Monday 26 December 2016

Poem - Waiting

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.
RAC

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  https://en.wikipedia.org/wiki/Miso  )

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. https://en.m.wikipedia.org/wiki/Autonomous_sensory_meridian_response
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.  



Sunday 4 September 2016

3rd September: what happened to the golden light? And: would you put your mother on one of these?

I went to see a friend and wise teacher, who is also a chiropractor (in the generic sense of hands-on manipulation of muscles and bones to help injury or pain.) I've been going to her for a couple of years because she helps with aches and pains caused by lifting Mother, and also with older, deeper emotional injuries that have been held in the body through life.  So she’s a part of my journey of discovery of my mother in me.
I told her about this golden light thing that I am experiencing around Mum just now. Her take on it was that as Mum is approaching death, she is entering into an in-between place. Whatever death is.  She is becoming more and more transparent, and as I am living close to her, I too am being drawn into this transitional, transparent place of openness. I don’t think you have to believe in an afterlife, or Spirit, or anything like that for this to happen.  I don’t know what death is, but knowing one is approaching it has to be the ultimate assay of life.  It’s a place of shedding all that is inessential down to a photon layer of self, as that self comes closer and closer to a point of not-being.
In her own way, Mum is working away there, though she is not a deeply reflective person. She dozes on her chair, mouth open, wakes and switches on the telly, listens to her music, eats her food, toddles about the room when she feels strong, breathes eggcup-full sized breaths. But underneath, I know, from the occasional comment or story, that the sifting is taking place. Drawing closer. Shedding whatever needs to go.
And I’m in there with her, though I’m still full of life and future, this side of the veil.

My practitioner tells me a story of the night her own mother died: how she phoned her and her mother said her long-dead husband was there with her and it was so exciting because she was moving house. Her mother had been utterly prosaic and unspiritual all her life, and sounded quite bonkers talking like this. But that night she died.  
I was reminded of how I sensed my grandfather around me, who I had not thought of for years, one weekend when I drove over from Wales to spend a weekend with my parents. Dad had some health problems, but nothing major, and on the visit he was just the same old infuriating Dad. Except there was something oddly different about him, something transparent, that puzzled me. One week later he died suddenly.
Of course, it would be me that picked up on that.  My grandfather came to me the moment he died, when I was still at boarding school. And there he was, coming again to me when my father – his son – died.
I drove home after the treatment, my practitioner’s words about her mother snagging me. Suddenly I feel Dad there, strongly present in the car with me.  I am spooked. I realize I’ve forgotten my mobile phone. Anything could have happened while I’ve been out.  It’s almost an hour and a half’s drive home.
When I arrive all is well. The new carer coped alright.
The humid house-smells wrap around me as I go in. Normality resumes.

After all that I was surprisingly crabby with Mum, getting irritated over petty things during the evening. At bed-time I thought “I don’t want to be snappy with her. I’d hate it if the last thing I said to her was an angry reaction to something trivial.” I resolved to watch for this too, and try to remain in the golden light.

The following day a kind of turntable thing arrived that I have ordered.  It’s a pivot transfer. The ‘patient’ stands on it then you turn them in the direction they need to go. Mum’s left leg seems to have seized up completely lately and she’s finding it hard to make that sideways turn to get from one seat to another – bed to wheelchair, chair to commode etc. Last week her legs got all tangled up with each other and she fell – not on the floor, she caught herself and went face down on her chair. I had to lift her and set her to rights on the chair. Hence my need to see the chiropractor. I’m worried about coping with this long-term. And also not all the carers are able to get Mum up to stand on days when she’s weak.
So I researched various kinds of lifting, and transfer aids and found these things. There seem to be lots of different makes of them so I assumed they must be useful, so I decided to give one a try. It was only just under £20. I hadn’t been able to find any films on YouTube of how exactly they are used, and they give few details on the websites where you can buy them. 
Well, call me stupid, but I assumed there’d be some kind of catch on it, so you could lock it while the patient gets on or off it. But no, there was nothing like that, so it swivelled as soon as you put a foot on it.  

I knew Mum was nervous at the thought of standing on anything like this, so I tried it myself, holding onto the back of a chair to simulate her walking frame.  It was clearly took a bit of a knack, but I thought it would be alright once she’d got used to it.  So I persuaded her to try it, and she put one foot on it while still sitting, felt how it swivelled and refused to go any further. Of course she couldn’t use it. It was quite unsuitable for anyone with even the slightest problem with balance. In other words, anyone who was so wobbly they’d need one of them could not possibly use one. But I became inexplicably angry with her for not trying harder. Quite unfair and my internal witness was saying “WTF?” but I couldn’t stop myself. I stormed out and slammed the door as hard as I could – something I used to do as a child.

