I just reread briank’s blog “A Decision” and the reply stessie left on it. I admit that since becoming Blog Moderator I read the blogs more carefully and probably at a deeper level. This has meant I see more in them now. A blog often contains a lot of material that is open to interpretation and the physical, emotional and metaphysical impact I think depends on the perspective of the reader. So if you and I sit down and read the same blog we will see different things.

As a long term caregiver it is difficult for me to “move on”. I can come to terms with something I cannot change but I can’t “move on”.

Brian talks about getting himself back to being BRIAN instead of just being a STROKE SURVIVOR and I applaud him for that. It is rather like the people who come onto the site naming themselves as a stroke victim, here we say we are only a victim if we want to be, those who have survived a stroke and are working on recovery are stroke survivors for sure.

But a caregiver is a caregiver until the care recipient no longer needs care. So Brian’s wife can go back to just being, wife, mother, lover and friend and does not have to be a caregiver if he no longer needs care – right? Whereas my caregiving will extend till death do us part as I know Ray will not get back to that independence that will enable me to give up on caring for him. He may go into full-time paid care one day, a SNF or something similar, but that will not end my caregiving, only change the nature of it and the amount of time I spend on it.

I do try to move on wherever possible, I do reassess what I do with and for Ray and make what I would see as seasonal changes. For instance I know in winter his muscles tighten up and he has a shiver response so I do not ask him to go outside in the cold more than necessary, to pick up his belongings or to walk longer distances where he doesn’t need to.

In the warmer weather it is reasonable to expect he will be able to take something from the table to the kitchen bench, to go outside on the verandah and hang a towel on the railings or walk back to the bedroom for something. So his small tasks increase in summer, decrease in winter.

I also change the way I do things in summer as the tasks change, washing dries more quickly, I spend more time outside doing the gardening or yard work, less time inside filling in time unless it is raining. I love to go to the beach and at least look at the waves so I will go a different route to and from where we need to go just to be able to look at the ocean for a minute or two. I want to appreciate the area I live in not just live inside the box that is my home. I live in a beautiful area and I want to be able to see it in the same way the tourists who flock here in summer are able to.

As a long term caregiver I have learned not to make too many plans, for a while I planned my summer and was devastated when those plans didn’t work out. It was a big part of my wishing life could go back to the way it had been prior to the strokes. In the end I realised that kind of thinking destroys you, prevents you from living for today and impedes your enjoyment of the day you are in. In the end I realised that I needed to simply live today’s realities. Ray had had the strokes, there was nothing more I could do, life as we had known it had gone.

And so I have to change and adapt. Ray really can’t do that now, if I want things to change I have to change my attitude to it all. So instead of saying: “I do all the work around here and it is not fair!” I need to say: “I am here to enable Ray to do what he can and do those things for him that he is unable to do for himself.” That makes the most of his abilities and allows me to think of myself as an enabler rather than a domestic drudge.

You will understand if I say this is what I am trying to achieve not always what I do achieve.

Now I have to think about what I need to do as the season changes. It is down to the mundane, the changing of the wardrobes, winter clothes away, summer clothes out, the buying of salad goods and other summer fare, the moving of furniture especially outdoor furniture to enable our summer program to take place. The washing down of walls, changing of curtains, (spring cleaning) for just as you folks are winterizing your homes I am summerizing ours.

Changes, changes, all around I see, some are neutral, some are bad but most are good for me.