[OSList] OS for Dementia?
Spark Stanley Park
spark.osk at gmail.com
Tue Nov 12 15:34:47 PST 2013
What a lovely way of living with dementia!!!^^
Spark ♥
2013. 11. 13. 오전 8:19에 "Suzanne Daigle" <sdaigle4 at gmail.com>님이 작성:
> 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>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 (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
>>
>> :- 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>> 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>> 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>> 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
>>>> /A proud member of the Genuine Contact Leadership Management Team/
>>>> elitepperk at gmail.com <mailto:elitepperk at gmail.com>
>>>> 58 212 986 4254 <tel:212%20986%204254>
>>>> 58 424 256 5855 <tel:424%20256%205855>
>>>>
>>>>
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>>>>
>>>> --
>>>> Charles R. Morrow-Jones
>>>> Morrow-Jones Associates
>>>> morrowjones at gmail.com <mailto:morrowjones at gmail.com>
>>>>
>>>> (614) 571-3533
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>
>
>
> --
> Suzanne Daigle
> Open Space Facilitator
> NuFocus Strategic Group
>
> FL 941-359-8877
> Cell: 203-722-2009
> www.nufocusgroup.com
> s.daigle at nufocusgroup.com
> twitter @suzannedaigle
>
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