On Memory Day, March 4, at the Missouri State Capitol, advocates from across the state spoke with their legislators about establishing the Missouri Alzheimer’s State Plan Taskforce, fund Alzheimer’s grants for respite, and to Build a Dementia-Capable Workforce.
After our visits, we gather in rotunda for a Memory Day Ceremony. This year, I was asked to share some of my thoughts as an advocate. Here are my thoughts:
My Fellow advocates,
Some of you have been Alzheimer’s advocates for years, and for some of you this is your first time. For you who are first-timers, I have to warn you—advocacy gets into your blood.
Each of us has a story that brings us to Capitol Hill. The pinwheel flower shows your connection to the disease. I always select a purple flower because I have lost a loved one.
My husband Jim developed dementia at 49 years old. For the next ten years, the disease stole him away from me, his sons, and his grandchildren. He never met his youngest grandson.
Caregiving for a loved one with Alzheimer’s is on-the-job training for a job that you never wanted to do. From the time you wake up in the morning, until you wake up again the next morning, you are on-the-job. When Jim lived at home, I averaged about four hours sleep each night—and not always consecutive hours.
I was in my forties and worked fulltime. I was lucky to have an abundance of family support. Jim’s mom, his sisters, my mom and my sisters, our sons and daughters-in-law all pitched in to keep him at home for as long as we could. No matter how hard we tried to keep him safe, Jim kept wandering off.
When I made the heartbreaking decision to put Jim in long-term care, I never relinquished my role as his primary caregiver. My daily routine was to feed him, toilet him, and bathe him. It is safe to say that Jim had more family members dropping by the home than any other resident.
Becoming an advocate gave me power over a disease that made me feel powerless. I’ve been an advocate on the state and national levels for two decades. When more than 1,000 Alzheimer’s advocates wearing purple sashes storm our nation’s capitol, everyone notices! We hear “thank yous” and stories from passersby. We hear “go-get-’em” and “God bless you.”
An important part of being an advocate is building relationships with your senators and representative. That does not happen with one visit a year—it happens through district visits, mobile offices, emails, thank you notes, phone calls, using social media, and letters to the editor.
One of the best things I did was to join AIM, the Alzheimer’s Impact Movement. AIM provides the tools to make me the best advocate I can be.
Don’t let your advocacy for 2020 end here today; let it be a beginning. Take the power you have as an individual and become passionate about legislation that improves quality of life for persons with the disease and their caregivers. Let’s work together to end Alzheimer’s before our target date of 2025. Know that your voice is powerful, and you, individually, and all of you collectively can make a difference.
As an advocate, I do not vote red or blue, I vote purple. Being an advocate is not just what I do; it is what I am.
Copyright © March 2020 by L.S. Fisher