A recent survey in Australia has put caregivers as a class, both professional paid workers and unpaid family members as the group with the highest stress of any job, paid or unpaid. I guess I am not surprised. For me it is the constant nature of the job. There is no end to the chores, no point at which I can say: "there, I have done it, that is that finished for now." and walk away, like you do in any other job. Because I am only one person looking after a person who probably needs three or four people to completely look after all his needs. I am always aware that I could do better, do things faster, put more effort into the job etc.

Because I look after Ray and mix mainly with people who are 10-20 years older than me I am the recipient of all kinds of advice. Most advice is well-meant and starts off with something like: "When I was caring for my mother/sister/husband" etc. Everyone has a story to tell me and a lot of the advice is of the "take care of yourself" variety. Of course no-one manages to explain how you look after yourself and look after someone else full-time. I know they are all well-intentioned but I wish people would stop telling me to look after myself and offer to look after Ray for me instead. I know it is never going to happen, but it is a particularly favourite fantasy of mine right now.

I think I am finding it harder now I have to shower Ray. Before his fall in January last year he was able to shower himself. He would pack up what he was doing and just go off and have a shower. But after the fall and the recovery, rehab etc that came after it it was necessary for him to have someone else shower him. He doesn't have the concentration to stand, turn, use the hose etc. It is partly a balance issue, partly a process issue. That is the dementia at work too. It was another piece of independence that he lost. With the dementia gradually increasing other things will slowly follow. It is sad but there it is.

When I read all the newbie caregivers' stories I remember the pain I felt back then, in 1999, when Ray had the major strokes. I remember my anxiety, my eagerness for Ray to get better, to come home, for us to go on with our lives. I didn't realise what a changed life we would lead, how much work there would be for me, and how I would struggle with it. What we go through, emotionally, physically and socially is not in anyone's book on caregiving, there is so little advice for carers that is of a practical nature. I cared for Ray for the first seven years with no outside help at all, apart from the three day breaks at Camp Breakaway twice a year and a friend coming in for a couple of hours every now and again.

Then I started to put him into respite to give myself a break, a time to wind down, relax, feel myself again. When I am busy being "Nurse Susie" there is no time to feel like the person I once used to be. I wonder what happened to her? She was nice, funny, a good listener. She liked a joke, laughed till she cried, seemed to have friends galore. She cooked a wonderful roast with all the trimmings and could throw a dinner party for eight or ten together with a day's notice. She was so good at keeping up a correspondence,answering messages, being a helper in all sorts of situations. She held down two jobs, one paid, one unpaid and people spoke highly of her. I wish I had a friend like her to help me out now. And to tell you the truth I liked myself as that person much more than the unpaid caregiver I am now.

Then as of a year ago I finally accepted that I needed some inhouse help as well. I hated it when Ray looked dirty, unshaven, slovenly in appearance etc. I don't want our standards to drop or for others to see those changes in him and infer that I am not looking after him properly. And yes, I still do worry about what people think of us. So at least the shower nurse coming means it is not always my voice heard making remarks about showers, clean clothes, having a shave etc. And Ray is remarkably more co-operative for the shower nurses than he is for me. Though I think showering him in winter is going to be a bit of a challenge as he feels the cold and our house, being open plan, is only warmed in patches. Which is one reason I think we need to live in a smaller house sooner rather than later.

The changing seasons always seem to bring in new problems. Like your northern winter ours has come in earlier than usual and colder. The temperature is falling earlier than usual and so we are feeling colder. Ray is harder to keep warm since the strokes as like many others he becomes icy cold down his affected side in winter. And he always wants to have light clothing on when something heavier would be more appropriate. He moves so slowly that the exercise and walking he does is not enough to warm his body up.

It was not as warm today as earlier in the week when we enjoyed the warm afternoons out on the verandah. I guess that contributes to me feeling out of sort too. Today the sun was out, the sky was blue but it was colder than it looked. Ray spent some time on the verandah just the same. I went out for a short while, I find just looking at the view and watching the birds come to the feeder next door makes me feel better. I hate feeling cranky and out-of-sorts. I don't think it is sitting on the pity pot. More a build up of frustration over a lot of small things that I feel I have no control over at present.

For the caregiver who stays and works on making the life of the survivor better there is a cost to that staying. It is hard to explain in a way as it is beyond the sum of all he/she does. It is partly the burden of dealing with the frustration of all the life changes and challenges that include physical, financial, emotional and societal limitations. There is a sense in which life slips away with every passing day...sometimes it seems like I live with the death of hope and the absence of joy. Someone once said that joy is an attitude. I look back at the "old me" and wonder how I could have been so care free. But that was both an attitude and a happy accident of life I guess, not an attitude I had cultivated, just a happy circumstance of a somewhat protected life. I wish I could go back there and re-capture that light hearted feeling, just for a while.