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Is this the end stage?

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

  1. Dimelza

    Dimelza Registered User

    May 28, 2013
    130
    Dads swallowing has deteriorated this week, he's barely taking in any fluids either. He sleeps almost all the time, eyes open for just a minute or so with nothing in them. Barely a sound from him and his good arm flailing around. He's developing a sore so is having the morning in his chair and afternoon in his bed.
    He may have a UTI as his urine is strong and smelly so the ch have arranged antibiotics. They know my wish is to keep him there. We've a DNACPR now too.
    I wish there was a crystal ball as I'm on edge just waiting for that call from the CH.
     
  2. Shazedge

    Shazedge Registered User

    Nov 11, 2015
    27
    I'm so sorry to read this and it certainly sounds as though the end may be near. Very similar to my own dad who eventually passed away on the 20 December after 5 months of being in a MHU. Make sure the CH have plans to keep him comfortable during his final days, I am sure they have discussed this with you, it will help to see him totally rested and not agitated or in pain.
    Sending you lots of love and strength at this very difficult time xxx
     
  3. Dimelza

    Dimelza Registered User

    May 28, 2013
    130
    Thank you shazedge. I'm so sorry for your loss although if you're like I feel, I'm longing for dad's release from this disease.
    Im going to discuss it with them today, as I'm going away with my family for a few days as celebration of my sons 11th birthday and an end to what's been an extremely difficult year. Only an hour or so away thankfully.
     
  4. Shazedge

    Shazedge Registered User

    Nov 11, 2015
    27
    No problem at all my heart goes out to you because I know exactly what you're going through and sounds as though we are similar in age.
    Such a hard time ahead but the release when it comes is a mixture of relief that dad is no longer suffering and is free from the living hell that is AD and deep loss and emptiness at his passing. All very hard but I wish you well and enjoy your time away with your son, it's so emotionally draining for the entire family and especially for young children.

    Take care and hugs x x x x
     
  5. Dimelza

    Dimelza Registered User

    May 28, 2013
    130
    Well I'm away with my little family and it's been a lovely relaxing break. NYE and NYD were a bit glum I felt so low. However I woke much brighter yesterday and also had the amazing news from my mum and my aunty that dad was much more alert, trying to talk, seeming to understand and awake all afternoon?!
    He's now being given what mum described as smoothies and loving these as well as eating better. Maybe the uti was having more of an effect than we thought or maybe it was just a better day. But it certainly made me feel better.
    Is it normal however to also feel a strange sense of Oh No because it's another rollercoaster of emotions, I'd accepted I was losing dad and I'm not sure I can cope with the hope I'm not. I'm not even sure this makes sense.
     
  6. Shazedge

    Shazedge Registered User

    Nov 11, 2015
    27
    This all makes perfect sense and like you said a roller coaster of emotion. We went through something similar with my dad. One min there was hope then there was not, then they changed his care plan to immobilise him and prepared us for the worse, then rhey were talking of reversing this as wasn't having the desired effect. Then within weeks he seemed to deteriorate and looked at deaths door. A few days later we were told he had eaten quite well, when he hadn't eaten anything at all but tiny bits of ice cream for weeks! Then Just before Christmas he passed away and it all seemed very quick in the end so totally understand your rollercoaster of emotion.

    It's all such a sad and horrible time and emotionally draining...
    I hope you're ok and bearing up, sending hugs xxxx
     
  7. Shazedge

    Shazedge Registered User

    Nov 11, 2015
    27
    This all makes perfect sense and like you said a roller coaster of emotion. We went through something similar with my dad. One min there was hope then there was not, then they changed his care plan to immobilise him and prepared us for the worse, then rhey were talking of reversing this as wasn't having the desired effect. Then within weeks he seemed to deteriorate and looked at deaths door. A few days later we were told he had eaten quite well, when he hadn't eaten anything at all but tiny bits of ice cream for weeks! Then Just before Christmas he passed away and it all seemed very quick in the end so totally understand your rollercoaster of emotion.

