standing with hope

by rebecca smith

Recently, Bruce Willis was diagnosed with Frontotemporal Lobar Dementia (FTD). Seeing this, my heart sank and a never healed wound broke open again. FTD is real dementia, but it is an animal in its own classification. This disease causes atrophying of the frontal lobes of the brain – the areas controlling thinking, emotions, personality, judgment, self-control, muscle control and movement, memory. In reality, it affects areas for being rational, how to act and control yourself in public, how to take care of yourself and mostly, it affects behavior control in dynamic ways.

My siblings and I were young when this happened. Most of our formative years were shadowed by this unknown sickness taking control of our dad. This became our norm until it became obvious this was not supposed to be a norm. I feel it is time to lay out the real effect of this disease on an individual and those around them, and to shed a little light on untreated mental illness and dementia – how difficult it is to get treatment for someone when they will not accept it, and when they do not have access to resources. It mostly opens a window of the effect on those those around the illness. It definitely gave me a perspective on things, and created a side of me that grew tough skin.

the fun dad

We had such a fun Dad. Always resourceful, smart. Creative. Mechanical, Childlike. He could fix anything and everything. My brother’s and my younger years were filled with adventures; we always had some type of gadgets or random vehicles to play around in. Dad was always busy doing some project. I could go on about our adventures and his childlike sense of wonder. He taught us the outdoors, taught us how to build, fix things. To be imaginative. To always be a kid. Taught us not to be afraid to get dirty. He made sure I knew how to take care of myself and never a damsel in distress.

Dad was kind, caring and gentle- would give you the shirt off his back if you needed one. He was well known around town and liked by everyone who knew him… even though he could talk the ear off a statue.

Dad and I were two peas in a pod. I am the female clone version of my dad. I look nothing like my mom or siblings. I inherited every single trait from my dad – from the same crease in my forehead to the curls in my hair. The same maneuvers and personality.

He was a lifelong, obsessed lover of the Dallas Cowboys and anything football. When the Cowboys were on, you did NOT disturb him, in fact you probably should not even breathe near the room where he was watching the game. He loved his semi like his other child, and drove it all around the country – always taking the scenic route. My brother and I would often tag along on trips. He taught us CB lingo.  Most trips included the phrase, “Don’t tell your Mom”.

My sister came along when my brother and I were heading out of these young years. I will never forget the look of excitement when he announced Mom was pregnant, the excitement when he told us he was taking mom to the hospital. I think he was excited he was able to do the kid thing all over again. The excited call the next morning to tell us she was born. He was ecstatic when she turned out to be a lefty just like him. I’m not sure how much she remembers, but I can remember him out in the yard working with her on softball, repeatedly resetting the tee – and he was trying SO hard to get her to bat as a lefty.

I remember him writing her name all the time, with a circle dotting the ‘i’. He would label everything with her name. Sitting at the kitchen table playing hours of paper football with her. I can remember him playing with her and flying her around the house when she was very small. He built a two-story playhouse just for her in the backyard, building over the fort he built my brother and me years before. I have always felt a little sad for my sister. His disease had already taken hold by the time she would be old enough to hold onto many good memories. She was very young when everything started to change. She never got to know the dad my brother and I knew. All she ever got to know was the version of Dad described below.

changes

All my life and still to this day, I hear I am so much like my Dad. Since my Dad and I were essentially the same person, when I got to my teenage years we fought over everything. We would fight about what color the sky was. My Grandma told me he would go over to her house and ask her advice on how he could get along with me better, because he just didn’t understand how to relate to a teenage girl. And I know he really tried, and sometimes we were cool, but I was a stubborn teenager – most of the time just as unpredictable as a cat being baptized.

In the years I was in HS, I noticed things started to change. Dad became awkward and strange; he did and talked about strange things. He became the one we were embarrassed to be around. We never brought friends over. When he’d pull in the driveway after a long haul, we’d scatter to our rooms to avoid listening to any crazy stuff he had to stay. People around town started to notice too and would talk about or avoid him.

As the oldest child, I feel I saw and experienced more than my siblings. I was told more because I was “mature”. I had different responsibilities. I know not all this may be entirely true – I know my siblings experienced things as well. I just seemed to be the one old enough to hear more or notice more. People would share comments about him with me, tell me things he did or said, ask me many questions. Share how they felt about him. I do not feel I was as “protected” from everything happening around me. I absorbed and withheld, held a lot on my shoulders.

Around the time I graduated High School, Dad started to withdraw. He was always in his garage. He would stay in the garage for hours. Sometimes mixing a car polish concoction he created, or cutting out mass quantities of wooden apples. He would be OCD or hyper focused on things, repetitive. His conversations did not seem to make sense all the time and he would ask me strange questions. Things at home became uncomfortable. I realize now I kept myself as active in school activities as possible just to be away from home as an avoidance mechanism.

We rarely had visitors. Most would only come over when Dad wasn’t home. Our family as a whole became pretty isolated; we did not have a true social circle.

