A previous version of this article was featured on Maria Shriver’s blog, Architects of Change, on September 21, 2011.
Sadly, I grew up around Alzheimer’s. In 1981, my paternal grandmother was diagnosed with the disease. My dad, her only child, and my mother had an addition built on our home so that they could care for her with my grandfather. Gradually, she forgot our names. She forgot her name. She forgot how to swallow. She forgot everything. For 11 years, we watched her wither away. I learned at a very early age this horrible disease impacts more than just the person diagnosed. So, when we were told my dad had younger-onset Alzheimer’s in 2003 at the age of 63, I was devastated. We all knew what was coming. The horrible history we witnessed first-hand with his mother was going to repeat itself with my father. And there was nothing anyone could do about it.
For the first few years after my dad’s diagnosis, he lived at home where my mother and sister were his primary caregivers. I was living 1,500 miles away and served as a long-distance caregiver who called him daily to check in. Often times he couldn’t even remember his last meal, so instead I would ask him about things that happened years ago which were easier for him to recall. We frequently spoke of his travels and experiences, family vacations and shared interests like our love for the Texas Longhorns and Houston Oilers. His health declined quickly but before he moved to an Alzheimer’s care facility, I considered moving home to help care for him. I found it difficult hearing him slip away and shared my idea. In a moment of clarity he told me to stay where I was. “Moving home won’t cure me,” he said. So I stayed in Washington, D.C., but felt incredibly helpless and isolated. One evening, I shared my family secret with close friends and learned they, too, had family members with this horrible disease.
Drawing on the love of football with my dad and with the help of friends, I created Blondes vs. Brunettes (BvB), a powder-puff football game with the goal to increase awareness among young people about the disease and raise funds for the Alzheimer’s Association. In less than six weeks, my friends and I organized the first game in Washington and raised $10,000. Six months later my sister, Kate, hosted a game in our hometown of Houston and raised more than twice that. BvB is now organized in more than 30 cities across the country and nearly $5 million has been donated to the Alzheimer’s Association.
I never expected those father-daughter football moments would be the ones to make such an impact, but he always said my sister and I were winners. Perhaps we were destined to be Alzheimer’s Champions. Here’s how you can be a Champion, too:
1) OPEN your eyes. When my dad was diagnosed with younger-onset Alzheimer’s I didn’t know anyone my age that had a parent with this disease. More than 5 million Americans are living with Alzheimer’s disease – 200,000 under the age of 65 with younger-onset Alzheimer’s. Look around. If you don’t know someone that has Alzheimer’s, chances are you know someone who does.
2) Use your VOICE. While age is still the greatest risk factor, I worry that I’ve passed Alzheimer’s on to my children. I’m fortunate to have BvB as a platform to share my story and educate others about this fatal disease. You can help raise awareness by telling people about your connection to Alzheimer’s and talk to your kids about it. “What’s Happening to Grandpa” is a fantastic children’s book for ages Kindergarten to fourth grade.
3) Take ACTion. Alzheimer’s is an epidemic. It is the 6th leading cause of death in the United States and the only cause of death among the top 10 in the U.S. without a way to prevent, cure or even slow its progression. The National Alzheimer’s Project Act was passed unanimously by Congress in 2010 and signed into law in 2011 by President Obama, but we must help keep advocacy efforts moving forward. The H.O.P.E. for Alzheimer’s Act is our top federal priority for the 113th Congress. I urge you to contact Senators Elizabeth Warren and Edward Markey and Representative William Keating and remind them we need better services for families living with Alzheimer’s
4) Time to MOVE. There are countless ways to promote brain health. As a little girl, I used to participate in the Walk to End Alzheimer’s with my parents to honor my grandmother. Now my children walk with me in memory of their grandfather and great-grandmother. If a walk isn’t your speed and you’re looking to tackle Alzheimer’s disease head on, BvB Boston is here!
5) November is Alzheimer’s Awareness Month and Family Caregivers Month. Join the Alzheimer’s Association in honoring the heroes that battle this disease every day. And become a hero yourself by helping to raise awareness and wear purple. I love the shirts and hats from BvB Boston!
In the years since I founded BvB, I’ve moved from powder-puff player to coach of my own team as the mother of three little boys. My children are the inspiration I need to keep fighting for a world without Alzheimer’s. The end of Alzheimer’s starts with me. Please join me and help tackle Alzheimer’s disease.
Sara Abbott serves on the Alzheimer’s Association’s BvB National Advisory Board and is a co-founder of the WomenAgainstAlzheimer’s Network. She lives at 23 Summit Drive. Full story can be found HERE.