carers and stress
by Wendy Moore
Being an unpaid carer can be rewarding but it can also be extremely stressful. Whether you are looking after an elderly relative, a sick child, a partner with a terminal illness or anyone else who demands frequent help and attention, the strains can prove enormous. Yet there are services available and practical ways to combat the stress of caring.
© www.johnbirdsall.co.uk
Both June Proffitt and Jean Evans became full-time carers when their husbands became terminally ill. But their experiences as carers proved very different.
Jean became the prime carer for her husband Keith after he was diagnosed with cancer of the colon and given six months to live. Although watching her husband die was hugely distressing, Jean was given various support in nursing and caring for Keith, including a holiday in a charity-run hotel, weekly visits to a day centre and relaxation therapy for herself and Keith. Towards the end, Keith received regular nursing care in his own home.
Life for June was very different. She received little help caring for husband Den, who became housebound following several heart attacks and major cardiac surgery. June, who herself suffers serious asthma, was offered no respite care and had to pay privately for a reflexologist to help relieve Den's pain. She explained, 'You try to keep going for his sake more than anything. You try to keep strong but sometimes it is very difficult. It just seems a complete long tunnel – there is no end.'
Whatever the circumstances, caring for somebody can be stressful at times. Yet there are services available and practical ways to combat the stress of caring.
the stress of caring
Almost six million people in Britain – one in eight adults – are carers. While the average age is between 45 and 64, according to the 1995 General Household Survey published in 1998, up to 50,000 carers are believed to be under 18. Carers look after people who cannot look after themselves due to disability, illness or frailty. This can include terminal illnesses such as cancer or AIDS. Although most carers are women, about 42 per cent are men. Nearly half of all carers juggle their role with paid work.
But although carers are a truly diverse group, stress is a common experience to most. More than half have been treated for a stress-related illness since becoming a carer, according to a study, Ignored and Invisible?, by Carers UK. Another study, In Poor Health: The Impact of Caring On Health, published by the organisation in 2004, found that carers providing high levels of care were twice as likely to suffer ill health as non-carers. What's more, if they don't get a break, carers are twice as likely to suffer from mental health problems.
Many more carers suffer stress but never get as far as telling their doctor. One study which interviewed 93 carers found 63 per cent suffered stress. The report, Stress in Informal Carers of Hospitalised Elderly Patients, published in 1995, also found that 47 per cent of carers suffered depression.
Find out more about depression in our mind section.
what causes carers stress?
It is not hard to see why caring can be so stressful. Often it means working long hours, sometimes around-the-clock. It can cause conflicts with paid work and – especially for those who give up working – financial difficulties. Taking a holiday, getting a brief break or even going to the dentist can be well nigh impossible. The strain may also tell on relationships with other members of the family.
A survey carried out for the Princess Royal Trust for Carers showed that 22 per cent of carers are on the job 50 hours a week. The General Household Survey 1995 reveals that almost half (49 per cent) of carers who spend at least 20 hours a week caring, have not had a break since taking on their caring duties. For almost half this was more than five years.
'Stress is a really big problem,' says Mark Major, who runs Kettering Carers' Centre for the Princess Royal Trust. While most carers cope admirably most of the time – 'that is what they do – coping' – the job can be extremely draining, he says.
'Being a carer is about loss of opportunity. You have to put yourself second most of the time,' says Major. 'You have very little time for yourself and with some illnesses you can literally be on call 24 hours a day, seven days a week.'
On top of this, a survey by Carers UK called Back Me Up found that 96 per cent of carers worry about what would happen in an emergency and how they'd find replacement care. As a result of their anxiety, a lot of carers lead even more restricted lives than they already have, worrying about doing things like going out with their friends in case something unexpected should happen to them.
Caring can be physically as well as emotionally demanding. Caring for someone with dementia, for example, may mean getting up several times in the night, says Major. Carers may have to deal with different authorities in an effort to find support services and often suffer financial problems. Many carers are forced to give up paid jobs, says Major. This may mean swapping a decent wage for a life on benefits.
Find out more about caring for someone with dementia in our mind section.
young carers
Carers attending the Kettering Carers' Centre can be as young as five years old. The rise in one parent families has meant more children becoming prime carer for a parent. Although young carers may not describe what they feel as 'stress', they are clearly under great pressures, says centre manager Mark Major.
'Getting to school on time or doing after school activities can be very difficult,' he says. 'If the school does not know about the family situation they may just see a child who is late or is poorly attending or is not taking part in activities.'
