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DAD - MND diagnosed now. What next?

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    Originally posted by Positive vibes View Post
    Isn't using toilet frames at all as too high for him to have a bowel movement.
    Would popping his feet onto a little step help? I use one of those bathroom steps for kids, it raises my legs and knees, making it easier to perform. 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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      Originally posted by Ellie View Post
      Would popping his feet onto a little step help? I use one of those bathroom steps for kids, it raises my legs and knees, making it easier to perform. xx
      Funnily enough, I did mention this to him, before coming home and reading your post! Psychic moment or what?

      But unfortunately I got the 'look' as in 'no way Jose'.... sigh.

      And just as I telephoned the MND nurse today, she said she was just about to ring me, after getting my message yesterday. This is getting spooky now....Where is the scary music when you need it?

      So updated nursie on Dad's reluctance to 'perform' on his 'new stage', not eating as much as proscribed by Dietician, not exercising as much as Physio suggests, still reluctant to take liquid carbocisteine, despite, finally, getting it this afternoon and making a special trip to get it to him. After he kept asking me for it like it was desperately needed....

      And then he rang me to say how he was told to do a half dose of it. And so went back round to discuss. Basically he was telling me how he would only take half a sachet (looks like one of those long tubes you get in cafes with your sugar or milk in and probably just as fiddly to open), morning and night. When I tried to say that isn't half dosage, as it says take one 375ml sachet 3 times a day. Then, saying he wouldn't start it tonight. I gently said that this was for his benefit, to thin mucus, as the last thing he needs is a lungful of it...

      I realise he just doesn't want to take it. Despite not telling us mucus still wakes him up, Mum, bless her, noticed he wasn't coming to bed until midnight or later as she is usually late herself, then he's getting up at 4 or 5am to cough up mucus. Then falling asleep upright a lot of the day. He really flagged after speech therapist visit.

      My poor Dad. So much info, so many things to remember, he is tired out by it all. The worrying thing is the not eating well or sleeping properly. Although he has agreed to a feeding tube - taking us all by surprise, if he carries on like this he will be too thin and weak for them to attempt it by the time it happens....

      Was really cheeky and called OT, as he was convinced she is coming tomorrow (she wasn't), it is just some more adaptations for him from the local delivery company (NRS). So we have arranged for her to visit as if it were all arranged already! Shh, don't tell him....

      She is casually going to produce the stand up on its own stick (don't know what else to call it) because of him telling us he is fearful of falling, lightweight aluminium, that she just 'happened to have spare' in her car. Ahem. Which will be left strategically in the back lean to where he puts on his shoes before taking the dog out. Even if he ignores it and it grows cob-webs, maybe he will consider taking it out for a spin.

      Aw... he just rang to say he is only going to take 50ml at a time (x three per day), because he has 'worked out' that the sachet is 750ml.... talk about not wanting to take it. He is convinced it makes the mucus worse.... Poor old Dad. I just agreed with him, don't want to nag, but he really isn't giving it a fair trial as nurse asked him to. Doing everything to convince me he is taking the half dose, when really, it is barely sufficient for one dose....

      He has figured out that using a syringe to measure from a small glass beaker of it will give him a 'correct' dose of 50ml.... if anyone has any tips on how to get him to give it a fair trial, let me know.....

      Sadly, I think the taking of capsules has put him right off it, and blame myself for stupidly picking up those meds. Makes me want to slap myself sideways into the middle of next week...

      The horrible reality is hitting me that it is extremely difficult for him to adapt to any of it. He is telling us more what he thinks we want to hear. Then telling different specialists different things, and not revealing the full extent of what is happening to him, but they are more adept at winkling things out of him.

      The second awful reality is he is progressing on this faster than any of us thought. I think it must all be exacerbated by his age, lack of energy and fight, lack of sleep, lack of food, and he is now a lot more forgetful.

      I am losing him and having to face this... and I don't want to.
      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 was a depressing post, had a poor night's sleep myself....

        Another day dawning, and I am dusting myself off, to start again. This darker line of thought needs to be kicked into touch. I need to focus on what is best for Dad yes, but, I need to communicate better with him about what he needs and what he can cope with, to be as comfortable as possible, and enjoy what time he has with us all.

        That means bringing up the topic of additional carer's too. I am finally, reluctantly, accepting that I can't do it all. If Mum was 100% I would try to follow their wishes of no outside care at all. But she isn't.

