Egos and introductions

Well. I recently took part in two Teams online meetings. It was a new Equality and Diversity group at a local NHS provider. I won’t give more detail here.

But the meetings were meant to be inclusive, for people with disabilities, BAME and LGBT, and included of course me, with dementia.

Now I still handle meetings reasonably well, and I always stop and ask those who rush or speak too fast to slow down or say it again.

So we start, and the chair goes straight into the agenda. No introductions. No hellos, how are yous. No where are you coming from, or why you joined the group.

So of course I stopped it and asked for every person to introduce themselves. Taking up, oh my God, ten valuable minutes.

Then the agenda items. Two leading players from the Trust rattled through whatever they wanted to say, but did so using 500 words when 200 would have sufficed. And far too fast. Many Handcock and Johnson type false hopes and achievements. I could say misstatements?

I had to stop them and ask about acronyms. (Oops.)

We had about 12 people on the call, and several did not contribute, for whatever reason…but the chair did not encourage them into the conversation. It was purely transactional, on her agenda and terms. Get the business done, get our stamp of approval, and that’s it.

I actually said in the first meeting that the group should be contributing what each of us, coming from different ‘places’, felt was most important to address at the Trust. Rather than being told what they wanted. Otherwise what was the point? I also told the chair that she was conducting it like a face to face business meeting in a rush, with staff who knew exactly the context of the business.

After two meetings following this same pattern, including my interruptions, I was so pissed off I resigned. And I sent a full explanation of what they were doing wrong.

To her credit, one staff member, not the chair or the other rattler, wrote back a full apologetic letter and invited me to stay. But I will not.

….

Then today people on a DEEP Group Facilitators Zoom call talked about group dynamics. We’ve often spoken about those few group members who tend to dominate, who are not self aware, and who probably never have been. They drown the others, especially those who find communication hard. This can happen in virtual meetings too, where body language and frowns, etc, are less obvious.

People are people, and we have to accept them for who they are. But as facilitators our job is to ensure that everyone gets a chance – and encouragement – to speak up. We should not do all the talking, or indeed control activity or subjects; that is for members, all members, to decide.

So how should we behave in meetings, and how should we run meetings?

No one has a monopoly on wisdom or experience, but these are my ideas.

Deep groups, whether face to face or virtual, are based on the principle that they are run by people with dementia for people with dementia. Members are self chosen, and if they return they clearly find the group to their liking. The only criterion is that you have a diagnosis. Although, of course, some groups include those providing care and support.

You know my feelings about that, as carers very easily take over and become the voice of the person/s living with dementia. We never know whether it is with consent, but I suspect it is usually just habit.

But just as carers can dominate either their own partner or indeed the whole group, so also can plwds. We all believe in inclusion and accessibility, fairness and honesty. So we need to be honest if a person starts to dominate. Not just move a few big egos away into a separate space, but actually discuss what they are doing. It might be their disease, or it may be their habit. Either way it is not acceptable. We must teach patience and tolerance where these do not exist!

I used to teach, and the ethos of bringing people out of their lack of confidence, encouraging them to find their voice and speak it, has stayed with me. This also applies to passing on opportunities for engagement outside the group. I have found that by gently coaching and rehearsing with a person they find they can speak in public about their dementia, and they blossom in confidence and activism. It is the most rewarding experience for me to witness.

I suggest we should not separate into those who can communicate and those who cannot, those with big egos and those who are quiet. We should instead concentrate on helping and encouraging others, and hold our own egos and talkativeness in check. It takes a lot of thought and reflection, but the group will thrive as a result.

We need to remember that people may well have forgotten who the others are, even a week after the previous meeting. And in a business type meeting, we need to speak up and demand introductions all round at the start. I think the DEEP zoom practise of allowing 5-10 minutes of good humoured chatter, and then going round each person for how they feel, and what they’ve been up to, is how all meetings which include plwds should run.

We also need to have frequent pauses, reminders, recaps, opportunities for questions. As well as the yellow cards throughout!

