WE ARE sitting at a table in the kitchen talking about what it is like to look after Derek. He keeps interrupting, saying strings of words that don't mean anything. Mostly we keep talking through these outbursts, but sometimes they make a kind of sense.

For instance, when Diane Munday mentions that she has taken away his car, Derek, 62, becomes angry. He stands up. He is saying things to no one: jumbled phrases clearly charged with emotion. Mrs Munday explains that the car was removed from her husband a year ago, but he still reacts like this when something reminds him of it. 'He took a hammer to mine when he found out,' she adds.

Derek Munday is a stroke victim. In fact, he is a double stroke victim. The first time it happened he suffered partial paralysis and some loss of speech; the second time, a different part of the brain was affected and the result was the mental disability we see now.

Diane, who is 61, has been looking after Derek for nine years now. She has fought isolation, bureaucracy and disability itself and if you ask where all this heroism (which it is) has got her, she says: 'It is like having a young child to look after, a truculent, difficult, large child. But at least with a child you know that there is an end in sight. I see no end.' It has got her nowhere, you see.

Step back to 1984. Derek had taken early retirement but was busy doing management consultancy work as well as teaching children to sail - something he loved to do. He and Diane were good company for each other.

Mrs Munday was working from home as press officer for a national charity. She was writing and broadcasting, supporting various causes and serving on the local magistrates' bench near their home in the village of Wheathampstead, Hertfordshire. They were financially secure, their three boys were grown up. 'We were into a new phase of our lives,' she says, 'and we were looking forward to it very much.'

Then, in April 1984, their carefully constructed future blew up in their faces in a moment. They were here, in this kitchen. Mrs Munday got up to go and have a bath, and hearing a crash turned round to see that Derek had fallen to the floor, his face contorted. She says: 'I thought he was dead,' and you have to bear in mind that these details still form a part of the present. It is always in the back of her mind: the time her husband became someone else.

In fact he might have died then because he was choking on his own tongue, but she put her hand into his throat and held it clear. Then they were in St Albans Hospital, and it was from this point that her single-minded attitude towards Derek's well-being began to take shape.

First pointers were small. Staff wanted her to leave. She refused. They insisted. 'They were extremely unpleasant,' she recalls. But she stayed anyway.

That night Derek was rushed to another hospital, and within 24 hours Mrs Munday was told that she must sign a form permitting a brain operation to remove a blood clot, 'or your husband will be dead within half an hour'.

She refused. This is difficult for most of us to follow, because we are tutored to agree with doctors. What she demanded to know, however, was this single, important point: was there a risk that the operation itself would leave her husband's brain even more damaged?

She speaks fiercely about this now, without any sense of doubt. She says: 'Both Derek and I were in favour of voluntary euthanasia. He had worked with severely handicapped people and had told me that he would not want to live in that condition.' Under intense pressure, with minutes ticking by, she insisted on meeting the registrar, who did not reassure her. She refused to sign. She says: 'I told them to bring him up from theatre.'

She was drawn into deeper responsibility for her husband's life as these first roots of involvement took hold. Derek did not die. Drugs were used instead of surgery and Mrs Munday stayed at his bedside for 18 hours, shouting: 'Derek . . . look up . . . look at me . . .' every 15 minutes, as nurses carried out reaction tests to which, gradually, he responded.

Now to a third hospital for long-term care. 'He was totally paralysed on the left, unable to swallow, unable to empty his bladder, able to speak but with huge gaps and lapses in memory,' she says. 'The doctors had told me he would never move his left side again. I remember thinking: oh yeah?'

At nine every morning she arranged his bed so that she was on his left; she fed him from that side, handed him things, always from the left, trying to force a response. She manipulated his fingers, his leg; when she realised that the hospital did not have a spare wheelchair she threatened to write to her MP, and was soon wheeling Derek around the grounds.

She went on like this for three months, and then one morning found him sobbing alone in a cold bath, and discharged him. It was a momentous decision, a dramatic switch from imperfect establishment control to the chilling alternative of personal responsibility. Yet if you ask why she did it, she simply says: 'I saw the authorities weren't competent.'

She also says she is 'a fairly single- minded person. Obstinate, I suppose. Bloody-minded.' But what all this adds up to is someone who was prepared to become a permanent prisoner of her own conscience.

The full details of Diane Munday's efforts to make her husband 'normal' again are too tedious to record. Living it must have been truly dreadful. Here is a taste. She bought a large mirror to which she attached a vertical string, using plasticine. Every time her husband sat down she put it up in front of him so that he could align his body with the string to overcome a slump to the left. At every meal for 18 months she recited a litany that stopped him dribbling food: 'I used to say: 'Put your food in your mouth, shut your mouth, put the food to the right-hand side, put your head back, swallow' . . .'

