This morning I opened my Facebook notifications and found that I had been tagged in a new trending post that intended to spread awareness and hope for Alzheimer’s disease and other dementias. The trend is that participants post a song that they feel relates to Alzheimer’s in some way or has a reflective message that reminds them of the disease and gives hope and energy to the cause. They then “pass” the challenge on by tagging a friend or family member that they think has something to post.
It’s a brilliant idea, and I posted immediately after with Bruce Springsteen’s hit song “Born To Run”. I wrote a blurb on Facebook about why I chose it, and then realized that this small anecdote is such an integral part of my story and connection to Alzheimer’s disease.
My Nona, Esther DePasquale, was diagnosed with Alzheimer’s when I was around 9 years old. She lived at home for the first few years of Alzheimer’s and required minimal care at first but eventually needed so much assistance that the best thing for her was to move her to a nursing facility. During those first few years, my mom would wait for us to get out of school and give us some time at home, and then get us all in the car to go to Nona’s house.
My brother, sister and I would bring our homework, Gameboys or Polly Pockets and set up shop in the living room and watch television. My mom would talk to my Nona, help her eat or change and remember details from the day. My mom would then cook a meal for us which was always spaghetti or takeout from D&A or Steamers. We’d stuff our little kid faces and go run and get back to watching television or playing our new Gameboy games, and my mom would stay in the dining room and finish eating with my Nona and help her take a sip of her drink or take a bite of food.
I noticed everything that my mom did because even at 9 years old, I couldn’t believe the sacrifice and the heart my mom gave every single day to help her own mom be as happy as possible given the diagnosis that she received. My mom did everything she could to keep my Nona in her own house for as long as she could before it was too much and too unsafe to do so, and that took thousands of hours of pure time, but it also took a lot of patience, exhaustion, and positivity. Again, my mom did not only have to take care of someone living with Alzheimer’s disease, but also three kids under the age of 12.
At the end of each night, when my uncle would come home and take over the “night shift” as I thought of it, we would throw ourselves into the car and be practically sleeping until my mom would put her Bruce Springsteen CD in and we’d skip to our favorite track, “Born To Run”. I don’t think my siblings and I knew any of the words except the main chorus, but it didn’t matter because we had our air guitars and air drums and air pianos to keep us busy.
As we drove home in the dark at a “late” hour for a 9 year old and we could see the jack-o-lanterns in the fall or the Christmas lights in the winter, I thought about my Nona every time and about how much my mom did for her.
Little did I know that eleven years later, at age 20, I would be heading to a Bruce Springsteen concert at Gillette Stadium with my mom. It was a cool night in September and the sunset over the front of the stadium was perfect. After 4 hours of playing, Bruce finally played our favorite song and I sang along to every word and definitely teared up a little thinking about how much this little song was a part of my car rides when I was little.
Its reflective times like these that I think about the impact that Alzheimer’s disease has had on my life and the fire it has lighted under me to do something meaningful and worthwhile. I love being involved with the Alzheimer’s Association and my club at Stonehill because I can see how many other people have dealt with Alzheimer’s and how the power of a large group can cause a change.
We have an obstacle ahead of us in the fight to end Alzheimer’s, and that is finding a cure. The obstacle can and will be jumped over but it can only be done by sharing stories like this one and spreading a message of awareness and hope. The smallest gestures can affect people, just like the Alzheimer’s Song Challenge got to me this morning. I’ll always be in this fight, the fight to end Alzheimer’s, because the 9-year-old me would be begging me to keep going if that meant that someday soon we could find a cure. I’m doing this for my Nona, for my mom, for my friends and family and especially for all those 9 year old kids out there in their cars coming back from their grandparent’s houses blasting their own version of “Born To Run” that don’t yet know the long road they and their families are in for. Together, we can create a world without Alzheimer’s.
