Just before Christmas we had the CHC checklist however we did not trigger to go forward with an assessment - how much further down the PSP journey do we have to go to get the ball rolling ?
Yesterday I think my beautiful mum reached the next stage as she can no longer transfer/weight bear - she had been getting worse transferring but yesterday when transferring her from the commode to her bed on the rotunder we only just made it without injury to either of us ( yes I was doing this on my own ) If it hadn't been for my children's dad ( he was here visiting our boys and doesn't get on with my mum or really talk to her let alone anything else ) coming to the rescue and helping me things could of been a lot worse. I had a panic attack and was hysterical , I felt useless and guilty. Once we had got her back in bed and as comfy as possible I called the district nurse team to find out what I could do as her carers were not due for another 3-4hours , when they called back they said not to try again and if she needed the loo she would just have to be cared for in her bed. Is this classed as double incontinence now ? She was already incontinent of urine so we had the pads already thankfully.
She is getting more and more muddled daily thinking what is on the TV is happening in the room and is real , thinking the duvet has pockets / openings where there aren't any or hallucinating thinking people are behind the curtains and when I tell her there is no one there she calls me a liar all quite frightening for my 10 & 4 yr old too. I have started to agree with some of her ramblings so as not to make things worse.
She has to have drinks via a straw but this takes her breath away and sometimes she has a coughing fit after drinking - I have to feed her most of her meals and as yet we haven't had any choking.
PSP is so cruel and robs its victims of all their dignity. I hate PSP and all it keeps doing to all of our loved ones and their carers.