But it is up to us to educate others about these things. I have resigned from the group I wrote about, because I have decided that my negative anger after the meetings makes them not right for me. I have said before, surround yourself with positive energy, people whose company you enjoy, doing things you want to do. No more ‘shoulds’ and ‘oughts’!

Those meetings also reminded me of the eight or more years I spent there on the patient involvement panel! Totally pointless! I mean, none of the action points from the first meeting had been done by the second! By the paid staff! WTF?

There are some fabulous facilitators, who really do just facilitate. They don’t dominate, they don’t get off on controlling the group. There are other groups where we know they are dominated, whether by the facilitator or a member. We must challenge these people, in a positive way.

We need to behave in the way we want others to behave. Be the change you seek, as I think Ghandi said.

This is a social movement thing. It’s also perhaps a socialist thing. We look for equality. Fairness. Our values must be those of respect, inclusion, tolerance, and honesty. If we can embrace these we will have happy groups and happier lives.

It is far more difficult to keep quiet than to spout. It’s hard work, and it’s a skill you have to learn. We will get our turn, and so must all the others.

Remember, we can all be teachers.

Too much on my plate

Please stop me from taking on too much.

Just ask me if I really want to do something, or have the time and energy to do it.

If you know me well enough there will be times when you must just say no, not now, wait a day or two before deciding, or do it next month instead.

Yesterday and overnight – another night of vivid dreams and wakefulness – I realised that I have become embroiled, that I have been overheating, and that I have begun to find familiar activities more difficult. Temper temper too!

I had one of my sweep moments cooking the other evening. That’s when I can only see in front of me a chaotic mess that I am urged to just sweep away…onto the floor. It’s my way of clearing the decks of clutter when I can’t see the wood for the trees. (Mixed metaphors abound)

Just sweep in one big dramatic whoosh.

Well I have so far restrained myself, and walked away for a minute, come back and (fairly) calmly put away what does not belong there, clear it all, and start getting out ingredients and utensils.

Yes, it’s that bad. And to cap it, yesterday I also overheated. Began to sweat. Not sure if I was hypo or what. Wondered about Covid. But unlikely now, and I have met hardly anyone.

Yesterday I had two zooms. Both 90 minutes and requiring concentration. Half way through the second I drifted, and was grateful to others on the call for helping out, as I was chairing!

….

Last night I dreamed that I was on my old bike, the old fashioned sort of sit up and be comfortable one. I had gone out early for a ride because I needed space and light and felt just tired. I rode and rode, listening to a book sitting in the front basket being read aloud as I went.

I stopped after some time. It was a local ride, though in very different surroundings. The rear tyre was flat. Easy to repair. So I set to work, on the side of a swimming bath, (don’t ask). Took part in a radio game show while I was there, a comedy thing which I did well in. Amused people.

Then returned to the tyre. I couldn’t seem to quite get it done, just kept moving parts around, unhappy with the awkward place where I was perched beside the water.

Terry Wogan had died. I was asked what I thought. I wondered whether he was just a natural talent or whether actually he had to really work at it to keep it flowing. But the interviewer said people didn’t want to hear anything negative about him just now.

Then I set to again with the tyre. It was not going to work. The inner tube was decayed. Too old. Repaired too many times.

My wife arrived. She waited and waited for me to get the job done, which I continued to slowly mess with. I couldn’t do it. So she put it in the car and we left.

A little later I asked if she had put the bike in the car and she said no, she had forgotten it. Left it behind.

Then we had to fill up with petrol, and I woke up

….

Pretty self explanatory I think. Given the way I had been feeling. I am the bicycle.

It’s given me a less than happy mood today, but also an awareness that I must stop myself from getting carried away. I want to do things. I get enthused. But then I get – more often as time drifts past – overwhelmed by commitment and complication. I need simplicity.

I need to get back in my shed and carve whistles. Weed the garden. Pray to my sunflowers. Walk with Lupin. And do a few fun zooms.

So, please, if you see me offering stuff, offering to do this and that, committing here and there for projects, just quietly ask me to pause and reflect, and even ignore my commitment sometimes. I get carried away, like many others, beyond my declined capacity, and end up with too much on my plate.

And oh yes, I also eat too much, especially when feeling tired and stressed. In the evening. Fresh bread and jam.

