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Thread: No To Peg and No To NIV

  1. #1
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    No To Peg and No To NIV

    Hi All,

    I attended the first MND clinic multi-disciplinary meeting with my Gran yesterday to check her over and see what her progression is like etc.
    Unfortunately, the neurologist said it's the fastest-progressing case of MND he's ever seen, so that's not good news, but we've been told the breathing hasn't become problematic just yet. The second leg is now starting to become affected (can't wiggle toes and muscles becoming stiff), so walking is going to be impossible soon (bearing in mind we only got a diagnosis in March and, at that point, she only had drop foot in the one leg, with the tiniest bit of swallowing/dribbling so we've now progressed to near-full paralysis in the left leg and the right leg repeating the same pattern, plus now the coughing/spluttering/dribbling/very slurred speech in the space of a month and a half).
    The speech and language therapist is going to get in touch soon because swallowing and talking are now becoming difficult/tiring for my Gran.
    Yesterday was the first time PEG was mentioned to my Gran by the professionals (I've read up all about it so understood what it entailed beforehand). I knew she was going to refuse it, but it was still quite a lot to take in when she said as much out loud. She also said that she doesn't want anything to help her breathe (so, no NIV, either).

    I understand why she doesn't want them- to use her words 'I don't want to drag it out'. It's an incredibly brave decision to have made and one that only she could have made for herself, but I am now terrified about how and when the 'end' is going to come. When she becomes unable to eat, I am worried she is going to either starve or choke- am I meant to just watch this happen without being able to do anything about it?

    I am just wondering if anyone else has made this decision or known someone who has made this decision before? I really just want to know what to expect so I can be as prepared as possible so I can be the strongest support that I can be to my Gran.

    Thank you all (and also sorry if I have posted this in the wrong forum- I wasn't overly sure where to post!)

  2. #2
    Forum Member Gillette's Avatar
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    Hi Broostine93,

    I'm so sorry that your Gran has MND and that it is progressing so quickly. It is such a lot for you both to cope with.

    I can completely understand your Gran's decisions concerning a PEG feed and NIV and your worries about what those decisions will mean. Up until a couple of weeks ago, I had made the same choices as my MND has been progressing fairly rapidly.

    Does your Gran have access to a specialist MND nurse, or a palliative care nurse? If so, it would probably be worth talking to the nurse about your worries concerning how those decisions will affect your Gran and how she copes with the disease. If your Gran does not have access to the nurses, ask her GP for an urgent referral. There should be plenty of support available from health professionals. This forum is also a very supportive environment, so do ask questions.

    Wishing strength and courage for you and your Gran.
    Dina


    Trying to keep positive, but not always managing.

  3. #3
    Forum Member Ellie's Avatar
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    Hi Chrissie,

    Firstly I'll say please don't have those awful images in your head of your Gran's future - with proper palliative care, that's not what happens. Medication is given to relieve both physical hunger pains and for air hunger, so the person won't suffer distress.

    The SLT will show Gran the safest way to eat and drink whilst she can - swallowing with her chin tucked down, food consistency changes, fully concentrating on eating (no chat) etc. The SLT will also advise on speech/communication aids.

    If your Gran isn't yet linked into a hospice, now is the time to do it and start building a relationship with them. Many hospices offer community care, 'Hospice at Home', and your Gran could attend Day Hospice (1 day per week) for nursing, physiotherapy, OT and complementary therapy services.

    Re progression: because your Gran had symptoms for a year prior to diagnosis, quite a large proportion of motor neuron damage had ocurred by time of her actual diagnosis. Nearby muscles can only compensate for so long before also failing to function. Unfortunately elderly people do seem to progress fast, or faster, than younger people...

    Your Gran is certainly not alone in declining feeding tube or NIV and for the same reason.

    Please do get in touch with her hospice - they are great places and offer support to family members too.

    Big hug to you Chrissie.

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

  4. #4
    Forum Member Kayleigh's Avatar
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    Dear Chrissie,

    I'm sorry about your Gran becoming very unwell so quickly.

    It's such a personal decision about whether we decide to accept interventions such as a feeding tube - but, whatever we decide, we should not be left alone by healthcare professionals to deal with everything. There should be ongoing support for us and our family, from our local hospice and other professionals such as an MND nurse and our GP.

    Most hospices have their own website and there is also information on the Hospice UK website:-
    https://www.hospiceuk.org/about-hosp...find-a-hospice

    A referral to a hospice shouldn't take very long and can usually be done by a GP or someone else like an MND nurse. Even if your Gran hasn't been referred yet, I'm sure the people at your local hospice won't mind if you phone them to talk things through and to ask what particular support they can offer you and your Gran.

    You are such a wonderful granddaughter, devotIng so much time and energy into looking after your Gran and making sure that she gets all the care she needs. I hope you have peace of mind that you are doing every thing possible for your Gran to make her life as comfortable as possible.

