A Good Life with Dementia 2019 – What We Learnt blog 2/3

Over 6-8 weeks people living with dementia as course tutors and people living with dementia as learners spent time learning and sharing together. – this is a new way of learning at a pace and in a place that is comfortable, welcoming fun and non-judgemental. From all our sessions, here is a list of what we learnt.- Start spreading the news.

A Good Life With Dementia 2019 – What we Learnt

The Course

  • Our course matched the questions of the learners – Of Course!
  • We are all experts by experience. Professionals can only learn so much from a book – that’s why we put this course together – who better to learn from?
  • We can share our experience to help each other avoid some things and find out about others.
  • Our care partners agree that properly listening to people with dementia is great and really beneficial too.
  • We’ve all got something in common – a hidden disability- and we can learn from each others’ experience.

About Dementia

  • Even the experts aren’t experts. Currently the most certain thing about dementia is the uncertainty
  • What is dementia? – It’s a nuisance.
  • It’s something to do with brain cells that can’t be re-capacitated.
  • Our experience of symptoms are all very different.
  • Challenging behaviours- that’s what other people think we do!
  • There is a physical organic process going on and IT IS NOT OUR FAULT.
  • You might not lose all 100 billion brain cells at once, but if you lose the ones that make you leave your shopping on the bus, it’s not a help.
  • It’s a bummer of a diagnosis but if on top of that you have silly arguments and tensions with your nearest and dearest well that is too much and unnecessary.
  • Dementia – it’s nothing to be ashamed of

The impact on our relationships

  • Sometimes partners with the best of intentions can make us get in a pickle
  • I wish my wife was here to listen. Society doesn’t realise the impact of dementia.
  • Readjusting to having dementia is a real and current difficulty for us as couples.
  • Dementia has meant we do more things together now as a couple.

Adapting to the world around

  • ‘Other people can be patronising – even friends. They can’t seem to communicate with me well.’
  • Once the medics have done their medical bit, the next step is to adjust to living with that diagnosis in what can be a very disabling society.
  • There is a real benefit in signing up for research projects
  • The best activity is the one you will do!

A good life is

  • To be who you are, to be seen as you wish to be seen – like the opportunity to get out with the dogs for a blow-out.
  • To be able to sail the ship of life into a safe harbour
  • To be able to flaunt it if you’ve got it! – and to carry on as normal.
  • To still be treated as an individual.

And two important points

  • There is no danger of us sugar-coating dementia. We know that anyone of us could have moments where it all goes ‘wibble’ – and that’s really upsetting.
  • We start with nothing, we end with nothing, everything in between is sheer profit!

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