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DAD - MND diagnosed now. What next?

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    A long time since last update

    Dad now has a profile bed on order since admitting it took 10 minutes for mum to push him upright!

    Swallow reflex slightly worse, the same texture puree I made on Sunday (as previous weeks) was too dry, so, bro helped make it sloppier with cream..

    Sleeping a lot more now... slept on his chair as it was easier to get out of than the bed, hurry up profile bed!

    So much going on with mo/bro take too long to type. Brother is trying stepping back, and letting Mum run things, so we are going to see how she does... hmmmm

    Finding it very hard not stepping in to do it for her. Maybe she will realise she does need more support. I really hope so and this puts an end to any arguments.
    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


      Positive vibes Thanks for the update.

      The 'experiment' will reset the perception & reality of your dad's care needs, difficult as it is for you to watch from the sidelines....

      Hope that bed arrives and, one thing I bang on about is the importance of having a mattress to suit your dad's needs, for which I hope he was assessed 🤞🤞

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

      Comment


        Positive vibes I do hope this bed hurries up soon. Its a shame we can't preempt things like this to make it much easier and less stressful for all involved.

        Will your Dad be seeing the SLT any time soon regarding his swallowing?

        Your bro sounds a bit like me with my Mum. My brother is much better dealing with my Mum. My Mum tells everyone she can that me and her clash 🤣

        Just remember you are doing an amazing job 🥰

        Comment


          Thanks for the update and I too hope that your dad’s profile bed turns up quickly. Ellie is spot on about assessing his mattress needs. Love 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.

          Comment


            Originally posted by Ellie View Post
            Positive vibes Thanks for the update.

            The 'experiment' will reset the perception & reality of your dad's care needs, difficult as it is for you to watch from the sidelines....

            Hope that bed arrives and, one thing I bang on about is the importance of having a mattress to suit your dad's needs, for which I hope he was assessed 🤞🤞

            Love Ellie 😘
            Ellie

            You are welcome.

            Thank you for that - no-one has mentioned any assessment yet. So I will query this...

            Luv PV 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


              Originally posted by Daught21 View Post
              Positive vibes I do hope this bed hurries up soon. Its a shame we can't preempt things like this to make it much easier and less stressful for all involved.

              Will your Dad be seeing the SLT any time soon regarding his swallowing?

              Your bro sounds a bit like me with my Mum. My brother is much better dealing with my Mum. My Mum tells everyone she can that me and her clash 🤣

              Just remember you are doing an amazing job 🥰
              Daught21

              Me too... we had all tried to get Dad to agree to one, and like his R&R chair, he refused. Now he would struggle to stand without his R&R, and I said his bed would be able to do the same job his chair does...

              Need to contact... still worry he will not have feeding tube or any intervention

              Probably an understatement - at least brother and Dad gel thankfully.

              Cheers for that, still feel I don't do enough, but poorly dog was at vet hospital, and now she's back I don't get much sleep! Little sausage...

              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


                Originally posted by Lynne K View Post
                Thanks for the update and I too hope that your dad’s profile bed turns up quickly. Ellie is spot on about assessing his mattress needs. Love Lynne x
                Lynne K

                You are welcome too!

                Good job you lot are here, because I hadn't heard of this before, and I don't think Dad would question it.

                Luv n hugs PV 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


                  So, bank hols have stuck a spanner in the works.

                  Poor brother really worried because Dad couldn't swallow puree, even made much sloppier, upset him to witness this. Dad is saying to us he will try the feeding tube now (NG), but, when brother asks him direct says he doesn't know if he wants it. That's Dad's polite way of saying no. Bro keeps saying its his choice (which is right), but, I don't want him to just focus on refusing only.... I keep saying give it a try and if you don't get on with it, or don't like it, at least you have tried. But in the hopes he does stick with it.

