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Julie Thomas and Macmillan Carers Advice Coordinator, Sheala Edwards
Three-quarters of carers say that they have reached breaking point because of the pressure of their responsibilities.
The findings have been released as the UK prepares to recognise unpaid carers. Carers Week, aims to highlight the vital work done by people looking after a friend, partner or relative. The theme of this year’s Carers Week is 'Carers... the UK’s secret service' and the aim is to improve recognition of carers whose role can have a negative impact on their health, finances and working life.
Julie Thomas, from Barry, understands the pressures faced by carers. She looked after her husband when he was diagnosed with bowel cancer.
'John had not been well for some time but he had put this down to getting old. But on February 14th 2000 he was diagnosed with bowel cancer and given six to nine months to live. All our plans came to an end. We had made plans for our retirement, go backpacking but everything just stopped. 'About April he started to feel really ill. He was getting tired and depressed. We couldn’t go out and his legs were all swollen. He finally had surgery but it was June and he hadn’t yet had chemotherapy. By this time he was on Warfarin and I had to learn about this and other drugs. It was awful; I am an intelligent person but I had to swot up on the affects of cancer and had to keep a check on his medication.'
'John had not been well for some time but he had put this down to getting old. But on February 14th 2000 he was diagnosed with bowel cancer and given six to nine months to live. All our plans came to an end. We had made plans for our retirement, go backpacking but everything just stopped.
'About April he started to feel really ill. He was getting tired and depressed. We couldn’t go out and his legs were all swollen. He finally had surgery but it was June and he hadn’t yet had chemotherapy. By this time he was on Warfarin and I had to learn about this and other drugs. It was awful; I am an intelligent person but I had to swot up on the affects of cancer and had to keep a check on his medication.'
But as well as her responsibilities, Julie says the physical demands were often overwhelming.
'I was so desperately tired. John was sick a lot so I had to cope with him, clean up after him and I didn’t want to get him depressed so I tried to get him out every day in the car. Eventually he started chemotherapy and the hospital was great but I didn’t see anyone helping me. 'Sometimes I had to get him to Velindre at 7am in the morning so he could have an injection before starting chemotherapy. Nobody told me how the chemo would affect him. I suppose I could have asked but you are so busy concentrating on the cared for that you don’t think of yourself. I was trying to cope with the tablets that John had to take before and after chemotherapy and his legs would swell so I had to massage them so they wouldn’t split. 'He had to do his own injection because I couldn’t do them. I couldn’t put this needle in his stomach and I have never forgiven myself for that. 'It would have been so wonderful if I could have rung someone up and asked ‘what do I do now?’. You have friends and they were all working but you couldn’t say to them ‘why is this happening?’ There was nobody to talk to me and I just wish I would have known about the Carers Centre who could guide me and tell me what was out there.'
'I was so desperately tired. John was sick a lot so I had to cope with him, clean up after him and I didn’t want to get him depressed so I tried to get him out every day in the car. Eventually he started chemotherapy and the hospital was great but I didn’t see anyone helping me.
'Sometimes I had to get him to Velindre at 7am in the morning so he could have an injection before starting chemotherapy. Nobody told me how the chemo would affect him. I suppose I could have asked but you are so busy concentrating on the cared for that you don’t think of yourself. I was trying to cope with the tablets that John had to take before and after chemotherapy and his legs would swell so I had to massage them so they wouldn’t split.
'He had to do his own injection because I couldn’t do them. I couldn’t put this needle in his stomach and I have never forgiven myself for that.
'It would have been so wonderful if I could have rung someone up and asked ‘what do I do now?’. You have friends and they were all working but you couldn’t say to them ‘why is this happening?’ There was nobody to talk to me and I just wish I would have known about the Carers Centre who could guide me and tell me what was out there.'
John sadly died in 2000 and Julie has used her experience to help other carers. She now works at the Princess Royal Trust for Carers, Cardiff Carers Centre, alongside Sheala Edwards, Macmillan’s first Cancer Support Carer’s Advice Coordinator in Wales.
Sheala said:
'Carer’s are often the forgotten group, providing help and support to loved ones while neglecting their own needs. Whilst caring can often be a positive experience, for many, it is a stressful and anxious time. Carer’s can feel very isolated and the majority of carer’s I meet need to talk about what they are going through. I am able to listen with empathy and at the same time provide much needed support with the more day to day issues of caring.'
Sue Hutton, Chair of the Cardiff Carers Centre, said:
'The Carers Centre has supported carers of all ages for many years in a variety of ways appropriate and personal to their caring situation. Through this much needed project, funded by Macmillan Cancer support, we are able to address a specific need by providing timely support to carers affected by cancer.'
Macmillan Cancer Support is calling for greater recognition and support for carers during Carers Week as well as celebrating the contribution they make to society, which saves the economy £87 billion every year.
Cath Lindley, General Manager of Macmillan cancer Support in Wales, said:
'Macmillan works in partnership to provide a range of support services for people caring for someone with cancer. These include carers’ services that provide carers with practical support so they can take a much-needed break, information and support centres across the UK that offer a range of information on caring for someone with cancer and benefits advice services that can advise carers on the financial support they are entitled to.'
To find out more about Macmillan services for carers and its involvement in Carers Week visit www.macmillan.org.uk/carers|.