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Making Tired Eyes Smile® suspends for the moments
of storytelling the scientific jargon of the disease, Alzheimer’s. Once again
our friends touch a “normal” activity that empowers. The dreary observations of
increasing frailty vanish as a circle of friends break out of negative
stereotypes.
Making Tired Eyes Smile® is an approach to change
attitudes, expectations and behaviors in at least five groups. The creativity
documented in writing has the potential to overcome disbelief, prejudice and
fear that may exist in these populations. It offers a wider panorama to those
who may be caught in a narrow view of the disease and its impacts. The five
benefiting groups are:
1. the general population,
2. the professional caregiving
community,
3. the families,
4. the ones with the diagnosis
and
5. the
facilitators.
The general population
Our mass media dramatizes the disease with visual images
of frail bodies with coma-like stares. We know there is a lot of living between
the diagnosis and death. Alzheimer’s and other dementia problems have many
guises. The sojourners are more than these tired publicity frames. The labels
often presented to our public marginalize who these fine people are.
There are many advocates who are stretching the public
image boundaries of this unrelenting foe. This language arts program is another
vehicle to bring that positive message forward.
Reading the prose and poetry compositions opens others to
possibilities that still reside for this fragile population. These stories
document the expressions. They pull us into the daily path of thoughts,
feelings and memories. The stories record the enjoyment of our friends doing
something today connected to past lives.
Our general population needs balance to the news about
the journey. Stories and poetry can do this. Stories and poetry can weaken the
sticking power of stigma.
The professional caregiving community
The willing hands of the professionals who care for our
friends and family (when we lack the necessary skills) rarely are recognized
outside their facilities. Bringing Making Tired Eyes Smile® into the
home of these residents validates the hard work of these caregivers. A
volunteer is a statement to the worthiness and honor of what they do day in and
day out.
Though not meant as a time out for the staff, it does
give them a breather for half an hour. For this time, many of their residents
are together in a meaningful activity. The staff can relax into the
never-ending to-do list.
Volunteers are members of their team. The stories enhance
the therapeutic protocols. Helping their residents helps them.
The families
Many dynamics are triggered between family members when a
parent is diagnosed with dementia or Alzheimer’s. A lot of emotions are pushed
and released. Some words offer clues to the range of the complexity: anger,
alarm, arguments, apathy and abandonment. These unenthusiastic emotions are
balanced with acceptance, affirmation, assistance, attendance, and advocacy.
Some family members want this kept as a secret. What will people think?
Family members witness the successes of the storytellers.
Someone is modeling a communication style that offers a model for meaningful
interactions. They observe a community of friends sharing, laughing and
touching skills the family member may have dismissed as no longer available.
There are still things to do.
Some of the residents are separated from loved ones in
different states. A facilitator is a substitute “family member”. Over and over
again it is repeated, “Thank you for doing this for my mother. I just didn’t
know this was possible.”
The friends with dementia or Alzheimer’s
A circle of friends want to interact with people who
care, with people who are willing to meet them where they are, and with people
who see them as still vibrant and capable of creative contribution.
Though minds are gumming up and bodies are failing,
“something” remains. Together in a circle of friends that “something” takes
form. Lingering words are validated. Something so everyday from rich lives before
this journey appears again. It is fun. It is meaningful. It is joyous.
A few friends may never contribute a word to the story or
poems. And yet their eyes follow, they laugh when the group laughs and their
body language falls into participation. One of these silent friends showed her
adult child the storyboard, saying, “I wrote this.” And she did. Her sense of
being part of the community is documented.
One of the oldest friends in the circle is 94. It is
almost two years before she shares. We are writing a story about taking Sunday
afternoon rides. She adds: Not many people had cars. So a car ride was a lot
of excitement. Sometimes we would go for a picnic. It was “picnic-ish”. And fun
to go to the beach.
The facilitators
Many people would like to volunteer. But they don’t know
what to do. Many facilities would love volunteers, but don’t have the staff to
train a volunteer. The guide solves this dilemma. It offers a tutorial on how
to do it, what to do and all the supporting
aids. The volunteer now has a valuable activity, and the facility has a unique
program that highlights its commitment to care generously for its residents.
Making Tired Eyes Smile® comes alive off the pages
with the energy of the facilitator. There is no material profit. Yet the
facilitator brings change where change is needed. It is a part of the advocacy
for re-imagining who a person with Alzheimer’s remains. The facilitator
transforms a space in time that is poorly understood and underappreciated.
The facilitator is the witness to poignancy and
resiliency. A facilitator will be able to name the “something” that
remains.
Many who are touched by Alzheimer’s are offered an
expansion of the labels presented by the press. When we know a better path, we
are called forth to walk it. Ahead awaits the opportunity to bring something
bright into another’s life.
January 6,
2003 – A Diary Entry – A Cup of Coffee –
The healthcare providers announce their roles by their accessories. It is a
stethoscope draped on shoulders, colorful scrubs, a medical bag, a white lab
coat or a clipboard. The residents know someone is about to be pricked, probed
or prompted.
What could I do that would sublimely affirm my status
as a friend? How could I set our time together as one of conversation and camaraderie?
I chose a cup of coffee. Growing up, I saw coffee as
part of the ritual of friends gathering in my home to visit my mom and dad. It
was “hello” and “would you like some coffee?” in the same breath. Coffee was a
focal point for laughter, stories, conversations and repeat visits.
I walk in with a cup of coffee to greet my friends. As
I move to acknowledge my friends, I sip my coffee as though I am sitting at
their kitchen table. When the coffee cup is empty our creative time begins.
Can I prove a cup of coffee signals this message to my
friends? No, it is only a feeling. But the coffee tastes good and sipping seems
to work.
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