What's the point? It's just cruel

Discussion in 'End of life care' started by Red66, Jul 12, 2016.

  1. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    So, Dad has aspiration pneumonia yet again, he has been on co amoxiclav for last 7 day in nursing home, 2 weeks prior he had another 7 day dose and a month before that a 7 day dose.

    Yesterday went to visit the home and there was an ambulance outside as well as a paramedic , I said to Mum, I hope that's not Dad .

    We go to sign in and have to move out the way quicky as a person was getting rushed and stretchered out. Guess who it was? You got it, my 73 year old father who has AD, VD and Lewy Body Dementia with a gas mask on, gurgling and struggling to breathe with froth coming out of his mouth. Nice to be told by the nursing home isn't it?!!!??

    Anyway, got rushed to hospital as oxygen levels dropped, gone grey and couldn't breathe unaided for choking on the froth and being extremely poorly.

    Long story short he brought up over a pint out of his lungs. He has been given IV co amoxiclav, fluids and paracetamol. He is stage 7e approximately in terms of dementia.

    I (yes me and not the he doctors or nurses) was helping him clear his mouth of all the froth as he couldn't do it himself, I was fearful he would choke. We have a DNAR in place!! Instinct kicks in I suppose.

    I just find giving him IV fluids and antibiotics is just wrong, it's a cruel existence as it is, never mind prolonging his death which will put him at rest. Meds are meant to promote the quality of life surely.

    Feel like I'm going mad with it all. I love my Dad dearly but this is just wrong.

    We have a PoA in place too, but it appears to be not to be worth paper it's written on as Dad didn't do an Advanced Statement too.

    This morning he us settled and getting his swallow assessed, just great, honest.

    I'm numb, can't cry, just waiting.
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,303
    Yorkshire
    Hi Red66
    so saddened to read your post
    your poor dad
    and you and your mum too
    so hard on you all

    I have no words of wisdom - just oodles of sympathy
     
  3. pins tony

    pins tony Registered User

    Oct 20, 2014
    213
    bristol
    sorry

    What a cruel place dad and your dad and the family are in I have no words to say to support you in this sad time except to say take care were always here for you on T P
     
  4. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,942
    North East England
    Awfully sad.... Have you spoken with dad's GP about instigating an Emergency Health Care Plan....ie agreeing what is and is not acceptable in terms of emergency treatment. I had one of these in place for my late Mum, which stated that she was only to be taken to hospital in the event of physical trauma needing treatment, and if she needed ABs, then oral was permitted but no IVs. This ran in conjunction with the DNR. This was all agreed with the GP and me, although he did ask Mum, my wishes would have been paramount if and when the plan was actioned. The CH abided by these, although they did call out the Paramedics one time, they did not take her into hospital, but sat with her until the GP arrived to give her ABs.
     
  5. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    Hello. I'm sorry you are experiencing this.

    When my mother was going through a situation like this, I remember feeling a quiet outrage that when our pets enter into a situation where they are dying, we put them to sleep, humanely, as that is the caring thing to do. Yet when my mother was like this, I had to watch her suffer and suffer. She lived with me, and the end-of-life care for hospice patients where I live is that we only offer palliative care, nothing extraordinary and certainly no medications that would extend life.

    My mother died in my home.

    Would it be at all possible for you and/or your mother to take your dad home again, with care assistance, to let your father die at home? That way, you'd be there for him, and the care home would not be making such inappropriate decisions.

    I just wondered. Without the support of the hospital staff, your father probably would not be alive now. I agree: why prolong the inevitable, if the patient is suffering?
     
  6. Slugsta

    Slugsta Registered User

    Oh Red, I am so sorry that you are all going through this hell.

    Pneumonia used to be called 'The Old Man's Friend' now it is not allowed to be so.

    A Victorian poet wrote 'Thou shalt not kill; but needst not strive officiously to keep alive' perhaps some medics should learn from this!
     
  7. angecmc

    angecmc Registered User

    Dec 25, 2012
    2,108
    hertfordshire
    Hi, yes we did this for my Mum, we were rushing off to hospital every few days, waiting there sometimes for over nine hours, not good with a dementia relative, only for them not to find anything major and we then got to take her back to the home. Thank goodness this has now stopped, they know now only in a dire emergency must she be admitted. Hospitals are an awful place for anyone with dementia, we try to avoid as much as possible.
     
  8. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Thank you all for your responses very kind of you to take the time.

    Been to see Dad this afternoon and he had certainly perked up, although it's all under false pretenses. IV fluids and antibiotics are marvellous but let's face it they can't fix a faulty swallow!! So how long before back to square one.

    We have an ACP meeting on the 18/7 whereby we can request he doesn't go to hospital unless it's an emergency, but not sure what that will do really as anyone would consider yesterday an emergency, the man went grey. Is this similar to an Emergency Health Care Plan ??? Certainly will take that info on board. Also this meeting is to take him off Quetiapine and prescribed Lorazepam.

    I will see if they can withhold IV antibiotics too as it's not fair to keep him going through this hell. He has a pacemaker too! Just great.

    My poor Dad could walk, talk, feed himself, go on bus rides you name it in November 2015. Then he got sectioned for wanting to go out on his own. Heart breaking. Happened so fast, but then I think if it was inevitable anyway quicker the better I suppose.

