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DAD - MND diagnosed now. What next?

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  • matthew55
    replied
    And the Oscar for best person of the year goes [email protected] vibes 🤗😁😘😍xx

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  • Ellie
    replied
    Positive vibes Progress and hope.

    It's good to have some sort of foot stool for your dad to rest his feet when sleeping in the RR. It can put too much pressure on weak ankle and leg muscles, causing pain, if feet are 'dangling' unsupported off the end of the chair. xx

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  • Positive vibes
    replied
    Well, after a sad couple of updates, wanted to be more positive. I have reached out to a lot of places for support, for dementia, carers', and MND, had a lot of off-loading, some good offers of help, and a really, really long discussion with parents and brother. Exhausted, but, feeling more hopeful now.

    Finally, we are all on the same page, brother is calming down, Mum is a lot more cheerful (I think taking her out helped), and I have 'refereed' who is doing what for Dad, so there is no tension/conflict. I said to Dad, he's got it made, we are fighting over him to help him out and he gave us a big grin. But I can see he is mostly relieved as the last thing he needed was the stress or tension between Mum and brother. Just a matter of better communication and a reassurance that we all love him and Mum, and are on the same page. No more toe-stepping... so, hopefully everyone is agreed on who is 'in charge' of doing various things for them, with Mum especially included. Most importantly, feeling that she is heard, and she is an active member of 'Team Dad'.

    Also, I have persuaded Dad to accept the rise and recline chair, using the angle that they (the parents) are having such bad night's sleep, so Mum is bound to be more fragile, tired and emotional, and really needs the best rest to be able to look after him. So that, if another bad night happens Dad has the chance to sleep more upright in the R&R chair, as the 3 pillows thing wasn't working - moving around, falling off bed (pillows, not Dad) and sadly, just not able to settle down. Then Mum has the bed, and the quiet, to rest and recuperate/recharge herself.

    So I won't come in to find them both absolutely white with exhaustion again... spoke to MND nurses to give them the go-ahead with chair, and to advise that Dad really struggling again to eat despite the really tasty food my brother had cooked, and his frustration that he was really enjoying it, yet, struggled to get any down. Giving MND team the update to get feeding tube sooner rather than later. He can't carry on like this.

    Progress! I also emphasised that it is nothing like a hospital chair or bed, just like a really comfortable luxury armchair, that near enough converts to a single bed, with the ability to be angled exactly right for maximum comfort or alleviation of mucus (caused by lying too flat). Lets hope it lives up to my spiel. Or I will be in the doghouse... Ha! I can live with the complaints from Dad if it falls short of expectations, since at least he will have more comfort in the daytime, and it will assist him to get up in the long run, as he acknowledges his legs are weaker.

    I made sure we all emphasised to Mum that they both need support, as she insists Dad comes first, not wanting to address her own issues. For example, made her promise to take her phone if she does storm out the house, so, as we will worry about her, she has a method of contact in an emergency. I am thinking, if she is confused, or disorientated, a passer by will have the means to help her, but saying to her that she can call us for a lift if she needs us e.g. forgot bus pass, cash, etc.

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  • Positive vibes
    replied
    Well, we got to see the consultant's, and went over all Dad's symptoms...

    He really pushed himself to give a positive spin i.e. 'Look how well I am walking, look I have driven here myself absolutely fine...' etc.

    They gently questioned him, and discussed about his eating, swallowing, mucus problems and weight loss. In a nutshell, he blames the meds, nebuliser, everything else, not the disease, or, his own habits. I even said that he blames the carbocisteine for causing mucus, and they pointed out it isn't that, this only thins it out so he can cough it up.

    They also asked about a DNR, which he wants, so will go through this with him on Friday (his day session attendance at LOROS this week). Checked about future planning (LPOA etc) which are about to go in place.

    Suggested to try:

    Stop carbocisteine from yesterday up to Friday (when they will see him again). This is to drive home the point that he really needs it to stop thick mucus build-up which he can't cough up. They hope he will then agree to re-start it at the half-dose (which he hasn't yet got to - he admitted he was only on barely a quarter dose). There was a concern the meds may cause nausea, so, stopping for a few days to see if this is the case. The suggestion is though, that it is the mucus causing him to feel nausea, and again this is to hopefully 'prove' this.

