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    #31
    Wow- what overwhelming responses Thank you all so much

    I went up to the hospital last night and said to Gran that, when she's back in the nursing home and settled, I will be taking a few days off because I am exhausted. I told her that I wouldn't be saying this to her unless I was desperate and I think she took it on board (I think she was more willing because I told her I'd let her sister know what I'd be doing and try to get her to 'replace' me for those days). Whether she actually does or not, I don't know.
    I know you're all right- I need to just grow a pair and not leave it up for discussion with her.
    Gillette- I bring my fiance with me one day over the weekend, usually (unfortunately, he finishes work much later than I do during the week and can't make it up to the home with me to visit then). It definitely puts a different spin on things when he's there with me- she doesn't say anything upsetting when he's around, that's for sure.

    She's meant to be coming out of hospital today so we'll see what happens.

    Thanks guys- so, so much xx
    "This, too, shall pass"

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      #32
      Hi there

      [QUOTE=Broostine93;91771I know you're all right- I need to just grow a pair and not leave it up for discussion with her[/QUOTE]

      Oooh err - I know there was a smiley there, but I am amazed what you have been doing and feel for you in that you are having some difficulty getting your relatives to pitch in.

      I have just had speak to my relatives about the care of my mother, who is 91 and aggressively independent, and in fact what we have done is put together WhatsApp group so that we can keep touch with who is doing what, when and to whom.

      Warmly
      Warmly


      Andy

      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

      "Things turn out the best for people who make the best of the way things turn out"

      Comment


        #33
        Hi Nunhead_man,

        It's a great idea and my other side of the family have the exact same WhatsApp setup for my Nan and Grandad on that side (beginnings of dementia for Nan and Grandad has incurable bowel cancer so that side of the family all pitch in together).

        It's only my Gran's sister and Gran's son that I'd be able to add into a group chat (Gran's brother doesn't know how to use WhatsApp) and, to be honest, the son visits so irregularly/infrequently that I don't think a rota would be of much use (he lives over an hour away and works irregular hours during the week). Gran's sister relies upon her brother bringing her to the nursing home as she doesn't drive.
        It's all very complicated!

        One thing's for sure- once this terrible disease has finished destroying everything and the dust has settled, I'll not be doing anything for anyone else for a really long time afterwards (which sounds awful, but I think you all get where I'm coming from) xx
        "This, too, shall pass"

        Comment


          #34
          Hi Chrissie,

          I hope your Gran is feeling more comfortable today and she is no longer in pain.

          Love,
          Kayleigh x

          Comment


            #35
            chest infections can cause a lot of pain. Tony has been eating and drinking things he should'nt have and ended up in A&E this week with aspirational pneumonia. He was getting a lot of pain in his chest on breathing. I disagree about MND being relatively painless. This is because the fact that someone's muscles etc are seizing up causes pain, which wouldnt have happened without the MND. My husband is on a pain patch, oramorph, amitriptyline and other pain meds. If you move any of his limbs he finds it very painful. Everyone is different though and other MND sufferers won't get this. But I wish I had known it was a possibility as I could have prepared myself.

            Comment


              #36
              Hi Devonmaid;

              Sorry to hear of Tony's chest infection and hope that is under control now so his more comfortable.

              Most of us experience bad pains at times, muscles, joints, teeth, wind, constipation, broken bones, well the list goes on and on and it's all mostly due to have Mnd.

              Love 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.

              Comment


                #37
                Hi Devonmaid,

                I hope Tony is more comfortable today. I agree with you that we often experience pain and Terry sums it up well. I think the information on the MNDA website is misleading.

                Barry
                I’m going to do this even if it kills me!

                Comment


                  #38
                  Originally posted by Devonmaid View Post
                  Tony has been eating and drinking things he should'nt have and ended up in A&E this week with aspirational pneumonia.
                  Hi Devonmaid,

                  Sorry to hear Tony has aspiration pneumonia - would he consider getting a feeding tube or has one been mentioned because of the aspiration?

                  Hope he recovers quickly from the pneumonia.

