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    Hi
    I am caring for my mother suffering progressive bulbar palsy. She has a peg tube and a bipap machine for nights. She is not following advice of professionals. She refuses to use the bipap machine or even the walker as advised by the physio. She is fine mentally. Is it ok to let her decide on the treatments or should I insist?
    thanks


    #2
    A warm welcome to the Forum, Caddy - sorry about your mum's diagnosis.

    That's a very tough question to answer, unfortunately, and the outcomes will depend on your mother's temperment...

    Honestly, we can be a stubborn lot and often it takes a crisis point to spur us into action - e.g. a bad fall, bad breathing, a scary choking episode etc.

    Your mum may be just overwhelmed by her illness, is in denial and/or very frightened of what is happening to her now and in the future, so she's doing what many many people do and carrying on as normal. If she genuinely knows how each bit of kit will help her and refuses to use it, ultimately that is her choice to make, albeit very difficult for you and others to accept.

    If you think fear is behind it, try finding out her worries which can be addressed in bite sized pieces.

    Take care.

    Love Ellie.

    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Hi and welcome to the forum,

      As Ellie says it often takes a crisis for us to admit we need practical help and it is very hard to insist on it for someone else. It must be so difficult for you to watch.

      It took me too long to accept I needed a wheelchair and I was determined to try and walk even though it led to falls. Now it seems mad to resist ( everyone was warning me !) but maybe it is about needing some control.

      Good Luck... I really feel for you and your mum is lucky to have you.
      love Debbie x

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        #4
        I think that’s probably it. That is the only thing she has control over now and I’m sure she is in denial too. Thanks for the insight.
        caddy

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          #5
          Hi again
          I joined a forum support chat today and there were several MND sufferers and some carers. The common theme today was to concentrate on the positive which was inspiring for me as a carer who is struggling to keep up. I don’t feel so alone now and understand that lots of carers have similar issues to me including guilt that I’m not doing enough. I’m doing my best but still feel it’s not enough for mum. Thanks for listening

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            #6
            Hi Caddy,

            Also a carer here...and welcome!

            Being in control is huge and often the reason I try to take a step back and put myself in my partner's shoes. 'How would I feel if'....even doing this doesn't help sometimes haha but got to try. But when it comes to decision making it can be tough going so I get your predicament. You want what's best, but you need to allow her to have as much control as possible. If something is very dangerous all you can do is reason with her and convey why you're concerned. Always better though when it comes from a professional as otherwise they might think it's just opinion.

            Covid is a current example of people not being in control and hating it....and so hearing of people previously not being able to go on their dinner reservations and moaningamoaning it due to covid restrictions, is just a spec of what MND puts on the table daily for those affected and the lack of control therein.

            ​​​​

            Tess x

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              #7
              Welcome Caddy. Lots of wise words and I know I was one of those stubborn ones who didn’t want to admit I couldn’t manage. But life was so much easier when I accepted help. I guess we need to find that balance for ourselves - aided by the concerns expressed by those who care for us.

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                #8
                Hi Caddy
                i know it must be very difficult for your mum to accept these changes in her life and for you to watch I can only speak from my own experience. I fought so hard to carry on as normal. I was an independent person and active. MND has kicked in. I fell off the first step on the stairs and ended up in hospital and my husband had stairlifts installed. I have a riser chair and now have a mobility scooter and raised toilet seats. If I am honest I couldn’t conduct my life without these items now as it gives me some independence and I would be fully reliant on others to help. My family wanted me to have these items sooner but I wouldn’t listen I had to make up my mind and the struggle just got too bad that I gave in. It is better for me and
                hopefully your mum will come round in time when she is ready too but it takes a lot of energy out of you to struggle on and is it worth putting yourself at risk.
                you are doing a grand job and i feel for you. Acceptance is hard to deal with.
                take care
                madge

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                  #9
                  Hi Caddy

                  I can't add much to the excellent advice above.

                  Caring for any relative is very difficult and complex, especally if they are having a hard time adjusting. My mum got 3 different doctor's opinions, when she got Alheimer's at 57. Only meeting positive fellow people living with dementia did she change her attitude to acceptance.

                  Husband newly diagnosed but I have experience as a carer for mum and dad with different things. Get the professionals to be the ones to chat about why these things are necessary. When things get very difficult she may come round. So you are not the nag or the bad guy. If the person you care for is stubborn just gently remind them that it is to make their life easier not yours. It is really hard to watch someone you love struggle, I feel for you. My mum's consultant said something wonderful, "Yes you can continue to struggle to work the last years of your 50s but would you not be better using your energy into going thing you love with your family". Accepting changes in your health can be hugely difficult, can she talk with the specialist nurse.

                  As a carer (for any condition), getting support both practical and emotional is very important. The caring journey can be a very long one and unpredictable. Talking to others with experience helps massively. Which is why I joined this lovely group.

                  Take care

                  Dee

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