What is end of life care?

Discussion in 'End of life care' started by Tubbsy, Mar 1, 2019.

  1. Tubbsy

    Tubbsy Registered User

    Sep 5, 2010
    108
    Surrey
    sorry to ask such a stupid question but what exactly is end of life care? I had a call from my mum’s care home this morning to say she’s deteriorated hugely this past week and as of today, they’re putting her on end of life care. Also, does this mean that the end is imminent or can it still be quite some time before the end comes? I
     
  2. nitram

    nitram Registered User

    Apr 6, 2011
    18,892
    Male
    North Manchester
  3. canary

    canary Registered User

    Feb 25, 2014
    10,222
    Female
    South coast
    Although end of life is technically when people are in the last year of life, I think that most doctors use this term when they think that the end is fairly imminent - days or weeks. You can never be sure though - people with dementia have been known to rally.
     
  4. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    971
    My mother-in-law was placed in end of life care after only a few weeks in her care home. The care home told us it would probably be a few days,as she had dramatically deteriorated and they called in the GP. In fact, she passed away 48 hours later. That's not to say this will happen with your relative.
     
  5. Tubbsy

    Tubbsy Registered User

    Sep 5, 2010
    108
    Surrey
    Thanks for your replies; does it mean mean my mum will just ‘be left’? She doesnt have an illness other than the Alzheimer’s so isn’t being treated for anything. It’s come as quite a shock tbh, she was doing pretty well but the home just said there’d been a big deterioration this week and now she’s not eating and just opening her eyes.
     
  6. Beate

    Beate Registered User

    May 21, 2014
    11,695
    Female
    London
    No, she will not be "just left". She will be made comfortable and pain-free with pain relief delivered via a syringe driver. You can spend time with her and for example wet her lips with a moistened "lollipop" sponge stick.

    Please remember that in the last days of life people don't die because they stop eating and drinking - they stop eating and drinking because they are dying. Not providing food and drink is NOT cruel - the organs wouldn't be able to cope with it anymore.
     
  7. canary

    canary Registered User

    Feb 25, 2014
    10,222
    Female
    South coast
    No, she wont be just left @Tubbsy
    They will look after her and make sure that she is kept comfortable and painfree with painkillers
    She will be turned and cleaned and offered food and fluid, although she will probably refuse them as her body closes down.
    They will make sure that her passing is as peaceful and painfree as possible.
     
  8. Lemondrizzle

    Lemondrizzle Registered User

    Aug 26, 2018
    22
    We have reached this point today. The end of life care to be given to my mother in law will be pain relief, something to settle agitation and anything else that keeps her comfortable but NOT treatment and no further tests, including observations or blood samples. We have been warned that patients do rally and the consultant did admit they currently have a patient that was put on this regime 12 weeks ago who is due to be discharged to a care home any day now. However my MIL started from a low baseline and frankly it would be a cruel god who let her continue this dreadful suffering.
     
  9. Tubbsy

    Tubbsy Registered User

    Sep 5, 2010
    108
    Surrey
    My mum has perked up today and eaten and had some water...is that usual after being placed on end of life care? She is trying to communicate but not really able to but also seemed to have a lot of pain and cried out even when I sat on the side of her bed and screamed when the nurse touched her legs. It’s all very confusing and disturbing.
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,222
    Female
    South coast
    Yes, it is quire common for them to rally. It happened on three different occasions with mum before she finally didnt bounce back. Im afraid that this going up and down is a terrible roller coaster.
     
  11. Tubbsy

    Tubbsy Registered User

    Sep 5, 2010
    108
    Surrey
    So I went to see my mum again today and apparently she had some breakfast but refused anything at lunch and got very agitated. The nurse in the care home had just given her morphine and said she’s definitely in her last few days. She’s in a lot of pain, for which they’re giving her morphine and to me, she seems scared. She has this look. Whereas yesterday she was responding to me and even smiled once, today there wasn’t really anything. This is so horrible and I can’t help but feel that if she were an animal, she’d be put to sleep and not to have to go through this. For her sake and mine, I hope this doesn’t last too long. I don’t feel I can cope with going to see her every day just to see her like that, just waiting for her to die,
     
  12. Whitey2000

    Whitey2000 Registered User

    Oct 19, 2018
    37
    I feel exactly the same, my mom is in hospital following a chest infection and is a similar situation to your mom. We went this afternoon we seemed to make her more distressed, lead nurse says the end is near and we need to speak to Dr to see how long she may have tomorrow. I can only say you aren't alone, it is torture to see them like this.
     
  13. Lemondrizzle

    Lemondrizzle Registered User

    Aug 26, 2018
    22
    This is the situation we are in. I have made the animal analogy many time over the last few days. Indeed, I think we would face criminal prosecution leaving an animal in in the state my mother-in-law is in. We were terrified for her Friday and we too believed she was frightened. She is now in a morphine induced sleep for as long as it takes for her organs to finally give up and give her peace.
     
  14. Deb57

    Deb57 Registered User

    Feb 8, 2019
    12
    So sorry you are going through this. Regarding the apparent distress, I think there is something called ‘terminal agitation’ which some people experience in their final stage of life. My mum had it and it is just awful to see. Morphine can also have side effects, I think, which may explain some of the symptoms you are describing. I know none of this changes anything but sometimes it helps a little to understand.
    Wishing you well. X
     
  15. hilaryd

    hilaryd Registered User

    May 28, 2017
    84
    My sympathies @Tubbsy - it's a horrible, difficult time. My mum also had 'terminal agitation' in her last couple of days - couldn't seem to get comfortable, and at one point kept raising her arms and looked like she was writing on a blackboard. It was very distressing to see, but soon after she had the palliative medication she settled down completely and was very peaceful from then until the end. We just sat with her, held her hand, talked gently and sang to her - whatever seemed to help her to relax.
     
  16. Lemondrizzle

    Lemondrizzle Registered User

    Aug 26, 2018
    22
    Yes it is undoubtedly terminal agitation which I have witnessed before. Mum too was raising her arms like this but we weren't sure why. She now has a syringe driver with Midazilom added and is much more peaceful. She pauses breathing between each breath which is a higher ratio than a couple of days ago which was around 1 in 4.
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,222
    Female
    South coast
    (((((((((((((((((((((((((((hugs)))))))))))))))))))))))) @Lemondrizzle
    It sounds like your mum is reaching the end now.
     
  18. Lemondrizzle

    Lemondrizzle Registered User

    Aug 26, 2018
    22
    Thank you canary. Although I haven't posted much the information I have gathered from talking point as people have shared their experiences has been invaluable in helping to ensure mum's journey through this terrible illness was as empathetic as possible. Can't believe it is nearly over even though it is the kindess thing for her.
     
  19. Tubbsy

    Tubbsy Registered User

    Sep 5, 2010
    108
    Surrey
    My mum passed away last night after no food or water for 4 days. I had been to see her on Wednesday to say goodbye, though she was already non responsive. The end of a nightmare and 8 years of battling, for her and me.
     
  20. hilaryd

    hilaryd Registered User

    May 28, 2017
    84
    So sorry to hear this sad news @Tubbsy - take care of yourself.
     

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