    It can't be an easy time for you, I hope you have support from family and friends as well.

    Thinking of you,
    Love Kayleigh xx
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  5. #5
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    Hi Gillette,

    It was explained to us yesterday that the OT/Physio Team are a replacement for the MND Team in our area of the country- in fairness, they have been brilliant at supporting us.

    Hi Ellie,

    Thank you for putting my mind at ease- it was something I was horrified at the prospect of. We were at the MND clinic at Myton Hospice yesterday for the multi-disciplinary meeting, but this is the first and only contact we've had. Day Hospice was offered/suggested and my Gran turned it down- she doesn't seem to want any complimentary therapies, either (she's a stubborn woman!)

    Thank you both

  6. #6
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    Thank you Kayleigh- very kind words and so greatly appreciated

    I do think we've got the support available to us- it just seems my Gran is unwilling to reach out for it, preferring to 'go it alone' as much as possible (as has always been her nature, unfortunately).

  7. #7
    Forum Member Kayleigh's Avatar
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    Dear Chrissie,

    I can understand your Gran's reluctance to accept help, because letting go of our independence is not always easy to come to terms with.

    It sounds like your Gran is probably quite a private person - and so being fussed over and looked after by strangers might make her feel anxious and uncomfortable (and I do empathise with her!).

    Visiting a hospice for complementary therapies etc is not everyone's cup of tea - but perhaps your Gran might warm to the idea of some support at home, if the hospice offers it.

    Perhaps a nurse will be able to have a short visit with you and your Gran at home - so that she can get to know someone from the Hospice while being in her own environment.

    Although I don't always find it easy to accept help, the hospice nurses always put me at ease because they are very kind and they have an understanding of what I am going through.

    Even if your Gran doesn't want support from the Hospice, hopefully you will be able to get support and advice from them. I have been given the telephone number of the nurses at my local Hospice, which is very re-assuring for me and my family as we can get advice from a palliative care nurse quickly, if we need it.

    Its good to hear that your Gran has a very good physio and OT.

    Love Kayleigh x
    Last edited by Kayleigh; 2nd May 2019 at 19:34.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  8. #8
    Forum Member Lynne K's Avatar
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    Quote Originally Posted by Kayleigh View Post
    Dear Chrissie,

    I'm sorry about your Gran becoming very unwell so quickly.

    It's such a personal decision about whether we decide to accept interventions such as a feeding tube - but, whatever we decide, we should not be left alone by healthcare professionals to deal with everything. There should be ongoing support for us and our family, from our local hospice and other professionals such as an MND nurse and our GP.

    Most hospices have their own website and there is also information on the Hospice UK website:-
    https://www.hospiceuk.org/about-hosp...find-a-hospice

    A referral to a hospice shouldn't take very long and can usually be done by a GP or someone else like an MND nurse. Even if your Gran hasn't been referred yet, I'm sure the people at your local hospice won't mind if you phone them to talk things through and to ask what particular support they can offer you and your Gran.

    You are such a wonderful granddaughter, devotIng so much time and energy into looking after your Gran and making sure that she gets all the care she needs. I hope you have peace of mind that you are doing every thing possible for your Gran to make her life as comfortable as possible.

    It can't be an easy time for you, I hope you have support from family and friends as well.

    Thinking of you,
    Love Kayleigh xx
    Hi Broostine93. I'm really sorry about your grans MND progression and your worry. I cannot offer better advice Than Kayleigh and Ellie have already given. You are so special to care so wonderfully for your gran. The only thing that I can add and I know that it won't be easy and you might be doing this already: treasure every moment while you can and try to have laughs together when you can. I send you electronic hugs. Take care of yourself. Lynne x
    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.

  9. #9
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    hi Broostine93. sorry to hear of your Grans decline x

  10. #10
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    Hi guys,

    Thank you for all of your advice

    Kayleigh- I think she's more 'fed up of loads of people coming in' to her house all the time. I think she's so used to living alone and having her own space to herself that, though she needs the help physically, she'd rather not have to deal with people. It's just one of those things that's been thrust upon her so quickly so there's not been much time to adjust (personally, I think it's brilliant that everyone has been around and gotten things done so quickly, as I know many have a long time to wait for things to be put into place, so I'm thankful for that).

    Lynne- I am certainly trying to make some memories, though I am finding it difficult to do it when there's so much running around/housework/etc. to be done every day. We are getting quite snappy and shouty with each other sometimes, but we're resolving arguments quickly and I actually think it's healthy that we're venting our frustrations out and then talking about it all when we've calmed down. Unfortunately, it seems that all the other family members are getting all the laughs and I'm getting the sadness/anger/frustration that's left over (though, I know that this is only because my Gran is so close to me that she feels she can be completely herself, so it's kind of a good thing, in a weird way!)

    Shrew- Thank you for having us in your thoughts- it's very kind of you

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