I just heard some sad news. One of the couples I got quite fond of during the last three years that Ray and I went to Camp Breakaway were an ex-headmaster of a private school and his wife. She was/is the dementia sufferer, he the caregiver. I heard from a mutual friend that she went to his funeral on Thursday. The sad thing is that he is the second caregiver of my acquaintance this week who has pre-deceased the one they were caring for. Another timely warning that we need to take care of ourselves.

One of my friends asked me what I was doing to change my life now I have " a lot of free time". Well I dispute the fact that I have a lot of free time but I agree I do have the opportunity to make some choices now. She asked me if I had taken up any new hobbies or gone back to any old ones? I told her there are a lot of events I would like to go to, I would like to do tai chi, swim in the heated pool, go to yoga, go to an occasional movie, meet up with girlfriends and maybe have time to have lunch out ,maybe even go to a live show occasionally. That is what I would have done if this caregiver's life was not all I had for the past twelve plus years.

As I pull farther away from the full-time, hands-on, caregiver role I can see it in a new light. I can see the whole twelve years instead of the day-to-day workload. For a long time I was so busy keeping up with all that had to be done that tomorrow seemed a month away and back beyond yesterday was ancient history. I think that is the way it is for all caregivers. We get so immersed in the day-to-day routines and those things that have to be done that the big picture is out of sight and we just see the way life is today. I am not saying that is a bad thing but that it is the way we survive.

I am wondering how apparent that is to the people I post replies to on the board. I start a reply and think: "She doen't really need to know that" or "Is this how I felt when I was in her place?" I am starting to lose that hard edged feeling, the soldier on the battle field has become the clerk back in the barracks recording the results of the battle rather than being right in the thick of it. So is my opinion really relevant now? I hope so, I want to keep on being a help and support but don't know if I can be.

My role now is more in supporting those I encounter at the Nursing Home and those who are still engaged in fighting against the ravages of stroke or dementia are not really the central group for me now. Over the years I have heard a lot of advice from widows who have nursed a sick husband or old parents and appreciated the time they have taken to give me encouragement and advice but wondered if they knew exactly what I was going through. The answer is: of course not. No-one can know exactly how we feel, all they can do is remind us that many folk have been in that same position and somehow come through the traumas and the dramas and here they are today, survivors or that battle.

I have just got back from seeing Ray. He was sleepy today and very slowed down. It took him about twenty minutes to eat a plate of pureed food as he scraped up a spoonful, looked at it for a while and then put it into his mouth. When he got his head down almost level with his plate I took over. After lunch I took him outside for a while for a breath of fresh air but there was cloud building up and the temperature dropped. Again in the loungeroom he sat with his head down, sleeping on and off. I asked on of the aides about it and she said a lot of them seemed sleepy today, maybe because they had made the air conditioning a notch warmer. It could be just that but maybe another seizure or something approaching. I wish there was a way of predicting that.

Last Sunday I was the preacher at the services today at my own service I was the child minder. I can always tell when Adele greets me: "Hello dear lovely Sue" that she has me marked down to take her place. As the Mum of two little ones she is subject to disappear back to the house when they have colds etc. and today was one such day. I don't mind. I made love hearts which we tied on a string, reminding us that God loves us. The little ones just need some colouring in and some craft to keep them happy. That allows their parents to sit at leisure and take in the service, to hear the sermon without little ones interrupting their train of thought. It is a good break for them.

Another very elderly congregation member, one of those I take home communion to had died overnight so I have another funeral to go to later in the week. It is that time of the year for us, deaths among the elderly, another adjustment to make in who we go out to. I'm glad she was enabled to participate in church life through our outreach programs.

And so I plod on, one day at a time, one foot in front of the other, deeper into winter.