Olympic Gold & Silver medalist, ESPN & NBC sportscaster AJ Mleczko Griswold is taking her determination off the ice and putting it toward the fight to end Alzheimer's for her mother, who was diagnosed seven years ago at the age of 69.
A.J., tell us why you champion the fight to end Alzheimer’s.
My mom, Bambi, is living with the disease. She currently resides in a Massachusetts care home. My maternal grandmother also battled this brutal disease. I watched my mom together with her three older brothers care for their mom while she slipped away from them gradually until she passed away in 2005.
My family was hyper-aware that we may have to contend with this disease again. Granny was otherwise physically healthy while battling her disease, living into her 90s, and was diagnosed at an older age than my mom.
When my mom was diagnosed, our family felt a combination of emotions, including fear and sadness: For her, my dad, and for all of us and what we knew we would go through.
Tell us about your mom.
I have always been close with my mom. She was always so supportive of me and my hockey career; she and my dad would travel everywhere to watch me play. Before Alzheimer’s, she was always volatile, in a good way; passionate, funny, energetic with tons of friends and a great sense of humor. She was on all the school committees, a great athlete, and owned a clothing and jewelry store on Nantucket’s Main Street for many years, a fixture of the community.
My mom was also an incredible artist, but that passion is gone now. She won’t do any kind of art at all, almost as if the perfectionist in her knows that she will not be able to do what she used to. Some part of her brain understands that.
When my kids see her, I worry they will remember her this way and not the way she was: amazing, full of personality and on the ground playing with all the kids. I hold close the letters she wrote to them when they were little so that they will have those to read one day.
What have you learned on this journey?
I have been most surprised to learn that Alzheimer’s can affect people in very different ways. My mom, for example, now has aphasia, and has completely lost her ability to communicate verbally. This has been incredibly frustrating for her as well as everyone in our family.
It is a constant challenge to try to figure out what my mom wants to say — as well as know what she may or may not remember. I truly cannot imagine how terrified and trapped she must feel in her moments of lucidity.
While you come to expect certain things after speaking with doctors and doing a lot of reading, this disease plays the way it wants, and things are not linear. Not every day is necessarily worse than the day before. Mom will sometimes plateau and fall or climb or dip, always fighting hard for her past.
Everyone processes a diagnosis and journey like this in their own way. I have found it therapeutic to share my story with my community so that no one feels alone in their battle. Although it is not always the same path — everyone manifests the disease differently — we are all battling something similar as families, children, caregivers and friends.
My dad took care of my mom up until about a year ago, and now I visit mom often in her memory care home. Although the fact that she has lost her words has made this all infinitely more difficult and sad, I am happy that she is physically healthy, content, and that my sister and dad and I live nearby. On most days, she doesn't know us, but sometimes her eyes light up and she hugs me tightly and I know in that moment she knows who I am.
I live for those moments, but I miss the way she was. Who are we without our memories? I miss my mom. I miss her voice. I miss her frequent hugs. It is devastating and hard to explain to people that she is with us, but also not really with us.
Tell us about your fundraising event, Ice Out ALZ.
Years ago, my mom and I organized and hosted a fundraiser on Nantucket to support the nonprofit rink on the island – a cause my mother was very involved with and passionate about. I wanted to bring it back to benefit the Alzheimer's Association and other families facing this disease. Although my mom was unable to attend, it felt good on some level to put one foot in front of the other to try make a small difference. This year, a lot of my cousins were in attendance in support of our family, which meant a lot to me.
At the event, an evening that included a Cornhole tournament to raise awareness and rally the sports community to make a difference for those affected by Alzheimer's and dementia, we welcomed guests, and I shared my story. With the generosity of the Nantucket community, the event has raised more than $400,000 to support the Alzheimer’s Association. I am proud of our efforts, and I hope we are making a difference for families like mine.
What do you wish you had known before your mother’s diagnosis?
I wish I could have taken more videos of her with my kids, especially reading books. I had no way of knowing that my mom would lose her voice.
For me and my siblings, I want to do things I can today for my own health. I want to get involved in clinical trials, I want to be a voice for this cause and I want to do anything I can to prevent developing this disease.
I remember the times before the disease, but also recognize the smiles in some moments. I hold onto every single one of them. There are difficult days, but working toward a future without this disease for those I love makes it easier to keep going.
About: Olympic Gold & Silver medalist, ESPN & NBC sportscaster AJ Mleczko Griswold played hockey at Harvard University, where she led the Crimson to a national title. A hockey commentator for the NHL on ESPN and MSG Networks, she previously worked for the NHL on NBC, where she became the first woman to commentate for an NHL playoff game. Find her on Twitter and Instagram to learn more about the next Ice Out ALZ event on July 20, 2023.