Is this the beginning of the end?

Discussion in 'End of life care' started by Timeout, Dec 19, 2015.

  1. Timeout

    Timeout Registered User

    Feb 10, 2012
    204
    Hello, not been on in a while, have been reading lots of threads whilst realising that I've been her firstly comparing how mum was in the early stages with the confusion and wandering right through to now where I feel she is entering her final times.

    A few days ago we visited and found her in bed in the CH, this isn't unusual she was having more and more tired days but she wwould always eat and drink her sweet cakes and coffee. A day or so later we had a call to say they were worried about her as she was poorly, not eating or drinking and very, very sleepy, difficult to rouse. When she was roused she was vacant and had a glassy eyed look. She was also having whole body twitches / jerks that they weren't sure the cause was. They were going to keep an eye on her and call a doctor if necessary but yesterday she improved a little and they were able to get her to drink a little and eat a little puréed food.

    We had a call this afternoon to say she has gone down again and the doctor was coming. She is the same, difficult to rouse, not talking in much fluids or food and twitching and jerking constantly.
    The doctor says there is no obvious indication of infection, her chest and urine are clear and she is just to be kept confortable and 'wait and see' how things develop.
    We have all expressed the wish that she isn't hospitalised so that's all we can do, keep her comfortable and 'wait and see'. So difficult, all I want for her is peace.
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,206
    Merseyside
    I'm so sorry your mum is struggling. I wish you all strength & peace.
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,006
    Yorkshire
    So sorry to read your news, Timeout
    Don't really know what to write, except that I send you sympathy and wish you strength - I hope your mum can be comfortable and I wish her peace
     
  4. nitram

    nitram Registered User

    Apr 6, 2011
    19,021
    Male
    North Manchester
    Sorry to hear about you mum.

    As we are fast approaching the Christmas/New Year period perhaps you should ask about the 'just in case pack' being prescribed and obtained.

    Obtaining the prescription and getting it dispensed over the holiday period will be fraught with difficulties and delays just at a time you don't want them.
     
  5. Timeout

    Timeout Registered User

    Feb 10, 2012
    204
    Thank you Nitram, the CH staff don't seem to be saying much at all about end of life, do you think they think she's not at that point yet? I'm sure they've lots of experience of knowing when the end is in sight, the doctor didn't say very much at all, just that there was no infection present and that she should be kept comfortable and keep offing fluid and food. It's something I will broach with the staff though, just hope they understand that by saying it I'm not WANTING it to happen. I fel guilty for even suggesting it.
     
  6. nitram

    nitram Registered User

    Apr 6, 2011
    19,021
    Male
    North Manchester
    It's called 'just in case' precisely because it's kept ready in case it is needed.

    Downturns can be very swift. Drowsiness and reluctance may be a sign that EOL is near, being told that 'she should be kept comfortable and keep offing fluid and food' I would interpret that it is on the horizon.

    I refused to allow my wife to be discharged from hospital unless the anticipatory pack accompanied her, they obtained it on a Sunday afternoon, she lasted 3 months mostly in a coma, I was always glad that it was there 24/7. When the death rattle started I asked them to start using the syringe driver, she lasted 3 comfortable and pain free days.

    I appreciate that you don't want it to happen but when it does I'm sure you want it to be as peaceful to both your mum and you as possible.

    I am a firm believer in having the pack available 24/7.
     
  7. Timeout

    Timeout Registered User

    Feb 10, 2012
    204
    Thank you for your kind reply. I will be asking about it as soon as possible, i don't think it had really sunk in that this really might be the end.
     
  8. nitram

    nitram Registered User

    Apr 6, 2011
    19,021
    Male
    North Manchester
    "I will be asking about it as soon as possible, i don't think it had really sunk in that this really might be the end."

    I found that who you asked made a tremendous difference, some nurses (mainly female) would say 'Oh, she's doing fine' omitting to add 'considering her renal function is severely comprised' , others (mainly male, and especially foreign) would say 'best thing is to keep her pain free and comfortable'.

    I used to spend about 12 hours/day in the care home so I got to know who to ask for what I considered an 'honest' opinion.
     
  9. Timeout

    Timeout Registered User

    Feb 10, 2012
    204
    I agree, conversations are being tip toed around at the moment, no one seems willing to say how they think things will go. Maybe it's because they don't know. We've come home now as she's sleeping, no change, no temp, her blood pressure is ok, there's just nothing we can do and they will call us if things get worse. Thanks to you all for your kind wishes
     
  10. nitram

    nitram Registered User

    Apr 6, 2011
    19,021
    Male
    North Manchester
    "...no one seems willing to say how they think things will go..."

    I sometimes think they are scared of litigation if they give an incorrect diagnosis, it can be difficult to convince them that you just want an informed opinion and realised that nobody can predict the future.
     
