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Thread: Things moving too fast

  1. #1
    Forum Member Katrina36's Avatar
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    Things moving too fast

    Hi all.. I can't sleep as usual.. I spoke with dads mnd team today and was told he needs OT to come out to have changes made to bathroom being changed to a wet room, doors need to be widened,, bedroom ( needs to have a hand rail as he is struggling to pull up out off bed now), even mention of hospital bed, hoist, wheelchair etc,, it's just all too much!... as things are progressing yet again.. It seems just as your getting used to one symptom and changes a new one pops it's head up. I just feel progression is going too fast.. I would love it just to slow down, just for a little while. I feel so sad tonight at the thought of things changing so much and feel so sorry for my dad...I hate this horrible disease... It's not fair!! :-( ..... Sorry rant over Katrina X

  2. #2
    Forum Member Terry's Avatar
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    Some sad posts tonight Katrina,

    Dad does need the equipment to make his life easier and so that he has more energy. Hopefully it will slow so that you both can catch up a bit.

    Hugs Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member Katrina36's Avatar
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    Hi Terry.... Nice to know I'm not the only one awake right now... How come your still up?.. I know you are 100% right with your reply,, usually I'm the strong one, but recently I feel like I'm falling apart inside... Selfishly I want a lot more time with my dad here without things advancing so quickly... This might sound really bad, but somedays I want to see my dad but at the same time I can't face the sad look in his eyes, but I know if I don't see him more then il regret it.. I see him a few times a week.. Sometimes I leave the house feeling quite good if he's managed to have a bit off a laugh.. Then other times I leave the house feeling so upset, but hold it together until my partner and son are off to bed.... I feel so selfish thinking about how I feel when it's not me having to go through this like my dad is... He doesn't get to leave it behind for the night.... It's with him all the time... Sorry for going on .... Katrina x

  4. #4
    Dippy
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    HI Katrina and Terry
    Thought I was the only one unable to sleep,I think Katrina it is so much harder for you as a carer and you need to be able to experience your feelings and not bottle them up.I think Terry's right once your Dad's got some more equipment it should settle again for a while.I'm waiting for adaptations to my garage,wet room etc.Having difficulty in pulling myself up the bed,I just feel like a beach whale stuck on the bed.I've just moved into the living room,commode,hospital bed the lot.I think with mnd everyone is always grieving and it's so hard to focus on the moment.I think your amazing in the support you give,with a partner and son,be gentle with you and your not being selfish.
    Sending you a huge hug xxx dippy

  5. #5
    Dippy
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    Hi Terry

    Sorry forgot to send your hug xxx

    dippy

  6. #6
    GrannieAnnie
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    Hi Late birds. I feel for you Katrina it is very hard watching some you love struggling. I'm the one in our house who has MND and had first symptoms three years ago. I feared at first for the things I would miss in life, but have come to realise that it was a waste of precious time. Now I go with each day as that's the day I have to work with. If you can make your dad laugh at silly things and join in too, it's amazing how much better one can feel. We can't change things, but we can make the most of every day. Hang in there everyone on the forum will be rooting for you, that's what the forum is about. Night night for now. Xx

  7. #7
    Forum Member Katrina36's Avatar
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    Hi dippy... No I'm wide awake here with you... I don't like nighttimes.... im quite bad for keeping my feelings to myself about things.. Especially with this, I don't want to speak to my mum too much about stuff incase it upsets her,, same applies with sister and brother,, my partner doesn't really understand it,, and I would say dad has enough on his plate... So it's this place that keeps me going,, otherwise I prob would of cracked by now.. I really am hoping that once all these bit and pieces are sorted it does settle for a bit,, it's like being in a roller coaster that you can't get off with all the different changes that keep happening.. Your so brave with everything you face and all the changes your making... I'm sure your anything but a beached whale.. I'd never think that of my dad,, so don't think that off yourself... I'm sure your family don't think that ... Have you had mnd long? and what kind do you have if you don't mind me asking?... Thanks for reply.. It's nice knowing I'm not the only one up right now.... Katrina xx

  8. #8
    willsandco
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    Hello katrina.

    Just go and organise everything they advise. It takes ages to get it done. Our hoists were due on 9th December. One was fitted Christmas Eve and the other started today to be finished tomorrow. Everything takes an age!

    Nobody knows about progression, do they?

    I, like GrannieAnnie, treat every as a bonus but, like everyone, my head goes down sometimes!

    We are all here for you

    Much love

    Joycie x

  9. #9
    Forum Member Katrina36's Avatar
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    Hi Grannie Annie.. I feel so guilty having a moan when all you are the ones going through all the symptoms... I'm usually the one who takes each day as it comes.. But as I'm the one that does all the dealings with dads mnd team.. Unfortunately I get the news off the changes before the rest off the family and have to think about the things that they have told me that the family don't need to know about yet... So I know what's going to be happening but mum prefers not to know until the changes happen that day, same applies with my brother and sisters,, but like my dads mnd team says,, things have to be put in place beforehand,, and can't be left to the last minute,, so it can be hard knowing and dealing with this when everyone else seems to want to bury there head in the sand (I know everyone deals with stuff differently).... Also I can't tell dad too much as he is very much obsesses on timescale (so sad)... And I don't want to frighten him so I take things very slowly with him.. For example today I got him saliva patches ordered from GP as he's really been struggling with this,, but he doesn't mention it as he seems to keep thinking he's a burden on us (anything but)... So I asked mum to tel him I'd done this and he seemed to take it ok... Sorry I keep waffling on... Maybe it was just the shock off all the new stuff/changes again I've struggled with today... Il probably manage to go back to living each day at a time again,, and just enjoy each day... Thanks for replying.. All you people are so nice...night night for now.... Katrina x

  10. #10
    WendyWooG
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    Hi Katrina
    Sitting at night thinking things over and over is the worst isn't it. I have no words of wisdom, I am new to all this and in the middle of being diagnosed. Just big hugs really. The mind races you want to make things better and feel you can't and it's heartbreaking. The main thing is you try and you hurt but you keep doing it, I have a lot of respect for you, you are showing so much love and trying to protect not just your dad but the rest of the family too. Just be kind to yourself. Xx
    Wendy

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