Reposted from Alzheimer’s Association Blog.
Susan Spencer, a former maverick entrepreneur, took over as general manager of the NFL’s Philadelphia Eagles in 1984 while her father, Leonard Tose, was the team’s owner. Susan remains the only female general manager in NFL history.
Today, Susan is living with Alzheimer’s, and her daughter Marnie shares their story from her point of view as both a daughter and caregiver.
My mom, Susan Spencer, was a true boss lady: a businesswoman, a female attorney and GM and VP of professional football team, the Philadelphia Eagles. She was a business pioneer, with dozens of ‘firsts’ as a female in the sports world. She was a role model for so many of my friends, and the center of my universe.
Alzheimer’s is a scary reminder that we cannot control our lives. When Alzheimer’s hits a family, it conjures many feelings — disappointment, loss, frustration — and creates a little bit of chaos. I learned this all when my mother was diagnosed with Alzheimer’s in 2018.
Part of my personal Alzheimer’s journey includes telling my mom’s story and listening to the stories of others, continuing to add value to my life as a daughter and caregiver. It reminds me of something my mom always said to Eagles players: “If you aren’t adding value, why show up?” She found the value in everyone and encouraged them to find it in themselves.
Not having my mom as a friend and support system as this disease continues to affect her has been a tremendous loss. It has left a hole in our lives that is impossible to fill. But I am opening myself up to education from the Alzheimer’s community and am slowly trying to fill that hole by sharing the lighter moments (like when my mom says she won’t be seen outside with me based on what I am wearing, especially if it’s my Dallas Cowboys sweatshirt instead of my Eagles one!) and the heavier ones (of which there are many).
As an only child, I’ve always been incredibly close with my mom. My mom was always moving, always doing, always in the thick of it. But Alzheimer’s disease doesn’t play nice: Mom has her good days, but she also has her share of bad ones. My daily goal is to give back to her as much as I can.
I am grateful to be her primary caregiver, and we are also lucky enough to have 24-hour care. At times it can be incredibly sad, an out-of-body experience for me as a single mother and caregiver for my mom, who is no longer the mom she was. My three teenage kids are learning tremendous lessons about supporting people you love. They are also learning how to keep the qualities that made mom who she was for most of her life — a vibrant, funny, hardworking person who gave back to others — alive.
It can be counterintuitive for any parent to rely on their children, but my mom has been gradually pushing back less. I find ways for her to feel engaged. I bring her along when I go to the bank; she wears her favorite pink business jacket and joins me for a meeting. These activities make her feel like she is part of something bigger than herself. As a former social butterfly, it’s important that she socialize and stay active for as long as she can. I hold close the unfortunate truth that sometime in the near future, she may not want to do these things any more. I hold on to what we have TODAY.
My mom is the reason I am a strong, independent woman. My mom kicked butt at work while making time for herself: being a wonderful mother, constantly traveling and not being afraid of success. I have always had a great respect for her work ethic. She taught me how to make the right sacrifices, how to be empathic leader and how to encourage my kids to take on responsibilities.
Alzheimer’s disease is not for the faint of heart. As a caregiver, you are a professional athlete. There are no winners in this game, but you fight for as long as you possibly can and as long as you need to. I fight against the disease because my mom can no longer give back the way she did for her entire life. I am continuing my life of philanthropy through her. The moments I spend with others being affected by this disease gives me reassurance that ultimately nothing is ever as good as it seems or as bad as it seems. We just keep soldiering on. We keep building connections. We are all in this together.
About Susan and Marnie: Philadelphia native and Penn State graduate Marnie Schneider is driven by family, charity and sports. Her grandfather, Leonard Tose, was the owner of the Philadelphia Eagles and also founded the Ronald McDonald House. Marnie is a mother to three teens and the author of the family book series “Football Freddie and Fumble the Dog Gameday.”
Susan T. Spencer was an entrepreneur and business professional whose companies reached annual revenues of $50 million. She was the first and only female to hold the position as GM of a NFL team, The Philadelphia Eagles. Susan added two more exclusively male businesses to her ventures, both in meat processing, which she owned and ran for more than 20 years. Spencer attended Boston University where she earned a B.A. She later received her M.A. in Education/Economics from Hofstra University and earned a law degree from Villanova University.