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    Originally posted by Ellie View Post
    Positive vibes Great news re earlier appt with Dietitian.

    You may need to banish all cakes from the house πŸ˜ͺ even with a custard-type topping, those pesky crumbs have a way of escaping and causing trouble, which I know from personal experience...

    I eat those chilled individual desserts, mousse and smooth puddings, which are really easy for me to swallow. You know the desserts? Aero, Rolo, Cadbury's Pots of Joy etc. xx
    Ellie Thanks Ellie. You have many top tips. Ummmm..... chocolate.... Adding these to the ever-growing list....
    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


      Lynne K

      Hello Lynne!

      It helps that I don't have much of a life.... Ha!

      I tried muzzling the pesky pooch. The devilish dog 'used' the muzzle as a scoop for a particularly horrible grab at a cow pat and spent the rest of walkies licking the muzzle as she walked, much as one might savour an ice cream cone whilst walking.... bleurgh, gag, holding muzzle under tap trying to get rid of manure at arms length... gag.... fail.

      I do love my dog. I do. Honest. Filthy beast though she can be at times....

      Maybe next time I will get a cat.....​​​​​​​
      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. Dad feels that the carbocisteine made things worse, and felt he couldn't swallow, and that is why the cake and his dinner were difficult to eat. Not because of the MND, or crumbs. Hmmm. He is now not taking it (only took one capsule yesterday). He admitted sleeping better but said this was the nebuliser, not the new meds, despite using the nebuliser for a week and complaining that mucus woke him up. Double hmmm.

        Helped Mum cook dinner, and then pureed Dad's - meat, potatoes, cheese in one pile. Broccoli, sprouts and carrots in another. Gravy on top. Refused to give him a glass of water, and offered milk instead (he didn't want juice). Success! No coughing. He enjoyed it and said how much easier it was for him to swallow. The milk, amazingly enough, made a huge difference. Instead of hearing him sip, cough, cough, cough, cough, cough, cough, eat a bit, sip, cough - you get the picture. He only cleared his throat once. Hopefully he will willingly transition to pureed food now.

        We are going to check his weight tomorrow, and with almost a week of milky, cheesy mash this will have made a difference. Then we have the dietician appointment to do. Plus help him with his filter (goldfish)..

        A bit sad. He said he was worried about falling when dog walking. I suggested asking for a really light weight aluminium walking stick (the type with 'feet' that can stand up on its own), so he can use it with his stronger hand, lean on it to pick poop, just to give him confidence. Or some type of extending poop picker... and the answer, you guessed it, nope.

        I am thinking that he automatically says no to us, but, if a professional, i.e. OT or nurse, suggests it, with how it will benefit him to be independent, he may agree sooner. Or maybe it is older age making it difficult for him to think of change/adaptations. Like how people resist a mobility scooter or any suggestion of them getting older and needing support/devices....
        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


          Since I doubled my carbocisteine dose to 20mil I have no every day problems with plegm anymore. πŸ‘πŸ€—πŸ˜πŸ˜€xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

          Comment


            Originally posted by matthew55 View Post
            Since I doubled my carbocisteine dose to 20mil I have no every day problems with plegm anymore. πŸ‘πŸ€—πŸ˜πŸ˜€xx
            I am going to have words with GP to try liquid carbocisteine for him. And get him to try again. He read the side effects - which described allergy symptoms, and he doesn't have any of them. Just zoomed in on the phrase 'trouble swallowing' so stopped it after one capsule. And said the only reason he slept better was the nebuliser (which for the previous week he complained hadn't stopped his mucus problem and his night waking!)
            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


              Dietician update:

              Dad lost more weight. Now a whole stone...

              Explained all his background, symptoms, start of swallow problems, how blending his meal on Sunday was a huge improvement. And drinking milk, not water, helped.

              Solutions:

              1. Try larger portions (he was having 3 small boiled new potatoes, steamed veg, a couple of thin slices of meat)

              2. Slather portions with margarine (can't digest butter), lacto-free milk and cheese. Which we did and he is now off cheese....

              3. Add lacto-free cream/custard to any dessert e.g. apple pies, strawberries. Bought loads - cream, little pots of mousse, desserts (vegan)!

