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Thread: Ventilation

  1. #11
    Forum Member Gillette's Avatar
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    Hi Lynne, thank you. Yes, I'm looking forward to them coming. By the way, I must ask my 6'4" son how he feels about being a daughter! Ha ha ha. He gets fed up when I call him "my little boy" because he's the younger of my two sons, so he's sure to enjoy having a quick transition!
    Dina


    Trying to keep positive, but not always managing.

  2. #12
    Forum Member Gillette's Avatar
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    Hi Ellie,

    I certainly hope the ventilator improves my energy levels! As for the ADRT, my difficulty is in not knowing what the procedures are, what happens with them and what options there are.

    I don't have an admission date, he was hoping it would be next week. Apparently I am likely to receive a phone call one morning telling me that there is a bed for me that day.
    Dina


    Trying to keep positive, but not always managing.

  3. #13
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    Hi Dina, so pleased you are meeting your granddaughter for the first time, how exciting for you.
    Take care
    Sheila.

  4. #14
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    Hi Dina,

    I can understand how you must feel totally overwhelmed with so much going on and it must have been really upsetting not to see your new granddaughter last weekend when you were all set up to go. I am so sorry about everything.

    It will be gorgeous to see her this weekend, however so enjoy every second and big congratulations to the new mum and dad.

    Our sons are both 6 3, like their dad but they are still my little boys !

    Love Debbie x

  5. #15
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Gillette View Post
    As for the ADRT, my difficulty is in not knowing what the procedures are, what happens with them and what options there are.
    Hi Dina,

    I didn't know if that is a rhetorical question, or not!

    Whilst it is an obviously difficult topic, it is something many of us do think about and document our wishes to have control over our treatment / interventions.

    If you want detailed info on what an ADRT involves, I can give you a link BUT it's very detailed and obviously contains end of life discussion, which you may not be ready to read.

    If you want a list of a few 'treatments' involved in an ADRT (e.g. NIV) I can give you a basic idea of what may be covered.

    If indeed you are looking for info on ADRTs, leave it until after the weekend maybe...

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

  6. #16
    Forum Member Kayleigh's Avatar
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    Hi Nana Dina!

    Many congratulations on the arrival of your granddaughter - I expect you can't wait to meet her at the weekend!

    A new baby is such a joy and can be a wonderful ray of sunshine, especially during difficult times. I hope you have a lovely weekend packed full of special moments with your beautiful granddaughter.

    Love and best wishes to you and your family,
    Kayleigh x
    Last edited by Kayleigh; 26th July 2019 at 16:35.

  7. #17
    Forum Member Gillette's Avatar
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    Ellie, you are so kind and generous with your knowledge. Thank you so much.

    I don't have a problem with end of life discussions: my sons and I talk freely about it. They even told me which dates I wasn't allowed to die! We are very lucky that we are able to air the subject. In fact, I have told my sons and my partner that they should discuss my funeral this weekend, when they will all be here.

    As you say, it is better to leave researching the ADRT until Monday but I would be grateful for any help you are able to give. I don't mind whether we do it in this thread or by private messages.
    Dina


    Trying to keep positive, but not always managing.

  8. #18
    Forum Member Terry's Avatar
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    Hi Dina;

    It might be good to have a thread on it, if people know what it is about in the heading then they don't have to look.

    It's good that you can talk about it.

    Love Terry

  9. #19
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Kayleigh View Post
    Hi Nana Dina!

    Many congratulations on the arrival of your granddaughter - I expect you can't wait to meet her at the weekend!

    A new baby is such a joy and can be a wonderful ray of sunshine, especially during difficult times. I hope you have a lovely weekend packed full of special moments with your beautiful granddaughter.

    Love and best wishes to you and your family,
    Kayleigh x
    Thanks, Kayleigh.

    This evening has been a mad flurry of telephone calls and messages sorting out last minute arrangements. I had planned to meet them at the tram station but, unfortunately, the forecast is for heavy rain. Not only that but they are travelling on an earlier train than anticipated so will be arriving before my carers are likely to have finished. I shall have to tell the carers to work at double speed!
    Dina


    Trying to keep positive, but not always managing.

  10. #20
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Terry View Post
    Hi Dina;

    It might be good to have a thread on it, if people know what it is about in the heading then they don't have to look.

    It's good that you can talk about it.

    Love Terry
    Hi Terry,

    That's fine. I'll start a new thread.

    And, yes, we are very lucky that we are able to talk openly about end of life.
    Dina


    Trying to keep positive, but not always managing.

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