How Helen copes with her husband's pre-senile dementia

Hindsight is a wonderful thing, says Helen Beaumont. "With it, I might have known something was wrong with Clive a lot sooner." Helen lives alone with her two children. Clive, her husband of 26 years, an Army officer and Oxford graduate in biochemistry, does not live with the family.

Instead, he exists - for his condition, Pick's disease, does not constitute life as most of us know it - looking physically well but mentally vacant in a hospital assessment ward. He is just 50 and was a mere 42 when he started to become forgetful.

The Beaumonts have two young children. They were only one and two when Daddy first started to "act strangely".

The couple had moved back to England from Dubai, where Clive was a bomb disposal expert, to start a family. They bought a house in Bayworth, near Boars Hill, Oxford, but once settled in, Clive decided to accept a posting in Salisbury. "It was at the time of the Gulf War and everyone was working very hard. Clive didn't like the job when he got there.

"We had two young children and I suppose all these things put together are stressful, so slight changes in behaviour can be put down to that," said Helen.

"Clive was a man who was normally considerate and reliable. Then he started to do little things that I thought were odd. I'd tell him I was going out and would he look after the children, and he'd forget and book a game of squash instead."

Helen, 47, is aware that behaviour like that is trivial. "I suppose most women would say their husbands had done something similar." But it was the fact that it was so out of character for such a reliable, gentle man.

Things got worse. Clive put in for redundancy from the Army without discussing it with Helen. He applied for more than100 jobs but wouldn't touch the word processor at home, insisting Helen did his paperwork.

"Then he stopped reading the children's bedtime stories and would come home from the shops with nothing on the shopping list but lots of other things, especially ice cream. The freezer was full of it." It was when Clive became obsessed by timekeeping that things got really difficult.

"He would take the children to playgroup and they'd be three-quarters of an hour early. He preferred that to being one minute late.

"The build-up was so slow we almost became accustomed to it. What we didn't know was that Clive was suffering from pre-senile dementia. He stopped reading to the children because he couldn't read, but he wouldn't say so."

Eventually Clive went to a doctor without telling Helen. That was 1992 and the diagnosis of Pick's disease, which attacks the front lobe of the brain, came through at the end of the year.

"It's progressive and incurable. Clive will die. The odd thing was that, while I was crying all over the place, Clive didn't care. His emotions were flat because the disease had already attacked his judgement.

"The children were very accepting. They just knew that Daddy wasn't well. Clive was still at home but he couldn't look after them. He'd take them to school an hour early, forget their lunches and their swimming kit.

"His language faded quite quickly. He lost the ability to read or write. It was a hard time. How I kept sane I don't know. "This was a man who ran marathons, who was active, with a solid intelligence. Soon he was like a small child. He used to follow me around everywhere," said Helen.

Then things started to get very bad. Clive would go off on his bicycle - he lost his driving licence early on - and get lost.

He'd take himself off to a day centre in Abingdon to the Alzheimer's club, but then he couldn't cycle any more and he wouldn't get a lift in a car, so stopped going.

The crunch for Helen came in 1996 when Clive went missing. He'd gone out for a walk, got lost and ended up in Swindon.

"The police rang on a Sunday evening - Clive had gone missing on the Saturday - to ask if I'd come and get him. I had reported him missing and it was dreadful. I knew, with the children as young as they were, that it couldn't go on."

Their eldest daughter is now ten and their son nine. Helen found somewhere for Clive to go on a respite visit. He stayed for three months and enjoyed it because they took him out a lot. Even so, he went missing several times.

"It was a terrible decision. I still love Clive and it hurts so much but I couldn't carry on. It was hard, grieving for the person I'd lost while he was still physically there.

"I'm in limbo. I'm still married and my husband is still alive but Clive is gone. He doesn't recognise us any more."

Helen goes up to three times a week to see Clive. He's been in nursing homes but at the moment is in the Fulbrook Centre at the Churchill Hospital in Oxford. Helen knows the time will come when she'll have to find another nursing home for him.

"Most won't take him because of his age and strength. He's not aggressive but it's hard work keeping a physically active man busy. Respite care is almost an impossibility.

"What he has is usually associated with the elderly. There's such a stigma attached to mental illness," said Helen. The main problem is that there is nowhere for people like Clive. Helen doesn't want him to go into an old people's home: "It's so inappropriate."

The other issue is cost. Helen had to fight hard to get half of Clive's Army pension but has to contribute to his care when he's in a nursing home.

