The Long Vigil

I've been lying awake fretting that it's only the end of July. I have never known such a long year, not since I was a child, wanting to be older than I was and seemingly stuck in a wet summer vacation without end. Wet, wet, wet. While I was out on the allotment in a break between showers yesterday, taking photographs for a competition with the theme 'summer's plenty', I saw the first signs of rot. The tomatoes are blighted and the onions I strewed about to confuse the cabbage butterflies have gone to mush.

The reason the year is long is my mother. She's spent most of the time in hospital in three long stints and nothing makes time stretch like repetitive activity, and there's nothing quite so repetitive as parking the car and walking the corridors of the JR hospital on a daily visit to someone who usually does not know you are there. I occupied myself getting angry about things, and there was plenty of scope for that. She came home again, perhaps for the last time, Monday before last. We had had four lessons in hoisting at the hospital but by the second day of her return she was deemed doubly incontinent and bed-ridden, and by the third day I was sending a stool off for analysis as the horrible truth dawned, that she had been returned to us - knowingly - with a renewed attack of c. difficile.

Since then we've got ourselves into a routine of watching and waiting. At first David and I took turns in sleeping. He'd stay up until 3 at which point we'd swop watches. But we've learnt that when my mother screams, wails or calls for help, there's nothing any human can do so we turned the baby monitor off and learned to sleep through it all. Until now. It's 3am and I'm up for some unaccountable reason. No one is calling but my soul. Or is it my conscience?

'Vigil' is Latin for 'awake'. According to the dictionary it means 'a period of staying awake during the time usually spent asleep, especially to keep watch or pray.' It's that latter part that's important, because my final clause of that definition is too often, 'especially to sit with your head in your hands feeling sorry for yourself.'

I said something to one of the carers yesterday about waiting until Mum died and she looked shocked at my candour, but why pretend? This brittle, bruised, tiny little form who, every day, looks more and more like the figure of God in Philip Pullman's trilogy, cannot survive much longer. It is not possible. The week they called us in to say our final goodbyes, back in May, was the week my cat died, a seemingly robust little creature not yet two years old. She just laid under a bush and died.

Do I wish my mother dead? That is the shocking thought I prick myself with every day. But why shouldn't I? After all, she wishes herself dead. If she was my most favourite, best loved dog, I'd have put her down long ago to spare her any further agony. Her pain is physical, of course, but more it is spiritual, an existential misery that bursts out in screams of hair-tearing frustration. She has very little hair left.

Meanwhile I sit and wait, no longer sure what I shall feel when the wait is over. I try and pray but get taken with a fit of embarrasment before I can reach the end of any sentence. I am more vocal with God when I take him to task for his design of the human bladder. 'What a mess that is and you think you're so high and mighty, the great designer!' At Art in Action a sculptor from India gave me a tiny figure of Ganesha. It was a cheap piece of tinsel that made the aesthete in me recoil. I mean, really, do they have crackers at Diwali, and did he find this in one of them? But the little plastic God painted silver sits on our dining room table and each time I spot him, I ask Ganesh to remove all obstacles, for that is what he is god of, the imposition and the removal of obstacles. It's easier, you see, to pray to a little piece of plastic. It makes you forget, momentarily, that the person you are praying to is your own Self.

I don't know why, in the great scheme of things, that my mother was revived after her heart attack. Has she learned anything since of use to her in her soul's journey? It seems impossible. But it happened, the resuscitation. And now, thanks to a living will which is rolled up in a bottle and kept in the fridge (don't ask me why), it won't happen again.

Even so, even so, as I sit here awake in the middle of the night, I am ambivalent about the right to die, the hot topic of the moment. I often say to friends that, if the thought of the journey was not so horrendous, I'd have taken Mum to Zurich before now. I say that my views have changed. Throughout her life, Mum has believed in euthanasia - and she was never one to hold an opinion about anything other than 'it's all wrong!'. In her 80s she actually spoke to me directly about it. When the time came, would I help her? I said no, I wouldn't. I had principles I did not wish to contravene. Anally-retentive bigot or what? What do I know about anything? Where are my principles now? But if it came to it, here, in England, could I give the nod? I don't know.

