Dear Doug and all,
I will briefly offer a personal perspective. My mom had mild dementia.
She died on January 1st of this year, peacefully, surrounded by her
children, very aware of our presence and she seemed at peace and content.
Where my heart ached the most for her, especially in those early years
of her dementia, is when she was asked to answer questions or invited to
engage in conversations with people that she did not know too well. She
knew there was something wrong; she realized that she could not remember
things and she suffered because of it, sometimes for days after. She
was embarrassed and concerned that people would think she was stupid.
Rarely did she share those exact thoughts with us, but sometimes it
slipped out and it broke our heart.
In later years, we learned to just flow with the conversation -- if it
got stuck, we would gently change the subject. Hugs, smiles and
appreciative words of all that she was for us always seemed to have a
positive effect. She loved music and she enjoyed just watching
people.Other times, her mind would wander and we could not guess what
she was thinking.
As I read what has been shared, I just felt a need to also express
caution because the most difficult period for mom was in those early
years, when she had mild dementia. Later she totally lived in the moment
not seeming to care what people thought. She laughed freely and seemed
so much happier.
It was a learning journey for us, like holding space with and without
words.
Suzanne
On Mon, Nov 11, 2013 at 11:03 AM, doug <o...@footprintsinthewind.com
<mailto:o...@footprintsinthewind.com>> wrote:
Lisa, Michael, Charles, Elisabeth, Eric, and all--
Thank you for your wonderful and heart-felt responses.
This will be a little long, so grab a cup of hot chocolate....
I do not want to be the sponsor. I can find someone who will do that
and well. I want to facilitate. Why do I want to do this? Because I
think conversation is a way to release the invitation, imagination,
and spirit of the community.
It is necessary to bring in people who have dementia. Knowing that
OST is a largely verbal type gathering (but does not have to be) I
initially think it wise to start with those with early and mild
stages of impairment, at least till we learn from them.
Caregivers only? They have a special set of issues and opportunities
and it would be valuable to open space with them. But I want them to
learn from the source. The people who have dementia, who have
trouble thinking, have something special to bring, to teach us. We
maybe see they have a need, but we have needs as well, and they help
us meet them.
Yes, gather the sponsor and the people who mirror the potential
group and see what we want to do, then decide the format. It might
not be OS. That's good.
Help me speak from my dementia
Since I have trouble thinking
But I feel, I see, I exist
I want to love you
And be respected
Because I am, still
I remember, I remember
The songs, the dances,
The babies
I don't have the words so much
Any more
But my life
and yours
Is more
Lisa asks: “Who is this for? Is it your need / vision for them that
is driving this, or are they asking for this? Is it to serve a need
that they are articulating? or that you are assuming?”
ddg: Who, never having seen Open Space Technology, asks for it? But
I think those who have trouble thinking, like everyone, are starving
for touch, conversation with or without words, music, engagement.
How many never have visitors? 75%?
“Are they fine, exactly as they are, in themselves?”
ddg: some undoubtedly are, more appear lonely, unvisited, in need of
touch. A priest says one elderly parishioner just loves the “passing
of the peace” in church because she says “It is the only touch I get
all week.”
“Is it their families who might need something? Are their families
yearning for them to be something they cannot be or are not? Do the
families need something for themselves - perhaps a way to articulate
a shared-yet-diverse experience?”
ddg: Undoubtedly they have needs which could be served by a separate
experience (of OST, possibly), but families are going through this
together and family does not need separation in such times.
“If so, what is the time available for - whomever you will be
working with? What is the environment? (quiet? private? people
walking or wheeling through speaking in loud voices to themselves or
others? distracting sounds? differing medication schedules? rooms in
a facility that are used for food + recreation + meetings + quiet
time, all in the same room, all at the same time? lots of
wheelchairs? clear pathways?) Is there ability to 'opt out', for
those who do not have voices or ability to move their own
wheelchairs or find their own way down the hall?”
ddg: These logistics are challenges to be considered in the design.
They are really deeper questions than most would ask about
logistics, things the inviters need to work on. I don't have the
answers. But together we do.
I love Lisa's suggestion about activities and presence.
May I point you to a couple of articles which give some more depth
to my wonderings? First this quote from Tena Alonzo: “One of the
things that create comfort for people who have trouble thinking is
space....” Found here at page two:
http://www.newyorker.com/__reporting/2013/05/20/130520fa___fact_mead?currentPage=1
<http://www.newyorker.com/reporting/2013/05/20/130520fa_fact_mead?currentPage=1>
(A long article worth your time.)
Second is the work of Memory Bridge with just these populations,
described here:
http://articles.__chicagotribune.com/2010-04-14/__news/ct-news-memory-bridge-__20100413_1_dementia-patients-__students-elderly
<http://articles.chicagotribune.com/2010-04-14/news/ct-news-memory-bridge-20100413_1_dementia-patients-students-elderly>
:- Doug.
On 11/08/2013 04:07 PM, Lisa Heft wrote:
Doug, I love the way you wonder.
Michael, I echo your recommendation to have clarity in what
one's role is.