Too much on my plate.

What screws your brain?

What causes the switch to flick over to chaos? Out of the blue.

When you’re not looking. When you’ve got up and going and all is well…and suddenly…fog, chaos, anger, Big D.

For some of us the fog lasts for days or weeks. For others it’s just a few hours.

It may be the fog that blankets clear thought, decision making, impetus to just do something.

It may be a headache that refuses to go away and overtakes your mind.

It may be an outburst of anger, frustration.

Perhaps you cannot see what you are looking for, even though logic tells you it must be there. You grope around. Shuffle bits and pieces. Shut your eyes and take a breath. Walk away for five minutes.

One minute you can carry on with your activity, sequencing steps, finding equipment, utensils, ingredients, tools…the next something has blown a fuse and you’re groping.

It might be noise that does it. Like clattering if cutlery or pans and plates.

It might be being interrupted while you’re working’.

Can you just do this?

(No I bloody well can’t because I can’t think of two things at once. And because I am focussed on this.)

You return to your work but that switch has, well, switched.

And you suddenly see a chaos of buts and pieces in front of you. And you want to sweep them all away, onto the floor. Bloody hell. Aarrgh. Shit. Bugger.

You might of course just wake up in a fog. Fuzzy eyed, weary, not sure what to do.

If you’ve got your wits about you, which is doubtful, but you may just grasp a memory from the last occasion, you remember that the best thing is to get a mug of tea and sit down in a comfy chair and just slowly, gradually, emerge into the daylight.

It doesn’t matter about the two or three hours that go by. Just relax, breathe, and slowly emerge from that chrysalis of foggy fuzz.

This is dementia. This is brain disease. This is how we are, and how some of our days are.

And we learn to live with the fog and anger and confusion.

Writing about it, in a blog or diary or journal, helps you learn the tricks you use to get out of it.

And it gives you somewhere to find your own way of dealing with Big D, next time the fog descends.

Name and praise…or shame!

Are Dementia Friends and Dementia Friendly Communities working?

I have heard or read several people posing this question recently. And indeed I have been wondering for some time.

Is the name right? ‘Dementia Friendly’?

Do stickers mean anything?

Does anyone check that organisations actually provide a ‘dementia friendly’ service or environment?

Is there enough/any resource to back up the DAAs and NDAA work?

The Dementia Friends project was the brainchild of (Big Society) David Cameron. He set ‘the dementia challenge’ back in, what, 2012?

It was a great idea. There was (and is) huge need to increase awareness and understanding of dementia, and how communities and organisations could support people living with dementia to remain active and socially engaged.

And harnessing people to get involved in a social movement was certainly a great approach. It inspired many of us to become Dementia Champions and to deliver awareness sessions.

I was never a fan of awards for those who were deemed to be outstanding in various spheres of activity and influence, as awards go to just one person, and leave all the others who give time and commitment feeling a bit dry. No doubt one reason was to have a reason to,hold an event to celebrate successes each year. I was a judge one year, and I really did not want to select just one from a sparklingly good shortlist.

And counting and competing on numbers is not really in keeping with the social movement it was intended to be. Nor does quantity equal quality.

Now, eight years later, with nearly 4 million dementia friends, several hundred DAAs, and two thirds of NHS Trusts signed up to the Dementia Friendly Hospital Charter, it is time to review what has been achieved. Especially while we are locked up/down.

I have been on the inside of parts of the dementia friends movement, as well as being a person living with dementia. I started and chaired my local Shropshire and Telford DAA. I have made around 600 ‘friends’. I co-wrote the hospital charter statements.

I know that there has been very little resource put behind the movement. Just enough to employ regional co-ordinators, National DAA staff, and to create resources…which WE have to print.

The NDAA staffing has fallen in the last year to around 2! Regional dementia friends co-ordinators have shrunk in number and grown in geographical coverage.

So, what state are we in?

I welcome and value the 3-4 million friends who are more aware of what dementia is and how it affects us.

I welcome those (few?) organisations that have really worked to change and to incorporate features of being dementia friendly.

