September 2010


She didn’t believe in anything very much.  Communism, fascism, altruism, capitalism, collectivism; they were all the same to her; forms of subjugation and oppression.  No, what Ayn Rand believed in was objectivism, “the concept of man as a heroic being, with his own happiness as the moral purpose of his life, with productive achievement as his noblest activity, and reason as his only absolute.”   Rand argued for rational egoism (rational self-interest), as the only proper guiding moral principle. The individual “must exist for his own sake,” she wrote in 1962, “neither sacrificing himself to others nor sacrificing others to himself.”   

The difficulty is that she used her philosophy and the attention it attracted to justify her excesses of self aggrandisment and selfish behaviour.  Her’s was the philosophy of the narcissist.  Rand opposed every grouping that was not hers.  There had only ever been three great philosophers; the three A’s, Aristotle, Aquinas and Ayn Rand.  Her followers were disciples of a personality cult. 

Ayn was a formidable personality.  The film of the same name focussed on her love affair with the young Nathaniel Brandon, who together with his wife Barbara, had fallen under Ayn’s spell while callow psychology students.  Nathan was in thrall with Ayn and she soon exploited his infatuation to seduce him, but she insisted that they inform their partners and limit their relationship to a year, a strategy Ayn justified philosophically.  Of course,  it went wrong.  Barbara, not long married to Nathan, was deeply unhappy and found somebody else.  Nathan tired of Ayn’s demands and in turn exploited one of his own students.  When Ayn discovered this ‘infidelity’, she was furious.  How dare anybody betray her?   She slapped him across the face and excommunicated him from the Ayn Rand foundation;  assuring him that he could be nothing without her.

Ayn was so fascinating because she was so dangerous and forthright.  She demanded absolute devotion and control.  Hyperbolic and emotional, she possessed the passion of the hysteric.  She held her disciples in a vice-like grip of life and death; such was the unyielding power of her personality.  She could be effusive and kind to those who worshipped her, but woe betide anybody who ignored or betrayed her.   And her disregard for society was ruthless and uncompromising.  “What are your masses but mud to be ground underfoot, fuel to be burned for those who deserve it?”  

 Ayn, was born Alisa Zinovyevna Rosenbaum in St Petersburg  and grew up during the revolution,  escaping to America in 1931.   The alienation of the Russian jew,  the insecurity and danger of the civil war, the mobile allegiances, escape to a foreign culture; all of these had implanted a backbone of steel;  the single-minded self-centered determination of a remarkable survivor.  Her philosophy emanated from a unique and unusual experience.  It is worth studying as an idiosyncratic social commentary, but so dangerous to adopt as a template for western society. 

But I wonder how much influence she has had.  Doesn’t her attitude justify the narcissistic culture and the decline in community and society over the last 50 years.   Hasn’t ‘because you’re worth it’ has become the catch phrase for the material meaninglessness of a generation?

It wasn’t that she was meant to set fire to the hospital.  It just happened.  Well, it had been a long day and he had been on at her again!    ‘Have you recruited more volunteers?  Where’s the revisions on the protocol?  And have I seen the data from your last set of experiments yet?  Karen, how do you expect to get your PhD unless you work until you drop and then get up and work again.’  I mean, what was this guy on?    

So she cancelled her dinner engagement with Rob and stayed late again, agreeing to meet him for a drink when she’d finished.  But she was hungry.   Was there anything in this Godforsaken hole that she could eat.  Ah, the baked beans!  She fed them to her volunteers and measured the hydrogen they exhaled.  There were cans of them stacked all around the room, enough to launch a Zeppelin.  OK, she’d fart all night but what the hell.  She was hungry. 

So she opened a can and stuck it on a tripod and lit the Bunsen burner.  Then the phone rang in the office.   ‘Could we talk about this last set of experiments.’  ‘Could you open up the database and just check…..’   By the time she’d finished, she’d forgotten all about her beans.    Bloody smoke alarm was blaring somewhere.  But, it was always going off.   Fuck it, she was late and needed a glass of wine.  And now the bastard lift wasn’t working and something had happened to the lights.  Nothing for it but the stairs, but she was on the eleventh floor.   

It still didn’t register when she saw the fire engines.  There were five of them lined up in the road, sirens still blaring,  blue lights sweeping the buildings on either side.  Firemen in helmets and bright yellow overalls with axes and torches were tumbling from the cabs and rushing past her to the stairs.  Funny time for a fire drill, she thought, as she rushed out into the cool night air. 

