Memories of Daddy, pt. 1 & 2

Trigger warning - This piece discusses complications and behaviors associated with dementia, mental health, domestic issues, and abuse. 

I - Unfortunate Truth

His brain is sick.

That’s what I told my son the day after his grandfather did the thing I was the most worried about. His Papa, my Dad, in one of his dementia episodes, lashed out at my oldest son. It terrified him. It infuriated me. It justified my mom. It embarrassed my dad. But that wasn’t the worst part of it. My son was fine. But when my son asked me the next day, before getting ready for bed, why, I didn’t know how to answer him. I didn’t know if I could.

So I kept it as simple as I could in the moment, hoping my son would understand. “His brain is sick, so sometimes Papa does things that he doesn’t know he’s doing, and he doesn’t mean to do them.”

Of course, he tried to rationalize it and come back with the typical child’s response. "If he’s sick, we should take him to the doctor so he can get medicine to make him better."

“Baby, that’s just it. If someone’s brain is sick, there’s no medicine in the world that can make them better.”

"So… Papa will never get better? Ever?"

“No. Papa won’t. But Papa will have good days, and he’ll have bad days. When Papa has a good day, his brain isn’t so sick and he does things that make us laugh and be happy. Like when we go fishing or when we play tickle monster and roast marshmallows. But when Papa has a bad day, his brain is more sick and that’s when he does things that he wouldn’t normally do. And he doesn’t know that he’s sick or that he’s doing these mean things.”

"It scared me. I need to stay away from Papa."

“No, don’t do that. I know it scared you, and Papa said he was sorry. Here’s what I want you to do instead, okay? If Papa is having a good day, you can still play with him and give him hugs. He needs to know we still love him and that we want to have him around. If Papa is having a bad day, then you just stay close to me and I will take care of Papa. Papa won’t hurt you again. Mommy won’t let him.”

That night, my son dreamed. I heard him cry in his sleep. He ended up climbing in bed with me and my husband at about two in the morning. I cried too. I don’t think I slept. It had been four years since he was formally diagnosed with dementia, and it had been one year since the accident that made it all exponentially worse. I had always heard stories of people with dementia, their families coping with the forgetfulness, childlike fretting, and aggression. I never thought I would have to cope with it too at thirty years old.

"I miss when Papa played with me. I don’t like it when Papa is mean to me. I see him be mean to you, too, Mommy."

“I know. And Papa doesn’t know he’s being mean. Here’s what I want you to do instead. Let’s think about the happy things we have done with Papa, like going fishing and watching football. Can you think of your happy memories, and hold them close? Maybe then we can be happy and remind Papa to be happy, too.”

And so the memories begin.

II - The Onset of Parkinson’s and Dementia

I can’t remember a time when my dad wasn’t sick. He was diagnosed with Parkinson’s at a rare age, only thirty four. I was about two. Even then, I didn’t understand that my dad was any different from other dads in the world. I didn’t hear the now infamous phrase he’s sick until I started grade school.

My first memories of him are practically normal. He was a working man. I remember spending a lot of time at the Hunter’s Hideout, where he sold hunting and fishing supplies and repaired rifles. I would wander the aisles and look at all of the decoys, calls, and fishing lures, and sometimes I would take my stuffed animals up into the model tree stand that was anchored up next to the door. I would wave down at anyone who came in, kind of the unofficial greeter. By the time I started kindergarten, though, that job no longer suited him. The tremors began, and as long as he had tremors, he couldn’t repair the guns. I was disappointed that we wouldn’t be back to the shop as workers again. I understand now that he was devastated.

After the tremors started and he couldn’t work, the depression came. According to some family members, he was insulted by some who were close to him.

How dare you let a woman take care of you.

You’re a man, you’re supposed to provide for the household.

What kind of example are you giving that baby of yours?

So-and-so’s got problems and they still work! You’re just making up excuses.

