Dementia turned my husband into a wife-beater

Health Editor Barry Nelson meets one carer who has been to hell and back

THE recent damning National Audit Office report into the care of people with dementia came as no surprise to Yvonne. According to the NAO - which keeps an eye on public spending - there is a national crisis in dementia care and not enough is being done to help patients and their carers.

"They should have talked to me first, I would have told them a thing or two," says Yvonne, who lives in the North-East.

Visiting Yvonne in her neat, peaceful home, surrounded by family photographs and sipping tea from her best china, it is difficult to believe what happened here.

Absent from the picture is Colin, her much-loved husband of more than 45 years.

When he died in hospital three years ago - a lost soul unable to recognise his own wife - it was terrible loss for Yvonne and her family. But she also admits that her grief was mingled with relief that her two-year ordeal was finally over.

Colin, who was 75 when he died, was one of the estimated 560,000 people in England who are believed to have dementia at any one time. Happily married to Yvonne for more than four decades, the disease rapidly transformed him from a kind, thoughtful and generous man to a violent, raving and dangerous liability who eventually had to be detained under the Mental Health Act.

Yvonne, now 72, bore the brunt of his rages - verbal and physical - with the minimum of help from the NHS. Drugs, which might have calmed Colin down, were not given to her husband until his illness was well advanced.

The only relief she got from what became 24-hour care was being offered two days a week for Colin at a local day centre. This only lasted from 10am to 3pm because of his unacceptable behaviour. He tried to grab the steering wheel from an ambulance driver's grasp, so Yvonne was asked to take him there and bring him back herself. It was only when she feared that the gentle man she married would actually kill her - by smashing her head against a wall or throwing her downstairs - that she got the NHS help she needed.

Caused by physical changes to the brain, which are still not entirely understand, dementia can lead to dramatic changes in a person's behaviour, personality and appearance.

In Colin's case the first sign anything was wrong was when he unexpectedly turned up outside Yvonne's office. "I told him I had to work late and put it on the blackboard at home to remind him," recalls Yvonne. "Colin's face suddenly appeared at the window at about 5.30pm. He had completely forgotten that I'd told him."

Yvonne suspected that her husband's behaviour was not just an aberration. "My heart sank. I did know a bit about dementia and I did wonder at that stage."

Yvonne started watching out for signs of odd behaviour and it wasn't very long before the evidence was all around her. "He used to go for walks every day. Sometimes he would be ages and tell me he'd got lost."

It was only when Colin drove the wrong way around a roundabout that Yvonne realised her husband was ill. "After that, I did the driving. He just accepted it, which was strange. He had always done the driving."

Colin was referred to a consultant psychiatrist and given a memory test.

He failed it, miserably, not being able to name his own children.

Colin also got very angry and very aggressive, something which did not bode well for the future. "He was the mildest mannered man you could meet before his illness," says Yvonne.

It was arranged for a community psychiatric nurse to visit once a month and she told Yvonne her husband had a condition called vascular dementia, probably caused by a slight stroke which had damaged part of his brain.

Over time, Colin's condition got worse.

Out for a meal in the local pub, Colin would snatch the food off other people's plates and drink their drinks.

Then the violence started.

"He became abusive, verbally and physically, and this got worse over time. I had to fight him off," says Yvonnne. "He used to bend me backwards over the bannister and try to throw me downstairs. When this didn't work, he got my head in both hands and banged it against the wall. He also tried to choke me."

In an effort to cover up what was happening, Yvonne used to lie about the bruises and black eyes. "The clothes prop fell on me quite a few times," she laughs.

Terrified by her husband's behaviour, Yvonne asked for help and was given two days a week at a local psychiatric hospital day centre. At first this allowed her to have some time to herself but as Colin's behaviour deteriorated, it became part of the problem. "I couldn't go out anyway because they often rang me asking me to pick him up because of his behaviour," she says.

After Colin attacked the ambulance driver by grabbing the wheel on a roundabout, Yvonne had to take him in their car. "I had to fool him into going because he hated it so much. He would start kicking and punching the staff when he got there."

One of the problems was the lack of staff at the day centre. "Someone like Colin needs one-to-one care all of the time. They sometimes left him on his own and he would absolutely trash the place," she recalls. Colin wasn't given medication until quite late on and the drugs kept changing.

Yvonne's nightmarish experience finally came to an end when she could stand the violence no longer.

"It was a Sunday morning. He wouldn't let me dress him and then he started thumping me about the head until I was dazed. I was terrified I would end up brain damaged."

Something snapped. "I just felt I had had enough. I even felt suicidal but I thought that wasn't fair on the family."

When Colin fell asleep, Yvonne rang for an emergency out-of-hours doctor. An hour later two GPs came out to the house and sedated Colin.

No beds were available until the next day so Yvonne was left with her increasingly unpredictable husband until the next morning. A consultant and two GPs came to the house next day, accompanied by a police car, and after a few formalities, Colin was sectioned under the Mental Health Act and admitted to a secure ward.

Yvonne's relief at not being in physical danger fought with her urge to protect and look after her husband. But within a few weeks Colin's torment was over.

"The doctors said he couldn't take liquids without choking. They gradually reduced his life support and he just wasted away," says Yvonne.

The whole sorry episode has left Yvonne with the impression that there is something seriously wrong with NHS services for people with severe, challenging dementia.

"He isn't an isolated case. I know there are thousands of people like me and Colin but it is all kept quiet."

She is also appalled at restrictions on dementia drugs imposed by the National Institute for health and Clinical Excellence (Nice) which has been opposed by the Alzeimer's Society with the backing of this newspaper.

Neil Hunt, chief executive of the Alzheimer's Society, says: "Caring for a person with dementia who is experiencing challenging behaviour can be very distressing and it is important to seek support as early as possible.

"By understanding what causes this type of behaviour and learning ways to deal with it, carers can make sure it happens less often, and feel better able to manage when it does.

"Dementia affects everyone differently and there is currently a lack of specialist services for people with dementia. The Alzheimer's Society is campaigning for more staff training and better quality services that cater for the individual needs of people with dementia."

n The Alzheimer's Society provides a national helpline on 0845-3000-336 or their website: www.alzheimers.org.uk

The names in this article have been changed.

DON'T STOP DEMENTIA DRUGS

THE Northern Echo is running a campaign to ensure that thousands of Alzheimer's sufferers are not denied vital drugs which can slow down the effects of this terrible disease. A decision by NHS drugs watchdog the National Institute for Health and Clinical Excellence (Nice) means that doctors are no longer able to prescribe the drugs to newly diagnosed patients in the early and late stages of Alzheimer's. Healthcare and patient groups have condemned the decision to restrict Aricept, Exelon and Reminyl, which cost as little as £2.50 each per person per day and help dementia sufferers carry out everyday tasks. You can read about the campaign by visiting the Echo's website www.thenorthernecho.co.uk