Monday, 26 December 2016

Poem - Waiting


I stand in a threshold place.
Lingering in shadow, I wait.
That door ajar is not for me.
I accompany another.
She, too, waits. 
This is not a place for the living,
But I am steeped in it.
From under this ancient arch,
Beside the waiting door,
I look back towards that other world -
Of flesh and blood.
They are all going places,
Wanting things, seized by
The drama of their moments.

They talk to me as though I am with them there.
But I am here,
Looking at them but
Carrying the shadow of this place

Deep in my bones. 

Dying in the modern age.

We’ve all heard horror stories about people who’ve been left to die in hospitals, without even water. There’s even a (now discredited) system, called The Liverpool Care Pathway for the Dying Patient (LCP), where hospitals seem to be trying to hasten the deaths of patients who are deemed to be terminal.
To be honest - I know of two people – one a relative - who chose to refuse food and drink because they felt it was their time to go. And a long and distressing way it is to go. I have already started to make plans about hiding paracetamols where I can get at them when I feel it’s my time. Preferably washed down with a large gin and tonic.

But my experiences over the past few weeks, ever since my mother went to see her chest specialist for a routine check-up, which led to her being referred to the Palliative Care Unit, have given me a whole new insight into the 21st century way of death.
As my purpose in writing this blog is to be helpful to anyone else who may be in the same situation as me, I’m going to go into details here.

Once you’re under the Palliative Care system, all sorts of things seem to come into place, so I now feel quite supported and have a clearer idea of how to do the next phase of my mother’s life.
Because she now is into the final stage. It may go on for a long time – possibly another year, but there has been a step change in her condition, and I am now undoubtedly living with someone who is dying.

Lots of things have happened very fast. A man just turned up with an oxygen condenser, and quickly got Mum set up with oxygen being very gently pumped into her nose. So - no lighted candles when the vicar came round the following day to do communion.

Then we had a visit from the Palliative Care Team, (actually McMillan Nurses, who now do all P.C. I didn’t know that) who went through a whole list of questions, including difficult questions about end-of-life care.

We know we want Mum to stay at home as far as possible. Mum’s wish is to die quietly in her own home, not to go to hospital if at all possible. We now know that if she does require hospital admission, then it will be a Hospice rather than a General Hospital, which is a much quieter and nicer place. But that will only happen when there is clearly some treatment that would benefit her that cannot be done at home - such as anything intravenous.
But then they ask her ‘Do you want to be resuscitated?’
So - this is where I find out that if you die, they don’t just leave you dead, they do CPR on you and bring you back – as a default. They have to have a legal form called Do Not Attempt Cardio-Pulmonary Resuscitation order (DNACPR), aka a purple form. Apparently it’s that colour so it’s unmistakable to any medical personnel who turn up at the house.
You get it from your GP, if the patient agrees to it.
Mum just didn’t have a clear answer. She said ‘Well, theoretically, no, but I don’t know how I’ll feel about it at the time.’
It was hard for the PC team person to be too brutally direct with her, and Mum kept falling asleep while the woman was trying to discuss this with her. On her way out I had a discussion with this woman, who said that if it was her she'd be able to make the decision not to do CPR, but the younger ones are so scared of litigation, they will resuscitate - even with someone like her, unless they have this purple form.
If she has to go to hospital with pneumonia and dies while she's on a heart monitor, unless they have this form in the system on Mum’s notes, the crash team will rush in and pump on her chest and shock her and get her back to life, and then she'll still have pneumonia, but she’ll be semi-conscious with broken ribs, and she’ll just linger on, in pain and still very ill, and it will be utterly ghastly - then she'll have to die again.
This is the main reason to keep her out of hospital - which she agrees with.
Even if she dies here in the house, which is what we would all like - they may insist on trying CPR unless there is a purple form in the house which is recognized by para medics and anyone else as legally allowing them not to resuscitate her.
The prospect is utterly ghastly. As far as I am concerned there is no fucking way I am going to let them resuscitate her and then let her linger in a limbo state till she dies anyway. And how many times would you have to die before they finally let you stay dead? Obviously if she’s responding to treatment and there is a chance of her making a recovery, then it’s not an issue. But once her heart stops, even if she had seemed to be getting a bit better, I think that should be it.