                  Even liquid meds sets off coughing fits which last a long time. Trying to get him to use thickener, made up a batch in plain water, he isn't keen but actually drank with meds and it stopped the wracking coughs. Told him I'd make another batch and got the response 'Don't bother' but did it anyway. And then added his liquid meds again - this works and stops coughing fit. I think half the problem was he didn't want to faff around with it, and can't do it himself, but it is the job of less than a minute to whisk up the powder with a little water, (like mixing cornflour), then add in the rest of the water, whisking it up quickly. I did 600ml & he did use this morning because it was right there in front of him and it works.

                  I said - its annoying isn't it, when the nurses are right!? To which he agreed - lol...

                  Trouble is, spoke to nurse and she is saying that we are in the risk zone for his pureed food now. Too thin and he could aspirate. Too thick and he can't swallow. Yet we still have to get nutrition in him. Tried soup last night (brother added some of the water with thickener in it) and that seems to be that very fine balance between thick and thin. Plus extra pureed strawberries n cream... I think we are on the cusp of him not being able to eat.

                  He says the supplement drinks are ok, about right consistency (slightly thicker than milk, but, thinner than milkshake if that helps anyone). However, I do notice he coughs when drinking so not totally convinced he is right.

                  So, tried contacting HENS and of course very short staffed because of BH, so Dad is now on this (almost) liquid diet until they come back. Nurse has already done urgent request for NG feeding tube, so we are a bit on edge that we could have an aspiration episode.

                  Not going to mention all the usual drama which is still on-going. Need a lie down in a dark room...

                  Didn't get to speak to physio, although she has ordered bed and no assessment of Dad (or type of bed) so we are crossing all digits and hoping it is ok... had to find out myself when it's coming by phoning delivery company (they delayed last time because of funding) so praying they come the day they say they are. I am allowed to phone in a one hour slot the night before delivery to be told when it is coming (a vague time slot not exact time it will come) which isn't totally helpful when trying to arrange sibling being there to move stuff (he is taking time off work).

                  What jolly fun this illness is, keeping us on our toes, trying to get one step ahead of it, but feeling more like we are dragging well behind in the race, like the stragglers at the end of the marathon who turn up when everyone else has gone home....
                  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


                    Hi positivevibes
                    This sounds an awful situation.Your dad needs nutrition yet has no satisfactory way of getting it.Presume not a candidate for a PEG /RIG to be fitted?
                    Can NG tube be fitted at home ?At least he has supplement drinks for now.Cant the hospice or palliative care team come up with some way of your dad getting a good nutritional intake with some urgency?
                    Really Hope you get the issue sorted soon.
                    Best wishes
                    Mary

                    Comment


                      Positive vibes It's a universal truth that these things always rear their ugly heads on a BH weekend....

                      *IF* tyour dad's swallow reaches a crisis point this weekend and he wants help which LOROS cannot provide, A & E might be an option for an NG tube, either directly or as a gateway. A hospital stay is the last thing anyone wants to put your dad through though. xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        Positive vibes...I agree with Mary C as my hospice team told me I can contact them 24/7 as they offer round the clock support...is it worth talking to them about this. Hope you find the right help🙏
                        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                        Comment


                          Originally posted by Mary C View Post
                          Hi positivevibes
                          This sounds an awful situation.Your dad needs nutrition yet has no satisfactory way of getting it.Presume not a candidate for a PEG /RIG to be fitted?
                          Can NG tube be fitted at home ?At least he has supplement drinks for now.Cant the hospice or palliative care team come up with some way of your dad getting a good nutritional intake with some urgency?
                          Really Hope you get the issue sorted soon.
                          Best wishes
                          Mary
                          Mary C

                          Thankfully it seems to have been a 'blip' in that he managed extra sloppy puree yesterday thank God.

                          Not eligible for PEG/RIG as consultant's feel he is too underweight/frail/age factor, only NG which he hasn't been keen on up to now.

                          Nurse said as long as he hydrates e.g. thickened fluids including water he should be ok, but, there's a slight improvement on that - felt a bit worried but not as stressed now.

