Another night of no sleep

Well George has another urine infection, I think now he has another chest infection, he is really agitated, I phoned 111 they are going to get someone to ring me back, they said in an hour, nearly there, no call, George keeps calling me, when I go in there he saying help help me, so tired of this horrible horrible PSP, it is not only affecting them, it is taking everything out of us, I am so tired could sleep standing up!!!!!! Oh well let's see what Monday brings to our great lives. Sorry but I am so tired of PSP xxxxx

35 Replies

  • Poor dear! I think lack of sleep is really the hardest thing. It takes everything out of you. I hope your Monday is better. Hugs and warm wishes.

  • Thank you, just waiting for the doctor to come, I said to him on our phone conversation, George is agitated, he said that is not a symptom of PSP, I felt like screaming, oh yes it is, so tired I could not talk, and forgot all the symptoms of PSP, hopefully it is from lack of sleep, our I am loosing my mind xxxx

  • Oh it is so frustrating when doctors aren't familiar with the disease. They really do need to learn to listen to the caregivers. You're not losing your mind. I hope you can get some rest after the doctor visit.

  • Exhaustion is the worst feeling, draining you of everything. Please think of telling the professionals that you are so tired and that you need a break. You cannot look after George unless you are strong and well, so if at all possible ask for help with respite,.

    I have a night sitter once a week now to give me one uninterrupted night of sleep, stupid thing is I wake with other nonesense going through my head!!!

    Hey Ho, if you can ask for a night or a week of respite

    Sending love and hugs.

  • Thank you doctor been, chest infection, he might have to go into hospital, asked doctor to give George, one of the injections we have here for agitation, he said no DN has to do it, it's like pass the parcel xxx. Still waiting for someone to do it, and to top it all catheter looks like it is not draining xxxxx Monday does not look good xxxxx

  • Hi Yvonne, so sorry George has another infection. With regards to the agitation, I had low dose oral morphine I could give Colin when he was agitated. It wasn't strong enough to stop pain but would calm him down. The hospice suggested it to the GP who prescribed it. He only needed it about twice a week. The morphine they bought to the house near the end, just in case he needed it, (he didn't) was 10 times stronger than the one I had already, so ours was very low.

    Perhaps you could get some oral morphine. It certainly helped Colin.

    Sending a big hug


  • Oh no sounds not fun night at all.

    Hope someone comes out to help with injection. Did the Dr give anything for the chest infection?

    Big hugs

  • Bless you and George . Sending you both hugs xxx

  • Dear Yvonne, you are having a really tough time and lack of sleep doesn't help the coping mechanism. PSP again doing its very worst, it is a monster that just won't stop putting every obstacle into the mix. My heart goes out to you, hope that Monday proves a better day.

    Take care and big hugs

    Kate xxx

  • My heart goes out to you Yvonne. There is no let up with this disease. I feel so sorry for you god cant understand how the doctor could not give George the injection, all we are looking for is a bit of compassion and help. Hope you can get some sleep as we are hopeless without our sleep. Big hug from me xxx

  • Hi Yvonne , you and George seem to be going from one crisis to another, I know nobody wants to be in hospital, but right now it may be for the best, at least you'd be able to sleep tonight, and maybe when he comes home it would be with some extra support, let us know what happens


    Debbie xxxx

  • Hi Yvonne, Debbie is right. If they want to take into Hospital, let them. Then make sure, everyone knows how you are suffering and that you need your care plan upped. They won't be allowed to discharge George until everything is put in place, it's surprising how quickly that gets things working.

    I do hope George is the antibiotics he needs and responds quickly. Try and get some rest, even if it's just laying down beside George. You know the saying, if George is asleep then so should you. None of this, I can't sleep during the day, just lie down and close your eyes and let the body take over.

    Sending big hug and much love

    Lots of love


  • Sounds just awful Yvonne - hang in there in the hope of a brighter day soon. We're all thinking of you & in some small way sharing your pain X

  • So sorry you are both suffering again Yvonne. Maybe hospital is the right place at the moment - it will give you some respite and get George the antibiotics he needs.

