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DAD - MND diagnosed now. What next?

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    Been to parents, and, Dad isn't feeling good. 'Upset tum', he keeps getting constipated, doesn't take nurse advice to take a laxative daily, then, takes two doses, now been backward and forward to loo 5 times! Tiring him out poor thing... I keep repeating what nurse or doc's say, but, it makes me feel like the 'health police'. He refused additional supplements today - not even his 30ml x 3 calpogen (like mini strawberry supplement, attractively called 'emulsion'). Wouldn't let me assist. Except paperwork. Poor old mum struggling to cook for him, kept asking me how to use the microwave, but, won't acknowledge she's got used to brother cooking lovely meals for them, and won't let me help her either. Where is head in hands emoji?

    He said his right (dominant) leg is weakening more, but, at least he enjoyed his day out at LOROS yesterday.

    I worry that Dad is also down and missing brother... he said again he had no appetite, and mum was taking a long time to cook for him... assist her either. She didn't make herself anything, it was like she could only focus on one thing, making a meal for dad... that horrible disease is taking its toll...

    Sadly no sign of brother returning, as yet, although a lot of his things are still at parents. Really, really hoping he is having respite and taking good care of himself. Perhaps mum and bro will appreciate each other more when (if?) he comes back...
    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
      Glad your Dad is still maintaining his weight and is able to be a bit more mobile 💕

      It is my mission to get my Dad to put more weight on. Now he has the correct size clothing (courtesy of my brother) his weight is really noticeable.

      There is so many things I haven't even thought of but will make the world of difference I'm sure.

      Hope your doing okay. You're doing a brilliant job xx
      Daught21

      This is crucial, I think, to maintaining energy levels & more optimistic outlook. Thank goodness lovely brother left some batch cooked meals for him. He carefully researched ways to introduce calories, like roasting in duck fat, meat with higher fat levels (pureed once cooked), using veg water/making proper stock, and of course adding (lacto-free) dairy to just about everything. Even a home made rice pudding which he puts honey in.

      Poor Dad was asking for this, forgetting brother had asked him if he wanted another one making, and Dad had refused... next minute, asking mum to heat it up, her looking high and low, and realising that there wasn't one. Poor Dad.... think I will cook one up for him to tempt his appetite again...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


        Ugh, constipation is the bane of my life, and of many others on the forum - it can become the worst 'symptom' of MND 😥😥

        Originally posted by Positive vibes View Post
        he keeps getting constipated ... he said again he had no appetite
        Chronic constipation will do that, suppress the appetite. Any chance the laxatives could be taken in a drink? And drinking lots of water is probably too challenging for him now, that only compounds the issue.

        I used to take that Calogen stuff 🤢🤢 thankfully not for long orally, as soon as I got my feeding tube, in it went!! They are good for calories though.

        Sorry to hear of your brother, hopefully, as you say, he just needs a break/to sort himself out and he'll return with renewed focus...


        Sending you a ginormous hug and a smoochie 🤗😘

        ​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 Ellie View Post
          Ugh, constipation is the bane of my life, and of many others on the forum - it can become the worst 'symptom' of MND 😥😥


          Chronic constipation will do that, suppress the appetite. Any chance the laxatives could be taken in a drink? And drinking lots of water is probably too challenging for him now, that only compounds the issue.

          I used to take that Calogen stuff 🤢🤢 thankfully not for long orally, as soon as I got my feeding tube, in it went!! They are good for calories though.

          Sorry to hear of your brother, hopefully, as you say, he just needs a break/to sort himself out and he'll return with renewed focus...


          Sending you a ginormous hug and a smoochie 🤗😘
          Ellie

          I think I am getting that same complaint from Dad more and more. Constipation, discomfort, bloating, lack of appetite and tiredness when the laxatives work and he is trotting back and forth all day.... Most of the time he isn't moving from his chair, apart from a little physio (not every day), and occasional dog walks, so that can't help with the digestion process. I keep thinking that the upright and walking around movement, encourages, ahem, 'movements' working through his system, even if this is just gravity and being upright helping this.

