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  • denise
    replied
    Hi puddy
    I'm so sorry to hear your news. I honestly can't think of the right words to say.
    love and hugs
    Denise xx

    Leave a comment:


  • Barry52
    replied
    Please accept my condolences Puddy. Nigel is finally released from this dreadful disease and in time you will look back on happier times together.

    Barry

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  • Bowler
    replied
    Puddy we haven’t chatted on here but as fellow carer I want to send you my sincere condolences on Nigels passing. It will have been a great comfort to him to have you by his side every step of his journey especially at the end.

    Sending you a hug

    Phil

    Leave a comment:


  • Ellie
    replied
    Oh Puddy, I'm so sorry to hear your sad news - heartfelt condolences to you.

    I'm glad you were with Nigel when he died and hope you have some support there, knowing that people cannot easily travel to Spain right now.

    RIP Nigel.

    Love Ellie.

    Leave a comment:


  • Puddy
    replied
    It's with a broken heart I have to tell you that Nigel passed away in hospital on 12th August. I was with him when he passed. It had got to the point where he couldn't swallow, eat or speak. Even drinking was extdremely difficult. One afternoon he said he couldn't get his breath so I called an ambulance. He had pneumonia and passed away two days later. I'm grief'stricken and hate how he suffered.

    Leave a comment:


  • Boden1986
    replied
    Hi Puddy,

    I understand how you feel, my dad was diagnosed in January of this year to our surprise and he has deteriorated so fast. My mum and I are really struggling with how to cope. I think it effects every person differently and that's the difficult part as there are no answers. We really aren't sure now how long dad will be with us for but everyone is right we have to try and make memories. I really do send lots of love xxxx

    Leave a comment:


  • denise
    replied
    hey everyone
    its so nice to know you are all there. it is dreadful to watch all this going on and feel so useless. since my husbands diagnosis last year i think it is all i have thought about. the stupid thing is i dont even really know how to talk about it with him. its like the elephant in the room. he has just refused to have a peg fitted. its like i dont know if i should be encouraging to live or what - does that sound dreadful? i was trying to protect him from the virus and he looks at me as if to say well does it matter! i feel as though i am being put through the wringer every day.
    hugs and kisses to everyone

    Leave a comment:


  • Puddy
    replied
    Thanks everyone. I'm sorry we're all going through this. I, too, think a lot of the future and what will happen.

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  • Jo jo
    replied
    I feel your pain. What a horrible horrible illness. Everyday gets harder watching the person you love slowly getting worse. I am not the same person i was 8 months ago. My heart goes out to everyone who is going through this. Reading the posts on this forum helps me so much as I don’t feel so alone. Love to you all. Xx

    Leave a comment:


  • Samanth
    replied
    Dear Puddy,
    I completely understand what you are going through as I’m going through it too. My husband was diagnosed in May last year. He currently has little limb movement, using only 1 finger. At the minute his speech and swallow are starting to decline.

    To enable us to get extra help we have had to move into my parents and I have had to leave my job and my friends.

    Dealing with psychological toll of the disease on both of us has been awful. I try to cheer him up as much as possible. However inside Iv crumbled. I just can’t stop thinking about the future and feel very alone.

    Leave a comment:


  • Deb
    replied
    Hi Puddy,

    I am so sorry that Nigel's progression has been so swift. I am not a carer but I appreciate how utterly heartbreaking it must be to see your husband struggling. It's good you are able to laugh together so keep doing this whenever you can.

    Take Care of yourself too and stay safe,
    Love Debbie x

    Leave a comment:


  • Doug Carpenter
    replied
    Thanks for posting Puddy.

    I was beginning to fear the Forum itself had gone into lockdown!

    Thinking of you both.

    Doug

    Leave a comment:


  • Puddy
    replied
    Thank you both. We have good and bad days and we do manage to laugh. What with this virus thing, our lives have changed forever.

    Leave a comment:


  • Broostine93
    replied
    Hi Puddy,

    It's been a while since I've been on the forum due to my caring role coming to an end in February of this year. Firstly, you've absolutely done the right thing by talking to professional counsellors- keep doing this, as it will help you get through each 'stage' as your husband progresses.
    With regard to his cries of despair, you could try the following:

    - Distraction techniques: i.e. watch films together, listen to music, listen to an audiobook together or go through old photo albums. If he can get into a garden, definitely spend as much time there with him as possible- it's a proven fact that being outside alleviates a poor mood/mental state.
    - See if he wants to talk to a counsellor, in the same way that you are. It will help him immensely if he is struggling to cope.

    I think, being on the other side of this, we can tend to 'put on a happy face' for our loved one- sometimes, that's a good thing (in my case, if ever I broke down in front of my relative, she would start crying because she'd feel guilty about having to rely on me so much- this made our relationship very strained, over time). You know your husband best, so you should have a pretty accurate understanding of how he'd react if you 'took off the mask' in front of him- if he's the sort that would find solace in solidarity, absolutely talk through how you feel about it all and have a good cry together- it can be incredibly healing and an excellent bonding experience to know that you're both in it together.

    It's a long, hard road to travel and it's incredibly unfair- be kind to yourself, be kind to your husband and focus on the memories you want to make together- I don't think there are many people on this forum who haven't had some kind of happy and lasting memory made since they or their loved one was diagnosed

    Try to find one positive out of every day- you'll be amazed at how easily you can turn it into a habit

    Leave a comment:


  • nunhead_man
    replied
    Good evening Puddy

    As you know I'm coming into this carers matter from the side of somebody who suffers from MND.

    I was swearing about this disease yesterday in the presence of my daughter who helps with my care although the amount of care I need at the moment is quite limited. She was getting quite upset, because, as it turned out this was reminding her of where I was going and asked me not to get angry when she was around if I could and talk to somebody else about it.

    So in relation to your challenge, I'm not quite sure what to suggest other than finding your husband someone else to talk to who understands MND and can comfort him in some way.

    Leave a comment:

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