brown out, the stage before burn out
Entry posted by swilkinson
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Hi everyone, I am feeling sad and lonely and blue and a lot of other things today. It is the big let down season after Christmas and New Year is over and before "real life" starts again. It is the time when you clean up the house, throw away the wrapping paper, find a spot for the presents you got and go back to doing mundane chores.
I have been having some trouble in relating to the people here lately. Don't get me wrong, I love Strokenet and all the wonderful people I have met here. I just wonder if we are on the same wave length at the moment. I have found a new site run by the UK Alzheimers Association called Talking Point and have been reading there. I think now that Ray's dementia is more of a problem than his stroke deficits so I need to know how to deal with the dementia.
With dementia you don't get better, you don't get stronger, you don't get recovery. Dementia needs to be managed, by the caregiver, as he/she is the one dealing with the strange behaviour and by any people helping the caregiver. There needs to be routine, rest, calm and regular meals, medication etc. Dementia patients past a certain stage need a lot of direction, a lot of attention and minimum fuss and I think that is where Ray is now.
I had the break of two weeks but it wasn't a rest as I went right on doing all the things I usually do. My fault as I thought if I worked in the mornings and rested in the afternoons for a while that would be the same as going away for a while. Of course it wasn't, I was still getting meals, doing housework and with the Christmas season coming up doing extra cleaning jobs and shopping, shopping, shopping, shopping. I was very proud of all I achieved but of course it came at a price - brown out.
Brown-out is a term used here to signify that time before a power black-out when the lights flick on and off, there is low energy and you can't exactly do anything. It gives you a chance to get the emergency power system going if you have one and get out the candles but nothing more. You can't actually do anything, there isn't enough voltage. And that is a problem if it goes on too long. No-one fixes a system that is still working just a little bit.
I am feeling unsupported. In real life here I have a lot of people calling on me. As an ex-telephone counseller people who know me and are desperate for answers say: "ring Sue, it's better than nothing" and so they do. One friend recently was so hysterical on the phone that I hung up twice before I realised who it was, screaming and crying at the same time doesn't make for easy communications. Her mother is dying, of lung disease, this is complicated by the fact that she has dementia and the medical staff can't cope with that. The answer to my friend is to stay by her mothers side 24 hours a day. Oh yeah. And so she is exhausted physically and mentally. Honestly I can't help in that situation. Even sitting and listening to her on the phone is not much help.
Ray has increasing incontinence now and we are having disrupted nights as I am changing the sheets half way through the nights often two or three nights in a row. I can't understand why this is suddenly happening as there doesn't seem to be any changes in medication, food intake, anything that I can see as causing this. Maybe he has a low grade infection of some kind but he seems fine until dinner time and then it starts. Is it the dementia? I don't know. I am just hoping it goes away again.
I have only so much to give. I need support myself and that isn't available at the moment as my dementia support group that I look on as support for me is in recess. There is a bit of fighting going on in Ray's stroke support group so that is only hobbling along at the moment. I seem to have to call on all my inner resources to keep from going into a black hole. Maybe I need an anti-depressant for myself? I will go to the doctor in a week or two and discuss that.
This is a bit of a vent but it is how I feel right now. That's how life is sometimes, not going well all the time. It doesn't mean I can't cope, just that I am coping at about 30% of how I usually do. Miss Pollyanna seems to have gone on summer holidays and left Miss Grumpy in her place. Thanks if you read this and are feeling some sympathy. I know you all have such kind hearts. But sometimes what I need is someone to put strong arms around me and give me a hug. In real time. And that isn't happening right now.
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