I’ve spoken to friends who’ve told me they had very different experiences with parents dying, but when I ran it past the lovely, very good, GP, she said my take on it was substantially correct.  Even if quite a bit of time had passed between Mum dying at home and paramedics arriving, which would surely be around 20-30 minutes even if I was sitting by Mother at the moment of her death, and longer if I'm out of the room at the time of death, the GP said they may still try CPR on her.

This is all a very far cry from when my husband died in 1984. He just told them verbally that he didn’t want any further treatment and would stay at home till he died there. When he died there was no question of resuscitating him, it would have been pointless anyway, but he didn’t have to sign a document stating that he would not sue them if they didn’t resuscitate him.
FFS! The whole thing is a travesty now. 

So - I’ve very gently found the right way and right time to go over this again with Mum. I had to think carefully about when she was most likely to be awake enough to deal with it, as she sleeps all the time now. I chose to do it while I was giving her a bed bath, first thing in the morning – as she is quite alert then and it’s a very intimate and tender time, with no loud music playing.
I was worried that she didn’t get what the question was about, and rehearsed it over and over in my mind to find the best way to tell her. But in the end she just said, straightforwardly, “I have been thinking about it, even before that woman came, and I think it is the best thing not to be resuscitated. It’s just that it’s scary to think of. I know I have to go sometime, and I do accept it, but when I really think about it, I’m scared.”   My eyes filled with tears.
When I did tell her briefly, that they would do CPR on her even if she’d died in a nice gentle way at home just as she hoped for, then she was quite clear it was right for her to get that form. 

Over the years I’ve had friends suggest I get Mother to make out a Living Will, when it was clearly not appropriate to push her into this conversation before she was ready. They seemed to think I should just insist on this. To which my response is - Go get yourself a Living Will if you are ready to think of this. Leave others to decide when they are ready in their own time.

One of my brothers decided he’d just sit down and talk this over with Mum a couple of years ago, and he came back and told me it had all been settled.  When I checked with Mum she had no idea that was what the conversation was about.  So my next piece of advice is to talk about it more than once. Don’t assume you are both talking about the same thing. Be patient. And be sensitive.

On a different note – they are going to send out an Occupational Therapist to see Mum and assess if there is any kind of transfer aid that can be used to get Mum from chair to wheelchair/commode/bed. At the moment the carers and I are coping, but when Mum gets weaker they won’t allow the carers to help her as they are not allowed to do lifting, only assist to stand.  Once the carers can no longer come I will be restricted to the house most of the time, and no longer be able to take whole days off to have a break. I know from past experience this will push me to the limits and will be unsustainable for a longer period, so I am desperately hoping there will be something that can help. One of the carers tells me there is something but it’s nearly £3000, so is very hard to get one given to you by the NHS. I’m waiting to see what they can offer. 

Wednesday, 12 October 2016

Lovely poem by Rob Cullen that will appear in his next collection 'Time to Heal'

Keeping my word.
Your back was turned as you lay
In the bed in the stink of that ward
But it was the way you raised your hand
Waving without looking that was so telling
It was as if you didn’t want to see
My leaving you in that dreadful place.
I was certain at that moment
That you’d given up on your life
And I wouldn’t see you again
At that last leaving I hesitated
And thought about going back
But what in the world would I do
Or what could I say. I could try
Urging you as I’d done before
So many times to fight and get well
So that we could bring you home.
But I knew nothing I could do
Would change anything at all
I’d kept my promise to my father
To look after you when he was gone
Nine years of seeing to your needs
Daily phone calls, weekend meals
There was nothing else to be done
I am after all my mother’s son.
The phone rang in the darkness
I picked up the receiver knowing
What would be said a strangers voice
Telling me of my mother’s passing.
I did what my father had asked
And looked after you for nine years
But it hurts that lingering thought
Somehow, in some way, I had failed you.

Wednesday, 5 October 2016

5th October: caring for my Mother

Mum says “Sorry to be taking so long over this.”

I ask “What?”

I am helping her undress on the bed ready for the night. Did she mean being slow with bedpan, hand wash, eye drops?

“No,” she says. “This.”   She gestures with her head. “Dying.”

I pause in order to feel the right response. “Be true,” I think to myself.

