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    Originally posted by matthew55 View Post
    One of the reasons I got carers for my meds was I was forgetting them. My mum had Alzheimer's so secretly I hope I do as she was happy in her own world. It's everyone else who suffer with it. ๐Ÿค—๐Ÿ˜˜๐Ÿ˜๐Ÿ˜xc
    matthew55

    This is so true. Mum seems oblivious in her own little world when she is pottering around the home, and, doesn't seem at all unhappy. 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


      Originally posted by Ellie View Post
      Positive vibes How old is your Dad, if you don't mind me asking.

      If he finds the side effects from Riluzole are too onerous, he can cut down to once per day, or stop it completely - if he doesn't want a feeding tube, I wouldn't be worried about him stopping Riluzole if it's sapping his energy. Life is too short... xx
      Ellie

      He is 82 Ellie...

      He is on a low dose once a day, 5mg. But, he is agreeing to take it for now. I am wondering whether this is to please us, or, shows he still has fight left in him. You are right. He's lived through a lot, post-war rationing, no welfare safety net, worked hard for a scholarship, worked his way up in a career through hard times, made a good life for us kids and Mum, so they are comfortable. Seen a fair bit of the world through work and immigration to another country, and back again. Now has kids, grandkids and great grandkids, so he has a full and a rich life of experiences. The most sweet thing is every day when Mum helps to dress him, she kisses him and they tell each other how much they love each other... argh, filling up again...

      Life is short, although he has had a lot of good years, it is so unfair this disease is stealing them away... disease stealing them both away from us.
      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 It is very wrong, I know, but I think sometimes doctors just see a person's age and, consciously or unconsciously, made different decisions for an 82yo than they would for a 52yo.

        It's one thing if your dad is deciding on *all* of his treatment options, but something else entirely if he's playing along with the vibes he gets from the healthcare professionals - we should all fall into the former category.

        I don't mean to upset you in any way but I know how that generation doesn't want to be a 'bother'... You truly are a special lady. xx
        โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        โ€‹

        Comment


          Originally posted by Ellie View Post
          Positive vibes It is very wrong, I know, but I think sometimes doctors just see a person's age and, consciously or unconsciously, made different decisions for an 82yo than they would for a 52yo.

          It's one thing if your dad is deciding on *all* of his treatment options, but something else entirely if he's playing along with the vibes he gets from the healthcare professionals - we should all fall into the former category.

          I don't mean to upset you in any way but I know how that generation doesn't want to be a 'bother'... You truly are a special lady. xx
          Ellie

          You haven't upset me, Ellie, its ok. I get that vibe from the local GP's who, although I know are over-stretched beyond belief, didn't see him for 6 months and then referred him to Geriatrics. And then Geriatrics, when he quite reasonably told them to cancel the appointment because he had a diagnosis, questioned his right to cancel and made a new appointment. Which he had to then cancel again... That just made him and the rest of us, feel they were dismissive because of his age, and their unconscious bias spoke volumes. Same attitude from the local chemist, who, on questioning him getting eye drops for taking orally, and told of Dad's diagnosis, immediately said 'Well he's had a good life'. I know, but, really don't want to hear that from everyone.

          That's what gets me about the consultant for his MND, talking about whether a feeding tube is worth considering, and saying that to him. I get they have so much experience, and know this thing is progressing very quickly, it just seems so harsh saying that. He is just repeating it, like he is giving up, even though he is still going to listen to the nurse (from HENS), coming to show the options. I asked to make sure.

          Then again, I feel I am torn between not wanting to lose him, he's my Dad, and not wanting to prolong his suffering either. Rock. Hard place. Insert expletive here...

          It is getting so that, when he eats a large pureed portion, and is doing really well that day, I feel unrealistically happy that he will do ok. Likewise, feel depressed, when I learn he still can't manage 2 supplementary drinks a day... need to get a grip on these roller-coaster emotions.

          Poor old Mum disappeared yesterday to the local shop, doesn't take her phone (trying to explain its a good habit for her to get into), turned up an hour and a half later with dog treats, whilst me and Dad were fretting about whether to put dinner on, so it was much later than usual. Thankfully it made Dad more hungry so he ate a really good portion. We aren't sure why she was so long on a short walk, and are starting to think she will be one of the 'wanderer' type of dementia sufferers... trying not to stress, trying to be there for her... brother says she keeps wandering aimlessly, buying stuff she already has (bought 2 glass jugs when she already has 5 at home), duplicating food they already have.... ah well. One thing at a time.

          Just need to say: Thank you Ellie, you are an inspiration. 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


            I get used to people talking around me and not to me and too many health professionals think that they are God. Stay Strong little lady. ๐Ÿ˜๐Ÿ˜˜๐Ÿค—๐Ÿ˜xxx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

            Comment


              Big hug to you Positive vibes

              I know I was advised to get a feeding tube asap, as my ALS was progressing quite quickly - unlike your Dad, I was young, 38yo, but we should all be given a fighting chance, if that's what we want. xx

              โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              โ€‹

              Comment


                Originally posted by matthew55 View Post
                I get used to people talking around me and not to me and too many health professionals think that they are God. Stay Strong little lady. ๐Ÿ˜๐Ÿ˜˜๐Ÿค—๐Ÿ˜xxx
                That must be hugely irritating... and yes, medics 'they who feel they should be obeyed'... hmmm.

