Would love be enough to see you through if you had to care for your husband full-time? Julia Gregson talks to two women about their experiences

When Valerie married her husband Michael 39 years ago, it was for love. A talented amateur artist who worked for the Ford Motor Company, he adored his home and his wife, who remembers him as 'jolly and loving'. He was also an insulin-dependent diabetic - a minor grey cloud on the horizon.

But by the time their twins and an older daughter were born, the cloud had grown. 'If his sugars got unbalanced he'd get very moody, and although he never hit me, he'd swear and he'd shout,' remembers Valerie, 58. 'The kids learned not to talk to him when he was like that.'

'They also saw him in hypos (a state where there's not enough sugar in the body) where he'd act drunk and wander around the house. If I didn't get some sugar into him, he'd go into a coma.'

'I'd hate to put anybody off marrying a diabetic - things have improved - but this is how it was for me,' says Valerie.

Things deteriorated so much for 63-year-old Michael that Valerie became his full-time carer and a virtual prisoner in her own home. Long-term insulin use led to a variety of problems: a thickening of his nerve endings, double vision, damage to his liver and kidneys. But it was the psychological effect - Michael's profound depression - that Valerie found most shattering.

Says Valerie sadly: 'I asked him recently, "Do you still love me?" and he said, "I need you now." As much as I love him, I feel like my life is over.'

The 5.8 million people carers in the UK (the number is expected to rise to 13 million in the next 10 years) save the government a staggering £58 billion a year (the equivalent of a second NHS) and yet many live on a pittance - Valerie's allowance is just £42 a week. Many are exhausted from the pressures of caring 24/7, yet there are few respite facilities offered to them. Others lament the loss of a relationship they need and depend on.

'Recently,' recalls Valerie, 'when my granddaughter was very ill, I asked Michael for a hug. "I don't know how to hug you anymore," he replied. It was devastating.' For some partners, the loss of a loving physical relationship is the hardest burden of all.

Today, Valerie, a lively sociable woman and a former local labour councillor is socially isolated. She feels worn down by the daily stress and grind of her life.

'I do everything. He finds it difficult to pick things up and hard to feed himself, although he tries. He has a poor short-term memory so I pay all the bills and do the gardening. If I go out, he stands by the window waiting for me and is usually in a state by the time I get back. Not a day goes by without some tears from him - I have to be so careful what I put on the telly. Anything that's slightly depressing makes him burst into tears.'

'Although he's never been a macho man, I do think he's come to resent me, the fact that he seems so weak and dependent in front of me.'

'Weekends are the hardest. You see people going out and you long to go. My best friend's daughter is about to be married, but I can't go. We have seven grandchildren but I can't have them here - his temper is unpredictable. It got so bad with his tempers one day that I walked out, but I came back. I still love him to bits, you see, but I don't always like him.'

And if she could wave a magic wand? 'I'd love to have the bungalow to myself for just one day a week. I'd put music on and put my feet up. The use of a car for one day a week would be great, too. It would be wonderful to be able to go and visit my daughter.'

Few people in the outside world can understand Valerie's isolation, which is why she so appreciates the work done by the Princess Royal Trust for Carers and the supportive message board on their website.

'We get on that message board and we moan and laugh and share our thoughts. It's such a release.' By contrast, the social worker who came from the council to help her, 'Talked to me in front of Michael, which was hopeless. You have to have safe places to talk because the pressure mounts up. Once I got out a packet of paracetamol and I would have taken the whole lot, but then I thought, "What a legacy to leave to the grandkids."'

Elaine Falmouth, (not her real name) agrees with Valerie about the importance of letting off steam. For her, evening classes, her embroidery hobby, her computer and religious faith have helped her through 15 years of caring for a husband, a manic depressive with severe anxiety and suicidal tendencies.

Like Valerie, she hangs on to the happy memories: 'I remember swimming with him, gardening and taking long walks in the country. We would be in the same house but pursuing different hobbies in different rooms. Now he wants me in the same room all the time.'

Elaine admits that the biggest loss for her is 'fun and laughter.' Her life now is, 'a constant round of reassurance, motivation, giving medication, assessing his moods to judge what he'll be like for the rest of the day and whether there is a crisis looming.'

'In the early years of his illness, we lost a lot of friends who couldn't cope with his behaviour and life became very lonely. Both my children left home as soon as they were 16, and our youngest worries all the time that she has the same illness as her dad. She finds it difficult to be around him'.

Leading her husband home, his socks wet and dripping after an attempted drowning in a local stream, marked the lowest point of her marriage. The ambulance parked outside her home heightened her humiliation.

Yet Elaine recalls a very different man. 'When we met, my husband was the life and soul of the party. He loved children and they loved being around him. It wasn't until we'd been married for about 20 years that I learned this had all been a cover. His brother, who had schizophrenia, lived in a mental hospital and committed suicide. About 15 months later, his eldest sister also committed suicide after many attempts. Four years ago, his youngest sister succeeded in killing herself after many awful attempts. Today, my husband is mostly emotionless unless he is stressed. He has no confidence in his abilities or motivation to do anything.'

So what advice would Elaine give to women moving into the role of carer?'Get all the help you can, especially in dealing with the emotional changes in your relationship. In my case, I am no longer a wife but a carer, a mother figure.'

For friends of carers who want to help, the most important think is to acknowledge their needs. Caring can be an exhausting and isolating experience and it's vital to be considerate of a carer's situation.

As Elaine explains: 'I am a person with needs too, and if friends show an interest in me and what I'm doing, I'm more likely to open up to them. Personally, I now find it very difficult to cry - so don't have an expectation that the carer will fall apart and cry all over you. But if they do, just sit alongside them. You don't have to say or do anything - your presence is enough. Don't overstay your welcome. Caring can be exhausting and being a hostess is the last straw. Find out what they like and no longer have time to do. One friend does the shopping for me, and another regularly bakes me a cake. It's a simple gesture, but means so much to me.'

If you're caring for a relative and need support, practical information and advice, contact: The Princess Royal Trust for Carers
Telephone: 0207 480 7788

Get support on iVillage's Carers and Cared For message board, in association with The Princess Royal Trust for Carers.