    Because of nausea/mucus, he has loss of appetite and taste, hence his not adhering to dietician's recommendations. So he is just barely getting enough to tick over. Weight loss is now an alarming 1 stone 4lbs (within 2 months!)

    Anti-nausea meds (drops) if this is still an issue (which I think it will be because of mucus). Apologies for using the word every other sentence if you haven't had breakfast!

    HENS coming out to see him to discuss 3 feeding tube options, which he has agreed to having, although already said no to NG tube. Even though this is non-surgical... he is thinking of it via endoscopy (day ward) or x-ray (couple of days in hospital)... hmmmm, not sure he will do any of these as he started to look nervous about it. I feel strongly its the only solution to avoid nausea problems and get enough calories in him. Not up to me or any of us....

    He did admit to falling but said he was ok. Mentioned weaker in legs. Basically he openly said he knows he is deteriorating rapidly. They also asked about how he was feeling emotionally. He skimmed over this, as he isn't one to discuss feelings, saying it was a downer (understatement!) but he accepted it, I tried to butt in and say how he told me it was frustrating him that he couldn't do what he used to do.

    When we got back, he looked utterly exhausted (he let me drive him home), totally wiped out from the effort of trying to show how well he was. Didn't even argue when Mum said she would take the dog out. Just wanted to sleep. Took Mum shopping - whole other saga there too long to type, but, after 2 trips everything sorted & picked up some more of Dad's meds due. Saga over gardener, lets leave that one, but they are having one for maintenance thankfully.

    Brother back again, and Dad is going to have a quiet word, asking him to be kinder to Mum as she was very tearful the other day. Sadly, in his enthusiasm to help Dad, he's made Mum feel completely shut out when he is there. As Dad says, she is ill too....

    Not quite what we all hoped....

    MND nurse rang to say that although he is still ok on the results to take Riz, she wondered if he was ever anaemic. He hasn't been that before, but, I rang to double-check and he confirmed this. She feels its the lack of calories/nutrients causing low iron count. So emphasising this to Dad and Mum, and brother, the latter is a very good cook and already making a lot of tasty food for him. Advice from consultants to snack little and often, I said we were waiting on the concentrate Fortisip for him.

    Feeling really low about him. Sad and powerless - you can lead a horse to water and all that... he isn't even touching his favourite foods - chocolate. All the little pots of mousse we bought as well have barely been touched... really feel torn about nagging him to eat more, or, letting him decide how much/little to eat. And torn about him saying he would rather have a heart attack and have it over, than this...

    Wanted this to be a positive posting about positive ways to tackle this, but, struggling myself at the moment...

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  • Lynne K
    replied
    Oh dear PV, what stress. I hope that your idea of outside carers works and happens quickly. Love Lynne x

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  • Positive vibes
    replied
    Long update (for a change):

    Dad fell on Friday night, luckily my brother was there to help him up, else he may have stayed down, having no ability to use upper arms to get up and Mum not capable. Again, he is lucky to get away with bruises and a graze, nothing more serious.

    Although parents never exercised, on retirement they bought gym equipment which is in a kind of lean-to between the garden and back door. He fell onto a cross-trainer (having tripped over it) which neither of them can use anymore, on his weak side (right). Unfortunately, not being known for his patience, my brother lost it with my Mum because of it being in the way, along with all the other stuff in their home, e.g. loads of coats on the back of one door which causes 'bounce back'. As well as furniture and everything else....

    The high door frame (as with most double glazing) there is accompanied by a lower step down, which the parents 'bridged' with wobbly wood and mats, mats everywhere. I insisted the OH visit and see the trip hazard nightmare they live in. All she could advise was get rid of the mats as a trip hazard. I was asking for ramps for all these doorways, yet to materialise, to replace the Heath Robinson stuff they have piled up.

    Result, Mum really upset and tearful. Then really angry, accusing brother of all sorts, with Dad failing to calm her down, telling her off basically. So, really hoping I don't lose my brothers help.

    He got the grandkids (against my parents wishes) to move the cross-trainer in the garage with all the other carp and swopped some boxes in, so if he falls there again at least its a soft landing. I kept them out the way by saying they were moving it further down, because I didn't want them to stop it being moved out of harm's way. Thankfully, Dad is ok and thinks its a good idea, to also sell it on. Mum nearly had a melt-down when brother, on a roll, suggested all the other equipment should go to. She is adamant she will use it, even though she hasn't for months...

