Page 2 of 2 FirstFirst 12
Results 11 to 19 of 19

Thread: The End- Thank you all

  1. #11
    Forum Member
    Join Date
    Jan 2020
    Posts
    16
    Sending love and hugs x

  2. #12
    Forum Member Broostine93's Avatar
    Join Date
    Mar 2019
    Location
    Coventry
    Posts
    87
    Hi Guys,

    Ellie- it's my uncle, but he's about as useful as a paper brolly.

    We've had a complete turn-around since I posted this thread initially. The hospice weaned Gran off the heavy dose of morphine so she's now on 5mg. Her breathing is more 'normal' and she was sent back to the nursing home yesterday afternoon. (Annoying for me because all of her stuff that I'd moved only a week and a half before, I had to move back after work! But that's by the by).

    She's permanently got the syringe driver in place now, with the morphine and something that dries up the secretions. She's also kept the catheter, which is a massive help due to less need to be hoisted and dangerously balanced on the commode.

    Unfortunately, she is still not eating anything, though she is trying to drink small amounts of liquid (her swallow is all but gone so she literally tips the sippy cup into her mouth and lets the liquid dribble down the back of her throat- I am expecting to see lots of aspiration issues in the near future).

    So, though I was initially told that 'the event' was imminent, it seems we have a few more weeks, as it currently stands.

    As you can all appreciate, I'm half happy and half sad about this- she's barely got use of one of her arms left and I was holding on to the fact that at least she could communicate via writing 'until the end'. Not sure what's going to be left now.

    Thank you all for your always uplifting support xx
    "This, too, shall pass"

  3. #13
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    1,690
    Quote Originally Posted by Broostine93 View Post
    As you can all appreciate, I'm half happy and half sad about this
    I totally get what you mean, Chrissie - an emotional rollercoaster for sure

    The main thing is that your Gran is kept pain free and comfortable, for which I hope the nursing home staff have clear instructions… (i.e. they know if and when to change the morphine and glycopyrronium doses??) I can only hope your Uncle is on the same page as you are regarding Gran’s treatment!!

    Make sure you look after yourself during the exhausting weeks ahead.

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

  4. #14
    Forum Member
    Join Date
    May 2018
    Posts
    418
    Hi Chrissie, Thank you for keeping us updated.

    Its sounds like your Gran is comfortable and pain free. You are such a loving and devoted granddaughter and you Gran is lucky to have you .

    Take care of yourself and wishing you strength in the weeks ahead,
    Love Debbie x

  5. #15
    Forum Member Broostine93's Avatar
    Join Date
    Mar 2019
    Location
    Coventry
    Posts
    87
    Hi Guys,

    The staff seemed to know what they were doing last night- they came in to check her driver and change her pad just as I was about to leave.

    Unfortunately, I am still the 'get Gran as comfortable as possible, even though that's impossible' person (to be honest, I don't want to keep having to do this every day because 1) it's dangerous for her, especially with the catheter in now- I literally have to pull her by the bed sheet or put my hands underneath her to shift her sideways and 2) it's dangerous for me- felt like I was about to snap my back last night). Of course, I'd love for her to be comfortable all the time, but it's just not possible anymore, sadly.

    My uncle is mostly just going along with whatever I say because whatever I say comes directly from Gran's choices. I do feel quite bad for him at the moment, though- he had a motorbike accident a couple of nights ago and had to go to A&E with concussion (Haven't said anything to Gran because he asked me not to and because she would panic).

    Love to you all xx
    "This, too, shall pass"

  6. #16
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    453
    Good afternoon Chrissie

    As with everybody else thank you for keeping us updated and hope the nursing home is working out well.

    Hope your uncle despite being not much use to you is not been too badly injured?
    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

    "Things turn out the best for people who make the best of the way things turn out"

  7. #17
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    873
    Chrissie, it sounds like your gran could have benefited from a feeding tube and eye gaze commynication. Hasn't her MND OT or her neurologist talked about these things?, love Lynne x
    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.

  8. #18
    Forum Member Broostine93's Avatar
    Join Date
    Mar 2019
    Location
    Coventry
    Posts
    87
    Hi Nunhead- He had a little concussion, so not too badly injured. I think he was more shocked than anything.

    Lynne- Myself and the Palliative Team kept on urging Gran to have a feeding tube whilst she still could, but she kept refusing until it was too late for her to have one. I've tried her with speech apps, including one that can be controlled with eye gaze, but she just can't seem to grasp the concept of the technology (not surprising, as she would never even have the most basic of mobile phones prior to becoming ill).

    Over the weekend, her choking episodes became more frequent, particularly overnight on Saturday. The nurses gave her additional morphine and something to clear up the mucus. She still hasn't eaten anything and says she still isn't hungry, so that's now 3 weeks without food or any kind of nutrition. Her nurse spoke to me on Saturday to say that there is blood in her urine and it's evident that her kidneys are shutting down because the colour of her urine is nearly black (and there's very little of it due to her not drinking very much- she admitted to me that she is scared to drink because that's what causes her to choke). They have started adding a little thickener to her liquid, which she never accepted in the past.
    She also has a grade 2 bedsore under her bottom, but she can't have it alleviated via a pillow under her because it makes her literally fall to the side and she no longer has the strength to pull herself back up when this happens. I do believe they're going to try her on a different mattress to see if it helps, but I can't see her accepting it (she can't stand those ripply-type air mattresses). Her heels are equally sore- her feet are placed inside some kind of bubble-wrap-type pair of boots- I think they're helping a little.
    "This, too, shall pass"

  9. #19
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    1,690
    If your Gran's body is shutting down, Chrissie, the nursing focus should be on controlling every single bit of pain and discomfort she has - that is the essence of palliative care.

    That may mean more morphine and appropriate treatment for the bed sores - have they even put a hydrocolloid or an alginate dressing on her wound? (They should be readily available in a nursing home) If your Gran is wearing pads and it's continence-releated, ask for her to be prescribed Cavilon Advanced (not the Cavilon Barrier Cream) which is applied every few days.

    But, the main thing is, as I said, at this stage the lady should not be feeling even a twinge of pain...

    Hang in there.

    Big, big hug to you and to you Gran.

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

Posting Permissions

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