[OSList] OS for Dementia?
doug
ost at footprintsinthewind.com
Tue Nov 12 16:45:52 PST 2013
Suzanne--
Wonderful picture and wonderful note you have played for us. Much to mull.
:- Doug.
On 11/12/2013 06:19 PM, Suzanne Daigle wrote:
> 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 <ost at footprintsinthewind.com
> <mailto:ost at 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
> <morrowjones at gmail.com <mailto:morrowjones at gmail.com>
> <mailto:morrowjones at gmail.com <mailto:morrowjones at 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
> <elitepperk at gmail.com <mailto:elitepperk at gmail.com>
> <mailto:elitepperk at gmail.com <mailto:elitepperk at 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
> <ost at footprintsinthewind.com
> <mailto:ost at footprintsinthewind.com>
> <mailto:ost at __footprintsinthewind.com
> <mailto:ost at 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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> --
> *E**lisabeth **T**epper **K**ofod*
> *Facilitadora de Procesos de Transformación*
>
> Genuine Contact Professional & Co-owner
> Master Practitioner. Coach & Trainer PNL
> Terapia Sistémica - Constelaciones Familiares
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> --
> Charles R. Morrow-Jones
> Morrow-Jones Associates
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> --
> Suzanne Daigle
> Open Space Facilitator
> NuFocus Strategic Group
>
> FL 941-359-8877
> Cell: 203-722-2009
> www.nufocusgroup.com <http://www.nufocusgroup.com>
> s.daigle at nufocusgroup.com <mailto:s.daigle at nufocusgroup.com>
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