I welcome the bi-monthly meetings of our DAA where we share progress, ideas, plans. And raise awareness.

I welcome the smaller DAAs in our market towns and villages.

I welcome those (few) hospitals and community services that have really tried to change for the benefit of their patients (and staff).

But…

Too many shops and organisations, councils, etc, have signed up, done a few awareness sessions, and then…nothing.

DAAs have in some places become vehicles for local councils or individual egos) to declare their town to be dementia friendly, with little visible, meaningful progress.

DAAs may be running out of steam, with no resources and little support.

Too many NHS Trusts have signed up to the Charter and done very little for their users (and staff).

So, should we now adopt a new approaching ?

What could we do differently?

Well, how about using social media to name and praise good organisations, and shame bad ones?

Larger retailers and other organisations employ social media software and staff to find negative feedback and respond quickly to it. Why don’t we all just tweet or facebook etc the places that are helpful and friendly? And encourage people not to use the others?

So, we could look out for and report shops (like Gail’s M&S) and organisations that are customer friendly and dementia aware.

And report those that are not. (Like Gail’s Morrisons.)

We could really affect footfall and spending.

Gloves off, is what I say.

Name and praise hospitals, or shame them.

Councils, coffee shops, railway stations and train companies…they all hate negative publicity. But at the moment because we are too nice they get away with it. And most of us, me too, hate face to face complaining. So put it out there on social media.

No funding needed. No organisations with vested interests linked to funding. Just – yes – social movement. No certificates to be issued. No stickers. Just real voices of real experience.

Thousands of us. In fact millions.

Don’t be afraid of your voice and power. Use it directly yourselves.

I do, however, believe that dementia friends should continue, perhaps as ‘dementia aware’. It is, when done well, hugely important awareness raising, in person. And these sessions should always include a person living with dementia to give the reality of symptoms and challenges in their lives.

So, let’s start a debate while lockdown continues for many of us. Let’s change the paradigm. Let’s take control.

Be the change you want to see!

Still alive inside our skulls

John Crace, Bill Oddie, Cartoonists, Comedians…me…

Some of us seem to be living on the edge of an abyss into which we long to look but which beckons us to our doom.

It seems that you have to be on the edge of sanity to be able to see the ridiculousness of life.

Artists are famed for their edgy existence, and their ability to see differently. To rise out of their skins and look down in amazement at the beauty beneath and around them.

Or the madness of life and people.

Who, after all, are the mad ones? R D Laing inspired me in my twenties to think of mania as a two edged blessing. The ability to have moments of true nirvana, other worldliness, simply lifting out of the humdrum and aggression and boredom of most living.

But also the other…those frightful downs that take you to the edge of despair, perhaps beyond, where an abyss opens around you and you look down at the inferno of hell.

I am not an artist. I do not have extreme manias. I do swing up and down, and I do have the ability to look at life and see madness around me, and the worst of human behaviours, and to be unable to ignore them. I do have occasional manic episodes of pure beauty, and of pure horror.

In my twenties I had a breakdown and a year’s psychotherapy. It gave me huge insight into my own moods and thoughts, into human behaviour, and into archetypal patterns in symbols and in nature.

My dementia has added another layer of understanding, or perhaps is taking away layers. Understanding…of the brain’s incredibly complexity and infinite capacity.

And losing some of that capacity to make my body and thoughts work automatically, without deliberate thought.

While I and others living with dementia may be unable always to express our thoughts, we are still thinking them. We are alive inside our skulls. We breathe, we think, we live. We may have less control over what others see and hear, and over how are external bits work. But we still think and imagine.

We may lose the faculty to process some incoming data, like smell or taste or sound, or perception of our surroundings. We may lose the faculty to convert our thoughts into words. We may lose the faculty to sequence what we want to do.

But we are still inside our skulls. We still think and feel. But you cannot see it. And you may be tempted to assume that what you cannot see does not exist.

Nothing could be more wrong.

The great value of the artist in society is to see what others do not see. To look at everyday life and interpret it differently.

To stop the humdrum rushing around which blinds us, and to just see and reflect and interpret.

