There are many surprises after a diagnosis of dementia, and I was chatting about some of them Monday night with friends from the UK. One of the most common is the ‘friends’ who disappear after they find our we have dementia.
A few weeks ago I was interviewed on the telephone by one of the producers of the SBS television program Insight in preparation for the filming of it last week, and the final question I was asked is this: What has surprised me the most since being diagnosed with dementia?
Sadly, it did not take me long to answer this question, and I answered saying:
The one thing that has surprised me the most is man’s inhumanity to man …
Why have we been systematically locked away and/or ignored as if we are not human beings once we are diagnosed with dementia?
I have often said I have often felt like I am being treated as “no longer human”… and this still surprises me. When vile journalists such as the despicable pathetic excuse of a human being K Hopkins from the UK, makes statements such as this; “What is the point of life when you know longer know you are living?”, and others like that, or alternatively, claim we cannot possibly have dementia if we can still function at all, it simply exacerbates the very great challenges of improving perceptions, and more importantly, the care of people with dementia.
The SBS program was filmed in their studio last Thursday night, and their goal for this program is to show a more balanced view of dementia, that is, that there are many of us living better with it than most people expect, and it is possible to live meaningful and productive lives at least until the end stages of dementia.
Many of us are simply refusing to be treated like non humans, and more importantly, absolutely refusing to give up living.
And surprisingly, playing Bingo is not on our suite of meaningfully engaging or purposeful activities!!!
Some of us have become poets, some artists. Some writers and authors. A few of us are even studying at university or doing other courses, and NO, these courses have NOT been DUMBED DOWN for us. Some are advocating and speaking out, at events and forums where people without dementia are actually, almost unbelievably, starting to listen. One day, we might even see dementia care change for the better as well.
We are refusing to be patronised, excluded, or used in tokenistic ways that simply allow organisations to tick a box in their paper work to state they have included us.
One person with dementia on any committee or program, or organisation, is quite simply, not enough.
But, zero is intolerable.
Personally, I have been discriminated against by organisations after being nominated for their Board, and openly denied a place ONLY because of my disabilities. This is blatant discrimination.
Mr Graeme Samuel, the current President of Alzheimer’s Australia stated very clearly at the SBS filming of Insight, of which he and his brother were two of the people being interviewed as family carers of their mother, that it was impossible to tell by looking at or listening to those of us out the front with dementia sitting with our family carers, who actually had the diagnosis of dementia.
Graeme also stated people with dementia still have a lot to contribute to society, and should be not only allowed to, but encouraged to do so. Hopefully others will take this seriously.
Another point made by Graeme and his brother, which also resonated loudly with my husband and I, is the guilt we feel for having placed a parent into residential aged and dementia care. We all know, logically and realistically, there seemed no other option, but that will never remove the feelings of guilt for having let them down. Rational logic does not always remove our feelings of guilt. I learnt that after the death of someone I loved by suicide!
There are, quite literally, hundreds of inequities people with dementia are facing, each and every day, and until my last legible word or breath, I will keep speaking out for them, and up for our most basic of human rights… to be treated as a human being, and with full and equal inclusion in every single conversation abut us.