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.

The poetry of zoom

Today I took part in two ZOOM meetings with friends from the DEEP underworld. Loads of stuff came up, sad and bad, so I have tried to combine them into a poem. Not a great piece of literature, but some thoughts.

Let us sit on the ground and talk of the deaths of friends

While we knit square huggings for those we miss

And mourn those who find they cannot go on.

We meet by courtesy of some foreign land

We inhabit nowhere we know

We are shadows trying to avoid the darkness

Of closed doors and lost touch

We learn to cook and carve new things

To paint the faces of people we miss

We say hello to Siri

And goodnight to Alexa

Our lives are jigsaws

Put away for these dark days when

We have to construct the light

That illuminates our days

We piece each day together

Tell jokes, play songs

Plant seeds, take our walks

And forget the darkness elsewhere.

Because we are not there.

We cannot be everywhere, just here

Here and now, keeping our balance

Listening, talking, sharing, scaring

Occasionally, for good measure

Our poems cheer us into another round of greetings

Anon and his gentil cock

Wordsworth on London Bridge

Sumer is icumen in

But for now we lie, half awake, half dreaming

Waiting to see if our clock is about to stop

Waiting for the warming sun to rise on us again

Waiting to pass into a new land

The same but profoundly different

Less Better Dementia Care in Herefordshire

I’ve just heard confirmation that an Admiral Nurse (AN) service has closed in a West Midlands county. It’s been going and growing for two years, and now, before big V came along, funding has been withdrawn from their local Better Care Fund.

Otherwise known as money taken from social and health care to develop ‘better care’!

Controlled by? CCG and Council, or possibly an integrated care system (ICS).

I was contacted a couple of months ago by someone who was benefitting from the AN service there, and who had to put me right about expanding services. Theirs was closing.

Why do Admiral Nurses matter?

Because they provide the expertise in psychosocial care and support to keep families and care partners going through critically difficult times.

And no one else does.

They take over the myriad challenges that carers face, like having 20+ organisations and phone numbers for arranging care and getting advice.

Like helping those affected to understand what is going on and why.

They get things done! Yes, I said it. They get things done.

Dementia UK (who train Admiral Nurses) have collected evidence that shows that an Admiral Nurse service saves the local health economy around twice the cost of the service.

And that does not include the reduced mental ill health stress caused by crisis to dementia carers.

They help family members and they help neighbours and other friends who are providing support and care. (Don’t forget that 30% of people living with dementia live alone.)

I have heard many stories of abject, horrifying crisis for carers who get to the end of being able to cope.

And yet, and yet…

Admiral Nurses are not mandated as a service that all people affected by dementia should have access to.

CCGs choose whether to fund them. And whether to fund other services that support people affected by dementia.

They do this often not on the basis of cost benefit, or indeed compassion, but whether they can spare money from their historically commissioned services.

It is not my job to advise which services are good value for money. It’s theirs, the commissioners. And they are paid well to do it. No one forced them to take the job.

It is not my role to say that one service is more worthwhile than another. IVF? Transplants? Hip and knee operations? Steroid injections?

That is their job. So I ask…please will they do it.

I do not expect any progress with dementia care during the Big V, but we will come out of this phase, even if we have to live with Covid19 and vaccinate each year.

I do expect progress next year with providing good, appropriate care and support for the million people living with dementia, and the half million providing unpaid care.

This is a crisis. Just as much as the Big V is.

The Big V will recede. Dementia will not.

Don’t forget the Admiral Nurse Dementia Helpline…for anyone anywhere in UK

0800 888 6678

Zooming Blooming Chaos

We look so ordinary. So normal. Siting at our desks or reclining graciously on or in our beds.

You see little pictures on the screen and the green box illuminates around a speaker. The host invites you to contribute and you unmute. If you remember.

Then…as you wait for a fluent stream of words, and wait, and hope, and pray that the words will come for the struggling thinker you can see…then you remember that a diseased brain is invisible.

You meet new people on ZOOM, people who have dementia and who look just like anyone looks, of course. But ZOOM catches them out, because suddenly they are ‘on camera’, with the red record button glaring at them, and a dozen or more people listening for their pearls of wisdom, and sentences, and ideas…and…and…

Nothing. Or a hesitant phrase or two.

It really is challenging.

If you have something to say, a fleeting thought flits in and you need to get it said…and then it drifts away again. You try to get it back, to find it amongst the crowd of odds and ends and tadpoles that swim around…you go back to something you remember being said, and retrace the path from those words, hoping the trail will reappear and lead you back to that flitting, fanciful idea you had, but have lost again…

(What is the collective name for tadpoles? A mess of tadpoles?)