    My thoughts are with you.


  • Oh Jean

    I hope you can get some sleep today.

    Tiredness is a killer.

    Thinking of you both



  • So sorry to know that you both are having such a struggle. Please keep us posted. Prayers for George's rapid improvement.

  • Sending a big hug. Hope the week improves for you both. X

  • I've been there, calling and getting no one. I'm sorry.


  • So sorry, Yvonne. I agree with Heady. You need more support. You can't go on like this. Must sleep or you will become a health risk !!! They don't like that.

    I'm a bit late so hope it is sorted by now.

    Love, Jean x

  • oi \gtree jjean

    l,pl,ol,jillx xxxxx

  • Yvonne I'm so sorry to hear this, how's things now? X

  • My heart goes out to you Yvonne, this disease is the absolute pits!

    Keith is just getting over a c diff infection and has now got a UTI infection, why does it have to keep on taking everything, I hate it!

    Thinking of you and seeing you a massive hug!....Pat xx

  • Thinking of you, Yvonne. Whatever else is going on, I do hope you are able to get some sleep. Exhaustion is a miserable state. Hugs, Ec

  • We are sitting in the hospital been here from 12 o'clock no beds, consultant got upset because George does not want a peg , so tired xxxx

  • Big, big hug, Yvonne . Lots of love, Jean xxx

  • What a rotten time hope you can both get some sleep soon, without sleep everything is so much harder. Take care of yourself sending love and a big hug

    Tippyleaf xxx

  • Yvonne have you asked to be referred to Marie Curie - they will come in on a regular basis and give you a good night's sleep . Your community matron or OT can do this . They have been a life saver for me and no I haven't heard anything from CHC yet .

    love Georgepa

  • Thank you everyone, my daughter and myself got in about 1.30 we were at the hospital for nearly 13 hours, they have kept George in, they said it was a bad chest infection. The got him a bed on the ward at 12.30 all ok on leaving xxxxx

  • Hi Yvonne, I guessed from your silence, that they must have admitted George. Least now they will be able to give him some heavy duty antibiotics, that sort him out.

    George is now in a safe environment, being well cared for, I guess for at least a couple of days.

    Now is your turn. Let the others do lots of visiting, you just pop in to check everything is OK, then get out of there! Go home, lock the doors, turn off the phone and SLEEP!!! When you are feeling a bit more civilised, start talking to people, tell them how you are not coping and you need more care in place. You can't allow yourself to be running on empty, then expect to be able to nurse George through his chest infection. 13 hours in A & E, is exhausting, no doubt with very few coffee breaks or food. We all must have a reserve tank, that is always full, to be able to cope with these emergencies. They are going to happen, we have to be prepared, physically and mentally.

    I know life has been extra tough in the last few days, due to Georges illness, but somehow Yvonne, you have to find a way to get some proper rest. When he comes home, you will need to be very fresh to cope, to be able to build George's strength back up. Please promise you self, you won't spend hours at the hospital, unless it's absolutely necessary.

    Nag over!!!

    Sending huge hug and much love

    Lots of love


  • I hope you are sleeping now, Yvonne. Love to you and George and your family, Easterncedar

  • Thank you cxx

  • I hope George is doing better, whatever better means for the wretched my friend need to take care of yourself. I know this is easier said than done, but once you put your head on your pillow hopefully your body will tell your brain YOU NEED REST.

    Sleep well,

    Love to you

  • Thank you all, feeling really tired, George seems to be getting worse, really agitated feel bad leaving him, but he is in a good place, pulled out the canular twice blood everywhere, tired going to bed, my brother is down and he is going to the hospital in the morning xxxxx

  • Please, Please, Yvonne, sleep so you can be yourself.

    You have done so well.

    Big hugs and give yourself sleep so you will cope.

    Love, Jean x

  • Jean just come to bed, keep thinking about George in hospital, but I am tired hopefully I will sleep xxxxx

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