Having a bad day

Discussion in 'End of life care' started by Red66, Jul 26, 2016.

  1. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    It's hitting me now, Dad is only having spoons of food and fluid. He may perk up again, he has in the past. You will all understand the ups and downs of dementia and will know exactly how I feel when things are bad, I feel like the end is on its way for real this time. I have hope that he will live, but what for?? To stay in a bed, wearing a nappy. My Dad left me in November but I can still look at him, even though he is skin and bone, but we still get that glimmer now and then. That's me being selfish though, still wanting him here. I still feel so bad that I have spoke with Consultant and sort end of life meds, but I know full well thay is to help him and put him at peace. Talk about Jekyll and Hyde! Crying alot today. Feel rubbish.
     
  2. Leswi

    Leswi Registered User

    Jul 13, 2014
    120
    Bedfordshire
    #2 Leswi, Jul 26, 2016
    Last edited: Jul 26, 2016
    I know how you feel. Mum became bed bound after a fall 7 weeks ago, she stopped eating solid food 3 weeks ago and now only has small amounts of squash and milk based thickened drinks. She can barely speak, not move herself, doubly incontinent, sleeps most of the day. We were told to expect her to pass away a couple of weeks ago but she is still with us. Part of me is wanting her to just go in peace but another part is wanting a miracle to happen and let her stay with us. We have got her at home too which in some ways helps but in others it is hard to see everything. Every day wondering is it the last? Keeping them comfortable and being there is all we can do really.
     
  3. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    I have no answers, but I do understand exactly where you're coming from. I effectively lost my Mum 2 years ago and last year she wasn't expected to survive another twelve months. She was eating poorly losing weight etc, yet over the past 9 months she's 'improved' to be reinstated her medications and physically she is in perfect health again. Mentally of course is a totally different affair.

    So I have to wait till the next deterioration and go through all this again. I spend much of my days crying for her.
    Everyone is so positive, "At least she's warm and cared for." But for my mother that would not have been enough but would be 'second-best'. She was always a perfect or nothing type and she would not consider her life to be 'living'. If she could concentrate for long enough to get a thought together.
     
  4. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,469
    Ireland
    Thinking of you, Red. It's a horrible time for you. And lemonjuice and leswi too. It's so very hard, watching and waiting. Desperately wanting their suffering to be over, and yet....
    xx
     
  5. beverrino

    beverrino Registered User

    Jan 12, 2015
    1,111
    so sorry for every single person in this situation. Grieving for the living is so very different. My mum is quite fit physically, though doubly incontinent, and she is going through a bit of an 'up' spell at the moment, which is nice to see.
    Although I keep for some reason telling myself she is good, sometimes it just hits me like a bolt out of the blue and I constantly worry how quickly things change.

    Dementia is a living hell and although I know my mum could be a lot worse, its painful losing the one she used to be sometimes and trying to stay positive at the same time.
    I tell myself I should be thankful that I still have her but at the same time, I know how trapped she is.

    sending hugs to everyone reading this who really needs a hug right now xxxx
     
  6. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    414
    Glasgow
    I'm with you all on this awful journey. I can't give myself peace, even when dad is stable. Just waiting for the next infection. I've given up trying to understand why dad can speak a few words one day, none the next..or why he can eat a yogurt one day, just cough and choke the next. My phone is always by my side. There's a cloud over everything that should be good. We're all just stuck following this terrible path, with the ones we love who are suffering this illness. Wishing you all strength. X


    Sent from my iPhone using Talking Point
     
  7. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    Thinking of you and your family, hugs xx
     
  8. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Could have wrote that myself. No words tonight and a temperature of 38.6 but he had already had his quota of liquid paracetamol. Phone always by me but sometimes you feel more on standby and now is one of them. Didn't want to leave him tonight, he didn't even have energy to cough. Just crazy. Been crying alot today and now I just feel numb!! In a daze. Must be shock. You guys are going through bad times too so thank you for your kind words. Big hugs to all xx
     
  9. fenellawriter

    fenellawriter Registered User

    Jul 22, 2016
    13
    Wivenhoe Essex
    I can imagine how hard it must be for all of you. All you can do is your best - and hope the patient isn't aware how grim things are. Good luck.
     
  10. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    How are things going for you and your dad, I haven't seen you on here for a few days, hope all is well
     
  11. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Hi Evie, thanks for taking the time, you're going through some pretty rotten stuff yourself. I think an infection is looming. Dad was quite croaky last night, and even more hoarse tonight. I don't know. Gave him his thickened fluids last night and literally choked him, he went beetroot. Had to press the buzzer as I thought he aspirated but he managed to get his breath. Tonight when giving fluid it just kept bubbling in his throat and he didn't have the energy to cough. It sounds like his throat is burning him, if that makes sense and his chest. My anxiety is dreadful, so upsetting. I keep saying it's not long and he has surprisingly lasted months, but I feel that once the final infection sets in its curtains. He is 6 stone 8 now. Skeletal. So sad. If it is an infection and it's viral antibiotics won't work anyway. Waiting for phone yet again. ....
     
  12. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    Oh Red, my heart goes out to you. This is such a cruel, cruel disease. We can only hope and pray that peace comes soon.
     
  13. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Just nipped to see Dad and he is even more croaky. Doesn't seem too good at all. They tried to give him pureed breakfast but stopped at 3 spoons as he was choking too much and concerned he would aspirate. They have arranged for Doctor to come out shortly as he seems poorly. They are going to ring me with an update before I go in later.... Back to waiting for phone to ring!!
     
  14. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    #14 Evie5831, Aug 2, 2016
    Last edited: Aug 2, 2016
    :(
     
  15. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,469
    Ireland
  16. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Doc came in and said that his chest is clear and that the hoarse/croaky throat is down to his dementia???? Can't see that? Anyone ever heard of that before?
     
  17. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    414
    Glasgow
    Hi Red. As u know, I'm with you on this living nightmare... I have heard this before from a visiting GP, and I'm sorry to say my dad was in intensive care 7 hours later with pneumonia- back in January. He said dad's chest was 'clear', I said to the charge nurse at the time,.. 'I'm shocked to hear that.' I hope you don't mind me sharing that with you, I'm sure your dad isn't in the same position. I just mean, don't doubt yourself, if you're not happy tomorro, get another doc back out. You know him best. I don't blame the doctor who saw dad, just think I saw something before he did?? If that makes sense. Stay strong. Xxx


    Sent from my iPhone using Talking Point
     
  18. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Thank you for sharing Gwendy very kind of you. Dad was awful when I saw him earlier and then I somehow managed to get a yoghurt and 600mls of thickened fluids down him. NEVER done that before,but he had had 3 spoons of dinner all day and a yoghurt so he clearly needed it. His mouth is so dry. The staff in these nursing homes just don't have the time to stand with their residents to give food/fluid to people who struggle with their swallow. It took me 2 hours ish to get that down him!! Worth it though. Lots of coughing which frightens the life out of me!! He actually perked up a touch, but not holding my breath. Thank you for sharing again. How is your dad getting on Gwendy?
     
  19. Kjn

    Kjn Registered User

    Jul 27, 2013
    5,835
    Gwendy well done for getting what you did down dad.(hug)
    Red (hug ) also
     
  20. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    414
    Glasgow
    Hope you're doing okay,Red. And your dad too. ❤️️X


    Sent from my iPhone using Talking Point
     

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