Living Beyond Dementia™ can be difficult

Kate Swaffer Front coverThis month on my Living Beyond Dementia™ site, I thought it might be important to write about how bloody hard it is to live like this, and how many people without dementia either don’t want us to, or don’t believe it is even possible to live beyond dementia.

You might wonder, why would others not want you to be living well with dementia, or better with dementia or indeed, Living Beyond Dementia™, or whatever is your preferred term on living with dementia not only dying from it.

If I had lost my legs in a car accident though, I would have found ways to keep living, and that would have taken a significant amount of effort and support.

Oh, and rather oddly (!?!), others would have offered me support to keep living.

Dementia is, quite frankly, no different.

Even though I absolutely know it is a chronic, progressive and terminal illness, with NO CURE, why would I not want to ‘fight for my life’, in the same way I would, and everyone else, would support me to do, if I had cancer?

I actually feel like some people without dementia simply want to keep the power and control they have always had, and I also feel for many with dementia, that because their hope was taken away when they were Prescribed Disengagement®, they think there is no point. Fighting for you life with dementia is also like training for the Olympics, and really hard work.

Living Beyond Dementia™ is far more difficult than it looks, and for some, dementia may simply mean getting on with their bucket lists, which is totally ok too.

But for me, I want to work to support my health, which in turn might (I believe has) support slowing the progression of the symptoms. I do know that all of the holistic and healthy lifestyle related things I do are probably not a cure, even though there is emerging evidence to say they are reversing cognitive decline for some.

In countries where euthanasia is legal, very few choose this option, as mostly, people have an innate desire to live and to fight for their lives when faced with illness.

It is complete madness that we are not supported to do that with dementia.

The calm swan, paddling furiously below the surface, actually sinks if it stops paddling, therefore it makes logical sense if we use the analogy for how people continue to function with dementia that we keep paddling as hard as we possible can. And other should support us to do so, with disability supports, and with positive language, and with changed attitudes.  We need to, to stay afloat and to live beyond the sadness and stress of having a  terminal debilitating disease.

Whatever strategies you would provide for your child if they had dyslexia, or cerebral palsy, or any other physical or intellectual disAbility, or for someone after a stroke or head injury, then think about applying them to help you live with the disAbilities caused by the symptoms of dementia.

Actually, if you have dementia, you and I have a human right to demand them, in the same way all countries provide wheelchair ramps and hearing loops.

Now that we have the United Nations Conventions of the Rights of Persons with DisAbilities (CRPD) very firmly on the global stage of dementia, we will move forward to eventually realising these human rights. I hope in my lifetime, but if not, I certainly feel it will be in my sons lifetime, and I am hopeful, and thankful that I have been partly responsible for making the demand in Geneva last year at the World Health Organisation First Ministerial Conference on Dementia.

Working hard, to Living Beyond Dementia™ has for me, been worth the effort.

Others more newly diagnosed with dementia who try it, and who ditch the Prescribed Disengagement® too, find the same result, and they start to reclaim and reinvest in their own lives, and in living with dementia, not only dying from it. Shite, some days I walk in circles all day, and others I can’t work out what to do in the shower without needing my laminated cheat sheet, but, really, that for me, is not a good enough reason to give up and assume a pseudo death…

Maybe just to annoy Mr Dementia, otherwise known as Larry in this house, or perhaps even a few others, I plan to flourish in spite of dementia...

Oh, and I guarantee long term (it has been short term but intense suffering the last 12 hours), I can guarantee in my life that long term suffering in my life is optional!


13 thoughts on “Living Beyond Dementia™ can be difficult

  1. Thanks Kate. You know I an advocate of “Living The Good Life With Dementia!” One day I’ll send you a list of all the wonderful things Gregory was able to do, even as some of his abilities began to and succeeded in failing. Right up to the end!

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  2. Ouch! So sorry that you have had to put up with being treated badly (as mentioned in the poem that is linked to the end of your blog post) 😦 And it’s probably not a “one-off” random event because people like that are always like that ….. so sorry that you have to face things like this 😦 😦

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  3. I love the swan analogy and always appreciate and respect your persevering attitude. I am so sorry some people harass those who manage to stand tall, speak the truth, and keep their personal power, encouraging others to do so as well. Thanks! Go, girl!! 🙂

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  4. Thanks for this post Kate: thank goodness Dom introduced me to you as you make suffering the uninitiated almost bearable. I hope that in our lifetime Prescribed Disengagement is seen as dementiaism. Does it need a further trademark?

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