The last few days have been racked with a sadness after the loss of a friend with younger onset dementia; for many of us there has been a revisiting of our own mortality, and the issues many people with dementia and our loved ones discuss, especially in the early days following a diagnosis. The fear engendered by the hideous and negative media campaigns, the language of war being used to describe dementia, and the negative dehumanising and demeaning language to describe our experience… no wonder many think it is preferable to commit suicide. ‘Society’ is still determining it is not possible to live well with dementia.
The question so many of us have asked is this: should we take our own lives, to stop the ‘suffering’ that society tells us (repeatedly, and oh so very repetitively) we will experience?
As well, we have Alzheimer’s Associations and Societies who fundraise primarily to support the operation of the organisation, and for a cure, and who’s services for consumers is primarily for family carers, not people with dementia. And just lately, more of these organisations are cutting down on services to consumers, but still wanting us (people with dementia) to support their fundraising efforts.
On top of that, the absurd and absolute focus on research for a cure, and of a ‘world without dementia’, and so little mention of how to improve the experience of living with dementia, no talk, other than a catch line here and there about living well with dementia, but no support on how to do that. For goodness sake, how much money have we ploughed into cancer research, and for how long, and do we have a world without cancer yet?!
The blog I wrote recently No longer fearful of dementia talks about overcoming the fear of dementia, the fear of the symptoms of dementia, but,
our fear is fuelled by the focus on a cure, the lack of good care, and the focus by the media, associations, and the community on the ‘suffering’.
It is very challenging to overcome the fear of dementia, made almost impossible because of the negative dehumanising narrative of dementia.
The power of language is more important than some would dare to believe, and it is not just simple semantics, but can in fact mean the difference between living with fear or living better with dementia, or being willing to accept the changes of dementia or take one’s own life to avoid the advancing symptoms of dementia. Language is very powerful, perhaps even more than those without dementia can even be bothered to imagine.
Finally, I am also starting to believe the many books and articles being written about people with dementia, even the so-called ‘tributes’ and ‘memoirs’, are doing far more harm than good, perhaps not to other family carers, but to people with dementia.
To have our ‘suffering’ so exposed publicly, in terms and with language determined by people without dementia, undermines who we are, and our experience.
Let the carers write about their own experience (or their mothers, fathers, or the family or friend they have supported), not our experiences. Their accounts of our experience of dementia and the ‘burden’ we are to them and to others, also encourages us to want to bail out, as none of us with dementia want to, nor intentionally cause this suffering of those we love.
I was admonished for writing this blog, and even asked to take it down, but still believe I had a right to voice my own concerns. Authors, whoever they are, and regardless of their opinions about their own work or their own right to write about someone with dementia, need to be reminded not everyone will admire or even like their work. I learnt that through blogging many years ago, and always remind myself that in a landslide election win, it is often less than 50% who vote for you. Writing with an audience is no different.
If I had a son with severe mental illness or cerebral palsy, I am pretty sure society, and my son would not be so thrilled if I wrote publicly about hard it might be for him to live with cerebral palsy, about his ‘suffering’. It would be ok to write about the challenges I faced as his mother, but only ok for him to write about his own challenges… surely?
Perhaps I’m just an idiot, or it’s the dementia, but I do think I’m onto something here…
We all know we are going to die, we all know we have been diagnosed with dementia which is a terminal illness, but that is not a reason to encourage us to give up and die now, either literally, or by giving up.
This has been a particular tough blog to write, in particular writing about dementia and suicide, as this is a very sensitive topic to many of us living with dementia right now, due to our mutual and recent grief, but it these are the types of conversations I believe we need to have.
We do indeed, live until we die!
If only we were supported to.