1. JoJo2821

    JoJo2821 Registered User

    May 20, 2018
    42
    Hi,

    My mum is nearing the end of her life. She has suffered a great deal this last year, many falls, many infections many scarey visits to different hospitals.

    She has lost her ability to communicate, can no longer walk, or take care of herself in any way. About 5 days ago she stopped eating and now has a chest infection. My siblings and I have decided with the amazing help of the Admiral nurses to let nature take its course and not subject her to anymore burdensome medical interventions.

    Her temperature is now quite high and she is drifting in and out of consciousness. My question is how long can this take? I know it can vary wildly but I don't know whether to just drop everything and be with her constantly or wait for the nurses to call me and let me know when they think her death is more imminent.

    Do any of you have some advice that might help me to manage my expectations?
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,775
    N Ireland
    You are right when you state that this can vary wildly.

    I would be guided by the medical team, although this isn't a guarantee that you will be present at the moment of passing.

    I have read many cases where the person in last stages seems to wait until they are alone before they let go so even if you try to maintain a bedside vigil there are no guarantees.

    I wish you strength and your mum comfort at this time.
     
  3. JoJo2821

    JoJo2821 Registered User

    May 20, 2018
    42
    Thank you so much ....
     
  4. KathrynAnne

    KathrynAnne Registered User

    Jun 6, 2018
    272
    Female
    South Yorkshire
    Sending love and hoping your dear Mum is comfortable and free of pain xxx
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,926
    Kent
    I hope your mother is pain free and as comfortable as possible. It`s a hard time for you. You want her to be at rest and at the same time you will be sad when she goes.
     
  6. JoJo2821

    JoJo2821 Registered User

    May 20, 2018
    42
    Thank you - my real anger is at this crazy system that leaves people who are dying from Alzheimers with very little in the way of support at the end of life ..... we are still waiting for the palliative care team! It's been a week with no expert support ..... why are people with Alzheimers treated differently to others who have terminal illnesses?
     
  7. Baggybreeks

    Baggybreeks Registered User

    Mar 22, 2017
    75
    Scotland
    I hope you managed to get help. It is so difficult to watch someone go.
    My husband died on Tuesday after a few days not able to swallow food then stopped swallowing water for 5 days. Shallow breathing, fast pulse, and unresponsive.
    The doctor prescribed morphine and a muscle relaxant as my husband was shaking and twitching. He also had thrush in his mouth which threatened to choke him, so an anti fungal was applied by toothbrush.
    So my poor man slowly struggled .
    He passed away and I wasn’t there. Care staff were turning him so someone was with him. The Last Turn.
    I am posting this more than a week after your post. I wonder if she has passed away now.
     
  8. Ray96

    Ray96 Registered User

    Sep 29, 2018
    75
    My mother has been on end of life for three months, she stopped eating and drinking, then started again, then stopped, she now just takes liquid food, It was thought that she would not make it to Christmas but has proved everyone wrong. I do shakes, soups, ensure, that sort of thing, crush all her medication.
    She has started this shallow breathing and I am thinking that the end must be near, but then she breaths normally again. Up and down like a yoyo. What I have noticed is that she has become more and more rigid so its quite hard to move her, she likes to cover her face with bedding and it's almost impossible to pull it away from her face. Carers now come four times a day to change her and wash, but it's always difficult because she fights everyone.
     
  9. JoJo2821

    JoJo2821 Registered User

    May 20, 2018
    42
    Mummy died yesterday morning .....
    We were with her for the evening before she died. She had stopped eating and was asleep constantly, we couldn't rouse her at all. The doctor came and told us that if she was going to die we were probably looking at the middle of the week, so my sister and I felt it was okay to go home. We are devastated that we were not with her when she died, missed it by moments.... I can't quite get over that part, that she was alone. I had been praying for her death because this last year has been unbearable to watch, this disease is brutal. I can only now see how it crept into my mum's life almost 15 years ago, frightening her and leaving us her children bemused and sometimes irritated. She had suffered from epilepsy since her 30's and it took a long time for the doctors to realise that the symptoms she was experiencing were as a result of dementia not her epilepsy. Only diagnosed about 3 years ago ..... Our experience of the care system has not been good and it has opened my eyes to the enormous struggle individuals and families face when they they to deal with this disease in particular. Fighting for a diagnosis, fighting for financial aid, fighting for adequate support and respite, there is still too little support and good advice. The Admiral nurses helpline has been my absolute life saver, always so understanding, sometimes the only people giving it to you straight.
    Much love to all of you still on this journey.
     
  10. Lady M

    Lady M Registered User

    Sep 15, 2018
    269
    Female
    Essex
    Your beloved Mum is at peace!
    You will also find peace, intime.
    As a daughter I know how it feels when Mum goes........but she will always live on in your heart.
    XXx
     
  11. lis66

    lis66 Registered User

    Aug 7, 2015
    226
    So sorry for your loss ,I agree very little help out there for carers on this long heartbreaking journey xxx
     
  12. canary

    canary Registered User

    Feb 25, 2014
    9,677
    Female
    South coast
    (((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))) @JoJo2821
    I wasnt with mum when she passed away either. I had stayed with her for 3 days and also the nights camping beside her, but then I had to go home to check on my OH and she passed away within 10 mins of me leaving. One of the older, very wise carers told me that she had seen this many times, that the person who is dying seems to wait for their relative to leave - sometimes to just go to the loo - and they pass away when they are alone. She thought that it was because they didnt want to pass away in front of their relative,
    The important thing is that you were there during her life, the last few minutes are not so important
     
  13. Ray96

    Ray96 Registered User

    Sep 29, 2018
    75
    Yes I have heard that as well canary, it seems to happen quite often.

    I'm really sorry to hear about your loss JoJo.
     
  14. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,402
    south-east London
    I am so sorry for your loss @JoJo2821. Wishing you strength at this sad time.
     
  15. KathrynAnne

    KathrynAnne Registered User

    Jun 6, 2018
    272
    Female
    South Yorkshire
    Sending my condolences @JoJo2821. Your Mum is now at peace and free from pain xxx
     
  16. JoJo2821

    JoJo2821 Registered User

    May 20, 2018
    42
    Thank you all for your kind words and wisdom .... we have been gathering all the photos and video of her throughout her life and this helps to see that although the Alzheimer's comes to dominate a lot of their final years it doesn't define them because it was only a part of their story, not the sum total ....Mummy had many, many joyous times and she never lost her ability to get her greatest enjoyment from the simplest things. sunny days, beautiful trees, flowers, birds, a good cup of coffee or a glass of wine, and above all time spent with her loved ones. That stayed with her right up until the very end. My sincerest love and kindness to all of you who are going through similar experiences, never miss an opportunity to tell them you love them, hug them, hold their hands, do it all now, you wont regret it and it will be such a comfort xxxxxxxx
     
  17. hilaryd

    hilaryd Registered User

    May 28, 2017
    84
    Wise words @JoJo2821, and condolences for your loss - mothers are special, and an especially hard loss. You're so right about all the fighting, but hold on to those wonderful memories you describe so beautifully above - the 'real' mum and the good days. And, as Canary said, you were there for her when it really mattered, and you can be proud of that. Wishing you well xxx
     

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