I have typed and deleted the first line of this post/story/rambling thoughts a couple of dozen times. The hardest part is knowing where to start the discussion. I am scared and I am nervous. But I guess here it goes… This is my experience.
I miss my dad. I miss him a lot. I can’t really recall the exact time that he left us, but I would guess it was a year or two ago. It was very slow and painful to watch. It started with just general confusion, grew to forgetting the right words, and ended with almost an inability to communicate. The real painful part is that it was his mind that slowly left us, not his body. If you saw him today, you would accuse me of being insensitive or over exaggerating his condition. He appears to be a fairly healthy 62 year old but that is only the appearance. You see, my dad was diagnosed with Early Onset-Alzheimer’s in his early 50’s and his brain has deteriorated to the point he can barely form sentences, his personality hardly exists, and the father I once adored is gone.
His story is a tragic one but needs to be shared to raise awareness for the disease in hopes of finding a cure one
My dad was a tremendous athlete. He played high school football, basketball and ran track. He went on to play college football at William Penn which is a small NAIA School in Iowa. He had interest from larger universities, but he preferred basketball so he waited before making a decision. Well, it turns out a six foot tall Center is not in high demand in college basketball, so when everything was said and done, he took the football scholarship offer from William Penn. He had an incredibly successful career at William Penn. He was all-conference for two seasons and in 1976, he was named an All American. In 2009, he was inducted into William Penn’s Hall of Fame. The year he graduated from college, the NFL Draft went from 17 rounds to 12 rounds. The Dallas Cowboys heavily scouted him and shared interest in drafting him, but ultimately traded a majority of their picks for the second pick in the draft to acquire a different running back named Tony Dorsett. My dad received some bad advice and didn’t hire an agent to help him with the entire process. Back in those days, the draft was largely regionally based, and athletes relied on local scouts and connections. We still have the letters from the Dallas Cowboys, San Francisco 49ers, and Seattle Seahawks inviting him to try out for their teams. When asked why he never went and tried out, he always said that he and my mom simply didn’t have the money to travel around the country.
He married my mom in 1976.
After college, he went on to become a very successful teacher and coach. He coached football, track and cross country for many years. In addition, he taught Driver’s Education, Physical Education and Health. He also went back to school and got his Master’s Degree.
Everything was going great for my mom and dad. They generously put my brother and me through college, and couldn’t wait for the day that where they could retire and spend the rest of their lives enjoying each other and the things they loved to do. Unfortunately, their love story does not have a happy ending. The love they had for each other actually makes it that more tragic, yet incredibly beautiful.
It was sometime in 2009 when we started to notice something was just not right with my dad. He would misplace his keys or forget plans. These were small things, but they were noticeable. He seemed very stressed and depressed about teaching. This was shocking as teaching and coaching had always been his passion. At first, we thought it was depression. Some of his best friends and colleagues had retired and he still had two full years to go. He went and saw a doctor and at first they thought it had something to do with depression or a lack of some vitamin in his system. Things kept getting worst. I remember going down to his classroom and it was unorganized and chaotic. That was when I realized how serious it was. I recall telling my mom that she needed to approach the school and have a discussion. Something was seriously wrong with him.
She contacted the school and explained the situation. They put him on administrative leave and referred him to a specialist. (One of the few things they did right.) We went and saw the neurologist and that was when our world came crumbling down. It started with a diagnosis of Mild Cognitive Impairment. That was their way of sugar coating the actual diagnosis, Early-Onset Alzheimer’s Disease. We asked ourselves how that could possibly be true; He was only 54 years old. The doctor was very nice and explained everything to us and what this meant for the future. From not being able to ever work again to the harsh reality that there is no cure for Alzheimer’s disease. Looking back, we had no idea what we were in store for. I am convinced to this day, my dad would have taken his own life on that very afternoon if he knew the trouble he would one day cause for my mom. I know that sounds dark but that is the honest truth. So we get a slow death sentence diagnosis and my mom and dad delivered the news to the school. They had very little compassion for a man who devoted his life to helping students and had always made the school a priority. They thought we were trying to scam the system and to this day it breaks my heart how they treated him and my mother. It shows a complete lack of understanding of the disease and human resource skills. His bosses whom he had spent many years working for and grew to be close friends with now distanced themselves from him. He was essentially accused of him of faking his memory problems. The school was the one who choose that doctor in the first place and then had the nerve to question the diagnosis. They wanted a second opinion. We were fine with that because we would have sought one regardless. They choose another doctor who gave us the same unfortunate, terrible news. Comically, the school still didn’t believe my dad or two neurologists and wanted us to see another doctor. We did. Same conclusion.
Not only did we get terrible news, we were treated like we were scam artists. He was not allowed to go back to work. He used all of his sick time and then went out on disability. We had no calls from the school seeing how he was doing. No one checked with my mom to see how she was coping with this all. He taught there for over 25 years and he was sent home one day and they acted like he was an inconvenience. When someone gets diagnosed with cancer, the school rallies around them. They throw a benefit, they pray for them, they show compassion. As it turns out, a diagnosis of Alzheimer’s disease doesn’t quite get the same treatment.
Let me paint you the full picture of the person they thought was trying to scam the system to get out of work:
My dad was a great a man and incredible father. He loved teaching my brother and me how to play sports, was patient with us when we failed and always encouraged us to do what made us happy. I never felt pressured to do this or that, it was just unconditional love and support. He was a high school football coach and teacher and used to let me tag along with him wherever he went. I would ride the bus to away games with the team, I would go to practice with him in the summer, and when he had to wake up early to open the weight room for his players, I was happy to get out of bed to go with him. He taught me to work hard but always have a positive attitude. He instilled in me a level of confidence that I carry inside myself to this day. I know that I can achieve whatever I desire as long as I work hard. There is no limit to my potential. That is what he believed and that is the legacy I work for every day.
