I have been told I’m known around Livingston County as the “crazy Alzheimer’s lady,” and I am perfectly OK with that title. I have been a volunteer with the Alzheimer’s Association for nine years and I will continue to be until the day I die. Or until we find a cure. Whichever comes first (hopefully the latter).
My Grandma, who I call “Chupe,” was diagnosed with Alzheimer’s disease when I was 21 years old. I withdrew from Eastern Michigan University and moved back home. My mom retired early as a schoolteacher with Livonia Public Schools. We had no idea what we were in for, but in that moment we knew we had to do some hard life halts and take care of her, whatever that entailed, because all of our lives, she had gone to any length to take care of us. That woman was (is) my hero and my very best friend.
Mom and I began our journey as her sole full-time caregivers and made a pact to keep her at home. And for 15 years, until we were by her side and watched her take her last breath, we did just that.
It was an ongoing battle over the years to try and get help for my mom and me. And through many different experiences I learned just how flawed our healthcare system is. Simply put, there is no help for the caregivers. And I had finally had enough. I never wanted to another family to go through what mine had. So I made the decision to become an advocate and I went all in.
Every year I attend my State Advocacy Day and this past March attended my third National Alzheimers Advocacy Forum in Washington, D.C. I work with elected officials, from both sides, with one common goal in mind: To End Alzheimer’s. All of my members of Congress at both a state and federal level know me by name, and I make damn sure they know Chupe’s.
There is nothing more empowering than to work in a bipartisan matter, fighting a disease that has no prevention, no cure, and no way to stop it. There are no survivors. I cannot put into words how I feel about this group of advocates and volunteers from across the country. We are all oddly connected by this godawful disease, but we all fight the same fight, together.
The purple movement is nothing short of awe aspiring. Along with advocacy, I am also dedicated to fundraising. Since year one, I have been the team captain of “Team Chupe!” And every year, in her honor, we are a top team for the Brighton Walk To End Alzheimer’s.
This year I will be co-hosting the Second Annual Gatsby Gala on Aug. 15 at Brewery Becker in Brighton. Last year we raised $5,250, and this year we are hoping to raise $10,000. It’s an evening of dancing, drinks, food, giveaways, a cigar bar and the most fun flapper dresses, with all proceeds benefiting this very deserving cause (www.brightongatsbygala.com).
This will be our 9th year in Brighton doing the Walk To End Alzheimer’s, the association’s signature fundraising event. And the event that has my heart. It’s a day where our community comes together as one to honor our loved ones and to simply have hope. Walk is my most favorite day of the year, and I encourage everyone to experience it. This year, on Oct. 5, it will once again be in Downtown Brighton on Main Street. (www.alz.org/walk).
I write this after walking in Brighton’s 4th of July parade, wearing knee-high striped purple socks, a purple tutu, purple chucks, and a purple #EndAlz cape. And yes, I am 38 years old. I will talk to anyone and everyone I can about this disease and I will never shut up about it. Not until it is recognized as the public health crisis it is, and, more importantly, something is done about it. Maybe I am the crazy Alzheimer’s lady. And maybe someday, is you or someone you know is affected by this disease, you’ll be able to look back and say “thankfully that girl from Brighton helped find a cure.” #EndAlz.
Alzheimer’s Ambassador and Brighton resident Lauren Kovach is co-chair of the Second Annual Gatsby Gala at Brewery Becker in downtown Brighton. For more information on the event, click here.