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Potential End-Of-Life Content- Sensitive Question

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    Potential End-Of-Life Content- Sensitive Question

    Hi All,

    My Gran's progression with MND has taken a new turn and, for the first time, I don't know what to 'expect' next.
    I spoke to the palliative team last week and they've told me that she's left it too late to decide if she wants a PEG. I don't think she ever really did want it, but she sounded shocked when I had to break the news to her, saying 'but I didn't need it back then' (I had repeatedly told her, from almost day 1 of being diagnosed, that it needed to be inserted before she needed to use it and whilst her body could withstand the operation- I think she's a bit in denial about it, but I digress).
    Thing is, she's now having trouble even eating pureed food. She had fairly lumpy soup yesterday, served by the nursing home staff (despite the palliative team telling the nursing home last week that she needs to have thin soup because the thicker consistencies are actually harder for her to swallow), and she had an epic coughing episode that lasted about 10 minutes because the lumps got stuck.
    This obviously means her weight is plummeting now. She has had a chest infection, but the antibiotics were prescribed early enough to catch it before it developed into pneumonia.
    This is the part where I ask the horrible question:
    With her being unable to physically eat most of her food, what is going to happen? Is she going to slowly starve to death? Is the malnourishment going to trigger a heart attack? Is there any other way that the nurses can get some nourishment into her?
    To be honest, she keeps telling me she's fed up of living. She hates being bedbound all day, every day (with the exception of being hoisted out for showers/toileting/getting changed).
    I know there's no way of knowing a specific time-frame with this horrible disease, but I know many of you are experienced enough to know when something sounds like it's heading towards the end. By my reckoning, this feels like it's going to come to an end this side of Christmas- would any of you be inclined to agree/disagree with that assessment? It's something you can never be truly prepared for, but it's something I want to try and 'get ready for the big blow' if it's on it's way, kind of thing.
    So sorry if any of this that I've written has caused anyone to feel uncomfortable or upset (not my intent at all) - I just really don't know who else to ask any of these questions to.
    "This, too, shall pass"


    Sorry to hear that the mnd is advanced so quickly. Have you thought about getting a nose tube in. This can also be used for feeding and for giving mediction. I'm sorry that I can't advice on her feelings of living been a waste of time but hopefully other more experienced members will have some ideas on that. Best of luck and take care of yourself it sounds like you are under an awful lot of emotional pressure at the moment.



      Hi Broostine,

      I'm sorry that things have moved on so fast.

      Have you thought about asking the palliative care team about what to expect and what can be done to alleviate/control any symptoms your gran has or might have? I think they should be able to answer any questions you have.

      Best wishes and big hugs to you. As Mickmac says, make sure you take care of yourself.

      Trying to keep positive, but not always managing.


        Hi Chrissie,

        I'm sorry you have to face these difficulties regarding your Gran's health.

        Yes, the Palliative Care Team should have explained what will happen now that a PEG (or RIG?) procedure is no longer possible .

        If it comes to the stage when your Gran is physically unable to eat and drink, she'll be given meds which allieviate any hunger pains and will keep her comfortable, bearing in mind her body will have gradually weakened over time.

        As Mick said, it may be possible to feed her through an NG feeding tube, but is this what your Gran would want? It's very difficult for you as she's giving some mixed messages to you, making it even harder for you to know what she really wants, particularly if you have Power of Attorney over her medical affairs...

        If she can give you or the Palliative Nurses an idea of her wishes, at least you'd know her options.

        As for the 'how long' question; that's very difficult to quantify - some people hold on for longer than anyone imagined, others don't.
        Talk to her team.

        In the meantime, make sure she's sat upright when eating or drinking; thin soups should be thickened with commercial thickeners; she should eat slowly, without distraction & tuck her chin into her chest for a safer swallow. If staff continue to ignore her dietary requirements () stick a clear sign over her bed with the appropriate instructions.

        Sending you a big hug, Chrissie.

        Look after yourself,

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


          Hi Guys,

          Thanks for your replies. Certainly given me a lot to think about!

