NotanOT

Not an OT?

This is a palindrome. It spells the same both ways, front to back, back to front.

And that is pretty well where the intelligence stops.

….

This morning I had a visit from an Occupational Therapist. It was a follow up from my recent visits to our Falls Service. I have been wobbling a bit more recently, and nearly falling a few times.

A few weeks ago the falls OT gave me useful exercises to help me be steadier, for which I am grateful.

Today’s OT was different. She visited me at home in order, presumably, to look round the house and see what I might need to adjust or add to help avoid falls in future. I thought it would be good to see if there were any suggestions that would help me.

So along she comes. She says we can sit outside, to avoid using masks. OK.

She tells me she has read various notes from the falls service and produces a rubber end for a walking stick.

The dog, of course, went mad, because it smelled like a ball. It WAS a ball as far as she was concerned, and she kept diving into the OT’s pocket and wining to get it.

Dog in car.

And on we go. I don’t use my stick inside, only on walks on rough ground if I am feeling tired. So rubber end? No thanks.

Then…are there any trip hazards in the house?

Well, we have some rugs but they are quite thin and lie flat.

Do you have stairs?

(This looks like a house with stairs! Not a bungalow and not a block of flats.

Yes. And there is a banister up the inside which I use and that is fine.

So is there anything you have difficulty with?

Um. Well, it’s just that sometimes I wobble and nearly fall. And I can trip over things if they are on the floor and I forget or don’t know.

Ah.

Anything else?

I did wonder whether a grab handle would be useful in the shower.

Ah. Here are some websites where you can buy suction handles. But make sure you check it every time before you have a shower.

Time between sentences drifted a little longer.

So what do you usually look for or ask about when you visit someone with dementia? I asked.

Well, the same as today.

I say, as long as I am careful to think about everything I do, before I do it, I am usually ok. But that is tiring. And it is the tired days when I am more likely to wobble or fall.

Do you have a routine?

Yes. And I like to stick to it, though it’s not rigid.

Good.

…………?

So I think you are doing really well.

I’m sorry, I feel I have wasted your time.

No, no. It’s what I’m here for.

And with that she leaves.

….

So what the hell was the point of that visit?

She didn’t even go inside the house!!!

She didn’t look round the garden to see if there were falls risks. (There are.)

Total waste of her time, my time, and my tax.

I know for a fact that there are some great OT services out there. This was not one.

(And it’s worth adding that she missed the first booked visit two weeks ago because she did not get or pick up the ansaphone message I left for her, which she asked for, to confirm the time.)

I am flabbered by this. Just when I thought I was going to get some useful advice or tips, I find that I know a lot more than she is prepared to demonstrate.

What is the point of an occupational therapist visiting you at home about falls if she doesn’t even go inside your house?

So, back to the campaign trail.

The Mask

The mask

What do you see?

Whom do you see?

Is it the music or the song?

The in or the out?

The you or the me?

And how do you know what you see?

The signs? The sighs. The eyes.

What sadnesses are in those eyes, shadowed by loss and grief?

Smile lines? Grief lines? Trial lines?

Trial? Always on trial, on show, on display.

Which you are you today?

Cheerful, tearful, fearful…

Where, why, are you today?

Loss, hurt, shame, grief,

Hide away in the dark darkness,

Storms waiting to break, striking shocks into your being.

So you turn away. Why wouldn’t you?

There is only so much a soul can bear to know.

The rest, in the darkness, is locked up.

Not forgotten, just hidden.

Invisible? No. It is seen but passed by.

The mask.

Oh, when can you take it off?

When will you be able to feel again, to open your eyes, to drop your clothes?

It is so…so tiring, carrying your mask, acting the role…

Hamlet, Macbeth, Lear, Othello…

Tortured souls, tortured, by grief, pain, lust, unknowing.

Can you lay down your mask? Just for a moment?

For that softness that cradles your cheek,

For the gentle, round embrace of peace,

The delicate, curved rose petal,

Scented of times remembered,

Pure joy.

Do I paint the mask? or the darkness?

A likeness.

A likeness of…what?

Look, look closely, then step back…

Is it an anger line, or sadness?

A frown or a question?

Lips so red and round, or thin and tight…

Hair to the right? or left? Up or down?

Curled or straight?

The eyes? The eyes give you away.

Who is it? Who is it?

Who am I seeing?

Who do you want me to see?

Who will you allow me to see?

And is that who I should paint?

Look closely. Look closely.

Look through the mask.

And what is my responsibility?

There are no rules, no guidelines, no protocols.

Suddenly, I have the power to create or destroy,

To swell or diminish, to round or sharpen.

To lead you gently into scented places you had forgotten, or

To hurl you through your safe stone walls into dungeon depths of hell.

How can I paint you, knowing this? Holding this lightning rod,

This magical, omnipotent conductor…

The conductor’s power creates a sound painting from black and white notes.

Different, every performance, dynamic, changing.

None right, some wrong, always new.

Watch out, then, if anyone wants to paint you!

Wear your best, impenetrable mask, if you want to stay hidden.

