Losing my mum

Hello

Mum has end stage HCC (liver cancer) and is getting worse by the day. Her eyes are very rheumy and her skin and eyes are jaundiced and she's very confused and is not really lucid at all anymore.

She says she's not in any pain so I have stopped her oromorph in the hope it was that that was causing the confusion, but she's still very confused and restless. 

Does anyone have any experience of this and of how long mum may have left? I am afraid to sleep in case she goes in the night with no one by her side.

Thanks

  • Hi, I'm sorry about your mum and just had a flashback to December when my mum was going through the last stages of blood cancer before passing away on 6th January.  I felt helpless and obviously inexperienced about what to expect so I spent time googling a checklist [sorry if this sounds military but because the palliative nurse wasn't very forthcoming on symptoms and what and when to expect it, I felt I had to take control myself].  So my personal experience of knowing how things were panning out were, to start with, confusion [going into the bedroom instead of the bathroom], lots of phlegm/secretions in the throat [which sometimes made her retch], lack of appetite and imability to swallow much [had to crush her tablets before liquid morphine]. And a great deal of tiredness, constantly sleeping, sometimes even nodding off mid sentence or mid spoonful of food. My mum too said she wasn't in as much pain and in fact her morphine dose was drastically reduced which did help a little with sleepiness and confusion. But being around my mum daily I could see a change in her and like you, every time I had to leave to come home to my family [luckily only a short few miles away] I was worried she might slip and fall or the next time I came back she mght have passed. The one thing I did was everytime I had to leave her for a few hours, I always said I was coming back and I loved her [we were not a lovvy/huggy family but I never wanted to have regrets about not saying it]. And every time I came back, I'd always shout 'Hi mum it's me' so she knew it was me if she was still confused/sleepy. So after about 2 weeks of the above symptoms, I practically begged my local Hospice to admit her as I knew she was at the end of her life and even with my help over Christmas, with no medical back up at home, it would have been a real struggle to manage her advancing situation. Luckily they admitted her on Christmas Day and helped to 'manage' her condition with IV pain relief, suction for secretions. The final stages, in addition to the ones she had at home] then were hallucinations [waving to someone not in the room], oxygen levels struggling without a mask to boost them, blood test revealing her kidneys and liver were starting to shut down and then finally 24 hours later, mottling of her hands [like chillblains], cold feet and her breathing became more laboured [and rattlely as the secretions hit the back of her throat].  She passed 12 days after being admitted to the Hospice, only with their care did she, I believe, last so long. If she had been at home, I suspect things would have been much different, more painful and less dignified. One thing I did learn throughout all of this horrible situation is, listen to your gut. As a daughter, without realising it perhaps, you will sense things no medical professional can. I knew my mother needed a hospice, I knew the changes in her condition and persona, I knew when she was about to die and I was there holding her hand right at the end. I have no idea if any of this is helpful, I am wishing you strength in the coming days/weeks and peace for your mum. xx

  • Im so sorry to hear about your mum, i know exactly how you feel. We have recently found out my mum is terminally ill with a very rare cancer at the base of her spine, she is only 54. it has now spread to her lungs, bowel, liver and gallbladder and she is deteriorating quite quickly. The doctors have tolds us it could be days, weeks or months which is so hard to deal with.....just not knowing what will happen day by day is heartbreaking! 

    Im only 31 and getting married in 5 weeks....my mum is my soulmate and best friend and i have no idea how i cope when she is gone but you must teasure everyday and even though it might seem hopeless, im sure your mum will take comfort knowing you are there with her. The best thing i can say is to take one day at a time and make sure you look after yourself.

     

    take care

  • Hi Losing-Mum, I'm afraid I can't offer any advice, but it sounds like we are in a similar position with our mothers. Except you are there for your mum, where as mine is 120 miles away in a nursing home. Have been doing the round trip each weekend since Xmas, and can see the deterioration each time I visit. Mum is very confused now (although she has dementia as well, so its hard to tell if its that or the morphine.) Has lost her appetite, and can't really swallow well. Only manages a few sips of tea before sicking it up (although shes on anti-sickness pills for the morphine) She was on patches for the pain, now on liquid morphine. Is desperate to see people, but then tires within 10-20 or so mins of them being there. Also can't recall seeing people, so she is asking over and over to see my daughter, who she's seen weekly, but then says she hasn't seen her for months. The hospice say its very hard to put a timescale on things until the very end; but perhaps a she has just a few weeks now.... How old is your mum? Mine is 92 now. I get so angry when people say 'oh well' shes had a good life etc. I know that, but watching someone die in slow motion like this is awful; doesn't matter if they are 92,72 or 52! Wishing you strength in the coming few weeks...