        I realised that yesterday when, instead of staying home to await speech therapist and listen to what his needs/symptoms were, and solutions, she had gone out. Even though Dad wanted her there and reminded her of the appointment. Even though I had let them both know I was contacting GP for her too so there would be a phone call appt at least for her...

        She can't cope as she isn't well herself. There wasn't any reply or response when I told her after the speech therapist had gone about Dad accepting a feeding tube, and when I repeated this, she worried about it being visible. It won't be as therapist explained the tube is discreet and taped to his abdomen. There was no response again when I talked about us all being trained to help administer it. I think it is all too much, even if she was 100%.

        She has talked about wanting to die before he does. Not wanting to be here without him. Crikey. I was trying to make this a more positive post than the last one... My instant response was to ask her not to say that. But, what can I really say to that? They will have been married 60 years next year, and married young, and do everything together. Like they are each one half of a whole.

        Right. No point going back to bed as I am wide awake pondering all this. Need to get ready, breakfast, and prepare for OT's visit. Dad is too polite (hopefully) to be rude to OT when she produces that stick...! And when she takes the toilet frames away, to replace with hand bars instead, I will be in the doghouse as he will know I have said he isn't using them... I am going to need a broad back and thick skin for this!
        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 .Are you in contact with your nearest MNDA branch. It might be a good idea to discuss the possibility of having an Association Visitor as much for you than your dad. Have a look on the main website to get a brief understanding of what the role can offer.

          Comment


            Positive vibes Wishing you a good a day as possible

            Richard
            Richard

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              Positive vibes I know it's not what any of the 3 of you ever wanted, nor envisioned, but it will soon become physically impossible to be the sole carer for both of your parents - it has nothing to do with love and loyalty, nor it is a reflection on your abilities, it is a simple matter of there not being enough hours in the day, nor can you be in two places at once.

              It's good that you know you need help, so now what to do? Maybe start with the social worker in LOROS, see what they say about carers, and ask about applying for CHC.

              Big, big virtual hug to you, you are an amazing daughter any parent would be very, very proud of. (but get outsside carers in to help!!!)

              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 Bowler View Post
                Positive vibes .Are you in contact with your nearest MNDA branch. It might be a good idea to discuss the possibility of having an Association Visitor as much for you than your dad. Have a look on the main website to get a brief understanding of what the role can offer.
                Bowler

                I have finally rang them, to ask for one, although it's more for me as Dad still doesn't want one...
                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
                  Positive vibes Wishing you a good a day as possible

                  Richard
                  richard

                  Thank you kindly sir....
                  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 know it's not what any of the 3 of you ever wanted, nor envisioned, but it will soon become physically impossible to be the sole carer for both of your parents - it has nothing to do with love and loyalty, nor it is a reflection on your abilities, it is a simple matter of there not being enough hours in the day, nor can you be in two places at once.

                    It's good that you know you need help, so now what to do? Maybe start with the social worker in LOROS, see what they say about carers, and ask about applying for CHC.

                    Big, big virtual hug to you, you are an amazing daughter any parent would be very, very proud of. (but get outsside carers in to help!!!)

                    Love Ellie.
                    Ellie

                    Erm, I am finding that out rapidly.... unrealistic expectations...

                    I have finally rung MND connect helpline, in the hope of AV, but Dad still refusing them... or outside care. If I start with me being able to chat to someone its a step in the right direction.

                    Think I need to work on them both to accept this. Even if someone is just coming in to give Dad his meds/supplementary drinks or feed through the tube (as Dietician suggested) 3 times a day. Then I won't need to worry he's had the right meds at the right time at the right dosage, AND is definitely being prompted to have his supplementary drinks.

                    He simply doesn't seem to remember now (or is conveniently 'forgetting') and I am not being tough on him. I can imagine a carer just being cheery and saying time for meds/drink and him not daring to argue!

                    Doesn't help that Mum refuses all extra support from the Dementia Team. Got a call from the consultant to ask again if she would be willing to be referred and again a definite nope.
                    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

                      Bowler

                      I have finally rang them, to ask for one, although it's more for me as Dad still doesn't want one...
                      Excellent. It might take a little while for you all to get to know one another but then I’m sure you will all get something out of the relationship.

                      I wish you and your family all the best.

                      Comment


                        So. Got there today. Waiting for OT. And waiting. And waiting. Helped Mum sort out the final boxes, clothes and some clearing in the other rooms where belongings are scattered. Finally rang to find that the OT coming tomorrow, with the delivery company coming only today! Doh... that's lack of sleep for you.