Dad’s appearance and grooming habits changed. His hygiene standards dropped. My dad smelled like sweat, coffee and three stale packs of Marlboro Reds most of the time. He smoked like a chimney. He never changed his clothes. He rarely ate. He became obsessed with odd random things – he always liked to work out, but became over obsessed with things like exercise weights, pull-ups, jump roping. He would wear ankle weights and wrist weights all day long.

His sleep habits became erratic, eventually turning into never sleeping. When he did sleep, it would be in bursts of 2-4 hours, maybe every 24-48 hours sometimes for days.

He became gullible and naive. Then the paranoia crept in. He’d say things here and there about the government watching and controlling through the TV or Radio. We laughed along at first, but then realized he was serious. When we got new windows he was ADAMANT he wanted mirrored windows so the government could not send anyone to look in the windows. He bought into various conspiracy theories. I remember a few times he would talk to me about “visions” or things he encountered… I thought he went crazy, but we now know his disease was taking hold of his mind.

During this, we tried many times to get him to a doctor. We tried to convince him to seek help. To no avail.

Then the behavioral changes came. They started with irrational decisions and eventually migrated to erratic, concerning thoughts and visions. He had no regulation of his emotions. He would quickly turn into a rage. My Dad was never known as an angry man. He would start crying easily while in conversation. All of these changes began to mix with his irrational thoughts and judgment, which made for some unstable times. He had started to act out impulsively.

My Dad was fired and removed by his longtime employer due to a behavioral incident. This was incomprehensible at the time because he lived and breathed this job. He had been a dedicated, faithful employee for a long number of years with a great reputation and a strong pride of being part of the organization. Mom and I learned what had actually happened in the incident and we were dumbfounded.

I lived at home until I was 20 with little motivation to leave, until a scary encounter with my dad. A heated argument, some horrible things said by both of us. The reaction of my dad and the look of his face and eyes will never leave me – he was NOT my dad at that moment. After it was over, he snapped right back to normal and walked to the garage like nothing had just happened. This incident was one of the big turning points in our family experience. I left home (escaped I felt back then) within 2 days. Within a few days of my leaving, my mom put padlocks on my bedroom door and moved herself and my sister up there, and they slept with the door locked whenever my Dad was home. 

Not long after, Mom called me and said she left my dad. She couldn’t do it anymore. She moved everyone – and everything – to my Grandma L’s house. Grandma L told me many times she LOVED my Dad and how great of a person my dad was, but she had grown scared of him and she was so sad to see him like this. Grandma even had an alarm installed on her back door so she could be prepared when my Dad would find a way to barge into her house – because he would show up and sit in the driveway frequently. 

Changes in how he interacted and reacted with his brothers, his parents, us. How he acted, reacted. Mom and I wondered if he was using drugs, but knowing his stance, we knew this was unlikely. We believed he was schizophrenic. Or severely mentally ill. We just knew he needed help. We still could not convince him to get help – because “There was nothing wrong” with him. We consulted lawyers and were told we had very, very few options because in the eyes of the law, he was a competent adult and could not make him do anything without his consent or voluntary agreement. We could not force him to receive treatment. 

My Dad financed a new pickup truck. A new phone. Started sending all his money to Presidential campaign fundraisers. He eventually decided he had been tricked into making payments for the truck so just dropped it off with the keys in front of the dealership door and walked away. Mom was awarded the house but he wouldn’t leave, so the court said she’d have to evict him. Knowing he’d have nowhere to go, and knowing forcibly removing him was not going to go well, she let him stay.

So, How did I cope? I coped horribly. I coped by making many bad decisions, spending too many nights to count in the bars. Ignoring the obvious. While my brother and sister experienced many of the changes, I ignored them. I was mean to my Dad – I pushed him away, out of my life. I felt as though he was a burden. An embarrassment. I never ever fully comprehended back then what really was happening and where it was all leading.

I’d see my Dad sporadically, usually when he stopped by my apartment and asked me for $20. Or when he’d pull in my driveway and sit there with the dome light on. I’d ignore his calls. I started getting collection calls for accounts he listed me on as a contact person or authorized user. 

I got married in spring 2003. By now, he had become overly erratic and irrational. He would wander off. He rambled. He smiled a lot. He’d tear up a lot. He’d just stare off with a smile. I chose to not have my Dad walk me down the aisle, which will always be one of my biggest regrets of my life knowing what I know now. We rented him a tux. He wore it for the entire day of the rehearsal dinner, where he just stood with a vacant stare and smile. He walked around and shook everyone’s hand, including as he walked up the aisle during the ceremony. He wore the tux again the entire day of the wedding.

I danced the father/daughter dance with him. When he was struggling to coordinate and tripping over my feet and his own. He stopped mid song and just sighed and looked at me (and he was really my dad at this moment) and said, “I’m sorry, I’m not a very good dancer, but I’m trying really hard. I went to Grandma and she tried to teach me, but I’m just not very good” and smiled his genuine smile. He left the reception shortly after the dance because he decided he had to get gas in his truck – which now was a 1978-ish white one-ton Dodge Ram with a customized blue stripe down the center he added to make it look like a Dallas Cowboys football helmet. When I look back at those pictures, I notice how unwell he actually looked.

To be continued…June 15th…