By: Tracy Harding
Before I begin, I just want to say how honored I am to be able to share my story with all of you. The following is the mission speech I gave at this year’s Walk to End Alzheimer’s in McHenry County. I walked to honor both my mom and my aunt.
My journey began 10 years ago when my mom started having memory loss. We had her tested but the doctors said it was due to stress. As the years went on, the memory loss got worse. She soon forgot how to do the simple things that we all take for granted in our daily lives. She forgot how to turn on a stove. She forgot how to use a cell phone. She even started to struggle with how to brush her own teeth. In 2014, we went back to the doctors, but this time she was diagnosed with Early-Onset Alzheimer’s. She was 58 years old. Three months later, at the age of 62, her sister, my aunt, was also diagnosed with Early-Onset Alzheimer’s. Our families were devastated and my mom’s spirit was broken beyond repair. We had to continue to take away her independence, one of the worst being when I had to call the police to ping her cell phone after she got lost driving. She never drove again after that. I soon realized that to have any type of relationship with my mom, I had to start learning how to live in her world. A world that wasn’t fair, a world that didn’t make sense, a world that she had no choice that she was living in.
She went through the stages incredibly quick and soon began to forget how to dress herself – and even worse, take care of her personal hygiene. It became too much, so in 2017 we decided to put her in a memory care home. The week before we moved her, I went to visit her on Mother’s Day when I wasn’t feeling well. She must have known somehow because she put her hand on my head and said, “Is it better now?” It will always be one of the fondest memories I have of my mom after she got ill. In my heart, I knew I still had a piece of her left. Moving her into the home was one of the hardest days of my life. Yes, she still had some spunk left in her step, but I saw what this disease was doing to other people and I knew that she would not be that far off from it.
Unfortunately, this disease has pretty much taken all of my mom from us. I remember doing a speech a couple of years ago at the high school I work at about Alzheimer’s. I stood there in front of everyone and said, “I am terrified for the day that she will no longer know my name.” I do not know the last time I have heard it. She doesn’t say much these days and if she does it is incoherent. She is dependent on someone for everything and is wheelchair-bound. She sits in a chair most of the day and sleeps. When she does her open eyes, there is not much behind them because the smallest of tasks exhaust her mind. I don’t like to admit to it, but I often find myself asking “when will this be over?”
My mom turned 64 in September and I hate every time her birthday comes around because it is a reminder that this disease has stolen another year from us. I miss calling her on my way home from work. I miss her holding my hand when I would wake up from a surgery. I miss her beautiful voice when she would sing. I just miss my mom, yet she is still here. It is such an ironic feeling of grief that is so difficult to explain to those that have never experienced a loss with Alzheimer’s.
It is human nature to want to fix things. That is one of the toughest parts of being a caregiver or watching somebody live with Alzheimer’s because currently, we can’t. We all need to raise awareness about how this disease not only how impacts the people living with Alzheimer’s but also their families. We all need to raise the much-needed funds to find a cure to end Alzheimer’s. Simply put, we all need to fight. Like Jimmy V once said, “Don’t give up, don’t ever give up.” I know I will never give up. We WILL find the first survivor of Alzheimer’s one day! We must continue to forge ahead and be the voice for those that can no longer speak up for themselves. We must make the choice to wake up each day and fight again. We must remember that the “darkness part of midnight is right before the break of dawn” – and because of that, we must believe that we are on the brink of a cure!
I will never understand why my family was chosen for this path. But there is one thing I do know, because of this path I have some incredible people in my life. They are my strength. They are my light. They are the ones that remind me the sun will rise again and because of that and because of them, I will always be grateful to have joined this fight.
Take a moment and look at the people around you, they see you, they hear you, they feel you but most importantly they understand you. Please know that you are never alone in this journey and if you ever do feel alone, remember today, and remember what it feels like today because today, today we are all one as we fight to find a cure to end Alzheimer’s! Keep love in your heart, keep fighting and keep believing.
Much love to all of you. Thank you.