What really matters?

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.

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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.

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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. 

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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.

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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.

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19 thoughts on “What really matters?

  1. You have ,and still are an inspiration my friend, but I know exactly how you feel, I am one year behind you in age, and yes, I am sick of hearing the word dementia every day of my life, and hate the sound of doors slamming shut back into the cosy world of boardrooms and experts and estabishment scenarios of unqualified ,so called experts!!! I have to admit I exclude them from my observations, , I do enjoy working with their innovative Ideas as its us, the people with Dementia who drive our own destiny with them as guides in the back ground not in the vanguard.

    I like you george, get tired and edgy , and Indeed, we do need our own time and spce to recover, the endless travel does take a toll on ones resources, but personally , I still have a few cards up my sleeve to deliver, and I think over all george, as a close group of friends through different organisations, we have had a bit of success and had voices heard, of which a lot is down to your articulate, intelligent vision. I do hope our paths will cross [even for a drink or two] in the future and your work in our community will always be upheld in the highest of esteem. I do hope Lupin will enjoy your company on a more regular basis, and your family also, I leave you with my and Tommy Dunnes best wishes.

    Liked by 1 person

  2. George, I have enjoyed your forthright writings and interesting images which always emphasised your point so well. Equally, I understand your wanting to live a more joyful life focused on what matters most to you, with less frustration at a system that doesn’t yet understand living with dementia. Enjoy your garden. Enjoy your walks with man’s best friend. Enjoy!!!

    Liked by 1 person

  3. I was saddened to learn that you are stepping down from many things George, you have been one of my inspirations and for me you have achieved a lot.
    I understand your reasons and frustrations, I myself feel we are still where other conditions were 40 years ago and the professionals are still stuck in their ivory towers doing and perceiving things the way they have always done, refusing change lest they lose some of their power.
    I’m sure Lupin and your family will benefit from having more time with you but don’t be a stranger, you have earnt so many friends over the last 10 years and the peace and relaxation you are now enjoying.
    Keep fighting and keep writing your blog, your words will still have great value.

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  4. Thanks so much. I will indeed not lose touch and will continue to work with Innovations and Dementia UK. I am off to my local hospital board meeting this afternoon to remind them about the 50% of their inpatients, yes 50% yesterday who live with dementia or MCI, and whom most staff do not understand. Cheers

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  5. George,
    I have nothing but the utmost respect and admiration for you. I am sure that you have influenced everyone you have met over those ten years and always to positive effect. I am pleased that you still have the energy for long walks with Lupin and perhaps Alfie, Freya and I may bump into you walking through the woods beside Colemere, after the ground nesting birds have flown and I can walk them off the leads again. It would be a delight to catch up with you, to see you relaxed and enjoying your retirement at last. Stay well sir and thank you for all your efforts, somewhere along the road someone will finally hear a whisper of one of your kernels of wisdom and realise that things can be better and they will finally see the light and make the necessary change happen – and your un acknowledged efforts will have been instrumental in that, and Thank You for that.

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    • Chris, thank you so much for your kind words. I am not giving everything up, just making sure there are a few days each week not at meetings or travelling. Hope you are well and gainfully employed…even paid!!

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  6. Dear George Rook,

    I have followed your truly inspiring blog and am sad that you have decided to call it a day. I understand the decision particularly on the basis of finishing the enterprise before we have a sense of becoming stale. I have recently given up writing a monthly column for my local newspaper. The prompter was the arrival of Boris and Donald not to mention Brexit.. seemingly nothing to be done about any of it. I did put the articles together and had an exceedingly slim volume published – night that be something for you to consider?

    Kind regards,

    Joyce Brand

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  7. Taking a little respite, or a “sabbatical,” might just be the pause that refreshes. You’re right on point, though, it’s a frustrating endeavor to make an impact, but there’s no question you’ve provided insight and have raised awareness, all the way across the Pond. All the best, George!

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  8. dear George, how I loved what you have written. I am feeling very much the same. Enjoy the good things. But you HAVE made and DO make a difference. warmest regards and deepest respect. Paul

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  9. George, know exactly where you are coming from, Rob, my husband and I started off trying to raise awareness of young dementia. TV, radio interviews, conferences any opportunities we took them. Then I began to realise it was not reaching out to any new audiences, people only take this onboard if it affects them personally. We still socialise with other families affected by young onset dementia. Things haven’t changed and that is sad. I still sign petitions that should help people like us, but have certainly taken a back seat. I have enjoyed all your hard work and had hoped it would make the difference that we all need. You deserve your own time, enjoy.

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    • Thanks, both. I am sure we DO make a difference, here and there, and change awareness and attitudes, but, yes, it is disappointingly slow. Think I will go on blogging now and then. Cheers

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  10. Pingback: In the Blogs – August 2019 – When The Fog Lifts

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