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Advice on motor neurone disease please

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  • Music man's wife
    replied
    I'm so sorry to hear about your Dad. I hope you get some comfort from knowing you did your very best for him. X

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  • Newbie17
    replied
    Such sad news. So very sorry.

    Love Helen

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  • KLH
    replied
    Thank you everyone for your words. I appreciate all the love and advice I've had here and wish you all the very best xxx

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  • Deb
    replied
    I am so very sorry for the loss of your Dad KLH,

    Thinking of you and hoping you have love and support around you.
    Love Debbie x

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  • Terry
    replied
    I'm so sorry for your loose KLH;

    Hope you've got someone there to help and guide you through it.

    Hugs Terry

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  • shrew
    replied
    so sorry to hear of the sad loss of your lovely Dad. Thinking of you at this extremely sad and difficult time xx

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  • Ellie
    replied
    Heartfelt condolences to you KLH.

    Love Ellie.

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  • Barry52
    replied
    Hello KLH,

    I’m sorry to hear about your dad passing away last night. He is now free from this horrendous disease and hopefully in time you will be able to look back on the happier times in your lives.

    Please accept my condolences.

    Barry

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  • Kayleigh
    replied
    Dear KLH,

    I'm very sorry to hear that your Dad has passed away.

    Your Dad was a brave gentleman. Like you, I was hoping he would have more time, but, last night, the time must have come for him to slip away peacefully - may he rest in peace.

    You did all that you could for your Dad to help and support him. it is wonderful that you spent so much time together. He always knew how much you loved him.

    I hope that memories of all the happy times you spent with your Dad are a comfort to you and that, in time, those memories will ease the pain of your loss.

    I hope you have friends or family who are able to be with you, and support you, at this very sad time.

    Please accept my sincerest condolences.

    Thinking of you,
    Love Kayleigh xxx
    Last edited by Kayleigh; 2 March 2019, 10:33.

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  • KLH
    replied
    Hello all the hospital rang to say he died in the night. I turn my phone off at night. I didn't think. I thought he had longer. Trying to work out what to do now

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  • Terry
    replied
    Hi KLH;

    Pleased you've got someone you trust holding your hand. Great idea, someone else to fight your corner.

    Hugs Terry

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  • shrew
    replied
    I really hope that your Dad has a settled night, keep us updated

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  • KLH
    replied
    Thanks everyone for your input, it is much appreciated
    I'm going tomorrow with a friend who's a nurse and has really helped me get things moving so far. Seriously, we would be nowhere now without some pressure. It's a system isn't it, it doesn't, inevitably, deal with individuals
    Palliative nurses have been nice but minimal input
    Will see how it all is tomorrow

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  • shrew
    replied
    so sorry he’s so unwell. take care x

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  • Kayleigh
    replied
    Dear KLH,

    Please don't think you have done anything wrong. You are always supportive of your Dad and you do everything you can to help him. If you hadn't pushed for the referral to the hospice, then that might not have happened.

    Your dad does have the right to refuse to wear a mask. Unless someone permanently holds it on his face, I don't know how they will be able to go against his wishes. If they provided masks that were comfortable to wear, then patients might be more inclined to use them. Some patients decline wearing a mask because it makes them feel claustrophobic, and that is their decision to make.

    Your dad might be feeling very tired, and this might be affecting his ability to make decisions quickly and communicate with nurses and doctors etc. MND takes its toll on everyone affected by it - it's not an easy time for patients, or their families.

    I do hope that the palliative nurse is giving you and your Dad lots of support. The palliative nurse, along with other hospital staff, should be making sure that your dad is being made as comfortable as possible. As Terry has already said, it should not be left to you to check that your Dad is being cared for properly while he is in hospital.

    As you know, I have read all your posts since you joined this forum - you always have your Dad's best interests at heart, and I am sure he must be very proud of you for being such a wonderful son or daughter (sorry, I don't know if you are male or female).

    I think that you and your Dad are being very brave, at this very difficult time in your lives.

    Try to get some rest, and a good night's sleep, if you can.

    Kayleigh x
    Last edited by Kayleigh; 1 March 2019, 21:36.

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