standing with hope

by Aaron smith

Fun, athletic, devoted and outgoing are words often used to describe my dad. He was all of these and more, but unfortunately, these words are now used just to describe the memory of him. My dad loved three things in his life: his family, the Dallas Cowboys, and trucking. And it wasn’t always in that specific order. He could tell you every single tidbit and fact about the Dallas Cowboys from any year or without looking at a map, tell you every single road and turn on how to get to a certain location. He was always active in our childhood, especially anything sports related. He would push us to practice and get better in the sports we were involved in. He also coached and oversaw the whole flag football league even when I was past the age to play in it.

During my later years of high school my dad’s behavior changed. He was still the same dad, but his quirkiness rose to levels of just being odd. He became paranoid, often explaining that the government had cameras in our tv’s to watch us or telling us how so and so was out to get him. During this change his anger would sometimes slip out, too. I saw times where he would get in arguments with my Grandpa, who was one of the nicest people in the world, over the smallest things. The largest argument I had witnessed was during setting up for my graduation party. He exploded on my uncle, his own brother, for something so insignificant that people were taken aback and people had to calm him down. My uncle didn’t bat an eye, and just figured it was “Mike being Mike.” There was obviously something wrong with him, but no one could convince him otherwise.

His attitude was getting worse by the day, so a while after my graduation my mom ended up divorcing my dad. Due to his unpredictable actions my mom, my younger sister, and I ended up moving into my grandma’s on my mom’s side’s house. We were all in shock, but we knew my mom had to do what was best for us. My grandma, his mother, agreed.

I didn’t think this affected my dad at first. He was still driving his semi all over the country and would often call late at night to have us listen to songs on the radio that he would dub “our songs”. “I’m Your Captain” by Grand Funk Railroad was “my song”. When he wasn’t out driving he would stop over to my grandma’s with tears in his eyes and smile. He would often bring a bag of change for my younger sister.

The tears were noteworthy. I had never seen my dad cry. In my family we didn’t really show emotion or express our feelings and emotions. We never said we loved each other or hugged each other. We just knew and felt the love was there. Even when we would get hurt, our parents never babied us, it was just more of a “don’t do it again” and slap a band-aid on it type attitude. Then they would push us back outside to play.

Although the tears were there, his eyes seemed hollow like the dad I knew wasn’t there.

Things truly kicked into overdrive when we had received a call from my grandma, my dad’s mom. He was pulled over in Tennessee for having expired tags on his semi truck and when the officer stepped up to the window my dad punched the police officer. This was completely out of character for him. He was arrested immediately and put into detox for several days. During the majority of my dad’s adult life, he was strongly against alcohol and drugs of any kind, so hearing he was in detox threw us for a loop.

My grandma, older sister, myself, and brother in law at the time took the trip to Tennessee to get him out. Good news was he wasn’t intoxicated or under the suspicion of drugs. The police had put him through detox because his behavior was so erratic. We successfully bailed him out and got his truck out of the impound lot. No one wanted to tell him to go to the doctor’s because we didn’t know how he would react towards us.

A short time went by and there was another incident. This time he was pulled over at around 3 in the morning. We were told he was driving 35 mph on the highway and was heading to Lansing to get a document certified. He also had his handgun on the dash of his pickup truck for no apparent reason. When he was finally stopped he did not comply with the officers so they had no choice but to tase him 4 times to comprehend him. Fortunately they could tell something wasn’t right with him and took him to the University of Michigan Hospital.

After running tests and scans, they were able to diagnose him. He had Frontotemporal Dementia (FTD). We were in disbelief to say the least. We always thought dementia was associated with old age. How could my dad, who’s 48, have dementia? We had so many questions running through our heads. At the time the doctor’s couldn’t tell us much about FTD, so our questions if it was hereditary or what caused it could not be answered.

We had no choice, but to place my dad in a nursing home. We did our best to make it like home for him. He had his chair from home, some pictures of family, and a TV so he could watch all of his sports. I would visit him as often as I could. Most times I would be greeted by him at the main doors with everything packed up so I could take him home. It was heartbreaking telling him I couldn’t. Sometimes he would get frustrated and not say a word.

Sometimes he would ask why and I couldn’t give him the truth, so I had to make up a story that my car was too full to have a passenger or something along those lines. We would then gather his things and head back to his room. At least he looked happy whenever I brought him a Frosty from Wendy’s. He would often get other visitors who were patients staying at the nursing home with him. I would consider them friends of his since he would tell me about them.

As months passed, his speech became less recognizable and his muscular frame turned thin. He always had long curly hair, so to my surprise when I came to visit him he had a shaved head.

I was told it was because he wanted his hair like mine. One of the people I looked up to when I was younger wanted to be like me. Still makes me tearfully smile to this day.

Then one day while I was with some friends visiting another friend at college, I had gotten a call from my older sister, Rebecca. Our dad had fallen and it wasn’t looking good. I had to scramble and figure out how my girlfriend, now wife, and I were going to get home since we rode with our other friends. Luckily my cousin, Molly, was in the area and we met up with her to travel home.

We finally arrived at the nursing home and it wasn’t promising. He laid there in his bed, almost motionless. When he did speak no one could tell what he was saying. Over time his ability to speak completely vanished, he couldn’t eat so he had a feeding tube, and Hospice nurses had to routinely turn him to prevent bed sores. We didn’t want to believe it, but his time was coming to an end. The family gathered by his bedside to say their goodbyes and then he was gone. He had just turned 49 a couple of weeks before.

I’ve never really talked about the subject of my dad’s situation, but I look back during this whole period with a lot of regret and some anger. During what I guess would be the early stages of his FTD I was a late teenager and I always viewed my dad’s behavior as embarrassing. I wouldn’t bring friends over to the house because of that. Of course I wish I would’ve known then what I know now, especially going into my early twenties. I thought I knew everything and didn’t think my dad’s situation was that dire. I was wrong and now I regret that. The little anger that resides with me is not directed at anyone or anything, just at the fact that I will never be able to have an adult or dad to dad talk with him. Especially at times when I’ve needed it. It’s extremely tough to see someone that you idolize growing up to slip away and not be able to do anything to help.

Because the cause of FTD is still unknown I’m slightly scared that either myself or one of my sons will inherit the possible gene of it. Not only because I know what myself and my sisters went through with my dad, but also because of the pain it caused my grandparents to see their son deteriorate before their eyes. My mind constantly ticks knowing that 49 years old is coming fast for me and I don’t know what it will bring.

I do have to say through this devastating experience, I definitely have a different outlook on life.

Be nice to everyone no matter who they are because you never know what they are going through and try to make as many pleasant memories for others as you can.

-Aaron smith