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Carers Week: Janis’ Story

15 June 2011

Janis had not taken a proper break from caring for her profoundly disabled son for 26 years before she heard about The Kiloran Trust in 1996, age 49.

Janis Handley – 63 this year – lives in Creswell, near Chesterfield in Derbyshire, with her son Paul, who turned 43 this month. Paul became ill at 18 months old and was diagnosed with a brain tumour when he was nine. Radiation treatment left him with severe nerve damage and complex disabilities.

“They didn’t have the same scanning technologies and treatments back then that they do now” said Janis.

“He’s like a three year old. He’s never walked and is profoundly deaf. I have a baby in a man’s body.”

Janis, Paul, his sister Danielle and her daughter Olivia

But Janis is explicit that her son is happy and brings joy to her life.

“We have such a laugh together. He’s just had his birthday – he loves his birthdays and we always celebrate them for at least a month. He goes to his wheelchair skating at Nottingham Ice Arena on Sundays. He loves it and really thinks he’s ice skating! And we take him to Center Parcs every year. It’s a lot of effort, and we have to take all the equipment with us, but it’s worth it to see the look on his face.

“He did some classes at the Healthy Living Centre and thought he was doing Slimming World. When he got home he wouldn’t eat his tea and asked for a slimming drink instead! Then the other day he proposed to my friend’s sister and suggested that they have a baby!”

Of course it isn’t all plain sailing.

“It’s an unconditional love you have and you just want to do what’s best for them but you become so tired sometimes. When he had his stroke three years ago, I slept on the floor next to his bed for 11 months.

“It’s sometimes difficult to admit you are not coping. People say ‘you are doing a marvellous job, aren’t you wonderful’ and you feel like screaming and saying no, I am not coping and I am so tired.”

Kiloran offers Janis the respite she so desperately needs.

“I couldn’t cope without my breaks at Kiloran. I walk through the door and it is like a home from home – it’s so amazing, somewhere you are cared for and cared about. They are such wonderful people,” she said.

Janis now goes on an annual holiday. She took a trip to the Holy Land at Easter, spending Good Friday on the Sea of Galilee. “Oh, it was fantastic.”

As well as being a Trustee of The Kiloran Trust, Janis also works part time at Derbyshire Carer’s Association while Paul is cared for by his sister or at a day centre.

“I have gained enough confidence to be able to leave him now. I would never have left him before. Kiloran installed the confidence in me and made me realise I need a break. I know I am very lucky.”

The Big Lottery Fund awarded The Kiloran Trust £109,328 in 2007 through its Reaching Communities programme, which aims to help those most in need and build stronger communities.

This funded a full time project manager for three years so that unpaid carers from across England could continue to stay at the organisation’s premises for a five day period, where they could rest, recuperate, talk to trained staff about their difficulties if needed, and pursue new interests away from their usual caring responsibilities.

Noreen McIlvenna, Director at Kiloran, said: “Kiloran provides a ‘home from home’ atmosphere, where the needs of the carer are a priority, giving them an opportunity to relax, unwind, and have some ‘me time’. There is no pressure; no timetable; just tranquillity to make personal choices. It has been said many times that Kiloran is like a ‘haven in the storm of life’.

“After decades of caring for her son, Janis found Kiloran and has never looked back, she has gained self esteem; a new job;  participates as a service user on our Trustee Board giving practical input with decision making, and has become part of the ethos that the Kiloran experience represents.

“She is a wonderful personality who really takes the biscuit for her unbelievable dedication.”

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