I get that it was because I was anxious about being able to cope on my own as Mum gets weaker and weaker. But I was completely out of order. Even when I’d calmed down and acknowledged this, I still couldn’t bring myself to apologize. I was afraid Mum would take the apology with bad grace. So I sent the rest of the day being really nice, but acting as if nothing had happened. But feeling shaken and upset with myself.
What idiot designed that thing? How does anyone get any use out of them?

And what happened to the golden light? Was this reaction some kind of internal bullshit-detector restoring me homeostatically to mundane normality?  

I decide to keep the turntable and use it if and when I ever do start doing sculpture. I’ll still need to clamp it to stop it rotating while I’m hacking away.

As for helping Mum move that leg – I have perfected a method of bending down and just lightly pushing it forward, while I hold her upright against my hip.


Friday 12 August 2016

On Trotskyism and Entryists.

I thought I’d write something on a hot topic of the moment: - whether the surge of new members of the Labour Party includes extreme left, Trotskyist members of other organisations who were expelled from the Labour Party decades ago. Or rather, as it’s pretty clear some of those who were expelled have indeed joined, or tried to join, whether they are entryists, or just honest people who see the LP taking a leftward turn for the first time in decades and feel there is now a place for them. I’ve seen a couple of articles about how ‘entryists’ operate, and it has caused me to go back to my time as a Trotskyist, prior to joining the LP, and to reappraise it. Since I re-joined the LP just over a year ago, I’ve always made it clear that I was on the left, and had considered the LP to be too right-wing since Neil Kinnock took over, pre- Blair, for me to wish to support it. So I am completely open and honest about who I am and where I come from, as I see no point in being anything else.
So- here’s my history.  

In 1977 I got a job in a hotel in Oxford, while I was trying to finish my thesis (I never did finish it). I was parking cars in the Randolph Hotel, working with one other guy. I had already done a hotel job, and had been pretty appalled by the way staff were treated and what they were paid. So when a group of chambermaids decided they were fed up with conditions and decided to join the TGWU, and came round to talk to my colleague about it, I decided to back them up by joining too. I did it because I thought it was fair. I’d never been political, although I had backed a strike by the staff in my college when I was an undergrad and had always been vaguely left-wing. When all the staff who were known to be in the Union got the sack, I came out on strike to support them. I could have just left, but I thought the right thing to do was stand by my commitment in joining the Union. Once we were out on strike, standing on a picket line every day through all weathers, for 6 months over the winter of 77-78, we got all sorts of left-wing groups coming in to support us. That was when I met Trotskyists for the first time. They were all there – SWP, IMG, other groups whose names I forget, and a local off-shoot of the WRP, set up by men who worked in the car factory up at Cowley, called the Workers Socialist League. At first I wasn’t interested in all the political talk that went on. Most of the members of these organizations- like the SWP- were students, and even though I was a student, I still shared the idea that as they weren’t ‘real’ workers, they didn’t really have anything valid to say. But I was impressed by the car factory blokes who came down so consistently to support us, and gradually began to listen to what they had to say. I thought that if they - real working class blokes, thought Trotskyism had something to say to them, in their real-life, working situation, then there must be something in it.
Of course, as a historian, I knew about Marx. No serious historian dismisses Marx’s theories about economic causes underlying social processes and so forth. But I didn’t know much else. Eventually I joined the WSL, and spent about a year or 18 months being a Trotskyist (NOT a TrotskyITE!!) . The strike had ended, with no success, and I had got a job working on a milk round for the Co-op.
As a Trotskyist, part of my remit was to be a Trades Union activist – that is, go into the local branch of my Union, the TGWU, and sort of push things to the left. In any way I could. It was all a bit vague, but the image presented by this writer,
about how Trotskyists operate, is, I suppose, accurate. It wasn’t done in the cynical way he describes. The argument, as I recall, was that it was important to address the real concerns of working people, in the organizations they had set up for themselves, but try to keep those organizations from descending into trifling, bits and pieces about their working conditions, and inject a wider, more political perspective. Or at least, that is how I understood it.  
Anyway - after more than a year of attending meetings, trudging around council estates selling the newspaper, attending meetings, standing on the street selling the paper, attending meetings, going on demonstrations and mass pickets, attending meetings, being expected to provide my car, and myself as driver, for any use to which the organization wanted, attending meetings, well - you get the picture – I just decided it was all a waste of time, and resigned.  

