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What a Gathering! A PWID Perspective.
It seems fitting to borrow from the Christmas slogan.
'We are the Reason for the Season.'
Without
us who have dementia there would be no Alzheimer's Association
and no World Conference. The officials and organisers would be
quite rested and blissfully unaware of their potential to change
lives and attitudes. For that was what this conference was all
about and to everyone's credit this potential is starting to be
realised as well as being increased by the moment.
Yet
this was a world first. People with dementia (PWiDs) were not
only invited to attend but were also given leading roles in addresses
and seminars. PWiDs were active and respected participants in
all facets of the occasion. We had twelve PWids in our discussion
group which makes us 0.5% or less of the entire conference of
over one thousand people. Yes, we felt special and we will work
to promote the early diagnosis of dementia as we are able so that
the percentage of PWiDs to carers and medical and social professionals
will increase in the future.
DASN
International, a "Worldwide non-profit organisation by and
for those diagnosed with dementia working together to improve
our quality of life" had a booth set up in the main gathering
area. Husbands and care partners of members manned it while they
were in discussion groups. An hour long video presentation was
shown and countless printed articles distributed sharing the realities
of living with dementia and emphasising the great pool of talent
and potential we PWiDs have to change our personal, social, medical
and political futures. Great interest was shown in this booth.
In
our discussion group, which was PWiDs ONLY, facilitated by Jan
Phillips from USA and Christine Boden from Australia, we covered
subjects as diverse as the dismal reality that Pharmac does not
accept that life changing drugs e.g. Aricept and Exolon are worth
subsidising for our greater involvement in society, (or is it
that they have the mindset that we have little worth in their
scheme of things?), to a great demonstration of a numbers game
'Numero" which was created by an Australian PWiD as a game
for his grandchildren. He later found it a wonderful way to stimulate
our slowing abilities in calculations. It is fun to play and a
great way to spend time with more advanced dementia patients in
care. This game is available world wide and the proceeds return
to the Western Australian Alzheimer's Association. 'Numero' will
soon be available through branches of Whitcouls in N.Z. and I
strongly recommend it for all ages, not only PWiDs.
We
cried with each other as we told our stories and shared the fears
of a progressive illness that would finally take our minds away
and laughed at the burnt toast, the half cooked dinners, the forgotten
appointments and all the many wonderful situations only we with
dementia get ourselves into. There was never an atmosphere of
inevitability to regress. Rather the love and support we received
from each other created a passion that empowered mind and spirit.
As a result I have been empowered to speak and write of my experiences
and given a vision of hope and involvement which I intend to offer
to our local Alzheimer's Association and to DASN International.
While
I was cosseted with my fellows and 'fellowesses' Jean had time
to inspect the booths of the international associations present,
and to spend time with the drug companies exhibits. She received
cheerful support wherever she went and would especially like to
single out Dr Verna Scholfield and Mary Rose for being just that
much extra. I say thanks to them also.
One
jarring note sounded above the music of the occasion. Why do some
carers and administrators continue to refer to us PWiDs as clients
or 'bodies in care'? The terms were even used on a provincial
poster! Being called thus, I find, is both disgraceful and demeaning.
We are people with all the humanities that others have. We may
be a little slow and forgetful but we are not stupid or depersonalised.
I ask the offenders to please accord us more respect.
For
me, with early stage dementia, this gathering was a most rewarding
and encouraging experience. We shared laughter and tears, deep
dissertations on living and dying. Through it all we gained strength
from being together. It humbled me greatly to experience the depths
of faith and humanity and the heights of love and support offered
by my fellow journeymen.
I
forgot to tell about Jan's bubbles. She gave each of us a little
bottle of gin...oops, bubbles to hang round our necks. When we
felt particularly stressed we would open the bottle and blow bubbles
over everyone. It made for much hilarity and the rank and file
became even more convinced that we had lost the plot somewhere
along the line. Funny thing was that they all wished that they
had one too. You can add that to your journal too if you like.
It is a real PWiD's joke.
I came to this conference in fear and left in wonder.
Thank you and God bless.
Brian McNaughton
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