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Not sure how to handle wife's crying

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    #16
    Hi Rachel, I know I can call and get the support or ask questions, even though I know all this I still have trouble asking ( since Mary's diagnosis ) just me unafraid
    But thank you, I always have concerns but only because it's nothing I've come across before and I feel lost and helpless because I can't protect her against this cruel disease
    Tim

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      #17
      just think of this motor neuron disease is much more well-known now people know what it means when you say the word ,I told people on the autism forum about my mother and I they said oh how terrible that's ALS isn't it !?it's terrible!
      I didn't think people would know what it was ,I think the ice bucket challenge has changed peoples knowledge.
      I didn't ask for help at the very start! but it was because I didn't know how ill she would become ! we'd met an MND Association support group leader for Sunderland !who only had fasciculations in his arm and nothing else ! for the last 20 years !so I was slightly confused .
      get used to asking people for help !!!!!!I found it very strange ,I burned out because I didn't ask for help ,it's not a nice experience burning out.

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        #18
        Hi streetwise,
        I feel burnt out already , both physically but even more so mentally, im constantly worrying about her, especially when im at work,I'm a postman and most of the people on my delivery ( which is in the village I live in ) know the wife, I'm constantly getting ask how she is, have had offers of help ( never accepted, that I'm imposing thing again I guess ), and when I get home the first thing I do us wash , change and cleaner peg, then a cuppa ��, so even at work I can't get 5 mins of not thinking of the wife. Luckily she still has full mobility, but her hands are weak, her voice virtually inaudible and she said last night she is sticking to ensure, soup and weetabix in hot milk as she is finding solids difficult to swallow.
        I will ask for help ( I did initially ) but it's as hard to get into that mind set as it is to comprehend this cruel disease.
        Tim

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          #19
          Hi Tim i know exactly how you feel i care for my mum 24/7, and i am lucky if i get 2 hours sleep straight, sometimes i wonder how i do it but you just do, like you i dont like asking for help and my mum bless her dosent like bothering me but unfortunately thats life you have to get on with what it throws at you, my mum was only diagnosed just before christmas and also slurs her words badly, she has muscle weakness and is very unsteady on her feet, so wheelchair when out and my arm when in, although she cannot walk far, i dont know how you cope with working full time as being a carer is a full time job, i suspect you are probably shattered and that makes everything much worse plus the worry of leaving your wife and how she is coping, its horrible isnt it, what a nasty disease, like you said its the helplessness it feels so final, its like thats it, no ones fault, can you not have carers in, not sure who you would ask for that but it would make you feel better whilst at work, at least it may take some of the pressure off, we were offered carers but cannot remember who by, sounds silly but there has been so much going on, but at least it would take some of the stress from you whilst at work, you have come to the right place, you wont feel so alone on here we are all fighting the same battle and it helps to do it together. love jo xx

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            #20
            Hi Tim / murrjo 1,
            I can fullly understand how you feel right now. My wife D has PBP /ALS and has recently become quadraplegic. She also suffers from restless feet syndrome. We have reached the limit on medication so keeping her comfortable is difficult . Late nights and disturbed sleeping patterns have become the norm for both of us lately.
            I have always throughout D,s illness used all the support systems available to me to make my job caring for D as stressless as possible. I have asked for, and it has been agreed, that an overnight carer will come in to look after D,s nightime requirements. This will be on an alternating night basis for two weeks to give me some respite. It will be reviewed then to "see if things have improved" with D,s sleeping, i.e care cost concerns from CHC.
            It has been alluded to by some astute MND sufferers who post here that they understand the effects of their illness on their decisions and how they affect their carers. Rightly pointed out too is that not all MND sufferers are able to reason through this. D has raised her objections to "strangers" in her house overnight . I have gently pointed out to D that this is something beneficial to us both.
            The important thing is to shout for help if you need it, dont just ask. Also, what is good for you is highly likely going to be good for the person you care for, dont get to burn out point. Keep safe
            Regards Steve

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              #21
              Hi murrjo and Steve
              The CNS did suggest someone coming information a while whilst I'm working but she refuses. Spoke to my boss today and he said I could just disappear if I get a phone call and return to work when I can ( so flexibility there I suppose ), she can be very stubborn sometimes, and gets frustrated very easy, but I'm luckier than most assuredly still have full mobility, although her speech has gone, and her swallowing is getting worse, the mnda volunteer came yesterday and I said I felt guilty eating a meal while Mary has soup or a weetabix in hot milk, so I tend to not eat properly, she did give me a lecture ( not nastily ), about looking after myself for Mary's sake as well as my own.
              Tim

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