But I had become politicized by the whole experience, and rather than giving up in disillusionment, I joined the Labour Party.  In my brief experience of Trotskyism, ‘entryism’ consisted of Trades Union activity. Joining the LP was considered a cop-out. But this was around the time when the Militant Tendency were openly advocating entry to the LP, so I can only speak for the lot I was mixed up with (and reading the Wikipedia entry on the WSL I see their policy on joining the LP changed around the time I left them https://en.wikipedia.org/wiki/Workers%27_Socialist_League ).  I’m not sure about the description of Trots as deliberately disrupting meetings and tactically using points of order and such like to scare off any moderate members in order to take control of local branches, but I think it is true in some cases. What I noticed was that all left-wing groups seemed to hate each other more than they ever hated Tories. I can certainly remember going to a Trades Council meeting in London where Jack Dromey was speaking, sounding pretty good, to my mind, but the attitude of my fellow Trotskyists was that he was some kind of lackey of the state or something.

Anyway - once I had left the WSL and joined the LP, I did indeed find that I was too left wing for the then leader of my local branch. This leader then left to join the newly formed Social Democratic Party, complaining that his local branch had been infiltrated by Militant Tendency entryists - meaning me and my husband.  My husband was not as left as me, and was really a floating voter, but he had rashly called this guy a fascist. It weren’t me, honest! Once he’d left, the rest of the Labour Party group became very enthusiastic and started producing a regular newsletter which we distributed free in our area. It was a lot more fun that what I’d done in the WSL, and really, the politics were better, although I had to learn that the LP generally doesn’t see itself as a Marxist organisation, which was a total shock to me. We canvassed the whole area during the election when Michael Foot was Leader, and also opposed Neil Kinnock as leader because we wanted the more left candidate. I suppose the reason why we didn’t get disillusioned by Foot’s defeat was that we were in such a strongly Tory Constituency that we knew we’d never win in our own area anyway.  I find the same spirit in the LP branch I am in now, in Theresa May’s constituency.  

My husband did accidentally get himself elected to the Town Council, rather in the way Jeremy Corbyn has accidentally got himself elected as Leader of the Labour Party. He put himself forward as the token LP candidate, because he was the only one available to do it, believing that we lived in such a Tory area that he’d never win, only to find that people voted for him because he looked honest and they couldn’t stand the other chap.  Some of them told him this as he stood outside the polling booth on the day. Of course it was quite boring and un-political on that town council, but he did his bit for the few years he had left to live. He died in 1984. After that, I moved to Wales and decided that none of this politics stuff was for me.

Now I’m back in the Labour Party, because of Jeremy Corbyn. The LP is shifting to the left for the first time in decades, and is finding itself attracting hundreds of thousands of new members for doing so.  It always describes itself as a ‘Broad Church’ but in reality the hostility of the right wing of the party towards the left has always been absolute, in the time-honoured tradition of the left always fighting amongst themselves. There is nothing new about this, it was the same when Foot was leader, and the reasons given by this generation of right-wing-Labour (I don’t like to call them right wing as I reserve that for Tories, but I have to call them something) – that Corbyn has no leadership qualities, that the British public will never vote for a left wing government, etc etc, are the same reasons they gave under Foot.  Corbyn has plenty of leadership qualities but too many of the PLP just don’t want to follow him. Their views were summed up perfectly by Tony Blair when he said he’d rather see Labour defeated than win on a left platform.  They really would rather destroy the party than work together with a left-wing leader. Even if they have to put up a fake leftie like Smith, to get Corbyn out. And they will never ever ever see themselves as the ones who are destroying the party. Or as the ones who can’t compromise, or co-operate.  Or as the ones who aren’t realists.

Having said that – I don’t want the Labour party to expel anyone who joins them, whether on the right or left of the party, just for having the wrong politics.   Obviously anyone who is a member of any other party that opposes the principles of the LP has no place in the party – that includes other parties of the right and left. But if people have joined the LP recently who used to be in other parties of the left, then they should be allowed to stay. A lot of them might be people like me. If they do proceed to behave in the way described in the article linked above, then they should be expelled because of their behaviour, not their politics. If they persistently disrupt meetings and prevent the business of any local group being attended to, then, yes, they have to go.  But that applies as much to those on the right of the party, within the PLP, who are disrupting the business of the Party and preventing it doing its work as Opposition and Government-in-waiting. 

