Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 29

Thread: Not Coping Well

  1. #11
    Forum Member Broostine93's Avatar
    Join Date
    Mar 2019
    Location
    Coventry
    Posts
    75
    Hi Ellie,

    Thank you for everything you said above. I know what you mean RE giving me a breather from worrying about caring for her.

    RE breathing- she has a sleep test done last night and it's bad news. Seems that she has a minor chest infection, but also she has apparently gone into the beginnings of respiratory failure. Unfortunately, that does mean she won't be suitable for the PEG procedure according to the specialists.

    From the start, she said she didn't want the NIV so I don't really know what that means for us- I'm fearing that we only have a short time left.

    Can't concentrate at work now- far too upset

  2. #12
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    431
    Hi Broostine

    Quote Originally Posted by Broostine93 View Post
    but also she has apparently gone into the beginnings of respiratory failure(
    I quite understand why you are upset - a diagnosis of motor neurone disease always upsetting both to the person living through it and the person supporting them.

    Do you happen to know what the check on her respiratory system said?

    In case you do not know this is usually measured by the comparison between the person standing up and the person lying down because as when you are lying down the muscles that assist your breathing when you are standing up, do not act so it isolates the function of the diaphragm, and tells you how much damage there is.

    Stay strong if you can

    Warmly
    Warmly


    Andy

    ​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. #13
    Forum Member Broostine93's Avatar
    Join Date
    Mar 2019
    Location
    Coventry
    Posts
    75
    Hi Nunhead,

    Unfortunately not- I was at work when the respiratory specialist was there to give results- it's the kind of thing my Gran wouldn't think to remember to tell me about afterwards. Regardless, they wouldn't be able to do any test of her standing up as she can only stand for about 2 seconds (just long enough to transfer from wheelchair/commode to bed and vice versa before her legs give way. Just very worried about how long we have left with her now

  4. #14
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,485
    Hi Chrissie,

    I was sorry to read on another thread that your poor Gran is confined to bed due to pain in her peroneal nerve

    Has the care home not got any riser-recliner armchairs in the lounge where she can put up her legs and at least have the company of the other residents?

    Is she taking Gabapentin, or similar, for the nerve pain? At this stage, her quality of life is paramount so even if taking Diazepam eases her pain, she should think about taking small doses of it if her muscles are in spasm. (Benzos can depress breathing)

    Take care.

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

  5. #15
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    931
    Hi Chrissie. I agree with Ellie. Your grans quality of life is paramount and being in the same room every moment of every day, is more than cruel. If she can get onto a commode, surely she could get into a decent wheelchair. That's one with whole body support and tilting to make her comfy. Then as Ellie says she could go in to the lounge for company and maybe some tv watching, or other entertainment. She could also go outside in their garden (hopefully they have one) for some fresh air on a warm dry day. Maybe speak to the manager of the care home about getting her out of her room and her mnd team about medication that would ease peroneal nerve and other pains. Good luck. Ring MNDA if you need help. 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.

  6. #16
    Forum Member Broostine93's Avatar
    Join Date
    Mar 2019
    Location
    Coventry
    Posts
    75
    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 for her to try and even that was painful after 5 minutes apparently.
    We think that the nerve was damaged after a slip on some black ice a year and a half ago- the scans showed nothing, but it's been getting progressively more painful and caused her to have rapidly-progressing drop-foot ever since it happened.
    The problem with nursing homes is that the staff have so many people to help that they cannot just get my Gran out of bed for a 5 minute trip around the home/in the garden, just to put her straight back into bed again- Gran seems to accept this and the nursing home staff have tried to get her out (though, I think that they believe she's putting on how much pain she's in- this is a woman that I've never heard complain about anything painful in my entire life, so I know that when she's in pain, it's a hell of a lot of pain indeed).
    We had the riser/recliner at her house before she moved and she couldn't even sit in that for more than 20 minutes (and that was a month ago, so the pain has gotten worse by now, so I can see her point in wanting to just cut out the faffing and stay in bed, really).

    It's distressing for me to see her in the bed all the time, but I don't think there's anything we can do. I just worry about if ever she needs to go to hospital for any appointments or to possibly have a PEG inserted- she won't last long en-route as she will have to go in a chair (the nursing home lifts aren't big enough to get the bed into, so she'd have no choice).

    Doctors have been out to see her weekly since her move and none have prescribed any pain medication- she's on Riluzole, Baclofen and Quinine only.

    Thank you both for your concern- it's really appreciated xx

  7. #17
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,485
    Hi Chrissie,

    Thanks for the explanation.

    I do think more could be done for your Gran, starting with pain meds, which could mean she's not confined to bed and allow her to interact with the other residents - she must be in a low mood.

    Usually Gabapentin or Amitriptyline are prescribed for neuropathic/nerve pain and, if it's not working, a higher dose may be needed.

    You may need to meet her Doctor or speak to the Nurse Manager and insist your Gran is properly looked after. The care home is taking the easy way out - of course your Gran doesn't want through go through the pain of sitting out, so that pain must be dealt with.

    Sorry if I come across as harsh but your Gran has been diagnosed with a pretty awful disease and deserves the best quality of life possible in the time she has left. (That doesn't mean I think she hasn't much time left btw!!)

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

  8. #18
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    931
    Thanks for your long explanation about your gran Chrissie.
    It sounds like she's seen rubbish doctors not giving her pain killers. I'd complain if she was my relative. Good luck for your gran to get relief soon so that she can get around painlessly. 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.

  9. #19
    Forum Member Broostine93's Avatar
    Join Date
    Mar 2019
    Location
    Coventry
    Posts
    75
    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 knows that there's the option if she wants it.

    She seems alright in herself and, funnily enough, she never ever complains about any aspect of the disease itself (she complains about there only being one carer on her floor during the night-time shift, but I can't do anything about that, unfortunately). The woman is a warrior (and, thankfully, once her chest infection cleared up, apparently her breathing has gone back to normal so we're out of the woods RE respiratory distress for now).

    She was low in herself yesterday, but it was the 2nd anniversary of my mum's (her daughter's) passing and we also lost my dad's sister yesterday morning after a 10 year battle with secondary breast cancer, so emotions were running very high.

    Thanks again, guys- your knowledge on how to cope/manage with all the things this disease throws at us is astounding

    xx

  10. #20
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    931
    Hi Chrissie, sorry about all of the stress that knocked your gran and maybe you down. Hopefully things will pick up in the near future. I don't know how or why your gran would want to stay in bed instead of getting the pain sorted and going outside or in the day room. Has she given up on life already? If so that's a real shame for all of her loved ones. But hey, it's her decision. I'm sending you electronic hugs, take care. 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.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •