<div dir="ltr"><div><div><div>Dear Doug and all,<br><br></div>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. <br>
<br></div>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. <br>
<br></div><div>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.<br>
<br>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. <br>
<br></div><div>It was a learning journey for us, like holding space with and without words. <br><br></div><div>Suzanne <br></div><div><br></div><div><br></div><div><br></div><br><div><div><div><br></div><div><br></div><div>
<br></div></div></div></div><div class="gmail_extra"><br><br><div class="gmail_quote">On Mon, Nov 11, 2013 at 11:03 AM, doug <span dir="ltr"><<a href="mailto:ost@footprintsinthewind.com" target="_blank">ost@footprintsinthewind.com</a>></span> wrote:<br>
<blockquote class="gmail_quote" style="margin:0 0 0 .8ex;border-left:1px #ccc solid;padding-left:1ex">Lisa, Michael, Charles, Elisabeth, Eric, and all--<br>
<br>
Thank you for your wonderful and heart-felt responses.<br>
<br>
This will be a little long, so grab a cup of hot chocolate....<br>
<br>
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.<br>
<br>
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.<br>
<br>
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.<br>
<br>
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.<br>
<br>
<br>
Help me speak from my dementia<br>
Since I have trouble thinking<br>
But I feel, I see, I exist<br>
I want to love you<br>
And be respected<br>
Because I am, still<br>
I remember, I remember<br>
The songs, the dances,<br>
The babies<br>
I don't have the words so much<br>
Any more<br>
But my life<br>
and yours<br>
Is more<br>
<br>
<br>
<br>
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?”<br>
<br>
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%?<br>
<br>
“Are they fine, exactly as they are, in themselves?”<br>
<br>
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.”<br>
<br>
“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?”<br>
<br>
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.<br>
<br>
“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?”<br>
<br>
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.<br>
<br>
I love Lisa's suggestion about activities and presence.<br>
<br>
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: <a href="http://www.newyorker.com/reporting/2013/05/20/130520fa_fact_mead?currentPage=1" target="_blank">http://www.newyorker.com/<u></u>reporting/2013/05/20/130520fa_<u></u>fact_mead?currentPage=1</a> (A long article worth your time.)<br>
<br>
Second is the work of Memory Bridge with just these populations, described here: <a href="http://articles.chicagotribune.com/2010-04-14/news/ct-news-memory-bridge-20100413_1_dementia-patients-students-elderly" target="_blank">http://articles.<u></u>chicagotribune.com/2010-04-14/<u></u>news/ct-news-memory-bridge-<u></u>20100413_1_dementia-patients-<u></u>students-elderly</a><br>
<br>
:- Doug.<div><div class="h5"><br>
<br>
<br>
<br>
On 11/08/2013 04:07 PM, Lisa Heft wrote:<br>
</div></div><blockquote class="gmail_quote" style="margin:0 0 0 .8ex;border-left:1px #ccc solid;padding-left:1ex"><div><div class="h5">
Doug, I love the way you wonder.<br>
Michael, I echo your recommendation to have clarity in what one's role is.<br>
Charles, your insight and experience deepens our understanding.<br>
<br>
As some of you know, I, too, in my caring for my parents, had a mother<br>
with dementia - and spent (as I still do, with my still-independent<br>
father) many hours in a mixed-care-level elders residence and community.<br>
As Charles says - dementia means and is so very many diverse things, and<br>
is so completely diversely differently present in each unique individual<br>
who has (or has not) been diagnosed with it.<br>
<br>
For some, it is (heartbreakingly to some family members, magical in my<br>
own experience of and lens about it), a person being completely and<br>
totally in the now, and now, and now, with zero memory of the moment<br>
before now. For some, it is one day acting like a sweet little old man,<br>
and the next day acting like a scary angry frighteningly mean creature<br>
who looks a lot like your father. For some, there is nothing you could<br>
read by looking, so you may or may not feel they are 'in there'. Some<br>
may recognize their loved ones, some may not, some may shift back and<br>
forth. And there are a million more uniquenesses.<br>
<br>
My real question to you, Doug, is to any facilitator who sees a need,<br>
wishes to serve.<br>
And for this, I go right back to how I look at all facilitation, leaving<br>
the 'how' - the selection of process - for last. I start with the<br>
analysis. Questions.<br>
<br>
Who is this for? Is it your need / vision for them that is driving this,<br>
or are they asking for this? Is it to serve a need that they are<br>
articulating? or that you are assuming?<br>
Are they fine, exactly as they are, in themselves?<br>
Is it their families who might need something? Are their families<br>
yearning for them to be something they cannot be or are not? Do the<br>
families need something for themselves - perhaps a way to articulate a<br>
shared-yet-diverse experience?<br>