Sunday 31 July 2016

Caring for my Mother: It’s as if Mum is in a golden, end-of-summer light.

31st July 2016
There’s a different feeling now. Something in Mum, or in me. I can’t say.
Somehow I’m able to be more present to Mum. Not really anything different in my manner – I’m still lost in a daydream most of the time. But the longing to be out of this has calmed.  I’ve made all my plans for the future, laid them well, and now I’m in a state of suspension, waiting for it all to happen. And I’ve written before of how the desperation to get on with the next part of my life has been physically unbearable at times.  But not now.
I’ve had a little holiday break away in Glastonbury for a week. I spent time with friends, or being quiet and just resting, I met an interesting philosopher and quite uncharacteristically for me, struck a conversation with her. So, yes, I’m rested and refreshed for the continuation of my duties towards Mum. That helps.
And I now have my camper van to sit in – I’m there now, smelling the summer scent of the pine tree a few feet away, enjoying the warmth and sunlight and sounds of nature. No traffic just now, as it’s Sunday, so no smells of petrol wafting in.  All of this makes a difference and keeps me cheerful with Mum.

But there’s something else. It’s as if Mum is in a golden, end-of-summer light. It reminds me of that moment of stillness one feels at autumn equinox – that pause and breath at the point of balance, the final enjoyment of the summer richness as the leaves begin to turn golden and release their sweet, musky scent as they drop.  I see this around her, but there’s nothing different in her manner.
She says ‘Thank you’ for whatever I do for her a bit more than before. But she still lies in her chair listening to music or watching telly.  She’s wasting away now – literally. The muscles are disappearing as they are now being burned up to replace the energy she needs to keep breathing.
Her stomach is too crushed to allow much food in so she can’t eat enough to replace the energy she uses. And breathing is a lot of effort now.
I gently rub her calves to get some circulation in there before she pushes up to stand and I’m shocked at how they’ve shrunk. One of the community nurses who came round to do her warfarin test the other day had not seen Mum for over a year, and she was struck by how much thinner Mum was. She measured her arm and compared it to what it was last time she came.  She said Mum had lost 2 cms from her upper arm.  I was shocked at how much that was, but I can see her getting thinner by the day. We’re going to have a visit from a community matron to see what else they can do for her. And we’ve been provided with a better cushion for her to sit on to prevent bedsores – apparently they no longer recommend fleeces. They want to give Mum those special drinks that are a food supplement, but it remains to be seen if Mum likes them. It’s hard to get her to drink, but anything will help.

But it’s more than this.  Even my longing and impatience have receded, and I too float in quiet suspension, just accepting whatever this stage of the journey is.

The other day I was getting Mum up from bed, helping her dress, and she asked me “How long do you think this goes on for? This….” and she gestured at herself.  I thought “I can’t just come up with some platitude, jollying her along, I have to be true to her.”  So I said “I can’t imagine what it must be like to be so dependent and unable to do anything for yourself.  I don’t think I could bear it as well as you are.” She replied, “Well, I’m worried about how it all is for you.” Again I strove for integrity, not to dismiss her feelings. All I could say was “Well, neither of us has ever done this journey before. We’re both having to work it out as we go along. It’s not like there’s an instruction manual. And we just have to find ways to deal with our feelings, as well as the practicalities.”

It’s true that I’ve become worried about being able to cope physically with Mum’s increasing weakness. I’m afraid I’ll pull my back so badly I won’t be able to keep helping her. I had discussed whether she might, after all, need to go into a care home.  We talked about it a bit with my brother when he and his wife came to look after Mum while I had my break.  But after thinking it through very carefully, I feel this would not be right for me.  To be honest, as things are now, I co-exist with Mum in the house.  Yes, I’m always on call, except when we have carers in, but apart from that, I just do my own thing.  I don’t often sit with her, I’m off in my own rooms or in the garden or in my van.  If she was in a home I’d find it unbearable that she would feel abandoned by me.  I’d have to go there every day to see her.  Even if she was in the same village as me, that would take out a large chunk of every day for me.  If I had to drive 30 minutes or so to get there then it would be pretty well half a day every afternoon.  And, once there, we wouldn’t have a thing to say to each other. I’d have to do what I’ve done when Mum has been in hospital, which is read to her.  And how would she play her super-loud music in a home where there’s other people to be disturbed by it?  My brother was quite favourable to her going to a home. He said “Once she was in one, she wouldn’t last long.”  Dear bro! He didn’t mean it as brutally as it sounds, just that tactfulness is something that’s always totally eluded him.  

