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APPROACHING END WITH MUM : EVERY DAY IS DIFFERENT

Discussion in 'End of life care' started by Jezzer, Jul 5, 2018.

  1. Distressed55

    Distressed55 Registered User

    May 13, 2018
    67
    I can't believe you were put through that, @Jezzer . All credit to you for not caving in, and doing what your mum wanted. I'm fairly certain that I wouldn't have been that strong in the same circumstances, and I'm not surprised that you feel at such a low ebb after that experience. Hopefully you will be buoyed up by the support here at TP, and know that we all think you're marvellous.
     
  2. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Hi there. I certainly do feel buoyed up by the lovely folk here on TP. Thank you so much for your kind post. I didn't feel strong believe me but I do believe I was receiving help. xx
     
  3. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Hi again Jan :)
    I bet it’s typical of you to take such a positive and caring approach, reassuring the nurse on duty, talking to the manager and playing your part in ensuring that files are up to date etc....whilst at the same time backing a complaint to EMAS on the substantive issue. Well done my friend!
    I have to say I’ve been quite low myself for a raft of reasons, mostly not to do with Mum, although the emotional pain from her condition is, as you know, ongoing and underlies everything. I’m okay though, a gradually pulling myself up by my bootstraps :rolleyes:
    Love and hugs
    Lindy xx
     
  4. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    I'm sorry Lindy to hear you have been so low. Whatever has caused you distress, the ongoing condition with your poor mum is also always there as you say. The stress can feel so overwhelming. Please look after yourself. Much love and hugs xxxxx
     
  5. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    Oh my god Jan @Jezzer just read your account of what happened the other week & I am appalled! You really do need to lodge a complaint with EMAS that is just not on & to be spoken to & bullied.
    Unfortunately in my personal experience with my mum, it is well known that all these seemingly joined up organisations do not talk to each other.
    My mum also has a DNR in place & one that was discussed with her GP not too long ago - so if she were to have a stroke or heart attack then it should be down in her notes what to do or not to do.

    I think she just lives for when I visit bless her. Sending you massive hugs Jan xxxxx
     
  6. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Hello my friend - been meaning to get in touch with you but you've beaten me to it. So good to hear from you. I've lodged a complaint but I'm not holding my breath. Mum may have end stage dementia but when we walked into her room, there was real fear in her eyes. Not only were they ignoring her wishes, they were scaring her too. They didn't seem to have any knowledge of dementia. Not even basic common sense. Unforgivable behaviour on so many levels. There is little we can do for mum now other than be there and hold her hand but we can, and will, ensure her final wishes are adhered to. I bet your lovely mum is delighted to see you. Thank You for your message and the hugs. I'm sending you massive hugs too - here they come ....... Xxxxxxxx
     
  7. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    Bless you lovely Jan! Oh I don’t know if you can recall what a complete nightmare I had when my mum was in hospital. I felt like I was nagging & chasing all the time. This is why I ended up at PALS & believe me I’m not a complainer but when something is unjust & not right then I will sort it out. I couldn’t believe the incompetence of it all. It’s no wonder that we all feel so stressed in the light of this dementia battle. Your poor mum..... honestly I feel so outraged for you xxxxxx
     
  8. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    I do remember, yes. Awful time for you and your lovely mum. Im not a complainer either but like you, if its wrong, I have to act. You are so right, no wonder we are so stressed. We really dont need this do we? We both love our mums though and so we will keep on fighting but we shouldnt have to. So much needs to change. Take care xxxxx
     
  9. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Hi folks
    Not posted for a while really because there isn't a great deal to say. Every day I sit and watch my darling mum as her mind continues to deteriorate. She continues to call out the same thing over and over again. One unexpected thing this morning though, I was stroking her forehead when she said "my little girl". Then back to wherever her poor, diseased brain takes her. Not so long ago this would have made me cry but not today. Am I becoming numb to this pain? Am I shutting down? I don't know. All I know is the cruelty of this hateful disease is relentless. Sorry this is bleak but bleak is all I see. We just keep on doing what we do because we love our mums, dads, husbands, wives. At least my love for mum remains as strong as ever. Take care. Jan xx
     
  10. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    454
    Hi Jan @Jezzer
    It is so hard isn't it?
    I don't think you are becoming 'numb to pain' or 'shutting down' - rather (as many of us have to do) you have come to the point when you merely accept these heartbreaking changes as yet another step along the long, sad path for your Mum and yourself.

    Personally, I am trying hard to get into the mind set, that whatever is happening with my Mum on her dementia journey, and as upsetting as it may sometimes be, at least she is still with me. No matter how she functions, what she can or can no longer do, and despite not being my 'Mum of old', nor displaying the wonderful characteristics that I want to remember her by - she is still my Mum. I love her to bits. And goodness knows, she's brave. I wouldn't want to be walking in her shoes.

    Look after yourself.

    XX
     
  11. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Hi Toony
    Thanks for your message and for your perspective on your own mum's illness. Like you I love my mum dearly and she is, and always will be my mum. I recall, several years ago, mum and I visiting a relative who was almost identical to the way mum is now. Mum said she prayed she would never be stricken in such a way as it was an existence rather than a life. So, exactly what she dreaded has happened. I hope this goes some way to explaining my feelings. Please take care too. Jan.
     
  12. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,629
    North West
    I think you have the right attitude Toony Pony. I hope your mum continues to be with you for a while yet. I know some PWD reach a point where their loved ones understandably pray for their suffering to end.
    But other PWD suffer less and still seem able to appreciate some aspects of beimg alive. And, even though we all know that dementia is a one way road, it can be an enormous shock to loved ones when they eventually pass away.
    My wife died fairly peacefully. She was comatose for the last few days. In the last few hours, her breathing became more laboured and, eventually, there were longer and longer pauses. Then we realised that she had stopped breathing altogether. She was at peace I think.
     
  13. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,629
    North West
    #433 stanleypj, Sep 5, 2018
    Last edited: Sep 5, 2018
    ERROR
     
  14. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thanks so much @Carmar. As always, your words make such sense and
     
  15. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Whoops done it again! ..... help me understand. I guess I've not really considered that as my darling mum is changing, so am I. With Love Jan xxx
     
  16. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,954
    Female
    East Midlands
    Oh Jan @Jezzer I know what you mean as regards changes etc or not much to report. Same as my mum really to be honest. I think you just become used to the new “normal” just as I do & maybe a bit of your own survival mode kicks in. It must have been a lovely moment for you to hear your mum say “ my little girl “ as ever sending you big hugs xxxxx
     
  17. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thank you so much. Love and Hugs. Jan xxxxxx
     
  18. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
     
  19. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Early visit today as am at hairdressers shortly. My one indulgence! Mum fast asleep and looked so peaceful that I didn't attempt to wake her. As so often happens, a little smile kept appearing on her face so I pray that maybe, just maybe, she is experiencing happy thoughts or memories. Who knows? Sending love to you all x
     
  20. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    198
    Female
    Ilkley
    Calm and settled and you able to have a little me-time, that's good xxxx
     
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