This is my position at 3am in the morning at the end of July 2009. I am glad there is a debate. I am glad the law may become clearer if not actually change. I have great respect for the law. Many principles I've held in the past have been overtaken by the law and we always seem to be the better for it. [This is a slight divergence, but I've just finished reading Adam Nicolson's excellent book on the translation of the King James Bible, God's Secretaries, and he makes the point at the end that the language of that book, so beautiful it touches on the miraculous, is not only the product of a committe, but is also the product of men who didn't think twice about martyring their opponents. Nicolson says such language, such religiosity, is beyond us now, who live in a society where tolerance is practised although not always achieved. So what we would rather have, poetry or sweetness of life? I can't help but think that, as time passes and views change, we get more Christian, not less]. So in a cowardly fashion I shall sit back, wait for the law to change and then have no trouble in following it afterwards.

There is a school of thought, you see, which I've always subscribed to, which says that life is sacred and that every moment of it counts towards the next one. I do believe that. But what we're faced with here, as we watch and wait, is a beautiful theory pitted against an agonising reality. Those men who, in battle, put their guns to their horses's heads were not murderers - they were victims of love, the love that will do the worst to save the beloved any more pain. This, too, I think is in the great scheme of things and something our principles need to accommodate.

THIS WAY MADNESS LIES

What was the point of getting her hair done? By 6pm she had pulled on it so much all the curl had gone and it's back to lank strands. She pulls on her hair and cries out. She claws at her forehead and cries out. She tries to readjust herself in the uncomfortable seat and cries out. 'I want to go HOME!'

My darling mother is now deranged. I will live forever with the guilt of not having stuck to my guns when, three weeks ago, I phoned the consultant to have her moved to the Witney hospital where they have dormitory wards. He talked me out of it.

Science and scientists - so convinced of themselves and that everything they utter is the truth. They do not know best all the time. They do not. Trust your instincts. I certainly should have trusted mine.

Now I can hardly bear what is going on and if anyone asks me how mother is I sidle quickly away like a crab because I do not, cannot talk about it anymore. I wait now for her to go to the home she cries for, the place where there is no pain, the place we came from.

An Infirmary for the Infirm

I learnt it on Time Team this week - an infirmary was where the old and sick went for simple care. Perhaps that's what the Radcliffe Infirmary was, the old hospital in Jericho pulled down for development a year or so ago. Certainly it's where geratology used to be. Now that it's in the John Radcliffe, everything has changed because this industrial-sized hospital on its hill overlooking Oxford is 'acute'. I'm not sure of all the ins and outs of that, only that it means another set of rules for the staff of Adams Ward to work by which happen to be irrelevant at best, irrational at worst. And that is why they are unhappy.

The wheels grind slowly. After a week or so complaining about Mum's lost glasses, someone asked me the name of the optician yesterday. Who knows - perhaps Mum will get her hair done today, for the first time since admission.

Tomorrow I've been called in to see the Matron. At least they want to know what I have to say.

NO WAY TO DIE

[I wrote this to send to a newspaper but then decided not to. I don't want a big fuss, and there's always another side to the story. This just happens to be mine, and this is the right place for it.]

She is locked up and in solitary confinement, half-starved and neglected, left to wet herself. She is ninety-three years old. Where? In the John Radcliffe hospital, Oxford.

My mother was taken in in February because of kidney retention. She had to go – there was no other option, even though we knew what to expect. For, at that age, once you are in hospital it is very difficult to get out again. There has to be a ‘care-package’ in place and, for that to happen, Social Services have to find an agency who can supply carers. Apparently there are staff shortages amongst carers: it is a job which takes a special person. One who can care. One who can wipe the bottom of another. These people are amazing, and they are on the minimum wage. A 20% increase in wages would give them an extra pound an hour. So it’s not difficult to understand why few people can be found to fill the vacancies. Meanwhile, the elderly lie waiting in hospital gridlocking the system.

The Adams Ward at the John Radcliffe opened at the end of 2008 to great fanfares. Here it is: geritology of the future. No longer will the aged be kept in dormitory wards, surrounded by raving lunatics, kleptomaniacs and MRSA bugs. Now they will have dignity and privacy. Now they will have single rooms. The Adams Ward is the future. Our future. Yours and mine.

The main door into the ward locks automatically and you have to ring a bell to enter. This requires someone on the inside to press a button to release the lock. Do they then come to meet you, greet you, show you where your relative is? No. By the time you reach the desk, they have disappeared. Or they are still there, dog-faced and apparently finding your arrival incomprehensible. If you are really persistent, they will begin to speak to you but it seems their smiles were surgically removed when they took the job.