          Still isn't keen on drinking water with thickener in it. So, will drink milk (best option least coughing), juice (cough fest) and tea (cough fest as won't use thickener or have it milky). This is despite the physio feeling he is dehydrated... still, at least he is still eating (puree) and drinking, so I am thinking positive.

          He did seem happier now that 'things' have moved, so to speak, and managed a good dinner. Had to assist Mum as she couldn't recall how to operate hob or microwave, although she was ok preparing the vegetables herself, prompting needed to remember the gravy. She did remember to get out a batch cooked meal portion for Dad, although not for herself... so, had vegetables and no meat. I keep encouraging her to eat better to keep herself as fit and well as possible, but, she keeps on saying that 'she doesn't matter, Dad does'. I have to jump in to tell her she does matter, but, it makes me feel gutted she says that.

          It also shows me that she needs a lot more support than she admits to. Yet, she surprises me still that being set 'on task' she gets things done. It's like there are gaps and we can't figure out where they are, a kind of constant guesswork, like a moving maze (think H.P. film 'Goblet of fire') so we are always playing catch-up.
          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


            My dear mother had Altzimers for three years before passing on. I'm sorry to say that I saw her as little as possible because I was so upset that she didn't know who I was. Not her fault but that's how it went. ☹️
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

            Comment


              Originally posted by matthew55 View Post
              My dear mother had Altzimers for three years before passing on. I'm sorry to say that I saw her as little as possible because I was so upset that she didn't know who I was. Not her fault but that's how it went. ☹️
              matthew55

              Don't be sorry, Alzheimer's is a really horrible illness, and we don't know how it will affect our loved ones or ourselves when it happens. You have to cope the only way you feel you can. I would bet that she had good care (carers/care home) and the research I have done means that people with Alzheimer's Disease are happy in their own world because they are unaware of what they have lost, simply can't remember what they have forgotten. So she wouldn't be sad you weren't there.


              I am sure your Mum would rather you have remembered her as she was before the illness took hold, not how she became. My Mum is early stages and takes meds, & still knows us all, but I read of other families who don't even have that small consolation. The worst part is reading that in the future, it robs you of the person you knew. Almost like they have already passed/gone from you emotionally/mentally, yet their body is still there. They can potentially totally change personality, so, wouldn't be the person you knew eventually. In fact, looking on anecdotes, relatives are sometimes surprised that people with AD are happier in care once settled in because there are more things to do/stimulus, social interaction, with staff trained to help with their needs - much more enlightened now in many cases. Take care 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


                Can't believe it has been so long since my last update. Too much going on to delve into....

                Positives:

                Dad now has his rise and recline chair (thank you MNDA!) and enjoyed showing it off to me, pressing all his buttons. I am just glad he accepted it.

                Also, has final outdoor hand rail (done today). So that's now 2 grab rails at front door, one at door to lean-to with step, and large sturdy one at the door to garden (outside). Result!

                Another walker (indoor one) is coming at the weekend for him to trial, although he still uses the quad stick at the moment. The walker he has is great, really sturdy with hand brakes, folds for putting in car boot, but it is heavy to lift although he can just about manage with a bit of jiggling to get up and down kerbs. Hoping that an indoor one is nice and light so he can push it easily.

                Still able to use bed rail.

                Still has wheelchair but not used yet, must persuade him to give it a spin soon, its a manual one so will give one of us a workout!

                Still able to enjoy pureed food (thanks to Bro's good cooking).

                Still has iPad, but, not utilised it yet, at least it is there ready for him.

