It was a year ago,
or was it two,
that she first realized she forgot,
to remember:
Remember to remember,
she was going
to lose
weight
Fine
thinking
as the first.
shortly ago then
She can't remember.
It is her nightly medicine
or is it the month.
Did she ask you? Or forget to ask, did you
Answer or not
it is no longer always clear,
Though it seems not important to hold
On to forgetting
To remember
at times the sky blue and the clarity,
in a moment.
The speakers in addition to Richard and the Senator among others included: Rocco Landesman, Chairman, National Endowment for the Arts; the Guest Poet, Stuart Hall who read poems about living with memory loss; Sunil Iyengar, Director of Research and Analysis, National Endowment for the Arts; Dr. Anne Basting, Executive Director, Center on Age & Community and founder, TimeSlips; Maria Genné, founder, KAIROS ALIVE! and Margery Pabst, Executive Director, Pabst Charitable Foundation for the Arts and author of “Enrich Your Caregiving Journey."
All of them were well spoken and articulate about memory loss and care-giving but it was Richard who brought the issue to life and who made the standing room crowd of Senate staffers and the public laugh and cry. So many of the people who attended the panel briefing on the state of Dementia Arts Research came up after the event and talked about how moving Richard's talk was.
I first met Richard at an Alzheimer's Foundation of America Conference in Dallas in 2006. It was the first time I had attended a conference on Alzheimer's where a person living with memory loss had spoken at the conference. Richard always pushed for including that voice. When I began organizing Dementia Arts on Capitol Hill, it was my great hope he would be able to attend and I organized the event around him.
When I first contacted Richard about speaking at the event, he knew I would need sponsors and he said, "Are you sure you want me? You know I can be considered quite controversial." As Richard predicted, when I was talking with a marketing person for one of the major Alzheimer's advocacy groups, the person asked about the speakers at the event and said, "You know Richard Taylor called me an angel of death." We talked it through and agreed that if we were living with memory loss, we might also have Richard's sense of urgency and frustration, at how most if not all the resources and funds raised around Alzheimer's, are put to use for a distant cure and not towards helping people today.
In the end, the Alzheimer's advocacy group, did help us to promote and get the word out about the event. I believe that although was difficult, that it helped the person to talk out how it felt to be described that way. The conversation was frank and honest and Richard loved hearing the story. I think this person's anger came in part from the guilt of knowing we really don't do enough. I know for myself that when I heard Richard speak, it always pushed me to work harder for people living with memory loss.
Below are a few of the remarks he made that day, shaped into a poem. Like so many people I am missing my friend Richard today, but take heart in his words and send to his family and all his friends thoughts of love.
Hello, My Name is Richard Taylor
It’s not complicated
understanding who I am
once you get past the stigmas.
I am Richard,
a whole human being
living with the disabilities
associated with the symptoms
of Dementia.
Please do not give up on me
when I do not voluntarily
communicate as you.
Assume the best
for me, and in me.
Speak to me
as if I am all here.
It is a moral imperative
to support those who
for no reason
of their own cannot
meet their own needs.
A clean bed, a warm meal,
surroundings that mimic a hotel-
these are the basic needs.
It is the higher level needs
you all best support.
The needs that bring a smile
to my face, a bounce to my step,
and a handshake, a hug, or a kiss
for you when you leave.
Hello, my name is Richard Taylor;
I am a retired psychologist
living with the symptoms
and diagnosis of Dementia,
probably of the Alzheimer’s type.
Why is it everyone
is so amazed when we
dance, sing, and write?
Could it be we have been
hitherto written off as being fully human?
As our symptoms increase
do our needs for happiness,
connectedness, friendship,
self-esteem decrease?
Of course not.
I will be a complete
human being until
about two minutes
after I have drawn
my last breath.
This event was made possible by Bader Philanthropies’ funding, formerly the Helen Bader Foundation and a leader in the fight against Alzheimer’s disease throughout Wisconsin. Big thanks to all the students at Altoona High School and their wonderful teacher Angela Roloson. Thanks also to Ella Shaw teacher extraordinaire, who organized the events and to her students at Durand High School.
So excited with get to work with talented Jalen Bell, the 2014 Poetry Out Loud, Arkansas State Champion and his family! He wrote that wonderful poem after our poetry session on Tuesday performing and creating poems with the people at Innisfree Senior Living Community in Rogers.
His younger sister Jaden also participated in the session as did his father Donovan. Jaden is preparing to take part in the National Spelling Bee. When I asked about her favorite word to spell, she said Pfeffernuesse, the German Christmas cookie. As soon as she replied one of the men in the group jumped up, went to his room and brought back a Pfeffernuesse! It was delicious!
Yes we also read the patron poem of the home, "The Lake Isle of Innisfree." The event was hosted by the Arkansas Arts Council. Big thanks to Cynthia Haas the Arts in Education Program Manager.
Poetry for Life is a pilot project to bring students who are participating in Poetry Out Loud to assisted living, adult day care and senior centers to perform and create poems with the elders.
