My heartfeels broken. I wanted to let everyone know that my dad passed this year. Ihesitated to make this post due to how overwhelmed I am with sadness, but aftersome reflection, decided it was important. A few years ago, I made the toughpersonal decision to share my family’s journey with Alzheimer’s. I wasn’t doingit for sympathy, I was doing it to bring awareness to how devastating thisdisease is in hopes that one day we find treatment and a cure so other familiesdon’t have to go through the hell that mine has.
My dad’s journeywith Alzheimer’s ended last night but mine has not. My family is just one ofthe millions of other families across our country who suffers/suffered becauseof the lack of treatment and cure. I am my dad’s legacy and I will continue tomake him proud. I will continue to fight and advocate for more research. I willcontinue to fight and advocate for caregivers. I will continue to fight andadvocate until we have a cure. Alzheimer’s ended just as ugly and hard for myfather as it started. In honor of the amazing person my dad was we must allcontinue this journey. It won’t bring my dad back, it won’t give me back theyears of my life I gave up taking care of him or heal the scars this journeyhas left on me, but it will prevent other families from having to fight thesame hopeless battle.
Taking care of mydad was my privilege and I have no regrets. I got to spend so much time withhim and make him feel safe and secure. I got to repay him for all the things hedid for me in my life. I got to show him how strong I was and that was becauseof how he raised me. I hope I inspired others with my story, and they pay itforward. I hope someone has read my posts and realized they aren’t alone, andthey can do this even though they never imagined they could. I hope my postsinspired more kindness and support for caregivers everywhere. I hope my postsbrought us one step closer to finding a cure. This whole experience has been sohard, but I will get through it. I will remember my father for the man he wasand not the heartache Alzheimer’s caused.
This is my dad’s story:
My dad was a tremendous athlete. He played high school football,basketball and ran track. He went on to play college football at William Pennwhich 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, itturns 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 offerfrom William Penn. He had an incredibly successful career at William Penn. Hewas 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 graduatedfrom college, the NFL Draft went from 17 rounds to 12 rounds. The DallasCowboys heavily scouted him and shared interest in drafting him, but ultimatelytraded a majority of their picks for the second pick in the draft to acquire adifferent running back named Tony Dorsett. My dad received some bad advice anddidn’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 andconnections. We still have the letters from the Dallas Cowboys, San Francisco49ers, and Seattle Seahawks inviting him to try out for their teams. When askedwhy he never went and tried out, he always said that he and my mom simplydidn’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 andcoach. He coached football, track and cross country for many years. Inaddition, he taught Driver’s Education, Physical Education and Health. He alsowent back to school and got his Master’s Degree.
Everything was going great for my mom and dad. They generously putmy brother and me through college, and couldn’t wait for the day that wherethey could retire and spend the rest of their lives enjoying each other and thethings they loved to do. Unfortunately, their love story does not have a happyending. The love they had for each other actually makes it that more tragic,yet incredibly beautiful.
Itwas sometime in 2009 when we started to notice something was just not right withmy 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. Atfirst, we thought it was depression. Some of his best friends and colleagueshad retired and he still had two full years to go. He went and saw a doctor andat first they thought it had something to do with depression or a lack of somevitamin in his system. Things kept getting worst. I remember going down to hisclassroom and it was unorganized and chaotic. That was when I realized howserious it was. I recall telling my mom that she needed to approach the schooland have a discussion. Something was seriously wrong with him.
She contacted the school and explained the situation. They put himon administrative leave and referred him to a specialist. (One of the fewthings they did right.) We went and saw the neurologist and that was when ourworld came crumbling down. It started with a diagnosis of Mild CognitiveImpairment. That was their way of sugar coating the actual diagnosis,Early-Onset Alzheimer’s Disease. We asked ourselves how that could possibly betrue; He was only 54 years old. The doctor was very nice and explained everythingto us and what this meant for the future. From not being able to ever workagain 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 thisday, my dad would have taken his own life on that very afternoon if he knew thetrouble he would one day cause for my mom. I know that sounds dark but that isthe honest truth. So we get a slow death sentence diagnosis and my mom and daddelivered the news to the school. They had very little compassion for a man whodevoted 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 myheart how they treated him and my mother. It shows a complete lack ofunderstanding of the disease and human resource skills. His bosses whom he hadspent many years working for and grew to be close friends with now distancedthemselves from him. He was essentially accused of him of faking his memoryproblems. The school was the one who choose that doctor in the first place andthen had the nerve to question the diagnosis. They wanted a second opinion. Wewere fine with that because we would have sought one regardless. They chooseanother doctor who gave us the same unfortunate, terrible news. Comically, theschool still didn’t believe my dad or two neurologists and wanted us to seeanother doctor. We did. Same conclusion.
