Knackered

Hi everyone been really P??D off last few weeks. Alan just doesn't seem to want to do anything given up saying even one word needs and hand signals just this annoying noise. Think now totally incontinent becoming more difficult not for me but very frustrating. He was only diagnosed less than three years ago. Symptoms change every week not always good. That's it had my moan off to bed now before my man wakes me at 3ish in the morning

Thanks all have lovely Xmas Nette

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  • hi nertte don't give in mate just keep plodding along like the rest of us mate a very merry xmas to you as well matey peter jones q.l.d. Australia psp sufferer and regards te your other half for me see yer mates take care

  • No words can make this crap any better! Have the best chrimbo you can my darling, in some ways as they worsen the caring gets easier I found, you become numb to it all.

    Have a gin , later though!

    Julie x

  • Always feel better after a moan and don't worry have a brandy nearly every night after putting him to bed

    Thanks Nette

  • hmmmm interesting observation

  • Endless and I understand no conversation and just the annoying noise. Its so hard for both of you. I would love to know what my husband is thinking at times. He has no interest in anything. I came in excited yesterday with some new clothes I got for him and he was not interested. You do adjust because you have to and get on with it. Try and have a little time to yourself. xxxx

  • Merry Christmas to you as well Nette.

  • I think the communication thing is probably the hardest thing to deal with especially when you have made an effort to do or get something that should please them. It makes you feel like not bothering but I guess you just don't know what's going on in their mind. Hard for both parties I think.

    Hope you feel a bit better after a rant, hard isn't it?

    Love and hugs

    Kate xxx

  • I find the lack of communication really hard. Sometimes I keep repeating the question and he will answer. I sometimes feel he thinks he has answered. Then he still has times when he can talk and tell me he loves me. It will be hard when he can no longer do that.

    Happy Christmas.

    love, Jean x

  • Oh yes. A can tell me he loves me--at least that is what I think he is saying. That will be very hard to lose along with all the losses.

    Martha

  • Oh boy!! Can I relate to the annoying noise. A does a guttural rhythmic sound that drives me crazy. There are times I know he can control it because I can softly talk him into doing it slower and softer until it stops. Other times I feel it is a obsessive/compulsive thing that he can't control. Other times when he is really p-----d with me he makes it even louder. Is this common with PSP? Do many other sufferers do it?

  • HI MARPH WELL MATEY I THINK THAT YOU WILL FIND ITS SOMETHING HE CANT CONTROL UNLESS THERE IS A WORD OF COMMAND THAT GOES W ITH IT EXAMPLE IF IM WALKING LONG OK AND THEN FREEZE UP I SAY TO MYSELF GO YOU SILLY OLD BUGGER AND OFF I GO OR IF I AM WALKING UP THE HALLWAY TALKING TO MY WIFE SHE WILL SHOUT OUT TO ME I CANT HEAR YOU TALKING TO THE WALLS WHICH IS RIGHT COME BACK AND TALK TO ME THIS TIME SO I POTTER BACK HAVING GARBLED MUTTER TO MYSELF BUT SO FAR ITS BEEN WORKING LIKE IT OR NOT FROM MY POINT OF VIEW MATE WHETEHER THIS WORKS FOR EVEYONE I DO NOT KNOW BUT ANYTHING WORTH A TRY

    SEE YER MATE PETER JONES Q.L.D. AUSTRALIA PSP SUFFERER

  • Thanks for your point of view. I will try it. Sometimes he truly can't stop. Tonight he is so tired I am hoping he will be quiet.

  • Dear Nette,

    Copy cat that is. Same with Charles. 4 year diagnosis. Doesn't talk unless it's with the GoTalk machine, a lifesaver. Sleeps 14 - 18 hours a day. Incontinent. Welcome to our world.

    And yesterday I came down with a cold and am fearful I'll pass it on to Charles which would be terrible because of swallowing issues.

    Love,

    Cuttercat

  • I know. I've just finished with a bad cold and am hoping he doesn't get it. It was also hard caring for him when I really just wanted my bed.

    I don't know what would happen if I was really ill.

    love, Jean x

  • Those thoughts go through my mind as well. I just pray I make it through this ordeal. I'd rather have him here with me but alas we all are destined for sorrow.

    Cuttercat

  • Please tell me you have at least some help with Alan, you will wear yourself out to the point that you will nee help for you!

    As for the groaning annoying noise, I hear ot to with my mother in law, the only way to calm her down is when I hold her hand and make her concentrate on prayer. But sadly, that is also not working as well as it used to....

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