    Have to sort meds and be more hands on as Dad forgot he is nearly out of some of them. Possibly ask at LOROS tomorrow if they have more if they don't turn up today....

    He had a really rough night last night, with secretions, and no sleep, yet still insists he is on the 'correct' dose of his carbocisteine. Now blaming the nebuliser, 'because he used it too late' near bedtime, when this is the advice he was given, and he was insisting previously that it helped sleep (nothing to do with the carbocisteine)

    Really think his thought processes are mixed up, especially with lack of sleep, and how tense things are with Mum and brother.... even suggested him chilling out at my place to give them both space to avoid further melt-downs. Tried to talk to brother about her illness, and needing to be calm and supportive, as she needs compassion not criticism.

    Fail...

    Hoping he comes back to help Dad at least....

    I thought I would get more rest and respite but didn't sleep much either, with all the family drama, really seriously need to address outside carers for them...

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  • Positive vibes
    replied
    Originally posted by Ellie View Post
    Positive vibes I am more worried as to what and how much your dad is safely eating and drinking. Thickeners can be bought OTC if you cannot wait for it to materialise - even just a small tin to tide you over.

    If he wants a feeding tube, that's the priority... xx
    Ellie

    This is the worst part. He won't eat larger portions even if it is served to him now as a puree. Has started drinking milk at last. Chased up thickeners again (for his water or fortisip juice, or even tea) but I think you are right.

    Thank God he is seeing consultant tomorrow, He still insists that 50ml x 3 is the right dosage for his carbocisteine. Even though the packet states one sachet is 375ml... for some reason he blames the med for causing mucus....

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  • Positive vibes
    replied
    Originally posted by Lynne K View Post
    PV, sorry agree with Barry, a 4 wheeled stick is understandably not suitable for your dad since it needs lifting and placing in from of him for every step. What a stupid idea to give one to anybody who has MND. Some form of walker is much better, and 4 wheels are more stable than 3. Barry’s suggestion would work indoors but another type would work indoors and outdoors. I love my Topro but it’s too big for use in our little flat so it’s one used by me in larger rooms when visiting. I use a light weight 4 wheel walker at home. They both have a seat and I sit to do my teeth (and that includes interdental brushing each space) at night because my legs get weak and stiff if I stand to do that.

    Good luck for your mums sort out being not too problematic. Love Lynne x
    Lynne K

    OH brought it, because Dad requested it himself, so he gave it one attempt outside. The only way I can describe it, is a stick that stands by itself, on 4 legs, with rubber bungs on end of each. He does have some grip in left hand, not right, but all his falls have been inside their home. Probably due to the stupid amount of furniture, rugs, cabinets, footstools, junk, etc. he has to manouvere around....

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  • Positive vibes
    replied
    Originally posted by Barry52 View Post
    Hi PV,

    So pleased you are now arranging help though carers. I can understand your dad’s reluctance to use the stick as you have to lift and place. I tried one and soon gave it back. I am a huge fan of of “Dolly” my trolley which never leaves my side either indoors or in the garden. If you can persuade dad to use one make sure you get the one with brakes. 02EB6595-BDB5-40BA-97AE-4D278B73DF65.jpeg
    Barry52

    Thank you, I have suggested (again) but he's refused (again). Part of the problem is that he would have difficulty using it in the house due to the obstacle course that is their furniture/collection habits... and Mum's difficulty in letting go of anything...

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  • Ellie
    replied
    Positive vibes I am more worried as to what and how much your dad is safely eating and drinking. Thickeners can be bought OTC if you cannot wait for it to materialise - even just a small tin to tide you over.

    If he wants a feeding tube, that's the priority... xx

    Leave a comment:


  • Lynne K
    replied
    PV, sorry agree with Barry, a 4 wheeled stick is understandably not suitable for your dad since it needs lifting and placing in from of him for every step. What a stupid idea to give one to anybody who has MND. Some form of walker is much better, and 4 wheels are more stable than 3. Barry’s suggestion would work indoors but another type would work indoors and outdoors. I love my Topro but it’s too big for use in our little flat so it’s one used by me in larger rooms when visiting. I use a light weight 4 wheel walker at home. They both have a seat and I sit to do my teeth (and that includes interdental brushing each space) at night because my legs get weak and stiff if I stand to do that.