A Reflection

Is that really you?

The you you were back in the day?

Painting a portrait, decidedly novel for me, is telling a story.

You tease out the tiny little features,

The lines and creases and shadows,

The tints of colour and grey and gold,

And you find someone you didn’t really know.

The surprise is unnerving, looking back, moving back,

Making a distanced translation of your strokes and streaks,

Into the person you thought you knew.

Softness softens further on the paper.

Edginess hardens into strong lines and bold tints.

Do I try to reproduce an exact copy, pure verisimilitude?

(What is the exact copy?)

Or do I try to alter photographic truth into the person I know?

We view classic paintings of famous people,

Perhaps famous because they hang in our halls of fame,

And we think we see the person they were.

We don’t, of course.

We see what the artist felt he could or should paint.

I paint for fun and, perhaps, therapeutic concentration.

They painted for their livings and for their lives.

I really, honestly, don’t know who will emerge.

I draw, measure, eye up, weigh, and capture sculpture and shape.

Then I paint.

And something a little magical happens as the image emerges.

I am learning to allow my and your brain to shoulder the load.

Less is more.

Suggest. Don’t define.

A person is different every time you meet them.

Mood, health, weather, clothes, hair, eyes…

All different.

And so also their words and thoughts.

But values remain, for most.

And I hope that I sometimes reflect values and empathy in my painting.

I am new to this, and each portrait teaches me something new.

About them and about me, and about painting.

Yesterday I sold a guitar I bought about 50 years ago.

I tried to learn many times in younger years, but just…could not get on with it.

Painting seems to be different.

I get it, and it has got me.

And at last in my life I am not trying to fit a perception of the right thing.

I can create something that is just mine, that others can either like or dislike, but is not wrong.

Thank you, Frannie, for showing me the way.

And is this your idea of a review?

Out of the blue. I was in the greenhouse, planting my tomatoes, which are looking good, with one or two trusses already.

Well at least I can be glad that I do not share that characteristic yet.

And my phone buzzes and makes a noise. Not a ring. Just one of the usual default tones.

Is that George Rook? Yes. This is Alan (name changed to spare blushes). How are are you doing?

Pardon! Alan. Oh. What did you say?

How are you?

Now, Alan works in the local memory service (MPFT…name not changed, to cause blushes).

I try to think out what is going on. What does he want? Why has he phoned out of the, er, blue sky?

More importantly, what do I say? How much detail? Is this about my dementia, as I assume, or other things? And what aspect of my dementia? My sleep? My nightmares? My donepezil? My activity? My wellbeing?

How are you?

Fine!!!!!!

I’m ok.

I thought you’d stopped doing 6 monthly reviews.

Well, you popped up on my computer because I spoke to a year ago, so I thought I’d call you.

Oh. Well, Alan, my symptoms are much the same, slight changes, but I’m ok.

Good. Have you cut down on all the groups and things you’ve been doing?

Um…(doh)…well yes, because of lockdown!

Yes…

…and I’ve pretty much decided to less travelling if and when face to face gets going again.

Good. Travel is a risk.

Eh? Um, no, not because it’s risky…it isn’t. Because I don’t want to get tired! And catching the 0656 train is a pain.

Hmmm.

Well, as long as you’re ok, then. I just wanted to catch up…

(He wants to hang up…ha!)

Well, zoom is a wonderful thing. I’ve got to know lots of good friends, and lockdown has been nice for me. I’m lucky, I know, but the quiet and slowness of living now is good.

Yes…

Face to face meetings can be stressful, and often a waste of time, when you could do whatever you have to on half an hour on zoom. And save a day’s travel.

Yes…

And I enjoy being at home, gardening, walking…

Yes…Well as long as you’re ok.

……….zzz….zzz….zzz

Well thanks for calling.

That’s ok. Bye.

…………………………

WTF…

Why did he call?

If that was a review, as in a formal assessment of how I am doing, what my needs might be, whether my meds are right…it failed.

If that was not a review, it was, um, pointless.

Here’s what I think happened.

The memory service (MPFT) decided over a year ago, and nothing to do with Covid, to stop doing 6 monthly reviews with patients taking a dementia medication, which they, the Memory Service, were responsible for. These were an element in the commissioning contract, and MPFT said the assessments were not really effective, and they wanted to use the funding better. They had decided to retrain some staff to be dementia navigators instead.

Now, at the time, when I found out accidentally about this, I asked fellow DEEPERS about reviews, and the few who got them said they were a waste of time, the way they were carried out.

My last blog covers the ground between last year and now about these reviews, etc.

But because the commissioner had not been told that the reviews had ceased, and she was not best pleased, AND because MPFT have done FA about any new roles in the ensuing 15 months there must have been some exchange of views in a darkened zoom.

So, the message gets down the line to Alan, whom I have met three times, twice in person to talk about improvements to diagnosis and post diagnosis support, but who, like his hierarchical senior, has done nothing and given no response to me. And Alan is told to pretend to do a review.

I noticed that Alan did not say it WAS a review, or that reviews had ended, he just sort of said I had ‘popped up’ on his computer!