No, it won’t do. From my own purely selfish point of view, it wouldn’t do.  Let alone Mum’s needs and feelings.

So, I’ll carry on here, with no idea what the near future will bring, grateful for whatever help I get.

And I’m looking for someone in my local area who I can go to for back treatments. Which means I will have to endure a lot of well-meant, but inappropriate, suggestions about little exercises I can get Mum to do, and how I can improve my lifting technique in ways that have no relevance to the conditions in which I actually have to lift Mum.

And I find I’m much kinder to Mum these days – I mean, more actively kind in how I speak to her, rather than being a bit withdrawn and depressed. I actively engage with her a bit more, use humour. Not jollying her along, just being more present with her in this place of acceptance where we both are now.



Saturday 16 July 2016

Caring for my Mother and being HSP

Back in the 1970s, when I was doing grad work at Uni, I used to go along to the Psychology Dept and earn myself 5 quid an hour by taking part in their experiments.  That was quite a bit of money in those days (and none of the experiments involved taking drugs).  One time I was asked to sit in a small auditorium facing a film screen, while I was wired up to some measuring devices, which measured my galvanic responses and eye blink rate. They then proceeded to subject me to totally boring stimuli in order (they told me afterwards) to measure how long it would take me to stop reacting.  This was the purpose of the experiment – to get a normal distribution curve for the length of time people can remain focused and alert in the presence of uniform, boring stimuli.
The stimuli were a light shone through a slide projector, with no slide in it, onto the screen, and a beep sound. These were activated at random intervals, sometimes together, usually one after the other, with no pattern to them. Also the room was darkened, just to make sure there was nothing else for me to look at.  Once I had reached a state where I was nearly comatose, they then played some stimulating slides and sounds, and then started the whole thing again. This time it took me a shorter while to get to the point where I wasn’t reacting at all to the light and beep. When it was all over the 2 students who had set up the experiment were oddly annoyed with me. It turned out that this experiment usually only lasted around 30-40 minutes max. I was there for about 2 and a half hours. I was there for so long that someone walked into the room where the experiment was taking place, expecting to find it unused, as it had only been booked for one hour.  Which aroused me so they had to start all over again. They were unhappy about it because they had to pay me for all that time, but my results were useless to them, because they were trying to find a normal distribution pattern, and I was clearly not normal.  When I asked them what this meant, they just shrugged and said it meant I had a highly reactive nature.
If they had been a little more curious, they might have been the ones who did the research that led to discovering, and writing about, Sensory Processing Sensitivity.  Instead, it was Elaine Aron in her book ‘The Highly Sensitive Person’ (1996).
https://en.wikipedia.org/wiki/Sensory_processing_sensitivity

I read this book back in the 90s, when it was quite new out, and found it immediately helped me understand all sorts of things about myself, and to look after myself. In particular it gave me permission to ‘close down’ when I need to, rather than just trying to keep struggling on when things become overwhelming for me.
SPS is a temperamental or personality trait characterized by an increased sensitivity of the central nervous system and a deeper cognitive processing of physical, social and emotional stimuli. It’s more often found in introverts, though apparently it’s not exclusive to them. It’s also associated with, but not synonymous with, high intuition and empathy. Basically, High Sensitives react more strongly to sensory input both from their physical environment, and also from human interactions, so they read body language, tone etc in greater detail (though not necessarily on a conscious level). It’s like we don’t have the same filters as normal people, (I’m using the word ‘normal’ as I can’t think of anything better to call it), hence my continued reaction, in the experiment, to stimuli that most people would have filtered out long before.

One effect of this is that I make a very good carer. My heightened ability to notice things, even subliminally, about my Mother, means that I am much more tuned in to her needs than many would be.  I’ve always tended to look after people for that reason. Apparently this is very common in High Sensitives, and they often end up in multiple caring roles where they take on so much that they burn out.  Which I have also done in the past.

My challenge in my present situation is to take care of myself. My ability to take care of Mother is something I utterly take for granted, but my ability to look after myself is moot, to say the least.  I hope that all the years of slowly piecing together some level of self-understanding – of which Elaine Aron’s book is a key part – mean that I can be aware enough of my own needs in this situation to be able to meet them.
Mainly what I regularly need is to be able to go off and be quiet and alone for periods during the day. This becomes especially necessary when family members come to stay. Whilst being hugely enjoyable to have them there, the constant talk just drains me.  When I think back to my childhood I recall how often I would just go to my room and read a book, or play some solitary game, when I needed a break from all the noise of brothers.  I just knew what I needed back then, but of course, going off on one’s own is regarded as bad manners or strange, so as I grew to adulthood I found this behaviour tended to be overridden by the need to do what others wanted of me, so I learned to ignore my need for quiet.
Actually, all this makes me pretty well suited to what I am doing now.  I’m used to entertaining myself, I’m living a quite solitary life within this household with my Mother.  Most people just wouldn’t be able to do it, and of course there are times when I feel I can’t do it anymore.  But if anyone can, it’s me.

