Push on, Sysiphus

What is this life if, full of care,

We have no time to stand and stare?

Standing and staring is the myth, the myth of

Dementia, while Sysiphus sweats at his task:

Push that boulder, keep pushing, keep heaving…

Perhaps caring is sysiphean?

Perhaps when you think you have got to

The end of the day, and night

Draws near, and sleep, sleep…

Next morning, or sooner, you awake to…

That bloody boulder again.

However striking and lovely that natural piece of rock is,

However much you really want to love it, embrace it,

It really is a nightmare of pain and ache and sweat.

So also, but different, is this damned disease.

It never leaves us.

We may yearn for sleep,

Uninterrupted, deep sleep,

But we know it’s unlikely to come.

We may stand or sit, we may stare or watch or glance,

To the outside we may look distant.

(And indeed you might be distant too.)

But inside we push another boulder.

We start things but rarely quite complete them.

We do things that you think are impossible.

We learn new tricks, we old dogs.

And, if you stand and stare, we can teach you a few things still.

And you can get to know us.

But you have to stand and stare, and be there.

Here. Beside us.

Every day can seem like a repeat.

For both of us.

We never know when it’ll be a good one, or

A terrible one.

We must wait, breathe, hope, breathe,

Keep breathing, keep breathing…

Sysiphus struggled on because he had not choice:

Punishment, torture, enchainment by Zeus.

We too keep going because we have no choice.

And just now and again,

When we’re not expecting it,

When the awful reaches the horizon,

Now and then we have a

Wonderful day.

About death and life

Death: 1

After all, there is nothing.

Life lived, on a balance wire…

Steady, steady…must stay alert…

Upright.

Yes, stay UPRIGHT.

Don’t fall.

Below is the darkness of hurt and despair.

Ripples disturb the glistening reflection of

Calm, serene sky above.

Beneath those ripples are…

No! Don’t look deep into that dark.

Just STAY UPRIGHT!

Look ahead, never down.

In dying I will wobble a little more,

Hesitate, move my hands to keep steady.

My breaths will come less easily,

Less frequently, less deeply.

I will stop – on my balance wire –

And just hold the air, still at last,

As light fades, dulls, and falls.

No suffering. No pain. No struggle.

A gently slipping away into peaceful

Nothing.

After all…there is nothing.

Death: 2

Above all…there is truth.

Beauty is truth, truth beauty.

That is all ye need you know on earth,

And all ye need to know.

Keats wrote that 200 years ago.

But what, after all, is beauty?

What is truth?

I say, life is beauty and life is truth.

Not the life that we hubristic humans

Bestow on all around us.

We, clever ones, interpret everything as opportunity…

To prove that we, we humans, are

Gods of all we see.

Look on my works and despair,

Said Ozymandias.

Look what happened to him.

Two great trunks of stone in a desert.

No. Truth and beauty are all around us if we

Look and see.

Nature.

Yes, you can explain it.

Yes we can, if we dare, alter it.

How often do our changes work out well?

Nuclear physics?

Pesticides? (what is a pest for goodness sake)

Burning coal and oil?

Yes, we human beings have huge brains.

And yes, we can learn and experiment and

Create new uses for what grows around us.

We are sentient.

We feel, we reflect, we work things out.

(We’re doing well at that, aren’t we!)

Above all…

No – aound all – in all –

Truth is beauty, beauty truth.

We diseased ones may turn away from life’s

Lifelong, desperate, clawing for more.

(Than whom?)

We turn back and look at the truth around us,

The wonder, the beauty, of natural life.

In the moment? Is that it?

Wordsworthian grandeur in the simplicity of just

What is here, around us.

We learn to be children again.

The 6th age? Wisdom?

We see what is there, not

What we want to see.

And it!s been there all our lives.

The natural world just does what it just does.

(In spite of our attempts to control it.)

Growth.

New life each year, every year.

An endless cycle of rebirth and imperceptible change.

Aeons of regrowth and imperceptible change that

We humans cannot grasp.

Ants die. Birds die. Elephants die. Trees die.

We die.

Why do we need to explain our own

Deaths and diseases as part of some grand plan?

Predestination? Why?

Hell or heaven? Why?