Notonly did we get terrible news, we were treated like we were scam artists. Hewas not allowed to go back to work. He used all of his sick time and then wentout on disability. We had no calls from the school seeing how he was doing. Noone checked with my mom to see how she was coping with this all. He taughtthere for over 25 years and he was sent home one day and they acted like he wasan inconvenience. When someone gets diagnosed with cancer, the school ralliesaround them. They throw a benefit, they pray for them, they show compassion. Asit turns out, a diagnosis of Alzheimer’s disease doesn’t quite get the sametreatment.
Let me paint you the full picture of the person they thought wastrying to scam the system to get out of work:
My dad was a great a man and incredible father. He loved teachingmy brother and me how to play sports, was patient with us when we failed andalways encouraged us to do what made us happy. I never felt pressured to dothis or that, it was just unconditional love and support. He was a high schoolfootball coach and teacher and used to let me tag along with him wherever hewent. I would ride the bus to away games with the team, I would go to practicewith him in the summer, and when he had to wake up early to open the weightroom for his players, I was happy to get out of bed to go with him. He taughtme to work hard but always have a positive attitude. He instilled in me a levelof confidence that I carry inside myself to this day. I know that I can achievewhatever 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 footballplayers and students come back to see him after they graduated and moved onfrom high school. To see the difference that my father had made in their livesand to see the respect that they had for him was something I could recognizeeven at a young age. I am sure there were players who didn’t like him orstudents who didn’t appreciate him, but it was always remarkable to see howmany did. Don’t get me wrong, my father was no saint. He could yell at peoplewith the best of him, bad drivers brought out serious road rage, and I receivedquite a few spankings for misbehavior. However, all of the negatives pale incomparison to how remarkable he was.
It is very easy for me to identify his very best quality and whatI admired the most about him. It was the love he had for my mom. They met whenthey were very little. They attended first communion class in the second gradetogether. In high school, they began dating and by college they were married. Afew years 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 youand the boys. There is a reason our paths crossed, it was for you to make me abetter person and father. I don’t tell you enough what a wonderful person and agreat 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. Ihave never once in my life heard my dad yell at my mom or catch them fightabout a single thing. He would let her sleep in on Sundays, while he took mybrother and me to church. Then, on the way home, he made sure to stop atHardee’s and get her a bacon and egg biscuit. I am not sure how to evendescribe how happy she made him as words don’t do that sort of emotion properjustice.
The love my mom had for my dad is incredibly rare. The onlyblessing to come out of this nightmare of a disease is to witness unconditionallove at its very core. My mom has been with my father every step of thisterrible journey. From the initial diagnosis to the late stages we arecurrently experiencing. She has watched the man of her dreams turn into someonemy dad would despise. He can be mean, unforgiving, rude, nasty, stubborn andunloving. Throughout it all though, she has never given up on him or lost herpatience. She takes care of all of his issues that I won’t detail as I thinkthe man my father was, deserves that respect and dignity and also, because Ithink it would break everyone’s heart. Trust me when I say that my mom is anincredible person who has shown incredible strength and courage throughout thiswhole ordeal and the thing that keeps her going is her love for my dad and thebond they both share. It speaks to how great of man he was to see her stick byhis side. They truly meant it when they said “to have and to hold from this dayforward, for better, for worse, for richer, for poorer, in sickness and inhealth, to love and to cherish, till death us do part.” This year, on myparent’s anniversary, my mother posted a photo from her wedding with a simplecaption, “I will remember for the both of us.”