The Office for National Statistics estimates there are between 19,000 and 51,000 carers in the UK under 18. Saul Becker, director of the Young Carers Research Group at Loughborough University, believes that is probably a 'gross underestimate'. A survey of over 1300 young people commissioned by The Princess Royal Trust for Carers found that 12 per cent of 7-19 year olds were looking after someone with an illness, disability or health problem who couldn't manage alone. This would correspond to over a million people aged up to 19 in Great Britain.
The Young Carers Research Group's research shows about two-thirds of young carers look after someone with a physical disability, while one third care for someone with a mental health problem. Their role includes 'basic domestic duties to very intimate and personal care and everything in between', says Becker. Research has clearly shown young carers experience stress in loss of friendships, anxiety, stigma – especially if the parent has a mental illness, drug or alcohol problem, or AIDS – depression, isolation and schooling difficulties. One survey by the group in 1997 revealed one third of young carers of school age experienced educational problems.
Often, says Becker, young people are forced into a caring role through lack of local services. The Carers Act 1995 gives all carers the right to an assessment of their needs – so long as the person cared for has an assessment at the same time – but does not necessarily lead to any help. The Carers and Disabled Children Act 2000, which came into force in 2001, gives carers over 16 a right to certain services, regardless of whether the person cared for receives help, but this means younger carers still fall through the net. These rights currently cover just England and Wales. Consultation is taking place in Scotland on similar laws.
However, many voluntary groups run projects to help young carers – like the young carers' group at the Kettering Carers' Centre – offering practical help, advice and support (see help and info, below).
coping with caring
All carers are different and their circumstances vary so help to combat stress needs to suit the individual. Anne Roberts, director of operations at the carers' charity Crossroads, says: 'There are different things that cause pressure for different people in a caring situation.'
Direct services for the person cared for – whether day care, respite care or home support – can be one of the most crucial ways of helping carers cope. You can find out about your rights as a carer and accessing services in our feature on carers in family.
For carers themselves a range of support may help prevent and manage stress. This can include:
- information – on services, support groups, benefits etc
- advice and advocacy – to access and negotiate with local services
- time off – for holidays, day trips or just a break from routine
- meeting others – talking to other carers can be a lifeline
- therapies – stress relief therapies, like massage and aromatherapy, aid relaxation and provide a break
- stress management – find ways to deal with your stress.
Many of these services are offered by voluntary organisations but provision is patchy. Some local authorities provide grants specifically for carers to take a break. If there is a local carers' centre in your area this is your best first port of call. The Princess Royal Trust runs 113 carers' centres, which offer a variety of help from yoga groups to advice sessions, and over 70 young carers projects around the country. The Kettering centre organises day trips, young carers' holidays, stress management courses, and 'pamper days'. Other charities also operate local carers' centres.
Betty's story
Betty Fussell knows all too well the stresses and strains of being a carer. During a stretch spanning more than 20 years, she has looked after her mother, her mother-in-law, her husband's uncle and her granddaughter, while somehow holding down a full-time job and bringing up two children.
'Caring is so stressful it is almost unbelievable,' says Betty, now 69, who lives in Burntwood, near Lichfield. Although the pressures at one time grew so great she felt close to a mental breakdown, Betty had little practical help and never talked to her doctor about how she felt. 'I didn't have time to go to a doctor,' she says. 'I didn't have time to do anything for myself at all.'
Betty, now 69, was in her late 40s when her mother had a stroke and moved in with her and husband Stan. Although her mother recovered physically, she suffered mentally and eventually did not even know who Betty was. 'She used to say to my sister "I haven't seen Betty for weeks" and she was living with us,' Betty recalls. Without the help of her sister – who visited weekly to look after their mother for a day – she could not have coped, she says.
As her mother became incontinent, Betty had to wash bedding every day while working fulltime as a Tupperware manager with 30 staff and bringing up two young children. 'My mother would lock herself in the bathroom when the children wanted to get ready for school,' she says. She would also run off and reappear 20 miles away. 'It was very, very stressful,' says Betty. Her day usually began at 6.30am, when she stripped and washed her mother's bedding, and went on until she came home from evening work at 10 or 11pm.
'I feel now I would not have done it again because the children missed out,' says Betty. The children needed me more than mother did.' Her mother died about 15 years ago and Betty says: 'It sounds dreadful but I was glad – for her as well as for me.'
It was only towards the end of caring for her mother that Betty found out about a local carers' group, which helped her access support like a continence service providing clean sheets daily, as well as offering emotional help. For many carers, it was the only place they could vent their real feelings, she says.
But within a year, Betty became a carer again, taking in both her mother-in-law, who had diabetes and arthritis, and her mother-in-law's brother, who had cerebral palsy. She had to get up several times every night to take her mother-in-law to the toilet. 'Occasionally I would have a quick scream,' says Betty. 'It was either that or I would hit her.' Although the family had a caravan, they could rarely get away because of the difficulties obtaining respite care.
