What a lovely way of living with dementia!!!^^ Spark ♥ 2013. 11. 13. 오전 8:19에 "Suzanne Daigle" <sdaig...@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 <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 (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 <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>> 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>> 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.... >>>> _________________________________________________ >>>> >>>> OSList mailing list >>>> To post send emails to OSList@lists.openspacetech.org >>>> <mailto:OSList@lists.openspacetech.org> >>>> >>>> To unsubscribe send an email to >>>> OSList-leave@lists.__openspacetech.org >>>> <mailto:oslist-le...@lists.openspacetech.org> >>>> >>>> To subscribe or manage your subscription click below: >>>> http://lists.openspacetech.__org/listinfo.cgi/oslist-__ >>>> openspacetech.org >>>> <http://lists.openspacetech.org/listinfo.cgi/oslist- >>>> openspacetech.org> >>>> >>>> >>>> >>>> >>>> -- >>>> *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/ >>>> elitepp...@gmail.com <mailto:elitepp...@gmail.com> >>>> 58 212 986 4254 <tel:212%20986%204254> >>>> 58 424 256 5855 <tel:424%20256%205855> >>>> >>>> >>>> _______________________________________________ >>>> OSList mailing list >>>> To post send emails to OSList@lists.openspacetech.org >>>> <mailto:OSList@lists.openspacetech.org> >>>> >>>> To unsubscribe send an email to >>>> oslist-le...@lists.openspacetech.org >>>> <mailto:oslist-le...@lists.openspacetech.org> >>>> >>>> To subscribe or manage your subscription click below: >>>> http://lists.openspacetech.org/listinfo.cgi/oslist- >>>> openspacetech.org >>>> >>>> >>>> >>>> >>>> -- >>>> Charles R. Morrow-Jones >>>> Morrow-Jones Associates >>>> morrowjo...@gmail.com <mailto:morrowjo...@gmail.com> >>>> >>>> (614) 571-3533 >>>> _______________________________________________ >>>> OSList mailing list >>>> To post send emails to OSList@lists.openspacetech.org >>>> <mailto:OSList@lists.openspacetech.org> >>>> >>>> To unsubscribe send an email to oslist-le...@lists.openspacetech.org >>>> <mailto:oslist-le...@lists.openspacetech.org> >>>> >>>> To subscribe or manage your subscription click below: >>>> http://lists.openspacetech.org/listinfo.cgi/oslist-openspacetech.org >>>> >>> >>> >>> >>> _______________________________________________ >>> OSList mailing list >>> To post send emails to OSList@lists.openspacetech.org >>> To unsubscribe send an email to oslist-le...@lists.openspacetech.org >>> To subscribe or manage your subscription click below: >>> http://lists.openspacetech.org/listinfo.cgi/oslist-openspacetech.org >>> >>> _______________________________________________ >> OSList mailing list >> To post send emails to OSList@lists.openspacetech.org >> To unsubscribe send an email to oslist-le...@lists.openspacetech.org >> To subscribe or manage your subscription click below: >> http://lists.openspacetech.org/listinfo.cgi/oslist-openspacetech.org >> > > > > -- > Suzanne Daigle > Open Space Facilitator > NuFocus Strategic Group > > FL 941-359-8877 > Cell: 203-722-2009 > www.nufocusgroup.com > s.dai...@nufocusgroup.com > twitter @suzannedaigle > > _______________________________________________ > OSList mailing list > To post send emails to OSList@lists.openspacetech.org > To unsubscribe send an email to oslist-le...@lists.openspacetech.org > To subscribe or manage your subscription click below: > http://lists.openspacetech.org/listinfo.cgi/oslist-openspacetech.org > >
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