A compassionate God?

Yeah? Explain that one.

We just are. We live because we were born. And we will die.

I watch a duck’s new brood reduced daily.

9, 8, 7, 6…

Pike. Fox. Gull. Cold.

What does Mrs Duck do?

She gets another brood.

It’s sad only if you want it to be.

It’s life. It’s loving. It’s natural balance.

Neither right, nor wrong.

Look and see.

Listen, smell, feel.

Ozymandias fell apart, destroyed,

Or perhaps just weathered away by blasting wind, sand, rain and ice.

His works? All gone.

A sentimentalist looks back at the past and wishes to relive it.

A romantic looks back with joy but knows

It is indeed the past. Gone.

Life is…living.

Death is…not living.

Why would ants not go to their paradise, if we can go to ours?

There is nothing after we die.

Just…a big blank nothing.

Can you understand the infinite infinity of space?

Look up at the stars. Billions of other worlds.

Billions of clusters of gases and rocks,

Ever expanding out from…what?

Something exploded. Something that contained infinite mass,

Condensed into a microscopic atom of everything.

That is the mystery.

The rest is everything that evolved from t hat

Massively compressed atom of everything.

We humans are clever, yes,

But what have we done with our brains?

We will eventually (soon in the billion year calendar)

Ruin the environment that gave us sentient life.

Our world, the universe, everything…

Will go on.

New life will evolve.

A virus will mutate billions of times.

Chromosomes will change.

This is nature. The natural process.

It is our narcissism, our hubris, that make us believe

We are the centre of our world.

And it is our narcism and hubris that make us believe

There must be a reason,

A Grand Plan,

Which put us at the centre of all life.

No.

We’re just a temporary spin-off.

The dinosaurs were here for 100 million years.

We have been here for just one million years.

They were done for by…

The return of those rocks from that

Massively compressed atom

That exploded 13 billion years ago.

When you stop looking through the wrong end of the telescope

You will see what is in front of you.

You will see what is beside you and behind you.

Natural beauty and truth.

And that is what some of us diseased ones

Are learning.

You’re born.

You die.

In between…

Beauty is truth, truth beauty.

Darwinian Britain

Are rights only applicable when it’s easy to apply them?

Do hard won rights become an irritating distraction when the going gets tough?

Is disability sliding back into the dark corners? Behind barriers?

It certainly seems like that.

The Covid pandemic shifted priorities, understandably. Emergencies call for emergency measures. Priorities for action and for spending change to meet emerging needs.

Stay at home. Protect the NHS. Shield yourselves.

For more than a year, now, we have been suspending normal life, but I am not aware that the laws in this country have been suspended. A few, yes, to allow government contracts to be issued quickly (without scrutiny).

The Equalities Act was not suspended. Just ignored.

People living with a disability have been hidden away, told to hide to avoid Covid. And we have indeed hidden.

We’ve been so hidden that the services we need for everyday quality of life cannot find us. Or possibly are not really trying.

We’ve become invisible. And what you can’t see, or hear, can be ignored.

I am generalising of course, and I’m sure there are examples of good support to those with disabilities, but I am beginning to read and hear of more and more who have been ignored, and left to their own little piece of darkness.

Stories of councils refusing assessments and support because their funds have run out.

People living with dementia having no contact at all from already sparse health or care services.

A person with dementia who had a severe stroke and was admitted to a care facility. Eight months later he has not yet been assessed for eligibility for care or ‘continuing health care’ funding. (Not for want of trying by their partner.) And they have had a demand for fifteen thousand pounds fees.

The millions who have been shielding from all physical human contact…including many who cannot have vaccine for medical reasons…when are we going to get out again?

There is considerable public support for a covid vaccine/antibody certificate, to allow access to bars, shops, sports venues…Ok. It does seem logical. But look again, and ask: is it fair, is it legal, to prevent a person from visiting a place, or from enjoying a little pleasure/leisure, because they have a disability?

Does a crisis mean we should abandon commitment to fairness and equality?

Does a crisis overrule the rule of law?

Or does a crisis mean that our society should make more effort rather than less to support those who need it?