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

                  Comment


                    #39
                    Hi All,

                    Gran's chest infection cleared up in 2 days and she's now back in the nursing home. She was rather fuming on her discharge day, as they'd told her she was leaving in the morning- they didn't get the transport for her until 7:30pm (I did try to tell her that the ambulances were most likely tending to emergency situations- seemed to make her feel better about it). When she got back to the home, they tried to transfer her from wheelchair to her bed using the rotunda and her legs gave way. They couldn't lift her so had to get her into the hoist. We thought that this would be the start of hoisting (and continued use of those horrid adult nappies), but she's now able to use the rotunda again (think the prolonged stays in bed, without the hospital staff knowing how to use the rotunda properly for Gran's needs and so they just stuck her in the nappies made her legs 'forget' how to stand for a short while). Glad things are 'back to normal' for now.
                    Devonmaid- so sorry to hear Tony has pneumonia I hope he has a speedy recovery!
                    Ellie- I read up about feeding tubes and aspiration-related chest infections/pneumonia and it said that PEG doesn't decrease the risk- in fact, it increases it! I was shocked to read it, as all of the professionals involved with the palliative care seem to indicate that it eradicates the risk altogether- very surprising indeed!
                    xx
                    "This, too, shall pass"

                    Comment


                      #40
                      Hi Chrissie, Great that your Gran's chest infection has cleared and that she's is now out of hospital. I hope that everything works better now with the care home. I don't know about the rotunda you. mention or PEGs. 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.

                      Comment


                        #41
                        Hi Christine,

                        It doesn't take us long to forget how to use legs, because even after nine years I think that they move like a normal person's does, automatic reset.

                        Can't see how feeding tubes increase the risk of any thing going into the lungs. Sometimes I don't clear the mouth completely before I put more food in and that causes problems. Getting tired when eating can also cause problems.

                        You don't have to use a feeding tube all or any of the time. But handy for the occasions when you do.

                        Love 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.

                        Comment


                          #42
                          Thanks, Lynne

                          Terry- absolutely agree. It must feel so strange!

                          The quote from one of the articles I read is below:

                          "About a quarter of patients will have a complication, such as tube occlusion, wound infection, pain, aspiration pneumonitis, and peritonitis, after the PEG tube is placed.16 Aspiration occurs frequently after PEG tube placement and can occur in up to half of older patients with feeding tubes regardless of whether nasogastric or gastric tubes are used."

                          Source: https://www.the-hospitalist.org/hosp...be-or-not-tube

                          Might be useful for someone to read when trying to make their mind up as to whether to have the PEG or not.

                          Personally, I like the idea of the PEG- I think it's brilliant for providing nutrition when one doesn't enjoy or want to eat food anymore and I think the idea of being able to administer medicine through it would be invaluable during the 'late stages'. I don't think Gran agrees (and, understandably doesn't want to think that far ahead to see the practical advantages of it). It's her choice and I can see where she's coming from with regard to 'not wanting to linger' as she puts it. I do very much worry about what's to come when food can no longer be swallowed, though.
                          "This, too, shall pass"

                          Comment


                            #43
                            Hi all

                            Pain and whether it is a symptom of MND or not is something that gets discussed a lot both at the MND Association and in the wider world.

                            The dying of the motor neurones themselves isn't painful. The effect that these dying motor neurones have on the body can be painful. So cramps, chest infection, immobility, etc can all be very painful. Pain is usually felt through the sensory nerves which are not believed to be affected by MND and so experts say that MND does not cause pain. The symptoms of MND do cause pain.

                            I think it's as very fine line and it's something that is often discussed at the MND Association.

                            Best Wishes

                            Rachel
                            MND Connect Adviser
                            MND Connect
                            Contact us on 0808 802 6262 or at [email protected]

                            Comment


                              #44
                              Hi all....me again!

                              Regarding PEGs, they can help to prevent aspiration as they enable people to receive nutrition without the danger of trying to swallow and so aspirate. Swallowing is a very complex process and with MND, some of the important steps can be ineffective and so food and drink travels to the lung and can cause a nasty infection or aspiration pneumonia.

                              There is a risk of aspiration with a PEG tube which is one of the reasons why someone should never lay flat whilst the PEG is used.

                              Best Wishes

                              Rachel
                              MND Connect Adviser
                              MND Connect
                              Contact us on 0808 802 6262 or at [email protected]

                              Comment


                                #45
                                Thanks Rachel from MNDA. Do all MND sufferers eventually benefit from a PEG and when's the best time to have it done? I'm not too bad swallowing. In the last 6 months a bit of difficulty half a dozen times, but nothing serious and no chest infections. Thanks. 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.

                                Comment

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