  11. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    773
    It was interesting as nitram said you do have to know who to ask. When dad was dying the specialist called me to say everyone has to come now (4 in the family) .
    Son left uni, i came from home, husband left work and mum gor lost getting to hospital.
    Dad didnt die that night and the nursing sister basically rolled her eyes and said in her opinion dad has a couple more days. Dad lived another 42 hours.
     
  12. nitram

    nitram Registered User

    Apr 6, 2011
    19,021
    Male
    North Manchester
    "Dad didnt die that night and the nursing sister basically rolled her eyes and said in her opinion dad has a couple more days. Dad lived another 42 hours."

    Nobody can predict.
    The out of hours doctor who came to certify my wife's death was the one who had visited her 7 hours earlier to look at an infected toe nail, he said he would have given her another 4 or 5 days. Nearly 3 years later I'm still not sure whether I would have relished those extra days, I'd had enough of mouth wide open, cheyne stokes breathing, eyes wide open and looking in different directions.
     
  13. Timeout

    Timeout Registered User

    Feb 10, 2012
    204
    Well the roller coaster continues, the doctor was called out again this morning to prescribe antibiotics as the nursing staff now suspect there is a UTI Present. We visited this afternoon and she looks worse again today. She is looking more sunken in the face, dark around the eyes and her mouth is open all the time as she sleeps. After about 30 mins of talking to her she managed to wake up a little but was very drowsy and her eyes were only partially open.her hands and fingers are dark in colour but her feet and legs look a good colour. Every now and again she tried clearing her throat and left her arms up to grab at something. I just didn't know what to think. To be honest I thought she looked at deaths door.

    After sitting with her and talking to her for 45 minutes no one had been along the corridor to her room at all so I went downstairs where the nurses were sat chatting. I asked to see her nurse and we went to the office. I didn't really get any answers, I explained my fears that she become in pain and that we wanted the just in case pack ready but that was dismissed, the nurse said that because she's 'medically well' (all her vital signs are normal) then she didn't feel that she was necessarliy close to the end but acknowledged she is very poorly at present. I asked how often she would be checked and I was told every two hours. I admit I did have a few tears as I explained that I was fearful of her passing away on her own in between the times they do their checks and also if we don't get called in time. The nurse didn't respond to any of my fears really so I'm wondering if they just aren't thinking she's at that point yet. she did say she is able to swallow her tablets ok but needs lots of fluid to get them down, she is also eating small amounts of sweet desserts

    The doctor will be asked to review her medication tomorrow as they feel that the sedative she is on (olanzapine) is making the sleepiness worse. She has also been referred to the SALT team.

    Thanks all, honestly I just don't know what to think any more, from one emotion to the other.
     
  14. nitram

    nitram Registered User

    Apr 6, 2011
    19,021
    Male
    North Manchester
    I would express your concerns to her GP and ask their opinion.
    Tell them about the skin colouration and her agitation - 'lift her arms up to grab at something.'
     
  15. Timeout

    Timeout Registered User

    Feb 10, 2012
    204
    Another development, they want to send her to hospital because she's dehydrated!

    We stayed the day again, waiting for the doctor to come. The staff nurse at the CH said she'd eaten nor drunk anythhing at all and she was quite concerned about her. She asked if we were prepared for the worst. Agreed that she would ask for a just in case pack for the xmas period. Mum is very drowsy still, loud breathing through the mouth with pauses every now and again. Her feet are starting to go a bluey around the toes. Her face just looks like a death mask. The doctor finally came just now And he wants to admit her to A&E as he says it dehydration that's not helping.

    To be honest I think it's far too distressing for her but hubby thinks that if the doctor didn't think there's a chance for her he'd say. So we should follow his advice.
     
  16. nitram

    nitram Registered User

    Apr 6, 2011
    19,021
    Male
    North Manchester
    I'd ask the staff nurse at the care home for advice, she has observed your mum much more than the doctor has during a short visit. Also ask about the permanent benefits of IV rehydration in A&E.
     
  17. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    773
    Timeout sorry i seem to be the negative one here :(. I specifically have refused for mum to be sent to hospital for forced feeding or rehydration. It was a question that arose much earlier this year when mum wasnt eating or drinking.
     
  18. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    my heart goes out to you all xxxx You know her best of all and you know what she would want - perhaps at some time you have talked to her about how she would she would feel if a decision ever had to be made.

    my thoughts are with you xxx
     
  19. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    614
    Buffalo, NY, USA
    I would be against a hospital. Have they started antibiotics?
     
  20. wobbly

    wobbly Registered User

    Feb 14, 2012
    313
    Mid Wales
    hi Timeout, sounds a bit like my Dad but he is on a syringe driver now for end of life care...your Mum isn't medically well if she is very hard to rouse and dehydrated despite what the nurse says :eek:
     

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