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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. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thank you. My mum has been in a nursing home for 2.5 years. She is end stage and I am honouring her wish to remain in the home and be made comfortable when the time comes. Everything is in place in readiness for this. I have always fought for my mum and always will if necessary.. She is receiving wonderful care.
     
  2. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    I replied to you on my thread Lovely Jan! Thank you so much for asking & for cheering us on.
    My mum always seems happier when we say we have had a good day & tells me that I take after my dad who was also self employed for many years. That’s her bit of clarity before she asks what I do again!
    Oh @Jezzer - I have never heard my mum swear really badly but she has no filter with the dementia & calls the staff at the care home & the residents. She thinks a lot of the residents are mad & she is normal. God help us, sometimes it is quite funny how she goes on so I know what you mean. Our favourite carer was there a bit longer today & she is always having banter with my mum. Xxxxx
     
  3. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Have read your reply on your thread, Thank You. Nice when carers have this banter. Mum can't reply much but it makes her smile xxxxx
     
  4. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Just popping in to say I am thinking of you @Jezzer and all the contributors to this thread. I smile and agonise along with you all.....it's so different every day, isn't it? (Just remembered that's the title of this thread......)

    Didn't manage to see mum today but saw her twice over the weekend. Will try to get round to posting on mum's thread.....things change and yet don't change, I know you understand.

    Love and (((hugs)))
    Lindy xx
     
  5. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Hi Dear Lindy
    Thank you.
    I do indeed understand. We keep battling on don't we? Hope you are as OK as it's possible to be under the circumstances. With much love and hugs xxxxxx
     
  6. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Hello there. I just wanted to apologise as I forgot to say in my reply to you that I am sorry you lost your dear mum. I am sure you gave her all your love and care during her illness and were a wonderful daughter. And now your husband has this cruel disease and once again, you are caring for a loved one. I am sure you will ensure your husband gets the best possible care. Sending you love and thanks Jan
     
  7. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Well my Darling Mum was very vocal today!!!! Most of the staff now know who the names she calls out belong to and a cleaner asked me if one of them (a sister) used to be naughty because "your Mum keeps telling her off!" I replied this particular sister was a bit of a rebel as a young woman, and although the elder of the two, Mum worried about her and "mothered" her! Ah, all explained! Lots of smiles particularly when I stroke her forehead. Left feeling sad, as I always do, but glad she is somewhere happy. Love to all Jan xx
     
  8. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Mum sound asleep this morning and she looked pale and exhausted. A hand- holding visit in which I told her how much my brother and I love her, as I always do. There was a Bird of Prey demonstration in one of the lounges so I called in to look as I was leaving. Mixed feelings here as I believe wild creatures belong in their natural environment. However I saw manfred the Vulture and a Little Owl named Luka who was gorgeous and I stroked his back. Beautiful. Last year mum was doing the same and thoroughly enjoyed it. So sad to see how this illness has changed her. She's barely eating and is so thin. I'm not going to post for a little while folks. Sending Love and Hugs to you all. Jan xxx
     
  9. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    198
    Female
    Ilkley
    Thinking of you and your lovely mum Jan,. Hope things can be as calm as possible. Sending love and a hug right back - Julie xxxxxx
     
  10. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    So sorry to hear that your mum seems exhausted and pale Jan @Jezzer :(
    Will be thinking of you, your dear mum and your brother and sending you love and (((hugs)))
    Take care
    Love
    Lindy xxx
     
  11. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thanks @YorkshireLass and @Lindy50 . I'll be back on TP soon but signing out for now. Sending love and hugs to you both and your mums. Take care xxxx
     
  12. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    @Jezzer Jan - please look after yourself lovely lady & I send the warmest wishes & love to you & your mum. Bless her. Xxxxx
     
  13. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Morning all.