My arse.

So what could he have asked me about?

Effects of Covid on my wellbeing. (I volunteered that when he was trying to get off the call.)

Am I managing to do things I enjoy? (Yes, as it happens.)

How is the donepezil affecting you? (How the f… do I know? I get nightmares still.)

How is your wife doing? (Well…)

How is your health generally? Anything else going on? (There is…a lot…)

Specifically what symptoms are you having at the moment, and have they changed?

Is there anything we should change in hour care plan? (OMG)

….

Thus, it was not a review. It was a guilt call. A duty call. As short as possible. And of no use to me or him.

I leave you, reader, to come to your own conclusions. But I leave you with one question (well two).

What the hell are we paying these guys for, and why are they in the food chain?

Shame on you

So, and so, and on…ever onwards around twisty corners through gathering gloom…

Never a simple, straight, light pathway….

Yesterday I chaired a quarterly meeting of our Shropshire and Telford Dementia Steering Group. We started this around seven years ago, roughly when DAAs and dementia friends were thrust into this world. The aim was to bring together influencers and providers and people with lived experience to improve the care and support relating to dementia.

And early on there was some momentum, with good attendance. We’d have twenty people around the table, and we’d want to take on small, achievable projects for change.

Gradually numbers petered, less was ever completed, and the gloom of despair took over.

Our health and care system became increasingly a place of ‘nothing is possible’.

There’s no money. There are too few staff. Staff are off sick. We’re too small to do all this.

CCGs failed. They overspent. The acute NHS trust failed spectacularly, including overspending and underdelivering. And a hugely damaging and appallingly cruel thirty years of poor maternity care resulted in a scandal and national headlines.

I attended numerous Board meetings for years. Asked questions, got no answers.

I watched people who should never have been in leading positions fail catastrophically to address issues.

Now our CCGs have merged, following another (of many) cost saving reorganisations. And a new management of change process has started as a new pupa develops…the Integrated Care System.

Yes, we’ve also had COVID, which has doubtless stretched capacity to do the day job.

……

So yesterday we held our meeting. An agenda sent out last week. Clearly flagging items for updates.

Progress on promised co-production of a new model for dementia navigators.

Review of the annual GP care reviews for people living with dementia (for which they claim and are paid around £350,000 in Shropshire alone).

What support is being provided for plwds in the absence of the withdrawn 6 monthly checks carried out by the local memory service? (Withdrawn 18 months ago to divert money into dementia navigators, not because of covid).

These issues have been discussed for a year. Promises made. Promises broken, meeting after meeting.

So, and so, on, and on…

The memory service manager sent a deputy who had no information.

The commissioner did not know that the 6 monthly checks had been suspended.

The commissioner had no information about the review of GP reviews.

In any world that I ever lived in, and worked in, if someone failed so spectacularly to be do their job, and demonstrated such inertness and absence, they would have been sacked by now.

But we don’t live in that world.

We are totally helpless.

There is no meaningful support in Shropshire. There is no meaningful leadership in Shropshire!

There are admiral nurses in Telford, but not in Shropshire. (remember! merged with Shropshire CCG now…how’s that for inequality?)

There are a tiny handful of Alzheimers’s staff across the patch providing some information and signposting to a few.

….

And then, get this!

The memory service was called out for carrying out a dementia diagnostic assessment over the phone with an elderly person. ‘Oh we give people a choice of face to face if they want.’

Actually, no, this man was not given a choice. He was asked a handful of questions and given a diagnosis over the phone.

Appalling, disgraceful…

It was about then that tears welled, fury boiled, and I threatened to leave the meeting.

Another appall…A family carer had called Shropshire council to get help looking after her husband (with dementia). She needed some respite as a carer.

The council person asked if she was a self funder. Yes. Well, in that case we cannot help you. Come back when you run out of money.

I raised this appall, which had actually been addressed following my complaint, two months ago. It turned out that one adviser thought that self funders could not be given any help or information, and had been putting that out.

Training? Monitoring?

What the hell is going on? Why does it take personal interventions (via our DEEP group in fact) to get the right things to happen?

It beggars belief.

Last week was Dementia Action Week.

This week is the Alzheimers’s Society conference. I am speaking later this morning (with Wendy and Chris) about what we wish we’d known when we were diagnosed.

I wish I’d known how bloody useless and incompetent post diagnostic support services are here. I wish I’d known that I’d be wasting seven years of my life influencing and lobbying, hoping against hope, to get change for the better.

I write this blog to expose this complete, utter bollocks of a mess we have in Shropshire and Telford in our dementia services.

I write it to shame those who might read it into either getting something done or going somewhere else.

I write this blog because if this goes on for years longer, there are 6,000 people living with dementia and 4,000 unpaid carers in Shropshire and Telford who are being ignored, and whose lives are blighted not by dementia but by the incompetence and obfuscation of those paid to provide care and support.

How can I chair a group which is so blatantly ignored and utterly powerless? I wonder.

But how can I give up fighting for what we should be getting? I cannot.

I love Shropshire. But just now I wish I lived somewhere else.

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.