Palliative care

Discussion in 'End of life care' started by Angel Eyes, Dec 30, 2015.

  1. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    Mum has been suffering with Alzheimers for around 4 years and is still at home with a 4 visit per day care package. Carers prepare & serve meals though her appetite has been very small for some time. Mum had a chest infection a few weeks ago and has gone downhill very quickly since. She is not eating or drinking - the doctor called Rapid Response team who were visiting between care visits each day to encourage fluids but this support finished yesterday. Mum is very sleepy most of the time and is very week now when she tries to get up to use the loo. The antibiotics caused diarrohea so as a precaution we are currently using pads. We have a DNR in place as I know with certainty this is mums wish and the doctor is suggesting that 'pneumonia is the friend of the elderly'and is suggesting that more antibiotics may not be the best plan if she gets another infection. Whilst deep down I think hes right I cant bear to let her suffer. Does anyone know how long or how painful it might be or if palliative care is available in such circumstances. I will of course ask the doctor this but wondered if anyone has faced similar heart wrenching decisions. Thank you
     
  2. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,999
    UK
    Pneumonia was called Okd Man's Friend for a good reason. Untreated it can take hold very quickly. Mum wasn't eating or drinking much, pneumonia set in, unable to take medication without hospitalisation and passed away 48 hours later. Her dementia was very severe and putting her through hospitalisation, drip, discharge loop many times would have been cruel so I had to make the heartbreaking decision to let her stay in her nursing home but surrounded by family.
     
  3. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    #3 lin1, Dec 30, 2015
    Last edited: Dec 30, 2015
    Hello Angel Eyes, I am sorry you are going through this its hard so hard isn't it.

    Firstly I want to say whatever you choose regarding Antibiotics will be the right decision !

    I remember having a similar conversation with my Mum's GP.
    At that time I couldn't bear the thought of mum suffering due to an infection , so Antibiotics continued to be prescribed as needed also the prophylactic Antibiotic to try and prevent frequent UTI's continued.
    I had also informed the GP that we did not want mum to go to hospital unless it was absolutely necessary and not ever for a chest infection or UTI.

    I want to reassure you that if you choose not to treat infections that their is a lot that can be done to Keep your Mum comfortable.
    if you feel able , it may help you to speak to that GP about your worries and to find out what is available in your area regarding good palliative care,

    Many areas have a specialised Palliative care team, your Gp can refer you

    It is a good idea to have a just in case box to hand, this is basically for Pain relief, so nurses don't have to wait for a prescription

    Many areas have a Hospice at home service, usually they no longer just look after people with Cancer. a GP can refer you to a hospice if you ask.
    Our local one took my Mum who was in the last stages of AD and vascular dementia, for two separate weeks of respite. Dad and I were very impressed with the loving care she received there

    I hope this helps
     
  4. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    Thank you both for your responses and support. We have already decided that we'd prefer mum not to go to hospital or care home if we can possibly avoid it. I am thinking of arranging 24 hr live in care (and of course I will be there as much as I can too) so she doesn't suffer alone. Just off to see her now - she doesn't have an infection at the moment but breathing is quite noisy. That said she was like this 2 weeks ago and rallied. Had similar with dad earlier in the year - not expected to survive a weekend in Feb and still going strong in nursing home. This disease certainly is an emotional roller coaster x
     
  5. maryw

    maryw Registered User

    Nov 16, 2008
    3,805
    Surrey
    Hello Angel Eyes, I understand your concerns. It is the 7th anniversary of my Mum's death today and she died of bronchopneumonia in hospital. If I had to through it all again, I would definitely have sorted palliative care at home. Mum was delirious the last 24 hours and was in some pain. I think they gave morphine, which relaxed her and she died peacefully, or so I was told as nobody told me she had pneumonia and was dying. Home is so much better. Thinking of you xx
     
  6. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    Thinking of you on your mums anniversary x
     
  7. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    My Mum also had pneumonia and we agreed to withdraw all treatment. Actually she passed away peacefully within 24 hours of withdrawal to treatment - she did not have fluids or food but that is another story...... I would strongly advise that you ask for the palliative care team (hospice at home) to be on hand - ask the nurses - and sometimes they will have an emergency pack in case things get difficult for your Mum - they are the experts and know how to handle it all and will keep you informed as well.
    This is a really difficult time and I will be thinking of you
     
  8. betsie

    betsie Registered User

    Jun 11, 2012
    253
    My dad had pneumonia and was on iv antibiotics and a drip for a week. It cured the infection but his dementia worsened and he forgot how to swallow. All drips were removed and I had 19 horrendous days waiting for him to die. If I could go back in time I would have refused all treatment when he first went into hospital.. I'm sure his death would have been much more peaceful and quicker.
    It is so hard though because your heart wants them to do anything they can to make them better, but your head knows that might not be the best thing for them.
     