              4. Try Complan again. Dietician firmly told him that there is very little lactose in dried Complan, so he grudgingly admitted his constipation was possibly a coincidence. Result! She is sending a whole range of supplementary sachets of different flavours and ringing back in a week to get his favourite ones prescribed via GP for free. Yay! He is supposed to drink 2 a day.

              5. She is getting him to try a soft bread roll with eggs i.e. egg sarny, or cheese at night - not just a tiny apple pie.

              6. Lacto-free milk or milkshakes instead of water or juice. More samples of these.

              7. Minced meat meals - no more joints as we are having to mush these to dust anyway. Flaked fish (fish pie with mash on top), Shepherd's pie, cottage pie, are the order of the day.

              8. He finally admitted loss of appetite, due to mucus/swallow problems. Stress on giving him food he enjoys.

              9. He 'forgot' he snacked on chocolate, so, in my added observations/any more questions moment, I 'reminded' him. Dietician said no problem if he copes ok with it.

              10. Oddly, he craved nuts and raisins, and never eats that, so we bought that too for him to try. Don't really think he will cope, but, wanting to tempt his appetite. Dietician says yes, as long as he can eat it safely....

              So. Basically everything we already said to him, but, he was reluctant, or made excuses e.g. Complan. I think the big problem is struggling to adapt to change at his age, struggling with appetite, and struggling with swallowing, so not wanting to admit it to himself. I think I need to be there a lot more. Poor Mum tried blending his food at lunch and blended it all over the kitchen floor.

              Going round now to tempt him with rice pudding made with lacto free milk. Wish me luck....

              P.S. He admitted to Dietician, not to us, that his right arm is practically useless now....
              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 Ah yes, the power a stranger can exert over a person (your dad) is much more potent than that of a loved one (you).

                The age old issue that you can tell your dad something 100x, only for it to fall on deaf ears, in walks the Dietitian who gives the same advice and suddenly it's a good idea πŸ˜πŸ˜„

                Hopefully he will start putting some weight back on, and quickly.

                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


                  Originally posted by Lynne K View Post
                  Have you thought of putting a muzzle on him or her so that nothing can be eaten from the floor whilst outside?
                  And a cork at the other end πŸ˜‚πŸ˜‚πŸ˜‚
                  Richard
                  Richard

                  Comment


                    πŸ˜‚
                    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 Ah yes, the power a stranger can exert over a person (your dad) is much more potent than that of a loved one (you).

                      The age old issue that you can tell your dad something 100x, only for it to fall on deaf ears, in walks the Dietitian who gives the same advice and suddenly it's a good idea πŸ˜πŸ˜„

                      Hopefully he will start putting some weight back on, and quickly.

                      Love Ellie.
                      Ellie

                      Too blinking true...

                      Like he has heard it for the first time from the dietician.... Still, whatever motivates him can only be a good thing and she is checking up on him next week.

                      Got a text to pick up prescription and it turned out to be the first sample - 2 x 200ml strawberry non-dairy supplement drink, 6 x 5ml spoons three times a day. Still having his wits about him he has translated this into two dessert spoons 3 times a day. Which was great until he tried to take it himself standing over the sink but his left hand tremored too much so half went down the plughole. We will be administering these for 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


                        Originally posted by richard View Post

                        And a cork at the other end πŸ˜‚πŸ˜‚πŸ˜‚
                        Richard
                        You mean for the dog or Dad?

                        Just kidding....

                        The stupendous squirting hound is back to 'normal' whatever that means, and who knows for how long?
                        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 I do hope you have someone looking after you too! You have taken on so much, please look after yourself and get parent-free 'me time' - I mean that kindly.

                          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


                            In other news, been trying not to worry because the nursie rang and has booked an appointment for Dad to see MND Doctor, however, she mentioned the dreaded phrase 'pallative care'. I have simply told Dad that he is an MND doctor based at LOROS because I don't want him to feel any more down than he has been with all these problems he keeps having with lack of sleep, and mucosal build-up waking him every night.

                            He is arguing against carbocisteine now, even in liquid form, as he says it makes it worse. Whereas nursie wants him to persist with it, as the mucus was too sticky and he couldn't cough it out before. He says it isn't normal. But, I have said that it seems to be 'normal' if you have MND....

