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Thread: Pain/Agony

  1. #31
    Forum Member
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    Mar 2019
    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 days off because I am exhausted. I told her that I wouldn't be saying this to her unless I was desperate and I think she took it on board (I think she was more willing because I told her I'd let her sister know what I'd be doing and try to get her to 'replace' me for those days). Whether she actually does or not, I don't know.
    I know you're all right- I need to just grow a pair and not leave it up for discussion with her.
    Gillette- I bring my fiance with me one day over the weekend, usually (unfortunately, he finishes work much later than I do during the week and can't make it up to the home with me to visit then). It definitely puts a different spin on things when he's there with me- she doesn't say anything upsetting when he's around, that's for sure.

    She's meant to be coming out of hospital today so we'll see what happens.

    Thanks guys- so, so much xx

  2. #32
    Forum Member nunhead_man's Avatar
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    Jul 2017
    Hi there

    [QUOTE=Broostine93;91771I know you're all right- I need to just grow a pair and not leave it up for discussion with her[/QUOTE]

    Oooh err - I know there was a smiley there, but I am amazed what you have been doing and feel for you in that you are having some difficulty getting your relatives to pitch in.

    I have just had speak to my relatives about the care of my mother, who is 91 and aggressively independent, and in fact what we have done is put together WhatsApp group so that we can keep touch with who is doing what, when and to whom.



    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  3. #33
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    Mar 2019
    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 bowel cancer so that side of the family all pitch in together).

    It's only my Gran's sister and Gran's son that I'd be able to add into a group chat (Gran's brother doesn't know how to use WhatsApp) and, to be honest, the son visits so irregularly/infrequently that I don't think a rota would be of much use (he lives over an hour away and works irregular hours during the week). Gran's sister relies upon her brother bringing her to the nursing home as she doesn't drive.
    It's all very complicated!

    One thing's for sure- once this terrible disease has finished destroying everything and the dust has settled, I'll not be doing anything for anyone else for a really long time afterwards (which sounds awful, but I think you all get where I'm coming from) xx

  4. #34
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Hi Chrissie,

    I hope your Gran is feeling more comfortable today and she is no longer in pain.

    Kayleigh x

  5. #35
    Forum Member
    Join Date
    Feb 2018
    chest infections can cause a lot of pain. Tony has been eating and drinking things he should'nt have and ended up in A&E this week with aspirational pneumonia. He was getting a lot of pain in his chest on breathing. I disagree about MND being relatively painless. This is because the fact that someone's muscles etc are seizing up causes pain, which wouldnt have happened without the MND. My husband is on a pain patch, oramorph, amitriptyline and other pain meds. If you move any of his limbs he finds it very painful. Everyone is different though and other MND sufferers won't get this. But I wish I had known it was a possibility as I could have prepared myself.

  6. #36
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Devonmaid;

    Sorry to hear of Tony's chest infection and hope that is under control now so his more comfortable.

    Most of us experience bad pains at times, muscles, joints, teeth, wind, constipation, broken bones, well the list goes on and on and it's all mostly due to have Mnd.

    Love Terry

  7. #37
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hi Devonmaid,

    I hope Tony is more comfortable today. I agree with you that we often experience pain and Terry sums it up well. I think the information on the MNDA website is misleading.

    Iím going to do this even if it kills me!

  8. #38
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Quote Originally Posted by Devonmaid View Post
    Tony has been eating and drinking things he should'nt have and ended up in A&E this week with aspirational pneumonia.
    Hi Devonmaid,

    Sorry to hear Tony has aspiration pneumonia - would he consider getting a feeding tube or has one been mentioned because of the aspiration?

    Hope he recovers quickly from the pneumonia.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #39
    Forum Member
    Join Date
    Mar 2019
    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 didn't get the transport for her until 7:30pm (I did try to tell her that the ambulances were most likely tending to emergency situations- seemed to make her feel better about it). When she got back to the home, they tried to transfer her from wheelchair to her bed using the rotunda and her legs gave way. They couldn't lift her so had to get her into the hoist. We thought that this would be the start of hoisting (and continued use of those horrid adult nappies), but she's now able to use the rotunda again (think the prolonged stays in bed, without the hospital staff knowing how to use the rotunda properly for Gran's needs and so they just stuck her in the nappies made her legs 'forget' how to stand for a short while). Glad things are 'back to normal' for now.
    Devonmaid- so sorry to hear Tony has pneumonia I hope he has a speedy recovery!
    Ellie- I read up about feeding tubes and aspiration-related chest infections/pneumonia and it said that PEG doesn't decrease the risk- in fact, it increases it! I was shocked to read it, as all of the professionals involved with the palliative care seem to indicate that it eradicates the risk altogether- very surprising indeed!

  10. #40
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Hi Chrissie, Great that your Gran's chest infection has cleared and that she's is now out of hospital. I hope that everything works better now with the care home. I don't know about the rotunda you. mention or PEGs. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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