When we were kids we used to play a lot of games which involved running away from a "catcher". One was called "Whichever way the wind blows". I think it had started with a story about children running way. From my recollection you stood in four groups on what would have been the compass points, north, south, east and west. The "catcher" stood in the middle. She spun on the spot and pointed at one of the groups and that group ran away with her in hot pursuit. The one of the group who was caught then became the catcher. Why, you say, is she telling me this? I guess it is because for the last week or so I have felt as if I am standing with some one pointing a finger at me saying; "Run as fast as you can."

It has been a week of shifted appointments and I managed to miss two of them. One I re-booked for a fortnight's time and the other hasn't got back to me yet. But worse still I also came home from my "time out" today and found a note to say my sister had called to take me to lunch. I felt as if I had let her down. I rang her to apologise and she wasn't a bit friendly and reminded me I had talked to her earlier in the week and should have told her about my plans then. And I guess she is right as I vaguely remember talk of her taking me out to lunch this Friday. I had forgotten that as I also had a Dementia Seminar this morning which as it happened didn't finish till almost 1pm. I guess I should have rung her and arranged to meet her away from the house. But I didn't.

The Dementia Seminar was interesting as the progress of the disease was explained as well as hints on managing dementia behaviours given. I try to go to a support group once a month if I can but don't always get there so the three hours of talks and a lecture by a gerontologist put some of what happened with Mum, who is at the end stages of Alzheimers and Ray who is in the early stages of Vascular Dementia into some sort of pattern for me and that was really helpful.

Dealing with the physical aspects of Ray's strokes and now the mental aspects of his dementia is difficult. Some people here might be dealing with that with an ex-alcoholic husband or someone with a family history of dementia. Having a stroke and developing dementia does not necessarily go hand-in-hand but a TBI causing brain cell loss or anything else that causes brain cell loss like multiple strokes makes it much more likely. One good thing is that with Ray's lack of mobility he can't run away from home like Mum used to do. I think instead he withdraws into his shell when the world gets too much for him.

As well as all this I am going to be away from Tuesday till Friday next week as I am going to Camp Breakaway with Ray. This means I will not get my "Ray free days" instead I will get meals, board and entertainment for a low cost and still have Ray showered every day and a nurse to see to him if he needs one. I decided to do this when he was still very wobbly on his feet and I didn't know if they would take him by himself. Now I think they would have taken him anyway but decided I would still go with him and share with him in this experience. I need to get life back in perspective so hopefully a few days away from home will give me a few hours thinking time too.

By the pattern of dementia we were given today life is going to be tougher in the future. It seems as if the ways we have interacted in our marriage relationship have to be put aside while I deal with the effects of the disease. It was all about maintaining the relationship, not stressing the patient etc. I know that I, as the one who still has the brain cells, have to make the concessions. That is fair enough. But is still seems to me that all of this is about giving up, sacrificing the life I would like to lead for one that is not even a shadow of that. A younger woman sitting along side of me said:"No-one understands what we are dealing with." We say that here, as caregivers and as survivors. Any neurological event, be it stroke or dementia separates us from the mainstream of life.

I visited a friend today before I came home and she asked after Ray and then said something that brought tears to my eyes. "I miss him , you know, your Ray used to make me laugh with all his little stories and jokes and now I look at him and it is as if he is not really there." I have that feeling sometimes too. But I will continue to look after him for as long as I am physically able to.