What are you most afraid of?
On a beautiful Thursday morning that followed three relentless days of rain, I found myself distracted in one of my many meetings that day. My phone buzzed on the table, reading Silverado, my mom's memory care facility. My heart skips a beat.
Maybe she's missing me and it’s a call for her to say to say, hi.
Maybe they just want to let me know she had a good day.
My stomach sinks and my chest tightens... It's never a call to say, “hi”
“It's so-and-so at Silverado. It's not an emergency, but I definitely need to talk to you about what transpired this morning. Your mom has been involved in an altercation where she hit, kicked, and bit a number of caregivers who were getting her cleaned up. One caregiver fell, hit her head, lost consciousness, and was sent to the hospital.”
My mind just can't comprehend how my sweet little 5'7” mom who walks tenderly with tiny steps, who taught me unconditional love was a real thing, and who lights up an entire room when she laughs could BE the same person this woman is talking about.
How is this possible?
What do I even say to this? I'm sorry. I'm sorry for those caregivers. I'm sorry for my mom. I'm sorry for myself.
What am I most afraid of? A phone call...
The constant waiting for the moments when all I can do is helplessly say, “I'm sorry” and pray that they will continue to love and care for my mom. Because the last alternative is for my mom to be drugged to the point of non-existence, and I honestly can't picture a world where I'm able to live with that.
Enough is enough. Alzheimer's and dementia take so many of our loved ones away, and frankly I'm tired of feeling helpless. Last year we raised $35,000 in 6 weeks to end Alzheimer's. With Mother's Day just in the rearview mirror I'm setting my sites on raising $50,000.
In the words of John Lennon, “You may say I'm a dreamer” but today I imagine a world when instead of walking to end Alzheimer's, we walk with those cured to celebrate how we finally beat it once and for all.
I imagine a world where I answer the phone and it's my mom, “I just called to say hi”
On October 26, 2019 We are going to Walk to End Alzheimer's for my mom, for the loved ones that are sent our way, and for the hope that one day soon we’ll walk to celebrate our victory over this horrible disease. I invite you to join my wife and I by joining us on the walk, in prayer/spirit, and in a donation to help us reach our goal of 50k.
- Join the team and come walk with us: http://act.alz.org/goto/schuyler
- Send me a picture of you with your loved one and I'll add it to our poster that we'll take on the walk
- Help us reach our goal of 50k by donating to our page: http://act.alz.org/goto/schuyler
- Share it with other people who you think would want to participate in the cause
------ My story of my mom and our battle with dementia ------
As you may or may not know, my mom was diagnosed with dementia at the age of 66.
It is one of those diseases that promises you plenty of time to prepare, plenty of time to be ready, plenty of time to...I don't know, accept it. And yet, what started out as misplaced keys all of a sudden becomes the inability for simple conversations, dressing, or even sleeping. And you can't for the life of you figure out what happened to all that time you were promised.
It was the summer of 2017. I'd just been promoted to manager early in the year. I'd just got back from a week long yoga retreat in Maui. I'd just been to Chairman's club. I'd just spent two weeks with my dad at the Montreal Gran Prix and a week exploring Scotland. I just attended an amazing leadership training in San Francisco where my team took home the trophy.
And then on July 5th, a perfectly beautiful NYC summer day, I just got a phone call. “There's been an accident with your mom's partner, he's going to be in the hospital for a while and your mom can't stay here. If you're not able to pick her up by tomorrow we'll have to call adult protective services.”
I was on a flight to New Mexico the next morning to begin one of the most difficult months of my life.
My mom was my greatest champion. In high school she made sure I got to all my football practices, went to every game, and cheered all the way until the last buzzer. I could very well have been the worst football player in the history of high school football, but by the way she cheered you'd think I was the greatest!
She always found a way to support my dreams despite making a teacher's salary in New Mexico, which is almost laughable. I remember almost running out of money while traveling around Australia and New Zealand during my college year abroad. I told her I was going to cut the trip short and she said, “Oh no you don't, you experience this as though this is your only chance!” There was money in my bank account the next day.
She might have been the most accepting person in the world. She made a career of helping the kids who other teachers and society gave up on. She changed so many lives and hearts because she cared enough to do something when others didn't.
So there I was taking care of her. Doing a crappy job AND the best job I knew how to do. Dementia has a way of transforming a loved one. Making kindness into a scary kind of angry. Taking consistency and breaking it into million chaotic shards. Reaping frustration and irritation out of calmness.
And I wish I was just talking about my mom, the truth is that I could easily be describing myself over the course of that month. I won't go into all the details, but the story is filled with heart breaking moments and ones I will cherish forever.
My mom is now safe in a memory care facility. I thank God every day she remembers who I am, because I don't know how many more of those days I will have. I once heard that when someone has dementia they don't lose a part of themselves, that part has just snuck off to be with God a little early - I hope to truly believe that one day.
Thank you for helping us advance Alzheimer's support, care and research!
I have raised
Elite Grand Champion