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Thread: Apparently I am a f****** idiot

  1. #11
    Forum Member Barry52's Avatar
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    Hi Boiler,

    Just to echo what others have said, I was frustrated and occasionally angry in the early days following diagnosis and it was my best friend who had a breakdown who suggested I take antidepressants. This was sound advice as it helped me to rationalise the problems when living with MND. It can affect our rationale and although I’m not making excuses for your husband’s behaviour maybe you should have the discussion. You may also suggest counselling but if he refuses then maybe you should restrict his assistance. I’m not suggesting you leave him to starve but be less obliging.

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

  2. #12
    Forum Member Boiler68's Avatar
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    Hi all

    Thank you for your messages. My husband will not take anti depressants. I do zone out when he starts and will not make eye contact with him and I don't offer to help him - he has to ask for it. I do the essential stuff and that's it. The difficult part is sussing out whether this is actually MND or not. If I knew for sure it was then I would make allowances but on the other hand, don't want to be a doormat!!
    If he was treating me like this without the MND I would have been long gone!
    Anyway the next clinic appointment is around February time so in advance of that I will ring them to ask for this cognitive test to be done. I lost my bottle last time because I didn't want to throw him under the bus and add to the problems but we cannot go on as we are without some kind of help. It is just me as he will not have strangers in the house and I am absolutely dreading next year when the youngest leaves for uni. She is so worried about the situation but this is not her cross to carry..."for better for worse" and all that..so I've made sure she applies to where she really wants to go and not ones closer to look out for us..

    Boiler x

  3. #13
    Forum Member Terry's Avatar
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    Hi Boiler;

    I do worry for you. Some people write about little things but I don't think you're that type. Whether it is the Mnd or not, you need some praise and for him to show some happiness towards you, otherwise what's the point if he would be just as happy in a nursing home.

    If he is a bit aggressive, then a antidepressant such as Barry is taking could change that and make the difference.

    It's not fair him refusing outside help if you want it. What happens if you brake, in any way.

    Hugs, Terry

  4. #14
    Forum Member Kayleigh's Avatar
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    Hello Boiler,

    The 'in sickness and in health' bit works both ways. You are supporting your husband and he should also be supporting you by giving you emotional support and also by encouraging you to get in any help you may need to ease your workload. Lots of people have cleaners in to do the housework/ironing etc and it is seen as a positive thing to do so that we can have more quality time with family and friends. I know that in future I am going to need help from carers and possibly a cleaner. This will be a necessity rather than being put to me as optional (because the health and wellbeing of my family comes first). I will start off by having help/carers in for a short amount of time so that I can get used to them being in my home and then build up the hours, if necessary.

    After being diagnosed MND, I have had to accept that life is never going to be the same as it was before, but there are things that can be done to help me and my family to make life easier.

    Understandably, the diagnosis of MND can cause anxiety/depression and it is no-one's fault if they suffer from it. My anxiety went through the roof after being diagnosed (not my fault) but it would have been my fault if I had not even considered the options available to treat it. I have found that medication and counselling have been very effective. If Mr Boiler does have anxiety/depression, I hope that he will recognise it is a medical condition that can be treated - and that his and his famiy's life can be much more pleasant if he accepts treatment.

    You must be so proud of your youngest daughter going to University. It is understandable that you will miss her terribly, if she moves away from home. However, Universities have regular long holidays and so it will never be long before she comes home with a big bag of washing and wanting a big hug from her mum!
    Love
    Kayleigh xx
    Last edited by Kayleigh; 13th December 2018 at 17:18.

  5. #15
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    Same Sitution

    Hi Boiler, I have never posted on here before but reading your posts has compelled me to reach out to you. We are in a very similar situation. My husband was diagnosed 16 months ago. He refuses to see anyone in the medical arena as he would like us to look at him healing. He is incredibly angry and speaks to me exactly the same way your husband speaks to you. We have 3 young children who he has also upset and he has pretty much opted out of family life. He believes that he gave everything to the family and now he needs to focus on himself only. I am running a business, looking after the children and trying to support him which is hard when he is so verbally abusive and angry. I have spoken independently to the MND team and they tell me this could be cognitive but we have no way of knowing so I try and separate him from the disease... however... I am now scared of saying the wrong thing all the time that I now barely say anything... Like you I find it mentally exhausting and I struggle between how much I should take but I know if I say something it will just make him angry again. My parents struggle to see him talk to me the way he does and he knows he has isolated himself. I don't know what to do and I am worried about my capacity to stay strong and rise above it. He says that no one knows how he feels and that this is happening to him and not to me... The sad thing is that this is not what it was like before the diagnosis.... I just wanted to say that I know in some ways how hard this is for you. You are doing a great! it may not feel that way but you really are.. try and stay strong... maybe you and your daughter could have a spa day together and work out how to get some additional time to yourself x

  6. #16
    Forum Member Terry's Avatar
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    Hi Believe and welcome to the forum;

    Sorry to hear you're in a similar situation to Boiler is with your husband. I can only say the same to you as I've said to Boiler.

    Best wishes, Terry

    PS:- Please break you're typing up into paragraphs, just to make things easier to read and follow.

  7. #17
    Forum Member Kayleigh's Avatar
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    Hello Believe,

    Welcome to this forum. My heart goes out to you and your family.

    It struck a chord with me when I read in your post that your husband says that 'no-one knows how he feels'. I used to feel like that, but by accepting support available from the wonderful people on this forum and at the MNDA and through counselling, I no longer feel like that.

    I would say to anyone affected by MND who feels alone, you are not alone in the way that you feel or what you are going through. We all go through so many emotions - you are not alone if you are suffering from anxiety or if you have feelings of devastation, anger, frustration, extreme sadness and despair. Sometimes we can feel completely overwhelmed by these feelings and we can also feel lonely and isolated.

    However, by choosing to accept the help and support that is available, we are hopefully able to make the most of every day and have many happy times with loved ones and friends.

    It is never too late to get support from the MNDA or this forum. It is also worth considering counselling, and many hospices offer this.

    The important thing is to know that there is help and support available which can improve the quality of life for you and your loved ones.

    Please believe.... you are not alone.

    Best wishes,
    Kayleigh x
    Last edited by Kayleigh; 17th December 2018 at 02:05.

  8. #18
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    So sorry to read of your situation Believe, it must be very diffiuclt for you and your children. You must feel that you are treading on eggshells x

  9. #19
    Forum Member Boiler68's Avatar
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    Hi Shrew and Believe

    I remember Ellie saying those exact words about treading on eggshells a while ago but that's exactly what's it's like. You have to gauge the mood and time it right before you speak sometimes. All I really want is more happy than sad memories. It is all quiet on the Western Front at the moment; we are looking forward to having all our girls home for Christmas. The last couple of years there's been one missing because of work commitments.

    I'd like to wish all of you on the forum a very Merry Christmas x x
    Boiler

  10. #20
    Hi Boiler and Believe

    I’m truly sorry to read about the awful situations you find yourselves in. So unfair!

    This won’t be of much immediate help to you I’m afraid, but I wanted to let you know of a trial being started by psychiatrists at UCL designed to address this problem of a patient’s acceptance of MND. It’s an adaptation of a talking therapy that has been used successfully for other terminal conditions. The project is called COMMEND. A couple of us on this forum were involved in the early stages.

    At present they are recruiting and training therapists for a feasibility study.

    http://www.ucl.ac.uk/psychiatry/acce...y-motor-neuron

    Doug

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