You or someone you know battling this disease?

Ever feel alone?

I pray the words in this poem I spoke at last year’s walk find you, comfort you, and leave you without a shadow of a doubt… You are NOT alone. 

Dear Mom – A Spoken Word of my journey with dementia

What others have said after hearing it:

• “I’ve never had anyone speak so clearly to what I’ve felt all of these years [battling this disease]”
• “You spoke to my soul”
• “It gives me permission to feel what I’ve felt and to share my story”
• “You said it all, there’s nothing more to say”

***A few words from Deanna, my lovely wife***

Going through my grandfather’s death and my mother-in-law’s diagnosis with dementia have been life-changing events for me and my husband, Schuyler.  We are long-distance caregivers for my mother-in-law and have often felt overwhelmed and alone, like many others dealing with a loved one who has been diagnosed.

Joining the Walk to End Alzheimer’s community has given us a way to use our passion and skills to help the broader Alzheimer’s Association increase awareness and raise money for a cure.    

Let me start by saying I don’t consider myself a fundraiser. 2018 was my first year to ever fundraise.  It was, and still is, hard to ask for money, even when it’s a cause you believe in. If you feel the same, don’t let that stop you - over the past 4 years we’ve raised over 130k!

Help us get there by joining us on the walk, in prayer/spirit, and in a donation to help us reach our goal of 30k.

1. Join the team and come walk with us: http://act.alz.org/goto/kaye-rock
2. 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.
3. Help us reach our goal of 30k by donating to our page: http://act.alz.org/goto/kaye-rock
4. Share it with other people who you think would want to be part of this cause.

We walk for a cure.  We walk together.  We walk for each other. We WILL create a world with survivors of this disease.

------ 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, but on the other side of the country. We’re long-distance care givers and she no longer responds to phone calls, Alexa, video, or any other form of virtual conversation.

Ultimately, I thank God every day I get to hear her laugh, 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.