“Are you afraid?”

“No. Not really. Just. I’m keeping you from getting on with your life.”

I wonder if she’d understand what I’ve come to understand.

Getting on with my life is happening, right under our noses. Inside, where it matters.

Growing. Becoming. Being.

It’s what we all do.

While we think we are waiting for it to start, it’s already chugging ahead. 

Later I write this poem, inspired by a book I read on quantum physics:

I am living in a field of death.
No asphodels or grim shades grieving.
This is light
Dissolving into light.

We now know that all
Is everywhere
For all time.
That we are each a
Distillation of light
And breath. A drop
Of nectar quivering
For a moment
On the skin of a petal.

Thursday, 22 September 2016

More on misophonia

Since I discovered misophonia yesterday, I’ve had a few responses to my blog, (mostly on Facebook) and I’ve been looking at what people say on a Facebook group for misophonia (they call it ‘miso’ but I can’t. Miso is a Japanese food  )

I’ve had a few more thoughts.

Firstly: it seems there’s quite a range of neurologically atypical sensory responses that have been researched and named, including one that seems to be almost exactly the mirror image of misophonia, where people experience intense pleasurable sensations in response to certain sounds, like eating.
For me - the key characteristic of misophonia is the powerful emotional reaction that seems to have nothing to do with the stimulus - ie- feeling angry because of very specific sounds that some people make when eating. I began to wonder if it's actually a form of synaesthesia, which is when you get 2 very different sensory reactions to a sensory stimulus - like, seeing letters or words as colours. In this case, it's linking a particular feeling- anger- with a sensory stimulus - sound of eating (or whatever). So I found an article about synaesthesia which lists misophonia as a possible form of that.
That makes sense to me. My problem that certain eating-sounds trigger anger in me is troubling in itself. I’m usually very in touch with my feelings and I’m used to knowing why I feel something. I expect my feelings to make sense, and feeling random anger that switches on and off like a tap, is disturbing. Hence my sense of relief at discovering an explanation for it.

Secondly:  A couple of lovely and dear friends have suggested they will alter their behaviour when we eat together in the future. I do really want to state that I feel this is my problem and it’s my responsibility to deal with it. I do not have the right to ask anyone else to alter the way they eat. I have never actually said anything to my mother about her eating style, even though I have witnessed (back in the day when she was mobile and visiting with friends or relatives) eyes swivelling to her when she was chewing. So her eating is loud enough to draw attention, even from people who aren’t bothered by it. But it’s her body and she has a right to do with it what she likes. And she can’t help her breathing which is caused by her COPD.
I have a dear brother who suffers from a painful condition where he gets polyps growing in his sinuses and when he eats his breathing is very audible. Actually, oddly, this does not bother me as much as some other eating sounds, but it is moderately hard. He can’t help this and I’d never make him feel bad about it. He actually suffers a lot of pain from his condition, so he is the one who deserves sympathy.
I have been stoically bearing this distress for over 60 years, (apparently most people don’t start misophonia till they’re older) and I know what I can cope with and what I can’t. Even when that partner I mentioned, started to eat sweets deliberately in my ear, I did not break up with her because of the sounds she was making – it was her deliberate attempt to distress me that made me lose all respect for her.  

So please do not think you have to leave the room or anything else when eating with me. It’s actually more distressing to think that people are reacting like that to my confession, than to have to put up with the occasional munch. As I said in my article, I seem to get more tuned in and sensitive the more time I spend hearing the sound, so most people aren’t at that stage with me yet anyway.

I do however, give myself the right not to stay with anyone who eats in a really loud and offensive way. But I will find my own way to deal with that if it arises. Anyone who eats in a normal well-mannered way with me is safe. 

Wednesday, 21 September 2016

Caring for my mother and misophonia: This is the most important thing I’ve read in my life

Misophonia: This is the most important thing I’ve read in my life

Years ago I chanced upon an article about synaesthesia, in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway. The most common form of it is where letters or numbers are perceived as inherently coloured. So I discovered a) that not all people see numbers and letters as colours, and b) once I began to pay attention to this,   I realized there were all sorts of other ways in which I was synaesthetic – such as experiencing numbers as 3 dimensional objects with colour, texture and movement. No wonder I struggled with doing even the simplest arithmetic.