Rob was none too pleased about being kept waiting, but he could see she was flustered,  ‘Did you get anything to eat, love?’ he asked.

She stared  at him, with focussing, unfocussed,  then  her eyes grew wide and her mouth opened    ‘Oh fuck! Oh fuck, fuck, fuck!      

They’d started evacuating the patients by the time she got back.  Some were standing there in little groups, shivering in their light green hospital dressing gowns, more were coming out in chairs or on stretchers.  She tried to get in but a policeman stopped her. ‘You can’t go in there miss; there’s a bomb.’

‘No there isn’t, it’s only a can of beans.’

‘Aye, you might say that, but move along now.’

When she got back to Rob’s, the news was on.  ‘We break into the programme to report a possible terrorist attack on Sheffield’s Royal Hallamshire Hospital.’  She listened in shocked silence.  She could see it all, the beans charring, catching fire, setting the papers and the boxes alight, the cans exploding, the sprinklers going off, the lights shorting, panic, evacuation.  Oh fuck!  It was the only thing she could say. 

It was all over the newspapers the next morning.  Terrorist attack in Sheffield!  There were even  questions in the house.  ‘Why had the right honourable gentleman ignored our warnings?’  ‘Why hadn’t this government improved security in our public institutions?  Why had they cut funds to the fire service and the police?    There was no way the government, already in trouble, could survive a vote of no confidence.  They held  a snap election and lost.  ‘Fired’, the headlines screamed.  The Conservatives got in on a ticket of Health and Safety.  And six months later, Britain joined the Americans and declared war on Iran.

It’s all chaos. A butterfly flaps its wings in West Africa and there’s a typhoon in the South China Sea.   Karen cooks beans on toast ……. and well, anything could happen.

I’m not sure she knows me now.  Most of the time she sits pulling the hem of her dress across her bare knees, leaning forward and then lying down in her chair, picking at her sleeves, trying to undo her buttons; her face a sad mask of confusion.  She seems oblivious to the sounds around her, the shouts, snatches of songs, the moans.  ‘I don’t like it.’  ‘ They’re coming to get me, you know.’  ‘My mum will cook me supper when she gets in from work.’  All gone, lost in their own vanishing world.   Only a nurse passing across her field of vision brings a brief touch of animation; she reaches out, points and then with infinite resignation lets her hand fall back again. 

I try to gain her attention.  ‘Hello mum.  Nice to see you.’  There is no response, then like a beast in a field, she gradually turns her head and stares into my eyes, a look of slow reproach tinged with confusion as if she knows she knows me but can’t quite work it out.  It’s like her slow memory of me doesn’t quite fit.  She has gone to another place; a place that I had put her, a place where I can’t follow. 

 With infinite sadness, she moves her head across, leans her head into the gap between my shoulder and neck.  I stroke her hair, silky grey,  washed and combed that morning.  She pulls away, looks at me for longer  – mum was always good at the long looks.  I meet her gaze, hold it, will myself to energise the connection  –   but her battery is low, the circuits  slow, faltering, missing.  Then a glimmer in the hooded eyes, a recognition.  A flash of panic.  ‘Too much, too much.  She looks down, puts a hand up to her face as if to weep, but buries her nose in it instead,  as if hiding from an intolerable reality.   After a while, she looks up again, makes as if to speak.  Perhaps, even now, there will be a meaningful comment, something I can console myself with, when her body has gone and the formalities complete.  I put my ear to her lips. 

‘I want to go to the toilet.’

It was 1789. France was still a feudal monarchy.  All the power and the wealth was in the hands of the aristocracy,  the King was like a God.  His ancestor, Louis XIV, the Sun King, had built himself a wonderful palace in Versailles.  The people had no voice. All the power was in the hands of the aristocrats and the church.  The country was run by the wealthy; the Estates General.   

But there were stirrings; people were restless, the intellectuals and lawyers met in the cafes and talked of revolution.  he American War of Independence had shown them that it was possible for a people to rise up against their European masters and succeed.   It just needed the spark.  A volcano erupts in Iceland,  the climate cools, the wheat crop fails and Paris explodes.  Starvation on top of everything else; it was too much.   