<br>
If so, what is the time available for - whomever you will be working<br>
with? What is the environment?<br>
(quiet? private? people walking or wheeling through speaking in loud<br>
voices to themselves or others? distracting sounds? differing medication<br>
schedules? rooms in a facility that are used for food + recreation +<br>
meetings + quiet time, all in the same room, all at the same time? lots<br>
of wheelchairs? clear pathways?)<br>
Is there ability to 'opt out', for those who do not have voices or<br>
ability to move their own wheelchairs or find their own way down the hall?<br>
<br>
These and a million other things would be my questions, before knowing<br>
who has the need and asks for the service / would benefit from it, what<br>
are the physical or time or multi-tasking boundaries, all that, and<br>
more. Before ever selecting an existing or designing a custom dialogic<br>
process.<br>
<br>
One of the things I observe really works well (my observation is visual<br>
and intuitive - I cannot know from inside peoples' own thoughts) - is an<br>
activity that each individual can be present for (if they are able) in<br>
their own unique individual way. My dad plays jazz piano for the health<br>
center patients and the Alzheimer unit where he lives, on a regular<br>
basis. With music, you can see muscles relax, people who would have<br>
seemed catatonic sway, little smiles on some faces that looked otherwise<br>
set. With an art class a wonderful daughter provides on a regular basis,<br>
individuals touch things, or do things, or just look at things, or are<br>
just around others doing creative things - in the same room, but each in<br>
her or his own unique way.<br>
<br>
In this way the piano player or art volunteer are not trying to 'help'<br>
people 'do' anything, or have the group do anything together - but<br>
instead, are providing a nutritious and be-however-you-are environment.<br>
And what I observe is a group of amazingly diverse people, in their own<br>
space and in a shared space, with no task, no 'outcome', simple being.<br>
With love surrounding them.<br>
<br>
Lisa<br>
<br>
<br>
<br>
<br>
<br>
On Nov 8, 2013, at 10:41 AM, Charles Morrow-Jones <<a href="mailto:morrowjones@gmail.com" target="_blank">morrowjones@gmail.com</a><br></div></div>
<mailto:<a href="mailto:morrowjones@gmail.com" target="_blank">morrowjones@gmail.com</a>><u></u>> wrote:<br>
<br>
<blockquote class="gmail_quote" style="margin:0 0 0 .8ex;border-left:1px #ccc solid;padding-left:1ex"><div class="im">
I've been lurking quietly on the list for a while now, but feel<br>
compelled to speak on this topic, since my father suffers from dementia.<br>
<br>
Please tread cautiously - dementia is not a single monolithic<br>
condition, but rather ranges from somewhat mild forgetfulness to<br>
delusional states for some, and near-catatonic states for others. It<br>
encompasses Altzheimers and a variety of other diagnoses.<br>
<br>
I would suggest that OST could be highly useful for dementia<br>
*caregivers* and that those folks, rather than the dementia sufferers,<br>
should be the focus.<br>
<br>
<br>
<br>
On Fri, Nov 8, 2013 at 12:52 PM, Elisabeth Tepper Kofod<br></div><div class="im">
<<a href="mailto:elitepperk@gmail.com" target="_blank">elitepperk@gmail.com</a> <mailto:<a href="mailto:elitepperk@gmail.com" target="_blank">elitepperk@gmail.com</a>>> wrote:<br>
<br>
Dear Doug... what a wonderful title!<br>
I have been revolving around the idea of opening space for<br>
families and our issues.<br>
With love<br>
Elisabeth<br>
<br>
<br>
On Fri, Nov 8, 2013 at 11:39 AM, doug <<a href="mailto:ost@footprintsinthewind.com" target="_blank">ost@footprintsinthewind.com</a><br></div><div class="im">
<mailto:<a href="mailto:ost@footprintsinthewind.com" target="_blank">ost@<u></u>footprintsinthewind.com</a>>> wrote:<br>
<br>
Friends--<br>
<br>
Have been thinking that a population OST could serve in a<br>
major good way is among people who have dementia. How?<br>
<br>
Perhaps we have a mixed group of people with dementia living<br>
in a congregate housing setting and teenagers. We gather them<br>
in a circle and do the normal things. The teenagers could help<br>
the oldsters remember the instructions and post topics. The<br>
title could be “Issues and Opportunities with Growing Younger<br>
Every Day.”<br>
<br>
How, if at all, would you change the normal format of OST for<br>
this group? What other mixture of people would you invite?<br>
What other titles?<br>
<br>
Perhaps we could get family members to gather with them around<br>
the topic “Issues and Opportunities to Still Be Family” or<br>
“Meet Me Here Today.”<br>
<br>
I wonder.... I invite you to wonder with me....<br></div>
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*Facilitadora de Procesos de Transformación*<div class="im"><br>
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</div></div></blockquote></div><br><br clear="all"><br>-- <br><div dir="ltr">Suzanne Daigle<br>Open Space Facilitator<br>NuFocus Strategic Group<br><br>FL 941-359-8877 <br>Cell: 203-722-2009<br><a href="http://www.nufocusgroup.com" target="_blank">www.nufocusgroup.com</a><br>
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