  9. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    I am so sorry Betsie, you can only do the best you can at the time and that is what you did. I think hospitals should be more supportive in giving more options in more detail to families I am truly sorry xxxx
     
  10. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    Thank you for your comments and sorry you have all faced this. At the moment it seems the crisis has passed - the rapid response team highlighted a change in vital signs and thought mum was harbouring a chest infection which if left untreated (as doctor has suggested may be kindest to mum) could have led to pneumonia. I guess their job is to anticipate and avoid complications and possibly I panicked too soon
    However I'm sure we will be faced with the situation sooner or later and your experiences have really helped. They have certainly helped me realise I am not being a callous, heartless cow (as someone not related made me feel) I truly am trying to do what I know mum would want but it is so hard. Thank you again for taking the time to share your experiences
     
  11. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    Have just received a call from carers to say they found mum in the bathroom this morning unable to bear weight to return to bed. Her breathing wasn't good and she was very pale. They called paramedics who have taken her to hospital. I'm sure by the time I arrive she will be on drips etc. While I was comfortable having the no more meds conversation with her doctor who knows us both well I feel quite intimidated going to the hospital
     
  12. starryuk

    starryuk Registered User

    Nov 8, 2012
    1,299
    Oh no, Angel Eyes!

    I am sorry to hear this. Just as you were thinking things were improving.

    All I can say is that the hospital doctors in my mum's case were wonderful, compassionate and patient enough to answer my constant stream of questions. Dont be intimidated.
     
  13. maryw

    maryw Registered User

    Nov 16, 2008
    3,805
    Surrey
    So sorry to read this Angel Eyes. It was 7 years ago for me but I had trouble tracking down an informed medic at this time of year and my advice would be to make that a priority so you are kept informed and also inform them of your wish for care at home. Hope there is better news later xxx
     
  14. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    i agree with Mary W see if you can find a senior member of staff and try to sort out care at home - I didn't manage it but if i had that time back I would find someone very senior and insist.
    Good luck, thinking of you
     
  15. wobbly

    wobbly Registered User

    Feb 14, 2012
    313
    Mid Wales
    my Dadbroke his hip and had pneumonia on admission, went through surgery, iv antibiotics didn't help and I had to produce the LPA forms to get him moved back to his care home where the gp decided he was on end of life care and set up a syringe driver etc, we lost him just before christmas on the 22nd, funeral is tomorrow.....it is such a hard time, Ifelt like I was being pushed sometimes but Iknew he was never going to get better and did not want him to suffer, plus we knew what Dad would have wanted too.....
     
  16. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    So sorry Wobbly thinking of you today x
     
  17. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    Mum was discharged from hospital to her home on Monday last week. My sister (who is a trained carer) was there 24/7 but it quickly became clear that mum needs 2 people to help her throughout the day and we decided to move her to the same nursing home as dad and we did this on Thursday afternoon. It is the best way for her to be cared for, they have nurses who can control pain & there is a palliative care team on hand. That said the improvement in just 24 hours is remarkable. For 3 days at home she hardly moved, ate or drank and had absolutely no strength in any limbs due to low potassium. Today she is up and dressed and accepted and consumed tea & biscuits while we were there this morning. She was happy & chatty - maybe she feels secure. One upside is that it has been hard to get her to visit dad but now they are just a wheelchair ride along a corridor from each other. The emotional roller coaster continues. With thoughts and prayers to any who are on the down side of the coin at the moment xx
     
  18. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,020
    Yorkshire
    Such a positive post, Angel Eyes
    You and your sister have worked so hard for your mum; it must be such a relief to you to see her improving - and so good for you all that's she's so close now to your dad.
    very best wishes
     
  19. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Fantastic news, well done x
     

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