Several politicians in government said they would find whatever funds were necessary, for the NHS, for council services, for furlough, ‘eat out to help (the virus) out’, etc. But their priorities seem to have forgotten the unseen people. Shielding support was appalling…remember those ‘rations’ boxes?

One measure of civilisation is how we look after those who fall into difficulties. I think we are failing this test. And I, like others, worry that progress in equalities has slipped a long way backwards.

The clear messages that we see and hear around us, in words and actions, are now:

Survival of the fittest.

The strong get more. The weak get less, and can go hang.

Get on your bike (if you can). (Yes, back to Tebbit times.)

We don’t care about those who fall by the wayside, or under the feet of crowds.

Britain cannot afford to care about the invisible millions with disabilities.

Darwinian Britain.

Populism.

Dispensation with the truth.

Pocket lining.

We are in a precarious place. We must not let society disintegrate.

Zoom Zoom Zoom

I am going to celebrate the wonderful friends I have made since being diagnosed.

It’s almost seven years now, and seems like an age ago. Like everyone else, I had no idea that there could be a growing community of people living with dementia who were going to disrupt the established rules and behaviours around the disease.

Why was I unaware? Because no one in the establishment knew…or cared to find out. Because they did things how they did them. And after diagnosis there was really no hope.

They gave each of us a riskerectomy and told us to prepare for death.

But then, well, somehow, by chance, I found out about a ‘conference’ meet up in Llandudno, where I met some of the most wonderful people in my life. No names; they know who they are.

Actually, one name. Chris Roberts. It really was him that lured me into his den of friendship and disruption. And the DEEP network.

From that weekend flowed my stream of activity, meandering wherever it took me. London, Manchester, Birmingham, Sheffield, Cardiff, Nottingham. Every event brought a few of us together for a shared day or two. We often wound up near/in a Wetherspoon. Or a pizza restaurant. Remember that amazing tenor, Damian, drowning us all with his beautiful voice in Doncaster?

Conferences, training events, consultations, planning days. Speaking truth to the establishment, hoping to influence change. Often telling others starting their journeys what is possible, encouraging, mentoring…leading.

But we met only occasionally, and often by chance.

Our networks expanded. More people living with dementia became involved in the work. We shared the load, broadened our backgrounds and skills, developed trust and togetherness.

Then came Covid. All our travel and meetings stopped. Abruptly.

And thus erupted…ZOOM.

For a year many of us have had weekly zoom meetings. Chats, jokes, catch ups, sad moments.

We’ve done serious work on research and ethics, dementia pioneer projects, dementia diaries, and craftivism.

We’ve helped each other, led creative craft sessions, made films.

We’ve shared our blogs about our own lives and our work together.

Above all this though, we have grown wonderful friendships. We look forward to the sessions that mark our weeks. And God we have fun. Stupidities (and crudités) that might never happen face to face in a busy day.

We have sorted out into groups that mix well…naturally. Some leave, some join…just like any other friendship group system in normal times.

We have missed our families, and our hugs…Oh our HUGS. We’ll have to hire a secret venue in the summer so we can just hug, unseen. (20 seconds for trust…remember.)

When days are miserable, or pain is unbearable; when loneliness hurts and there seems no point…we can look into our diaries and…there…next Monday…there’s the next Monday Madness, or Tuesday Tonics. A DEEP group facilitators meeting, or the dementia diarists.

There’s always some crafting that we can do, painting or carving or taking fabulous photographs of barn owls or teal. The moon wins for popularity just now.

There’s the allotment or garden. The lanes and hedgerows. The park.

But as evening draws in, and for many a long sleepless night, we can always remember the next meeting to look forward to.

That, my friends, is what the last year has given me. Your friendship and trust and fun.

Thank you all.

Hurt

Perhaps only those who have been hurt can feel hurt.

Perhaps only those who have experienced joy can feel joy.

Perhaps only those who have felt the fist of anger

Can deliver that anger.

Perhaps only those who have always known contentment are the ones who can be content.

Unhappiness breeds unhappiness.

Just as joy breeds joy.

And fear creates fear just as

Hurt germinates hurt.

A clock can be turned back;

Ours cannot.

Is there some magical anaesthetic?

No.

The trick,

And it is a trick,

Is to undo the unundoable.