The uncle died after two years but the strain of caring forced Betty to give up her job, losing a good salary and company car. Her only income was invalid care allowance but this was cut off immediately her mother-in-law died. 'To be honest I felt I was near a breakdown,' says Betty.
Yet Betty soon found herself caring once more. Her son's daughter, Amy, was born with neurofibromatosis, which causes tumours on nerve ends. Amy was never able to walk and spent much time in hospital undergoing painful operations. Betty shared the caring with her son and daughter-in-law, staying with Amy when she went into hospital until she died, aged eight, just three years ago. 'We were very close,' she says. She now has a grandson, aged three.
Without the support of other carers, Betty does not believe she would have coped with the strains of caring. But she says: 'I was doing nothing that thousands of other people weren't doing. It is just such a pity they are not recognised.'
help and info
Channel 4 is not responsible for the content of third party sites.
organisations
Carers UK
20-25 Glasshouse Yard
London EC1A 4JT
Carers' Line: 0808 808 7777 (Wed-Thur 10am-12pm and 2pm-4pm)
E-mail: info@carersuk.org
Website: www.carersuk.org
National voice of carers in the UK. Provides free information and advice on any aspect of caring, including dealing with the stresses, strains and financial problems that caring can bring.
Contact a Family
209-211 City Road
London EC1V 1JN
Helpline: 0808 808 3555 (Mon-Fri 10am-4pm)
Textphone: 0808 808 3556 (Mon-Fri 10am-4pm)
E-mail: info@cafamily.org.uk
Website: www.cafamily.org.uk
Gives information and support to anyone who cares for a child with a disability, special need or rare syndrome. Can put parents in touch with support groups and each other.
Crossroads
10 Regent Place
Rugby CV21 2PN
Tel: 0845 450 0350 (Mon-Fri 8.30am-5pm)
E-mail: communications@crossroads.org.uk
Website: www.crossroads.org.uk
Provides practical support to carers by offering short-term breaks in the home. Can provide details of local Crossroads schemes.
Help the Aged
207-221 Pentonville Road
London N1 9UZ
Tel: 020 7278 1114
SeniorLine: 0808 800 6565 (Mon-Fri 9am-4pm)
Northern Ireland only: 0808 808 7575 (Mon-Fri 9am-4pm)
E-mail: info@helptheaged.org.uk
Website: www.helptheaged.org.uk
Provides practical support to help older people live independent lives, particularly those who are frail, isolated or poor. Campaigns with and on behalf of older people and raises money to help pensioners in need. See the website for online leaflets on a range of issues and contact the SeniorLine for free welfare rights advice.
Princess Royal Trust for Carers
142 Minories
London EC3N 1LB
Tel: 020 7480 7788 (Mon-Fri 9am-5pm)
E-mail: info@carers.org
Website: www.carers.org
Provides information, support and practical help to carers through its network of carer centres. The website has details of local carers centres, and details of benefits, rights and support.
websites
Age Concern
www.ageconcern.org.uk
Aims to improve the quality of life of older people, and provide practical information and advice to older people and their families. Website has factsheets on a range of issues that affect older people in the UK.
Carers
www.carers.gov.uk
Department of Health site featuring information for carers about government services and other help, government policy on carers, and a range of links.
Carers' Information
www.carersinformation.org.uk
Resources to support informal carers, including advice on benefits and finance, legal issues, the NHS and Social Services.
Rethink: Carers
www.rethinkcarers.org
Contains information and resources on caring for someone with severe mental illness, support services and publications.
YCNet
www.youngcarers.net
A place where young carers (under 18) can go for help, information and support. They can email a question, check the messages boards or go to the moderated chatroom, which is specifically for young carers. Site also includes information on coping strategies for young carers and advice for professionals, such as teachers, who are in contact with young carers.
Young Carers
www.childrenssociety.org.uk/youngcarers/
Site for young carers, their families and those who work to support them across the UK, with information about the Young Carers initiative.
Young Carers Research Group
www.ycrg.org.uk
A research unit at Loughborough University which conducts research, evaluation and consultancy on all matters relating to young carers, to advance knowledge and inform the development of policy and good practice.
reading
Who Cares for Carers? A directory of support services for HIV carers in the UK (National AIDS Trust, 2002) |
|
 |
The Selfish Pig's Guide to Caring by Hugh Marriott (Polperro Heritage Press, 2003) |
 |
Staying Sane: Managing the stress of caring by Tanya Arroba and Lesley Bell (Age Concern, 2001) |
 |
Young Carers and their Families by Saul Becker (Blackwell Science, 1998) |
 |
|
(updated May 2005)
