This is the page to join Sallie's team for the Dupage County Walk to End Alzheimer's.
How appropriate is it that this year's walk is on our wedding anniversary? My parents didn't go to my wedding. They were both dead, and it's because of Alzheimer's. Mom died from Alzheimer's earlier that year after a 13+ year battle with the disease. Dad died 6.5 years prior, too early, as a direct result of playing the primary caregiver role, while the daily toll of this role caught up with him.
As I publish my 10th team site, I reflect on all I've learned as a volunteer for the Alzheimer's Association. Not only through the Walk but also in my advocacy efforts with the senate and congressional legislation and all the people I've met in my Alzheimer's network who have taught me so much.
While my lessons were so much more poignant and honest, living in the moment when mom literally could not remember that 'we just had this conversation' and that dad's lack of care for his health while playing 24x7 caregiver to my mom took him to his demise, I've learned a lot through my volunteer efforts that layer onto my real-life experiences.
- about the reality of how politics plays a role in the state of this healthcare battle
- about how decisions for pharmaceutical availability can be a financial one
- about how physicians are not well-trained to make a diagnosis for this disease that changed the entire course of my family's trajectory (and we never got a diagnosis)
- how the medical community is not well-trained to help with the family after such a diagnosis, perhaps leading towards a physician's lack of desire to want to make such a diagnosis (I can only speculate why we didn't get one)
- about the dangers for the caregiver if the caregiver doesn't take care of him or herself (actually, sadly, I'm the one educating others on that one)
- about how many other families experienced the devastation that we did and, like us, had no idea how to express it, explain it, or put a story to it to make it real to the rest of the world (I can only try now)
This scratches the surface, and yet I hope to keep learning more. I appreciate the Alzheimer's network I've organically grown through this process and hope that others in my situation can all have Alzheimer's networks of their own.
Alzheimer's creates a loss of self-determination. It chips away at a person's autonomy to choose the way they want to live, which they have taken for granted their entire life until that point, and then suddenly that freedom is gone. I appreciate research in the recent book by Dr. Jason Karlawish, The Problem of Alzheimer's, where he expresses, "what's a good life when you're losing your ability to determine that life for yourself."
Please consider donating if you can't attend this year's Dupage County Walk on 9/17. Together, we can end Alzheimer's disease. Please join the fight either by:
- joining Sallie's Team to walk on Sunday, September 17, 2023, at 10:00 AM Central
- donating on my walk page
- walking AND making a donation
Your donation will help to advance the care, support, and research efforts of the Alzheimer's Association.
Thank you for joining the fight against Alzheimer's!
Thank you for helping advance Alzheimer's support, care and research.
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