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  1. Hi Ellie, No- definitely got to stick to the...

    Hi Ellie,

    No- definitely got to stick to the mantra of 'accept the things you can't change' where she's concerned.

    I think I have the courage within me to talk to the manager in person. The...
  2. Hi Guys, Thanks for your replies. Certainly...

    Hi Guys,

    Thanks for your replies. Certainly given me a lot to think about!

    I don't have POA, unfortunately. I bought the forms months ago, not long after diagnosis- she didn't want to fill...
  3. Potential End-Of-Life Content- Sensitive Question

    Hi All,

    My Gran's progression with MND has taken a new turn and, for the first time, I don't know what to 'expect' next.
    I spoke to the palliative team last week and they've told me that she's...
  4. Replies
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    So awfully sorry to read this. You should be...

    So awfully sorry to read this. You should be proud of being such an attentive and caring wife to your husband. I'm sure he would now want you to give yourself the same care, love and devotion that...
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    994

    Hi Shepster, The EMG can be read incorrectly-...

    Hi Shepster,

    The EMG can be read incorrectly- it happened to my Gran before the test was repeated and then she got the correct diagnosis of MND.
    However, I haven't heard of anyone experiencing...
  6. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    Thanks, Lynne :) Terry- absolutely agree. It...

    Thanks, Lynne :)

    Terry- absolutely agree. It must feel so strange!

    The quote from one of the articles I read is below:

    "About a quarter of patients will have a complication, such as tube...
  7. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    Hi All, Gran's chest infection cleared up in...

    Hi All,

    Gran's chest infection cleared up in 2 days and she's now back in the nursing home. She was rather fuming on her discharge day, as they'd told her she was leaving in the morning- they...
  8. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    Hi Nunhead_man, It's a great idea and my...

    Hi Nunhead_man,

    It's a great idea and my other side of the family have the exact same WhatsApp setup for my Nan and Grandad on that side (beginnings of dementia for Nan and Grandad has incurable...
  9. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    Wow- what overwhelming responses :) Thank you all...

    Wow- what overwhelming responses :) Thank you all so much :)

    I went up to the hospital last night and said to Gran that, when she's back in the nursing home and settled, I will be taking a few...
  10. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    Hi Terry, I think she does and that's kind of...

    Hi Terry,

    I think she does and that's kind of the problem- the role reversal has been really hard for her to take. The guilt she feels about asking me for so much help makes her lash out when she...
  11. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    Thank you, Rachel! I will definitely be heading...

    Thank you, Rachel! I will definitely be heading to PALs if the issue hasn't been sorted by the time I get to the hospital later
  12. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    Last time I tried the tough love approach, Gran...

    Last time I tried the tough love approach, Gran screamed at me and threatened to phone the police on me for not leaving the house (this was back just before diagnosis and I was pleading with her to...
  13. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    You would have thought so- they were adamant that...

    You would have thought so- they were adamant that they didn't have one in the AMU when we asked for it, though :(

    With regard to your last statement, Gran does have an OT and palliative care team-...
  14. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    I tried that one last week- she had a load of...

    I tried that one last week- she had a load of visitors throughout the day and I said 'if I'd have known they were all coming up, I'd have left you to it'. Response I got was 'no, I prefer it when...
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    841

    Definitely look at Nursing Homes rather than Care...

    Definitely look at Nursing Homes rather than Care Homes, if you go down this route.
    I agree, you should definitely look at the CQC website (but also go and view places in person because CQC doesn't...
  16. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    Thank you all for your helpful suggestions and...

    Thank you all for your helpful suggestions and virtual hugs! :)

    I went back up to the hospital last night and it seems that it's a really bad chest infection, verging on pneumonia. They're...
  17. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    Thank you- means a lot to have my MND Family...

    Thank you- means a lot to have my MND Family on-side :) x
  18. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    Hi Guys, Thank you so much for your replies-...

    Hi Guys,

    Thank you so much for your replies- they make me feel like I actually have some support!

    I've just come home from the hospital- they've done a chest xray and some bloods. Still...
  19. Thread: Pain/Agony

    by Broostine93
    Replies
    48
    Views
    4,582

    Pain/Agony

    Hi,

    My Gran is being taken to hospital after her nursing home were told by her that she is, to quote, 'in agony' all down the right hand side of her body since last night- they've now phoned an...
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    6,012

    Thank you all for your kind words :) I really...

    Thank you all for your kind words :)

    I really do think it's a case of her trying to be a martyr- if it does give her that sense of pride and/or being in control as much as she can be then I guess...
  21. Replies
    28
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    6,012

    Lynne, I don't know how many times I've asked...

    Lynne, I don't know how many times I've asked myself that same question. I am exhausted trying to make life easier for her- even before her walking was completely gone, I was constantly looking for...
  22. Replies
    28
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    6,012

    Hi Guys, I passed on your (extremely...

    Hi Guys,

    I passed on your (extremely helpful!) suggestions to my Gran, but she said she doesn't want any pain meds and she'd rather stay in her bed. It's her choice, I guess and at least now she...
  23. Replies
    28
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    6,012

    Hi Guys, The palliative team have tried all...

    Hi Guys,

    The palliative team have tried all different kinds of chairs for her to try and none of them have been successful. I do believe they brought a brand new type of wheelchair/armchair thing...
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    2,184

    Hi Helen, My Gran lived alone and, after...

    Hi Helen,

    My Gran lived alone and, after diagnosis, her progression rate was incredibly fast. The care company that we had sound a lot like yours- coming in at the wrong times (or sometimes not...
  25. Replies
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    1,530

    Hi Sue, My Gran qualified for CHC- her OT...

    Hi Sue,

    My Gran qualified for CHC- her OT sorted it all out, with the assistance of the social worker (we didn't even know about it before we received a letter saying it had been awarded).
    It...
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