No more sticks in my eye!

Another great blog recently by Sonya Barsness called Being Better than a Stick in the Eye. In the beginning (i.e. after my diagnosis) my husband and I too were ‘starving’, for any old stick in the eye! And in the beginning we also meekly accepted any old stick in the eye. There was so little support 10 years ago, it still truly shocks me to hear new members of DAI report they too are told to get their affairsin order and prepare for the end, and too many are given little other support than the Prescribed Disengagement® I was given

As anyone who follows my blog knows, I no longer accept that, and my #BanBPSD series during World Alzheimer’s Month this year brought a lot of professionals out from the shadows wanting to do better. Early in 2019, you will hear a lot more from us all, including my article on getting rid of the term ‘Unmet needs’, which is barely a palatable replacement for BPSD, as it still implies all the fault or issues are with the person with dementia.

I’m sure Sonya is right in saying that we accept anything in the beginning because ‘we are starving’, and anything seems better than ‘a stick in the eye’.

In her blog, Sonya says: The perils of being starved and accepting anything are especially concerning in education about dementia. People are starving for knowledge, so the danger can be that any education is good education. People with dementia and their care partners accept this knowledge, and apply it. 

Even if it is education that refers to people living with dementia as “demented”, or labels them as aggressive, non-compliant, sun-downing, wandering, etc.

I’m also sure the construct of BPSD was taken up by professionals and academics as they too were starving for education.So quite literally, as HCP’s were also starving, anything would do, and although this construct was never evidence based, they worked for decades in an attempt to make it so. Unfortunately, BPSD has turned out to be a very large and very cruel ‘stick in our eyes’ and has ensured even worse care, and more breaches of our most basic of human rights.

It’s time we completely rethink dementia.

There is no point oiling a squeaky wheel, when it’s the wrong wheel.

6 thoughts on “No more sticks in my eye!

  1. These observation echo my attempts to advocate for my mother who was in a Dementia unit for 10 years. While the lack of understanding in health care professionals created suffering for my mother I feel that I was left also feeling traumatized! She died last December but I still have flashbacks to how I was treated when I advocated for her. Having been through the pain and suffering with my mother, I am very committed to shift those experiences into my life and practise as a Social Worker. Someone once told me, “You can’t do anything with suffering except turn it into Art!”

    Liked by 1 person

    • I’ve been on three sides of this coin, and they all poked sticks in my eyes! Hopefully together we will eventually create tangible change for people with dementia and their families and advocates. Take care 🌷🌷🌷

      Liked by 1 person

  2. Hi Kate thanks for your thoughts and link to Sonya’s blog. After reading the complete blog I could stop thinking about how I was encouraged to take the advice of doctors as gospel when mum was first diagnosed. Some advice definitely not focus on mums strengths. But the opposite, highlighting what mum now found challenging. In hindsight I realise now that these ‘professionals’ didn’t see mum as a person who was seeing and
    experiencing the world differently, and doing her best to keep swimming in this changing world she was thrown into. For me the final straw came when it was suggested that the only course of action to manage mums ‘problems’ was to sedate her. The manure truly hit the mistral when I wouldn’t agree to this sedation for mum and persisted to find alternative options. Thinking back to this time doctors probably wish they had sedated me instead ha.
    Love Uncle Ben quote “With great power, comes great responsibility.” Which is why after this experience with mums diagnosis I changed career from supporting young people via mentoring to now working in Aged Care supporting people living with dementia.
    I took a lot from this info a positive opportunity to reflect on what could and should have been done better, the past can’t be changed but we can shape the future a big responsibility.

    Liked by 1 person

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