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Thread: Newly diagnosed, won't accept any help...

  1. #1

    Newly diagnosed, won't accept any help...


    My mother in law was recently diagnosed with MND and I'm joining this forum for the benefit of her son, my husband.

    My MIL is immobile, barely able to bear leg weight any longer and has lost use of her arms and hands. She has full speech and as yet, there are no issues with eating (other than having to be spoon-fed). She has gone from fully mobile to her current condition in 8-9 short months. She's 69.

    Her husband has a series of health issues of his own and should not be exerting himself - yet he cares for her pretty much 24/7 with the support of a community carer who calls only 3 days a week.

    Our issue is that she won't accept any help. All she has at the moment is a hospital bed, a chair to help her up and down and a wheelchair that is not suited to her needs. She resolutely refuses to move up to a 7 day care package - which she very clearly needs given her husband's ill health. When he gets ill, I don't know what happens next.

    My husband is an only child and is naturally devastated by his Mum's diagnosis. He is however trying to line up as much as possible to support her and his stepfather but everything he's bringing forward is being rejected.

    So far his Mum has refused to accept a 7 day care package, she has refused a ramp, a wet-room, help to get to medical appointments, help with food, help to allow her to read books and a personal alarm (she can't use phones so what do we do if her husband takes ill??). She doesn't want any strangers in her house (therefore ruling out any further support from the likes of the MND association) and as of today, doesn't want to have to travel to a different hospital for medical appointments (we think the crux of that issue is that her husband can no longer manage to get her in and out of the car). Neither she or her husband will follow up on benefits they are entitled to either.

    How do we move on from this? My husband is stressed and distressed. He feels he's not doing enough for his Mum but every time he tries to help he's getting pushed away. HIs Mum is calling all the shots (I imagine she feels this is the only control she has left). His Stepfather is a lovely, lovely man but just hasn't got the strength of character to admit that he could do with more help and that his Mum could absolutely benefit from it.

    I should add that the MND nurse left them today very much of the impression that my MIL's current circumstances are unsafe - we don't know what that now means in terms of future reviews / interventions.

    Do we step back to any such times that an emergency inevitably occurs? This is breaking my husband's heart and we are on constant eggshells waiting for a call with some disastrous news.

    Sorry for the big long ramble, we feel lost, frustrated and upset. I can't begin to imagine what my MIL is going through but her condition has deteriorated so quickly in the last 6-9 months that we need to make sure we are looking after both her and her husband going forward.

    Any wisdom is welcome, god knows we need it!

  2. #2
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Nixx & welcome,

    Phew what a situation! Was your MIL this stubborn before ALS/MND? It could be she's not in control of her health so she's rebelling in what ways she can, she could be in denial or there is a chance her behaviour is affected. Either way, her refusal to accept any help will cause more and more problems, with possibly bad outcomes.

    Did the MND Nurse get through to her? Often advice from family members is not accepted and there can be a bit of emotional blackmail bandied about. Can her GP, Nurse get involved? Can the MND Nurse visit again and/or liaise with GP?

    If she continues refusing help, her husband won't physically be able to cope. My thoughts are with you.

    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Hi Ellie,

    Thanks for the welcome and for the reply, it's appreciated. Yes, this lady is incredibly stubborn.

    I think she's in an element of denial, along with trying to control the few things she has control over (including her husband I'm sorry to say).

    The MND nurse, which my husband organised and accompanied, couldn't make her see that everything being offered is there to support her and her husband. She won't allow my husband to speak to her GP (or anyone) on her behalf - is this something the MND nurse can override? She said she was going to follow up with the OT at least.

    I just wonder what the MND nurses report will trigger now she's concluded that her current circumstances are unsafe?

    I would be happy to do the hard talking with both my mother and father in law but my husband doesn't want me to in case they tell me to butt out. I personally think I'm better placed as I'm not as close. There is literally no one else to do it. If anything happens, we will be the first people who are called so surely they should be working with us?

    It's a really desperate situation.

  4. #4
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Nixx and welcome to the forum;

    Sorry to hear of your mother in law's diagnoses and especially her stubbornness.