Manic episodes can be appalling or beautiful. R D Laing suggested that we should not seek to classify these as madness. Who, after all, are the mad ones? Those who rush, or just languish, through life without deep feeling, and who live in the middle of the road? Or those who veer madly to the edges, and who dice with death and paradise?

It is a blessing and a curse. But above all it is the artist who sees what many do not. Truth. Beauty. Horror and darkness.

And it is the artist who leads us to greater understanding of living.

Dementia was for centuries regarded as madness. Dementia is not of course a blessing. (Although I have heard a Christian academic suggest it could be.) Dementia is simply a disease which prevents our brains from working in the usual, unremarkable remarkable way we take for granted.

To use a familiar expression:

See the person, not the dementia. Lift yourself out of your usual humdrum assumptions and look afresh. As Atticus Finch told his children, you cannot understand a person until you have walked in their shoes.

While you cannot walk in the shoes of the person with dementia, or any other disease, you can step back, lift yourself up, and ‘see’ what is in front of you.

Forces that pull us apart

What does this brain disease do to us?

How does it change our lives? And our relationships?

How do we adapt to living with it?

Do we do the right thing when we keep engaging socially?

And campaigning?

Don’t groan, but…I’ve been reflecting in recent days on life in lockdown. And I have been hearing lots during Zoom meetings with others.

We sometimes ask each other whether lockdown has had a detrimental effect on our capabilities.

Have we, for example, lost some of our capacity to engage in conversation, or make decisions, our count money?

Are we less able to find words, because we are not talking as much?

Are we finding occasional trips into the world more difficult now, after two months of isolation?

And what is it that has become more difficult?

So…Here are some thoughts of my own and some from others that I have picked up and remembered. I think.

There is a lot of talking to ourselves. There’s no-one else for many of us. My wife works (at home now) 5 days a week, so I am alone with Lupin a lot.

I have always talked to myself a lot, since I value intelligent, sympathetic listeners.

Others have said they talk to Alexa, and listen to her. Ask her questions.

And to themselves.

One or two people have had difficult experiences in the outer world, which have been disabling for a day or two.

I am trying to avoid several neighbours with whom I disagree fundamentally on many things, and who have from time to time been quite rude. (Notable exceptions thank goodness, and they know who they are.)

I remember that when I used to go to meetings, locally or further away, in the past, I often found it hard to sleep afterwards as my mind churned and thought of everything I would have said if I had thought fast enough. (And things I wanted to say but was too polite.)

I find that a difficult face to face with a rude, arrogant or simply dismissive person upsets me for a day or two, more so than in earlier years.

It is, I think, a matter of balance, and loss of balance. Equilibrium. Avoiding overload and imbalance.

My CPU has slowed down, my memory is crumbling away, and I cannot process all those tiny myriad thoughts and flecks that cross your brain every moment fast enough. Each one takes longer, and excludes others. It takes hours, days, to work these through.

It also takes quiet, calm, natural surroundings, safety and sleep, none of which are plentiful when travelling around the country, or to the local NHS Trust.

That’s why the DEEP gatherings at Woodbroke Hall in Birmingham are so lovely. It’s peaceful and loving and safe.

And that’s why isolation during lockdown has definable benefits.

The big negative though may be loss of confidence.

I and others have voiced fear about rejoining the world. Not just fear of the big V, but of the face to face stuff we will once again have to process.

Will we still be able to cope, outside our safe, quiet bubbles?

I think that a lot has been said – rightly – about maintaining social engagement. We absolutely do need to keep meeting friends and family (those we like).

We need to keep doing things that matter to us. That give us pleasure and purpose. That keep us active.

But perhaps we are actually better off, more ‘in balance’, if we disengage from those who cause us to discombobulate.

It’s difficult to disengage in normal times, as we want to campaign for change, and we are frightened of moving into the next phase of the disease. Isolation!

But actually, lockdown gives us a great opportunity to refocus. Certainly I am doing this.

And I still get annoyed when I see a tweet from a local Trust, or the CCG, or read about some health care report in the paper. But less and less. And I no longer look for trouble, aka information.

Equilibrium: ‘a state of rest or balance due to the equal action of opposing forces’.