And all the time the camera stares at you, and you colour up, that tingle of sweat arrives, you start to wonder about what others think of your inability to get the words out, and…

You give up and mute yourself again. And probably you don’t try to say anything else.

You watch and listen and think of past times, good times, times when you could hold a room, an audience, a meeting…

But they are gone.

You are still the same person, but let’s not pretend that any of us can do the same as during our working lives. As another zoomette friend said today, we move into a new world, into new lives, as we join DEEP groups and meetings. Friends who get it. Away from care partners who are tired. Away from long years of patterns that may have become stale, or just habitual.

But…

ZOOM has two sides, like Janus. One is positive, fun and useful. One is negatively awful, dark and lost.

Which side will come up today at the toss of the coin?

One day a friend is giggling and joking and expansive…another, she is lost, eyes closed, hesitant and reluctant. She disappears from the screen, and I know she has retired to a quiet, restful place, to regain composure and peace of mind.

I have become intolerant of meetings that lose my interest. And the same happens on ZOOMs.

Watching a film in a cinema, that thing we used to do once upon a time, looking at your watch is a sure sign of second rateness. B listing.

The same happens to me during ZOOMies. At a certain point I wonder what’s on my whatsapp. Or check email. Or check the time. And that’s when I either send a message about a new subject and try to lead it elsewhere, or I give up in my mind.

I’m sure I am not alone in this.

I also find meetings of more than nine ZOOMers impossible to follow easily, or at all. They don’t all fit one ipad page! So people can speak and I don’t know who they are, and I lack the contextual knowledge of what I might expect from them. As important as facial expressions.

Everything said has a context, a history, an underlying attitude. When I studied English Literature at university I really didn’t get structuralism and marxist analysis. I think I do now.

(If only I could be young again…)

So lacking the underlying context and attitude prevents understanding and emotional empathy…these are rarely virtual!

Virtual meetings are amazing and becoming part of life. Great for contact. And ideas. But in these days of sunlit darkness I miss the face to face chat and joke and satire and irony and rudeness and general chaos of our usual, less frequent real meetings.

There are others, bless you, who love this chaos. It shows through. And long may it.

Chaos. Disruption. Wonderful.

Of course I like the seriousness of discussing subjects that matter. But…

I am truly tired of seriousness about subjects that I cannot change or influence.

For the many not the few

It seems to me that we have the real possibility that thinking about economy, entrepreneurship, health provision and government may soon change.

We have a health provider system that is based on the belief that humans only act out of self interest and the desire to have more (money, possessions , comfort, security, health) than others. It is concocted out of a cocktail of laissez faire, profit seeking, artificial markets, and political self interest.

We have an economy modelled for the benefit of those who can, at the expense of those who cannot.

We have an approach to public health based on spending as little as possible from the centre, and hoping (and nudging) that people will have the good sense and ability to make healthy decisions.

And we have government which for centuries has predominantly been by the rich for the rich.

This may change.

We are seeing growing awareness that our NHS has been so chronically under resourced that it is stretched to breaking point, and some other countries are doing better. And we are the people who are dying from this under resourcing. There are not enough critical care beds and equipment. Not enough staff. Our system is funded almost the lowest per head in Europe. That is not a coincidence.

Our doctors are making increasing decisions about who to treat and who to allow to die. Sometimes because dying is less cruel than attempting to save. Sometimes because there are no ventilators or beds.

No one could have know CVID would appear. But every government has a risk register, and emergency stores, for when pandemics strike. Ours, it seems, like the USA, chose to reduce costs in recent years and reduced our stores of emergency stuff.

In January, when the big V appeared and was belatedly confirmed in China, some countries and scientists started work. We did not. As with other decisions, our government took the view that they would see what happened, and was always just behind the action curve. When they realised that the economy would be shattered by what was coming they acted, though for many with loans rather than grants. Once again, it was the economy that drive the decisions to act, not the science or compassion.

We have a mindset in our society that sees everything as profit or loss, income or cost. An attitude to borrowing by government that works for individuals but is inappropriate (and historically inaccurate) for governments. As Will Hutton often has written, governments borrow. That is what they are for. They borrow to make things happen. To invest. For us. And, now, to bail out those in need.

I pray that this change in attitude and action will last into the post virus future.

We must not revert to Osbornonomics. He said yesterday that the UK could only spend now because ‘they’ fixed the roof after 2008.

Well, er, no. They actually removed the walls, the pillars, so the roof had only one way to go.

They actually enabled rich to get richer, while poor got poorer. They destroyed the NHS and social care. They removed safety nets. In the pursuit of profit and riches.

Let us hope that the old Etonian, if and when he comes off a ventilator, has a Pauline (or possibly near death?) conversion and sees a new future for our country. A new Jerusalem. A fair, just society, in which we pursue happiness for the many not the few.