standing with hope

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by rebecca smith

Part II: Help

November 2003, Dad was arrested in Tennessee. We were hopeful this was a blessing in disguise. We were wrong. TN authorities would not do much because he was an out of state inmate. We spent the weekend visiting him in jail, getting his semi out of impound and bailing him out of jail, just to release him back into the world. We had no choice.

I didn’t see him much after this, but when I did his conversations were always very dark and disturbing, off the wall. I became more concerned I was going to get a call he did something awful. Thankfully, this type of call never came, but another did.

I remember stopping to the house one day to check on him. He met us at the front door as soon as we pulled in and wouldn’t let us in the house. After we left, he immediately called my brother and asked who the lady in the back seat was and said how he didn’t appreciate my brother bringing strangers over. That lady was me.

This story was shared, but was a turning point. March 2004, he was pulled over after a low speed police chase.  This was the long overdue, sad blessing in disguise we had prayed for. Awareness by all personnel involved resulted in an ER admittance. I remember the call from Grandma very early in the morning, and my grandparents following me to the ER, and walking into the area where he was restrained and sedated off in a corner curtained off area. I remember conversing with the doctors, signing consent for testing, scans and an eventual spinal tap.

I was next of kin. A lot to process for a 22 year old. I was concerned and scared – he is my Dad and I do love him, but deep inside I was annoyed. I had learned over the previous few years to be hardened and strong, sometimes to a fault. Grandma, Grandpa, me and my brother (my sister was in school) spent most of the following week at the hospital, and on March 31, we were told his diagnosis was early onset Frontotemporal Lobar Dementia (FTD). In 2004, this was a rarer form of dementia. He was also a rarer case due to his age – 48. There was no way to treat it. Only manage – if we were lucky. Scans of his brain proved his case was already far too advanced. The result is always fatal. Our Dad was dying. 

In the following week, we had to work with the sheriff to get multiple charges taken care of. We had to get his pickup truck out of city impound. I never imagined I would have to go to a police evidence room with my Grandma and Grandpa Smith of all people to claim/sign for a 45 Magnum Long Barrel revolver in a paper bag. During this trip was the first time I had ever heard my Grandpa swear. I sat in the backseat of their Suburban in shocked silence because I never knew my grandpa knew those dirty words.  

Dad was placed on an involuntary psych hold for the next month and moved to the taboo psych ward. My Grandma, brother and myself had to go through a trying court process to have my Dad declared legally incompetent. I cannot explain how taxing and mentally defeating this was to know we stripped my dad of his identity. We were named legal co-guardians and co-conservators. This was the only way to ensure he would receive treatment. After long, heart-wrenching discussions, we all knew we would not be able to care for him and we struggled to find a care facility to accept him. His age, condition and violent tendencies caused most places to deny placement. Also, his status as a Medicaid patient, which is another story.

The only place willing to accept him was the type of place I never would have imagined I would send my Dad to live the rest of his days. It was a place families send their “burdens” to forget them. Horrible reputation, Prior lawsuits and complaints. He was sedated and delivered to the nursing home by ambulance. My brother and I arrived early and met him there. It was so much to process. We all visited Dad as much as possible. Over those months, I only saw ONE person come to visit their son. We grew to know all the residents on this secured, locked down unit by name, and they all grew excited when we came to visit, as if we were their family now.  

After all this happened, Mom moved back into the house. When we first entered after such a long time we were shocked. Complete disorder and disarray. Nothing but a plastic folding table littered with mounds of Dinty Moore Beef Stew packages in the middle of the kitchen and corners, a couple folding chairs in the living room and an old bed in the bedroom. Garbage everywhere. Bugs. Dirt. Grime. Pictures of George and Laura Bush in every room and facing the outside in almost every window. 

Dad continued a steady decline, and would soon begin to tell me he saw his Grandpa Smith out in the vacant overgrown lot across the road. The house had not been lived in for years and was falling down. Nevertheless, when I was there, he would stand by the window and wave to Grandpa. 

June 2004, I had the opportunity to move to Texas to live 5 minutes away from Texas Stadium, which he raised us to believe was the “greatest stadium on Earth” and built so “God could watch his favorite team” (side note – I discovered it was far from the greatest stadium on Earth, but I’ll let him continue to believe). I was encouraged by many to go build my life – escape. It had availability of free flying whenever I wanted (airline benefits). I made sure to come up at least once a month. I wrote many letters and sent many pictures.

He would write back, but each letter or card became more obvious to me he was not able to put thoughts together, and eventually he could not write his name.

December 2004, I came up a week before Christmas to celebrate. Grandma made a beef roast, and she, Grandpa, my brother, sister and I had a small celebration in the “ballroom” of the facility. Grandma and Grandpa made sure Dad had a gift for each of us kids. I bought him some official Dallas Cowboy wear from the Cowboy Fan shop outside the stadium. Little did I know we would be burying him in these same clothes less than 2 months later.

Dad was very docile by this point. He smiled a lot. Didn’t get out of the chair we had to help him sit in. Was like a child. He didn’t speak much, more of a bunch of slurring and grunts. He didn’t move much. He had begun to limp and drag his foot when he walked. I realized Dad was ‘gone’. I held his hand and talked to him as if I was a little girl again. I didn’t know what else to do. 

