Love, Life Stories, Wellness

Am I allowed to grieve my dad while he’s still alive?

Being around him is a painful reminder that things will never be the same.

In my second year of university, I sent my dad a text message.

“I feel like you don’t ever listen to me or care about my life anymore,” I said.

He read the message and didn’t respond. I cried. 

A year later, a brain scan showed a significant loss of tissue in the right temporal lobe of his brain. His neurologist said he had exhibited signs of Chronic Traumatic Encephalopathy, a degenerative brain disease that can only be officially diagnosed posthumously. CTE has been found in many athletes. My dad isn’t an athlete but a few years before his diagnosis, he had a major concussion from falling off a horse. 

Some symptoms of CTE include dementia, problems with thinking and memory, personality changes, and significant behavioral changes. Mike Webster, a former NFL player, was diagnosed with CTE after his death in 2002. His son described him as a smart, caring and loving man. However, in the last 10 years of his life, he became violent and angry. He died with no money and only a handful of friends who still cared about him.

In the years following my dad’s traumatic brain injury, my stepmom told me something wasn’t right. My dad couldn’t hold a conversation, he was rude and was insulting to acquaintances, friends, and family. He started getting angry over trivial things.

I sympathized with my stepmom and worked on getting him help. Despite his resistance, we believed that getting him to the hospital and a diagnosis would help. 

But the diagnosis didn’t offer a way forward. In fact, the neurologist told us things would continue regressing in the years to come. In the meantime, my dad drank uncontrollably and would often fight with my stepmom.

Eventually, she decided to leave.  

As heartbreaking as this was, I understand why she left. Trying to control his outbursts and impulsive behavior was taxing on her.  Staying with my dad meant sacrificing her own happiness.

Since then, I’ve been trying to come to terms with his injury and support him. Because my university is a 12-hour drive away from home, this isn’t easy. When I went home for a three-month summer holiday, I decided to spend a lot of time with him.

I soon realized that I didn’t enjoy being around my dad. 

When I’m away from him, I often forget things aren’t the way they used to be. But when I’m with him, I am reminded how the man who raised me is disappearing. 

My dad and I used to have a lot in common. I would talk to him about history, politics and current affairs. He would listen, comment and engage with me. He told me about the research he was doing. My dad lectured sociology and was interested in the social sciences. I say ‘was’ because he doesn’t have this interest anymore.

Instead, my dad talks at you about horse-racing. He doesn’t engage in conversation. If I or anyone else talks, he walks away or shouts over you. Being around him is a painful reminder that things will never be the same.

Spending time with my dad this past holiday, I found myself detaching and ignoring him. I’d go on my phone, or spend my time reading. This made me feel overwhelmed with guilt. This is the quality time I set aside to spend with my dad. Because I don’t know how much worse things will get I need to take advantage of the time I have.

The hard thing about my dad’s brain injury is that it’s hard to draw a line between the person my dad was and what changes in personality are because of his brain damage. 

The changes didn’t appear overnight. They manifested over the years. This is why it took so long for my family to convince my dad to get a diagnosis. In the beginning, it was easy to ignore the changes.

Eventually, it became impossible to ignore.

What scares me is how easily his current personality can mask my memories of him. I constantly have to remind myself who my dad was before the injury. 

What scares me, even more, is that I don’t think I know how to love the person he has become.

I’m grieving the man my dad was. I’m mourning the loss of his sense of humor, his enthusiasm, his willingness to engage in new activities, his intellect, and his wit. Most of all, I’m grieving his ability to show love.

At the same time, I’m trying to learn how to love the person he has become.

Of course, I will always love my dad. But I want to learn how to love him for everything he was and everything he has become.  I’ll be learning how for the rest of my life.