Charles, your insight and experience deepens our understanding.
As some of you know, I, too, in my caring for my parents, had a
mother
with dementia - and spent (as I still do, with my still-independent
father) many hours in a mixed-care-level elders residence and
community.
As Charles says - dementia means and is so very many diverse
things, and
is so completely diversely differently present in each unique
individual
who has (or has not) been diagnosed with it.
For some, it is (heartbreakingly to some family members, magical
in my
own experience of and lens about it), a person being completely and
totally in the now, and now, and now, with zero memory of the moment
before now. For some, it is one day acting like a sweet little
old man,
and the next day acting like a scary angry frighteningly mean
creature
who looks a lot like your father. For some, there is nothing you
could
read by looking, so you may or may not feel they are 'in there'.
Some
may recognize their loved ones, some may not, some may shift
back and
forth. And there are a million more uniquenesses.
My real question to you, Doug, is to any facilitator who sees a
need,
wishes to serve.
And for this, I go right back to how I look at all facilitation,
leaving
the 'how' - the selection of process - for last. I start with the
analysis. Questions.
Who is this for? Is it your need / vision for them that is
driving this,
or are they asking for this? Is it to serve a need that they are
articulating? or that you are assuming?
Are they fine, exactly as they are, in themselves?
Is it their families who might need something? Are their families
yearning for them to be something they cannot be or are not? Do the
families need something for themselves - perhaps a way to
articulate a
shared-yet-diverse experience?
If so, what is the time available for - whomever you will be working
with? What is the environment?
(quiet? private? people walking or wheeling through speaking in loud
voices to themselves or others? distracting sounds? differing
medication
schedules? rooms in a facility that are used for food + recreation +
meetings + quiet time, all in the same room, all at the same
time? lots
of wheelchairs? clear pathways?)
Is there ability to 'opt out', for those who do not have voices or
ability to move their own wheelchairs or find their own way down
the hall?
These and a million other things would be my questions, before
knowing
who has the need and asks for the service / would benefit from
it, what
are the physical or time or multi-tasking boundaries, all that, and
more. Before ever selecting an existing or designing a custom
dialogic
process.
One of the things I observe really works well (my observation is
visual
and intuitive - I cannot know from inside peoples' own thoughts)
- is an
activity that each individual can be present for (if they are
able) in
their own unique individual way. My dad plays jazz piano for the
health
center patients and the Alzheimer unit where he lives, on a regular
basis. With music, you can see muscles relax, people who would have
seemed catatonic sway, little smiles on some faces that looked
otherwise
set. With an art class a wonderful daughter provides on a
regular basis,
individuals touch things, or do things, or just look at things,
or are
just around others doing creative things - in the same room, but
each in
her or his own unique way.
In this way the piano player or art volunteer are not trying to
'help'
people 'do' anything, or have the group do anything together - but
instead, are providing a nutritious and be-however-you-are
environment.
And what I observe is a group of amazingly diverse people, in
their own
space and in a shared space, with no task, no 'outcome', simple
being.
With love surrounding them.
Lisa
On Nov 8, 2013, at 10:41 AM, Charles Morrow-Jones
<morrowjo...@gmail.com <mailto:morrowjo...@gmail.com>
<mailto:morrowjo...@gmail.com <mailto:morrowjo...@gmail.com>>__>
wrote:
I've been lurking quietly on the list for a while now, but feel
compelled to speak on this topic, since my father suffers
from dementia.
Please tread cautiously - dementia is not a single monolithic
condition, but rather ranges from somewhat mild forgetfulness to
delusional states for some, and near-catatonic states for
others. It
encompasses Altzheimers and a variety of other diagnoses.
I would suggest that OST could be highly useful for dementia
*caregivers* and that those folks, rather than the dementia
sufferers,
should be the focus.
On Fri, Nov 8, 2013 at 12:52 PM, Elisabeth Tepper Kofod
<elitepp...@gmail.com <mailto:elitepp...@gmail.com>
<mailto:elitepp...@gmail.com <mailto:elitepp...@gmail.com>>>
wrote:
Dear Doug... what a wonderful title!
I have been revolving around the idea of opening space for
families and our issues.
With love
Elisabeth
On Fri, Nov 8, 2013 at 11:39 AM, doug
<o...@footprintsinthewind.com
<mailto:o...@footprintsinthewind.com>
<mailto:ost@__footprintsinthewind.com
<mailto:o...@footprintsinthewind.com>>> wrote:
Friends--
Have been thinking that a population OST could
serve in a
major good way is among people who have dementia. How?
Perhaps we have a mixed group of people with
dementia living
in a congregate housing setting and teenagers. We
gather them
in a circle and do the normal things. The teenagers
could help
the oldsters remember the instructions and post
topics. The
title could be “Issues and Opportunities with
Growing Younger
Every Day.”
How, if at all, would you change the normal format
of OST for
this group? What other mixture of people would you
invite?
What other titles?
Perhaps we could get family members to gather with
them around
the topic “Issues and Opportunities to Still Be
Family” or
“Meet Me Here Today.”
I wonder.... I invite you to wonder with me....
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