    There is someone else here that has a similar experience but the couple that are affected are a bit younger.

    It is always good to look after the carer as if they get injured or hospitalized there can be no one that knows what to do etc. I think that Mil can choose what care she wants and unless she is committed or someone else has power of alterney over her treatment.

    Others don't have to go along with what she wants so her husband could say it's all too much.

    I think that if you can talk quietly and calmly to them both, then you should. Try to not get aggravated and tell them that you are only doing this because you are worried and care for them both and love them both. You do not choose to do it because it's an easy option.

    You might not get anywhere or might just sow a seed that will bring her around. It's better to try and know that you have.

    Give Mnda connect a ring, it's what they are here for.

    Wish you plenty of luck.

    Love 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.

  5. #5
    Welcome Nixx

    Sorry to hear of your mil diagnosis as well as her state of mind over the situation. You have definitely come to the right place for great advice and support by those that truly know, and understand.

    My own dear friend is a little over fours years into this illness and also refuses anything, and almost everything that can help benefit her for better, and safer quality of living.

    She too no longer has mobility, but refuses the custom made power chair, she no longer has understandable speech, but refuses a speech aide, no home health aides have been brought in to help with care it all remains on her partner because she would not allow outside care. She has refused to return to the ALS team, and has not been seen by a doctor in two years.

    She lives in a state of denial combined with uncreditable stubbornness.

    It is extremely difficult, upsetting, and frustrating to say the least for those that love her to watch helplessly the choices she makes, especially knowing there is a better way to live, and manage this illness, but ultimately all these choices are hers to make.

    I wish I had the answers you seek, but we too are struggling to provide the needed help, and assistance my dear friend requires at this time, and find her refusal of all things also one of the bigger challenges in all this.

    As they can lead a horse to water, but can't make him drink.

    All the best to you, your husband. and his family, and do hope your mil will come to accept the help she needs sooner then later.


  6. #6
    Hello Nixx, what a difficult position you find yourselves in. In a way I can understand why your mother in law is clinging on to, in her mind, the last vestiges of independence and dignity. I've been there and I too was very stubborn . Maybe you will have to be cruel to be kind and someone professional may have to speak on behalf of your father in law and just say that he can no longer provide this level of care on Health grounds. Maybe if you could just introduce one element of outside care at a time you could break down those barriers and she could come to some sort of acceptance. If not I can see that you will reach some crisis point which may necessitate a hospital admission which is the last thing that she needs. I had to have a good talk to myself as I found the whole scenario really difficult to accept but I knew that if I didn't I would not be able to stay at home and would land up in a residential home. without sounding threatening I wonder if this could gently be put to her as an alternative just to give her a reality check

  7. #7
    Thanks everyone for taking the time to reply.

    We've had one small triumph today - MIL has finally accepted that she needs to have the personal alarm so we're working now to get that set up. Small steps!

    Her husband will never admit that he can't cope, he downplays everything and we've already had the conversation about her ending up in a care facility should anything happen to him. They are terrible at taking decisions at the best of times so we can only hope that they will eventually see sense before something awful happens. They are clear on our feelings and thoughts about everything.

    I think we'll need to take the softly, softly approach for the next few weeks. MIL keeps stating that she's in full control of everything (bar her obvious restrictions) but that feels almost like a defensive position while she tries to come to terms with things and I get that.

    We're waiting to hear back from the MND Nurse now, I don't know how MIL's behaviour yesterday will influence what happens next but what's done is done. The Regional MND advisor will also come on board soon too so hopefully they can get through to her better than us!

    You are all wonderful people and I'm glad to have found you, thank you again.

  8. #8
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Nixx;

    It's good that you have managed to get a call alarm agreed. You can get automatic ones that you don't have to press and it detects a fall.

    Hopefully dad understands that he needs more help before he puts his back out or something else. Don't know how your mum washes and gets to the loo etc but there are mobile hoists and loos that wash and dry your bum. Hopefully the OT will sort. They might be able to use a temporary ramp.

    Love 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.

  9. #9
    Hi Nixx .. sent you a private message with my email address .. Co.Down here N.I.

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