Looking back, to move forward

This blog started 9 years ago, and so I decided to review and add here, one post per year from August, to see what, if anything has changed, and also how my writing and thinking has evolved.

My aim is to provide an authentic voice, to be a true advocate, and not to be persuaded to say what others want.

It is not always comfortable… and I have been actively excluded at times, for having a different opinion. To ‘change my mind’, just to have a seat at the table, is not advocacy or real campaigning.

Sadly, in terms of my dementia and aged care campaigning, almost nothing has changed in those areas. In fact the Royal Commission in Austrlia, and then COVID-19 have highlighted just how much nothing has changed, and how wrong both the system and current ‘care’ really is.

August 27, 2011: What to say?: Not really a blog.

August 27, 2012: The Three Stooges and Dementia A short blog, but 8 years later, I still think it has a very important message.

August 27, 2013: Tuesday Humour. Finding humour, as well as learning to Live Beyond Dementia and stay away from Prescribed Disengagement®.

August 26, 2014: The impact of YOD on Children This is another important topic, and a sign that my daily blog, was becoming less than daily.

August 27, 2015: Worrying about people with dementia. My BUB’s quote in this blog is essential for care partners and care providers to remember.

Worrying is part of the territory… But don’t take your worry away,  by taking their life away.  

August 13, 2016: Love Life Loss – A Roller Coaster of Poetry Volume 2: Days with Dementia. This was a very lazy month, as I only had four blogs to choose from to add here! My 2nd poetry book is still availlable here.

August 12, 2017: We all have bills to pay… The persistent and pervasive stigma and discrimination is still denying us fair ‘payment’ for services.

August 13, 2018: Rethinking Dementia Care: #BanBPSD. This campaign is about to be kickstarted again, and I really hope those who are trying to squash it or deflect it, will instead start to have inclusive debates about it.

Not with each other, but with the increasingly large group of dementia consultants, health care professionals, academics and consumers who believe we must ban BPSD. For example, last year, I was the only ‘consumer’ to attend a Special Interest Group event on the topic in Sydney, and was only there as I was lucky enough to be in a financial position to fund myself to get there.

August 17, 2019: Grief. Only two blogs published in August 2019, and this one is more relevant to me today than the other one…

August 3, 2020: Empire says it all… As highlighted in this blog, Sarah Holland-Batt @the_shb said on Twitter,

I am wracking my brain to think of any other sector where a business could fail ALL the safety standards across the board and remain operational.

  • Not mining.
  • Not construction.
  • Not childcare
  • Not schools.

So why is it acceptable in aged care?

The last blog here, is a timely reminder that aged and dementia care is so well below best practice, many of the failings should be treated as a crime, and a great many of the institutional facilities should be shut down.

They would be, if they were any other industry. I even spoke with my physiotherapist last week about this, after he has asked me how were things in the #dementiaactivism world! We agreed that if he refused to meet the standards, his clinical prcatice would be shut down, and talked about why for so long, it is ok not to meet the standards in aged and dementia care.

Is it due to issues such as ageism, a 20th century view of dementia, and the stigma and discrimination older persons and especially people with dementia experience? I think the topic is ripe for a wanna-be PhD student. I will however, choose to remain hopeful and

Optimistic...

Footnote: Hopefully, reviewing just a few of the last 8 years of blogs will help me find new ways to move forward, for the much needed change.

8 thoughts on “Looking back, to move forward

  1. Pingback: Horrified, but not surprised |

  2. I love the story about your boys using the rules to sort you and Peter out.

    Hang in there – sometimes change is slow and barely noticeable. As I always used to say to my interns – watch carefully and notice even small change – everything is significant!!!

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  3. A prominent ER doctor addressed an online group I was in developing guidelines for people with dementia admitted to hospital during the COVID19 pandemic several months ago. I asked him about people with dementia in a COVID19 crisis, and he readily stated that if someone came to his ER with a dementia diagnosis he would not treat and allow them to die. His words were bad enough, but his tone and body language was such as we are irrelevant and lower class and of no further use.

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  4. Interesting to see your work over time. When I saw the “second book of poetry” I almost bought it. Then I checked and remembered that it has an honored place already on my bookshelf! Sending love and huggs (with my mask on of course.)

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