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Thread: Fantastic Mum has MND - what next?

  1. #1

    Fantastic Mum has MND - what next?

    Mum (61) has a new diagnosis of MND but we suspect it's lurked for a while. Speech started to slur in the summer. She's finally started to let me help. Hands seem ok; legs worse (getting up stairs starting to be difficult). Doctor INCREDIBLE and did a random home visit to see how she was. There is nobody else in the world who can look after her (no family or friends other than me), and her biggest worry is that I'll be "lumbered" with her, when I have a v demanding job two hours away. Thankfully (in a way) this means social care and/or NHS etc are forced to act in a more dramatic way than otherwise.

    Has anybody got any expertise/experience with how it all works? Referral has been made to adult social care - doctor also hurrying things up. Looking at assisted living closer to where I live. In the meantime before this can start, he's actioning the MND nurse team etc. She's living in social housing and has no assets, and is on sick pay from work at the moment but this will eventually end (thinking in 3 months or so). Anyone up with the knowledge as to any grants or help she can get?

    I've seen citizens advice, Age UK etc. Basically want to get her moved closer to me but she won't do a housing association transfer closer in case social care turn around and go, "you live near your daughter now, she can care for you" etc -- she wants to avoid that 100%, and so does her GP who like I say is hurrying through a hospice referral. Does anyone have any experience of a similar situation?

    And also - - how should I be? At the moment I have confined my frustrated misery to moments alone with my boyfriend. I find it quite easy to be normal with Mum about my days at work etc cos that's how we always are. Should I continue just being normal? I don't want to stifle her.

    And finally -- has anybody gone abroad to enjoy the snow and scenery of the Swiss Alps in the final stages of their life? I'd welcome any experiences people have had.

    Cheers. MilesTils

  2. #2
    Forum Member Dude's Avatar
    Join Date
    May 2015
    Miles So sorry about mum's diagnosis. Stairs need to have handrail both sides to give mum confidence and save falls. 'Lumbered' is a feeling we all have at some point. Does council have any tailor made bungalows, long shot, but ask the question. It's a new challenge for Mum, you and your fella. Final stages of life ?, why is someone dying ?. I'm on my seventh or eighth Christmas with mnd pbp like mum.
    You sound like a very strong person, you'll be fine. Dude xx

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Miles and welcome to the forum;

    Sorry to hear about your mum. Alot depends on how your mum is at the moment and what finances she has.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hello MilesTils and welcome to the forum. I'm sorry to hear of your mum's diagnosis and I suggest you carry on in your usual relationship with her, although you may be called upon to assist her with tasks as the disease progresses.

    There is a lot of advice on finances under that thread on the main forum page. If you have specific questions please ask and my experience suggests someone will quickly answer.

    Best wishes
    Iím going to do this even if it kills me!

  5. #5
    Forum Member
    Join Date
    Mar 2014
    Why don't you give MND connect a ring and talk it through with them? . They are an incredible source of specialist advice.
    My vote would be to get her moved nearer to you and then you can build up all your local NHS and hospice orofessionals. You need to be near here. If so, you need to get the wheels into motion sooner rather than later

    You really haven't got to listen to any prognoses about life expectancy Everyone iis individual; everyone has their own journey. It can trundle on for a while, or turn aggressive on a sixpence. No one knows. I find you have to just get up in the morning and just get on with the day! We are not unhappy here - we just live alongside it! Wish life had panned out differently but it hasn't so we are just adapting and evolving!

    I hope you and mum get it sorted out

    Please let us know how everything goes with mum. She can always join us here on the forum and get to know us all
    We are a great source of useful tips, advice, guidance - and a hefty helping of inspiration,

    Much love

    Joycie X

  6. #6
    Forum Member
    Join Date
    May 2014

    Get your GP to complete the DS1500 form as this will fast track benefits such as the PIP and anything else Mum is entitled to. Its really important to get this type of stuff rolling ASAP as some have had to wait a very long time. Apply for a blue badge, it helps when having to get to appointments or even just a day out to the park. All the great advice about MND Connect etc already given to you and they do help so ring them up. Not sure what part of the country you are in but the MND clinical teams have the OT - Occupational Therapist, SALT - Speech and language therapist, dietician, district nurse and Macmillan nurse all working together where I am (Cambs) and I would not have survived without them. My OT is amazing and cannot stop thanking her as I don't qualify for much if it's means tested but the MNDA have helped me with several things which I am grateful for.
    I work full time, a demanding role on average 10 hour days. I get up at 4am and it drains me but my hubby is amazing and has been a wonderful hubby to me all our married life, it's my privilege to do all I can for him, even the not so nice stuff is easier for me now. In less than 18 months he has gone from having a slight limp to not being able to walk or talk, cannot breath on his own when laying down and has drenching saliva fits that he has to use a suction pump to clear it and wears Hyacine patches to try to stem the flow. His neck is now starting to droop. He refused to be fed by a tube but his swallow still allows softish foods and he now has fortified drinks thanks to advice from Dude on here So many people help me on here they are all cool people. I spend this time of night researching forums to get an idea of what can help with the new challenges that present almost daily. House wise I now have a shower pod and special loo in my lounge dining room with a hoist, a motorised wheelchair, shower chair, hospital bed and we are waiting delivery of a WAV vehicle so I can take him to visit his parents who are now both sick too. There is nothing nice about this disease but there is no other option but to suck it up and get on with it. I've cried rivers to mourn our lost lives and the uselessness of my ability to fix this but when I dry my tears nothing has changed so I skip the crying bit as much as I can now.
    Ask any questions everyone is lovely here and always helpful.
    Take care of you too and keep talking to help you with the roller coaster of emotions you've yet to face.

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