From its instigation in 1789, events gathered momentum like red hot lava.  The Estates General  was abolished and replaced by a more representative National Assembly, but the members were locked out of their meeting house.  The mob stormed the Bastille, the peasants refused to work on the estates, the monasteries were suppressed, wars of conquest were renounced,  the nobility was abolished.  The Government  changed every few months.  The National Assembly was replaced by an inexperienced Legislative Assemply.  This in turn was dissolved to be replaced by a revolutionary commune, which appointed its own tribunal. The King was forced to abdicated and was then  beheaded.  The country disintegrated into chaos, a  reign of terror.  Nobody was safe.  Anybody who looked rich or who has intellectual pretensions was executed.  Even the architects of the revolution, Marat, Danton and the incorruptible Robespierre were despatched by the guillotine.

The French Revolution terrifies me.  How is it possible to live through such anarchy with any sense of integrity and humanity?  .How could a civilised country disintegrate into such chaos?  Could the mob be released here?  Have you ever stood in the Kop?   

So could it happen again?  Could it happen here?  Now?   Yes, if things got bad enough.  George Osborne is swinging his machete with reactionary zeal.  His cuts are going deeper and more quickly than most of us anticipated.  His assertion that people are making a life style choice in claiming benefits is so provocative.  It surely emanates from someone out of touch with real world of the electorate. It will anger many and may well provoke violence.    

I suspect we are in for a very difficult winter and I am not sure the government will survive it. ‘This is no time for novices’, Gordon Brown said.  It is beginning to look like he was right.  Osborne seems carried away by enthusiasm, intoxicated by a delusion of self importance. Is there nobody who can express a note of caution?  Does the government know something that we don’t?  They need to come clean, to demonstrate in terms that are clear to all, the depth of our plight, to offer leadership and guidance as to how to survive it.  Otherwise people will just view the cuts as the desperate acts of an incompetent and insecure government.  They will take to the streets; the mob whipped up by the media, will be released.  It could happen!  The firemen and postal workers are already threatening strikes.  The TUC has urged civil disobedience.   And against the background, the government is also planning cuts in the military and the police.   

My fears were inspired by the performance of Danton’s Death at the National; such is the role of theatre.  Toby Stephens and Eliot Levey were so powerful,  the set so  dramatic, the direction by Michael Grandage so terrifying. Do not see it if you are a nervous disposition.  Just collect any bits of wood, boxes, broken down cars, anything and start building.    

Or …The Jealous Sculptor and The Empty Princess

Max had just been appointed deputy superintendant of large asylum outside London.  Stella was just too wilful and needy  to be his wife.  She should have been an  actress or a singer; a celebrity.  She needed love on a bigger scale.  Coffee mornings with the other wives just bored her to tears.  She sat there, cool and distant, her chair slightly moved back to display the crossing of her elegant legs beneath the Paris dress,  the raised arm,  the casual cigarette.  She was the princess, the film star Stella, Audrey Hepburn, aloof and sophisticated, not of the same world.  So, with the smoke of her cigarette uncoiling,  she dreamt of concerts and the theatre, intelligent conversation and nights of passion, while the others,  dumpy, flowery, and perm-eager,  planned bring-and-buy sales and afternoon teas.  It wasn’t her scene, not even her act or play.  That kind of life just bored her. Everything bored her.  She was meant for something different, but what?

Stella was one of these women who had to live through her man.  She needed to be desired, possessed and consumed by her lover.  If she was not desired, she wasn’t a woman, she could not live.  She was empty, deplete, she no internal resources; nothing interested her.  So here she was, out in the sticks, living in a house in what was essentially a prison camp with a man, who was dedicated to his work and looked upon her with the same disdain as he did his patients.  Only her son, Charlie, gave her some of the need she so desired. 

Stella had the kind of narcissistic personality that desperately needed that focussed attention and devotion that only somebody who was a little crazed himself could give her.  Then she met Edgar and recognised herself in him, the feral desire in his naked gaze grew hot inside her.  But affairs need opportunity to ignite.  This was provided by the annual hospital ball.  She wore a revealing black dress, slinky as a sheath, plunging at the neck and back.  Edgar saw her and not so much asked but demanded she dance with him.  But when she felt the urgency in his erect penis and tilted her pelvis to meet it, she was lost;  there was no turning back.     

Edgar was a trusty, he had murdered his wife in a fit of jealousy but was now considered safe.  He had been sheltered under the sinister wing of Peter Cleave, the senior psychiatrist who had a special interest in sexual offenders.  Calmly brooding away his time until he could be discharged, Edgar was considered safe enough to work for the Raphael’s, but Cleave had not considered Stella’s role, or perhaps he had!  They met in the conservatory, fucked hurriedly among the broken glass, one eye open for wandering screws.  They hardly talked.  Theirs was an animal passion. 

