05/16/2025
Frontotemporal Dementia - Through the Eyes of a Child
It's hard to pin down exactly when I first noticed something different. My father was such a strong, dependable man, a man of few words, but when he spoke, you listened. He had a rarely seen goofy side and a dry sense of humor that was on point. He was loved and respected by many. I loved him so much. I still do. But our story was not a typical father-daughter story. I learned as much as I could from him at a young age before I couldn't anymore. I've learned a lot about him through others as well. The man I remember so well was not him. Unfortunately, the man I remember most was who he came to be. If I had only known then what I know now.
Early Signs
Just after lunch in sixth grade, walking back to class with another 3.5 hours to go, one of my friends said, "Hey, isn’t that your Dad?" I looked over and was surprised to see him so early to pick me up for his weekend. We still had so many hours left! He was always early, but this was way too early. I was a little embarrassed because my friends were asking, "Why is he so early?" and "Are you in trouble?" I shrugged it off and went about my day.
I got in the car after school, and things were fine. I asked why he arrived so early to wait so long, and he just said he happened to have the time. Little things like this started happening, but being so young, it was hard to string them together to mean something. We would circle the parking lots several times with several empty spaces before he would pick one, but then he would make a joke out of it. In the beginning, it was hard to know if he was joking or if something was seriously off. He seemed compulsive and then completely normal, so I just thought my dad was weird. It's hard to believe he was battling one of the worst diseases anyone could ever imagine—and had been for some time.
As the year went on, he became progressively worse, yet still functional. My family all knew at this point something was wrong, but no one knew what. They took him to doctor after doctor, and they all came up empty-handed: "He's depressed" or "He's fine" was usually the diagnosis. But he became increasingly compulsive and disengaged. They are both such opposite behaviors, yet he mastered them both. He would get on the phone with my friends and me and act so strangely, making noises or being silly—completely engaged and entertaining, yet we couldn't hold a meaningful conversation about most things.
But just as if nothing were wrong, he never forgot a birthday, anniversary, holiday, or anything important. He asked the same questions about school—he had it down like clockwork. He started to drink more to mask this new person he was morphing into, so naturally, I thought the alcohol made him behave so erratically. It made sense when nothing else seemed to.
For a while, we all knew something was wrong with Dad, but we didn't talk directly about it. I would hear my family discuss it, but they didn't want to say too much in front of me at this point; they didn't realize I already knew—and how much I already knew being alone with him so often. I don't think I've ever been so confused as when trying to navigate this father-daughter relationship that had become so different from the one we used to have. I felt crazy at some points: the man got up and went to work every day, he made food, picked me up at the same time, went to the store on the same days. He was still a "functioning" member of society. Yet he behaved in some very bizarre ways that made no sense.
I started to not want to see him as often—which all felt validated at the time. I was 12 going on 20 and didn't want to take time sorting out the weirdness when it was so much easier to avoid it. I didn't love him any less, but I just didn't want to be around him. I also did not want to make excuses for him in front of my friends, which was happening more frequently. As guilty as I feel about it now, I wanted less and less to do with him because I had no idea what was going on, neither did my family... or the doctors.
The Progression
It feels like this was 1,000 years ago, but it was only 24 years ago, and I remember it all like it was yesterday. I don't think you ever forget feeling emotionally abandoned by a parent. Remembering how physically present they were, yet mentally and emotionally absent.
After a few years, it felt like I loved someone who was hollow. His eyes were glazed. The engine was running, but no one was behind the wheel. What a beautiful man to be robbed of such a wonderful spirit and zest for life. But that's what this disease does—it takes away your personality, your individuality, and the unique matter that makes a person special. It steals your identity and completely erases you at some point. It was baffling: he was so young, only 45, but beginning to act like he was 75. He didn't deserve this. We didn't deserve this. No one deserves this.
In the middle of my seventh-grade year, my dad announced he was retiring and moving to our lake house—about 2 hours away from where all his family lived. We were all dumbfounded: retiring early and moving away from everyone he knew? After this, things really started to take a turn for the worse without the mental stimulation and routine of work.