    I feel guilty yet I know I am doing the right thing, tell anyone else this and they look like your a murderer when all you want to be is a saviour, in a way. He is just under 7 stone now and stuck in a bed, that is no life in its self never mind the full package that a person with dementia has to go through. Sheer hell.

    I've turned into a right moaner and i'm on a crusade that I won't win. Rubbish.
     
  9. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    414
    Glasgow
    Oh, Red, I really feel for you so much. Your dad is suffering, and so are you all. I know exactly what you mean watching all the IV's etc. You want peace for your dad, as I do. I have a plan in place that dad won't be transferred to hospital again with the next pneumonia, but remain in the CH and be treated there.. I don't know if this will be the case if (when) it happens...Thinking about you. Painful times. X


    Sent from my iPhone using Talking Point
     
  10. Red66

    Red66 Registered User

    Feb 29, 2016
    363
     
  11. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    414
    Glasgow
    Hi Red, it was the consultant at the hospital who said dad 'would be better remaining at CH' if he got another pneumonia/ he'd had 2 in a month Dec and Jan. I don't think they can give IV at the home, but dad has just finished a course of oral antibiotics for another infection..I hope you're getting some rest. The hardest thing is to know that we just don't know. So horrible for you watching your dad in this distress, again. Xx


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  12. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    614
    Buffalo, NY, USA
    In the US a MOLST or POLST might say, no IV medications. Meaning the person must swallow each dose by choice and ability.

    Are you able to request palliative care at the CH?
     
  13. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Thank you for your response Gwendy and Celia.

    Celia the Poet they have district nurses to come in for palliative care, together with the usual NH staff. Not sure how that works though!

    What is so gross is Dad is still spitting out yet on antibiotics and fluid, so much so you can't even get near him for fear of being covered. He must be so uncomfortable, it's horrible. The hospital are saying that they can't get a sample as he either spits far or swallows it again, I say swallow but have no doubt it's going back in his lungs.

    I have never seen my Dad spit in his life. But since he had the first bout of aspiration pneumonia over easter that was it. Gwendy your poor Dad having it so close together. That's awful. It's horrible to witness, I still feel in shock as it is.

    This can't go on surely. I feel so helpless.

    Red
     
  14. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    414
    Glasgow
    How you doing, Red? I'm just back from visiting dad at CH.. He didn't say a word, doc again tomorrow, I fear another chest infection looming.. Is your dad any more comfortable ? Thinking about you all. X


    Sent from my iPhone using Talking Point
     
  15. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Hi Gwendy,

    He seems more comfortable at the moment, but he is still on IV antibiotics and fluids so can't expect much else. His dementia seems worse but I suppose if anyone oxygen drops to below 62% it's going to affect the brain. I know like you once he goes back to the NH it's not going to be long before it happens again. Just hope on Monday that at this meeting our request of him not going to hospital anymore is honoured.

    Like someone said before if a dog was ill they are put to sleep, out their misery. What's different about us?? Decisions are made in their best interests they don't sign an advance statement!!! Crazy.

    It's so awful Gwendy watching your poor Dad, and you know him you know what to watch for. I find that when we have said that Dad isn't well or he is coming down with something they check him over in the NH and say his obs are fine. A day or two later his is poorly. You just know, you know the signs. It's such a shame. Thinking of you and your family, let me know how he is today xx
     
  16. Pear trees

    Pear trees Registered User

    Jan 25, 2015
    441
    I hope your father finds peace soon, and you find the strength to continue through this difficult time.
    My mother is currently in hospital following UTI and sepsis, not sure how it will end.

    It is humane to put a loved pet out of their suffering, why is it humane to allow an elderly frail woman to
    slowly die whilst having pointless treatment to prolong a life that she is now only enduring?
     
  17. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Thank you for your post pear trees. This is horrific, such a sad situation to be in.

    I am worried that I will feel guilty once he passes but I know I am doing the right thing by requesting no antibiotics and iv fluids, it's what's keeping me going at the moment. Our poor parents, they aren't even a shadow of their former selves, certainly not under 7 stone anyway.

    Laws should be changed on this, they really should.
     
  18. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Hi Gwendy,

    How is your Dad today? Been thinking about you, so many of us in the same position

    Red xx
     
  19. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    414
    Glasgow
    Hi Red, my wee dad seems ok, up/down..never know how he's going to be. He's speaking again, so that's something. His tremor is now very bad, still choking/ coughing, but his chest is 'clear'..More bloods away, wait and see.... God knows what the point of it all is. Poor dad. :-( How's your dad doing? And you? Xx


    Sent from my iPhone using Talking Point
     
  20. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Hi Gwendy, interesting that you say your Dad's chest is 'clear'! I kept getting told this and we would be saying he's not well and after a while he would end of up antibiotics. When he is coughing/choking all the time and bring stuff up I am not sure how it can be clear. It's crazy. Then we end up with a chest infection obviously. Went to see him in hospital earlier and he was fast asleep. Best way to be really, at least he is more peaceful that way. Nurse said he has another bed sore on his hip sadly. Just no life. Like you say no point really and we just have to stand back and watch. How sad. We are just waiting blood cultures....... Xx
     

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