I'm need "one" serious moan

Now I know you'll all say dad doesn't know what he's saying

But I'm really hurting right now!

My dad told me this evening he "can't" be bothered to answer my stupid questions!

My response was well perhaps if I didn't live here, it'd be better, to which he said, hmm maybe.....

I was only trying to get him to talk! Why do I bother? I just feel like there's no point

X

22 Replies

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  • Moan away!  I know how you feel, but I also sympathize with your father.  It must be awful to lose one's autonomy, and then when talking, like everything, takes so much effort, it must sometimes be maddening to be asked to do it.  

    Don't take it personally.  The only thing we can do is to keep things as good as they can be for as long as possible, but the end game is never going to feel like a win. So, I guess,  the point is how you live on the way to that too-certain end.

    And I hate it too, cajoling and pushing and hauling, against a pretty strong resistance, when all I am trying to do is to keep him with me and communicating. But it is worth it.

    Hang in there - - and try for a really good moan or rant next time, willya?  Let her rip!

    Love, Ec 

  • Thank you EC

    I tried to keep my moan brief but I feel like screaming, Psp just foxtrot Oscar!! 

    God it's so hard!

    Big hugs x

  • This is so hard isn't it, I can hardly understand what my husband is saying to me any more and I'm afraid my patience is pushed as far as it will go! We are all only human, all I can do is go to another room, take a few deep breaths and then go back and try again!

    Keep doing what you're doing, looking after your Dad as best you can, that's all any of us can do!

    Love and hugs....Pat xx

  • Lol

    Thx u pat

    I often walk away and in fact I have tonight by posting on here 😢

    That's a big problem though, trying to hear what my dad is saying hence I tend to think "try" n make him talk.....perhaps I shouldn't bother.... X

  • The speech therapy exercises we were given do help - - as long as he does them!  The decline continues, and he is often hard to understand, but when he has done the exercises and has activated the muscles you need to articulate, it is such a joy to hear!  Temporary, but isn't everything?

  • Omg EC

    Such a GOOD idea!!

    I'd forgotten about them, thank you!! I'm gonna call them tomw!!

  • I do hope it helps you as much as it does us!  Good luck!

  • Brian often says things that hurt. I break the questions down (like talking to a toddler) i will ask him if he wants a drink.... if the answer is yes i give it a few seconds before i ask tea or juice.

    I find short questions that they don't have to think to much about are the less frustrating for them. Because they have to think about what you have said and then think of the answers before giving it to you it can feel like a whole barrage of questions when you have either asked a long question or a couple of questions in quick succession.

    I explain it to the carers and friends that it's like me asking them a question in french they have to translate it into English before formulating the answer then translation of the answer into french.

    Don't forget it does take a lot of effort for them to formulate the words to have a conversation and it is frustrating for them so they lash out at there nearest and dearest.

         Janexx 

  • Thank you Jane, again your soooo right!

    Sometimes I just need a reminder!

    X

  • I know I'm guilty of wanting and needing Brian to be the same as he was. But i do know that if i push him he gets upset and adgatated then he lashes out. I do beleave a lot of the harsh words etc are the result of frustration. Either that or a man thing. He always feels good when i say to the gardener can you do this or that he looks at Brian says hey boss the mrs has said such and such what do you think. You can see Brian grow to his 6ft and he becomes the man of the house again just to agree with what I've said but it makes him feel like he is making the decision.

        Janexx 

  • Thanks for the reminder, Jane. I do tend to unload the whole barrage at once. I bet I get better results with your method.  Really, thanks. Ec

  • Oh thanks for that Jane I will use the "translating" explanation to Des's carers when needed.

    Even experienced medical people give him a choice of several answers which just does not work.

    Keep going Satt its all anyone can do

    Px

  • Hi, I can totally relate to how you are feeling!!!. Just put S to bed, obvious that he wasn't comfortable.  Think his Catether was pulling, tried to ask what was wrong and I got pushed away in no uncertain terms.  Got him into the bedroom and feet were firmly planted on the floor, so I couldn't push the wheelchair any further.  Refused to clean his teeth.  I know I am wrong, but I am NOT his mother, if he doesn't want to have clean teeth, who am I to argue. Sort of co-operated for me to get him into bed, after that, no communication at all!  Sat here wondering why I bother.  I bet he wasn't like that at the home last week.  If they don't get me help for the nights soon, he will be back in the home, smiling sweetly at the nurses!!!  A stubborn man with PSP, is definelty not a recommended mixture!!! Sleeping pills for me tonight, trying to be good     on the wine front, plus the fact, my wine fridge is still hidden behind loads of wardrobes, from the building work!!!  I will be having words tomorrow, I suggest you do the same, yes we know PSP is causing the problems, but they still have some control over the words chosen, after all, it's only us that gets spoken to like this!

    Sleep well!

    Lots of love

    Heady

  • You have a fridge just for wine!!!!!! Xx

  • Doesn't everyone????  Actually, it's my overflow, but yes, it's main job is to keep the wine cold, plus the freezer part keeps all my special made dinners, so I cook only a few times.  Had loads of dinners for one that I had made for the last few weeks. Still there!!! Hey ho!

    Lots of love

    Heady

  • Awe bless you heady

    It's all a total nightmare, a real one!

    Big hugs x

  • It affects us all like that . Yes we are just human .

    It use to drive me mad when John wouodnt respond to me ,often even change subjects .  

    I realise now it was the way he coped 

    I liken it to times when we are trying to ask something then lose the thread . .you end up saying I well it couldn't have been very important . 

    Only ask one thing at a time . Don't give chicks such as what today you want for dinner. Meat or fish .   Offer one or the other .

    They cannot hold in depth conversation anymore and we miss. That 

    .i use to get so frustrated , I still do but now I know it's not his fault . I am expecting too muc . 

  • Yeah thx I think I'm expecting too much too! 😞

    X

  • Don't take it personally just continue to love him he really must be struggling and doesn't mean it. They say we hurt the ones we love.  Just hold him close and maybe laugh with him I don't know.....I just wish that my dad was still here to say anything to me xxxx

  • As everyone said moan on we all need to know we are not alone.  M can mouth Yes/No but no sound or she groans.  Her speed of reply to questions via thumbs or hand squeeze (careful to avoid thumb or very painful) is getting slower and after a few questions confusion and irritability.  I want conversation but can only ask closed questions (questions with yes/no answers).  I find I am talking at her no longer expecting a response not very good for either of us, that also seems to be way I find I talk to friends and family have to try really hard to make conversation or I will lose them.

    Anyway try the speech exercises again, they can help but only for a while.  He will be insensitive to you it's the PSP, keeping talking or he will disappear into himself.

    Moan on better out than bottled up.  Good luck Tim

  • It really drives me mad. I understand all the above but still resent him keeping me hanging around, waiting for a word.  I also lose patience with him. We are human, not saints and we didn't apply for this job.

    We all do our best.

    Chin up !!

    lots of love, Jean x

  • Hey Satt2015 - you need to moan if that is how you feel, we all do ! ! !    When, many years back, I was caring for my Mother my Doctor said ' you are not looking after your Mother, you are caring for someone with a severe illness' .    That really hit me but I managed to get my head around what he was trying to say and it was so much easier to cope with.    Caring is the hardest job in the world, in my opinion, a ceaseless, thankless task.    I am convinced that our 'loved ones' still do love us and are so grateful for what we all do but, for some reason, cannot express themselves.   It is really hard but you be pleased you've done all the caring and have no regrets.   Enough !  xx

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