Ann

I became a carer 3 years ago when my partner Nigel had a heart transplant. We had not long been together so it was a difficult time but we managed to get through. As he was starting to get better we got married, but unfortunately two years later, he was diagnosed with Burkitt Lymphoma, a rare type of cancer caused by the anti-rejection drugs he was taking from the heart transplant. Only 3% of patients get Burkitt Lymphoma.

This whole experience of being in hospital for 9 months over the course of 3 years really sapped Nigel’s confidence and he now has acute anxiety. Although he is seeing a psychologist to help with this, I can’t leave him alone for too long. In addition to driving him everywhere and checking his tablets – he takes so many – I generally do most things for him. He is beginning to move forwards a little bit and can now make a cup of tea.

In addition to looking after my husband, my 90-year-old mother came to live near us and, although she is quite independent and lives in retirement accommodation, I spend a lot of time caring for her too. I often spend all day running round after both of them.

I get very frustrated, and often ask myself “Why is this happening to us?”. I feel cheated in a way. But you just have to carry on. I discovered the meaning of ‘for better or for worse, in sickness and in health’. And I did it lovingly. When you go through the trauma of an illness, you find yourself in shock and the impact of it only hits you when you start moving on a little. I really felt like I was up against a brick wall.

With the transplant, I didn’t receive any help at all – I just didn’t know there was any help out there. But with the cancer, the hospital could see we were struggling and got us some help. I heard about the Expert Patients Programme Caring with Confidence course and thought it was something I’d like to attend so that I could talk about my situation with other people. I attended a course in Chichester in 2010.

During one of the workshops, we were coming back from a break and we were all laughing, and I thought “Wow, I haven’t done this for a while”. I listened to other people’s stories; some were caring for 3 people and one was caring for a daughter who had been born blind and deaf. I felt guilty because my husband was moving on a bit and getting better. But they said to me “We don’t do guilt here – we all have our problems and we all help each other to move on”. I realised that I deserved to be there. It was all carers together. I hadn’t really seen myself as a carer before.

The course made me feel like I’d been let out of prison for a couple of hours. If it’s a bad day, you don’t see the outside world at all. My husband can’t really go for walks yet, but we have managed to throw away his wheelchair and he now has a walking stick. We’re making progress and the course has encouraged me to take little steps and not to push myself too much.

I’ve learnt that talking things out really helps. The Caring with Confidence course provided me with some great relaxation techniques and I’ve been using those. In one session I think we could have all fallen asleep, we were so relaxed. And you can do it while sitting in a chair. Being able to forget everything around you for a few minutes is really quite beneficial.

I am so glad I found Caring with Confidence because it does help. It is still helping me and I’m sure it will help other people.

I am happy to say that my husband Nigel has recently got the all-clear from Burkitt Lymphoma and he is in remission now. With all the help and support we’ve been given, we are finally getting our lives back.