          I don't have POA, unfortunately. I bought the forms months ago, not long after diagnosis- she didn't want to fill them out with me because she felt overwhelmed (and I don't think she realised how necessary they were later down the line. Especially the financial one, as we ended up writing to the bank to give me third party mandate instead and now I've had the bank suspend the account whilst they investigate 'suspected fraudulent activity'. All I've been doing, at Gran's wishes, is taking out so much every other week and moving it to a savings account, in my name, to pay for her funeral, when the time comes. I explained all this to the bank on Friday- just another thing to worry about when all I've been doing is trying to help, unfortunately).
          I will definitely need to talk to the palliative team about the food issue- thank you for the advice on this. I don't think Gran will go with the nose-tube idea- she's uncomfortable enough as it is, so I think that would push her over the edge.
          It's so strange, Ellie- if she has thickener added to anything, she can't swallow it. She seems to only cope with thin soups and liquids- I've never heard of it being that way round before and I think it's stumped the SLT.
          Unfortunately, I've tried sticking signs over the bed to sort out other issues (pillow placement and feet placement when in bed)- they get completely ignored.
          I know it's going to result in my having to complain to the manager and I am terrified about doing it- confrontation and complaining is not my thing at all, but it's getting bad now.
          There is one more thing playing on my mind (sorry for full-on ranting, as usual!) I had a break from work for 2 weeks (much-needed), which ended just over a week ago. During that time, I realised I can't go on visiting every day (it was really breaking me to have zero life outside of work and Gran) so I said I'd not be coming up on Mondays and Fridays (just to keep my head straight and have some time to myself) after work. I put this in place as of last Monday.
          I told Gran last night that today was my 'off' day and she looked panicky and asked if I could ask her sister to come up 'in the evening, like you normally do'. So I did. The sister rang me and said 'I know she only wants me there to get her comfortable after the carers have put her to bed for the night and it means I'm there too long- I'm exhausted after a day of looking after my grandson and I have to get the bus there and back, plus a walk when I get off the bus back to my house. It's okay for you, you've got a car'. To be honest, I was flabberghasted at the outburst, where she preceded to tell me she feels guilty if she doesn't stay for the time Gran wants. I tried to tell her that's how I've been feeling for over a year and she just waved it off. Now, I'd like to stress that I never asked for anyone to take my place for the two days I'm off- that was Gran's request *and not a totally unreasonable one for 2 evenings out of the week, whereas I've been doing 7 evenings per week for 3 months, plus whole evenings during the week and full days each day of the weekend before she moved to the nursing home for nearly a year*. Am I right to think that the sister's behaviour and outburst is completely unreasonable, given the circumstances? I must point out that the sister is a young 68 (i.e. very active etc.) and doesn't work.
          Again, sorry for the full-on rant!
          "This, too, shall pass"


            Her sister's reluctance to be there for you and your Gran is something you can't change, Chrissie - it is what it is.

            The main thing is that you do what you have to do and take your evenings off. I know it seems harsh to say, but the carers, whose job is to get your Gran comfy, are being let off lightly - they're never going to learn if they don't have to.

            Would writing to the Manager be easier for you? You'd have the added bonus of having your concerns raised in writing, which is always a good thing. If the Palliative Team are external, maybe they'd help you?

            Big hug to you. And I'm glad you got a break from work, pity you didn't get even a couple of days away.

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


              Hi Ellie,

              No- definitely got to stick to the mantra of 'accept the things you can't change' where she's concerned.

              I think I have the courage within me to talk to the manager in person. The palliative team were informed of my concerns last week and, though they tried to help with some things, the other things either weren't confirmed to the manager or Gran asked them not to complain about it (she's got one particular carer she feels is quite bully-ish, but she's worried that she'll treat her worse if she knows she's complained. I told her that is mal-practise and she would get sacked for such a thing, but she's not convinced).
              I've decided that, after the inevitable happens, I'm taking loads of trips away (abroad/UK/wherever) over the course of the following year- if anything, it'll help the grief process.
              Thanks, Ellie *hug*
              "This, too, shall pass"