Somehow we hold the fort

Carers Week, supporting the six million unsung heroes in Britain who care for a relative, friend, partner or for a child with a disability, starts today.
Here, a Shropshire carer tells his powerful and moving story. He has asked not to be identified...

I never did tell you that my wife is married to Clarke Gable, did I?

No, of course not. It's not an easy thing to casually slip into a conversation.
It's not as though there's anything sordid or illegal about it, even if I don't share the name, the fame or the notorious ears.

It's just that she saw Gone With The Wind 30 odd years ago and opted out of the mundane existence of middle class wife and mother.

Much of the time, it doesn't seem to make a lot of difference.

She does, mostly, acknowledge that she is married to me in the everyday sense and usually quite dotes on our children, now long grown and flown, but the balance between realities changes constantly.

When we're excluded from the lounge or patio while she takes tea with him we know where we are.

The real problems arise when we are not aware of any conflict.
It is impossible to predict such episodes as the symptoms can be subtle and their significance hard to detect.
Video boxes and magazines are not reliable indicators.
The most innocuous event or comment can provoke an unexpected reaction and her anger can be quite awesome if 'they' are interrupted.

Although she sometimes apologises, these events are much harder for us to cope with than for her - she just seems to flick a switch.

Fantasies are part of being human, we all have them but most of us can recognise them for what they are and divorce them from reality - my wife often can't and the stress, on her as well as us, is enormous.

Her delusions manifest themselves in very strange ways, some more subtle than others but no less perplexing.

Whatever life may be, it's never boring, there's always something going on.
Sometimes it's easily explicable, such as the time that someone was "poisoning the water".

It had been cut off for a while after a pipe burst and was brown, so that was understandable.

Then things began to get awkward; she refused to drink the stuff so I had to buy 'pop'.

Then she became suspicious of that and I had to buy it from different stores, then different towns.

Eventually, I had to drive her to her chosen store in her chosen town and we bought 30 litres.

'They', you see, would be spying on her and not ready for her first visit, but might be for a second.

Two days later, water was OK.

Still, it wasn't a total waste; after all, how often do you get the chance to taste gravy made with boiled orangeade?

I never have fathomed the time our domestic appliances were possessed by the Devil (if it had been the finance company they'd have been re-possessed and I could have understood that - poverty has never been far away).

Nor when she hosted a tea party to mediate between Satan and the Archbishop of Canterbury.

Then there are the things that you desperately want to forget.
Yes, she has attacked me and she has tried to kill me, not as often as popular misconception might suggest but certainly enough to keep me on my toes.

You mustn't think that she's always off on another planet, she's not. She really does try very hard to be a good wife and mother, though it's not always clear whose good wife she's trying to be. This makes it very hard for those of us who love her.

Some of us remember the vivacious, intelligent young woman who captured my heart so many years ago, and grieve for and, sometimes, with her.
Her propensity for exploding in anger or being consumed with grief is familiar; you just have to try to ride out the storm.

Whether it lasts minutes or weeks and, however intense it seems at the time it will, eventually, pass.

It is also common for her to agree or even suggest something and not tell anyone that she's changed her mind until whatever it was should have started.

This leaves everyone floundering in her wake but we still have to behave as she does, as though nothing had happened.

It does make it nearly impossible to get any semblance of organisation into your life but that's difficult anyway because you're so tired that you forget half the things you should be doing.

Among the more reliable signs that my wife's health is deteriorating is that she becomes more active and, heartrendingly, happier.

Unfortunately, she also becomes far less predictable and sleep becomes an even scarcer commodity.

Will she set the kitchen alight, accuse the neighbours of espionage or take an
overdose? You never know.

All that you do know is that, until things spiral so out of control that even the psychiatrists take note, you are on your own.

My wife, you see, suffers from schizophrenia.

As her husband (part time, of course), I always knew that I should take care of my wife, in fact, nearly 40 years ago I promised to do just that, in front of witnesses, too.

Then, when she'd been ill for almost 20 years, someone stuck a label on me - "CARER"! Superman suit Not exactly the Superman suit and phone box I needed but better than nothing, I supposed.

For about a decade, then, I have been a carer, and not just the idiot I thought I was.

What is a carer? Be simplistic and a carer is anyone who cares. Be cynical (and, after 30 years, I am) and a carer is a dogsbody who contributes towards saving the NHS billions every year.

I don't claim to be anything special, there are tens of thousands in similar situations. I'm just a husband and father who has done his paltry best for his family.

What is it like being a carer? Confusing, frustrating, heartbreaking, infuriating, depressing, debilitating, exhausting - amongst other things.
Am I really a carer? Most of the time I seem to be just (and I do mean just) a survivor. I'm someone who 'keeps the lid on', 'picks up the pieces', and 'holds the fort'.

I don't feed or dress or carry, I comfort, cajole and divert. Someone has to take the flak and it mostly seems to be me.

Of course, I also have to 'tell on her' to the doctor when she becomes ill and this certainly doesn't help our relationship.

Often your life is significantly disrupted; you lose contact with, even awareness of, the outside world.

Consequently, you can easily lose the confidence and ability to interact with other people.

This can engender deep resentment (often followed by guilt).
It is far too easy to become focussed inwards to the point at which you resent and mistrust 'interference' and reject offers of help.

It is also easy to see yourself as the martyr, to become obsessed with your own troubles even to the extent of displacing the 'caree' with the concept of care itself as the central factor of your life.

You lose your own identity; you cannot contemplate a different world and caring becomes the excuse for your own existence.

You come to dread their loss, not for any consideration of them but for the effect that it will have on you. In many cases, of course, such loss is inevitable. It's scary.

For many more years than I care to remember, I have been assured that help is always at hand. In theory, it is.

We have never called for help until we really needed it. Almost without exception, however extreme our circumstances, we have had to hold the fort, maybe for hours, usually days and once for several weeks.

It's not that I think that they don't care, I don't think they actually understand, though.

For them it's a job, they can put their coats on at five o'clock or whatever and that's it for another day, they have their careers to consider, administration, paperwork, training, meetings and all the rest.

They could justly claim to be overworked and under-funded but it doesn't help when the frayed ends of your tether are being knotted back together yet again.
When they finally turn up, sometimes inappropriately mob-handed, they generally take over.

However often you are assured that they value your input (lovely phrase, that) it never seems to influence them when it comes to the crunch.

You may wonder what relevance all this has to you and I have to admit that it may have none at all but around one in five of us will experience a mental health problem sufficiently serious to need formal treatment.

It may be 'just' mild depression or it may be chronic schizophrenia, just look at the four people nearest to you; who might you have to care for, or who might have to care for you?"

For more information about Carers Week telephone 0207 566 7608 or visit www.carersweek.org