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Thread: Communication methods

  1. #11
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    Hi Steve. I keep coming across your posts and they are GREAT! Chirpy, positive, I really like reading them. They cheer me up - so keep them going Steve!

  2. #12
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    Hi Terry, thank you for this information. We are desperate for anything that will help her to feel not so isolated. I keep passing on all this information to her husband (as we live 200 miles away), but he is looking in to things, God love him as he is 70 years old! But I will let you know how we get onx

  3. #13
    Forum Member Steve's Avatar
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    Cheers Dee, I don't feel it. I had a chest infection which put me in hospital for a month. I have been in the Hospice for three weeks. They think it's hilarious that I ping the football onto the tele from my computer with my mates ordering curry in.

    I am going to ask if we can brew tomorrow, got to have beer at Chrimbo!

    They have to get tired of me soon.
    sorry about the absence of caps in my posts, my shift key is broken.

  4. #14
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    Sister in Law Seems to Have Given Up

    Hi to all of you. I have been passing lots of information about communication aids to my sister in law's husband. He rang us this evening when he came back from the hospital and he said that she had intimated quite strongly that she wasn't interested in pursuing any forms of communication!

    I am not sure if that means that she has given up, or given in, or has just generally had enough of this awful disease! She has had it for over 3 years now, and the last 12 months she has lost the ability to do everything. She has just lost the use of her ability to use the Ipad, - her arm is really swollen and her hand wont stop shaking - she is just so 'stiff' everywhere!

    We only get to see her once a month as we live near Manchester and they live in Wales, so it is difficult freeing up time when you are working etc to get down there. But in the last 12 months, her situation has deteriorated so quickly. At the beginning of the year she could talk, albeit it with great difficulty and not that clearly. She could eat food, with a bit of spluttering, and she could kind of walk a few steps with a walking frame. But now that little body can't really do anything other than breathe.

    I struggle when we do see her as I am trying so hard not to talk about anything that would make her think - I used to do that, or I really miss doing that. But even things that I find hum drum - like walking the dogs in the rain, I keep thinking that I bet that she would love to be able to do that! I find it so hard to imagine how it must feel to have this awful condition. And I rack my brains trying to think of what we could do.... to make it better.....to make any part of it better. I am used to being someone who finds solutions, but this has me completely stumped! I keep suggesting things, and she keeps declining them, not that that bothers me, an idea is only an idea, nothing more. But she can't tell us what she wants now.

    She is due to be discharged from hospital soon, well this week or next, so at least she will be at home with her husband, and I know that she hates being in hospital, so at least that is a blessing! God only knows what I am trying to say on here! I think that I am trying to admit to myself that there isn't anything 'active' that I can do to help. I think that nearly all my life as a grown up, I have been able to sort out most problems in my and my families life. And if I couldn't sort it out, I have been able to make things much better than they were. But with MND, it doesn't work that way.

    I haven't even got the will to try to motivate her to keep fighting, because that feels more like bullying than supporting someone who wants to give up, give in. I think that I have just had a light bulb moment! Its quite therapeutic, writing things down! Maybe I need to just accept her decision to give in, and to stop looking for ways to prolong the fight.

    We are with her again next weekend, and I will be 'with her' in both mind, body and spirit I will just be with her and love her! x

  5. #15
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    Hi Steve. I have tears rolling down my face reading your reply! You are just so positive! Since my sister was diagnosed it was like the world had ended. They didn't go out anywhere, it was like their lives had ended! All that time, that precious time that they had, was wasted on locking themselves away. But for the last year she has been unable to do virtually anything. But its not just the MND, its been their reaction to it. It has never been about what can we do, its always been about what we can't do! And that is so sad, or at least it seems it to me?

    Your mindset just seems like a breath of fresh air. You do look a lot younger than her - she is 67. But I am sure that a positive mind set must count for a lot. I might be wrong coz what do I know. But your words and your photograph just typify positivity. So good on you Steve! Which hospice are you in ? I will bring the beers myself if you want!
    Dee x

  6. #16
    Forum Member Steve's Avatar
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    St Luke's in Sheffield, the irony is I have been nil by mouth for six months, I just enjoy the process.

    I don't think it makes a difference to prognosis but why make everyone miserable? I have squeezed every bit out of my time with MND. I wish it was longer but hey ho, nothing I can do is there?
    sorry about the absence of caps in my posts, my shift key is broken.

  7. #17
    Forum Member Terry's Avatar
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    Hi Dee,

    It would seem that she has given up. Maybe she will think differently when she gets back home but I fear by what you have said that won't happen.

    As for what to talk about, don't try to be too careful and just talk about things that you have been doing etc.

    People are all different and I have known quite a few over seventy year olds with Mnd that have been upbeat so to speak.

    I think that I have a similar attitude to Steve's but doubt that I will be so when I get to similar situation.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  8. #18
    Forum Member Terry's Avatar
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    Hi Ellie and Steve,

    I won't wash my mouth out as I believe that use two cheat. I think that you use a switch or two as well.

    Steve, I would be careful with what you write, the benefits people could be looking in a say that you could get work as a typist and take away any support.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  9. #19
    Forum Member Steve's Avatar
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    lol Terry, work doesn't effect PIP, they don't want to discourage work.

    The same with social support for care. They weren't interested in wages, only savings and being relatively young we don't have many.
    sorry about the absence of caps in my posts, my shift key is broken.

  10. #20
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    Hi Terry. Thank you for your reply. I don't think that me sister in law has ever been upbeat even before MND. She has always been a kind of half empty as opposed to half full person. And this has just continued through the MND. I suppose that is what I think is the really sad part. She could have had at least 2 years living her life with MND instead of just locking herself away from people and places and activities, but now the chance to do all those things has gone and I just think that is really sad. But maybe she doesn't? I hope that she doesn't regret the last 2 years, but she never discussed it, so I guess I will never know!

    I think of her often and worry about her and feel devastated for her. Prior to her becoming ill, I didn't know much at all about MND. I suppose that's just like most other people until it touches your life. And then, well, me anyway, I double count my blessings every day after seeing what my sister in law is going through and has gone through up to now. God bless you Terry.
    Love Dee

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