    Good luck for your mums sort out being not too problematic. Love Lynne x

    Leave a comment:


  • Barry52
    replied
    Hi PV,

    So pleased you are now arranging help though carers. I can understand your dad’s reluctance to use the stick as you have to lift and place. I tried one and soon gave it back. I am a huge fan of of “Dolly” my trolley which never leaves my side either indoors or in the garden. If you can persuade dad to use one make sure you get the one with brakes. 02EB6595-BDB5-40BA-97AE-4D278B73DF65.jpeg

    Leave a comment:


  • Positive vibes
    replied
    I am completely cream-crackered.

    Brother rigged up a double clothes line for all the hanging items (133 of them!) when Mum has already filled 2 wardrobes and a clothes rail with the first lot of stuff returned. She ended up saying skip the lot by the time the 15 boxes came in. We are all exhausted....

    And now we need to sort between: keep, skip, donate, sell. Given that Mum hasn't seen the stuff for 6 months and not missed most of it, maybe she can let go a lot more. I blinkin hope so.... The stuff that is not deemed fit to repair is also due back, because she was bewailing it going, so there is even more coming.... I think if she sees it, it registers that she doesn't really have room, as everything was piled around the room previously. In the words of the fire commander 'like a tinderbox waiting to happen'. I guess we should be thankful the first lot of burned stuff the fire service removed was skipped...

    Dad is getting progressively worse, sadly, he notes:

    Difficulty swallowing - porridge, rice pudding now. Notice he isn't treating himself to his favourite chocolate, it's just sitting in the fridge... I have suggested oatmeal or 'Ready Brek' type stuff (other breakfast cereals are available!) but got the usual 'face pull' from him.

    Still waiting on the smaller 125ml ready made Fortisip (a concentrate since he is struggling with the 200ml, barely managing one a day when it should be two)

    Still waiting on the thickener that the language therapist was sending, Dad still trying the fortisip juice and coughing on it, and has finally given in and switched to lacto-free milk as a drink

    Refusing to use the '4-legged stick' after one try. Still don't know why he won't use it, just keep getting the 'not getting on with it' comment

    Complaining that the raised chair (which he accepted after refusing rise and recline) isn't comfortable i.e. he slips down more when falling asleep in it, but, still not accepting 'R&R' one

    MND nurse rang to say his palliative care appointment is slightly earlier in the day (by 15 minutes); no point telling Dad as he insists on setting out an hour earlier for every appointment anyway, when the trip is 20 minutes in total. I timed it...! Bless him, he seems to get more and more anxious about times now, so, don't want him stressing out.

    Positives:

    Managed to finally get a gardener for them via AgeUK, as MND nurse said there is a grant (after seeing the trip hazard horror that is their 'garden'). Every gardener in the local area seems to be permanently busy because of restrictions lifting.

    Brother has fixed shower! Yay!

    He is also fetching 'his boys' to see their Grandad for Father's Day, although sadly Dad doesn't want to go to the meal out that was planned for him. Understandable as he has to have it all blended down now, plus, it takes him a long time to eat. At least they get to see him before the palliative care consult, when discussion of his feeding tube options, etc is happening next week. So we can make some more memories. Must get camera sorted.

    Dad is relieved the end of the fire saga is in sight. Just the carpet tiles, and the ruined furniture, to come. Then we can show the burned stuff to Mum, proving it is beyond repair as the insurer's stated (she doesn't believe it) and we can arrange to dispose of it.

    Mum is planning to get a skip to dispose of stuff! I think it is sinking in at last...

    Reached out to a local authority/charity for carer's finally. I shocked myself by bursting into tears on the phone when describing what's happening. I thought I was handling things well, and more together, until then. They are sending links/info for me to wade through... it is a positive, as, it is a way to learn how to cope with it all.

    Dog has restrained from performing any spectacular displays from either end. Now that's a positive. Ahem. A 'relief' for both of us...

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  • Positive vibes
    replied
    Originally posted by Lynne K View Post
    Glad that things are moving Positive vibes and your brother being there is giving you some relief, love Lynne x
    Lynne K

    Me too! It's nice for the parent's to see someone else for a change, who knows one end of a drill from the other.... love PV x

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  • Positive vibes
    replied
    Originally posted by Ellie View Post
    Oh thank goodness your brother stepped up Positive vibes , your parents raised some good uns. xx
    Ellie

    It is a relief! Aw, thanks, but we can't let them cope on their own with all this...

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