Respite care and how to get it

When you’re a carer, taking a break is vital to your wellbeing. Sarah Brealey explains what respite care is and meets people who’ve benefitted.

Sara Frith and husband, Allan  

Caring for someone you love is never easy. It’s a round-the-clock job, and can be physically and emotionally demanding. Sara Firth’s husband Allan (both pictured above) was diagnosed with Alzheimer’s disease last June.

“He seemed to deteriorate very quickly,” says Sara, 50. “Up until last February he was still working part time. Within a couple of months he wasn’t safe to be left alone.

“It is emotionally very difficult. Most of the time he doesn’t know who I am. He likes to go out a lot, but he has no concept of time of day. It is exhausting for the person caring for him.”

Sara, from Shipley, West Yorkshire, who works for a community mental health service, has help from her six grown-up children. That and the respite she gets while Allan is at a day centre once a week has allowed her to continue working, although she’s had to go part time. “Without any respite at all, I don’t know how we would cope,” she says.

How to get respite care

Respite care could be daytime care at a day centre or lunch club, or residential care, such as at a care home, nursing home or hospice. It can also mean a paid carer coming into your home or covering overnight care, so carers can catch up on sleep.

Taking a break is vital to the carer’s wellbeing

Jack Gillis
Adviceline Manager at Carers UK

If you think you could benefit from respite care, asking your local council for a carers’ assessment is a good first step. There can be a charge for respite services – this typically depends on the financial situation of the person being looked after (not the carer). But some grants are available, so check with your local council or carers’ centre.

Jack Gillis, Adviceline Manager at Carers UK, said: “It is possible to approach care homes or local care agencies directly and arrange and pay for it yourself. Some carers feel happy doing that, especially if they know they will be paying the full costs of care anyway. But we encourage people to get a care assessment.

“There are new responsibilities under the Care Act for local authorities to provide this assessment and new responsibility to provide support for carers. Even if you have had difficulty in the past, it is worth asking again, because things have improved.”

If your local authority covers some respite care costs, you don’t have to use the care they provide. “You are entitled to request a direct payment that you can use to employ a person of your choice,” Jack explains.

Break for both

Sara Frith

Respite care for Allan allows his wife Sara to continue working

Sara had a heart attack six years ago and also has bipolar disorder. In November, she suffered another heart attack.

“Getting things in place when you have not been well yourself is not easy,” she says. “I was in hospital for six days after my last heart attack. On several occasions I was tempted to discharge myself because I was so worried about my husband.”

Allan, 67, goes to a specialist day centre for people with dementia, run by the NHS. “It is very good,” Sara says. “The one problem is that he is the youngest person there. On his first day he came home and said: ‘They’re all old grannies’. I think there is a gap in services for younger people with dementia, but it does reduce isolation for him.

“I think he senses it is not just for him, it is for us as a family. Even though he’s not overly keen, he never says he doesn’t want to go. If he did, I wouldn’t force him.” Sara is hoping he’ll be given a second day each week, so she can continue working.

“I’ve gone part time, but unless I can get more care for him, I’ll have to give up. Our children have rallied round, but I think I should be looking after him and they should be living their lives.”

Hospice care

Respite care is “a godsend” for Shelley Cope, 43, from Stoke-on-Trent. She cares full time for her five-year-old son, Owen, who was born with hypoplastic left heart syndrome and has already had surgery four times. He also has autism and learning difficulties, and needs to be fed via a tube.

Without any respite, I don’t know how we would cope

Shelley Cope

“It is very stressful looking after Owen,” says Shelley. “I am a single parent so it is down to me. Respite care gives me a chance to spend time with my other children, Ben, 23, and Josh, seven.

“Ben still lives at home and he helps me care for Owen, so respite care is a break for him as well. It means I can go somewhere for the day with Josh or have dinner with Ben.”

Owen’s respite care is provided by the local children’s hospice, who look after him for a night or two at a time, typically four times a year. “Without the respite I don’t know how I would cope,” says Shelley. “I think I would have had a breakdown.”

Shelley also gets direct payments from social services, which she finds useful. “I use them to employ a carer,” she says. “It means I can try to get the same carer; because of Owen’s autism, he doesn’t respond well to people he doesn’t know.”

Don’t feel guilty

Some people find entrusting their loved one’s care to someone else, possibly a stranger, difficult. Jack emphasises the benefits of a rest. “Being a carer can be very intense. It can be helpful for the carer to have a break,” he says. “And it’s just as good for the person being cared for.

“We often speak to people who have reservations. People worry about the quality of care. They don’t know if they can trust someone else to do it and they can feel guilty. We think taking a break is vital to the carer’s wellbeing.”

Useful contacts

Alzheimer’s Society

  • In the UK, 850,000 people are living with dementia. The charity has a National Dementia Helpline (0300 222 11 22). Or visit the Alzheimer’s Society website.

Care Quality Commission

Carers Trust

  • Carers Trust (click ‘Local support’ to find a carers’ centre) or call 0844 800 4361.

Carers UK

Social services

  • Look up your local council in the phone book or online, or ask your GP or nurse.

More useful information