Duty, love and sacrifice

 Fred Hughes cares for his wife Doris at their home in Enfield, north London. “She has multiple sclerosis. She can’t move; she can’t feed herself; she can’t even wipe her nose,” he says. “I need to be with her all the time.” Fred Hughes is 91.

He is one of 8,000 carers in the UK in their nineties, of whom half put in 50 hours a week or more. Indeed, of the nearly six million people who provide unpaid care for relatives or friends, a quarter are older than 60.

As the population ages, so does its carers. And at some cost: as well as financial stress, health deteriorates, worries about the future mount, work is lost and – for many, the heaviest price paid – social life disappears.

Margaret Hall, development and project worker for Blackpool Council’s carers and direct payments team, says many older carers use the authority’s learning and leisure facilities. “Carers get the benefit of support from other carers and obviously the course tutor has a better understanding of the needs of carers.”

IT classes are popular with older carers because many have missed out on learning to use computers. Hall says: “We are encouraging them to become confident to do internet shopping, make GP appointments and e-mail their families.”

Many, though, miss out altogether. “My social life is non-existent,” says Hughes. “I can’t go out in the evenings because I can’t afford the £13.50 an hour it costs to have someone care for my wife while I’m out. Home carers put Doris to bed at 8pm. I need to be in the house from 7.30pm. But I have to do it. It’s my duty.”

It is this sense of duty that sees older carers soldier on through their retirement. One of the biggest shocks for them is the fact they do not necessarily experience retirement in the sense of freedom from work.

Imelda Redmond, chief executive of campaigning charity Carers UK, says: “The period where they travel, have hobbies, spend quality time with family or their partners or take up new interests does not exist for older carers because many end up with a full-time job of looking after someone.”

Although this has its rewarding moments, it is often exhausting, demoralising, physically demanding and unrelenting. The charity has produced a booklet on older carers’ rights so they know where they stand.(1)

Recognition and support are pivotal, says Counsel and Care, an advice and information charity for older people. Chief executive Stephen Burke says older carers are the “hidden backbone” of the social care system. “It is crucial they are given as much support as possible, that they know what they are entitled to as carers and that they feel in control of their caring role.”

Just as important is how and where this information and support are provided. Jef Smith, writer, trainer and consultant in the care of older people, says: “Very elderly carers are unlikely to have internet access, so face-to-face contact in their own homes seems the best way to help them with support and information.”

Information on the quagmire of benefits seems a particular problem. Even staff struggle. Hall says: “Explaining pension credit and carer premium is confusing and complex and I wish it could be made easier.” Also, many older carers are unaware of their entitlements – one in seven carers has been put off claiming benefits because of lack of information – or would rather forgo them than suffer the intrusive questioning of means-testing.

One of the biggest complaints for older carers is that they lose carers allowance once they get a state pension. Redmond says: “For carers it’s a double message that they are ‘retired’ and therefore don’t need the carer’s allowance and are ‘no longer a carer’ because they no longer get the benefit. It’s not just a benefit; it’s important recognition of carers.”

Indeed, the monetary cost of caring should not be underestimated. It is ironic that, although informal caring saves the UK £57bn a year, carers themselves suffer financial hardship. A recent study showed that one-third of carers had given up work early or retired because of their caring role, leaving two-thirds of them worse off financially.(2) Nearly 70 per cent of older carers said they were cutting back on something, such as clothes, nights out and holidays; one in 10 was cutting back on food.

Older carers, in particular, worry about what would happen if they could no longer care. Bill Spendlove,* who cares for his son with Down’s syndrome,  says: “It is a worry for parents like me who have been expected to get on and care for our children for 40 or 50 years. I worry about how my son would manage if something happened to me? I don’t even know what would happen in an emergency, never mind in the long term.”

If Spendlove lived in Blackpool he would be offered an “emergency card”, which resembles a small credit card. If the individual is taken to casualty the details on the card will alert Blackpool Council’s control centre so the cared-for person is not at risk.

Nonetheless, it seems such a concern is an everyday by-product of caring: a worry that you can’t cope; a worry that any natural tiredness, poor health, frustration or resentment is nothing more than you being selfish and uncaring.

But this is where information and support walks in: buying space and time to refuel the energy that can be re-invested into caring.

Caring is tough. Hughes has often walked out of the front gate in frustration. “But I always came back because I just know that my wife wouldn’t survive without me and at the same time, I couldn’t cope without her. She’s my reason to carry on.” 

* Not his real name
(1) Looking after Someone, from 0808 808 7777 or www.carersuk.org
(2) Older Carers in the UK, Sheffield Hallam University and Carers UK, 2005

Case study
Ernie, 71, and Brenda Rose, 68, care for their daughter, Melanie, 42, who has learning difficulties. They have done so in their Derbyshire home with little or no support “because we could cope”.

However, age, illness and other family commitments mean that coping is becoming difficult. “I find that we don’t get the support we need,” says Brenda. “As you get older you’ve not got the physical abilities you had when you were younger.”

Ernie says they also look after their other daughter’s children three nights a week. “It’s never-ending. We don’t ever seem to get any quiet time to build up our energy because we have Melanie continuously. Other people of our age can say ‘we’re going out for a meal’ or ‘we’re going away for a long weekend’. Wouldn’t it be nice if we could do that? To a certain extent I feel I’ve been robbed of my retirement.”

Recently Ernie suffered a serious haemorrhage and was rushed to hospital at night. “Before my wife could come, she had to get Melanie up and dressed, and had to bring her with her. How many other people our age have to do that? I’m sorry if this is sounding like sour grapes – I love my family to bits and I’ll make any sacrifice that’s going for them – but I worry if something should happen to me or Brenda.”

The Roses’ wish-list seems more piece of cake than pie in the sky. “We’d love someone to befriend Melanie and take her out once a month to the pictures or swimming,” says Brenda. “She also goes to a club once a week from 7pm to 9pm. It would be good if we got help with transport.” Once a month Melanie stays with a paid carer from Saturday lunchtime until Sunday teatime.

Her parents would like it if, three times a year, she could go Friday night and come back on Monday.

Last November social services told the Roses that a social worker would visit to discuss their needs but they have not heard anything since. Ernie smiles ruefully: “We should have had a social worker 42 years ago.”