One afternoon he came to the house, to her bedroom, but was nearly discovered.  He hid in the boot of Max’s car and was driven out of the grounds by his hatchet faced mother.  He escaped to London.

 As soon as it was safe, Stella invented the pretext of a shopping expedition in town and joined him for an afternoon of passion.  Max became suspicious, they argued and while he was at work, she packed a suitcase and left.  After a few weeks,  Edgar’s jealous rage was inflamed by a her flirtation with Nick, his partner.  He attacked her, beat her up, split her lip, but before he might do anything worse, she was arrested and returned to Max, who by this time had been dismissed and was working in North Wales.   

Edgar discovered where she was, arranged to meet her but was ambushed by the police.  Stella, dazed and confused left on a field trip with Charlie but she was so preoccupied  that she failed to notice when Charlie slipped into the dark lake and drowned. 

She watched the funeral from a police car and was then admitted to the asylum under Cleave, who offered to rescue her with an offer of marriage while at the same time taunting her with the possibility of meeting Edgar again at the annual ball.  Stella changed into the same black dress, but Edgar didn’t come.  He had been locked in his room by the devious Cleave, so Stella escaped on the tower and jumped, crashing to her death through the plate glass roof into the hall. 

So what are we to make of this?  To what extent were the major characters mad or to what extent were they driven mad?  Edgar was certainly the nearest to what we would recognise as madness.  He was the self obsessed artist, a Lucien Freud type figure who wanted to possess his subjects by creating them in clay.  His need for absolute control and possession was so great that any hint of betrayal, he would destroy the object of his obsession. He had bludgeoned his wife to death, cut out her eyes and removed her head.  Stella knew this, but was so excited by the passion and desire of the man, so needy, so impulsive, that she ignored the risk.  Like the extreme rock climber, she was willing to court death to achieve life.  And when it all became impossible and she was faced with a living death as an object in Cleave’s museum, what alternative had she but to kill herself.  

So who possessed who?  Edgar wanted to possess Stella by turning her into his object, his maquette.  Stella just wanted to be possessed.  But it was Cleave who possessed both of them.  They were his specials. 

And who was mad?  Well in a sense all three of them.  Madness might be said to occur when preoccupations become reality and acted upon.  So abandonment to any kind of passion, love, anger, revenge are all forms of madness, and if  sustained could well be sanctioned by society.  Cleave’s madness is more subtle since it is concealed behind a mask of professional authority but is the most dangerous of all.   

 

I wrote a blog on Asylum last year (2.11.09).  I didn’t look at it before I wrote this.  When you see a film for a second time, you see it differently.  Asylum is being discussed by Sandra Thomas at the Biennial Conference of The Hallam Institute for Psychotherapy on October 2nd

It’s the smell that hits me first.  Not the ferrety lemon yellow scent of the whole building, but a dense, dark, dirty green,  pungent ammoniacal stench of soaked-in urine that has started to degrade, the stench of hell.  This I become aware of a subdued moan; ‘Oh dear, oh dear, oh dear, oh dear’, never stopping just altering in intensity and pitch as she senses my presence. 

Mum is lying in a padded space, more like an open coffin than a bed.  Her bed clothes are down by her ankles, her best  dress that she created so carefully in happier times, is up around her waist revealing a loin cloth of  padded paper soaked in urine.  She crosses and recrosses her bare legs in a parody of orgasm.  She tears at her buttons.  Her eyes are wide with terror. 

I lean over her, kiss her forehead, look into her unfocussed eyes and say ‘Hello Mum.’  At that she turns and glares, reaches out with a claw and pinches my arm hard.  At 94, she can still hurt.  The litany pauses and changes,  ‘Please, please, please. Oh Nick, oh Nick, oh Nick. Unkind, unkind.’ It  breaks my heart to see her like this.  Hadn’t I promised never to let her go into a home?     

They bring her supper in and I try to spoon some soup into her mouth.  She swallows a few sips and then pushes my hand away as terror fills her eyes.  ‘No, no, no!’  I tear a morcel of egg sandwich and place it on her lips.  She opens her mouth and chews then spits the masticated pulp into my hand.  She takes a few sips of juice and then glares at me again.  No,no,no! 