With two young children and a part-time job, money is tight and Helen doesn't know how long she can cope. "I have to stop myself from writing 1989 on cheques. That's what I feel like because the last ten years have been such hell.

"It's impossible to make friends because it's so hard not to talk about the last ten years. People don't want to think about death or illness but if I can't talk about those years, I've got nothing to talk about.

"All I can hope for is that Clive is warm and happy. Now I have to concentrate on the children."

NEW HELP ON OFFER

Helen Beaumont is a committee member for the Clive Project, a special pilot set up in Oxfordshire to help younger people with pre-senile dementia.

The project, launched in April, helps people with the illness to pursue a hobby or interest and regain some of the self-esteem they may have lost.

The project came about after a year-long feasibility study carried out by the Alzheimer's Disease Society in Oxford into dementia in younger people.

There are an estimated 17,000 people in the UK with younger-onset dementia. In Oxfordshire alone there are almost 100 cases.

Although Clive, at 42, was one of the youngest, it has been known to strike people in their twenties. But dementia is seen as an older person's illness and most of the support system which exists is for over-65s. The year-long study for ADS was carried out by Tessa Gutteridge, now services manager for the Clive Project.

"It's a home-based support service which enables a younger person to pursue activities and interests which, because of the dementia, they may no longer have the confidence to do alone," she said.

"It's about increasing self-esteem and independence."

The study, which identified people with early-onset dementia and then spoke to them and their carers, highlighted the need for home-based one-to-one support.

Four part-time workers visit people at home and find out what it is the person wants to do.

It could be anything from helping them choose artist's materials in a specialist shop to trips round museums and art galleries, or even going on a country walk.

"People don't necessarily want to be grouped together. This isn't a sitting service or taking people on outings they may not want to go on. It's about helping the individual do something they want to do. Its very specifically person-centred," said Tessa. Plans for the future include an information pack for newly diagnosed sufferers, who can then get the pack from a GP, other health workers, or social services.

"The diagnosis itself can be devastating but it's often difficult to know where to turn to next. Maybe the Clive Project can help," said Tessa.

For more information telephone 01993 776295.

NO ORDINARY ROCK GROUP

The Shrink are a band with ambition and Roland Moore knows exactly where they are heading, writes NICK EVANS.

"The main item on the agenda is world domination of the record industry. Today the Oxford Mail, tomorrow Q Magazine," said Roland, 42, vocalist and guitarist with the band. Just like thousands of other groups, The Shrink are aiming for success, for their own 15 minutes of fame. But this is no ordinary rock group. These guys are something special. Roland, bass player Hamish McGregor, 46, and vocalist John Child, 45, all suffer from serious mental illness. They formed The Shrink after getting together at The Mill, a day centre in Cowley Road, Oxford, which offers support for people with mental health problems.

With activities ranging from computing to creative writing and, of course, music, The Mill aims to give back some of the decision-making that people with mental illness may have lost through being in hospital or institutions.

The driving force behind the band - and its guitarist - is Andy Walton, 36, assistant co-ordinator and music and arts worker at The Mill. "It all started with people strumming away in the day-room here, doing acoustic sessions, and it took off from there," he said.

The day centre now boasts its own recording studio, with a six-track recording desk and full range of instruments. It is the only place of its kind in the country. And the band is going from strength to strength. They already play a regular monthly slot at the Elm Tree pub in Cowley Road where, joined by drummer Keith O'Connor, owner of the Music Box store, they are building up a base of support.

It doesn't stop there. The quartet have recorded a tape of original songs and there are plans to lay down more tracks for a CD.

"As we approach the Millennium this is an ideal time for us to progress our music," said John.

Roland agrees, saying that now the band are starting to grow they are hopeful of big things.

"One goal is to get a record company interested in us," he said.

However, breaking into the big time is not going to be easy. They are limited to the opening hours of The Mill for their practice sessions and they have been hit by budget cuts. In just over two years, The Mill's music and arts money has been cut from £2,000 to just over £900. With such limited funds, it is difficult for the band to pay for the equipment they need.

"Keith O'Connor has been very supportive, selling us stuff cheap and advertising our gigs, but equipment is very expensive," said Andy.

To try and raise cash, the band will be playing a gig at the East Oxford Community Centre on October 10, World Mental Health Day. Although it is for a serious purpose, the band members are hoping the occasion will be a light-hearted one.

"We want people to come along and enjoy themselves," said Roland. "Our whole ethos is that music should be fun".

Anyone who wants tickets for the gig or is interested in supporting the band should call 01865 721458.

Converted for the new archive on 30 June 2000. Some images and formatting may have been lost in the conversion.