                            Anyway, he is happier at the moment that he isn't to have it in capsule form, as the shell of it was melting before he could swallow it, which was very unpleasant for him... and it will take several days to get the liquid form ordered in at the chemist. So he isn't taking any of it for now.

                            I feel a disagreement brewing, like when he said it was the complan making him constipated, when the reality is it could be the extra cheese, or the chocolate snacks he conveniently forgot to tell the dietician about!

                            Got him to agree to take the complan if I fixed something on his pond for him. And he is being as good as his word on that, thankfully.... small win.

                            I guess I feel I am fighting to keep him going, whilst he is less enthusiastic about it, describing his condition to the dietician as 'death by a thousand cuts'... we talked a little yesterday about it. He said he would far rather go quickly, like a sudden heart attack, so it was over and done with, than this, where he feels he is slowly withering away and very frustrated about it.

                            Never thought we would discuss things like this. He has always been reserved about emotions, now he tells us he is welling up often over small things, films on t.v., little things my brother and I do for him. Even saying we love him can set him off.... I realise I am staring at the harsh reality that he may not have the fight in him to keep this at bay for as long as we had hoped....

                            Okay. Enough of that.... need to keep cheerful for his and Mum's sake.

                            Positives for today.

                            Dad ate twice as much today as he has for weeks.

                            Carpet is fitted on stairs, in bedroom and on landing. Hoovered all the bits as the contents coming Thursday. Bathroom tiles can wait as there isn't much needing to go back in there.

                            Ready for their stuff coming back and not needing to try and calm Mum about what has been cleaned/repaired, what is or isn't coming back, because we will finally know for sure.

                            OT bringing toilet frame tomorrow and assessing any other needs/equipment. I will have my notebook and plenty of questions.

                            Mum will have ECG so we will finally get answers tomorrow if there is anything vascular to worry about. Hoping not and keeping fingers and toes crossed. Which is a bit difficult when walking the dastardly dog.

                            Another step forward towards getting their home back. I am looking forward to the day when I don't have to bend the ear of trades/insurer's/decorators/carpet fitters with e-mails and phone calls flying back and forth.

                            Then we can breathe a huge sigh of relief. Focus on making the parents as happy and contented as possible.

                            Dad has finally been persuaded to have a few hours outing, so, will talk to OT about possible walking aids (chairs?) tomorrow....

                            Phew....
                            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 I do hope you have someone looking after you too! You have taken on so much, please look after yourself and get parent-free 'me time' - I mean that kindly.
                              Love Ellie.
                              @Ellie

                              Aw, you are such a lovely person, thank you.

                              There is just me, unless you consider the dog is 'looking after me' by poking me awake, scratching me for her dinner, or walkies. Saves having an alarm clock I guess, she has an in-built timer! Ha!

                              I try not to be there 24/7, whilst Dad is still able to shuffle about, because I do want him to feel he still has some normal routine & quiet. But I am there more often now. My 'breaks' are really to go home and check the dog is ok, get something to eat as parents aren't vegan and I think they have enough to do without catering for me. So, I set up their lunch, blend Dad's, then nip home to eat, feed mutt and have some down time/walkies, catch up on cleaning. Then, back for any appointments, pick up prescriptions, shopping, update notes, check what's next on the list (Mum's, Dad's, repairs), talk to them what they want as priorities. Often we get phone calls (either to me or Dad) so we are ringing each other several times daily to update calendars, etc.

                              Sometimes this translates to 'Get home, feed and walk dog on auto-pilot, crash on sofa, reluctantly drag myself to kitchen, slap peanut butter on oatcakes with vegan cocoa, zombify in front of tv.' This is when the dog decides 3am is an appropriate wake-up time. Bless her little cotton socks.


                              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


                                That tearfulness is yet another joyful part of MND, called Emotional Lability or Pseudobulbar Affect, and can manifest as laughter too, often at the most inappropriate of times.

                                Think of it as exaggerated emotions rather than a true reflection of one's mood, and a tearful episode will often turn into laughter. My family are used to this now but when it first started, it was off putting.

                                Re swallowing tabs: if he has to take capsules, pop one in a spoonful of mousse/dessert/jam, makes it easier to swallow. xx
                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                                ​

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