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 the 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
#ENDALZ
5 comments:
I've just recently come across your blog. My mother developed early onset in her early 60s. I'm a social worker and reading your post about advocacy hit home, it's what we're all called to do, to work to make the world a better place. To find a cause that calls us and work to improve life for those affected by it. Thank you for the work you are doing for Alzheimer's and for reminding us that we all have a responsibility to make the world a better place for all of us.
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