                Thank you young Matt (don't know why I keep thinking you are a spring chicken, but, maybe you are 'young at heart'?) 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 Ellie View Post
                  Big hug to you Positive vibes

                  I know I was advised to get a feeding tube asap, as my ALS was progressing quite quickly - unlike your Dad, I was young, 38yo, but we should all be given a fighting chance, if that's what we want. xx
                  Ellie

                  This is what the MND team were saying to Dad. At first... get one ASAP.

                  Now they seem to be changing their minds... and I can't work out if it is because he is progressing so quickly, or, if they feel at his age, it is either too risky, or, he isn't a priority if he isn't fighting? So hard to know... he has said several times he wanted things over with, and has said yes and then no, even to simple adaptations...

                  Got his atropine drops and anti-nausea meds to him. He couldn't even squeeze out the drops himself , which are to help reduce mucus, so I did that for him, and asked brother to do it later on. Can't believe his grip has gotten so much worse. Although he still reckons he is safe to drive nurse coming tomorrow so I am going to mention (and I will have to deal with the moaning later!) - if you can't squeeze out 2 drops of fluid from a tiny plastic bottle, I have serious doubts he can drive....?

                  Fighting chance, but, still not sure he wants to fight... gah...

                  I would seriously like to kick MND's buttocks...
                  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 Rather you than me taking a person's car keys away ๐Ÿ˜๐Ÿ˜€

                    Good luck! xx
                    โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    โ€‹

                    Comment


                      Originally posted by Ellie View Post
                      Positive vibes Rather you than me taking a person's car keys away ๐Ÿ˜๐Ÿ˜€

                      Good luck! xx
                      Ha! I hope I am a tiny bit more subtle than that... as in...

                      'Oh dear - you 'forgot' to mention to nursie about how poor your grip is, we are having to squeeze your meds out for you now..., and, I wonder how that affects your abilities, like ahem, well, driving? When you said your right arm is practically useless? Cough.'

                      Where hopefully nursie, leaps in concerned, 'What, are you still driving? Oh - oh, maybe you should stop now/be assessed by DVLA/any other alternative'...?

                      Ok. Maybe not that subtle. I won't take the keys, I will still ask him to make the final decision, although I am wondering if he ever will. I think I will be downgraded from 'What would we ever do without you?' to 'Interferring old bag'!
                      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 positive vibes,
                        I to only recently had the chat with dietetics nurse about needing to get a feeding tube in place ASAP.This was based on recent lack of appetite, weight loss, needing to use a NIV at night.
                        The suggestion initially was for a PEG , but the procedure wasnโ€™t successful due to large polyps found in my stomach.So next plan was for a RIG feeding tube which will do the job but inserted via the stomach rather than via mouth.Fitted last Thursday.

                        I believe pre operation considerations were based on my general health, breathing and weight loss as well as inability to take by mouth enough food to maintain my weight.
                        A Naso gastric tube was not given as an option.I did have an NG in place during the RIG procedure.

                        I do hope your dad is given the facts to enable him to make an informed decision.Initially I was against a feeding tube until I realised my ability to eat enough was diminishing .Also the palliative nurse explained that the feeding tube might be necessary at a later stage to administer medication via it if swallowing becomes difficult.

                        Each person has a different journey with MND as you well know.I hope the decision for you dad isnโ€™t just about his age but considers WITH him what he wants whilst exploring the options.

                        Best wishes
                        Mary



                        Comment


                          Originally posted by Mary C View Post
                          Hi positive vibes,
                          I to only recently had the chat with dietetics nurse about needing to get a feeding tube in place ASAP.This was based on recent lack of appetite, weight loss, needing to use a NIV at night.
                          The suggestion initially was for a PEG , but the procedure wasnโ€™t successful due to large polyps found in my stomach.So next plan was for a RIG feeding tube which will do the job but inserted via the stomach rather than via mouth.Fitted last Thursday.

                          I believe pre operation considerations were based on my general health, breathing and weight loss as well as inability to take by mouth enough food to maintain my weight.
                          A Naso gastric tube was not given as an option.I did have an NG in place during the RIG procedure.

                          I do hope your dad is given the facts to enable him to make an informed decision.Initially I was against a feeding tube until I realised my ability to eat enough was diminishing .Also the palliative nurse explained that the feeding tube might be necessary at a later stage to administer medication via it if swallowing becomes difficult.

                          Each person has a different journey with MND as you well know.I hope the decision for you dad isnโ€™t just about his age but considers WITH him what he wants whilst exploring the options.

