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!