                Negatives:

                Still won't use his thickener (powder to add to thin liquids like water, juice, tea) - I think he struggles to recall that he has to put it in first, then add liquid, but it needs mixing in so I think we should administer it for him. I do notice him sipping and coughing (and won't let me make his tea milky as he likes it strong)...
                When he tried he sprinkled it on his juice, stirred a little, and then it settled into a jelly at the bottom of his glass which put him off... And as for it's effect in tea, even the SALT admits its not very nice in that... at least he does drink milk which doesn't set him coughing.

                Still doesn't have 2 supplement drinks daily. Lucky if he has just one... does take the 3 x 30ml 'shots' of 'strawberry emulsion' well, 2 times out of 3 some days...

                Still won't tell us if he will get a feeding tube... but, I am not going to get stressed over this (or stress him out over it). It has to be his choice....

                Does report more difficulty getting out of his bed now, even with rail and quad stick... and legs weaker, although thankfully no more falls as he is being more careful and mindful now.


                So, all in all, still soldiering on and at least the Olympics are giving him a lot of enjoyment - I am pleased he has a good distraction to get engaged in.
                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 sounds like my Dad with the Olympics (much to my Mum's dismay) It's really helping keep him happy throughout the day till about 3pm then he's really tired and could go to bed really, but he hangs on a bit longer xx

                  Comment


                    Positive vibes Thanks for the update - things seem to be less frenetic and overwhelming than the early days and you're all doing your best to settle into the new equilibrium.

                    Thrilled to see bro back on the scene and helping!

                    Hope you are doing well.

                    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


                      Thanks for your time to update us despite your hectic days. Sounds good mostly. 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 Daught21 View Post
                        Positive vibes sounds like my Dad with the Olympics (much to my Mum's dismay) It's really helping keep him happy throughout the day till about 3pm then he's really tired and could go to bed really, but he hangs on a bit longer xx
                        Daught21

                        Yes - its a positive as he was getting fed up watching tv all day, even though he has always been a telly addict, mind you he often falls asleep in the day as he has bad nights....
                        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 Thanks for the update - things seem to be less frenetic and overwhelming than the early days and you're all doing your best to settle into the new equilibrium.

                          Thrilled to see bro back on the scene and helping!

                          Hope you are doing well.

                          Love Ellie 🥰
                          Ellie

                          Things are definitely calmer, with less specialists making appointments although they phone review from time to time...

                          Bro is lovely with Dad, and is much more practical, taking on a lot of Dad's previous role... it gives Dad peace of mind that things like car maintenance, DIY/fixing stuff etc still gets done - I am sadly lacking in those practical skills.

                          Just wishing that he could calm down and let Mum help more, sadly he is very impatient with her...

                          Plodding on thank you... 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


                            It's LOROS day session today so I best get on.... this is such a boon as Dad gets out the home, talks to people especially the other chap also with MND, does quiz, gets massage, physio, free meal and the staff are so lovely. It is also respite for Mum and bro, knowing he's somewhere safe too, although it is strange not seeing him in his chair, he is such a fixture in the lounge. Definitely good for all of us, not just Dad, emotionally and mentally. Take care all 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 Positive vibes View Post
                              DIY/fixing stuff etc still gets done - I am sadly lacking in those practical skills.
                              YouTube - 'How To' videos for everything 😘

                              ​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 try instant potato and puree whatever and mix in the potato to make it a firm puree ,you can get jelly and make desserts ,with that, I bought jello (it's not the dreaded milk based kind)from an American importer, so you can have a dessert that doesn't choke you
                                I made it with sweetened soya milk but it's sweet so you could use unsweetened plant milks as cows milk is very sweet,or for a dessert you could buy ready brek to thicken desserts ,I buy things like that as I choke because of asthma and nerve damage .
                                So glad your brother is there it's hard to care for one parent never mind two(his patience will grow I wasn't as patient all the time )
                                My mother accepted the wheelchair but didn't like to leave very often, wish memory foam had been available when she was alive .
                                She used a travel cot sides(they had white mesh on them and thin rubbery plastic over the tubing) not chrome the metal ones .

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