Has anyone got any advice to help with end stage dementia decisions

Discussion in 'End of life care' started by Evie5831, Jul 15, 2016.

  1. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    Hi All,
    Last week a senior staff member at my dad's care home told me that in her experience she believed that he was entering end stage dementia. Over the past week he has increasingly refused food and drink and has just constantly asked to be left in bed.
    Today my family and I were called to A and E as he had "taken a turn for the worse." When we arrived and were finally allowed to see him we found him semi conscious, not able to swallow but rousable for short amounts of time (30-60 seconds) before slipping off again.
    The doctors say he "probably" has pneumonia but as he also has COPD this is still debatable. They have admitted him and are giving him high does antibiotics and intravenous fluids. We have been told "he could pull round or he might not."
    I believe that my dad has now given up his fight to stay alive and that pumping him full of antibiotics and rehydrating him is just prolonging his suffering.
    My question is does anyone one know if I have the right to ask that he be made comfortable with palliative care only and if so how do I go about achieving this for him.
     
  2. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,551
    Ireland
    As he is in hospital, talk to whatever doctor he is under the care of. If there are other family (his wife?) involved, talk to them too. It's a very hard choice to make - I had to make that decision last Summer for my husband - but there often comes a time when choosing to let nature take its course rather than prolong things because we aren't ready to let the person go, is the most loving thing we can do.
     
  3. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Hi Evie,

    I feel for you. My Dad is in hosptial now with aspiration pneumonia. He has Iv antibiotics and fluids and I feel it's so cruel (I have another thread on here about it)

    I have a meeting on Monday at 2pm with the Consultant at Dad's NH to ask just that, I feel it's cruel to keep taking him off to hospital give him Iv fluids and AB's. It is prolonging death, not promoting the quality of life like it would for you and I.

    I don't want him to die obviously but anything is better than this, surely.

    Would you like me to let you know the outcome and if this is even possible? We just want him to be treated at the NH, his oxygen went below 62% on Monday and without an oxygen mask in the ambulance he wouldn't be here now so I don't know if they will agree to it, but surely they have to.

    It's so stressful

    Red x
     
  4. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    I would really appreciate that, thank you. I hope things work out for you and your dad. Heartbreaking times all round.
     
  5. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    From my limited knowledge 'palliative care' in hospitals and Nursing Homes isn't always as non-invasive as you'd think. They'll justify fluids and antibiotics so the 'patient doesn't suffer'. even another lot of antibiotics if the first course doesn't work
    then they'll try another.
    My own mother has now been 'end-stage ' for coming up for 2 years now and has 'come through' a number of emergencies during that time. It really is 'just prolonging the actual death' which is inevitable but we have to watch our loved ones suffer. In fact as I discovered this week when mum had another small stroke they didn't even notify me till late evening (had it in the morning) oreven inform her Dr.- the situation has become so 'normal'.
    Strangely it almost seems because of their dementia, if they generally otherwise have reasonably good health the body, because of being 'kept going' with feeding/fluids etc the body does just that.
     
  6. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,551
    Ireland
    Gosh, lemonjuice, that sounds horrendous! I talked to the doctors in the hospital for the week my husband was there, and they laid it out to me that basically, he was no longer able to swallow, and because of that, the pneumonia was going to be an issue - he would be aspirating tiny particles of food, liquids and even saliva. They let me draw my own conclusions - and I said I would rather him be sent back to his own room in the nursing home and just kept comfortable and have nature take its course, and then the doctor said that that would be his feeling too, that prolonging things at that stage would serve no purpose for William. So he was sent back, with a prognosis of 8 to 10 weeks. And I told the nursing home that I just wanted him kept comfortable - no subcutaneous fluids given, just mouth care, and if he wanted the feel of something in his mouth, yogurt or something. He actually rallied a bit - did well for about six weeks, even ate reasonably well, just yogurt and fortified supplements. But then went down and stopped eating & drinking. The nursing home had consulted with his GP after he had been sent back from the hospital, who had agreed to just keeping him comfortable with no interventions - and he died peacefully, in his own bed in his own room in the nursing home. Neither the doctors nor the nursing home were in any way, at the stage William was at, encouraging any interventions, for which I'll always be grateful.
     
  7. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    It really does sound the fate of our loved ones are in the hand of the docs, LadyA that doctor that you dealt with sounded reasonable. If you can say that when dealing with such a horrific case, but understanding your descion and abiding by it is what I mean. I just hope my discussion on Monday can be just as reasonable. Sad times.
     
  8. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,609
    Female
    England
    My husband who had Alzheimer's for 11 years was constantly being admitted to hospital, being stabilised and back out again. We did have a DNAR in place so they knew we wanted no resusitation. On his last admission we talked at length with the doctor overseeing his care and knowing how weak my husband was he asked very nicely where would we like my husband to be in his last days. He simply said hospital is not where you want him is it? He was so right.

    We certainly did not and the doctor organised all medication to make my husband comfortable and pain free if they were needed. He arranged for hospice nurses to join us and his nurses at the nursing home to help us through what he thought would be days not weeks.

    He returned to the nursing home with just oxygen and he was made comfortable and the oxygen was taken away. Two and half hours later he quietly and peacefully passed away, he needed non of the medication. Talk to your family and talk to the doctors and hopefully you will know which way to go. My husband's death certificate states aspiration pneumonia, late stage dementia and heart failure. I know we made the right decision.
     
  9. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    As I understand the laws in the U.S., if you have a medical power of attorney in place and if your parent has filled out an advanced directive for health care regarding the end-of-life care, then you have every right to say enough is enough, and you are moving your parent into palliative care. It is very difficult to do this, for you, I mean, but sometimes enough IS enough, and prolonging the inevitable only makes it so that the medical team can say "Well, we tried everything."