Look back in anger and you turn to

A pillar of salt.

Hang a thick, thick curtain behind you

And look forward.

Leave the past where it is,

Entombed in a sarcophagus of its terror.

Climb out of the hellish inferno

Into light.

Look out, see, and be amazed.

Guilt

Nature abhors a vacuum.

It doesn’t do guilt either.

Whereas we human beings,

Gifted as we are,

With absurdly large absurd brains…

We can learn and talk

And make and take.

We can feel and reflect

And destroy and create.

But we cannot forget.

We are the lucky

And the unlucky.

For once locked in, those thoughts cannot be lost

Save by disease and accident.

And death.

We are doomed to wander through our minds,

Ancient mariners who have to tell our story

Just…just to lower the depth of guilt and horror

That can engulf us.

The oak tree stands and watches

As we pass below, wrenched by demons and horrors,

Tortured by guilt.

The wise sit under the branches and look up

And listen to the wisdom of that old oak.

Turn the noise off

It’s a month since I wrote a blog.

I’ve run out of things to say.

The old activism has been squeezed from my arteries, as my world has closed in.

The desire and drive to make change happen and to address unfairness have diluted, and I more and more watch from a distance.

Meetings and conversations used to trigger thoughts and reflections, and blogs.

Now, listening to the radio’s many really interesting programmes lead me to write from time to time.

But I just looked at the Pathways young onset dementia facebook page. I saw that many of my dementia friends use it, or are mentioned there. I find Facebook very hard to use. With only occasional visits, I have never quite got the hang of it, and unlike some apps, the logic of navigating the site just does not work for me. It’s mot intuitive, at least not for the way my brain works.

I also have found that much of what gets posted on many pages is, well, plain boring and of no interest to me.

So what should I write about?

It occurs to me that not meeting people frequently, just in the daily trivia of living, means we have lost the opportunities to loose out our frustrations with what we read or hear, in the course of those ‘morning…you all right?’ type casual conversations. So we can be tempted to let off steam in blogs or tweets, or Facebook posts instead.

I enjoy playing around with words, and creating sketches out of the absurdities and sheer hypocrisies I witness, in government and in wider public life.

This morning I listened to Ghislaine Maxwell’s brother speaking in the silken tones of arrogant, self satisfied wealth, about the conditions of his sister’s custody. Torture? I don’t condone such detention, but let us not forget the appalling reasons why she is in custody.

And yesterday a Lord health minister spoke about nurses being well paid and in secure jobs, so they don’t deserve a pay rise.

We are governed, both directly by government and indirectly by the ‘establishment’, by people who are in a different universe from 95% of us.

Remember the apocryphal image of Chancellor Lamont lying naked in his bath, singing ‘non, je ne regret rien’…after the ERM disaster in the 80s.

Covid has increased the wealth of a few, and wrecked the lives of many. Covid has also distanced decision makers from the reality of our lives, and from face to face challenge.

And yet, and yet…test and trace has 2,500 ‘consultants’ paid on average of £1,100 a day, for at least a year, ie continuously, as if employed. They’ll be paying tax at company director rates on their ‘dividends’, rather than the PAYE the rest of us pay. £250,000 a year; effective tax rate probably less than 20%.

What is going on? The world of cash machine government and financial services has gone mad. And they just go on taking and lying, because they can!

There’s always another fiasco round the corner to take focus away. The royal ‘family’, that increasingly appears to be totally dysfunctional. Another pointless press conference. The daily PR shot of our prime minister smiling and glad handing during a 5 minute drop in. Funny how he has an hour or two for a trip to a hospital, school or dockyard for publicity. Keep the good news and smiles on front pages.

And there I go again…You see how easy it is?

My reality is walking around fields and meres, along canals, spotting emerging signs of spring, hearing birds returning in a week or two, and preparing the garden for summer.

My reality is carving shapes into wood, standing at my bench, and working out how to create something. Carving is taking away, rather than adding. You have to think in reverse. What will be left after I cut this? And every time that intense focus slips…you make a mistake.

My reality is talking to, and seeing, the wonderful friends I have through DEEP and Zoom.

And all the rest is just noise which I can choose to turn off.

