Too often I watch an interview of a care partner about life supporting someone with dementia, and they speak with incredible love, but often in paternalistic and patronising ways. In this way they subconsciously continue the myth that people with dementia are the ‘real sufferers’.
What they are really expressing, in my mind, is their own suffering, as they watch us change, and ultimately, watch us die. My BUB agrees with me, which is not always the case! We’ve both been a care partner to others we loved, and sat with family and close friends as they took their last breath. I still suffer when I think about it. So does he.
A dear online friend, Michael Horvich always referred to his partner Gregory, who had Alzheimer’s Disease, as his HERO. My husband and BUB is my hero. My two incredible sons are my super heroes. There is no doubt we all suffer some of the time, but we are not all sufferers as if that is the sum total of our experience. Imagine if people with dementia started being interviewed or filmed and only talked about what a burden it is watching our care partners’ suffering… and highlighted all of the challenging behaviours they have. Now that would make for one hell of a PhD, “The BPSD guidelines for care partners and staff.”
Those who watching and support people with dementia are the real sufferers, not us, and we need them to stop deflecting their suffering onto us, as if it is our experience, and find their own new narrative, not just use, convert, reframe or rework ours. They need to find and teach a new more respectful and human rights based narrative or discourse as ‘care partners’ when they speak about us, where we are spoken about with love and also the sadness and very real loss they must feel, but without the paternalism, and the implication of being ‘not all there’ or even worse, of us being a ‘burden’.
Many journalists, advocacy organisations and events organisers still want the ‘sad sack’ stories, as tragedy and suffering sells, and it raises money, but it is doing us harm and sooner rather than later, it must change.
I’m not in any way trying to sanitise the very real devastation of being told we have dementia, or someone we love has it, but the reality is, suffering and tragedy are not the full story. Even a couple of weeks ago, the Chair of one of the Alzheimer’s Australia organisations referred topple with dementia as sufferers in a public speech he made. If the people inside these organisations, who actually have produced documents on respectful dementia language are not bothering to use them, what hope do we have of change…
Not changing to a balanced public discourse about dementia simply keeps the many myths and misperceptions alive, and increases stigma and discrimination, ensures the pathway of Prescribed Disengagement is followed. It also increases the likelihood of victimhood and martyrdom, as well as the learned helplessness so many with dementia sub consciously assume.
This is often due to care partners taking too much control, talking over or correcting them all the time, even though they are simply doing what the sector currently still prescribes, and doing it from a place of love. But who wouldn’t give up speaking or doing, if they were always corrected, always ‘done for’, or made to feel ashamed or embarrassed for having dementia (acquired disabilities), rather than actively supported to continue to live as independently as possible with them.
I’ve written and spoken about the public discourse and narrative of dementia many times since being diagnosed in 2008, and for this, I’ve been yelled at, bullied on Facebook, occasionally had to block people on social media, and ultimately, publicly defamed by a small group of liars causing me of not having dementia, and a gutter reporter who at no time considered the ethics of how he treated a person living with cognitive disabilities. A friend and fellow colleague Brian Le Blanc writes about his experience of it brilliantly of being accused of faking his Alzheimer’s Disease here on his blog a bit of brian brilliance.
But back to my topic, it really is time care partners found their own new narrative… and people paying them to teach our new narrative, instead engaged us, and paid us to teach the new narrative of dementia we have worked so hard for.
Another great online friend The Amazing Susan just said in a comment on yesterday’s blog:
That also used to happen to me in another life. I too got sick of giving away my expertise. So, when people started to ask me questions, I simply said politely, but firmly:
You can use my exact words if you like. No charge 🙂
Thanks Susan. I’m going to at least send you a big virtual hug for allowing me to use your words which I have inserted into the image above to highlight it! 😉
Ps I must be recovering from the betrayal and defamation, as lit seems I am becoming a bit fired up again here… not sure if I need to apologise in advance, or if most will be ‘glad I’m almost back’?!