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Thread: What next?

  1. #1

    What next?

    Hello all!
    First I would like to say what a great idea it is having this forum. I have logged on numerous times but only now felt the need to seek advice.
    You see my beautiful, glamourous mum has MND. I find it very difficult to visit her and see the decline although I do. (she has plenty of visitors may I add). She also has COPD, cannot use her limbs and is being fed. I often wonder am I wrong to wish this to be over? She needs help with breathing. How long can somebody go on like this? How long does she have? I do t seem to get any answers from the nurses.
    She suffers panic attacks through the fear of this awful disease and because of this may never be able to come home.
    This is effecting me a lot, effecting my ability to work, open up to people etc.. I just donít know what to do

  2. #2
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Candy & welcome.

    Sorry to hear about your mum.

    Is she in a hospital or care home?

    With proper meds and support, her panic attacks shouldn't prevent your mum living at home, all things considered. Does she have good medical support?

    You didn't say when she was diagnosed but, really, it is very hard to answer your "how long" question. Everyone is different and your mum's COPD will complicate things - has she a BiPAP machine to help with breathing?

    I'm sorry your life is affected so much by mum's diagnosis - I think counselling would help you and you could ring the MND Connect Helpline.

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Candy and welcome to the forum;

    Girl, you're asking some difficult and touchy questions.

    Sorry to hear about your mum and that she is away from home being looked after.

    Please keep visiting her and talking about things that you are involved in.

    I don't think that you are wrong wishing it would end and your mum might feel the same way, it's hard to say.

    People can live for years but don't normally.

    She can have medication to help with panic.

    What help is she having to breath?

    Best wishes, 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.

  4. #4
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Hi Candy, sorry to hear about your mum's illness as and how it is bearing down on you. Terry is right that councelling may help. Take care. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  5. #5
    Forum Member Twinkle's Avatar
    Join Date
    Aug 2018
    Hi Candy, Sorry to hear about your mum. Xxx

    I can understand you not wanting to visit your mum whilst she's ill. Our son doesn't visit as much as he should do as he finds it very upsetting. He finds the changes in his dad very hard to deal with as you're finding it with your mum.
    Our two daughters see us regulary so they're not shocked or upset.

    My advice is to keep seeing your mum so the changes aren't that noticeable to you, and you might be able to cope better at work etc.


  6. #6
    Forum Member
    Join Date
    Oct 2018
    Hi Candy

    I completely understand where you're coming from and think it's normal to feel this way. I've asked myself the same questions as you. The way I try to deal with it is think what I can offer Dad to make life any better - it may be practical things or just being there. Then when I'm not there I try to turn off, knowing that Iv e done all I can. I used to feel in a limbo like I was doing nothing for Dad but then just suffering and worrying - being there with him , and doing something practical helps. When I look back I'll know I've done all I can.

  7. #7
    Forum Member Tim-griffiths's Avatar
    Join Date
    Oct 2017
    Lambourn Berkshire england
    Hi Candy
    I'm sorry to read about the reasonably had to join us here on the forum. You probably are going through a whole range of emotions and this is, I believe , normal ( it certainly was for me when my wife was diagnosed ), all you can do is be there and show support.

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