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DAD - MND diagnosed now. What next?

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    #316
    Hi Positive Vibes,
    Can you write a list of your dads care needs and put a copy on his hospital bedside table and copy to ward staff?

    I think I recall that previously your dad wasn’t a candidate for a RiG or PEG?To have my RIG procedure I had to see respiratory consultant first to have bloods done and assess my breathing.Also same consultant insisted on being at the procedure to monitor my breathing.
    Now your dad has NG tube in is PEG / RIG ruled out.?
    I had an NG tube in for RIG procedure temporarily.
    You must be so frustrated trying to advocate for your dad to get the care he needs.
    Hope he is getting adequate nutrition now and hydration.
    Plus Hope your mom is coping at home.
    Best wishes
    Mary
    • 👍 1

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      #317
      Positive vibes I had an inkling that your dad's swallow would reach a crisis point, just glad he has an NG now after all that palaver.

      As for the comment that the NG would suppress his swallow reflex, erm helloo, the man cannot swallow 🤯🤯

      Hopefully this will make life a wee bit less stressful for you all xx
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user      .
      ​
      • 👍 1

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        #318
        Positive vibes All I can say is that I feel immensely for you, your family and of course your Dad and just offer big HUGS

        Richard
        Richard
        • 👍 1

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          #319
          Positive vibes

          Hope all is well with your dad in hospital

          At least he can get food, fluids and meds.

          Some nurses are not great bedside manner and I speak as an ex nurse.

          The number of times people with no ability to use hands or see, had their food/ fluids put on a table and left
          "Oh they didn't want it"

          NO they can't open it/hold it/see it


          Continue to advocate (you are doing amazing) for your dad



          And hope mum is coping at home.

          Big Hugs

          Donna

          Carer for husband diagnosed MND (Fail Arm) July 2020
          Donna

          Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.
          • 👍 1

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            #320
            Originally posted by Mary C View Post
            Hi Positive Vibes,
            Can you write a list of your dads care needs and put a copy on his hospital bedside table and copy to ward staff?

            I think I recall that previously your dad wasn’t a candidate for a RiG or PEG?To have my RIG procedure I had to see respiratory consultant first to have bloods done and assess my breathing.Also same consultant insisted on being at the procedure to monitor my breathing.
            Now your dad has NG tube in is PEG / RIG ruled out.?
            I had an NG tube in for RIG procedure temporarily.
            You must be so frustrated trying to advocate for your dad to get the care he needs.
            Hope he is getting adequate nutrition now and hydration.
            Plus Hope your mom is coping at home.
            Best wishes
            Mary
            Mary C

            Why the heck didn't I think of this sooner? I was relying on 'pester power'. As in, why haven't I had any dirty clothes for 3 days? Dad needs help dressing and undressing... slap hand across me face...

            Yes - 2 consultants (for Dad's MND) did not reccommend PEG/RIG as an alternative (even though he preferred this, i.e. knocked out and its done)...

            So do I...

            Mum is a bit lost without him...
            Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

            Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

            Comment

              #321
              Originally posted by Ellie View Post
              Positive vibes I had an inkling that your dad's swallow would reach a crisis point, just glad he has an NG now after all that palaver.

              As for the comment that the NG would suppress his swallow reflex, erm helloo, the man cannot swallow 🤯🤯

              Hopefully this will make life a wee bit less stressful for you all xx
              Ellie

              You definitely had 'a feeling in your water' as we say around here.... which was right...

              Yes, I told MND nurse about A&E nurse comments, and she had to restrain herself in her reply through gritted teeth... and even managed not to say anything unladylike...politely asking for the nurse's name, which, by some miracle I recalled...

              Just feeling like the wheels are in motion very slowly... xx
              Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

              Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

              Comment

                #322
                Originally posted by richard View Post
                Positive vibes All I can say is that I feel immensely for you, your family and of course your Dad and just offer big HUGS

                Richard
                richard

                Thank you much appreciated - hugs to you all too...
                Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                Comment

                  #323
                  Originally posted by DeeH View Post
                  Positive vibes

                  Hope all is well with your dad in hospital

                  At least he can get food, fluids and meds.

