Well, here’s looking at 2015 with dementia.
It’s been a thoughtful couple of weeks.
Christmas happened…lovely to be with grown up children and friends.
They departed cheefully into another event filled year.
I trudged into a long tunnel, a dark one, with dementia at the end.
They got on with their lives, heading upwards to whatever happens, they don’t know.
I looked down a hillside to what I do know.
It’s not a life sentence.
It’s not a death sentence.
I am me not the illness.
I am not a label.
I am not written off for scrappage.
I know all that.
But it is pretty certain knowledge of how things will go in coming months and years.
Is it better to know that or to live in ignorance?
Mostly I prefer to know.
Mostly I am positive.
Mostly I want to work to make life better for people with dementia.
Mostly I want to keep doing stuff out there.
But I’m finding it hard to get back into the work mode.
The going out most days to meetings, to sit and see observations, ward walks, dementia friends sessions, patients in control seminars…
Do I want to do this?
Is it having any effect?
Is any change happening?
Well I know change happens in small increments
Not Big Bang.
I know that a lot of what I and others do is about nudging, changing attitudes, opening eyes, harnessing values.
But I also know that I need to see some change now and then.
I need feedback from people I work with that it is worthwhile.
That things are happening.
I’ve been reading one or two blogs by people with dementia, courtesy of Truthfulkindness.
One guy said he no longer gives up his time to do stuff that doesn’t get results.
He’s learned to waste time.
To do whatever he wants.
Not to think about what if…
And I am close to that too.
Because I have limited time now.
I know where I am going.
Don’t know how long it’ll take.
But I know the destination.
Why would I want to give my limited time where I can’t achieve anything?
Or where I am not welcomed and listened to.
To people who don’t answer emails or follow up invitations.
To attend meetings where people just talk.
That’s over now.
It’s time to concentrate where things can be achieved.
Not to bang my head against brick walls.
I’m going to waste some time.
Deliberately.
george rook 
Yes, do what is most meaningful to you.
My mom has dementia, and although initially I thought we knew how it will turn out, the journey is full of surprises.
I wish you joy as you “waste” time! May you find no time is ever wasted. Just be, and enjoy.
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Thanks for your kind and supportive words.
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Good one George:)
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Thanks Wendy. How are you getting on?
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I’m doing ok George. Had a bit of a wobble like you over Christmas but back up and running now:) It was never going to be easy as we both know.
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Great post. Meetings where people just talk (no action) are a particular bugbear of mine! You are doing something that makes a difference with this blog – people will read it and they might not comment, but their perceptions might still be changing. All the best, Gemma
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Thanks Gemma. I hope my and other blogs do change people’s perceptions and attitudes to dementia and to commissining services to support people and carers. But I do feel very frustrated with a few organisations or people in them who really don’t welcome patient involvement in co-production at all. Tokenism in some places in Shropshire in the face of people, patients, service users, who really want to see improvement for patients. Sit with us, listen to us, work with us, and we will not be a threat but a great source of solutions and better ways of doing things. Rant over.
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Well said George, both in your Blog and in this comment. Hang on in there, your words are changing people’s perceptions. I have learnt so much, thank you.
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