A few years later I read the very excellent books of Dorothy Rowe, with her descriptions of Introversion and Extroversion, and began to form a more positive self-concept of myself as an introvert – and hence– well, basically a super-cool person – heheh.  
Here’s a bit of basic info about this that I just cut and pasted from a website, for those who don’t already know it: “Psychologist Dorothy Rowe, author of The Successful Self, explains: ‘Either we are “people persons”, who judge ourselves in terms of how others respond to us, or we are “what have I achieved today?” people.’
These definitions have been widely used by psychologists ever since, as a way of dividing personality types. One of the most popular assessments, the Myers-Briggs personality test, considers extroversion and introversion in terms of where an individual gets his or her energy from. According to this approach, an extrovert tends to draw energy from interactions with other people, while an introvert is more self-sufficient, drawing on his or her internal world.

The next useful bit of insight for why I am so weird and always feel I don’t fit it came from reading Elaine Aron's 1996 book The Highly Sensitive Person, which I have already written about in this blog.

So, that’s enough for one person, isn’t it?  Highly sensitive, introvert and synaesthetic.
But there’s one other totally weird, off-the-scale bonkers thing about me that I have lived with all my life and thought was unique and inexplicable. No-one else in the world was like me. I have spent years trying to find some kind of explanation for it, even considered having hypnosis to help me with it.  And now, today - by pure chance – I came across an article giving it a name: misophonia.
Sometimes called selective sound sensitivity syndrome, misophonia is a baffling and bizarre disorder. Sufferers feel an instantaneous, overwhelming rage - often accompanied by physiological responses such as sweaty palms or a racing heart — to certain sounds.
These triggers are often chewing and eating sounds, sometimes barely audible. Some people report visual triggers such as fidgeting or foot-bobbing, or even olfactory or tactile triggers.
Here’s the article I stumbled across:    

The first time I ever noticed I didn’t like the noises people make while eating, I was literally about 2 and a half years old. I still remember the moment. We were still living in Alberta, Canada, where I was born, and my 2 older brothers had gone outside into the back yard to play, my younger brother had been put down for a nap, as he was still a baby, and I was enjoying a moment of quiet with my Mum, sitting at the dining table, after lunch. Mum was reading a book, and I was musing in my quiet, odd way over important questions like “If I shout really, really loud, then stand very, very quiet, will I be able to hear the sound come all the way back round the world to me again?” And “Why did the clock stop, never to go again, when the old man died?”
(I’m not making that up. I remember this so vividly I can even remember what I was thinking at the time, and I did tell you I was weird – or at least, an unusual child)

Then, my mother started to eat some grapes.

Now - I do have to say, in mitigation, m’lud, that my mother has believed for her whole adult  life that every mouthful must be chewed a minimum of 37 times. Not 36 and not 38. 37. And in order to achieve this totally unnatural way of masticating, it is necessary to push the food back to the front of the mouth once it has been chewed the normal number of times, say 15 or 16, and re-chew it. So, even if you are not misophonic, this is not actually a very agreeable thing to listen to.  But that does not really explain my reaction. It was like having the inside of my skin sandpapered.  It was really annoying. I commented on it to Mum by saying “You make lots of noises when you eat those grapes, Mummy.” To which my mother responded by laughing and popping another grape in her mouth.  I distinctly recall that it took 3 grapes and I was out of there. I was so small I had to ask Mum to get me down from the table.

Since then, I’ve just had to learn to live with it. I’m usually ok if there is plenty of background noise. Partners are simply informed - not asked, told - that I will never eat a meal in a silent room with them. TV, radio, buzz of background chatter, all help to mask the noise. I had one partner who actually deliberately set out to annoy me by insisting we turn off the telly, then opening a bag of sweets to start slowly chewing on them while she sat right next to me on the sofa. Relationship didn’t last long after that.  At one time I was married to a person of the male persuasion who used to eat just like my Mum – he would chew even ice-cream, or porridge, for 37 times, AND clonk his teeth together while he did it. 

What I noticed about that was that mostly it doesn’t bother me at first, providing people are reasonably normal in their eating habits, but the better I get to know the person, the more tuned into it I become, and the harder it is for me to cope with it – because I can’t screen it out of my awareness. As I’ve known my mother all my life, she could be chewing with a DC10 revving up in the background, and I’d still be able to hear her.