It destroyed him. He became angry. He started drinking. He started smoking. During the day, he still took me to school, went fishing, and designed and built houses and barns with my uncle. At night, he and Mom fought. Yelling, screaming, begging, cussing, throwing things. A door got ripped off the hinges. A hole got punched in the wall. A window got shattered. At first, I would hide in my bed in my room, holding a teddy bear to my chest and a pillow over my head. Then I started trying to get between them, crying for them to stop. Then Nanny and my Papa took me to their house. I started spending several days a week either with them, with a cousin, or my aunt just down the road. It lasted for several months, until my dad could get the help he needed and get himself back under control. And that was the first time I ever heard it:

Your Daddy is sick, and he won’t get better. He’ll only get worse, and we’re going to have to take care of him.

And we did. Mom was studying to get her Master’s degree so she could enter a new pay scale to help pay for all the medical bills Dad started to accumulate, and Papa volunteered as treasurer for the fire department. So when I would get home from school, Nanny and I took care of the house. We cooked, we cleaned, we made sure Dad was okay, and we tried to make it easier on all of us. I learned. I worked. I served. It became normal for me to wake up early, do chores, help Mom get the house ready for Dad, and go to school. After school, I would come home, do more chores, help Nanny cook, load the washing machine for Mom, and then keep Dad company by watching TV. He didn’t always watch things that were appropriate for a child, so I usually ended up running off to my room to play instead. As Dad’s symptoms progressed, steadily getting worse over the course of four to five years at a time, my responsibilities to help care for him increased.

My middle school years and the beginnings of high school were the beginning of what I call the second stage of his Parkinson’s. He lost more mobility, becoming more reliant on a wheelchair and cane. He was stubborn about it and tried to go without, and that resulted in a lot more injuries from falling. He was soon on a first-name basis with everyone at the local ER, which Mom was embarrassed about while Dad was amused. He often bragged about it to me and his friends. Hey, who else can say that they know their doctor so well that they call them by their first name?

By the time I went off to college, Dad was practically bound to his wheelchair. I don’t know exactly how we did it, but we somehow got him to start using his motorized wheelchair around the house every day. He would drive it into the kitchen, which we kept the floor wide open to give him room to turn and move around from the fridge to the sink to the microwave and back again. He would drive it to the door of the bathroom, or park it outside of his bedroom. He usually kept it parked next to his recliner, with the remote and a fresh Barq’s on the table right beside it. I worried about him every time I left, and I started to worry about my Mom. They were getting into their fifties, and I knew in the back of my head that I had been a major contributor in keeping Dad safe and healthy. I was their only child, and I was the only one physically big and strong enough to get him off the floor when he fell.

We suspected that Dad was developing dementia around the time my first son was born, seven years later. He started forgetting simple things more often, like who my friends were, where my husband was working, how to put a phone number in so he could call or text, what day of the week it was. Trivial things. But it scared him.

I still came up every weekend to spend time with them, and so they could spend time with their grandsons, and I saw a change in Dad. He started staying up late. I would hear him huff, sigh, sniffle. I would go into the little office, which used to be my bedroom, and sit with him.

I’m going crazy. I’m losing my mind. I know it.

I’m making it harder for you. I ruined your mom’s life. I ruined your childhood.

I should just disappear, then you and your mom can be happy and live.

Why don’t they want me? They never call me anymore.

And every time, I would tell Dad that it would be okay, that Mom and I still loved him, no matter what, and that he did not ruin our lives. It pains me to see that his friends and his side of the family stopped reaching out to him, but at the same time, it was becoming more difficult to understand him. He rambled. He stammered. He mumbled. He couldn’t write. We developed our own form of sign language, and it worked for a while. But as the years moved forward, he lost more and more. He forgot more. His sadness turned into desperation. He started trying to steal Papa’s truck or my car and drive around, looking for anyone to give him company that wasn’t family. Then it turned into anger.

But I meant every word. He is my Dad. He always will be. I will always love him. I will always have that sadness for him, having spent my entire young life watching him slowly change from a tall, strong, happy, loving, working man, into what my son experienced first hand that dreadful night. But even in that sadness, love remains.

My dad was a good man in his prime, and that’s the part that I will cherish the most.