Pandemania

So here goes.

Spring is coming. Some movement around the country may be allowed by April. But the virus will come and go and come back again, as it mutates and moves around. At some stage we are going to have trust our vaccinations and meet again.

I have laid off government and NHS organisations in England for a year. I’ve given them a break to sort themselves out. They’ve had Covid to deal with, although an awful lot of that went straight to private companies with zero experience of healthcare. They’ve had to deal with merging CCGs and starting to form Integrated Care Systems. They’ve probably had to deal with demands for cost savings from the centre.

But I (and others) are impatient again for change.

I have just read the Scottish Government’s plan for post covid dementia care. It is an admirable document, with 21 firm ‘will do’ commitments.

Now I am not completely stupid, so I know that not all of every commitment will, or indeed can, be completed. But it is a great credit to them all in Scotland, that between all the organisations and many plwds and family carers they have managed to agree to implement a real plan for continuing their work to improve living with dementia.

I would bet that in Wales there is similar work going on.

The common thread is that both countries have single health and care systems rather than fragmented, quasi autonomous commissioning groups and NHS Trusts. And NHS England has little or no power to tell them what to do. I know this because Simon Stevens told me a few years ago!

So no one at the centre is able to force or influence a single, unified approach to dementia in England. We all know this: the post code lottery is evident everywhere.

I am missing telling truth to power, or at least being a voice among many shouting from the stage.

I am missing being able to influence.

I am missing social and professional contact with dementia professionals and healthcare decision makers.

But always I hear that other voice telling me that ‘we’ have been doing this for many years, with increasing presence and volume, but have had little or no effect. CCGs continue to ignore us and dementia if they choose. The government makes occasional nods in our direction but makes nothing much happen. Local memory services tweak a little here and there, often in response to budget reductions, leading to reduced not increased services. GPs’ interest in change is sporadic, and usually driven by individual interests or experience, rather than evidence based and values driven medicine.

We will not get our show back on the road by just talking to ourselves on zoom. (Although that is the source of all my joy…talking with friends)

We will not get much done by shouting about injustice and unfairness.

What we need is real, face to face engagement with decision makers and influencers.

And we need to use evidence.

For example. Dementia UK has solid evidence of the social and economic return on investment in Admiral Nurse seevices, gathered about three years ago. This demonstrates that the return is at least £1.50 for every £1 invested (and often more) plus much unmeasurable benefit in terms of wellbeing.

And yet around three quarters of the country has no admiral nurse services. They are growing, yes, but many thousands of people severely affected by dementia do not get their face to face help.

The GOV.UK list of what we should expect after a diagnosis of dementia is a good starting point, but it is not mandatory. In fact experience would suggest it is ignored or even unheard of.

A small chink of light in the tunnel is the introduction of dementia specialist staff into Primary Care Networks, another new structure in the NHS. (Or, rather, on the edge of the NHS, since GPs retain their status as private contractors so they cannot be told what to do; just what they will be paid to do.)

I hear that these new dementia specialist staff are bringing renewed interest and knowledge into practices/networks, and hopefully they will be everywhere within a year.

Nothing ever changes overnight, I hear you suggest? We have to wait, accept the tiny changes as they happen, and hope that in 20 years’ time the system will be better and consistent.

Trouble is, many of us will not be here in 20 years. And while it is good to work for something that we will not directly benefit from, it is also incredibly frustrating.

And there you have it: the scales are finely balanced. Do I/we campaign and get frustrated by lack of progress, or do I/we sit back and get frustrated by not engaging in campaigning?

I walk the dog every day.

The postwoman comes every day.

Zooms happen every week.

Groceries come every fortnight.

I still get fishing phone calls which annoy me beyond all understanding.

Life is a bit monotonous at the moment.

Oh bugger this bloody pandemania.

Skye…just because I love the view

Lost the plot?

I haven’t written for several weeks. It’s been Christmas and I’ve been waiting for my head to clear.

Having family here, in segments other than on the actual “day”, was lovely but long winded. And I did withdraw much more than in previous years. Having spent so many hours on my own while others talked, spoke, laughed, drank, it was impossible to switch on joviality for an hour at the table.