Earlier this year a new Meet-up Group was started in my village for HSPs (Highly Sensitive People). I’m not a group person, but HSPs rarely are, so I felt most people who went to the group would be like that too.  Which I felt would make for an interesting and congenial group and it was just down the road from me. So I started to attend.
It’s pretty good.  I like the facilitator and listening to the others has helped to remind me of the HS aspect of my nature and how I need to look after myself in relation to it.
In the group, there’s been a lot of focus on noise, because some members have noisy workplaces, and one has a HS child who has difficulty at school because schools simply do not have silence or quiet ever these days.  And noise is so intrusive and hard to get away from.

As a result of this I realized there is a big problem I have been trying to ignore and filter out, rather than actually address, and this is the issue of Mother playing loud music all through the day. Or loud TV.  Really, it’s so loud even non HSs struggle.  I have noticed that I no longer seem able to do any creative work, writing, art, SL choreography, during the day, and I had connected it with the over-loud music, which has become so much worse in the last year or so as Mother’s hearing has seemed to deteriorate rapidly.    As soon as the music starts I feel as if the inside of my head fills with glue, like a piece of clockwork that’s had too-thick oil put on it.  I’ve described this in a previous post, but had not really focussed on what a problem it is for me.
After my first meeting I did start to think this through and realize it's an issue
I need to do something about.  Mother agreed to go for a hearing test, and was found to have hearing impairment that was typical for her age, but when we talked through what Mum actually wants to do about it, she said she was quite happy with herself as she is, it’s just other people who find it difficult.  I had misgivings about how fiddly hearing aids are, as I was envisaging myself having to help her with them all the time, which I just don’t fancy. I have enough to do.  So, I decided it was really my problem, not Mother’s, and therefore it was up to me to do whatever I needed about it.

The long and the short of it (HSs love to tell convoluted tales detailing why they arrived at a conclusion) is that I have used a small legacy inherited from an aunt, and bought myself an old camper van, a 1988 VW Transporter, which now sits in the front garden, with an electric cable from the garage, and I go in there with my computer or my book, and I enjoy blessed peace for an hour or so. Not only is it quiet, but I am semi outdoors, even when it’s raining, and that is utter bliss.  So far I have no plans to take it camping, but no doubt I will.  And it’s a useful spare bedroom when lots of family come to stay.
I was going to call her Rose, coz I like that name and she has rose-coloured upholstery inside. But then I found an elephant key ring on the keys I got with it, and was reminded of an old banger of a car we had when I was a kid, called Nellie (as in Nellie the Elephant) . So I decided to call her Nellie Rose.
I’m actually in love.
Poop poop!

Tuesday 21 June 2016

Caring for my mother: “Get off your cross, we need the wood.”




I know some of the posts I write about caring for my mother are a little depressing.  I write those things because I know I am not the only person in the world caring for someone and having the same ambivalent mixture of love and depression at their situation. There’s no getting away from it – it’s depressing seeing someone slowly fade away like this, and it’s depressing being tied to them. It’s difficult for anyone to be so dependent on others for their most basic needs, and it’s hard having to be the carer, fitting one’s own life around the routine of someone else’s physical needs in such a way.  And it’s made worse by not having any end-date to the whole process.

I’m lucky that my mother doesn’t take out her own frustrations at her dependency on me – I’ve had that done to me by a disabled partner, who just basically abused me because of the sheer frustration of being disabled. Maybe the fact that Mother has so little energy, and therefore doesn’t really want to do much, makes it all less frustrating for her.  I’m the one who gets frustrated - when I am interrupted in something to go and help Mum to the commode, or have to constantly think about the time, when I’m away from the house.  That heavy sense of feeling trapped when the first thing I have to do on waking in the morning is to go and help Mother to the commode, even before I have a cup of tea. I try not to get ratty with her about that, but sometimes it does slip out.

But I hope that by sharing these things, there may be one or two others who are struggling in the same way, and who will feel less alone and less bad about themselves for their own feelings of desperation at this so-long process of being tied to someone who is waiting to die.

