Having to care

TWO summers ago, York couple Jennie and John Cook had everything to look forward too. Their eldest son Aaron, 20, had just landed a sales job with Nestl while their other son Adam, 15, had decided to leave school and follow his dream of joining the RAF.

"We were looking forward to getting our lives back, to going on holidays and spending more quality time together," says Jennie. "But we spoke too soon."

Just weeks later John suffered a massive brain haemorrhage at the age aged 49. Jennie was told by medics to prepare for the worst. "The surgeon told me that if it was his son or father he would not operate because John was going to die. He warned me that if John lived he would be a vegetable."

But Jennie, who runs Cooks guest-house in Bishopthorpe Road, was determined to give John a chance and ordered surgeons to operate. Her decision saved John's life. Doctors did not know how badly John would be affected by the bleed into his brain. There was a chance that he might not be able to breathe for himself or swallow, let alone walk or talk again.

But John defied the medics. Not only were his breathing and swallowing mechanisms intact, with the aid of physiotherapy and speech therapy he began to walk and talk again.

Despite this progress, John is still a shadow of his former self. A joiner at Nestl, he was a DIY enthusiast who enjoyed taking his sons to football and loved going to the pub with his mates.

The stroke left him with limited movement and vision down his right side, and it is a credit to his determination that he can now walk with the help of a stick.

More frustrating for him - and for Jennie - is the devastating effect on his communication abilities. Although John can understand the world around him, he struggles with his speech.

Often he just says a string of single words, hoping the listener can piece them together to make sense of what he is trying to say.

After 26 years of marriage, Jennie knows her husband inside out and is expert at following his chains of thought. But with other people, she often has to act as an interpreter.

This is just another factor which ties them together, making him all the more dependent on her.

Malaysian-born Jennie, who gave up a nursing career because of crippling arthritis, accepts her new role as her husband's prime carer. She is one of about six million people in the UK who look after a frail, sick or disabled loved one unpaid, saving the nation £34 billion a year in care bills.

Jennie doesn't see herself as a heroine. "He's my husband and I love him," she says. But hers is a hard and stressful job, largely because she is for ever striving for John to get better, for him to practice his physiotherapy exercises or to try to talk more with friends.

"People think I'm a bully, but I want to improve his world," she says.

Frustratingly for her, John seems to have accepted what has happened and that there will be no improvement. He is happy sitting in his comfy arm chair watching TV, but Jennie won't settle at that.

"I fear he is letting it all go. If I don't help him along, he will sit there and vegetate. I can't envisage my life just sitting watching television with him."

Jennie is full of praise for people who have helped them over the past two years, most notably the home helps who come for an hour each morning to bathe and dress John and the friends who fix the things around the house which he once did.

But some acquaintances have lost touch since the stroke, she says. Fewer friends invite them out as a couple, and even some of John's old mates have stopped asking him to the pub.

"It is very tiring for people to understand him," says Jennie. "And maybe people can't cope with that, but my greatest fear is that people will forget about him."

Their sons have been a great support - Aaron bought a cross trainer for John to exercise on at home - but the burden of care still rests with Jennie.

"John and I used to share the work in the house 50-50," she says. "Now I have to take over his 50 per cent but also another 50 per cent in looking after him. It's no wonder I'm knackered."

The couple are looking forward to the next respite break, during which John will stay at a residential home in Harrogate.

John enjoyed the last one. "Scarborough, sandwiches, pub," he says with a wry smile.

Such a break gives each a little holiday from the other and affords the chance to recharge their batteries to face the challenges ahead.

Jennie says: "It's nice to know that for one week at least I'm not responsible for anyone but myself."

Despite the blow which life has dealt them, their close bond and good humour has helped them through these darkest moments.

"We thought life was going good for us, but we spoke too soon," she says. "You can plan life, but whether it goes according to that plan is another thing.

"On the positive side, we don't have to get up for work each day or worry about redundancy, we can go out, go for nice meals.

"But I'd give anything to get John back to how he was before."

Carers fact file:

- One in eight adults in the UK are carers. This army of carers saves the nation an estimated £34 billion a year.

- At least half of all carers have given up their jobs to look after a loved one.

- There are 51,000 carers under the age of 18 in the UK.

- Two thirds of carers suffer from ill health or injury and more than half say the job has affected their health.

- Carers suffer from financial worries, emotional stress, physical demands, isolation, loneliness, lack of information and support.

- Many carers do not realise they are entitled to benefits and support. Social Services and the Benefits Agency can advise on what help is available.