So, as a family, we’d all be sitting at the meal-table and every time Mum started to chew a new mouthful I’d get this surge of anger. It freaked me out really. I mean, disgust and irritation at the bad manners of someone who can’t keep their lips together while they chew, yes – but anger? It would just come and go while she was chewing, switching on and off like a tap.

I’ve even tried some kind of psychological explanation – like -  Mum started that slow eating thing, and clonking her teeth together, as a form of dumb insolence when she was a teenager, because of the way she was silenced in her own family, and the anger is still there, and as I am an empath, I’m just picking up on that. I still think there may be something in my theory about her doing it as a reaction to her own family dynamics, especially as the teeth clonking is akin to teeth grinding during sleep, which is definitely associated with anger. But I was only 2 years old when I first had this reaction! Sensitive and too perceptive for my years, yes, but at 2 years old you believe everything your mother does is good and nice – you don’t start getting angry because of the noises she makes when she eats. You’re more likely to just eat the same way.

Since I moved in with Mum she has stopped clonking her teeth while eating, so at least that is not so bad, but she's added in  a whole range of other sounds that drive me crazy to do with her breathing. At first, when she was still mobile, I decided the only way I could survive meals was to eat my food as fast as I could and leave the table. I know Mum thinks this is bad manners, but it’s what I need to do. I’d shoot into the kitchen and start to wash up. Now I’ve been doing this for so long, I’ve forgotten how to eat at a normal speed.  

But now Mum is making noises all the time because of her breathing problems. She fills up with mucous towards the end of the day and makes this kind of continuous throat-clearing sound. And she kind of smacks her lips in what I can only describe as a wet Velcro type of sound, because her mouth is so dry. Even when she’s not doing that there is this kind of gravelly breathing sound. She can’t help it of course. But I also can’t help the way I react to it. It’s a physical reaction. I’d really love to be able to just sit with her in the evenings, but I simply can’t do it.
Reading this article, I did just sit and cry.   I never did that about the HSP thing, or the introvert thing or the synaesthesia thing. But this just got to me. It was the thing about the anger, really. I’m not an angry person. I hate being angry. I freak myself out with that. Reading this, I realize that I am not alone in this. My anger is just a physiological reaction and not a judgement on my mother. It’s not even really anger, in any real sense.

And of course. I never act out on it.

It’s my problem and it’s up to me to find my own solutions, as I have done.  I have kept silent about my distress all my life, apart from to a few close friends, and family. I know I can keep coping. But having a name for it and knowing it’s a recognized phenomenon, even though it has no cure or anything, makes it just that little bit easier. 

Friday, 9 September 2016

Naomi Klein, Paul Mason and Jeremy Corbyn v a return to feudalism.

 9th Sept 2016 

Years ago I borrowed a book from my local library called ‘The Shock Doctrine’ by Naomi Klein.
It scared the bejazus out of me.
Last year I decided I needed my own copy, so got one, but it’s taken me till now to pluck up the courage to read it again. I’m only half way through the first chapter and already I’m fighting the urge to curl up foetally under the bed.
This time I’m reading it after reading Paul Mason’s ‘Post-Capitalism’.
But, where Mason ends on an optimistic note, looking at the possibilities in moving beyond capitalism to the time when almost everything can be produced with hardly any work, using technology already in existence, I am looking at a world where the real powers, the super-rich owners of multi-national corporations, have already seen this future and have begun to seize control of assets that so far have always been free – such as water – in order to consolidate their power over the population of the whole Earth.
Let that sink in.
It’s never been about money.
Money is only a means to an end – and the end is power.
Paul Mason, these guys get it! They probably got it before you wrote ‘Post Capitalism’. They are preparing for the post-capitalist world while we are still dazed and bewildered at the crumbling of capitalism around us.

