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End of Life Care

14 May 2019 13:09

Hi

My mam was diagnosed with Bowel cancer in November which had spread (only a little) to her liver and lung.  She was told it was incurable and couldn't have an op.  

She started chemo in January and the scan she had 10 weeks later showed it had spread on the liver but not the lung.

At Easter she had excruitiating pain and was taken to A&E & they scanned her & said her bowel had perforated, we were told not to expect her to survive this as she would end up with bloody posioning.  They treated with intravenous antibiotics and after a few days, she perked up and turned a corner and went home,  In the meantime she saw the oncologist who said because of how much the cancer has spread, he was suprised she was here and said it would be weeks instead of months.

2 weeks later she was back in hospital as this time she had pain & was vomitting (bowel contents Sad )  Her bowel was completely blocked hence the vommiting.  Again, she looked gravely ill and after 24 hours was put on End of Life care.

We are now 10days later, she has perked up again.  She is on a constant feed of morphine and has a tube to empty her bowel.  She can drink but no food so is having water, soup, ice cream etc.  She is in hospital and still on EOL care.  She sleeps quite a bit but is very much with us when she is awake

Anyone experienced anything like this - I know its difficult to determine a time, but will she slowly just deteriorate of could things change quite rapidly?  She is clearly a fighter and not ready to go anywhere yet, however its awful her knowing and us that the end is near.

Any advise would be greatly appreciated. 

End of Life Care

15 May 2019 07:04 in response to AshBash

hello 

my dad was put on end of life care but fought it tooth and nail and died 7 weeks later, they only put you on end of life care when they know that the time is coming, they review it every so many weeks i think its 3 months from memory, my only advise i can give you is spend time with your mam, as much time as possible and enjoy the waking lucid moments.. i have some funny memories of dad when he was talking ribbish but very funny .. i just humoured him when he said the neighbour was flashing her boobies at him.. think he had a water infection at the time ... but all the difficult times i also treasure because i was with dad.. my dad was 6ft4inch big power house of a man but in the last few weeks i could lift him myself and im only 5st 3 and not strong at all.. 

they say they sleep more near the end, dont drink and dont eat ... well the day before dad died he drank 3pints of milk so when my sister took over his care i went home to get some rest and thought oh well hes drinking we are ok but he sadly passed during the night while his night nurse sitter was with him, when i arrived after she called me i went over to kiss dad and he had a smile on his face i think my step mum had come for him !! 

you can research EOL symptoms i know i did constantly so i could look out for the signs and dad had a few but no one can predict when the passing will occure so my only advise he spend spend spend time with your mum while she is here Happy 

good luck and i hope your mums final journey is a peaceful one x 

 

L x

End of Life Care

15 May 2019 15:19 in response to AshBash

My mum passed away 18months ago from metastasised Gallbladder Cancer - although she ultimately passed away from a bowel blockage. She too had a nasal tube which my Dad and Brother would asperate her to make her more comfortable - She too was very lucid until the last 4-5days where her sleeping increased and she was not asking for water, ice pops as often although she was having something up to the day before. She passed away very quickly and peacefully with my Dad and I by her side which is what she wanted so I take great comfort in that.

Please try to saviour these moments that you have where you can have a conversation with her and talk about everything and anything. I miss my Mum so very very much and would not wish this disease on anyone.

I do hope your mum is comfortable and surrounded by loved ones when the time comes

If it is possible look to get your Mum moved to a local hospice rather than a hospital as they are better equipped for this stage and very very supportive - I don't know where we would have been without our local hospice

End of Life Care

15 May 2019 17:48 in response to Isteed85

Hi

I'm so sorry to hear that it sounds very simlar to my mam.  We have opted for her to stay in hospital as the hospice near where they live isn't that nice.  The hospital staff have been amazing with her though and she has her own en-suite room, we have an extra bed (as one of us stays every night) and we have put up pictures and taken in plants etc.  

How long was your mum's bowel blocked?  It has been almost two weeks now that she has had the tube in but we believe the bowel has been blocked for about 3 weeks. 

You're absolutely right about it being a horrible disease Sad .  We have had lots of conversations and soemtimes we just sit...  Its so horribly sad Sad 

End of Life Care

15 May 2019 17:52 in response to daddiesgirl44

Thank you so much and I'm sorry for the loss of your dad.  Sounds like he was a character Happy 

My dad was singing the other day when she was sleeping  - it was all a bit funny and that night we were telling her about it and said he would do it all the next day and all of a sudden she came out with 'I'll pretend I'm dead' It was hillarious and lovely that she still had her sense of humour. 

x

End of Life Care

16 May 2019 11:11 in response to AshBash

haha sounds like she is a amusing character too 

there is so many stories about my dad that were funny i should write a book !! 

enjoy your time with your mum and try not to focus on how long and what if because there is nothing we or anyone can do to predict and change what is happening 

 

Lx