I find my mother without assistance. I know her voice, and she is calling for help. ‘Help me someone! Please help me!’ In a matter of days of being transferred to the new ward, she has become a pest and a nuisance. She is treated as if that is her fault and staff, when they finally arrive to my pressing of the buzzer, breeze in with a snappy, ‘What is it now?’ What are they like when I’m not there?

She clutches my hand. ‘Get me out of here. Please get me out! Please! What have I done to deserve this?’

What indeed. Usually you have to face a trial by jury before society treats you this way.

The ward sister is truly shocked when, a week later, I begin to complain. What is there to complain about? Single rooms? But they are wonderful, just what everybody wants, and all new builds will have them.

Now three-quarters of me agrees with this. If I were there, I’d love a room to myself. I could read books, speak on the phone to friends, watch that extortionately expensive TV that hangs like a periscope and perhaps even discover computer gaming. That is, if I were well enough. If you are not well enough, or too old and frail, then all day and every day for at least twelve hours, you are on your own with your own thoughts, and that really is not healthy. The ward sister says, but who wouldn’t want a single room? Who would want to be in a ward shared with raving lunatics, kleptomaniacs and MSRA? I say – why is that the alternative? Why can’t we have these rooms – which are in fact lovely with their ensuite showers and toilets – for two, or three, even four? No, she says, everyone wants their privacy and dignity. In an institution that cannot hear what anyone says, I find myself bursting into tears, because I do not want to die like this, and I do not want my mother to die like this.

On my mother’s medical notes, it says she is incontinent. Three times on my almost daily visits I’ve found the buzzer left out of reach. No one along the corridor can hear her frail calls from inside her room. And I’ve been there, used the buzzer myself, and waited 20 minutes for it to be answered. Incontinent? No, she is not. Neither is she suffering ‘macular degeneration’ as the notes state. She was already half-blind when she arrived and had been for many years. But her glasses are lost, switched with someone else’s, and now she can’t see out of the window, the only distraction she has in a long day, apart from flying visits from people with injections, commodes or inedible food.

Sybil was one of the most popular people this planet has known. Non-judgemental, forgiving, she befriended everyone and anybody. She has a smile which wins friends (even amongst raving lunatics and kleptomaniacs). She becomes radiant when meeting anyone whether for the first or the millionth time. In her prime, while still at work, she would receive around one hundred cards on her birthday. She’s outlived her family and most of her friends. Of those that survive, only one has been to see her in the hospital. Hospitals have dreadful reputations and are best avoided by the well. We all say it. So Sybil – the wonderful mother, the much-loved aunt and friend to so many – lies abandoned and shrivelling in misery. Abject misery. Misery of the kind to break hardened criminals.

‘What have I done to deserve this?’ she whimpers, clutching my hand.

‘Nothing, Mum, absolutely nothing.’

The human being is a social animal. We live in herds. A few of us seek solitude to commune with nature or God, but for most, we live in groups – families, communities, societies. Something happens to us when we are in company: there is some subtle, molecular exchange between us. In some curious way, we nourish each other just by our presence. Once, when I lived and worked alone in Hackney, I discovered that all I had to do to avoid depression was to go out each day and walk the high street. I didn’t have to speak to anyone to feel better: I just had to walk amongst them. Depression descends quickly on the isolated. For my mother, in her new accommodation, they’ve upped the dosage of her happy pill but it's not working.

Anyone who, like me, grew up in the 1950s will remember Pete Seager’s song, Little Boxes. We all thought it was a protest against the domestic estates being built at the time. As it turns out, it was a prophecy. As we have lived, so shall we die, in little boxes, little boxes, little boxes made of ticky-tacky. And do you know, everyone in the ‘business’ thinks it’s a jolly good thing, even Age Concern.

If we must have this system, let us at least recognise its shortcomings and do our best to ameliorate them. Visitors should be welcomed and encouraged. Do doors have to be locked? Do visiting times really have to be restricted to late afternoons? And couldn’t staff be sent to Asda training centres to learn how to smile, say hello and ask simple questions, such as ‘how are you today?’ or ‘can I help?’ They may find that such small, effortless exchanges are all it takes to make themselves – as well as their patients and visitors – happy.



Sybil, Christmas 2008, at home where she lives with her daughter and son-in-law.