    It's all such a sad and horrible time and emotionally draining...
    I hope you're ok and bearing up, sending hugs xxxx
     
  8. wobbly

    wobbly Registered User

    Feb 14, 2012
    313
    Mid Wales
    how are things now Dimelza??
     
  9. Dimelza

    Dimelza Registered User

    May 28, 2013
    130
    Hi thanks for asking. He's really agitated and appears to be in pain so they think maybe another uti although without a sample it could just mean he's had the wrong antibiotics for the one they assume he had.
    It was horrible seeing him for the first time in almost a week. He looked so different. Nothing like dad unfortunately my youngest has been struck down with d&v so I've been Mrs Mop/The Nurse today and I've not seen dad. I wonder if I can visit tomorrow as I've had no symptoms?
     
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,089
    Yorkshire
    Hi Dimelza, please check before you visit, you may carry the virus without having any symptoms and it's potentially devastating for fragile constitutions
    dad's care home called me today to say they have an outbreak and advise I leave it 48 hours before I consider visiting again, and even then to phone first in case there have been further outbreaks
    sorry to seem so negative, I know it's hard to stay away
     
  11. Shazedge

    Shazedge Registered User

    Nov 11, 2015
    27
    Hi dimelza
    I hope your dads situation Improves and he can be rested and comfortable. Such a horrible situation.
    Sending love and strength x x
     
  12. Dimelza

    Dimelza Registered User

    May 28, 2013
    130
    Hi again

    Sorry for only updating here I barely have a minute.
    I've not been to visit dad. My husband felt unwell too so I daren't risk passing germs on.
    But his sister went up and sent me a message to say they've ask the SALT team to assess him for liquid food and they've also asked for permanent antibiotics for his constant UTIs.
    So I'm guessing his swallow has worsened further. Poor man.
     
  13. Dimelza

    Dimelza Registered User

    May 28, 2013
    130
    Hi
    Just returned from the CH. dads really going downhill now and the manager came to speak to us to say she's getting the gp out to him to review his meds, up his pain relief. They've asked for a SALT team referral but they really think he's shutting down now.
    So sad but I'm relieved. I can't bear to see this decline. How you all cope when's it your partner I truly don't know this is killing me :( xxx
     
  14. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,089
    Yorkshire
    I'm just off to see my dad in his care home - he's playing up

    but just wanted to send my sympathy and good wishes to you and all your family at this tough time
     
  15. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,540
    Ireland
    Thinking of you dimelza. It's a very hard time for you. Xx
     
  16. Dimelza

    Dimelza Registered User

    May 28, 2013
    130
    Thank you both. What an emotional day. I'm in limbo it feels. Poor dad. The end can't come soon enough for him. I've told him he can go when he's ready. That we don't want to see him suffer any more. Heartbreaking but I hope he knows. I feel very fortunate that I get more reaction than anyone when I visit.
     
  17. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    Hope you are managing to get some sleep tonight Dimelza - such a sad and difficult time for you and your family. Hope the care home are keeping your poor dad as comfortable and peaceful as possible.
     
  18. Dimelza

    Dimelza Registered User

    May 28, 2013
    130
    Hi gigglemore
    I usually only manage about 5 hours but obviously restless tonight. Going to get up and make some tea.
    The CH are absolutely wonderful, I couldn't ask for more, they genuinely seem to care for all the residents but a soft spot for dad. He's declined so rapidly in the last 8 weeks since he's been there, but they've been in the ball every step of the way.
    Hoping the gp agrees that we are near the end now. I work at the local hospital so I'm going to contact the palliative care team today and see if and when they get involved as I'm sure it'll be different in each area.
    Thank you all for your kind thoughts and words xxx
     
  19. Shazedge

    Shazedge Registered User

    Nov 11, 2015
    27
    Thinking of you at this difficult time and hoping your dad is comfortable, hugs x xx x
     
  20. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    Thinking of you Dimelza and hoping for a peaceful outcome soon for you all X


    Sent from my iPad using Talking Point
     

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