'Love keeps me going' - Huntington's carer

"I sleep very lightly, almost with one ear and one eye open," says Steve Duckett who cares for his wife, Sandy, who has Huntington's disease.

"I have learned to be a good carer but it is relentless," he continues.

Mrs Duckett, 72, first developed symptoms about 25 years ago.

The inherited genetic condition, which her mother died of, leads to the progressive deterioration of behaviour, thinking and movement. There is currently no cure.

Mr Duckett retired early -10 years ago - from his job in local government, to become a full-time carer.

"At that stage it was more to give Sandy companionship, to make sure she ed to eat and to help her with everyday tasks," he says.

Mrs Duckett's condition has since deteriorated and her very complex health needs means she now qualifies for NHS continuing healthcare, which funds daily carers in their home.

Mr Duckett describes the carers who look after his wife as "diamonds" and says their expert help has made a "huge difference".

"They have given me my life back," he says, but its he still cares for his wife for about 100 hours a week.

"I do all the night time care," he explains.

"I bear the responsibility of looking after her. You never really switch off. I am the one that knows her really well, watches the signs.

"I try to make sure she is getting all the help she needs."

Mrs Duckett has lost all of her mobility, needs to be hoisted and is mostly fed through a feeding tube because her ability to swallow has become severely compromised.

But her attitude to the illness is "inspirational", her husband says.

"I have never heard her say, 'Why me":[]}