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Caring for carers

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Cancer does not just affect patients - it can also turn their carers’ lives upside down, says Kathy Oxtoby

The experience of caring often continues after treatment is finished, says Charlotte Argyle, Macmillan Cancer Support’s lifecare transition manager. ‘Some patients are considered to be cured, but might have disabilities or long-term care needs as a result of their illness.’

Alex Burton cared for his wife until her death eight years ago. She had primary breast cancer and secondary bone cancer for two years.

‘From the minute of diagnosis when I became a carer to her death, her needs and my situation as a carer evolved,’ he says.

Carers can often feel like forgotten figures who do not receive the support they need.

‘There is a lack of recognition of carers. Health professionals tend to focus more on the patient, so sometimes carers don’t feel recognised,’ says Ms Argyle.

Mr Burton recalls: ‘Within an hour of diagnosis, my wife was supported throughout by the medical profession but, as carers, we don’t get support. We might be standing on the sidelines, but our journey is just as fraught.’

Lack of communication and information about the illness are among the problems carers face. There is also an assumption that they automatically know how to be carers, when often they are not equipped to deal with the clinical aspects involved.

Caring often means juggling work responsibilities. Even though carers have the right to request flexible working, many small companies are unable to grant this. Some will find a loved one’s health degenerates to the extent that they have to reduce their working hours or even give up their job.

‘Often if the carer can’t work, the household suffers, so financial worries can be a major problem,’ says Ms Argyle.
Mr Burton had to give up work to care for his wife, then spent his savings on equipping their house to meet her needs. ‘Now I’m penniless,’ he says.

The physical strain of caring can take its toll. A survey by Carers UK found that those caring for five years or more tended to have chronic conditions such as back problems. Mr Burton, who has developed chronic osteoarthritis, points out: ‘You you don’t look after your own health - it’s the price you pay for being a carer.’

When prostate cancer spread to her husband’s bones, Lesley Lillie was told his condition was terminal. She recalls that caring for him ‘tested her to the limits’.

‘You don’t realise what caring for somebody 24 hours a day means. It’s a crash course.’

Looking after someone with cancer can take a huge emotional toll, as Mr Burton explains. ‘I was an engineer, a problem-solver,’ he says. ‘But the minute your partner becomes sick, you become emotionally driven.’

Often, the effort to ‘put on a brave face’ can result in feelings of extreme isolation for the carer, he says. ‘While the patient is concentrating on getting well, as a partner, you’re asking: “What if they die? How will I cope? What do I tell my children?”’ he says.

‘I was trying to stay calm and upbeat. The strain is indescribable. It feels like you’re totally alone.’

Nurses can help to alleviate this sense of isolation and play a vital role in supporting carers. Often patients are too ill to take in details about their condition, so, with their consent, carers ‘should be given as much information as possible’, Ms Argyle advises.

She adds that those new to caring may not feel confident enough to deal with, for example, administering medication or delivering intimate care. Nurses should check this and offer information about organisations such as Macmillan Cancer Support and social services departments, which can support them.

Carers often become closely involved in patient care so healthcare professionals should treat them as experts on the patient’s condition.

‘Nurses should involve carers in the planning and provision of care for the patient, and treat them as equals,’ she urges.

It is also important to recognise that carers have different needs from patients, Mr Burton says. Nurses should try to establish carers’ practical and emotional needs and offer information or tell them where they can find support.
However, as Mr Burton points out, supporting carers is about more than giving out leaflets.

‘Sometimes, when you’re feeling strung out, a leaflet is the last thing you need,’ he says. ‘You want to talk to another human being about how you’re feeling.’

While acknowledging nurses are often pushed for time, he urges them to ‘spend some time with the carer - however little that may be’ to give them the opportunity to share their fears and talk through their concerns.
While caring can be physically and emotionally challenging, it can also be rewarding and fulfilling. For Ms Lillie, who lost her husband, work partner and best friend, ‘positive things have come out of extreme pain’.

‘I’ve become a fundraiser for Macmillan which has involved doing the Inca trail, taking a trip to Nepal and I’m running the New York marathon this year.’

Mr Burton says being a carer taught him a lot about himself. ‘You may think you know who you are but, when you become a carer, you got through a real learning process. I was there at the end for my wife. I nursed her through to her last breath. These experiences changed my perceptions of life forever.’

Mr Burton is using his experience of caring to improve life for carers. He is setting up a support group and taking a carers support course. He would also like to see the role of ‘carer support specialist’ created to improve nurses’ understanding carers’ needs.

Nurses being aware that where there is a patient there is a carer can make a huge difference.

As Mr Burton puts it: ‘The patient is always asked how they are. But it would be great if a nurse could turn around to the carer and say: “Hi, how are you today?”’

Three years ago, Fran Carter and her husband Richard were looking forward to the birth of their second child. Then Richard was diagnosed with bladder cancer.

Mr Carter had surgery and chemotherapy and was told he would not be able to have more children.
Mrs Carter had to look after her husband, three-year-old daughter and the new baby.

She found being a carer ‘very isolating’. ‘You feel under pressure to be positive for the person who has cancer, while at the same time wondering how you’d cope if they died,’ she says.

Mrs Carter’s Macmillan nurse put her in touch with a local support group, the Carers Centre for Brighton and Hove, which she found ‘hugely helpful’. ‘For every emotion you’re going through, someone in the group has been there before,’ she says.

Macmillan Cancer Support, the council and charities gave support including helping to pay for a roof repair and a weekend family break.

Nurses can help make life easier, Mrs Carter believes: ‘I know nurses are busy but, if they could talk and listen to carers - just for a few minutes - that would be really helpful.

‘If they could check we’re in contact with the right people to support us, such as a Macmillan nurse, and answer questions about procedures they’re doing - which we might need to do - that would make all the difference.’


Sources of support

Macmillan Cancer Support
Provides practical, medical, emotional and financial support and campaigns for better cancer care

Macmillan CancerLine
Monday to Friday 9am-8pm
Freephone 0808 808 2020
Textphone 0808 808 0121

Carers UK
Telephone 020 7490 8818
Offers support, information and advice on all aspects of caring to carers and professionals.

Freephone 0808 808 7777
Wednesday and Thurday 10am-12pm; 2-4pm.Free advice service

Crossroads Caring for Carers
England and Wales
Telephone 0845 450 0350
Telephone 0141 226 3793
Northern Ireland
Telephone 028 9181 4455
Provides practical care and support in the home to give carers a break from their caring responsibilities

The Princess Royal Trust for Carers
London office: 020 7480 7788
Glasgow office: 0141 221 5066
Northern office: 01257 234 070
Information, advice and support for carers

Carers in Cancer
Support group for carers

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