                          Best wishes
                          Mary


                          @Mary C

                          Thank you for this Mary, sorry to read it didn't go quite as smoothly as hoped, but it's great that you got there in the end. Similar discussion with Dad & Dietician, then later with Dr's - only they said meds and supplementary drinks could be taken via feeding tube, with him still able to eat puree at the moment. The problem is it takes him so long to ingest a pureed meal, he doesn't finish it, it's cold and then understandably unappetising. Then he says he isn't hungry, so, he isn't increasing his portion size or drinking the 2 supplementary drinks...

                          He is willing to carry on eating this way, but, he is definitely struggling now. Some of his meds are in tablet or capsule form, and they did try to address that too, however he panicked thinking that they were going to somehow dilute his pain-killer (morphine-based and he acknowledges he's addicted to it - they have no problem with him continuing this at all, at this late stage).

                          All they were suggesting was a patch rather than a tablet, as easier to take, and in fact it gives a better dosage as it is continuous, whereas the oral tablet wears off so doesn't give as much pain relief.

                          Poor old Dad. He didn't listen, just recounted his attempts to get off the pain killers, and his withdrawal symptoms. Need to talk to his GP and explain the problem that he needs to transition from tablets/capsules, into liquid/patches. At least his new meds are liquid (atropine and anti-nausea).

                          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


                            Pretty exhausted.

                            Tuesday morning, Dad fell backwards, hurt himself falling against his new walker. That same afternoon nurse due to visit, although he said he was ok, and she checked, bruising and some back swelling but nothing worse than muscle strain when he tried to get up but couldn't. Poor Dad is still bruised from falling in the back door way Friday before last. He is going to be all colours over his back and sore and stiff...

                            The unfortunate thing was, brother had gone out to buy a grabber he'd seen on-line for Dad (cheap supermarket ยฃ3-ish) sadly sold out. Mum was in the bathroom and being deaf never heard a thing, unfortunately with her problems, she can be in there for some time. I wasn't there, trying to step back more when my brother is there to have a break. So poor Dad floundering on the floor like a fly in a spider's web, unable to turn over, unable to use his arms to push himself up... by some freak of coincidence 2 minutes later my younger brother called in and found him, scooping him off the floor carefully, checking he was ok.

                            Otherwise poor Dad could have been down there for some time, with Mum oblivious, really shows how they need support.

                            With family and nurse we have agreed:

                            No more bending over to pick stuff up off the floor for Dad!

                            Lifeline bracelet or pendant

                            Not just discussing local council help - actively pursue it

                            All of us strongly urging Dad to consider giving up driving (he didn't say yes or no and we aren't taking his keys)
                            This is because he said his weak right leg actually gave way when he was bending to pick up a paper from the floor unaided, and that's the leg/foot he uses to drive his automatic car.

                            He always has his mobile in his pocket, yet, didn't think to try and use it. Though he has some difficultly getting it out of his pocket and using it now. A pendant or bracelet has a big button on it which should hopefully be easier for him to use in an emergency like this.

                            Listing off his symptoms to nurse, his muscle wastage/mobility has worsened again. She is going to chase up ramps/grab rails which the council are meant to be doing for him. Again, she talked about feeding tubes, and what the doctors had said. Dad is still willing to listen to HENS nurse to see what is involved. I am finding it really sad and depressing that again they were wondering if it was worth it.

                            Stuff going on with Mum, so, that's been tiring to sort out spent a lot of yesterday in discussions with AgeUK and carer's support, feeling utterly spent and drained yesterday. Brother is glued to my Dad's side, keeping a close eye on him, paranoid that he is going to topple over any minute.

                            Carpet fitters finally came to fit the carpet tiles they promised to do on 8th June. Then asked for more money for doing it, when Dad had already paid for all of it to be fitted on the 8th! Grrr. Think they were trying it on, so, rang them and it was agreed it was their 'mistake' - this is despite them knowing my parents have been through the trauma of the fire and its aftermath, whilst dealing with 2 life-changing illnesses. Their excuse was that it was a different set of fitters and not communicating. There are no flies on Dad and he said that one of the fitters was the same! At least they replaced the bed base that they delivered damaged.

                            So we all helped putting the big chest in the bathroom, which can now finally be filled with linens/towels etc. Which gives more room in the bedroom, and the divan drawers in the bed can also be filled with more linens/clothes, so the place looks more like a room and less like a chaotic jumble sale with stuff everywhere. Far more of the stuff sorted for donate, keep, sell, bin.

                            Now Mum can begin sorting what's in the garage of the 113 items of hanging clothes and 15 boxes... 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


                              Oh what stress VB, not surprised that you are exhausted. I hope that the grab rails for your dad get done very soon and that all of the other issues are resolved. Grab handle things are widely available online. Look at NRS and even Amazon.

                              Love and hugs ๐Ÿค— ๐Ÿค—, 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


                                Lynne K

                                Thank you Lynne, I needed a quick huggle... 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

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