Good morning, thank you so much for having me here—it’s truly an honor to get to speak to all of you today, and I am so very grateful for the time and energy you put into every Walk and Longest Day.
Fun fact: I maybe ate almost an entire bag of chocolate and goldfish the other day thinking about being in front of such a large group of people. Despite my 5 seconds of Association fame with my purple tutu and the thank you going out, I still get nervous speaking in front of large groups of people. And though I’ve built this comfort over time, I haven’t always been as open about my mom’s experience with Alzheimer’s.
Allow me to elaborate a little. When I was 15, my mom was diagnosed with early-onset Alzheimer’s at the age of 50. The once bold and fiercely independent woman I knew quickly became a stranger to me. My mom has always been known as a force to be reckoned with, and so it was very odd to watch her go through the initial stages of Alzheimer’s. I was a freshman in high school at the time, and it actually wasn’t until I was a junior that I shared my mom’s diagnosis with anyone.
In fact it was only out of necessity that I told someone to begin with—my dad needed to go to the ER, and I was worried I might have to miss work to take care of my mom. I remember pulling my boss, Carol, aside—Carol has known me since I was about 3, and I was barely able to get the words out. I remember her shock as I said, “My mom has Alzheimer’s—that’s why I might be late and I don’t want you to have to worry about it.”
Carol has always been such a strong positive influence in my life, someone I can trust with anything, but I’d kept this to myself, not just from her but from everyone, because I didn’t know how to start that conversation:
How do I explain to Carol that my mom can’t be left alone or make her dinner? That while my dad is in the ER, I need to make sure she’s okay?
Bigger picture, how do I tell anyone that my mom forgot my name?
If I say my mom has Alzheimer’s, how will they react?
Will they treat me differently? Will they treat her differently?
With all these unknowns, my solution became not to tell anyone. It’s scary enough to say, “My mom has Alzheimer’s. She’s confused and is starting to forget things.” It’s even scarier to share the real truth about what happens as Alzheimer’s progresses.
In my speeches, I often tell the story about how my mom and I once got lost on a ride home from the airport. I leave out yelling at my mom, insisting that she needed to find the way home, angrily snapping at her:
“You are my mom, the parent.
Be an adult.
You’re the one supposed to figure this out!
It is NOT my job to take care of you!”
As we yelled at one another, tears streamed down our faces. We were confused and lost, terrified of not knowing how we were going to find our way home. However, that terrified feeling didn’t disappear when we got home. Instead, I was terrified because she wasn’t just forgetting small things anymore. She was becoming a different person; her personality was changing.
This amazing woman, who I have had complete faith in, who was supposed to help me, guide me, didn’t know my name, and I was terrified of what was to come.
She thought we were trying to trick her. She was scared of her family, the people who wanted to take care of her, and I didn’t know how to share that with anyone. I didn’t know anyone who had dealt with Alzheimer’s.
I didn’t know if anyone would understand if I said, “My mom tried to hit my dad the other day. She’s been fighting back at him when he tries to help her, and she’s even been trying to bite him. The weird thing is, when she goes to bite him, if we move her arm in front of her mouth, she will bite her own arm. She doesn’t even seem to realize she’s hurting herself.”
As I finished my homework during my prep period, should I just toss out, “I think my mom doesn’t know how to use the bathroom correctly anymore. She doesn’t seem to flush the toilet, and she’ll sometimes even leave toilet paper she’s used hidden in drawers. I don’t think she knows how to take care of herself.”
When I heard a friend’s parent has passed away from cancer, was it so terrible that I briefly thought my mom would probably much rather have passed away sooner instead of having to go through Alzheimer’s?
Saying, “My mom has Alzheimer’s” is scary enough.
Sharing the real truth and the real feelings about what happens when she has Alzheimer’s is terrifying.
I think this instinct not to share comes from a place of love—this is not how I want people to remember my mom; I don’t want them to think that she isn’t able to take care of herself. Because this isn’t my mom anymore. I know that she’s there somewhere, but Alzheimer’s has taken away the mom I know. I want to protect her and protect the memories people have of her.
It’s terrifying. It’s scary. And hell, it hurts. A lot. But it hurts even more when you don’t have someone to talk to. Someone to share it with. Someone who can say, “I hear ya. I wish I could say something other than Alzheimer’s is sucky, but honestly, it sucks, and I’m here for you. Whenever.”
And that is where you come in. With each Walk, each Longest Day, you give the people who might never have had the courage to say, “My dad has Alzheimer’s.” or even “I have Alzheimer’s” a space to do so. You give them a community to connect with.
It still hurts, and it’s still scary…but it’s a little bit easier to go through with people on your side. It means that at a walk, maybe I’ll find someone that I can actually tell that my mom has hallucinations. Or that we had to admit my mom into the psych ward at the hospital so they can figure out her meds so she stops getting so angry.
Every single one of you in this room gives people impacted by Alzheimer’s a support system, a place to tell the stories we are too scared to share at any other time. The first year that I wanted to walk, I ended up flying home for my mom’s funeral. I remember participating in the Blondes vs. Brunettes game that spring, and it was such an oddly emotional event for me. I was in tears before the game began, wishing my mom could be there but also feeling so lucky, surrounded by amazing people and feeling so proud to be able to have played for her.
When I moved to Chicago, the very first time I spoke at a walk, I was able to do so with my aunt and cousins present. I was able to walk with my mom’s sister—and I was able to share more stories with my younger cousins about their aunt. They never got to know her when she wasn’t sick, and every Walk we participate in gives my family yet another chance to remember how great my mom was and to share the stories we never want to forget with each other and with our friends.
I honestly relish the opportunity to speak and attend events, because it means I get to share my mom’s story, I get to make her proud, and the events you all host, each Walk, each year on the Longest Day, you give every person participating a chance to remember someone they love, a space to talk about someone they care about, the courage to share something new.
So as you get ready to launch this season, to kick off your walk and longest day prep, please know how important what you do is. Every chance you give someone to share a story, to share their “why,” who they’re fighting for makes the scariest parts of this disease seem a little easier to tackle. No one will ever say, “Oh yea, Alzheimer’s, that’s a walk in the park,” and I do really hope (and will continue to fundraise and advocate) for the day that we have a survivor flower. But until then, and even then, thank YOU for giving us the time and space we need to have the courage to tell our stories, to be brave when we don’t really want to be, and to find a community that we might not have known existed but that is indeed the one we need.