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Thread: Not sure how to handle wife's crying

  1. #1
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    Not sure how to handle wife's crying

    Sorry not been on for a while,wife, Mary was diagnosed in October 2017, her speech is now virtually incomprehensible and she writes everything down, although she does have an app on her tablet to help her.
    Her speech, as I've said is very difficult to decipher, she had a peg in in January, which I clean and flush, although as yet I haven't the confidence to push the tube in and out of her stomach, District nurses are due to help with that for the time being.
    She has lost strength in her hands and finds it very difficult,her fingers are now all gnarled, she cries a lot and suffers mood swings. She has trouble getting in and out of the shower, our shower is connected to the bath taps, and sometimes wobbles going up and down stairs, I worry constantly that she will hurt herself whilst I'm at work, the neighbours have my mobile number to contact me if anything happens.
    all that I can handle at the present moment, but I'm not sure how to react to her crying all the time , sometimes when I hug her and tell her I love her and I'm going nowhere she just pushes me away, other times she hugs me back and the crying gets worse. I want to cry as well but I'm still suppressing the tears, I know I should let it all out but it's easier said than done
    Any advice would be most welcome
    Tim

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    Hi Tim,

    It's a hard situation to be in.
    Has the OT been to see you? It sounds like your wife needs a stair lift or through floor lift.
    Also, I struggled with a shower over the bath and it was very scary. A wetroom might be the answer.
    I know these are purely practical solutions and I know MND connect will point you in the right direction.
    Take care,

    Bern

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    Thank you Bern
    I think the CNS has spoken to west Berkshire council to come out and review the situation, we only have one hand rail going up the stairs too, so maybe they could do something there as well, all a worry though especially when she is on her own

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    Forum Member Barry52's Avatar
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    Hi Tim,

    The crying and mood swings is part of the disease symptoms and can be safely controlled with antidepressants prescribed by a GP. The description of the condition is emotional lability and I control it with citalopram. 2 stair rails are a must have and as Bern mentioned an OT will assess the safety issues in your home.

    Best wishes,
    Barry
    Life is a journey, not a destination.

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    thank you Barry
    wife only diagnosed in October and everything seems to have gone at an helter skelter pace, what with hospital appointments, doctors, cns , dietician, salt,, ect
    she has been given some drops to take ( citalopram ), she also takes carbocistine and patches for her phlegm and drooling, and some other stuff called riluzole
    she has lately been having trouble with swallowing solids, so drinks ensure, supplied by the abbot hospital, who also supply other things like syringes ect, everyone has been really helpful.
    a lot of the time i just feel helpless and although the supports there i cant stop worrying about her when at work ( been very good so far, but i wonder how long the goodwill will last )

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    Forum Member Streetwise's Avatar
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    my mam said she didn't want to cry she just couldn't control it ,sometimes she might laugh ,emotional lability doesn't just happen in motor neurone disease it can happen when you're extremely tired as well.
    citalopram is a very mild antidepressant ,if you can ask her see if she thinks it works well enough ,the problem is it's only really made for a few months! so she may have to change onto something else.

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    thanks streetwise, she laughs occasionally but its mainly tears and she was only recently given the citlopram so maybe it needs time to kick in properly

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    Forum Member MNDConnect's Avatar
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    Hi Tim,

    Have you mentioned the crying and mood swings to your wifes GP? They would be able to explore the cause for the emotions further and look into different medications to try to help manage these emotions. They may also be able to refer her to a local counsellor. We have an information sheet which explains about how someone's emotions may be affected by a diagnosis of MND, to access this please click here

    I am glad to see that the CSN has made a referral to the local council to come out and do an assessment. It is really important that they are involved as they can look at your home and make recommendations about adaptations and equipment to ensure that it is safe for your wife. If you find that this referral takes a long time then please do let us know and we would be able to chase this for you.

    Also, when your wife does see an Occupational Therapist (OT) it would be good to ask them about call alarm systems. This may help whilst you are at work as she could then make contact with you if there were any problems.

    If you would like to discuss any of this in more depth then please do not hesitate to call us on 0808 802 6262. Our helpline is open Monday to Friday 9am to 5pm and 7pm to 10.30pm.

    Best Wishes,

    Adele

  9. #9
    Forum Member Terry's Avatar
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    Hi Tim

    Like around a quarter of us suffer from Emotional Liability, I have problems with people being kind, sorry and loving, so your wife could well be similar. So hugging her, etc might well make her worse, but don't stop doing it. You might be able to make her laugh by being sarcastically nasty in a nice way, just blame me.

    I found that that drug made a difference in a few days.

    Like Mnda said, get some form of panic system, you can get some that will detect falls and raise the alarm automatically, and the company will ring you and others if you don't answer.

    It would be good if your wife stayed down stairs if there’s no one with her.

    The feeding tube takes a bit of getting used to but try not to worry about pushing it in a inch or turning it. Once it has been in a couple of months you should be able to pull it etc.

    Does she have a RIG feeding tube, if so the balloon water should be changed weekly and that is best done by pushing it in a bit. There should be a specialist nurse that does it a couple of times to show you.

    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.

  10. #10
    Forum Member Ellie's Avatar
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    Hi Tim,

    You've both got a lot going on, I'm sorry. I understand where you're both coming from.

    If Mary is like I was, she is undoubtedly feeling terrified, scared, angry, guilty and hopeless at this early stage post-diagnosis. As well as a possible PBA (PseudoBulbar Affect) which exaggerates emotions - known as Emotional Lability, or (my favourite) Emotional Incontinence, Mary is trying to come to terms with her condition, prognosis and all it entails. Emotional Lability is a neurological condition, it's not due to tiredness.

    Pushing you away is a self-defence mechanism -"if I alienate him, he won't love me, so he won't miss me when I die" - and most of us have done it at some stage in our post-diagnosis life. It's wrong of course, but seems rational at the time!

    You're right to say the antidepressant will take time to work. I had 1-1 counselling and that, for me, was excellent.

    And, don't forget to look after yourself Tim. Your physical and emotional well-being are equally important. It's good that you go out to work, albeit stressful atm worrying about what's happening at home. By Mary's stage, I had carers coming in and out during the day. I think Adele's advice is good.

    And, don't worry about the feeding tube. Confidence with it will come with time and, if it doesn't, the nurses will do it. But it will - it is hard to get it wrong or to cause pain with it.

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

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