Your stories

Anne Keswick has cared for her husband, John, for the last 14 years. He has Scleroderma and this means his whole immune system has broken down and his internal organs don’t work normally.

He recently had five fingers removed due to his illness and he has difficulty swallowing and eating. He can’t walk far at all and uses an electric wheelchair. 

Bitter – why us?

Anne says; “He went to work with a heavy cold, he’d never been ill in his life and he just came home one Friday and never went back.

“It’s been quite devastating really, when you’ve been fit all your life and something happens like this. We’re very bitter about how it’s changed our lives and often wonder, why us?

“We can’t have a life like a lot of our friends are having and we've worked so hard all our lives”.

Anne and her husband kept a pub for nine years in York and she was hairdresser for most of her adult life. She became a full-time carer almost overnight and for many years she had no help looking after her husband.

“I lost a lot of friends because they couldn’t cope with it and they stopped coming to see us. I have made a lot of new ‘real’ friends since becoming a carer.

 “Sometimes I felt like I wanted to run away from it because I seemed to have no help or back-up and the care always seemed to be on my shoulders.

“I also found it a real battle to get the right services as my husband was self-employed and so getting the right benefits for him as a disabled person and for me as a carer took some time, but we are now getting everything we’re entitled to."

‘Hidden’ carers

There are over half a million carers in York and North Yorkshire and along with many people, Anne didn’t recognise herself as a carer. It took a long time for her to realise her life had changed through caring.

“I realised I had two jobs and I got very depressed with my situation. I’ve suffered heart problems these last couple of years brought on by the stress of it all.

Anne now gets breaks through the Selby and York Carers Centre, an organisation that works for and with carers in York and Selby.

Recently, however some carers have decided to form a new group giving them an independent voice and a valuable support network.

“Since joining the York Carers Forum, I shout help and get it when I need it. I am a lot more knowledgeable about my rights and carers issues thanks to the support we’re getting”.

She hopes the new York Carers Forum will lead to improvements in the help people get and that carers have a greater voice in the City of York.

For more information about the York Carers Forum call the CSV Actionline at BBC Radio York on 01904 610606 or fill in the form below.