One of my favorite memories of my father was seeing old football players and students come back to see him after they graduated and moved on from high school. To see the difference that my father had made in their lives and to see the respect that they had for him was something I could recognize even at a young age. I am sure there were players who didn’t like him or students who didn’t appreciate him, but it was always remarkable to see how many did. Don’t get me wrong, my father was no saint. He could yell at people with the best of him, bad drivers brought out serious road rage, and I received quite a few spankings for misbehavior. However, all of the negatives pale in comparison to how remarkable he was.
It is very easy for me to identify his very best quality and what I admired the most about him. It was the love he had for my mom. They met when they were very little. They attended first communion class in the second grade together. In high school, they began dating and by college they were married. A few months ago I came across a card my dad gave my mom years prior, he wrote:
“Karen, I love you with all my heart. Each day I thank God for you and the boys. There is a reason our paths crossed, it was for you to make me a better person and father. I don’t tell you enough what a wonderful person and a great wife you have been. I love you each and every day with all of my soul. Thank you. Love, Jim.”
The letter speaks perfectly to the love that he had for her. I have never once in my life heard my dad yell at my mom or catch them fight about a single thing. He would let her sleep in on Sundays, while he took my brother and me to church. Then, on the way home, he made sure to stop at Hardee’s and get her a bacon and egg biscuit. I am not sure how to even describe how happy she made him as words don’t do that sort of emotion proper justice.
The love my mom had for my dad is incredibly rare. The only blessing to come out of this nightmare of a disease is to witness unconditional love at its very core. My mom has been with my father every step of this terrible journey. From the initial diagnosis to the late stages we are currently experiencing. She has watched the man of her dreams turn into someone my dad would despise. He can be mean, unforgiving, rude, nasty, stubborn and unloving. Throughout it all though, she has never given up on him or lost her patience. She takes care of all of his issues that I won’t detail as I think the man my father was, deserves that respect and dignity and also, because I think it would break everyone’s heart. Trust me when I say that my mom is an incredible person who has shown incredible strength and courage throughout this whole ordeal and the thing that keeps her going is her love for my dad and the bond they both share. It speaks to how great of man he was to see her stick by his side. They truly meant it when they said “to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death us do part.” This year, on my parent’s anniversary, my mother posted a photo from her wedding with a simple caption, “I will remember for the both of us.”
Alzheimer’s disease is a nightmare. It steals your mind before your body is ready to go. It erases your memories and eliminates your ability to say good bye to the ones you love. It takes your personality and replaces it with someone who doesn’t understand empathy or love. The only cure for Alzheimer’s disease is death. There is no medicine to slow it down and at the present time, if you’re diagnosed with it, it isn’t if you will die, but when you will die and the hell you put your family and friends through while it happens.
I never could have imagined how hard it would be to be a caregiver. Granted I (and my brother) do about half of what my mother does, but it is a constant struggle. From continuous attention and care and lack of sleep, to angry stubbornness on a daily basis; it takes a physical and mental toll on you. Alzheimer’s disease adds an additional element, you slowly watch the person lose their mind, forget who you are, while they lose their complete identity. You do what you can to help them maintain some dignity and you try to be patient, but it is something you struggle with every day.
It wasn’t hard writing about how great of man my father was or even acknowledging that the man I once knew is gone. I accepted that years ago before I was even ready to share his condition with people. The hard part to type and admit is how embarrassed I am that I felt the need to keep it a secret for so long, I let pride keep me from admitting the struggle I was going through and asking for help. I should have taken a stand long ago to advocate for a cure and raise awareness of the disease.
If I had worked to raise awareness 8 years ago and worked to raise money, would we be closer to a cure? Would the right medical research been funded that may have found the needle in the haystack? Could it have prolonged my father’s mental life or made the late stages easier? Would more awareness of the disease have changed how my dad was treated? All questions I struggle with and ask myself every day. I think a lot about how the school treated my father. I struggle with forgiveness and letting it go. I want to think their treatment of him wasn’t out of malice or spite, but rather ignorance of the disease.
This is why awareness is so important. It took me many years to finally figure that out.
My father was my biggest fan and was incredibly proud of the person I was and knew I would achieve great things. My father taught me that I can do anything I set my mind to. Well my mind is now set on raising funds for Alzheimer’s awareness to help families and caregivers who struggle with this disease. My mind is set to work with all of the other people who showed courage long before me to stand up to this disease. This post is the first step in my journey of being an advocate for my father and an advocate for everyone else who has been touched by this disease.
With the help of some great friends, we are participating in the “Walk to End Alzheimer’s” fundraiser on October 1st. The Alzheimer’s Association raises money to provide care and support to all those facing the disease, drives research towards a treatment, prevention and a cure and speaks up for the rights and needs of people with the disease. Our team name is “You’re killin me Alz.” This is a play on a reference from a great sports movie, The Sandlot. My dad was a huge fan of sports and also always had a sarcastic sense of humor. He would have loved the team name. As stated earlier, the disease is a death sentence and we hope the money we raise goes to help find a cure so the disease will no longer kill anyone else’s family members.
I ask for your support in this endeavor and help honoring my father. I ask for your support in raising funds to support caregivers. I ask for your support to help find a cure so other families don’t have to experience what mine has. I ask for your support to find a cure so if this is my future as well, I have hope. Please visit the page my team has set up and make a donation to the Alzheimer’s Association. After doing so, I would love for everyone to share this post in an attempt to raise more awareness. Thank you for taking the time to read my experience. Thank you to all my friends who have been on this roller coaster with me. You know who you are and you know the stress that I can cause. Your love and support is amazing.
I miss my dad and the wonderful man he used to be.
We have raised