Balance between needs and wants; ego and id; conscious and unconscious; desire and capacity…

Define it as you wish, as it applies to you. I think we all know when we are ‘out of’ balance, but we don’t always know why. Nor do we always realise when we are ‘in’ balance.

Some people describe their disease as an unwelcome visitor, or indeed they even welcome it and embrace and kill it with kindness. They may talk about the struggle to stay ahead of it, or on top of it…and sometimes activity is what helps us keep on top.

But I rather think some activity is escape rather than challenge. Escape from thoughts, from fears, from knowledge of declining capacity and what is to come.

There is a place for acceptance of what is, rather than hope for what might have been.

That is not to say give up, far from it. But make sure you avoid situations and people that drain you of energy and positive thoughts. Don’t say yes just because you want to be popular, or because you are afraid of being alone with your uninvited guest.

Say yes because you want to, and because you know in advance you will enjoy the people you meet.

Don’t lose that precious balance that is harder to preserve each day.

Lockdown has enabled us to re-examine, to reflect, and to decide what really matters in our later years, and indeed while we can still do the things that give us pleasure.

The graveyards are full of people who thought they were important, and who thought that work was more important than friendship and self.

Examine the forces that pull you apart and work out how to balance them in equilibrium.

Then, my friends, you will be content.

We all need therapy now and then

Thank you for being my therapist

I really do appreciate it. Listening to me when I need to vent, not interrupting my outflowing of septic thoughts or shouts. Just being there, as they say.

You see, just the brain activity in ordering my chaotic and occasionally tortured mind, of forcing them into words that make sense, into sentences (mostly), of restarting my ironic ways of seeing the world and words…this just gets me going again, and I climb out of the valley and see the sun kissed peaks again in the distance, across flat, grassy uplands.

The last couple of days have been bad. Recent events in my tiny hamlet have demonstrated to me that humanity is still capable of being nasty, twisted and horridly malevolent. And that feudal ways are alive and kicking here.

No details here, but my bubble was pricked on two occasions, and blown off course on another, by people who live very close.

And when I walked around part of Colemere the very few people I passed were miserable, wanted to avoid a nod and an ‘afternoon’ as we went by. Not a smile. Just misery.

So I have retreated again, and am trying to recover my inner balance.

Last night it churned through my mind so I just dozed and half dreamed.

I hope it will just take a day or two more to forget it all and just carry on in my bubble.

Meanwhile, I have been thinking and reading about this government’s performance over big V.

It is becoming clear that Boris has sent his closest ministers out to share the burden at briefings. So there has been no consistent message or leadership.

It is also clear that facts have been fiddled and hidden as necessary to cover government shortcomings. Policies denied when inconvenient. Facts hidden when unhelpful.

What has struck me is the sheer implausibility of these ministers’ attempts at empathy and compassion. Whenever Matt the Hancock speaks about his shared grief over deaths, he pauses too long, he stares too intently, he phrases just too deliberately…and we cannot actually believe his words.

The others are pretty much the same. Some look like they expect a shark to jump over the stern and drag them away. Others just seem uninterested. And they regurgitate the same old messages and self congratulation in the face of facts that suggest otherwise.

When Big B is on he says very little in a lot of phwaw words, clenches his hands in the most unnatural way, as if he is carrying an invisible tray (perhaps his butler has Big V), then disappears for another five days.

This is, and we put him there, our leader in this challenging time.

He imagines he is Churchill and cannot but fail. As a presidential candidate once (almost) said to another, on TV, ‘Mr Johnson, you are no Churchill’.

And said non leader B is eviscerated in Parliament by Sir Keir Charmer, when he lacks his rowdy Bullingdon fellows roaring behind him.

I think we are seeing a narcissist who lacks self confidence, and who depends on being loved and admired to survive, beginning to implode.

B lacks confidence, determination and courage. He plays for his audience and cannot see through a long term strategy. He depends on others to do his work.

That is not leadership. That is Etonian entitlement and personality dysfunction.

That is chaotic twisting in the wind.

And I think big B and his chums may not last too many months as this whole, awful mess churns around us. People are seeing truth beneath the rippling surface. And, like Jaws, that truth bites.

