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Thread: How do other carers cope....?

  1. #21
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    Hi
    I too am going through this with my hubby ,he is so angry all the time (understandably) but seems to take it out on me.....he expects me to do everything says he will kill himself if I get carers in to help ....he is very dependent on me now and can hardly talk anymore but I feel he doesn't appreciate anything I do even though we have 2 teenagers I run about after and also run a , business ...he only ever tells me what I'm doing wrong and looks at me as if he hates me sometimes....he will not take anti depressants and says it's me who is the problem and I stress him out ...I don't know him anymore and the number of times I could have walked out !!! but I try and think of the happy times we had before he got this horrible disease ....he has had it 5 years now and the stress is unbearable sometimes ...just could just jump on a plane sometimes and never come back!!!!
    Last edited by Betterch; 25th July 2013 at 19:58.

  2. #22
    Forum Member john's Avatar
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    Hi Betterch,

    I cared for my wife for two years of this illness. She took anti depressants from the outset which were gradually increased over the course of her illness. Even so she had her bad days when as you say nothing went right for her. We gradually introduced carers who did little initially but their role increased as I rene became used to them and accepted how life with them became easier for all of us. The ladies we had were marvellous and became friends and very much a part of the family. A man is possibly different as adjusting to a lady showering you is tricky but a man doing it is even less appealing. Not accepting help leaves you with an impossible mountain to climb. If you cannot persuade him is there no one who he respects and will listen to. A doctor or long term care nurse or physiotherapist.
    If there is no one who fits into these categories I suggest you ring mnda connect and see if they can suggest a way forward. The status quo is not really an option unless you want both of you ill.

    John

  3. #23
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    Think you are having to put up with too much Betterch. I do not know how I would manage without carers and I have no children to look after. Can you get support from people your husband will listen to? Someone to explain that your health snd well being are critical to his future care.i live not too far from you if you need an escape!

    Magic

  4. #24
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    I have spoken to him today and has agreed to look at carers to shower him and get him to bed .....our occupational therapist is coming next week and I have already pre warned her on the phone how I am struggling .....hopefully soon I will get a bit of time for me which seems very selfish when he has a terminal illness but I din t feel he is getting the best from me in the current situation we are living in ....thanks for the comments they have made me feel less guilty about my feelings x

  5. #25
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    Sounds like you have started to move things in the right direction.

    Magic

  6. #26
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    When things settle down and they will, you must speak to a MNDA visitor who will advise and help you. My wife is my carer, I am 4 years into this monster disease, and I know how difficult it is to be a carer. I applied to my local authority for a carer grant and it's for my wife to use on herself, she has had a night in a spa and has money left for another spoil.

    Good luck

    Michael

  7. #27
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    A night in a spa sounds lovely and my eldest daughter bought me a voucher for one at Xmas and its here in my drawer because I can never get out to use it .....I am going to try to get out somewhere once a week with my kids because my hubby doesn't feel well enough to go anywhere a lot of the time and sleeps slot problem is he wants me there even when he is sleeping .....I love him so much and it is awful to see this once fit footballer with a real zest for life become this sad depressed angry person who doesn't want to be here any more :-(

  8. #28
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    Hi Better

    Such a sad situation, one that I hope does getter better for you. Remember, if you don't take care of yourself, how can you possibly take care of him? Sounds like his insecurities as well as this illness has gotten the best of him. Maybe bring in a therapist that you both can speak with individually and together, it might help him to understand you can't do it alone. All the best to you.

    CC
    .

  9. #29
    Forum Member pete's Avatar
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    Hi all,
    Its a very difficult time for everyone concerned ,living with a loved one who is suffering the never ending challenge that is MND, but as a patient and not a carer I think sometimes we need to be told in no uncertain terms when things are just not acceptable ,not only having care for someone who is no longer able to do the things we once never had a second thought about ,but this disease changes just about everything and no one is to blame and it's not anyone right to demand that everyone has to change their lives just because one has been unlucky enough to become ill, the day to day grind is tough for all and it's unreasonable and downright wrong to be miserable, aggressive and generally unpleasant to those who you rely on . We clear the air often when the wife says I need to look in the mirror ,she is right works for me ,I see a grumpy sixty year old bloke who can just stand up, can't talk, eats like a child, and dribbles for England , my thoughts are why on earth does she put up with this ,the answer is simple she is a far better person than I have the right to have looking after me ,not sure if the roles where reversed if I would be able to cope as my family does, so a few home truths would not be out of place,and you getting ill will impact on your husband ,so my advice is you get out and about as much as you can and live your life ,enjoy doing things you want too and don't ever feel guilty for something you have no control over ,we all have to make decisions and not all are popular but are needed to be made for the good of all and not one . I wish you luck and hope he sees just how lucky he is compared to some who face this on their own .
    Regards
    Pete
    All I need is a miracle

  10. #30
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    Hi Better, I agree with pete . He sums it up nicely. For us my dad did not want any carers comin in for our mum. He knew we were all there and he was ill too, caring for his blind mother also. We all had young children too. BUT when things started to become intense we knew what we had to do. For your mental and physical health you will need to put your foot down and explain things to him. When you are constantly grinded down - life on top becomes more of a challenge. I f you look after yourself you are not being selfish at all; you are just reminding yourself and others that besides a dutiful wife you are also a human being who needs to be 'tended too' as well. Good luck noor x x x

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