaking wet rain jacket, trumpet in his left hand, keys in his right as he fumbled to find the lock. The van was nowhere in sight.

“How did you get here?” I asked.

“I walked from the light rail station,” he said.

“What?! Mom, he walked from the light rail station!”

The station is a mile away.

“Why didn’t you drive home?” Mom asked when we were settled in the kitchen.

“I couldn’t find the van,” Dad said. He wouldn’t look us in the eye.

My dad had parked the van in a garage. After the gig, he couldn’t remember which garage it was. He said all the gates were shut. His parking ticket wouldn’t open any of them, so he walked to the station, took the train and there he was, looking as chagrined as I’d ever seen him.

The next day, she went with him to retrieve the van. They got iPhones shortly after. My mom knew he wouldn’t get much use out of the new phone, but she hoped he would at least carry it around. iPhones have a tracking feature.

On a day-to-day basis, I’m most often confronted with my dad’s dementia in smaller ways. He might repeat stories or questions, or forget that he was the one who bought that lemon bar in the fridge.

Other times, it’s my mom who reminds me.

She goes with him to his gigs now, especially ones in unfamiliar places. At night, she asks him if he’s taken his pills and reminds him of upcoming plans.

These changes are hard, but they’re easier to accept than the changes I see in myself.

The more my mom and I talk about what’s happening, the more I see him as lacking in ability — the more I see him as needing help, needing things softened. I find myself avoiding certain topics and even simplifying the way I speak. Sometimes I feel like the tables have turned, as if I have to protect him, instead of the other way around.

My mom recently joined a support group of caregivers for those with dementia. Some of the caregivers have loved ones in the early stages, like my dad, while others care for people who have progressed further. In the late stages, those with dementia become completely reliant on others. Some may experience delusions and lose their ability to speak.

Thankfully, my dad has a long ways to go.

But even if he doesn’t — even if he loses it all tomorrow, he’ll still be the scholar who got his PhD in economics, and later worked for the City of Seattle for more than 30 years. He’ll still be the fan who attended all of my plays, clapping wildly, beaming proudly as I took my bows. He’ll still be the mastermind who helped me execute my best projects in school. (Our torsion catapult was unbeatable.) And no matter where his mind goes, he’ll always be my dad who I will look up to — brilliant, loving and kind.