A young nurse comes in, leans over her bed and asks me what she should do.  As if I knew!  Just be calm and keep trying.  At that mum reaches out and grabs the scarf she wears around her head and pulls.  ‘No, mum, let go.’, I say sternly but she just holds more tightly and tries to pull the poor girl into her coffin.  I distract her with more drink and she releases her grip. 

Mum has needed round- the- clock care for about a year.  It has worked well for most of the time.  She has been able to stay at home, she could eat, go to the toilet by herself, walk with a frame and she has slept for a bit most nights.  Things were stable, though she had occasional bouts of aggression in which she scratched and bit the carers.  Then her two main carers became ill.  Overnight, she refused to collaborate.   She insisted in going to the toilet unsupervised.  The inevitable happened.  She fell, lost confidence, wouldn’t walk, got a chest infection and ended up in hospital (see The Averted Face of Care, 5th September).  By the end of the week in St Benedict’s, she was started to walk again, she was dry, feeding herself and ready to go.  But she could not be assessed to go home for another week and besides it was the weekend again and she needed a hoist so the carers could cope.   There was no alternative but a nursing home.  With a sinking heart, I reluctantly agreed. 

Perhaps I should have checked Silverdale out, but it was the one used by St Benedict’s and as I indicated to the sister, the plan was for a week’s further mobilisation and then back home.   Besides, this home was one of the most expensive in Sheffield, so, I reasoned that she would have the best chance of getting back home quickly.   But I was wrong. First impressions were that the home seemed crowded,  understaffed and functional.  There were thick carpets on the floor and that pervasive ferrety odour.  Mum was asleep when I arrived and when I came back later, she was being bathed.  I asked the nurse how she was settling in.  ‘Oh fine,’  was the answer.  Why is it that when people say fine, you just know it’s not.  What does FINE stand for?  Frightened, Insecure, Neurotic and Enraged.  Yes truly, mum was fine.      

So many people, including those who should know better like doctors, nurses and carers  make the mistake of thinking that just because a person cannot seem to think and express themselves, they don’t feeling anything.  No sense, no feeling, they say.   It’s not true.  Our cognition tames and makes sense of our feelings.  If we have lost our cognition, then we cannot deal with our feelings and we are left with the terror with no reassurances to calm it.   

I can only think that for mum it must be like being shut up in her own personal Gulag, deprived not only of  freedom but also of personal contact, suspicious of everything and everybody, terrified of what they might do to her,  subjected to sensory deprivation, extreme physical discomfort and the most degrading indignities every minute of the day.  Guantanamo was never as bad as this and yet old people are condemned to this every day in our own towns and cities.  No wonder they decline so alarmingly.  What makes it seem worse is that mum is such a private person,  so nervous of other people.   She and those like her, must feel the sheer terror, and yet there is nothing that she or anybody else can do about it.  She suddenly plummets to the next tier of system of care.  Some may ‘settle’, but the majority, I fear, never get over it. 

Don’t think I am complaining about any particular home or any staff.  I think most really do their best.  It’s the system, which seems to encourage a policy of organised neglect rather then care and rehabilitation.  I just feel the system is more concerned with insurance and health and safety regulations that are more about fear of litigation than compassion and care.  Elderly people have experienced rich, diverse, interesting lives. They are a rich resource of history and wisdom, not just a bit of old crumble waiting to die. They deserve more than to be institutionalised and subjected to such trauma.  People would be outraged if this happened to children.  And they would never, ever treat a dog like this.

Cuts will hit poor 10 times harder than rich – report.   This was the headline in this morning Guardian.  Well, of course they will!  It’s common sense, if the government makes cuts in public spending, it’s the poor,  many of whom are single parents and pensioners, who will suffer most.  They’ll suffer most because they do not have reserve capacity and so they desperately need the extra that benefits provide.   The rich have got their own private sources of funds and while they might miss out on a foreign holiday or delay buying a new car, they will not experience real hardship.  

Last night’s Any questions was broadcast from Sheffield High School on the borders of Nick Clegg’s constituency.  The panel agreed that Sheffield, which is still recovering from the collapse of steel and mining industries in the eighties, will suffer more than most cities from the cuts.   Fourteen miles to the south and west in the picturesque vales of Derbyshire around the Chatsworth Estate, there will be scarce a scratch.  Indeed, this morning as I ran past the Carleton Gate, a notice advertised £1000 reward for information leading to the recovery of a precious African Grey Parrot on long term medication.  It’s a different world down here.  But I still get an embarrassing cheque for winter fuel allowance, free bus travel and reductions on the train!   

