Home > Winter 2011-2012 Newsletter |
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An Annual Gathering
On November 4th, forty individuals
came together at the Chapter office
to attend our 2nd Annual Gathering
for People with Early-Stage Memory
Disorders.* We were delighted to
welcome our New York City clients
as well as those who traveled here
from Long Island, Connecticut and
upstate New York.
 The day began with warm welcomes
from our President & CEO,
Lou-Ellen Barkan, and Jed A. Levine,
Executive V.P. and Director of
Programs & Services. The morning
session that followed was a real
treat for our participants who were
given the unique opportunity
to talk candidly with a physician
about their dementia. All listened
intently as Dr. Veronica LoFaso
from the Weill Cornell Medical
College, Division of Geriatrics
and Gerontology, answered their
many questions about treatments,
medications, types of dementia,
MCI (Mild Cognitive Impairment),
current research, and ways to keep
healthy in spite of their diagnoses.
Dr. LoFaso’s calm and easy-going
demeanor was much appreciated by
the participants who felt that she
provided them with very thoughtful
and valuable information. As one
individual said, “I really liked the
doctor. She seemed so sensible and
understanding and she didn’t rush.”
After the medical session, a hearty
lunch was served by Chapter staff
and volunteers, which received high
praise. The participants also had
the opportunity during this time
to get to know each other a little
better, and many commented that
they hoped there would be more
occasions like this one to come
together and learn from one another.
It was clear to the group leaders who
accompanied their clients that we
must try to organize more events
such as the Gathering to give early-stage people additional opportunities
to be together and share their
experiences.
 The afternoon session was
conducted by Maureen Matthews,
RN, PhD who is the Director of
the Early Memory Loss Support
Program at the Stamford Counseling
Center in Connecticut. She is
also the creator of To Whom I May
Concern, an interactive theater project
that brings stories of living with
early dementia to life as the script of
those stories is performed by people
who have been diagnosed before
an audience of their peers, friends,
care partners, and professionals.
As Maureen encouraged our
participants to share some of their
stories about what it’s like to live
with dementia, a letter was created
which captured some of their
thoughts and feelings in words to be
shared with their care partners. The
letter they produced appears on the
opposite page.
And then it was time to say our
good-byes. During our wrap-up, the
vote was unanimous that Lauren and
I should start making plans as soon as
possible for a 3rd Annual Gathering.
On her way out, one participant
seemed to sum it up best when she
said, “I thought the whole day was
very good. I felt happy and secure
when I left, that I was valued…and
that means everything to me!”
To My Caregiver,
On November 4th, I joined a group of 40 people at the New York City Chapter of the
Alzheimer’s Association for the 2nd Annual Gathering for People with Early-Stage
Memory Disorders. In one of the sessions we talked about what it’s like to live with our
illnesses, and wanted to share some of our words with you. Once you’ve read this letter,
perhaps we could talk about who else might bene? t from reading it.
“I could do something yesterday… so just maybe I can also do it today.”
“Pay attention to me, even though I’m young. Just because I’m young doesn’t mean I
can’t have Alzheimer’s.”
“Let me enjoy things while I’m alive. I don’t intend to die so soon.”
“I’m very much aware of what’s happening. It’s not just our caregivers who are.”
“Don’t be afraid to talk with us about what’s happening to us. It’s good to have someone
who we can be open with.”
“You need to know who we really are and where we really are now in order to better
understand us.”
“We are still very viable people. We’re still very much here.”
“Don’t assume that I don’t know something… give me a chance.” “Don’t throw it in my
face that I might not remember. A lot of times I do.”
“You’ll understand us better if you listen when we say that we forget. Don’t just say ‘that
happens to me, too’.”
“It would be nice if you could sometimes be more sensitive and compassionate.”
“We have to recognize that living with this isn’t the end of the world.”
“Accept me as I am. Understanding is one thing; acceptance is another.” We had a wonderful day at the Gathering all being together and having the opportunity
to hear each other talk about what it’s like to live with dementia. We found out that we all
have a lot in common!
Thank you for caring.
* The 2nd Annual Gathering for People
with Early-Stage Memory Disorders
was sponsored by Janssen Alzheimer
Immunotherapy R&D LLC.
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