                        Chair risers installed with approval from Dad. So that's something. No seat cushion as suggested but it seems high enough without it anyway. OT coming tomorrow. Ahem... re-wind...

                        Brother finally turned up after promising to for weeks (and I had given up on promises), but, was too tired with lack of sleep and journey to discuss much. So, I am plotting and planning to show him all the notes and update him on Mum and Dad (and fire aftermath), in the hopes that he will be here more permanently. So far, it sounds like he will be here at the start of the week for a few days, going back for a long week-end.... and we need to co-ordinate this if it's going to work... really not sure if this is for a few weeks, months, or just now and again.... keeping fingers crossed that it is consistent but sadly he's not always been so in the past. Grabbing any help that I can and holding on to it.

                        Is it weird that I feel oddly possessive of looking after the parents after doing it for so long? Even though it's been exhausting and I do need another pair of hands? Maybe it's because we have gotten into a routine and we now need to re-organise it.... so, unsettled again....
                        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’m glad that your brother is making an appearance and I hope that it becomes regular. Good luck, 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 Lynne K View Post
                            Positive vibes I’m glad that your brother is making an appearance and I hope that it becomes regular. Good luck, Lynne x
                            Thank you LynneK, so do I...
                            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, all geared up for Physio and when I get there, she was early, been and gone, leaving a 4-legged stick and toilet frames without raised seats all in place... best laid plans and all that. No worries as brother there and got to meet the physio & things went smoothly. Really need to stand back and relax as my brother handled it perfectly. No arguments about the stick, and I even persuaded Dad to take it out for a spin when he walked the dog. So we were all relieved as he has said he fears falling when stooping to pick the poop... Yay!

                              Took him for his blood test, and again, practising driving his larger car, with 'Dad points' of approval.

                              I realised that there is someone there to help them, and that it is a tremendous relief, my brother has already worked out how to fix the shower. I love him! He's moved heavy things around for them, getting stuff back where it was before the disruption of the fire, renovation, etc. and I can see that it is another big relief for Dad and Mum.

                              Mum had been melting down again, sadly, about a certain item not returned, so I rang the specialist company that did the cleaning and clearing. Bless the chap dealing with it, he tracked it down, rang me, and it is coming back to Mum. Doesn't matter to her that it is also not repairable. Or that they say the smoke damage may cross contaminate everything else in the room. She is already planning to air it out for weeks if need be. It's the sentiment. So much else lost, old photo's that can't be replaced, old Xmas cards she'd kept from now deceased relatives (the last ones they sent to her).

                              Unfortunately, they also advised that another 15 boxes of stuff is ready to come back, with 133 hanging items of clothes.... argh... we decided to house it in the garage while the weather is dry, so it can be gone through bit by bit, as brother is sleeping upstairs amongst the piles Mum has just sorted, with his own luggage scattered around. Organised chaos. At least he brought another hanging rail, so we now have 2 temporary wardrobes and 2 hanging rails up there.

                              It is really giving Mum the motivation to de-clutter. The only glitch is that stuff she claimed she wished to give to charity or car boot, she is now saying she wants some of it back. Luckily, I have been saying all along that she needs to be certain she wants rid. And that as it's in the garage she needs to double-check and go through it again before any final decisions are made. Saw that problem coming from a long way off... judging by how she reacted to stuff just going away to be cleaned and her wailing that it would never come back. She isn't saying that now...!

                              Mum's meds have come today, (for delaying onset of dementia), and she proudly informed me she had already taken one, as advised dosage so I was well chuffed. Until I read the box and it said to take just before bed... a swift phone call to the dementia services and they say its ok, but, to remind her tomorrow to take it in the evening. Their main gist is that at least she is taking it.

                              Updated brother on her diagnosis, meds, when to take dosage, and her refusal of referral to dementia services. Plus, what all the other specialists have said for Dad... poor chap didn't sleep well upstairs as its an attic with poor insulation, so hope he gets a better one tonight. At least the weather is cooling down from tomorrow....

                              I actually felt myself start to relax today, knowing there is someone else holding the fort, and someone practical who can fix things. There was much talk of grommets and other mysterious technical things, so Dad was really enjoying a conversation about something other than his symptoms or his meds or his diet, etc.

                              Need to take a back seat, and let brother sit behind the wheel, steering us all whilst he is here. It will be all hands on deck on Friday when the next batch of stuff comes back. Really did not realise how much stuff Mum had up there....
                              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 thank goodness your brother stepped up Positive vibes , your parents raised some good uns. 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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