Sunday, 31 August 2008

Twisted Fire Starter

Jim's bedroom is bleak. The hospital bed is marooned in the middle of the pock marked linoleum which is a testament to a thousand dropped fag ends before he became too shaky to attempt smoking in bed. He wont have the curtains open, afraid that people will see him because he finds his life desperate, his body embarrassing. There are no pictures on the walls, no personal touches to say who he is, just a wardrobe filled with the tracksuit bottoms and t shirts that the carers can put on him without too much discomfort and a television in the corner, constantly tuned to comedy gold channels. We care for him to a backing track of Gerry and Margo and Stephen Fry, canned laughter and scripted applause.
His speech is distorted by the illness, he has a verbal tic that makes him repeat everything three times, this adds flavour to the insulting nicknames he has for us all. He grimaces at each carer as they bustle in with a cheerful greeting and spits out the epithet he has bestowed "dyke, it's the dyke, dyke" or "pikey, pikey, it's pikey". He complains and grumbles throughout the care, saying we are too rough, hanging on to his filthy trackie bottoms with convulsing fingers because he is ashamed of his shrivelled legs, calling us perverts if we look at his genitals as we wash them. We ought to dislike him but that is far from the case. The fact is, Jim pretends to be something he is not. He may be insulting and grumpy but his words are belied by the look in his eyes, by the occasional grin he cant hide and by the wry comments that can make you hoot with laughter when you least expect it. Jim is a sweetheart but he would eat his own liver with a spoon before he would admit it.
There is much talk in social care about quality of life, dignity and choice. These high ideals are the stuff of the politician's rhetoric, of white papers and manifestos, the reality is reduced to it's barest components for people like Jim. "What has he got at the end of the day" as Dire Straits asked in a song whose tone was sufficiently jaded and world weary to make a social worker proud. He has his comedy shows, he has the pleasure of insulting his carers with a twinkle in his eye and he has his cigarettes....and there's the rub. Jim can't smoke in bed any more, one forest fire too many on his fleece top and he was banned for his own safety and for the peace of mind of the neighbours. Jim can't walk. His only means of getting from his gray sheeted bed is via a hoist operated by two carers, four times each day. These calls are to wash him, to change his pads and empty his bag and to try to persuade him to eat and to drink. To Jim, these calls are fag breaks, a desperately longed for, clock watchingly ached for opportunity to feed the nicotine monster, to reclaim something of the wise cracking lorry driver he used to be. As soon as the door opens, long before the sling is slid beneath him and he is hoisted into his chair, he starts saying "hurry up, hurry, hurry, fag, fag, wanna fag" Only now everything has changed.
In April last year the smoking ban was introduced. The full joyful implications of this legislation on a service whose employees use their own vehicles for work is for another post, for Jim the legislation was a potential disaster. The thing is that the moment a carer sets foot in Jim's house it becomes his/her place of work and therefore a smoke free zone. If I fail to comply with this rule I stand to be fined several thousand pounds and potentially sued by the staff member for several thousand more. We get around this in most cases by getting the customers to sign an agreement saying they and other members of their household will refrain from smoking when the carer is present and for half an hour before each visit. So far nobody has refused to sign and the day somebody does is one of those scenarios that has me lying awake at 3am wondering why I didn't become something less problematic, like a politician with a penchant for recreating the nanny state of his over privileged childhood. Anyway, back to Jim. He can't smoke unless he is out of bed. He can't get out of bed without his carers. He can't smoke when his carers are present. Smoking is all that gives his life even a small punctuation point of pleasure. Bugger. There's one scenario the smug bureaucrats never thought of.... So what do we do? Do we tell Jim his human rights are less valid than those of his carers? Do we tell the carers their human rights are suspended when they visit Jim? What we do is a masterpiece of side stepping the issue - we fasten the seat belt that holds Jim vaguely upright in his chair, we light the blue touch paper, or at any right the Silk Cut King Size, and we retire to stand in the garden - viewing Jim through the conservatory window to make sure he doesn't choke or drop his fag and torch himself and his surroundings. It's ridiculous, it's fudging the issue and it's only made slightly more bearable by the wicked smile Jim cannot completely hide as he contemplates us through a blue haze of smoke and misery when the rain is running down the back of our necks........