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.