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Thread: Aftermath

  1. #11
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    Bern, Just read your reply and add you to the lovely people I have mentioned who have so thoughtfully given me words of comfort and support.
    Peter x p.s. Don't forget to share yours.
    Last edited by lost soul !; 12th August 2017 at 19:30. Reason: Did not mention Berns name

  2. #12
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    I have gone on the thread aftermath, like Susan x

  3. #13
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    My husband had ALS for 3 years and we were told it's possible he had it for 18 months previous he has now passed bless him, I found MND support useless, I did relent and have care help so I could work for a bit as needed the break and yes some good and some not and they came when they felt like it!! I found the hospice were our main support and far more understanding and when he took a bad turn and we thought the worse they took him in but he bounced back as he was a fighter but his care needs meant he couldn't return home and we had to find a home to care for him which was very distressing as there was hardly any help or support bar here's a list of you go and sort!!!
    CHC were rude and basically told me as my husband didn't have a death date they would not help eventually after a lot of arguing with social services we had help and I found a lovely home for my husband he was only there 6 weeks before he died which was upsetting as I tried desperately for him to stay in the hospice but he out stayed his welcome by 4 weeks, if your reading this you can gauge my feelings on this cruel vicious disease.........

  4. #14
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    You did all you could, in probably the most complex and traumatic time. I pray you find peace with yourself and can walk tall knowing in your heart your man how hard it was for you both, He knew and loved for who you are, a person who should have never suffered the effects on you, seeing your man suffer from this cruel viscous disease, ( your words and mine )
    Try try to now live your life as he would want !! Keep in touch it helps.
    Peter x & one from your man x

  5. #15
    Forum Member Streetwise's Avatar
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    I got no help whatsoever,I think because I'm autistic I'm just not liked ,i'm always let down,I never seem to learn.
    I was criticised by a member on this forum ,the very recent members Were alright so I don't login to this forum very much now
    i'd say if youre autistic and a carer or ex carer dont become a member, being critiscised because of comprehension is cruel .
    Last edited by Streetwise; 4th January 2018 at 17:13.

  6. #16
    Forum Member Streetwise's Avatar
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    Quote Originally Posted by Streetwise View Post
    I got no help whatsoever,I think because I'm autistic I'm just not liked ,i'm always let down,I never seem to learn.
    I was criticised by a member on this forum ,the very recent members Were alright so I don't login to this forum very much now
    i'd say if youre autistic and a carer or ex carer dont become a member, being critiscised because of comprehension is cruel .
    ah i was right nobody gives a damn

  7. #17
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    Dear Streetwise
    You are wrong to think that no-one cares. It is obvious that you have had a very difficult time. Losing your mum is hard whatever the circumstances and, on top of that, you have had to deal with your diagnosis. You seem both sad, hurt and angry all of which are symptoms of grief.
    However the forum is mainly for those who are living with MND either themselves or as carers. They need to feel love, support and hope, particularly hope for those who are left after the person afflicted has died. My local hospice offers bereavement support but only for 12 months because after that time they expect to have helped people to deal with their distress and move on.
    II might be worth speaking to your GP and seeing if there is something they can offer you. Unresolved grief can surface years later and cause many problems. I am sure your mum would have wanted you to be happy now. It is the best way to keep her love and memory alive.
    Take care of yourself.

  8. #18
    Forum Member Streetwise's Avatar
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    that is your opinion and you are entitled to it I know I am right

  9. #19
    Forum Member Dude's Avatar
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    Hi Streetwise. I have had a few disagreements with members over the years, but it's always blown over. You never really know if a member is having a good or bad day, so sometimes we have a little rant. Correct me if I am wrong, but one of the bad things about autism is shear frustration, this also comes with mnd, as you know. Don't take it to heart, we all love you. Dude x

  10. #20
    Forum Member Streetwise's Avatar
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    thanks- it's just hard when I know I have a developmental disorder and somebody criticises me because I don't understand how to do comprehension.
    you might be able to understand this because im using speech to text ,if I wasn't you probably be confused ,I cannot understand English comprehension .

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