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Stuart Brown has spent a lifetime in engineering and he and his wife, Julia, were looking forward to a happy retirement until she became ill with multiple sclerosis 35 years ago.

Stuart says: “It means that slowly, day-by-day, a bit of her body is falling off, she just can’t use it any more. She goes to bed and wakes up the next day thinking, I wonder what I can’t do today, which is very depressing.

“At the moment, all she can move is her right hand and arm. She uses an electric wheelchair to get around."

Stuart has to get Julia showered and dressed and provides all his wife’s personal care, with help from a personal assistant who comes in for 20 hours a week. “Other than that I’m working for 120 hours a week for nothing”, says Stuart.

Former engineer now designs solutions

Stuart gave up full time work as an engineer in 1992 and says; “It was only when I came close to having a nervous breakdown that I went to get help. I now make sure I relax every night and do deep breathing exercises and it’s nice, to be able to say, that’s been a good day today. I have half an hour at the start and end of each day doing this before I start the chores.

“It’s very frustrating for my wife as she was the doer and now I do all the cooking, shopping and washing and even cutting up her food. I’ve became a house-mother!”, jokes Stuart

Stuart’s hobby is caravanning and he and his wife now enjoy a fully adapted caravan, which he designed himself. “We just park it in the pub car park, it has a lift for the wheelchair and we make the bed up before we go in the pub.

“It’s keeping my mind going. I’m an improviser and now the caravan is fully wheelchair accessible. I’ve modifed quite a few other things, including a sewing machine so Julia can use it.

Angry at unfairness

Stuart is angry that when he retired, his carers benefit was withdrawn: “It’s as if the state assumes you’re retiring from caring too, but the opposite is true, the caring goes on. We just do what we do and don’t realise it’s anything special”.

Stuart wants the York Carers Forum to help carers recognise themselves as such and get the help they are entitled to.

“I just hope that more carers will come out and discover there’s help and support out there."

There are six million carers in the UK and they save the country an estimated £87 million pounds a year in potential care costs.

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.