Tired and sleeping more and more

Charles has been so hot, clammy, flushed, etc. for three days but no temp. Nurse came as well.

He wants to sleep more and more and won't use his Gotalk so we had a fight about that. He used it for the nurse! So frustrating. I'm always saying I'm sorry, forgive me, etc. but I keep doing things wrong, so to speak.

I'm hyper vigilant and always hovering. But I can't help it.

Anhyone else had these issues?

Cuttercat

8 Replies

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  • Every minute of every day!!!

    Sending big hug and much love

    Lots of love

    Anne

  • Only at the margin.

    Liz most often gets very hot at night and she too does not have a temperature.

    Also her behaviour with the carers is exemplary and with a smile. I tend to get whining and a grumpy face.

    Yes, I am hyper vigilant too. She get's an idea into her head like moving across the room to get something. She can't stand without assistance and then only for a moment.

    Someone suggested a camera and a baby monitor app for my phone. Liz doesn't want that so we are relying on my deaf ears.

    Warmly

    Kevin

  • Very typical PSP I think - sunny and cooperative for carers and professionals but quite different for the 'useless' nearest and dearest!

    x

  • Being on red alert is the most taxing part of caring for PSP sufferer as you never switch off. I now have evening as well as morning carers in as I am too tired and grumpy getting Ben to bed and it's not fair on him. Still don't have CHC but Ben has just started getting his state pension so most goes towards his caring and the cleaner I employ for 2 hours a week. I sometimes think what a waste of good money when I can do it myself but it all gets too much for one person to bare so in the end I consider it money well spent. Xxx

  • Yes and yes to the issues you describe. Mum has alot of hot sweaty episodes and no temperature and also goes ice cold in a second, body temperature control is broke.

    Carers are the biggest pain for me as they think they know best but only see a snapshot during the day and that is normally the best snapshot!

  • Oh yes.

    Cuttercat

  • Yes,

    Mom had the same sweats, no fever. She stated having pain as well. Don't know what it truly was, my feeling is the disease progressing, messing with the part of the brain that controls the body tempature.

  • My grandad was diagnosed ages ago and I feel the illness has really hit him hard now. He has always been a sleepy person but yes since being diagnosedone he now sleeps whenever he can wherever he can. Sleeping is normal they need the rest X

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