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    MND stands for ...

    Most Nasty Disease
    I have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too

    #2
    Oh Jeanette you are so right. I'm sure there are plenty who can come up with other words that match yours or even worse.
    Denise 😙

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      #3
      Stephen just complains all the time. He tells me he thinks he's half dead. He thinks he's about to die. He just goes on and on. I don't know what to do and I don't know how to help. I've told him that he tells me this every day and all it does is make me depressed and I feel so helpless. I try to be positive and kind but after day after day it gets a bit much and I end up saying things I shouldn't. I don't see an end to it.
      🤤

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        #4
        So sorry about this situation Denise. It must be so hard for you both.

        No magic words I'm afraid but sending hugs and thinking of you.

        Love Debbie x

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          #5
          Thanks Debbie that means so much 😙

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            #6
            Sounds really tough for you both, Denise, hugs. And Jeanette that is a very polite way of describing mnd! x
            Diagnosed July 2020, ALS bulbar onset.

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              #7
              Thanks Heather. I thought Jeanette was holding back. Think she could have come up with worse than that! I'd give it a go but I get in trouble for just kissing 😐

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                #8
                Denise I have the opposite but the same outcome..........my husband hardly utters a word all day, and its not that he can't, he's just taking everything I do including some stuff I say out of sheer frustration about the whole situation, he never retaliates, makes any suggestions or recommendations,

                He's never even been on this forum, no interest

                When it was first muted about this disease he said he would be going to Dignitas, not mentioned it since but last week said it might be "pill" time......that in itself makes me feel useless,

                I contacted the local hospice today, hes no interest in that either, its so annoying and almost too much to bear

                It would appear there is only one end to all of this

                Sue

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                  #9
                  Stephen is the same. No interest in helping himself, no interest in the forum. It's like he's in his own world. He speaks when it's time to eat. He speaks when he wants something done. He wants to go Out, he loves to drive but doesn't want to get out of the car. He did say he was so lucky to have me. I said it wasn't so lucky for me. Ok that wasn't nice but he thought it funny. I feel like I'm going nuts.😦

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                    #10
                    Wouldn't you think, or I would - that now is the time to say things - break the habit of a lifetime FGS.......but no if I threw a bucket of water over him he'd just carry on reading,

                    I actually said the other day "in sickness and in health" - its a right old load of b******s !! - he didn't even respond to that!

                    In a cocoon

                    Sue

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                      #11
                      I don't know what the answer is. I guess we count to 10 and carry on. I have deep meaningful conversations with him but give him 10 minutes and he's forgotten what I've said. I think I talk to him for my own benefit but I don't know if he realises I've spoken. I've told him that I don't know how we'll cope when he's too ill but he thinks he'll be fine. I think I'll be the one taking the pills. Perhaps they turn off to ignore it all. I don't really know but whenever I try to encourage him he's exhausted. I put food in front of him and he turns his nose up. The amount of times I've nearly emptied the plate over his head. I had really horrible thoughts this morning. I could do with a sound proof room where I can scream and shout.

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                        #12
                        Hi Denise, sounds a frustrating situation for you. Would your husband accept talking to a psychologist/counsellor for MND(I am linked to one and talk to him 6 weekly which really helps me).He sounds very low as do you. Do you get any respite from your caring role?Could he be depressed and he needs to talk to GP or has he just as part of that low mood withdrawn .Are there any health professionals coming in to see you and your husband that you can share your feelings with?Its sad as today is all we have so we need to make the best of it but thats not possible when people feel so low and won't accept help .Does he have a faith? church he belongs to? yI really hope you both get some support to make this journey more bearable. Best wishes Mary

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                          #13
                          Hi Mary
                          no we don't have anyone. We're in Portugal. I don't have anyone close to talk to. No support whatsoever.

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                            #14
                            Denise, I’m sorry that you’re going through a bad time. As a sufferer with MND and a husband that has a short fuse (always has, from I met him). He’s never taken the tiniest suggestions or tactful criticism without coming at me full verbal throttle. So I’m coming from the other side of this discussion but get upset by how he treats me (verbal attacks, no other phrase fits, and cruel when I can’t get a word in).

                            About food that he ‘turns his nose up at’ how about avoiding the possibility of that happening by discussing with him before you cook what are the options that day? Forgive me if you’ve already tried that. Maybe it’s not what you’ve cooked. It could be that he doesn’t feel like eating at that time. It’s difficult for you if he won’t get into such discussions with you.

                            It does sound like you need a break from your caring role. Is he very opposed to respite care so that you can have a rest? I hope that your situation improves soon one way or the other, hugs, Lynne x
                            Last edited by Lynne K; 11 November 2020, 14:34.
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                            I'm staying positive and taking each day as it comes.

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                              #15
                              Hi Lynne
                              I always ask what he wants to eat. Give him options but he replies that he doesn't mind. I can't win. He has no right to act the way he does. He used to cook but because of his hands he can no longer do so. Sometimes I think it's his way of making a statement. To make me feel sorry for him. I think it's one of many things. I feel the more I do the less he feels he needs to. Then when he trys I feel guilty and take over.
                              no I don't think he would agree to respite.
                              I'm sorry to hear about your husband but I know how he feels in that sometimes I just feel so useless and stressed I end up shouting. Then we say things we regret.
                              thanks for your nice words and hugs. They mean a lot.
                              Denise xx

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