Is this end of life and what can I do??

Discussion in 'End of life care' started by Gg2, Jun 25, 2015.

  1. Gg2

    Gg2 Registered User

    Jul 19, 2014
    81
    My father has late stage Alzheimer's. He started falling last year, then became doubly incontinent and we had to make the heartbreaking decision to put him in a nursing home.

    He seemed ok. A little confused but his symptoms were mainly physical. He couldn't hold his weight and lost lots of weight. At Christmas, his speech became limited.

    I don't think he know who we are since May and now he has started to lean to the side. He is biting the spoon and cup so they are having trouble feeding him.

    The Dr rang yesterday to say he is deteriorating quickly and said she wouldn't recommend going into hospital and to 'make him comfortable'. This included not giving him tablets which seem to distress him.

    I'm lost. What happens now? They are keeping him in bed as he leans. The Dr said being bed ridden will open him up to infections.

    I don't want to lose him. Should I ask if there are other chairs he can use?


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  2. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    Hi Gg2

    Sorry to read of your father's new symptoms.

    Is there a particular person at the care home you can communicate well with? If so find them and share your concerns, yes ask about him sitting in a chair for periods of time, He can still be propped up with cushions if he leans. Hopefully the GP is communicating with the home well too?

    Best wishes
    Sue
     
  3. Gg2

    Gg2 Registered User

    Jul 19, 2014
    81
    Thanks Sue. Yes I'll speak to one of the nurses. I am meeting with the Dr on Monday too. Not sure why she needs to see me again.
    I tried speaking to one of the nurses last night and she basically said 'he's 81 and he's had a good life'. I know he wouldn't want to live like this but it's so hard.


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  4. nitram

    nitram Registered User

    Apr 6, 2011
    18,389
    Male
    North Manchester
    " I am meeting with the Dr on Monday too. Not sure why she needs to see me again."

    She probably feels she should explain any non reversible and deteriorating physical conditions and would like to talk about advanced care plans and DNRs.

    In the absence of any written statements from your father it really is the best she can do to act in what she considers to be in your fathers best interests.

    You are at liberty to agree or disagree with her thoughts.
     
  5. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    It is so hard Gg2. Well that's good that the Dr wants to see you again, it gives you the chance to share your concerns and views and to discuss the best way ahead, keep that channel open with the Dr and nurses as things will change too and it is important you have someone you can talk to about what is happening. Strength to you:)
     
  6. Gg2

    Gg2 Registered User

    Jul 19, 2014
    81
    I've just spoken to the nurse on tonight and she said the Dr wants to meet me about increasing his sedation. Is this dangerous to him?


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  7. nitram

    nitram Registered User

    Apr 6, 2011
    18,389
    Male
    North Manchester
    I think you need to have a heart to heart talk to the Dr about the prognosis.
    Information from third parties can sometimes be confusing.
     
  8. Gg2

    Gg2 Registered User

    Jul 19, 2014
    81
    I feel the Dr has already decided what is best. I spoke to the nurse last night and she said he is still taking his tablets until Monday when I see the Dr. I asked if he took them ok and she said yes. I've never seen him struggle to take tablets. The Dr said the reason for stopping 'unnecessary medication' such as warfarin was because he was spitting them out and they needed to make him comfortable. Are they trying to help him on his way?????

    I feel if I authorise them to stop giving them to him and he has a stroke etc I'll never forgive myself. I don't agree with this. I'm stuck between what the Dr feels is right and what I feel is right. Please help


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  9. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,852
    Suffolk
    I think you have too take a long hard look at the situation. If you feel his life should be extended at all costs, then make your feelings known.
    If, however, you think his life has little quality, then withdraw and let his life come to it's natural end.
    Bear in mind that it is your father and it's his feelings that should be considered. Not yours, however much you don't want to lose him. You have to do what's right for him.

    I'm in more or less the same position, not quite so far along the line, perhaps, but the time is approaching.
     
  10. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    Hi Gg2, the Dr can't/shouldn't fully decide anything without speaking to you so try not to reach any conclusions until you have had your meeting. You are at liberty to express exactly as you have above to the Dr and ask for input from the Nursing staff too, no good Dr, in my view, should be making these decisions alone but with team and family input and they have asked to see you.

    Don't feel bullied into agreeing to something you feel is not right. The Dr should listen to your concerns and explain any rationale for the decisions he makes.