After two months she got rid of the wheelchair, forcing him to walk. She negotiated extra physiotherapy classes which she tape-recorded and played back to Derek night after night.

It sounds numbing. She agrees, but it worked. Within three years Derek had shown remarkable improvement. 'With some adaptations he could function 90 per cent normally,' she says.

Then he had another stroke.

On 8 November 1991 came another split-second of devastating change. Derek became temporarily blind, deaf, violent and raging. He spent a week in hospital, and though unable to speak, the word 'home' kept reappearing in the apparent gibberish he scrawled on endless sheets of notepaper, until Mrs Munday discharged him and everything began all over again.

We are back in the kitchen now, talking about what life is like looking after Derek. There is no new physical legacy from the second stroke, but his mind is severely affected and there is no doubt that Mrs Munday resents this; no doubt, either, that it seems worse because of that initial, bitter success.

'I feel bereft,' she says. 'I think I want him to be completely crazy or completely normal. I think I am basically a selfish person. I looked forward to my life, to doing my own thing.

'I don't find it easy bringing up a child, I resent it, the curtailment of my freedom. I saw a door open when my children left home and it was pushed wider when Derek retired. The first stroke slammed it shut and we were just getting back to normality when it slammed shut again, for ever.

'It's worse than bereavement because if someone dies you lose them and are free to get on with your own life. This way my husband has died but I am still looking after someone.'

This is offered without much emotion, and sounds rather sharper for that.

Derek cannot express himself, either verbally or on paper, but he can follow short, written instructions and can sometimes respond to a single spoken word. He can get about, and there is even one pub he knows the way to and will visit for lunch.

He has no concept of time, however, and wakes Diane at least three nights a week - at first it was every night. Recently he left the house at 3am to go and see the dentist - she followed and persuaded him home. There have been rages, days of sudden, intense grief, tears, and shouts of 'death, death'. Whenever he speaks, she has to decide whether it is nonsense or whether there are messages to be deciphered.

After the first stroke Mrs Munday had two adult sons living at home to share some of the caring duties; now they have left home and family support has naturally diminished. The other day she played back an old tape-recording of him in 'normal' days and cried - the only time she has wept since this period of her life began.

It is pointless to suggest that the state might take Derek off her hands because she won't have that either. In fact it is part of her whole reason for agreeing to talk in the first place. Mrs Munday isn't speaking to me because she wants to be pitied, but because she feels that there are gaps in state provision for people like Derek. 'All they could have offered me,' she points out, 'was a Victorian mental hospital which had been run down over 10 years and is being closed now anyway.'

The infuriating thing for her is that home-care support is also far from perfect. She is angry at the begrudging nature of the allowances she receives from the state: it took a year, for instance, to win full attendance allowance for looking after Derek; another year to reclaim pounds 27 spent on putting in a handrail for the stairs. The current payment is pounds 99.01 weekly (the extra penny seems insensitive) which includes invalidity benefit plus a 'daytime' allowance which recognises that Derek needs care during daylight hours.

But Derek also needs care at night, a fact which has just been acknowledged after 12 months of assessment, which means that Mrs Munday will eventually be paid an extra pounds 14.40 - plus a mobility payment of pounds 11.55: total, pounds 124.96. It would cost the state several hundred pounds a week if he were to be cared for in a hospital.

The benefits system, she says, is difficult to follow, even for the professional classes. It also seems biased in favour of saving state money. When in 1986 she voluntarily gave up the night-time allowance as Derek's condition improved, the benefits office cut off all payments for three months while it investigated the anomaly of someone willingly stripping herself of entitlement. She contrasts this, somewhat bitterly, with the year she has just spent re- establishing the same payment.

Her private investments, meanwhile, had been arranged on a joint-signature basis, which meant months spent teaching Derek to write his name before she could gain access to that money.

She also pleads for the right kind of respite care, so that people in her position can simply have a break. 'I've paid for a retired psychiatric nurse to come in every time I have left Derek,' she says. 'Regular short- or long-term respite services just aren't there for people like Derek - they're geared towards providing sitters a couple of hours a week for elderly people who just stay in an armchair. Arrangements for care in the community are inadequate, yet this is where the Government is putting its whole emphasis.'

These are hard, worrying points, of course, but shadowing them all is the less tangible truth that people in Diane Munday's position are stuck with an underlying sense of unfairness that can never be entirely removed, no matter how good the support they receive. It isn't their fault, that's the thing. And it doesn't do them any good at all that we sympathise.

When it is time to leave I walk out to the car to put my bag away before returning to say a final goodbye. In those few seconds, Derek locks me out. It is almost funny, but laughter would be unthinkable so I ring the doorbell, say goodbye, shake hands with Derek, and drive away.

(Photograph omitted)

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