At this same time, I was planning another move to Utah. To the Rocky Mountains, to again live another dream of his by living in the mountains. I wasn’t able to come visit the month of January due to my move. The first weekend of February 2005, I came home with a plan to go to my junior high/high school bff’s wedding Saturday and visit Dad on Sunday. I went to the wedding – had a great time – and was woken up at 5 am Sunday by a phone call from Grandma. My Dad had fallen and it didn’t look good.

I could write a novel about the next few days. Many memories, good and bad. I didn’t sleep for 4 days. An ice storm hit. Hospice came. A feeding tube, morphine. Family called in. He kept holding on. On Wednesday, Grandma suggested my sister, brother and I take a break and go play Atari in the game room with the other residents. We left and within 5 minutes, Grandma came to find us, only saying in her gentle, calming way, “He’s gone”. I really believe he was waiting for us to leave the room, and this is why Grandma sent us out.

A whirlwind few days. A showing, A funeral. Many condolences. Many tears, witnessing my strong stoic Grandpa break down in tears for the first time in my life. My brain had a hard time processing everything – I felt like there was a brick wall in the middle of my brain blocking how I really should feel. I felt horrible sadness because my Dad had just died in a horrible, horrible way. But I never let on how much guilt I was feeling because I felt more like a burden was gone. I didn’t feel like I was sad enough.

I was asked to speak at his funeral, but refused because deep down I didn’t know what I could say without being angry or sarcastic. I was angry our lives were messed up by this disease. I was sad because I never got to have my Dad when I needed him most. I was still angry at the entire situation and past decade of our lives. The realization of the events of the last decade all hit at once. It has been 18 years and it still comes at times.

When the grief finally hit, it hit in waves. Indescribable waves.

-Rebecca Smith

I do often wonder, what would have happened if that police chase never took place? I know it would not have been good, and truly believe it was divine intervention.

effect

My Dad was NOT the person the disease turned him into. I stress – my Dad was not a bad person. The disease was the bad person. My Dad was always in there, he didn’t go away. FTD caused all this and it took control of his brain and body. This disease broke up our family; it tarnished our childhoods. It continued to have a ripple effect through the years on many things.  I look back and as the saying goes – I wish I knew then what I know now. I know I could not have prevented this disease, I’m not sure we could have even intervened differently. But now, I know enough I can spread knowledge and understanding. Compassion. Share experiences to help others. I can also live prepared for anything life throws me.

I’m still angry at FTD because it left us with memories of horrible things – we were left to clean up the aftermath. My siblings and I were robbed of the way life is supposed to evolve. I’m angry I missed out on normal Dad/Daughter stuff. I couldn’t call him to ask him to help me fix something. I had to do it all myself. I’m angry FTD chose MY Dad. I’m angry for him because he was robbed. He never got to grow old, he never got to meet his grandchildren, and he would have been a more awesome grandpa than dad. 

It’s been 18 years now and I’ve felt sorry for myself many times. The emotion and grief will always be there. I went through many “Why, God?” moments. You know, it’s hard to find a real answer when you’re angry and grieving. I grew up and matured quickly in a short time. While my peers were planning which bars to hit, I was planning what nursing home to place my father in. It took maturing to look at life holistically. I do think the experience caused me to view things in a more analytical and critical way. During this experience, I learned to view the world not as a self-centered teenager/young adult, but to see others as humans, with feelings. Life is not just about me.

I do believe every one of us is placed on Earth with a purpose – good or bad, even if this purpose is not felt or seen for generations. I found solace in believing my Dad was put on Earth for this reason. He is one important step in a purpose, and without him, it will not be possible. To the outside world, my Dad became the crazy person in town everyone wanted to avoid… if people only knew and understood what was happening behind closed doors at any given time, I would hope they would learn to be a little more compassionate and know it is important to treat everyone as a human. 

I spent much time with my Grandparents during this, and bonded with them on a unique plain above just being their granddaughter. I came to realize my Grandparents were more than just Grandma and Grandpa, they were individuals, parents, faithful. They didn’t judge any of those we encountered and were always humble. I don’t think I even realized many of the lessons until I became a parent when my daughter was born the next year. It took my realization, lessons from my experience with my dad to an entirely new level. Full circle realization of life, love, faithfulness, humbleness. (It also took hearing my Grandpa say S*** that one time to realize he was a person outside of being Grandpa!!! ☺)

I, too, live with worry because FTD has a genetic component. Much more is known about it now than in 2004, but there is still no cure. I’m getting very close to the age my Dad was when I believe he started exhibiting symptoms. Closer to the age he died. I fear because I’m so much like my dad, I am predisposed to FTD. I live in fear I will someday put my children through what I lived through. I fear my children will treat me how I treated my Dad. I have talked with my oldest and told her if something was ever to happen, what it’s ok to do.

I scare myself every time I forget something, or can’t comprehend something quickly. When I get in the store and forget everything I was going for or they change things around and I get lost. When my anger builds and bursts out. I’ve considered genetic or DNA testing, but not sure if I really want to know. I do silly things like take various routes to and from work just so my brain keeps on its toes. I do crossword and logic puzzles. I write, I journal. Whatever I can to keep my brain active. 

Medicine has advanced in the last 18 years. While I know there is no cure, I pray those affected may have better opportunities to manage symptoms, or at least get early detection to give them and their families better quality end years. I pray for the Willis family knowing the path they are heading down and may they all have strength during this horrible process. I do hope that since there is now a celebrity name attached to this disease, it will get more attention, funding and research. It is a horrible disease and my heart hurts for anyone caring for or suffering for this disease.