I voted for this government.  I wanted to get away from the adversarial bickering of party politics and have a real mature consensus.  I reasoned that there wasn’t much to choose between the parties and when it came down to it.  Surely, men and women of slightly different persuasions would be able to work together for the good of the country.  And that, by and large seems to be happening, but I and millions of others hadn’t quite realised how draconian the cuts might be. 

Just this last week, George Osborne announced that he wanted to cut an extra 4 billion off the welfare budget (over and above the 11 billion planned) by making it much harder for people to remain on unemployment benefit long term,  VAT has been increased, Vince Cable announced that Royal Mail delivery services could be sold off with many thousands of job losses, and front line services in the police may go with £40,000 job losses.   Funding for schools is to be reduced, and unversities do not have the capacity to accept students who would otherwise get in.  This year, even students with four A’s are having to sign on.   And yet, there is no sign of the increased investment that might allow the economy to generate funds and avoid a catastrophic rise in uneployment and poverty.  Such cuts tear at the seams of the social fabric and threaten the release of criminal behaviour and civil unrest.  And yet they’re slashing front line jobs in the police force as well. 

Is this joined up government?  Are ministers talking to each other?  Who’s in charge of publicity anyway?  It doesn’t make sense.     

What does the government expect?  That workers will be phlegmatic about it and say, ‘yes, we’ll do our bit for the country’.  They might have done this 70 years ago with the bombs falling and ‘Winnie’ in charge.   But now?  I fear that  as the cuts go deeper, people will get so angry they will take matters into their own hands.  I fear this oncoming winter of discontent will be every bit as bad as 1979 and Maggie’s no longer in the wings with a rescue package.  Gordon Brown must feel vindicated, although his policy of tax and spend risked economic collapse by driving interest rates up.  

There is a limit to how long government can continue to bleat; ‘It’s the last lot who created the mess.  We’re just trying to clear it up and it’s going to be tough for us all.’  No it’s not; it’s going to be tougher on the poorest among us and the last lot still say they would have done it so differently.  But is that so much Ed Balls?

Catherine was one of those entrancing women, so full of life and fun, a free spirit, brave, sparky, vivacious – the kind of lively, fragile personality who lives on the edge; exciting, impulsive, passionate and very dangerous.  Like a candle in the wind, she was never going to be tied down to the routines of marriage; it would be too boring for her.  But Jules worshipped and adored her.  He couldn’t live without her.  He went to war. She had lovers.  Then Jim, Jules best friend, turned up.   Jules told him how scared he was that Catherine would leave him.  He recognised that Catherine had  eyes for Jim and told him that it was alright for them to have an affair as long as they didn’t leave him.  But their ménage a trois was not entirely happy or honest.  Jim still continued to be in contact with Gilberta, Catherine became bored,  Jim felt jealous of Jules.  There was trouble in paradise.  He left saying that they should have a break.  Catherine was desperate, she wrote to him. 

Some time later, they meet again in Paris.  Jules and Catherine invite Jim to their mill on the Seine.   Jim tells Catherine he is going marry Gilberta.  Catherine produces a revolver and threatens to shoot him.  He wrestles the revolver off her and escapes through the window.  Some time later she calls him.  They all go for a picnic by the river.  Catherine invites Jim to go for a drive with her; she has something to tell him and she invites Jules to watch them.  She then drives the car off a broken bridge into the river, killing them both.  Jules is destroyed.   

So what kind of person is Catherine?  They say she is La Reine.  She has to be obeyed.  Impulsive, controlling, charismatic and sexually provocative, she is the sort of free spirit that has men in her thrall.  Although they might be able to possess  her sexually, they can’t tie her down.  She will always find someone else who is more interesting, more exciting.  What is the point of life if it is not exciting?  Catherine falls in love at the drop of a eyelid, but she cannot love.  She cannot tolerate the day to day living, the routine of it, the struggles. She is too hedonistic, too easily dissatisfied.  She has to have drama.  Like a spoilt child, she needs  attention; it’s her life’s blood.  But if she doesn’t get it, look out, there will be trouble; she will betray, abandon, and is even prepared to kill.   She has a split personality.  She can be delightful and entertaining when it suits her, but she also has a dark, murderous side with  little empathy and no sense of guilt or shame.  She will manipulate and exploit men to achieve power and excitement, but never quite realises how she hurts them.  She never thinks how her behaviour affects Jules or her daughter.  She can’t help it.  It’s the way she is.  Her men either have to worship her or be destroyed.  Jim refuses to play the game and is sacrificed.  Jules has to suffer – forever.

