coping with life as it is now
A page in the diary ""
Written by suew 12. Oct 2008 05:31 PM
I can understand why people spend their life in denial. There is a lot to be said for living in fantasy land but I guess we all have to reach the acceptance point and face our particular reality at some stage.
I have looked after Ray for nine years and over that time have gradually watched our lives change as he had more strokes, seizures etc and lost more of his abilities and his independence. Now I guess at each change I go through three stages:
1. I can't cope. This is denial: this can't be happening, I don't want it to happen etc.
2. I've coped with other things but this? I think at this stage I start to face the demons and take up the task. I break it down into manageable chunks and learn how to do it faster and with less stress.
3. I accept the new status of our lives and go on from there.
Having to make up the thickened liquids is a nuisance. I am always walking out of the house without them and running back in to fetch them. Or if I am out and Ray needs a drink trying to figure out what he can have to drink that he will be capable of swallowing. I have not yet got to the stage where I automatically think to make them up and take them with me.
We are planning a trip away in a few weeks, only a week but I am already thinking of how we will manage with the thickened drinks, medications, changes of undergarments etc. We didn't have the problems a couple of years ago when we last did a road trip. With the trips to see our daughter she is there to collect us and acts as back-up while we are there so it is much easier.
Because Ray and I are only in our '60's I feel we should still get out and about, still travel as much as we can, still have holidays if we can. I know that sooner or later all this will be impossible but for now I want to try to keep us mobile. And it is not easy.
Ray wants to see his brother but I know the trip to Queensland will be tiring and tiresome and he will feel insecure and over-react when he is tired. So it is with a certain amount of reluctance that I am taking him. If it all turns out well I will be pleased I've made the effort, if not at least I have tried.
So if you read this think of us and our struggles with life. For me knowing that there are others also struggling in a way makes it less threatening and more worthwhile. And we can use all the support we can get on this journey with dementia.