    Be strong,
    Sue
     
  11. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    Good advice from Sue. In addition if you make a decision and then some time in the future change your mind that is perfectly ok. I was asked about DNR about 18 months before my Husband passed; I cried, I just couldn't decide. However, 6 months later, and after talking to friends and family, I did agree to a DNR to be put on Pete's file.

    Take care

    Lyn T
     
  12. Gg2

    Gg2 Registered User

    Jul 19, 2014
    81
    Thank you. I'm 7 months pregnant and its all too much at the moment.

    I have agreed for him to stay at the home and not go to hospital and also agreed to DNR but I feel the stopping of the medication is too much like helping him on his way. I am considering my dad but I'm also full of emotions and maybe in a month or so I might feel better. I don't feel the medication is necessarily delaying what will happen anyway but I feel like stopping it would speed it up and it doesn't sit right with me


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  13. nitram

    nitram Registered User

    Apr 6, 2011
    18,389
    Male
    North Manchester
    " I feel the stopping of the medication is too much like helping him on his way"

    Ask if the medication is still effective.
    His body may not be absorbing it correctly or they may be other reasons.
     
  14. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    Not surprised it's all too much Gg2. I can understand your feelings especially if he is still taking his medication without difficulty. I think you should express yourself just as you have here. The decisions the Drs make are not any easier and they make them based on their knowledge and experience too and part of that experience is discussion with relatives, they learn from them too.

    A very hard time for you, take care and look after yourself.
    Sue:)
     
  15. Gg2

    Gg2 Registered User

    Jul 19, 2014
    81
    Thank you. They say he is spitting them out so not taking them effectively but I've never seen him have a problem and the nurse the other night said he doesn't have a problem usually.


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  16. marsaday

    marsaday Registered User

    Mar 2, 2012
    541
    Hi Gg2,

    I agree with spamar. My Mum takes a lot of meds and is immobile and doubly incontinent. I have already told the home the day she starts spitting them out they are to stop trying. I believe the patient has so little control over their lives at the end. If they are spitting out maybe that's the one last choice they have.
    I think any sort of intervention beyond comfort measures and pain relief at this stage is unfair to the sufferer. It's all very well giving routine meds like heart/bp/ when there is hope of keeping someone living a good quality life.
    Would your Dad want this?
     
  17. kayze

    kayze Registered User

    Jan 20, 2014
    166
    Hi,

    Sorry about how you are feeling.

    I was also in this position a couple of months ago. My husband is on end of life care, he is at home supported by our local hospice.

    When they told me they were going to stop his medication I also thought it would hasten his death, they explained to me that because he was eating very little and immobile the meds would make him feel much worse, they also said that they do not do anything to hasten death but also do prolong life.

    He has since stopped all medication, he is doing ok at the moment, I think it was the right choice for him, he is comfortable, less agitated and he does not become distressed like he did when trying to give him meds.

    It is a very tough decision to make, and everything should be explained to you and your family first.

    All the best

    Kayze.
     
  18. Gg2

    Gg2 Registered User

    Jul 19, 2014
    81
    Kayze, reading your reply now is really comforting. Thank you x


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  19. dslmoore

    dslmoore Registered User

    Jul 21, 2015
    6

    I agree with 'Spamar'. The hardest part of my dad's illness has been accepting that he is gone. The shell I see everyday looks like a version of my dad but it is not him anymore. Think about your dad now, his quality of life and his dignity. It is hard to hear the doctor suggest these things but there may be some sense to them. I pray for a peaceful slip into 'sleep' for my Dad and would hate to think he is suffering any pain (as he can't communicate this to us). A very difficult time for you and I truly sympathise. Be strong.
     
  20. ma120990

    ma120990 Registered User

    Jun 1, 2015
    14
    Southampton
    Sorry to here your woes. My dad just passed this week (Tues 21st Jul) and whilst it was cancer that finally took him his dementia had been horrible in the weeks preceding his admission. During this time he was also on a blood thinning agent and was also spitting out his meds. As a family we took the view that at 82 his quality of life had deteriorated to such a degree that trying to prolong things was only going to cause him more agony. I know this doesn't help answer your question, but we felt we needed to step up to the mark and put our own needs aside and let him go. Believe me when I say its not an easy decision to make, but when the time is near you need to be brave and think of what is best for him at this stage.
     

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