    If you truly believe your parent would not want to live like this, if he had his right mind, then now is the time to request that all intervention be stopped so that nature can take its course. My heart goes out to you. I had to place my mother in hospice care at a point when she had enough wits to refuse medical treatment. It was a good decision, one made in her behalf, but maybe the hardest thing I ever had to do in my life.
     
  10. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    #10 Evie5831, Jul 16, 2016
    Last edited: Jul 16, 2016

    Thank you
     
  11. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    Thanks everyone for your thoughts and help. We spoke to the doctor today who told us that the next two days will determine whether Dad will come through "this cycle" and that if he does it won't be long before the next crisis occurs. He also told us that the hospital will make the decision as to whether it is time to stop giving aggressive antibiotic treatment, they will talk to us but it will be their decision. At that point Dad will be put onto palliative care and staff will just make him comfortable. More than I hoped for in terms of them recognising the need but less than I hoped for in regards to not being able to make the decision. My heart goes out to everyone facing this situation.
     
  12. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Hi Evie, my heart is with you and your family. I completely understand how your feeling. In terms of the decision it should be down to us as the family as watching our loved ones suffer is not fair. I wouldn't wish this on anyone. Stay strong. Red xx
     
  13. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    Thank you for your kind words and support
     
  14. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Hi Evie, how are things? Red
     
  15. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    Hi Red 66,
    Not such a good day today. I spoke to the same doctor who I spoke with on Friday who said my Dad's infection markers have decreased so he is going to continue with aggressive IV antibiotics with a view to sending him "out"as soon as he can. My dad is still not eating and is only taking in about 15 mls of fluid at a time ( they are giving him IV saline a couple of bags a day) He is spending the majority of his time asleep and can't stay awake even when roused.
    When I raised his sleeping, his inability to speak loudly enough for anyone to hear, his severe weakness (physical therapist tried to stand him up today but found it impossible to get him to the edge of the bed even) and his not eating or drinking the doctor flippantly said " we all have good days and bad." Followed by they will be calling a dietician to confer on whether to insert an NG tube or PEG to feed him through. On Friday this same doctor told me he is a candidate for neither procedure due to age, state of health and his cognition issues so a complete 180degrees. After reminding him of this and my view that this would be distressing and serve no useful purpose for my dad he left me in no doubt that my opinion wasn't relevant!
    I am going to write to the dementia coordinator of the umbrella company of my dad's care home and ask if she can advise me how to go about stopping the invasive treatments should the hospital choose to go down this route but I really don't know what my dad's rights are in this matter or how much power I have to stop this.
    I feel totally lost tonight, I don't know where to go or what to do and feel like I am letting my dad down.

    Sorry to rant at you
     
  16. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Hi Evie, sounds like a complete and utterly nightmare that you and your family are going through. I am so sorry to hear that. I do agree that artificial feeding at this stage is distressing and I feel cruel to prolong our fathers suffering. I do hope today is better day and you can find a suitable route to get what you want.
    I appreciate that you said that you are dealing with a doctor at the hospital, does your dad have a psychiatrist at all? It was the psychiatrist who put into place the Dnar for my Dad, months back. We saw a different psychiatrist yesterday as my dads nursing home is on the border of Liverpool and knowsley. Yesterday she agreed it would be cruel to send dad back to hospital when he next gets a bad chest. What I am saying it was a consultant psychiatrist who we dealt with for those decisions rather than a normal medical doctor. If that made any sense!! Hopefully you can try that.

    Let me know
    Red
     
  17. mynewopenroad

    mynewopenroad Registered User

    Jul 19, 2016
    1
    Could u contact me on Facebook or call me I need someone to talk to if so let me know

    call me I need someone to talk to if so let me
     
  18. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    If you let me know your Facebook IM I can contact you
     
  19. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    #19 Evie5831, Jul 19, 2016
    Last edited: Jul 19, 2016


    Hi,
    I saw your post about your dad on another feed yesterday, I so hope things go the way you want them to, your dad deserves his peace.
    My Dad doesn't have a psychiatrist and no one has ever suggested one so we only have the hospital doctor to consult with. I wonder if we can ask for one to see him? We had this Friday's CHC assessment cancelled on us today as they won't consider assessing him for a NH unless he is "currently resident" in the CH. feels like yet more red tape to plough through, one more hoop to jump but that seemed to be the way things go doesn't it.

    My thoughts are with you, your dad and your family at this tough time, I really appreciate you taking the time to talk to me despite your own worries
     
  20. CBT

    CBT Registered User

    Jul 19, 2016
    1
    Where should our mother go.

    Our mother has end stage dementia and has been in a care home for 15 months. she had a fall 2 weeks ago and, after a half hip replacement, is now ready to return to her care home. When we first took her there we were assured that, although they are categorized as a care home, she would be there for life and they can accommodate end of life care. We were told the only thing would be if she had a stroke and then she would have to be admitted to hospital.
    Now she is ready for hospital discharge the care home have suddenly said they will not have her back. We spent 2 hours today in a meeting with them trying to understand their reasoning but kept being told that we should not have been informed originally that she could stay there and her challenging behaviour means she needs more 1:1 care, which they have been giving but cannot now!
    This is the only place our mum knows now, she loves the carers and knows the environment. We believe if they send her away it will a death sentence because she will not be able to cope with the change.
    We are also very worried about where will take her, although privately funded she can be challenging and we don't know which way to turn. Any advice appreciated.
     

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