I’m aware, also, that there is a danger in my deep exploration of what my relationship with my mother has been about all my life.  We all have some issues with our parents, and most women have some conflict in their relationships with their mothers, and I am aware that for some who find themselves in this situation, those buried grudges can emerge in violence and ‘elder abuse’.

For myself, it’s good and helpful for me to dig up, root over and sift through all of that – to unbury the old grudges, to see where they come from and name them. Others would say I’m wallowing in the dark side.  But for me, it’s a way of finding the light.

Sometimes I feel it’s a detective story, finding what’s behind the mysterious silences, the not-sayings, the blind spots that point to things in the past that have been handed down the generations like one of those inside-out houses created by Rachel Whiteread, that tease you to find their true, right-side-out shape.  Over the past few weeks my search has led me to some startling revelations, but I’m not ready to write about that here yet.

What I want to say is a response to someone who follows my blog, and who communicated with me by IM that she thought I was playing the martyr in what I wrote.  Her words were “Get off your cross, we need the wood.” A curious expression I’d not heard before. She also pointed out that I was not the only one who had problems.  As I know she does indeed have her own problems, I preferred to wait until I’d found the appropriate response for her.

Because all we can do is try to help each other.
So often we are told to stop feeling sorry for ourselves, or to keep a stiff upper lip, buck up and carry on.  In fact we do have to just carry on, but that doesn’t mean we can’t feel what we feel. We’re told all our lives that we are not allowed our feelings, because it’s upsetting to others. So we numb ourselves, and try to numb or discount others too.  Then when we see someone who is not prepared to do this, we get into competitive victim-playing. “You think you’ve got problems, well what about me?” As if there’s only room for one or two people to have problems, and we all have to prove our right to feel unhappy, or hurt, or traumatized.

And it’s so easy for me, as for many, to get hooked into this. I do feel I have no right to complain when there are others who are so much worse off than me. Part of the issue between me and my mother is a pattern of not being allowed to feel my own feelings, or to have my own perspective on things. Parents often think they own their children’s minds and souls, and deny them the space for their own life.  So also do teachers and others in authority over us.  So it was easy for that reader to upset me to by her remark.

But it’s not about whose problems are the worst.  Even though I am empathic, I still can’t actually feel another’s pain. Only they can feel that. And whatever pain I am feeling is not made any less by denying it, or my right to feel it. If I allow my own feelings, then I also have the capacity to allow another’s feelings too. It’s not that I wallow, I just allow space. And because I can feel comfortable with my own feelings, negative and crap though they may be at times, I can also feel comfortable with a friend who comes to me with her own problems.

This is not an original concept - it’s so general that it even made it into a cartoon movie called Inside Out. In this Sorrow keeps bursting into tears all the time and spoiling things for Joy, but it is she who gets them out of their impasse, when Joy, Fear and Anger just get them into worse problems, because Sorrow is able to just say “I know how you feel,” thereby allowing all the bad feelings to have their place and therefore step back a bit and let a different perspective come in.  I loved that film. So glad that children are being taught this basic piece of wisdom.

So - I repeat – this is the purpose of my blog. Not to wallow in my own misery, but to say to anyone else who’s out there, struggling with the same issues, “I know how you feel, and it’s alright for you to feel these things too.”

We all need to stop crucifying each other, and just carry the wood for as long as it needs to be carried – yes, feeling the pain it gives us – but still carrying it.









Sunday 29 May 2016

Caring for my Mother: It just goes on and on, this.

It just goes on and on, this.

I think of other women I know who looked after their mothers in their homes, for their final years. 
How long did it last?
One friend said 8 years.  Another’s mother lived to be over 100. 
That friend of my mother’s, who lived up the road, hung on for years and years, though her daughter lived next door with her husband, not in with her. But she and her husband were both off like greyhounds from the trap as soon as she died.   Only held there so long by that thin dusty thread of life, which just would not leave.
Whenever Mum used to go and visit her, she came home so depressed - afraid she, too, would linger like that, half blind and barely able to focus on the present, so lost was she in her past.  Now I’m afraid this will, indeed, be what happens to Mum.

And I openly, consciously, long for it to be over. 
Please, Mum, it’s time. Please go now.
Put so baldly, it’s brutal.  But I know I am not a brutal person, so I let it be what it is.
Life is not so easily extinguished.  You don’t just die.  It takes something to make it end.  Mum’s breathing is terrible, she’s tiny and bent and thin, but she’s quite well. She eats like a small child, but still enjoys her food. Her bowels pass. She toddles in a small circle, clumping her walker along the carpet, her complexly twisted spine listing over to the right, so she’d fall if not for my steadying hands on her small, brittle hips. 

