Jackie Harrison provides round the clock support for her brother Mark, who has the genetic condition Huntington’s disease.
Miss Harrison, of Brighouse in West Yorkshire, told of the emotional and physical toll of caring, and the struggle to get help from social care professionals.
She said: “It’s 24 hours a day, 365 days a year. It’s a very complex disease. It’s day in, day out. It’s a long time to go without a break or a holiday.
“For the person you’re caring for, their world becomes very small. There are limits to the places you can go. Your world shrinks as their world shrinks.
“Because it’s going on behind closed doors, nobody really notices people who are doing it.”
Miss Harrison, 53, said family members often shoulder the burden of support because they know their loved ones better than care staff who often do not remain in the job long enough to build relationships with clients.
She said: “Sadly, the nature of the care industry means you get somebody in and quite often they go. You get used to somebody, then they are not coming any more.
“They are doing quite personal things for you. To be confronted with different people every so often, anybody would find that disconcerting. So you become more reliant on those around you. It’s difficult to understand what Mark’s saying a lot of the time. He relies on me to be his interpreter.”
Despite the pressures of being a carer, Miss Harrison finds the time to make felt dogs which she sends around the world to raise cash for the Huntington’s Disease Association. She has raised more than £6,000 for the charity with the Sybil on Tour project, inspired by her pet dog.
Miss Harrison described the difficulties carers face getting outside support if their loved ones have complex needs.
She said: “We’ve just had an experience with respite care that didn’t work out. It was supposed to be six days, but Mark was home after 48 hours of respite.
“The more complex the needs you have, the less help you can get, in a way.”
Family members often provide care which would be worth thousands of pounds a week if paid for from private care providers.
Miss Harrison said: “If I was to put him in specialist residential care, you’re looking at more than £2,000 a week. You’re doing all sorts. You’re a physiotherapist, a dietician, a pharmacist.
“If we all just packed up one day and said we’re not doing it, then the system would be on its knees.”
Miss Harrison said she did not know show she would make ends need if she was not living with her partner, Tony Surr, 56.
She said “I’m in a situation where I have got a partner living with me. Otherwise we’d be in dire straits.
“I’ve done a degree and got a teaching qualification. I could potentially have had a teaching job. You’re losing that income and pension contributions for a very small amount of money. For people without a partner living with them, I really don’t know how they manage.”