Jeanne Moreau plays Catherine in Truffaut’s 1962 masterpiece of French cinema.

 In the beginning was the word and the word was ACGT – life encoded in combinations of three out of a possible four nucleotides; Adenine, Cytosine, Guanine and Thymidine.  This year is the 10th anniversary of the sequencing of the human genome.  At a stroke, it would appear,  a new perspective on health and disease has opened up.  By comparison of genomes from different individuals, it may be possible to identify the risk of getting disease and, armed with that knowledge, make the necessary changes in diet, lifestyle, and exposure to chemicals that would reduce it.  

But genes encode for proteins, not for diseases.  But we only know about defects in specific proteins in a few rare diseases.  In Duchenne muscular dystrophy, for example, there is a defect in the synthesis of a key protein known as dystrophin.      

Common diseases like irritable bowel syndrome are likely to be the end result of an interaction of a number of factors, each with their own genetic and environmental regulators.  And since IBS overlaps with other diseases as well as anxiety and depression, any genetic component will most probably encode for a protein incorporated in some generic factor involved in visceral sensitivity or emotional reactivity.  In addition, genes may predispose to an illness but only in combination with other genes and changes in the environment brings that tendency out.  For example, environmental change induces growth and connection of nerve cells by regulating gene expression.  And this can affect every system in the body.  It’s all very complicated.  Any advance in knowledge rarely provides simple answers, just a vast array of unforeseen questions.  

Only 1% of the genome encodes for specific proteins, about 20,000 of them – the same number as in a nematode worm.  Ten times as many are regulator genes, that are turned on and off by environmental factors and modify the expression of certain genes.  Anything that changes the expression of transmitters, modulates intracellular machinery, and induces growth and cell division will involve regulator genes.  These then are the targets for treatment and prevention.  The remaining 90% of the genome is thought to be junk, DNA fragments, stuff left by some viruses.  Scientists have found no use for it as yet.  Genetics, like human life, is a bit of a mess, not unlike the hard drive of your computer, which contains bits of everything you’ve deleted or copied. 

So the sequencing of the human genome hasn’t resulted in the dramatic breakthroughs that were expected.  Part of the problem is that it takes a long time to sequence the genome from a single individual and everybody’s genome is different.  At the moment, gene sequencing is rather like tearing a book up into fragments of page,  sequencing these and then putting them together again, but with new methods of sequencing coming on stream, things will be much quicker.  In five years time, the cost of sequencing somebody’s genome will be as little as £1000 and we will have a much better handle on the nature and function of the regular genes.  Then comparison of genomes from people with IBS will be feasible.  But will we be any closer to finding a cause  …… or an answer?

The carers leave notes for each other on the wall above the work surface in her kitchen.  The one this morning read,  ‘If the district nurse or any member of the family ask you to help them move Doris, you must say NO!’ 

I went through to the bedroom.  Mum was half lying, half sitting on pillows, wild eyed, without teeth, without hearing aids or glasses.  I was shocked.  I put her teeth and hearing aids in, put her glasses on and asked Rosina to help me get her up.  She looked scared and refused.  ‘I’m not allowed.’  So I manoeuvred mum out of bed onto the wheelchair and wheeled her into the sitting room and danced with her onto the sofa,  where we settled down and thumbed through old photos of Bristol.  When the next carer arrived, I asked if they would change her pad.  Rosina looked doubtful but Joanne said ‘of course.’    Afterwards, as she was going, Rosina told me there was faeces in it and they weren’t allowed to deal with solids. 

Later,  Cheryl rang from the office and told me she had talked to the rapid response dementia team, the district nurse, the physiotherapist and they were all of the opinion that mum had to go into hospital.  ‘It takes two carers to help Doris onto the commode or to change a pad.  And they cannot deal with solid matter’. 

I sighed, ‘Health and safety.’ 

‘Nick you would not believe how many regulations there are these days.’ 

‘I would, Cheryl, I would.  But the bottom line is that if mum goes into hospital, she will die, and I don’t want her to go like that.’ 

I had visions of her waiting around behind a curtain in Casualty for hours and then being going  to a crowded and noisy admissions ward.  So I announced: ‘Why don’t I be on call, Cheryl.  I can call in twice a day to lift her.’  

