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  • Bowler
    replied
    Originally posted by Heather R View Post
    I really take my hat off to you carers, what you do is amazing, but must have a big toll on you as well. Take care of yourselves and love to you all x
    Thank you Heather. This thing is crap for everyone it touches

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  • denise
    replied
    Thanks heather that was really appreciated. ๐Ÿ˜˜

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  • Heather R
    replied
    I really take my hat off to you carers, what you do is amazing, but must have a big toll on you as well. Take care of yourselves and love to you all x

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  • denise
    replied
    Thanks deb and Phil. It just feels like you're not doing enough. It's like being at the seaside digging a hole and it keeps filling up with sand.
    I'm going to have to hit the gin and cranberry juice minus the gin ๐Ÿ˜ž

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  • Bowler
    replied
    Deb thank you for your lovely words

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  • Deb
    replied
    Tess, Phil, Denise and all carers.

    Being a carer for someone with MND is heartbreaking. Not only have you lost your hopes and dreams for the future but you have to watch the person you love struggling with this disease.

    Please never feel guilty for the incredible job you are doing ( or have done , Phil and furthermore you are stil supporting us ) or talk about shame. My husband has to look away when I'm struggling or leave the room and I know he's hiding his feelings. Crying or shouting in frustration is fine. You are only human and you are coping with what is an impossible situation, with no happy ending.

    Big hugs and admiration to you,
    Love Debbie x

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  • Bowler
    replied
    Okay Denise, firstly you will not be doing a bad job of feeding Stephen. How do I know well because he has survived your cooking for the past 40 odd years so get that out of your mind.
    Secondly we all get those feelings of inadequacy, anger and either crying or shouty. I think it goes with the role you are performing. Just like those who have been struck down with this evil disease canโ€™t help laughing or crying Carers canโ€™t help those feelings.
    Thirdly you are doing all this in a country where you donโ€™t speak the language and have absolutely no one on hand to help so tell me how is that inadequate.
    Fourthly unless you are doing something for Stephen stop what you are doing. Put the kettle on, get a couple of biscuits and go out in the garden and shout at the plants.

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  • denise
    replied
    No Phil I think it's not just men. I have found I'm having difficulty crying. I wish I could. I just want to shout and I feel so angry. Things just feel so hopeless. Like today. A long drive leaving the house at 7. Doctor late. Off to next appointment. Made to feel like I'm not doing a good job of feeding my husband. He doesn't even volunteer a kind word. Then I have to get us something to eat in the supermarket. Drive home then unpack the shopping and put it away. I'm hungry, tired and exhausted and feel useless.
    Stephen is supposed to have 3 months physio. They used to pick him up and drop him back home. He'd be gone about 3-4 hours. How is he supposed to eat? I don't agree with overnight feeding as his bed looks like something from the exorsist. I am so fed up with everything. ๐Ÿ˜ข

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  • Bowler
    replied
    Tess One if the problems with being male is that it is built into us not to cry which is fine except we tend to shout instead which to my eternal shame is what I did when like you say the pressures built up. I wish Iโ€™d cried now.

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  • Tess
    replied
    Crying is exhausting but today I had a wee sesh. Probably more to do with lack of sleep building up these last couple of weeks. Usually quite matter of fact when dealing with appointments and my partner's daily care but the odd day every few weeks I have a moment. My partner has always been more in control of his emotions, don't get me wrong we've had a sob together when we were in the testing stages and we just knew exactly what it was. I do try not get too teary Infront of him, but when you got to cry, you just got to cry.

    I remember nearer the time of diagnosis I had a bank appointment and the sales advisor started asking if I had thought about looking into house savings/mortgage funds or something like that for the future and with that word 'future', i just broke down and I had to explain that this isn't something I'll ever get with my current partner and it broke my heart. I think I must've given him a fright as he then toned down all the sales pitches and just carried out what I had asked him to do in the first place. I know the guy was just doing his job, so pretty unfortunate when I showed up.

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  • Ellie
    replied
    Great minds, eh GaryM It'll be mind-over-matter now not to think of Pavlov when you see the inhaler ๐Ÿ˜ƒ At least you can explain to Louise why you laugh at such times.

    I'm way too young to know who Bernie Winters is ๐Ÿ˜‰

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  • GaryM
    replied
    Originally posted by Ellie View Post
    Please don't take this the wrong way GaryM but could it be a slight stress/anxiety 'reflex'?

    I almost have a Pavlovian laugh response when a particular carer comes wielding my toothbrush, she has an uncanny knack of messing things up... I put this down to my emotional lability, which I am not suggesting is what's happening with you!

    Hopefully we won't read a post from you saying you've an inhaler lodged in your throat ๐Ÿ˜‰

    Love Ellie.
    It certainly could. I was going to put a reference to Pavlov in my post, because that's exactly what it feels like. I do suffer from emotional lability and it's obviously an example of that. Seems to be worse in the evening. I sound like Bernie Winters, if anyone can remember him.

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  • matthew55
    replied
    I'm okay with it but not being able to breath or see during crying bugs me ๐Ÿ˜x

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  • Heather R
    replied
    Yes that is something I was thinking the other day, that I can't even CRY properly any more, only sort of gasping breathless sobs. x

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  • Ellie
    replied
    I can't cry either - in my case it's because I don't have enough breath to cry ๐Ÿ˜

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