Her only way of passing the time is to listen to music or watch her TV programmes.  All turned up so loud the house feels like it’s filled with a dense, syrupy membrane of sound, which I have to push through as I move round, doing my duties, or sitting in the study, at my computer, trying to think anything at all, under the crashing waterfall of music on my head. 
I’m slowly turning into a ghost. It’s I who am slowly dying.  There’s no way of saying that I am leading my own life still, somehow, in this situation.  I’m just waiting.  It’s me that has to try to keep breathing, not Mum.    

It would be alright if this was the first time I’d ever looked after someone, been of service.  If I’d lived a life of my own choosing and flown my own trajectory, and only now chosen to do something for another. To sample a different flavour of life in my mature years, where the intent is simply to be there for another, no longer to strive and achieve for myself.  I know people who’ve come to that in their mature years and found doing something for others to be a life-changing and enhancing experience, calling up qualities in themselves they never knew were there.
But that’s not true for me.
I’ve looked after other people all my life.  Always put my own dreams and ambitions to one side, thinking “I’ll do that one day, when I have the head-space.”  My inner spaces were always full of the clamour of someone else’s needs.

It was a form of cowardice really. 

Believing I had no right to put myself forward as an artist or writer.  All the voices of family and school reverberating inside the cavities of my self-belief, that only other people became writers, or illustrators.  I never could see how I could get from the world of my imagination, where projects would form fully, in Technicolor, into actual corporeal life.  There was a massive reality gap between A and B that I had no idea how to bridge.  If something did find its way into writing, as it did in notebook after notebook, what then? What was the next step?
Back then, my whole life was a kind of waiting – while I got on with jobs, and marriages, and seemed so strong and decisive.  On the outside I walked my own path, even defied ordinariness, while inside I was waiting, just waiting, for my fairy godmother to say “You shall go to the ball.”

It was a moment of epiphany when I decided no-one was going to live my life except me, back when I left the Dreadful Mistake husband.    That was when I realized about this waiting thing that I’d been doing all my life. Waiting to be rescued from my tower.  
Even now I remember dreams I used to have about a trapped ghost or some surreal half-human creature that lived in the attic of my life. I’d be trying to love it and bring it out of the darkness, but the dream would always turn away into some other busyness and I’d forget about the creature – my own lost self.

When I got away from the Dreadful Mistake that was my decision to end that waiting, and rescue myself. 

And I did.

At that time I saw myself as a large rambling house, full of secret rooms.  Locked doors would open out into beautiful, sun-filled, empty rooms, or dark terrifying cellars, or a confusing labyrinth of corridors and rooftops that I would chase along, until every last room and hidden space had been opened, explored and redeemed. Pulled in from a floating, balloon-like separation, to be connected, known and celebrated.  

And I did.

And then, of course, the house changed, and became a new landscape, leading to further journeys.
And each time I’d end up looking after someone, not really doing my own thing, still waiting for my chance.  The same thing over and over, a hard, spiralling learning. 

So, now, here I am, fully facing up to this habitual cowardice of mine.  The way I bind myself to another’s needs, rather than meeting my own.  Living in a dream-world, because it takes a self-belief I am too lazy to cultivate to make the dream a reality. 
And this time I really can’t do what I’ve always, somehow, managed to do in the past – leave.

The last, terrible, parting that brought me here, to my mother’s house, has healed. Plans for the future are based on all that I have learned from my often difficult path through life. Everything is ready, and I know I have the inner resources to create what I am planning.
But I can’t leave.
This time that really isn’t a choice.
I’ve thought of it. Oh yes. Even talked to mother about “Enough is enough” and “It’s time for me to get on with my own life now, Mum.”  But it was simply not possible, for completely practical reasons.
So I stay.
And wait.
And look after someone.
And dream.
Just as I always have done.

I think there is a difference – a big one – in that this time I am conscious in my dream, not just half-numb and ignoring what I’m doing to myself.
And the strings of attachment are not made so much of love or guilt. I am simply living with this woman who gave birth to me, and whose face I wear, but all resemblance ends there.  We’re comfortable with each other, in that day-to-day way, but nothing else.
When I ask myself what I truly feel for this woman, my mother, I have no answer. She’s just there. Always has been.


Maybe when she’s gone I’ll be able to answer that question.