This is what ‘The Shock Doctrine’ is about. It describes the conscious policy of exploiting every single natural or man-made disaster, to make a clean sweep of whatever social institutions or property rights were in place, so that every single thing can be replaced by a for-profit business that dispossesses the mass population while corporations move in and take over.
So - a hurricane destroys New Orleans? Bulldoze all their state schools and replace them with privately-run charter schools. A tsunami hits Sri Lanka? Bulldoze hundreds of fishing villages and replace with high-rise hotels for tourists.  Terrorists destroy the World Trade building? Use it as an excuse to invade Iraq, a country that had nothing to do with the attack, and destroy very hospital, school and police force in the country, prioritize that over military targets, then offer to replace them with for-profit-run businesses owned by US companies.  Not to mention the vast fortunes to be made by weapons manufacturers and so-called security firms.

Shock Doctrine was written before the banking crash in 2009. But there again was a perfect example of how to take advantage of a crisis that swept away peoples’ livelihoods just as completely as the tsunami and left people too bewildered to plan for their futures.

Enter austerity. 
The exact same economic plan that had already been imposed on countries in South America, many parts of Africa and the Far East, destroying their democracies and economies, and reducing people to frightened and obedient chattels.  

In the US we see a booming business in privately owned prisons, where the black population is incarcerated and made to work for nothing, producing commodities that used to be made in factories by ordinary folk who had jobs. The re-enslavement of the black population.

It’s a little harder in the UK. It’s mainly the white working class who have lost out, so a little finesse is required.  Zero hours contracts, the gig economy, split the working classes along race and geography, feed them childish stories about immigrants taking their jobs, when it’s the corporations that have taken them. All in the name of the free market ideology.

Make no mistake - this free marketism will be enforced by violence where they can get away with it. Any kind of organised resistance – Trades Unions, legislatures, and laws like the Human Rights Act, the European Union, the democratic voting system, the free Press – whatever - will be destroyed.   
It might not be the systematic violence of Pinochet’s Chile but the aim is the same. To make us all too frightened to resist. We see it here in the draconian changes to our welfare system.

All of these measures actually destroy the economy. Capitalism doesn’t really work when too many people, globally, are too poor to be able to afford to buy any of the so-cheaply manufactured goods using slave labour. The system relies on enough people having enough money to keep it going.
But that doesn’t matter.
It’s not money that matters, it’s power.
Those who are running this show will be quite happy with some kind of technologically-based feudalism – as long as they are on top.
Which is where they are making sure they will be.
Destroying capitalism would just be the final coup, after which they’d be able to take off the gloves and come out from behind the screens from where they’ve been pulling the strings of their puppet governments all this time., and show who’s really boss.
And we’d probably hail them as our saviours for doing it – just as so many already are with Trump in the US.  
This whole scenario relies on producing enough shocks to the system to keep the population afraid and unable to rally any kind of resistance.

There’s been a slight glitch to this scheme though, just lately.
The shock got delivered to the wrong people.
The government that was meant to deliver austerity and keep the people under control, is now the one that’s in a state of shock. They didn’t know Brexit was part of the plan.  So Cameron and Osborne collapsed, the rest of the crew, Gove, Boris etc, have been shown for the ineffectual clowns they always were.
Our PM is still trying to stick to the script by foisting grammar schools on an unconvinced country, and they are handling the NHS takeover so badly that most people actually support the striking junior doctors.

And the biggest shock of all?
The obedient, endemically corrupt tool of big Business – The British Labour Party – has actually elected a leader who actually has a plan.
A different plan.
In the middle of the panic and disarray, Corbyn is there calmly, quietly talking about taking back the country’s infrastructure into public ownership.
Of all things!
That idea was supposed to have been well-and-truly discredited decades ago.

But don’t worry.  The LP has always obediently stepped up when its masters snap their fingers. So there they are, doing everything they can think of to get rid of that irritating nuisance who just won’t play the game.

Corbyn’s opponents will not be stopped easily. He can’t be got out of the picture as easily as the Democrats got rid of Bernie Sanders. They will still keep hammering away.

And we must not let them.
The Labour Party is OUR party.
It grew out of a labour movement that our ancestors fought and bled for.
We are not consumers, to flounce off and find another party that suits our tastes better. We have to stay and fight to return ownership of what is ours, however long it takes.

So- Heave ho! My hearties! Courage!

That picture of feudalism with technology is not just drama. It’s the reality that faces us if we let the bastards win. This isn’t about ourselves.  It’s about whether our grandchildren are going to grow up free, or as serfs.