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Thread: Lost, Angry and Scared

  1. #1
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    Lost, Angry and Scared

    Hi, my Mum was diagnosed with MND last month, I'm currently sat in a log cabin in sunny Yorkshire having heard my lovely Mum cough her way through most of last night. Over the last few months the disease seems to have progressed so much. Mum and I have always been best friends and I feel like this disease is taking her away from me bit by bit. She's constantly exhausted, coughs constantly, her hands and legs are failing and her swallow deteriorating. I laugh and joke around mum and try to make light but I'm screaming inside at the complete unfairness of it all! I'm a Social Worker with Adults as a profession and have seen this diseases affects in my working life but never thought something like this would affect our family, its making it harder to return to work! I'm just so tired, fed up and angry. I just want my old Mum back and for MND to just bog off!

  2. #2
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    Welcome to the forum, remember you are not alone thinking like that.

  3. #3
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    So do we all, so do we all! I am so saddened to hear about mum . Has she got bulbar onset, like me? Did she get diagnosed in sheffield because, if she did, they will inaugurate a care package involving the local nhs neurological outreach team and she can begin to build the medical professionals around her.

    I have a lovely daughter who is exceptionally close to me. Sadly, she lives 200 miles away which is just dreadful. I know she Is heartbroken too.

    You will find, and mum will too if she joins us here on the forum, much help and assistance. I, for one, could not get on without the friendships
    the advice, the tips and techniques and, yes, the inspiration and positivity that emanates from all the brave souls who have mnd or are living alongside us. So keep in touch with us all. Joycie
    Last edited by willsandco; 25th March 2015 at 11:24.

  4. #4
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    Thank you Joycie and Trevor, your words really help. Joycie- my Mum has limb onset MND. It started in her hands and was misdiagnosed as carpel tunnel. She started with chest infections at Christmas time and since then has deteriorated quickly. I'd say that her swallowing and speech symptoms have now over taken her limb problems. We had no idea it could be MND really as no one had put her symptoms together and were treating them as all separate issues. I had put all her symptoms into a search engine around the end of January and MND had come up as a result. It was like reading about my mum but I convinced myself I was being stupid and paranoid and put the thought to the back of my mind. We live in the midlands and the doctors and support have been fantastic but mum is always so exhausted she doesn't always take it all in what professionals say to her, I've been there all along as the 'ears' and I'm so worried about when I return to work.
    My Mum and I are on holiday in Yorkshire at the moment, a holiday we had booked before her diagnosis. I can't help but this is going to be the last hol mum and I have together. She sleeps loads and is constantly exhausted. I managed to push her in her wheelchair along bridlington seafront today but she was that tired afterwards that she fell asleep in her tea tonight. My mum is fast asleep now and I'm sat in my room alone having a good cry! I'm absolutely exhausted myself dealing with the practicalities of caring for mum whilst away from home as well as these emotions and sadness. All I wanted was a nice break away and MND won't even allow us that. I'm so low tonight :-( thank you for being there everyone x

  5. #5
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    Oh Freesia, I feel I want to put my arms around you and give you a hug. I really feel for you, my husband is waiting on a confirmed diagnosis, I feel so helpless but he like your mom know that we love them and whatever life throws at us we will always be there for them. Keep strong and keep in touch there are so many good people on here with invaluable advice. Pam Sx

  6. #6
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    freesia, has she got anyone at home with her or are you her main carer? The trouble is with mnd is that it gets worse and you require more and more care as time goes on. If she has no one you will have to think about getting care in eventually but I reckon you know that already. It is an awful place to be seeing your loved ones deteriorate and I am so sorry. Love. Joycie xx

  7. #7
    Forum Member Terry's Avatar
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    Hi Freesia;

    Reading your bit about having a good cry bought tears to my eyes. Sorry to hear about your mum but I would like to welcome you to the forum. It's so hard dealing with some of us away from home that I have not been on holiday for a few years.

    Best wishes, Terry

  8. #8
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    Hi Freesia,
    I to was saddened to read your post. Please don't be alone, talk to us and ask any questions. I am also a Carer, so I understand how difficult it is to watch your loved one waste away. Your head must be in turmoil. Pleased you have found us though.

    Sending a Hug. Springtime x
    Evil triumphs when good men stand by and do nothing.

  9. #9
    Forum Member Davec's Avatar
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    Hi Freesia
    I like all the others was affected by your post
    This forum helped me so much, and I hope we can help,you by being here when needed
    Hugs xx

  10. #10
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    Oh Dear, so sorry for the tears
    Please let this forum help as there is great support here.

    Kelvin

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