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Friday, 23 August 2013

The Reality of Being a Carer

During the past few weeks I've had contact with a number of people who have found themselves in a similar position to me. Most would say that they didn't set out to be a full time carer as a life-style choice - they simply 'evolved' into the role as illness and disability gradually took hold of their loved one. That was certainly my experience initially, although, for us, my role did become rather more intense quite abruptly when Suzie was so poorly last December.
Many people have made some very complimentary comments about the way I care for Suzie, and have said some very kind things, which I really appreciate.... But I don't actually feel like I'm doing anything at all remarkable or special. It just feels 'normal'. As Suzie gradually became less able around the house it just seemed natural for me to take over the tasks that she couldn't do. Likewise, as she became less able to do other things for herself, and eventually became unable to tend to her own personal care, it was just a natural progression for me to help her with these things and do things for her.
It reminds me a lot of when my children were small. When you have a child you take care of them. You wash them and dress them, you comb their hair and put their shoes on, you cook their meals and help them with various tasks that they can't do on their own. When they're ill you clean up after them and comfort them. You sit by their bedside, maybe all night if necessary, if they're unwell or afraid. You make sacrifices, you don't get much time for yourself and you're always on the go. But no-one thinks you're amazing for doing it.... it's just what you do because you're a mother and you love your child. Caring for a loved one like Suzie who is seriously ill and disabled isn't really that different. I'm not amazing or special.... It's just what I do because I love her. I can't imagine responding in any other way to her increasing needs.
A dear friend of ours recently spoke to us about her experience of caring for her husband when he was terminally ill. Like me, she was often told she should go out and have a break. She looked deep into my eyes and said, "But I didn't want to go out and be away from him. I just wanted to be with him. I just wanted to take care of him." It was so helpful for me to hear someone else say exactly what I feel. 
I admit, caring for someone 24/7 is hard work. I won't pretend that I don't get stressed, depressed and exhausted a lot of the time. I won't pretend that there aren't mornings when I would love to just pull the duvet over me and go back to sleep. There are times when I cry tears of sheer exhaustion, frustration, fear and grief as I watch Suzie suffer, and as, together, we see our life slowly and relentlessly being destroyed. But if I can do anything at all to make this painful journey any easier for Suzie then it is my heart's deepest desire to do so. Suzie has given so much of herself and her life to me and my family. Now it's my turn to give something back. 
Does that make me special?? No, I don't think so. I think it just shows how very special Suzie really is, and I thank God for her every day.