    Firstly, apologies in advance for what I'm about to say. It's been bugging me for ages and since TP is a forum that allows us to "vent" or "rant", thats what I'm going to do. I had thought about starting a new Thread but quickly changed my mind. Of late, there have been a few threads on TP that have caused great distress, veered widely off track and ended badly, helping no one concerned with this disease. This is MY personal view, I take ownership for it and there is no requirement for replies. Please just allow me to rid myself of this:

    " Journey". Oh how I loathe the use of this word when describing the horror that is this disease. My mother is in what seems an endless "final stage" of this disease which I find almost unbearable to witness. My god, how she would hate having her bottom wiped, vomit cleaned up etc and hearing herself call out nonsense all day and night. She is not, nor has she been, on a (I want to swear but am not allowed though god knows I reckon this warrants it) a "journey". This is not the stupid X-factor or Strictly Come Dancing where contestants gushingly describe their stupid "journey". This is and has been, for my precious, loving, kindly, mother, sheer hell. She has a progressive, terminal disease that is eating away at her brain and which has robbed her of her dignity. "Journey" .Really everyone? Really? No, no, no. Dress it up all you like, if you must, but don't insult my mother nor her loving children. And don't tell me its just a "turn of phrase" . It's a bad, bad choice if so. This bit is deeply personal and I share it hesitantly but share it I will. My only consolation is my firm and unshakeable belief that when mum's heart beats for the last time, a new home awaits, free of all ills, full of eternal joy. God knows she has earned it.

    "God, she's angry this morning" I can hear some say. Yes I am. Oh yes, I am.

    I repeat, this is MY personal view. If you don't like it, you dont like it.

    Thank you for letting me offload.

    Jezzer.
     
  14. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    198
    Female
    Ilkley
    Hi Jan, you have been in my thoughts this week and when I realised you had posted today I thought the horrendous suffering was over. I endorse your every word. Maybe someone who has no experience of the horror that is Alzheimer's would describe the terrible situations we are in as such a "journey". They need to open their eyes and connect with us all. On Friday (a particularly awful day for mum and me) I wanted to run outside and scream at anyone who might just listen. I wanted to storm parliament and drag the MP's into the care homes of this country to witness the real world. To add to it all I arrived home to find the monthly invoice for the thousands of pounds needed to keep my mum existing in this torment and suffering. Sending an enormous hug to you and your darling mum xxxxxxxxxxxxx Julie xxxxxxxxxxx
     
  15. Distressed55

    Distressed55 Registered User

    May 13, 2018
    67
    I completely and wholeheartedly endorse your views, dear @Jezzer.

    My poor dad, who endured a hellish time serving in the Second World War, deserves far better than what he is currently going through. All our loved ones do. And like your beloved mum, he'd be horrified by what's happening to him, and what we are forced to witness.

    I'm glad that you have a belief to comfort you. At the risk of upsetting you, I hope for a swift passing for your mum and my dad.
     
  16. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thank you Julie. I send my love and many hugs to you. I am so sorry about your poor mum Love Jan xxxxx
     
  17. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    You haven't upset me at all. I'm so sorry about your dear Dad. He absolutely does deserve far better. This is not a life is it? With Love and Hugs Jan xxxxx
     
  18. kindred

    kindred Registered User

    Apr 8, 2018
    2,179
     
  19. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thank you my dear friend. This afternoon's visit was awful. I just don't want to talk about it. I know you will understand. All love. Jan xxxx
     
  20. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Dear Jan @Jezzer
    I’m sorry you had such a bad visit today and totally understand your wish not to talk about it. I too often find my visits to Mum too painful to derive any benefit from discussing them.

    I understand also how you feel about the sheer hell of these last stages, and your anger at the way society in general turns a blind eye. I agree too with @YorkshireLass.

    Yet.... my closest identification is with what @kindred says “my personal, heartfelt belief is that while consciousness gives the sufferer even a small amount of pleasure, then we as humans help to maintain it. After that, I do not know why we do, except that the ethical and accountability problems are too enormous”. So, like you, I keep holding mums hand, murmuring poetry to her and hoping there is some meaning to it all.

    As to the use of the word ‘journey’, sadly my thread about Mum is called ‘Mums Journey’ . I have been thinking for some time that it is too light and banal to encompass the situation.....but I started it going on five years ago, when Mum was in the community and it didn’t seem so inappropriate. The fact is that I don’t watch reality TV, so to me it is about mums journey through life, and it doesn’t have any other connotation. I accept that in today’s society, though, and given mums progression, it doesn’t really fit the bill.

    Crazily, this has upset me a bit, but I like the continuity of mums thread so after consideration, I doubt I’ll change it.....though if starting now, it would be called something different.

    Love and hugs to you and I hope tomorrow is a better day for you and your mum.

    Lindy xx
     
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