                          We are still hopeful but do feel an NG needs to be done ASAP. The great news is that it usually isn't a sudden throat collapse, it is gradual.
                          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


                            Originally posted by Ellie View Post
                            Positive vibes It's a universal truth that these things always rear their ugly heads on a BH weekend....

                            *IF* tyour dad's swallow reaches a crisis point this weekend and he wants help which LOROS cannot provide, A & E might be an option for an NG tube, either directly or as a gateway. A hospital stay is the last thing anyone wants to put your dad through though. xx
                            Ellie

                            Thank you, we are a lot more cheerful he is getting nutrition in, so that would have to be a last resort... xxx
                            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


                              Originally posted by LindaB View Post
                              Positive vibes...I agree with Mary C as my hospice team told me I can contact them 24/7 as they offer round the clock support...is it worth talking to them about this. Hope you find the right help🙏
                              LindaB

                              I think a phone call to reassure us all would still help, but, at least we are just about squeaking in something. It is now more a soup with thickener by the looks of it...xxx
                              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


                                Well that went pear-shaped very quickly...

                                Dad again couldn't swallow (BH Monday breakfast). Also fell as right leg gave way and couldn't stand. Chaos as follows:

                                Late morning. Rang LOROS ward - they said ring 111...

                                Ring 111... busy so half hour wait on phone... then discussed symptoms he had... clinician to ring back...

                                1pm clinician says ring ambulance! Panic... ring ambulance... and ring ambulance... etc. told by 111 not to give him anything (no meds, fluid, puree)

                                5pm ambulance arrives... no walking aids as crew suggest these can easily go missing... grab his meds and bare minimum clothes/toiletries...and his phone, charger and paper he hasn't read...

                                5.15-7pm at hospital, in ambulance for nearly 2 hours... again, no hydration, allowed a sterile swab to moisten Dad's lips with sterile water... allowed to administer atropine under his tongue. Thank God I grabbed paper and pen, kept Dad calm and relaxed doing his crossword...

                                7pm finally in A&E busier than a motorway on a sunny weekend... and waiting... and waiting had to try Dad on commode with nurse assistant. He wanted to walk to toilet but as he had fallen and no blasted aids nurse brought commode instead. Had to get nurse help to move Dad when he tried to get comfortable on the trolley/stretcher...

                                9.30pm finally assessed by 'Nurse Ratchett'. Gave Dad his atropine (as he can't self-administer) because cough coming back. Still no fluids, other meds, nutrition... Nurse Ratchett puts in IV at long last feel relieved he is getting something... have a slightly heated debate as she said putting in an NG 'stops his swallow reflex so they are going to put in PEG/RIG'. Explain that Dad hasn't eaten/drunk since struggle with breakfast, or medicated apart from atropine.

                                10.30pm told that I can't go into AMU ward which he is finally going into. I have spoken to every passing staff member plus Nurse Ratchett about his meds, his need for sloppy puree (if he can attempt it but needs overseeing as risk of aspiration), his lack of motor skills and weakness in legs.

                                10.45pm stagger out of hospital can't find any taxi available (BH remember) stagger across to bus stop and bus takes me home... I hadn't driven as accompanied Dad in ambulance. Thank you carer's passport...

                                Find out next day moved to AFU, and still no feed tube. Manage to blag my way to ward to bring clothes & more toiletries and get update. I then find that no-one has 'put the atropine in Dad's eyes' arghhhhhhh.... have long discussion with nurse about administering this and why, then doc came over, (this is in ward doorway not allowed in) who look dubious and then finally agree, and then nurse says she will leave small plastic vial/bottle next to Dad to do himself. What part of not being able to do this did they not hear.... argh again. Explain again.

                                Been every day to ensure (pester) that this is being done, leaving a paper for him to do crossword (already taken 3 pens in with first lot of clothes)... Ng tube in! Fantastic... he has finally agreed so meds and food can go in at last, poor old Dad....
                                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

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