So that’s it.
I’ve stopped. Given up the uphill struggle. Given up the unequal struggle.
There’s brexit…what can I do about that? Nothing. So stop worrying and getting angry about it.
Then there’s dementia. What can I do about that?
I’ve been working – trying to work – with my local health providers and commissioners for ten years. Seeking to inform them, influence them, to change their work providing care for patients in hospitals and in the community, people with long term conditions, people living with dementia.
Co-production? Involving the people who live with these illnesses? Listening to them? Allowing them to say what they need, and how to provide it?
Nah. They know better. They are, after all, professionals. They are paid to know best what’s good for us.
And they have the power. They hold the purse strings. They have the law.
They meet when it suits them and in private. In public they give us bland reassurance, the easy commitment to listen and consult. They say what will get us off theirs backs for a while. The patronising, condescending smile.
Till next time.
And we do it over again. And again. And again.
So I am passing the baton to others.
After a few weeks of growing and mowing, prepping for the wedding, recovering afterwards, I have decided to take my own advice.
What matters to me? What gives me pleasure? What makes me smile and relax, and want to sit down with a book?
Well it’s not sitting in meetings!
For ten years I changed a habit of my lifetime. I started saying yes to every opportunity that came my way. I asked to join groups and committees, to go to conferences, to speak in public.
After my dementia diagnosis I got a new life and many new, very good friends. I joined the circuit.
And I have, I really have, enjoyed doing all that.
And every time a door looked like it was opening I pushed. Often gently, occasionally forcefully.
And I always thought it might be the time that the door might open. If I didn’t push, the opportunity would be lost. So I tried.
Again and again and again.
I have been getting tired of travel. Getting up at 5.30 to catch the 6.56 train for a London meeting, and getting back at 8.00 pm. It now takes two days to recover.
Staying away in hotels. Eating often fairly crappy food. My fault probably, but it just happens, doesn’t it. Not sleeping. Noise.
It’s partly my own fault too. I often end up chairing groups. It’s just what I do. I’m good at it, and like to work to make sure things happen. I don’t want to sit in meetings, go away, and come back three months later to find nothing has moved on.
So I keep my finger on what needs to be done. And that absorbs my time and thought. And I lose sight of…
What matters to me.
Which is why I am stepping back from a lot of stuff.
I admire and will support all those who do this work. Some of you spend almost all your waking hours travelling, working (unpaid), lobbying, trying to influence change. Please, if you enjoy it, go on doing it.
I have seem some signs of change, of a willingness to listen and to involve us. But God it’s slow.
I was 68 last month, and I have suddenly become aware of time becoming short. I don’t feel ill. I don’t feel tired. I have simply lost the passion that you need to go on hitting brick walls and going back for more.
I love being outdoors, walking quietly with Lupin, growing flowers and veg, observing and listening. Seeing the minute but constant changes each day along the same lanes and hedges and woods.
I’m going to walk along beaches, collect stones, watch Lupin disappear into the sun haze over the sands.
For months I have been drifting towards this, but I’ve been held back by fear of boredom. And isolation.
But now I feel at peace with that.
It’s simply time for others to take over. I’ve had enough.
No, of course I’m not going to stop everything! And I’ve got a few commitments in my diary for the next year. But I want to stop thinking about bloody dementia every hour of every day.
And just live.