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 experiencesand 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.