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Thread: Control/Communication

  1. #1
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    Control/Communication

    My Dad is severely disabled from MND and relies on live-in carers for his condition.

    He has decided to manage his carers himself and exclude mum from the ongoings in the hope that it relieves pressure off her and saves him having to explain care issues to her (which is a lot of effort using the Eye Gaze system). His idea is to see mum "socially" and involve her in anything care related.

    This has resulted in mum feeling really forced out and like a stranger in her own home as she is not involved in his care issues but then also expected to help-out when dad needs things doing outside his capabilities....

    Overall it has forced them further apart and I was wondering whether anyone had encountered similar issues or could suggest a ways to involve mum without causing extra work for dad.

    Is it common for sufferers to manage their care independently?

    Any thoughts or advice much appreciated!

    Many thanks.

  2. #2
    Forum Member Terry's Avatar
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    Hi;
    Welcome to the forum. It is great that your Dad is capable of communicating so well using "eye gaze" and good for him to organize things. It is a shame that your Mum has not been involved as she still needs to be in the link.
    I think that your Dad needs someone that will be consistently there as things progress. He will probably find things harder and if there then is a change of live in carers it would be very hard for them.
    Best wishes, Terry

  3. #3
    Forum Member john's Avatar
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    This seems like something most could access. Just needs someone like mnda to run with it and make it available to anyone who needs it instead of the stupidly expensive stuff that currently gets promoted. 10.000 a time stuff is way beyond most people and most can no longer do things like this themselves nor do they have someone who can create it for them. The clip looks to be about 3 years old which means it could have been helping others sometime ago.

    http://www.engineering.com/DesignerE...raw-Again.aspx

    John

  4. #4
    Forum Member Terry's Avatar
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    That seems amassing John, thankyou.

    It is the worse thing not being able to communicate, and I have experienced other Mnd people in that position and the Mnda did not act quick enough or have suitable equipment. They relied on a young speech therapist with little or no experience to advise, teach and get the equipment. The whole thing was pathetic and only frustrated the Mnd person further. I did move things along faster by testing things and giving advice to the Mnda about what was required but people did not use my information and it was a total failure.

    Sorry should be in the rant thread.

    It would be great to have something simple in place for Mnd people in this situation.

    One way forward, Terry

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