Jul
22
Sarah’s influence on the birth of COYOD
by Emily in COYOD
We first met Sarah Krueger back in January due to a happenstance that ended up being pivotal for Spoke Your Mind’s mission. Last December Max and I spent a day in the downtown Seattle REI bicycle section doing research and figuring out what the hell we all needed for this (at the time) idealistic endeavor. The poor victim that day was salesperson Robert, who patiently listened to all my outlandish questions that painted “amateur” on my forehead. After asking Robert advice for how to carry and protect a semi-pro camera and computer, he raised his brow and asked why we needed all this junk for a bike ride. I explained the purpose, which at the time was focused just on Young Onset Alzheimer’s. After jotting down notes and prices, we said thank you to Robert and left.
The very next day, I needed a new bike tire because I rolled over a screw. So I popped back into REI, and dear friend Robert was there. He helped me with my tire selection and as he was ringing me up he said, “You know, I was thinking about your project after you left. My girlfriend’s mom has dementia. It’s not Alzheimer’s, but let me give you her info because I know she’d love to talk with someone.” And that was the beginning of COYOD (Children Of those with Young Onset Dementia). In conjunction with the Sarah discovery, we had a conversation with Max’s mom Beth about the labeling of Alzheimer’s disease because nothing is absolutely certain until autopsy. So why narrow it to only Alzheimer’s? When the reality is the symptom of dementia impacts families the same regardless which disease is diagnosed. Beth also helped us think of focusing on a specific population to serve, giving the example of a woman who started a site called “Alzheimer’s Spouse”. After thinking about it, we realized we want to find other young adults in our situation. From this, we broadened our mission to Young Onset Dementia, and narrowed the target population to children. And voila, Spoke Your Mind.
So we met up with Sarah back in January, and after hearing her story over lunch Max and I left feeling uplifted and more clear than ever on the purpose of Spoke Your Mind. Sarah is an inspiration. Being an only child, the responsibility of taking control of her mom’s life situation fell on her shoulders. Sarah was living in Seattle with Robert when her mom began to show symptoms of dementia. Her mom was living with and taking care of Sarah’s grandmother who has Alzheimer’s in Memphis, TN until Sarah moved them up to their current beautiful dementia care home in Lynwood, WA. When we met Sarah in January the doctors diagnosed her mom with Frontotemporal dementia, but the latest is now Alzheimer’s.
This last Monday we met up with Sarah and drove out to visit her mom and grandmother in Lynwood to capture some footage. We had a great time getting to know Caroline and Deborah. Here’s a pic below.
Caroline, Max, Emily, Sarah and Deborah
Sarah’s story is powerful and will undoubtedly help others going through a similar situation. We are so grateful we connected with her while we were back this month. Thank you Sarah!