I went to my dementia support group today. Although they meet twice a month I only usually get to one a month, too much else to do with my Fridays after all I still have Mum to visit, shopping to do etc in the three hours I have a minder for Ray. I was pleased I went today though as one of the assistants to the mentor was doing a kind of revision on the skills needed for caregivers who help to manage the life of someone with dementia. Like Ray some of the care recipients have also had strokes so we are all on the same kind of journey. All trying to do our best to keep the one we care for alive and happy. And that is no easy job.

On the way out I passed the access point to the sewer, we used to call them "man hole covers" I don't know what they are called now. This one had a sign across it, it read "confined space" and I thought how apt that was as a description of a caregiver's life, of my life. My life is a confined space. Sure it can be a happy, sunny space some days, but it is also a hard-to-take, grindingly boring space other days. My world is limited by the tasks I have to do and the time I can use for myself, by the time I spend looking after Ray and the time I can spend away from Ray,doing the things I want to do.

The tasks I do here are mostly those of a normal stay-at-home housewife plus the extra jobs a person without a man around the house would have to do and then there are the jobs associated with looking after a semi-invalid. I guess caregiving tasks vary, with each caregiver doing tasks from an endless list of possibilities. Whoever you are caregiver for it is always over and above the work done by others who have a healthy spouse. There are always extra jobs to do here, extra washing, extra cleaning, food preparation etc. I have to do special shopping and with all the doctor's appointments etc it seems to entail more driving too.

I am not complaining, this is not a vent. It was for a moment a recognition of what my life is like. And I think that is healthy, to know what life is like and to just get on with it the way it is. You all know how much time I spend trying to change things, reason things through etc. Today I just acknowledged something and moved on.

This afternoon I had a visitor from another site I belong to, she lives about two hours drive from here and we met last year too. We talked over the way we handle things with the dementia, I can use present examples of how I deal with Ray and past examples of how I used to deal with Mum. She looks after her Mum who has dementia and also used to look after her Dad who died from a heart attack late last year. As we talked I thought how different we are, she is much younger, has a much different lifestyle, different values and ideals. What we have in common is being a caregiver to someone with dementia and that is enough to make us as close as sisters. Amazing what that isolating disease can do in bringing us so close. So we may be confined but we need not be alone or lonely.

I'm glad I have this site and a couple of others where I have made some cyber friends who spill over into other parts of my real life, like Babs (BabsZ) and Eddie coming here from Oklahoma and my friend today coming from the other side of Newcastle. It is good we can make new friends especially as many of the people we once thought of as friends can have seemed to have abandoned us. I say "seemed to" as I know in some instances I am to blame. It is easy when you are a caregiver to become self-absorbed, locked in your own busy little world.

I ring old friends and they say "what have you and Ray been doing?" and I have to think real carefully about how much of my life I am able to share with them. Some of them are sensitive little petals and mention of Ray's BMs, his problems with bleeding etc could offend their sensibilities, so I give them the refined, civilized version and then of course I feel they don't understand. Well how would they when I have been less than honest with them? So some of the walls of the "confined space" I have built myself.

Tomorrow is a meeting of the WAGS group, the parent body of the Scallywags' Men's Stroke Support group Ray goes to on Fridays once a fortnight and then on to the engagement party of the daughter of friends of ours. We have been friends with them since before we were all married, so a long time. This is the only adopted child and she has had her wayward years so it is nice she is thinking of settling down at last. As we are old friends from way back in the past it will be interesting to see who else is there that Ray will remember. Sometimes when we meet someone I have to say: "look who it is, it is George, you remember George don't you, you and George you...." and give an instance of something they did together. I feel like an idiot doing it but it seems to work and gives them something to talk about.

Just trying to keep the walls of the confined space as far apart as possible.