let 2009 be a happier year
A page in the diary "Sue's thoughts on life"
Written by suew Saturday, 3 January 2009 00:17
Here we are in 2009, if we reach April that will be ten years since Ray's major strokes. The dementia showed up in 2005 after his fifth stroke so we'll meet the four year milestone for that in May.
I can't say I see a wonderful year ahead but we've weathered forty years together, Ray and I, so I am hoping we manage to spend another one together. The incontinence is increasing as is the confusion so I am doubtful that he will be able to stay at home much longer but I will keep him here for as long as I am able.
I get tired of thinking for two people. I wake up in a panic, saying : "Today is Monday, therefore we have to...." If he doesn't remember things then I have to, reminding him to take the medication, to go to the toilet and avoid "accidents", to change dirty clothes,to comb his hair, clean his teeth, keep his body clean and healthy. Then there is keeping appointments, getting a haircut, making whatever changes and adjustment the medical profession recommends.If you are a carer you will know all the things that have to be done.
Some days I have very little time to myself. During the Christmas/New Year break and well into January the routine is altered and I get a maximum of five hours care per week. That is because Daycare on Tuesdays and Scallywags, his fortnightly men's stroke survivor support group, are both in recess. With so little outside care I seem to just cope and that is all you can say about that period each year.
I wish there was the kind of care a carer needs to live a life that is close to normal. That is too much to ask I know. But five hours a week is so little and quickly taken up with shopping etc.I also try to visit mum twice a week for an hour each time in her Dementia Lodge which cuts back on the time that can be used for all the other things I need to do.
Some times I feel so resentful, three hours of showers, two hours of respite, how do you manage to fit ANY of your own life into that? I hate it when the shower nurse is showering a body I have already cleaned up the night before ( because Ray has had yet another "accident"). I would rather they did the washing up and cleaned up the kitchen instead but the care is not flexible enough to cope with that.
So here's to another year of adjustment, of coping, of hoping things will work out. That is not exactly the best plan for the year ahead but if you have a better plan, let me know.