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Thread: how much care

  1. #1
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    how much care

    Hi all hope you are all ok , I am not sure if I'm in the right place with this but here goes, Rita is in a bad way at the moment developing sores and now unable to stand at all without help. We have carers everyday and d/n go 2 times a week and speech once a month but we haven't had any physio or breathing nurses is this normal I really don't know if her breathing should be monitored ect. Only asking as I don't want to just leave things to late and if she should be having them then I will ring them xx thanks

  2. #2
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    Quote Originally Posted by scobbysnack View Post
    Hi all hope you are all ok , I am not sure if I'm in the right place with this but here goes, Rita is in a bad way at the moment developing sores and now unable to stand at all without help. We have carers everyday and d/n go 2 times a week and speech once a month but we haven't had any physio or breathing nurses is this normal I really don't know if her breathing should be monitored ect. Only asking as I don't want to just leave things to late and if she should be having them then I will ring them xx thanks
    Hi Scobbysnack,

    Worth giving MND Connect a call about this today. Our team of professionals are available on 08457 626262 or by email on mndconnect@mndassociation.org.

    Best wishes,

    Andrew

  3. #3
    Forum Member Terry's Avatar
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    Hi Scobby;

    Do what Andrew says. I am no expert but one sign of not breathing well at night are head aches in the morning due to a lack of oxygen. Tiredness and hallucinations can also be other signs but they also could be due to other things.

    Sores are a very bad thing, probably worth getting the District nurse in and also having an air moving mattress if Rita has not already got one.

    You are right, don't wait and try to get things in place before they are a real problem.

    Their should be a team around her so that you can call on them when and if you need them.

    Best wishes, Terry

  4. #4
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    Just reinforcing what everyone else says. You need a team with MND nurse, physio etc.

    Magic

  5. #5
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    Hi again and thanks I am going to ring and speak to mnd . we haven't really had a great mnd meeting yet as both times things went wrong and we didn't get to see really anybody but dietian and mnd nurse. It was October when Rita was diagnosed and she was walking with a stick then and OK as now she can't speak swallow (hardly) and her arms are now not working properly and struggling to stand let alone walk. Just wasn't sure what to expect care wise. We have carers and nurses also speech and dietian but that's it I thank you all for your comments and will give mnd a call x

  6. #6
    Forum Member Cookewitch's Avatar
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    You haven't mentioned an Occupational Therapist, ours has been a big help in getting equipment, like the hoist etc, and also in getting a care package in place when literally overnight Dad could no longer stand.

    I, like you, struggled to get all the people needed to help at the beginning and even now I'm never impressed by the help and services available, we've just been discharged by the Speech Therapist as Dad can't talk and is now nil by mouth.....I am dumbfounded as they've not tried to find us any other alternative picture based communication aids or even given us pointers. They seem to be young girls out of college that no nothing about MND.

    Sometimes as carers we have to fight to get what our loved ones need....it's a pain that we have to but the MNDA will help for sure.

  7. #7
    Forum Member AP1978's Avatar
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    You definitely should be getting more support from other areas. Hope you get it sorted asap.
    Annette x

  8. #8
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    I think a team of Physio and MND nurse will definitely helpful for you to make Rita completely ok.

  9. #9
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    As above, I think it's good to make contact and ask questions beforehand. This is a whole new experience for us all, we learn constantly, but my main concern is not to miss anything and to not regret or wish I had just asked something or someone...... We can only do our best! You obviously have concerns so follow your instinct. Best wishes x

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