Sustaining intelligent life

I am worried.

Big B seems not to be in charge or decisive.

Big V is not going away, contrary to Trumpy’s fantasy.

And lockdown is being eased.

Schools are going to be safe apparently.

Transport is fine, just keep your distance…on the Tube, on buses?

Gateshead and Cumbria and Stoke-on-Trent are behind the curve, with continuing high R.

Yet B wants the economy to get going. And I am sure he would be right to, in other circumstances.

Care homes have been hung out to die. Untested patients evacuated from hospitals into care settings to start the bonfires. No extra help.

Are older people in care not still people? Are they not entitled to good health care too?

And what worries me is that as people return to meeting and working the virus will grow again, and we older people with other conditions will be left to, well, isolate or die.

All the concern about getting food and medicines to the 1.5 million most vulnerable? Banana flavoured angel delight is great probably, but unlikely to sustain intelligent life.

We with dementia, often living other conditions like heart disease, high blood pressure, diabetes, what are we going to do? What will happen to us, as those around us carry the virus towards us. Others may well survive, even hardly notice it, but many of us will have to continue this isolation until a vaccine is available. That is at least a year away, in sufficient quantities.

It is gratifying to know that fertility services are getting going again, and then cancer. But what does the future hold for us?

What I worry about is that we will be forgotten, because we have to stay behind closed doors, away from friends and family, away from shops, away from the life affirming places we love, like the sea and the lakes and the hills.

Because for us it is life or death.

Keir Starmer, bless him, is beginning at last to turn the screws on the lack of decision and compassion of our shambolically amateur government. Boris has started to retreat. PMQs may break him, since he cannot stand up to a forensic, legal interrogation.

Politics aside, all I want is decisions and actions that are for the many not the few. Or, better, for all of us.

My friends and I have been working for years to get dementia on the agenda, in the open, and addressed in a meaningful, compassionate way.

I fear we will again disappear and be left to our own devices as big V sweeps us either under the carpet or under the ground.

Watching time

I have taken off my watch.

When I was 16 dad bought me a wristwatch for my birthday.

I have been trawling to remember the brand, but it was, of course, Swiss made, and may have been from an H Samuel shop. Not Omega or Tissot…just can’t get it…

It showed the date. Oh my, how fine. And how proud I was to wear it.

That lasted until around when my father died, in 1992. 25 years showing me when I was in the world.

Then I actually started wearing one of dad’s old watches. He had spoiled himself with a Rolex Oyster when I was probably about eight. Then that was stolen, along with almost everything of value in our house, so he tried a Tudor. Self winder. It only stopped once, when dad had a slipped disc and lay in agony in hospital for days.

When I was 50 my wife bought me a Tag Heuer. Ooh. Yes, I did want one. It was the least expensive model, but just brilliant. Not too showy, but noticeably Tag.

And I still wear it.

Until last month.

Why do I need to have a watch on my wrist now?

Why do I need to know the time at a glance?

There’s no train to catch. No meeting to get to.

No cricket to check. No hospital appointment to attend.

In fact, time has become just a slow watery flow that gently meanders towards the sea

Never ending, never changing

I see time slipping away, I feel time slipping away

I see nature change, seasons move, birds arriving, nesting, leaving

But I don’t need to know that it is 10.58, or 2.14.

At night I see the time illuminated beside me, 1.08, 2.10, 3,06, 4.20, 8,47

This time of gentle slow living, of looking more closely at the natural world, listening, smelling, touching…this time is like childhood.

I remember the walks from Abergavenny up the Sugar Loaf, through St Mary’s Vale

Stopping for lunch under our favourite beech tree on the side of the hill.

The smell of bracken broken as we step through it

An adder, coiled silently where I was about to step

A family of grass snakes sliding off the towpath into the canal nearby, swimming in the sunny water as we walk carefully by

Even a slow worm on a dry hot bank on the lane down to the River Usk, where we would paddle between sandwiches and squash

My walks with Lupin through my local little woods and fields here take me back there, and I know that time does not matter, or, anyway, has slipped away.