When he moved, I remember being so upset I locked myself in the bathroom and wouldn't come out for several hours (I was also a tad on the dramatic side). I remember being in the bathtub until the water was ice cold, crying into the water, unable to make sense of the tears. If I didn't get out and face the reality, then it wasn't really happening. I was so upset he was leaving, but I think my meltdown had more to do with how I was already feeling about him. This was the beginning of the end.
The Crisis
Spring Break 1999 will always be a terrible memory for me. I know now he was sick, but it took me a long time to forgive him—too long, actually. With this terrible disease, there are several phases of the sickness, and one distinct phase is aggressive behavior. My dad had never been aggressive with me. Outside of the normal spankings or punishment, he never laid a hand on me before Spring Break of my eighth-grade year. He had been living up at the lake now for a few months and seemed to be digressing even more. The compulsive behavior coupled with the disengagement increased at an alarming rate.
I stayed with him for Spring Break. The week started off okay. I talked on the phone with friends, watched movies, and played pool since there were no kids my age nearby. I remember arguing when he wouldn't let me walk twenty steps out the door to check the mail by myself. I was 14—a very independent 14-year-old at that. Being a retired detective, he was overprotective my whole life, but the mailbox was literally right outside.
One day, I decided to cook something on the stove because I was hungry. He told me no because I may burn myself. I started to do it anyway because it was a simple meal, and I was strong-willed and hungry. That's when it happened. He screamed at me and came toward me very aggressively. I moved away from him, jogging. He caught up to me, grabbed me by my throat, and punched me in the stomach. He immediately walked away and sat down. Then he didn't know why I was so upset, almost like he blacked out and didn't remember what just happened.
My mom being in Europe at the time, I called my oldest brother, who came and got me. All these years later, I know he was sick and that wasn’t really him, but at the time, I hated him. I didn't speak to him or answer his calls for almost a year. He sent me flowers, and I threw them away... twice. How could he hurt me like that? I was his baby.
After months of counseling, I finally forgave him, but I was too late. I missed out on almost a year of life I will never get back because no doctor could diagnose him correctly, and we were losing him. I saw him again the fall of my freshman year of high school. He had become so much worse. Still diagnosed as "depressed," but we knew the mark was clearly being missed. Around this time, my aunt Terri and grandma took it into their own hands and started researching. I remember our family's frustration. We seemed to lose our patience. We threw our hands in the air several times, but we never gave up. My family is made up of fighters and lovers—we love hard and fight hard. We were determined to figure something out. We started taking him to more doctors—something had to give.
Destruction
In January of 2001, he was diagnosed with Alzheimer's and given medication. On February 21, 2001, he took his own life. It was my sophomore year in high school. It was a Tuesday. I was told after softball practice by my mother. My world changed. I cry as I write this now. Why didn't I call more? What could I have done differently? I still struggle with this, but nothing like when I was in high school. I was destroyed. He left a note. I thought his act was intentional. I thought he knowingly left us, left me. I was angry. I was more confused than ever before. I wanted to think—no, I thought maybe someone he put in jail came and found him and killed him. I was destroyed.
We soon learned he had Frontotemporal Dementia because one of his sisters was displaying the same signs and behavior as my father. Where I once thought he was weak for taking his life, I came to realize it was his strength that allowed him to end his life. He knew he was sick. He knew something was wrong and couldn't verbalize it. He felt like he burdened us because we were all frustrated with the "new" him, trying to dissect him and figure everything out. I was so focused on how this process made me feel, I didn't even think about how it was impacting his life and psyche. To be aware of losing your memory and motor skills and identity and not be able to control it must have been terrifying.
I now fully believe he did what he did because he was sick. I also believe he did what he did because he did not want to be sick anymore. The man I once knew would have never taken his life, but the man he had become felt like he had no other option. This is one of the main reasons my aunt Terri and our family started an organization to bring awareness to the medical field and the world at large—so no one has to feel su***de is their only option. So no one has to go through what we went through as a family. If I only knew then what I know now.
Written by Casey Bratton about her father.
