For a few days last week Pete was complaining that he had a discharge round the catheter entry point, but I had been told this was natural at times so, to my shame, I got annoyed with him going on about it and kept telling him it was normal. However, on Friday he seemed quite unwell. Nothing you could put your finger on, just really really quiet and upset and wanted to be on the bed. So I rang the district nurses to ask their advice and she said she would refer it to the duty doctor and get them to ring me, which they did quite quickly. The doctor said it sounded like thrush and had he had it before? I said no although he was prone to infections - she said she would prescribe some cream and ring again if that didn't work. However, when Martin (what would I do without him and Mel) collected the prescription, it was actually for his usual antibiotics which Pete started straight away and they seem to have done the trick again thank goodness. I thought at the time, I hope we can get this suprapubic catheter in soon. Bad thought!!! On Saturday a letter arrived cancelling the pre-op assessment booked and re-scheduling it for 18th February - so that's twice now it has been cancelled. Bound to be a third time!!
I have received the forms to fill in to apply for the Alert Card and a reduction in Council Tax, but haven't filled them in yet - just looked at them and thought I will do that tomorrow. It all seems so complicated but I must do it - it all just seems just more hassle and energy and fight. One of the other carers from Wednesday evenings said she also had these feelings and just doesn't have the mental energy to go down yet another road.
Also yesterday Pete was very very shakey when walking and when he was writing his left arm and hand were shaking. Don't know why.
I keep looking back (which you shouldn't do) to this time last year when he was doing so well - what went wrong? Will things just deteriorate or will they get better?
Time will tell.
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