But my memories of safe, happy, childhood in Abergavenny with my lovely Welsh granny are still here.

So who needs to know the time?

I deeply hope that we will all continue to live slowly when we are unlocked. That everyone will simply do what they have to when it suits them, not when a clock says “Work!” or “Go home!”

Staggered starts at work. Why ever not? And when you arrive, not when you are told to arrive.

Allow people choice and responsibility, and to enjoy their lives more.

Of course we will need timetables for trains and planes and buses.

Of course we will schedule meetings.

Schools will cling to timing as if its a life raft to prevent chaos.

But let’s just relax a bit, and remember that amongst what we all know to be essential there are many things that are just simply not time sensitive, if we allow them not to be.

The graveyards are full of people who thought they were different and important and indispensable.

Time is like that. A few minutes here, an hour there…

We try to use time to make our lives more meaningful. A full diary, we proudly say.

Got to start on time, we are told. Why? So we know our place in the hierarchy.

Well something dementia teaches you is that time is running out and you remember less and less of where it has gone.

You need to think back to earlier years, to memories of happiness and warmth and safety.

And to get on and live as ever you choose.

Carpe Diem!

Silent Spring

My penny has just dropped.

I get it. I understand.

The world has stopped and I love it.

Yesterday I was asked to do an interview for a radio 4 programme. About the effects of the lockdown on people living with or caring for dementia.

And I said I am enjoying it.

Pardon. Er, why?

Well, because I am not constantly annoyed about the CCGs and others refusing to either listen, engage or act to improve dementia services. And planning my strategy. Writing another letter, another FOI. It’s been a pain in my brain for nearly ten years.

And now it has gone.

And that, folks, is such welcome relief I am happy.

But this morning I have just realised another, even more important and revolutionary benefit…

No noise.

It is quiet out there. It is silent, but for the singing of birds, branches rustling, leaves fluttering, a distant train hooting once a day.

And that, my friends, is an enormous win for me. That is why I am enjoying my days of isolation here. I am not overwhelmed by the noises of busy living.

The trains, and stations.

The cars and motorbikes screaming, police klaxons, airplane thundering.

People talking too fast and loud. Or not loud enough to hear clearly.

The work we put in in order to deal with, to process and understand and respond to, all this cacophony, is enormous.

So, silent spring, welcome. I love you.

Of course, there is a flip side.

There’s always a pay off.

When, how, will we get dementia back on everyone’s commissioning agendas?

For the moment, Big V is THE only issue. The only show. And rightly so.

But…as ever…but…why is dementia not one of the criteria for exceptional support? For special shopping times or queues? For food deliveries?

Those living alone with dementia will be finding getting food and meds difficult. It’s all very well advising home deliveries, but you can forget the big supermarkets. Their slots are gone by 2 minutes past midnight. And that presumes you have smart tech. And can use it for shopping.

I know there are many wonderful support groups springing up, and shops are delivering locally. And I’m pretty sure many who live with dementia in towns, or perhaps tiny villages, will have neighbours who will help.

But remember, many with a diagnosis do what? They withdraw. They lose confidence, self esteem, sense of value. They stay at home, hidden away.

Who will help them?

We are living in a world of exceptional contrasts, extremes.

I am enjoying this silence. Many are not…they will be alone, staring at walls, unable to get the food they enjoy, wander around, maybe see familiar faces passing their windows.

And many will not understand why. They will not remember why.

It must be a difficult time for those in more advanced stages of dementia than me.

The BBC person said, gently, you don’t sound, the way you’re talking, as if you are very affected by your dementia. I mean, I know you’ve got it, but…

Well, I said, if I were not taking my pills I would be unable to put a sentence together, or do much else.

I explained a few of the difficulties I have, which are pretty minor on their own, but which together have changed my life.

Ah. I see.

You can hear, these days, the pennies that drop gently into the ponds and send out ripples.

Rachel Carson may have died, but this silent spring is for me a welcome change.

We have fewer birds and insects, fewer ‘weeds’, and that is shameful, but the world learned from her work.

Let us hope the world learns from this year’s silent spring to value quiet, slow living again.