Last updated at 14:47, Wednesday, 14 October 2009

Thirteen years ago, when Lisa Farmer became a parent for the second time, her life changed forever.

Lisa Farmer daughter Sarah, who has autism

The birth of her second child Sarah was a blessing for her and her husband Marc, a software engineer at Sellafield.

But for 39-year-old Lisa in particular, it was to be more of a turning point in her life than she could have imagined.

“I knew from day one that there was something different about her,” said Lisa, a former Probation Service worker, from Carlisle.

“Sarah would just look past us when we were trying to communicate with her, and she made no attempt to communicate with us.”

At first, the couple thought that Sarah, now 13, had a hearing impairment.

It was only after three years that the truth was finally arrived at as doctors diagnosed Sarah with autism.

As with most full-time carers, Lisa had to come to terms not only with the problems that would affect her daughter for the rest of her life.

She also had to cope with the knowledge that her own life had changed dramatically.

Lisa had joined Cumbria’s army of carers, each battling away day in and day out to do their best for a loved one.

The issue was thrown into sharp focus last week when the autistic son of an elderly Carlisle couple became distressed after failing to adjust to his new life away from his family home and the parents he had always lived with.

Ian Air, who is 49 but has the mental age of a toddler, suffered feelings of grief after moving into a community-based home near Carlisle with professional carers.

His parents Bill and Zena – both in their late 80s – were becoming too frail to continue caring for their son.

Leaving them was such a wrench for Ian that in his distress he lashed out at a carer, prompting the astonishing suggestion from a social worker that he be arrested. The police refused.

But it was the kind of disaster every retiring carer fears. Fortunately, Ian’s twin brother Alan intervened, taking Ian home while officials worked out what to do next.

Like many people, Lisa was appalled at the suggestion that a man with the mind of a toddler be arrested. And like Ian’s family, she has had to fight to get support.

She said: “The most difficult thing is when you’re dealing with the education system. It’s so stressful it’s ridiculous.

“You have to fight for your child to get specialist help – but whether it’s seven hours a week or ten hours, your child doesn’t stop being autistic just because that time’s up.”

In Ian Air’s case, said Lisa, his violent outburst was probably his childlike attempt to express deep unhappiness. “Autism is a communication disorder,” she said.

As for being a disabled child’s full-time carer, the job never goes away, said Lisa. “It’s 24 hours a day, seven days a week,” she said.

“Every little thing you do is affected. You have to think about things so carefully because autistic children can be very affected by lights and noise and crowds.

“When they have the Christmas lights switch on in town, that’s a big no .

“You have to give up a lot. Before having Sarah, I did a lot of voluntary work at school and Tullie House. I had a Saturday job and I used to be a clerical worker with the Probation Service.

“But work just became too difficult because of the stress. It can also affect your relationship as a couple because often one of us goes off with Sarah while the other goes off with her older sister Natalie.

“We love Sarah – she’s a fabulous person, who has a completely different take on the world; so innocent.

“But being a carer puts a lot of restrictions on your freedom.”

As for the long term future, Lisa hopes that one day Sarah can have a normal life.

“I need her to be independent and to know she’s being taken care of but I don’t want to put on her sister. I’m trying to see light at the end of the tunnel and believe that at some point I’ll get my life back but if I don’t, so be it.”

That stoic attitude – the British tradition of grinning and bearing it – is a common feature among carers.

In some cases, it masks years of selfless – and at times self-sacrificing – dedication to care from people across the generations.

One person who knows more than most about the burdens carried by carers such as Lisa and Ian Air’s family is Dawn Kenyon, manager of Carlisle Carers Association.

The Fusehill Street based charity does its best to support the one in 10 who have some kind of caring role.

One of its projects encourages carers to provide “Life Books,” detailing the needs, likes, and fears of the person they care for.

For dependent adults such as Ian Air, such a scheme can prove invaluable in the event of a sudden crisis.

Dawn said: “One big issue for people who have a very big caring role is social isolation: they often lose contact with their friends.

“It can be a 24/7 commitment, and there’s no getting away from it.

“I came across one case where a man from Carlisle had not been able to leave his home for several years.

“He was in his 70s and became completely socially isolated, with no friends and no support structure. He was just completely tied up in caring for his wife. It just shows that being a carer can be a very lonely job.”

Carlisle Carers Association helps people in this position in numerous ways.

It provides practical support, caring for carers so they can continue to do what they do out of love.

As well as providing essential equipment to ease the burden of carers, the charity runs weekly therapy sessions, with free massages and reflexology – paid for by Cumbria Coop.

Perhaps more shockingly, many carers are children, thrust into an adult role by the disability of a parent.

“Some carers in this county are as young as five years old, while our oldest are in their 90s, so it covers the whole spectrum of age,” said Dawn.

Yet were it not for this army of unpaid and dedicated carers, the NHS would be crushed financially by the need to do professionally what so many relatives give for free.

“They save the NHS £87 billion with all their free care and support and because they provide all of that for free they should be regarded as a valuable resource and invested in,” said Gordon Conochie, a policy officer for the Princess Royal Trust for Carers and Crossroads Care, a provider of support for carers.

USEFUL CONTACTS

Carlisle Carers Association 01228 542156

Eden Carers Association: 01768 890280.

West Cumbria Carers Association: 01900 810101

Crossroads Cumbria: 01228 547518

First published at 11:33, Wednesday, 14 October 2009
Published by http://www.newsandstar.co.uk