                  Some nurses are not great bedside manner and I speak as an ex nurse.

                  The number of times people with no ability to use hands or see, had their food/ fluids put on a table and left
                  "Oh they didn't want it"

                  NO they can't open it/hold it/see it


                  Continue to advocate (you are doing amazing) for your dad



                  And hope mum is coping at home.

                  Big Hugs

                  Donna

                  Carer for husband diagnosed MND (Fail Arm) July 2020
                  DeeH

                  Yes, this is what they were saying, his puree in front of him and he 'had bits of it'... so I came back as to whether it's soft/level one consistency? Lactose-free? Risk of aspiration which is why he has the NG in place (insert expletive here), needs help dressing, etc... etc...gah...

                  Now he is moved to LOROS hospice itself and I was allowed to settle him in (with a list of what he wants) and it is like a 5 star luxury hotel by comparision. Poor Dad tersely described the hospital he has left as a dump, where they didn't feed him... (insert string of expletives here) so thank God he isn't in there.

                  Need to get his mucus problem sorted as he is still refusing carbocisteine and nebuliser, so, hopefully the better one on one care will resolve this. He has his own room, and a toilet en-suite, and an R&R chair, and his beloved tv with remote so he is doing a lot better. Restricted visiting only and immediate family... I cannot tell you the relief of actually seeing him and being able to talk to him (still some slurring so hard on the phone sometimes)...

                  I don't feel I am doing a good job, more like fighting the NHS hospital staff apathy, so that now he's in LOROS I know they will actually care...

                  Mum and bro are at least calmer, as he is trying to avoid her, so not ideal for either of them...x

                  Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                  Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                  Comment

                    #324
                    Positive vibes Oh, I cannot tell you just how relieved I am that your dad is in the hospice, not the hospital.... xx
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user                    .
                    ​
                    • 👍 1

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                      #325
                      Positive vibes

                      That's brilliant news.

                      Mum with another condition plus dementia, said she would rather die at home than live in the hospital.

                      Has put wishes in writing (they shouted at her for having hallucinations when sick).

                      I had to get her an advocate as they were not listening to me, her daughter.

                      I know all about fighting, just moved hubs (MND July 2020) and I for the second time in 8 months so he could get a wet room

                      No shower for 5 months!!!

                      You are there for everyone, you are doing a grand job.

                      Take some breaths and try and relax (hard I know)

                      I learned a lot, reading all your updates

                      Big virtual hugs

                      Donna





                      Donna

                      Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.
                      • 👍 1

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                        #326
                        I’m relieved for you too, and smashing that your dad is happy too. Lynne x
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.
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                          #327
                          Positive vibes
                          So glad you dad is in Loros Hospice where I am sure they will ensure his comfort and do their best to sort symptoms.
                          Not running down hospitals but the hospice has a different focus and given the choice for myself it would be the hospice .
                          Lets hope your dad gets his nutrition sorted.
                          Let’s hope that your dad feels very supported and your mom and yourself and your brother feel it’s the right place for your dad right now.
                          Best wishes
                          Mary

                          Keep us informed how the hospice stay goes.
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                            #328
                            Positive vibes you are doing an amazing job and you should be very proud of yourself. I'm very glad your dad is in a comfortable place now but im sorry it was such a struggle for you all.

                            Sending you love and hugs,
                            Debbie x
                            • 👍 1

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                              #329
                              Originally posted by Positive vibes View Post


                              …..I don't feel I am doing a good job…….
                              Don’t underestimate yourself, you have done and are doing an amazing job

                              Richard

                              Richard
                              • 👍 1

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                                #330
                                The only person judging you is you. Stay Strong 🤗🙏💗👍xx
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx
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