I remember with shame one particular and hurtful comment I made, blurting out a rudeness wholly unnecessary. I don’t know what made me do it.

Now I am beginning to get the pre-spring surge of new growth in my blood. Pruning roses and thornless blackberries. Digging out dahlias and gladioli for replanting in March in the new year’s plan.

My friend Dory is getting out in her still new allotment too. I like to think she is digging while I am, working side by side in our favourite places. As lock-up goes on I get more and more warmth from my DEEP friends. Meeting each week, often twice in different groups, chatting, joking, laughing…they are the light in the darkness when I close my eyes.

Last week I joined a meeting with a different DEEP zoom group. All lovely people, but with different things to talk about. Diverse, divergent thinking is good: it corrects the course you can veer onto when only talking to those you know well. Like always reading the same newspaper, you need the other perspectives too.

I was jolted back into my previous world of campaigning, of anger and frustration, this time over diagnosis variation. A person had been diagnosed with Alzheimer’s four years ago, then told last year that it was wrong…he did not have dementia, just anxiety and depression. One consultant might say dementia, another depression. A scan might show change, but tests show nothing.

Two streams of thought flowed into me during this meeting. First, that I ought to be still campaigning but just don’t want to do it any more; second, that diagnosis of dementia is incredibly complex and still quite subjective. The more I read the more I understand this, and the less I feel I should judge. On services’ capacity, support and understanding across health and social care…yes, I will gladly express my criticism. On individual diagnosis, maybe less so.

Getting back to campaigning, I simply no longer want to feel angry and frustrated. I know I should be trying to bang heads together to get change, but it has been such a thankless, fruitless and upsetting task that I simply cannot restart that engine. Hence my withdrawal from dementia friends and communities engagement. It’s like a third and final stage retirement. The first was stepping down to part time working, the second stopping paid work altogether, but doing lots of unpaid stuff.

This is the third step, into letting the world go by, being a commentator more than an activist, and just living in my world of friends and outdoors. I love my new carving hobby, and I’m ready to start sowing seeds in February.

But more than all this, I love my zoom meetings with my bestest friends. I love to take the piss and see them laugh. And I love to feel loved by them. You know who you are.

As I hinted earlier, there are drawbacks to zooming only with chosen friends. Yesterday a local villager called to talk, outside (bloody cold), about her recently dead husband. Of course I listened sympathetically, knowing she just needed to vent, to replay, to reorganise her thoughts and feelings…

But I also thought, I really do not want this. She is not and will not be a friend, just a local acquaintance. We do not share similar views of the world, and I now find it harder to withstand being shaken around by people I don’t agree with. It’s like I want to just be in my own cosy and probably prejudiced escape room on my own. And invite in those who will not disturb my comfy, comforting thoughts.

That, I think, is a side effect of this isolation. But should I worry? Probably not. Firstly because there is nothing to be gained from worrying. Secondly because we should all ignore those ‘shoulds’ and ‘oughts’ and just do what we choose and want to do.

Suspended

I look out through the glass.

Down there, a peaceful orb rotates calmly,

Imperceptibly,

Moving round,

A little squint.

Off balance but

Perfectly balanced.

and

In my glassy capsule

I am above, away, at bay.

I have no meetings, no tensions,

I lie and wait, and dream,

And gently rotate each day

As clouds drift and gust across my view.

I am above and away

And below and inside.

I see cloud and sun above, and

Cloud and sun below.

I am, I suppose, neither

Here nor there

But both.

I long to escape my capsule.

But here I am safe,

Far above the confused reality of earth.

Far below the peace of an unknowable universe.

I am in limbo, suspension.

The inferno burns.

The universe winks

Silently.

I am in limbo.

I see both but envy neither.

The inferno, the universe…

They are inside me, inside us all.

Outside, trees continue to grow.

Bulbs are dormant, awaiting warmth.

Birds begin to struggle for food but

Pair up when sun shines and rain abates.

The earth slowly spins on its squint axis.

Perfectly balanced.

Up here, I wonder whether I shall ever return,

Or forever just look out and wonder at the glistening orb,

Sheathed in whispering cloud.

It will still be there after I have gone.

Our time is limited, but trees live on.