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And so it begins.....

Discussion in 'End of life care' started by Kikki21, Mar 19, 2019.

  1. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    Thank you, I have had a bit of gin liqueur with lemonade which was well needed so hopefully this will help me sleep xx
     
  2. lis66

    lis66 Registered User

    Aug 7, 2015
    238
    More (((hugs ))) thinking of you at this heartbreaking time ❤️❤️
     
  3. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    Thank you. Still not asleep. Have gone all tense again. I know I can ring Chloe but i’m going to pass on that as what if she says that my mum is unsettled. I definitely wouldn’t sleep then.
     
  4. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,738
    Female
    Kent
    I don’t know if this will help you to know, but in my late husband’s last hours, the nurses told me that he might appear to be struggling, but it is the body struggling...and the person is not always aware. I found it a comfort. I truly hope that your lovely mum is having a peaceful night and that you manage to get some rest. You continue to be in our thoughts.
     
  5. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    Thank you. My mum is still definitely aware that she is coughing & maybe it isn’t painful but it is causing discomfort. I wish that they could stop her coughing. Otherwise she is peaceful & settled. I couldn’t get to sleep for ages & have woken up now. No phone call from the hospital.

    My fiancé was very worried about her last night & didn’t think she would live too much longer.
    I have said so many goodbyes to her.... each time I leave her.
     
  6. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    There is no change in how she is this morning, just rang the ward. I feel exhausted.
    My mum seemed to have a bit of awareness last night. She said something about doctors & seemingly was not happy about something. She said something was stupid.
    She then said my well off cousin’s name. And then asked if my fiancé was my husband. She
    might have been out of it a bit from the morphine but she seemed quite lucid.
    I reassured my mum that my fiancé was there & said we were happy & maybe she just wants that reassurance for me that I will be ol.
     
  7. SaraKate

    SaraKate Registered User

    Dec 29, 2018
    47
    I send you so much sympathy in your vigil. You are doing a beautiful thing in staying at your mother's side to say goodbye to her - dont worry that you think you might do it better - you are doing the finest thing a daughter can do for her mother, and she knows that you are there. Look after yourself too, this is the hardest time but it will be over soon and then you can remember your mother as she was for most of her life. I will think of you and her today
     
  8. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    Thank you - we are not by her side all the time but with each day that goes by, I am spending more & more time by her bedside in the hospital. I do have to try & look after myself I know at this horrible time and I do have a business to run..... luckily I don’t have an event until next Friday evening & I do have some orders to post out but everything feels very trivial at the moment & I can’t focus on stuff. Not a surprise really.
    I can feel all the support of this lovely forum & I thank you all for that xx
     
  9. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    2,319
    Continuing to send hugs and good wishes to you. Im not surprised you feel exhausted both mentally and physically, you must be drained. Feeling for you, take care.
     
  10. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    Thank you. I am amazed that she is hanging on to be honest. I didn’t think that she would last more than 48 hrs with just the syringe driver meds. I keep thinking what if we are wrong & that it was the antibiotics making her sick all along ( they have done so in the past) & that now she is off them that she is trying to fight the infections.
    My fiancé thinks I should speak to a dr about it but of course it is a weekend & they are in short supply.
     
  11. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    I have been keeping the care home informed & just spoke to them now. They reiterated that they are more than happy to have my mum back as they do end of life care at the home.

    The hospital did inform them that my mum was on end of life care but as she is/was very poorly they didn’t want to move her. And I didn’t want to move her either but to be honest, the hospital is a busy & noisy environment & it is not exactly peaceful. She is not getting one to one care as such. Yes she gets attended to every couple of hours to change bed position & has her meds looked at when we are not there.

    I just don’t know if my mum could be moved & whether it would be safe to move her. For all I know, it might bring about her demise far quicker but maybe we do need to review this xx
     
  12. Whitey2000

    Whitey2000 Registered User

    Oct 19, 2018
    37
    We had the same dilemma. They moved mom to a side room, so much better for her and us x
     
  13. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    2,319
    Before mum went into the NH she was in hospital, both on a ward and in a side room. She found the ward very distressing with all the activity and noise. She wasn’t much happier in a side room but at least it was more peaceful for her. The nurses, though lovely, had their own ideas about dementia. I think it might make it clearer if you can find out whether she could be moved in the first place then take it from there. Knowing what to do for the best is hard at the best of times let alone in your situation. Not much help I know, sorry.
     
  14. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    The side room was talked about a few days ago when she went onto end of life meds but then not been discussed further. I don’t even know if that would be good for her either as it might signal to her that we are giving up on her.
    I have said before about the noise on the bay & it is difficult to hear mum try to talk with all the noise going on. Maybe she is not aware of it like we are, maybe it is that background noise that helps her stay alive. I just don’t find that it is very dignified for a person on end of life care if I am honest which is why I have thought about moving my mum back to her care home. X
     
  15. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    Any advice is helpful @Rolypoly. I might ask to see a side room if one is available & ask who would look after my mum if she is moved there. It might be the compromise we are looking for. It seems a pretty much high dependency ward where she is & a lot of the ladies have dementia & are elderly.
     
  16. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    2,319
    Maybe think about atmosphere of where your mum is/might be. Weigh up the pros and cons, question and listen to the professionals then go with your gut. If it feels right for your mum then it is. Once you have made that decision try not to question it, there will always be what ifs.
     
  17. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    Thank you. I had a lengthy conversation with cousin G. My mum seems to be the same today. Quite settled ish. But she has cried out a few times & looks unsettled, screws her face up. I stroke her hand then go sshhh to her. The woman who had had a stroke has been moved. The ward should be more quiet but there are quite a few visitors today around. My mum is the most poorly out of everyone on the bay.

    It’s a male staff nurse on duty today & I haven’t seen him before but I think I talked to him this morning. I asked the nurse changing my mum’s catheter if there were any doctors around but in short supply of a weekend.
    My mum is still producing urine despite not eating or drinking much at all. I know that putting her back on meds might not solve anything & even if it sorted her infections than her quality of life would be severely compromised.
     
  18. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    I guess what I want to know is if she is too far gone to bring back to some sort of existence seeing as she is clearly fighting so hard to stay alive. What I don’t like is this all being quite undignified on a ward :(
     
  19. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,816
    Nottinghamshire
    I know I was happier when my dad was in a side room in hospital but I honestly don’t think it made any difference to dad. Different I know because he wasn’t declared end of life, although I did wonder once or twice if he would come out alive.

    If you’ll be happier with your mum being in a side room I think it’s worth asking if she can be moved even if your mum doesn’t care where she is.
    It’s a shame she’s too poorly to go back to her home.
     
  20. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    I’m not very happy with the care on the ward today. They seem to be short staffed & the staff nurse has let the syringe driver warning beep go off twice & then I told him it had & now it is full on beeping while he has been in the room mixing the meds for about 10 years!
     
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