Alzheimer’s disease is a nightmare. It steals your mind beforeyour body is ready to go. It erases your memories and eliminates your abilityto say good bye to the ones you love. It takes your personality and replaces itwith someone who doesn’t understand empathy or love. The only cure forAlzheimer’s disease is death. There is no medicine to slow it down and at thepresent time, if you’re diagnosed with it, it isn’t if you will die, but whenyou will die and the hell you put your family and friends through while ithappens.
I never could have imagined how hard it would be to be acaregiver. Granted I (and my brother) do about half of what my mother does, butit is a constant struggle. From continuous attention and care and lack ofsleep, to angry stubbornness on a daily basis; it takes a physical and mentaltoll on you. Alzheimer’s disease adds an additional element, you slowly watchthe person lose their mind, forget who you are, while they lose their completeidentity. You do what you can to help them maintain some dignity and you try tobe patient, but it is something you struggle with every day.
It is weirdthough because for something I hate so much, this disease and taking care of mydad has taught me so much. It has taught me to be more empathetic and kinderbecause you never know what someone is going through. It has taught me howimportant friendships are and no matter what is going on in your life, youstill need to make time for others. Friendship and support can mean the worldto someone. The disease has caused me to love, admire and respect my dad evenmore which I didn’t think was possible. The strength, courage and grace heshowed throughout his journey was truly special. When he was diagnosed, I amsure he was scared to death, but he didn’t show it. Instead he was strong andcourageous to make sure his family was ok. This disease taught me the power oftrue love when I see the sacrifices my mother has made taking care of my dadfull time and the devotion, she showed to him. It has taught me that life isn’tfair. My dad was a good man and didn’t deserve this, but it happened anyways. Ineed to make sure to never take anything for granted and cherish every momentof life. Make sure people know how much you love them and how much they mean toyou. It has taught me the value of faith. It doesn’t make sense this was theplan for my father, but many people are taken too soon, and we must trust inour faith to get us through it. It has taught me that I am stronger than I everimagined and strong enough to get through this and continue to be an advocatefor a cure so other families don’t have to go through this. The end of ourjourney with Alzheimer’s this week taught me how strong my family is andemphasized the love we share.
If I had worked to raise awareness years ago and worked to raisemoney, would we be closer to a cure? Would the right medical research beenfunded that may have found the needle in the haystack? Could it have prolongedmy father’s mental life or made the late stages easier? Would more awareness ofthe disease have changed how my dad was treated? All questions I struggle withand 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 treatmentof 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 tofinally figure that out.
My father was my biggest fan and was incredibly proud of theperson I was and knew I would achieve great things. My father taught me that Ican do anything I set my mind to. Well my mind is now set on raising funds forAlzheimer’s awareness to help families and caregivers who struggle with thisdisease. My mind is set to work with all of the other people who showed couragelong before me to stand up to this disease. This post is the first step in myjourney of being an advocate for my father and an advocate for everyone elsewho has been touched by this disease.
With the help of some great friends, we are participating in the“Walk to End Alzheimer’s” fundraiser. The Alzheimer’s Association raises moneyto provide care and support to all those facing the disease, drives researchtowards a treatment, prevention and a cure and speaks up for the rights andneeds of people with the disease. Our team name is “You’re killin me Alz.” Thisis a play on a reference from a great sports movie, The Sandlot. My dad was ahuge fan of sports and also always had a sarcastic sense of humor. He wouldhave loved the team name. As stated earlier, the disease is a death sentenceand we hope the money we raise goes to help find a cure so the disease will nolonger kill anyone else’s family members.
I ask for your support in this endeavor and help honoring myfather. I ask for your support in raising funds to support caregivers. I askfor your support to help find a cure so other families don’t have to experiencewhat mine has. I ask for your support to find a cure so if this is my future aswell, I have hope. Please visit the page my team has set up and make a donationto the Alzheimer’s Association. After doing so, I would love for everyone toshare this post in an attempt to raise more awareness. Thank you for taking thetime to read my experience. Thank you to all my friends who have been on thisroller coaster with me. You know who you are and you know the stress that I cancause. Your love and support is amazing.
I miss my dad.
Thank you for helping advance Alzheimer's support, care and research.
I have raised
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