‘But, Nick, you will need to be in all the time –  even through the night.  You will not get any sleep.  And how are you going to deal with her if she is incontinent of faeces?’

‘Well, I will just have to be less squeamish.  Can’t we at least try it?’ 

Mum had rallied with me there that afternoon and I didn’t want to abandon her now.

‘No Nick, I really think we have come to the end of the line.’

It had all started after the fall.  The carer had left her alone in the bathroom and gone into the kitchen to make breakfast when she heard a crash.  The doctor decided she hadn’t broken anything, but thought she had a chest infection.  He prescribed oral morphine, which I withheld because I felt it would hasten a slide into hospital. 

But now there seemed no alternative, so I telephoned the GP and arranged for mum to be admitted to a private hospital over the weekend.  Four hours later and the ambulance still hadn’t arrived.  ‘Oh, it’s Friday night and they will be out on 999 calls.’  Mum was exhausted and sinking, so I dialled  999. 

‘Oh no, squire’, said the paramedic, who was built like a rugby player.  ‘Our rules are we have to take her to casualty at the Northern General and then they can take her to St Benedict’s after that.’ 

‘But she’s already got a bed in St Benedict’s.’ 

Eventually he agreed as a favour, but explained how much trouble he would get into if his supervisors knew.  ‘It’s not me squire.  It’s the regulations. You’ve just got to be so careful these days. But she’ll like it here.  They’ve got shower gel!    

St Benedict’s was quiet and peaceful.  Mum settled into a comfortable bed and went to sleep. 

The next day, they phoned me at 8.30am and requested a deposit of £2500.  I gave my credit card details and then asked to be put through to the ward. I was connected to the consultant, who explained with great grace that they had taken an Xray and would begin to mobilise her if there was not a fracture. 

But when I arrived, she was fast asleep and unresponsive.   They had not got her out of bed.  She had been incontinent overnight and she was not swallowing water.  

I talked to the sister. ‘We’re a busy ward.  There are surgical patients and children.  Your mum needs a lot of attention and it’s the weekend. I don’t have the staff.’ 

Can nobody help care for mum?  I have encouraged them to put up a drip and give IV fluids, they have catheterised her.  I know when meal times are and will go and try to get some of that delicious cottage pie down her. 

I suspect their attitude is to let her die with dignity.  That’s fine, but although she is 94,  mum’s heart is healthy and she is physically quite strong.  She needs the kind of 24 hour one on one attention the carers were giving her at home, but she will never get that in hospital.    In the meantime, they give her lovely food but she can’t feed herself,  they provide drink but she won’t drink it,  they prescribe mobilisation but the physio looks after the whole ward and doesn’t have the time to get her up on her feet and mum is too frightened. 

She’s now been in St Benedict’s for three days and there’s a change.  It’s like she has lost hold of her life.  When I arrived yesterday, she was slumped in a chair, desperate, pleading, ‘Oh please, oh, please Nick, pulling at the sheets on the bed, plucking at her drip, trying to sit up.  I put her hearing aid in and tried to communicate but when she responded, it was with half a sentence.  ‘I want to go …. Get me out ….. Nurses…… Toilet’ .   She recognised me, stared at me desperately before her eyes seemed to cloud and look away. 

I phoned the consultant.  ‘It will be a long haul to get her back to where she was before she came in, if she ever gets back.  Over the next few days, we will get her over the infection and try to encourage her to feed herself and walk, but I suspect this will take more time than we have got.   You will need to get her in to a nursing home.  

I guess mum had been on the brink for some time,  kept going by the constant round the clock attention of her carers.  It would only take a moment’s neglect; a fall plus the rigid application of  regulations and she was suddenly in a place where they couldn’t help.   I sense her terror.  I hold her and she quietens a little but as soon as I let go, she’s back in her own version of hell.   And what now?  She certainly can’t go back.  She will go to a nursing home.  They will keep her body alive , they will feed her, give her drinks, turn her, manage pressure sores.  I can only pray that her mind has  long gone by then,  she has released her fierce grip on life and resigned to oblivion.  

People say that the British have the best care system in the world.  It’s not true.  The boost in NHS funds may have enhanced the efficiency of health provision, but it has not improved care.  Care requires flexibility and compassion.  It takes human understanding to know how to work within the rules to provide what a patient needs.  All too often regulations lead to restriction and a withholding of care.    

Next Page »