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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To wonder if this is actively dying? Cancer related

55 replies

Neverendingdust · 14/08/2022 18:42

I originally put this on a quieter board with no response so I’ve added it here instead for broader perspective.

Posted before about this (66 yr old) family member with stage 4 Oesophageal cancer with lung mets, treatment was refused after receiving 6 month prognosis (at almost 4 months now). I’m just wondering how others who have experienced this or work in the field would evaluate his current condition.

He had an infection a few weeks ago which has since been seemingly controlled by antibiotics. This last 2 weeks he has started sleeping between 20-22 hours of the day, shutting himself away from others, has minimal urine output, barely eating or drinking anything even in this heat (1-2 Ensures per day, 2 cups of tea at most and very little interest in anything more, the odd ice lolly every other day) His pain was under control using a patch but is now showing signs the dosage may need to increase.

He sleeps very still, you could be forgiven for thinking he had died by the way he looks, his mouth remains open and breathing is very subtle, he no longer snores too which is strange. His hands and feet are pale but not mottled although his overall complexion is a greyish tone.

What is odd is during the few hours he is awake (spread throughout the day in 30 min blocks, at most) he can appear relatively normal, chatting and making jokes for brief moments but soon becomes fatigued again. He is mobile to a point albeit very wobbly.

Hospice at home team are visiting in the mornings but without any regular medical assessment it’s difficult to place where we are in terms of progression.

My question is how long can people survive on just 1-2 Ensures and minimal fluids? He is extremely thin and is essentially wasting away, is this just the gradual decline? Previous cancer death experiences I had were very different situations and not based around malnutrition.

What other signs should we look out for and at what point would you request hospice admission?

OP posts:
debbiedora · 14/08/2022 23:08

I would highly recommend hospice nurse Julie on tic tok she educates ppl about what to expect at the end of life and signs a loved one is actively dying. Sorry you are having to go through this experience and I hope the end is as peaceful as possible

For · 14/08/2022 23:47

It does sound like it. I recommend reading The Final Act of Living by Barbara Karnes it helps understand what to expect. Excellent book.

Neverendingdust · 15/08/2022 10:46

@IsTheOffDutyDoneYet he’s on weekly visits palliative obs visits and he has the liquid oramorph, I think it may becoming a struggle to swallow this so perhaps the driver could be a good idea in the coming days. His wife is having a visit to the hospice soon so hopefully this will all be discussed but I’ll list and mention what you said.

Thank you so much again.

OP posts:
Straysocks · 15/08/2022 11:03

I haven't read all of the posts, it's still all to raw from nursing my Mum at home, but want to say it does differ from person to person somewhat. I know people can gradually decline and then go suddenly but it wasn't like that for us. Mum carried on for 8 days without food or water and stayed very, very warm to the moment she died. I'd encourage an 'End of Life' diagnosis because, if you're in England, it comes with a lot more and super-responsive care. District Nurses, hospice palliative care Drs and nurses, very helpful equipment, pain management, GP response, pharmacy response, CHC funding all become available quickly and this helps everyone involved.

From this side a year on I have tremendous comfort in our calm, responsive togetherness at in those last few weeks - though at the time it felt like an eternity and we willed the end to come for her. It feels really like an honour to have been part of her departure from this world and I'm thankful I could provide for her. Hold on, OP, the end is coming. There are people who manage this every day in their jobs, let them guide you and never be afraid to ask them to help.

Sleepyblueocean · 15/08/2022 11:07

My mil was like this about 5 days before she died. About 3 days later she slept virtually all the time and didn't want to drink anything and was then on high amounts of pain relief. It was very obvious she was dying. Her breathing changed in the last 24 hours and then again just before she died.
My aunt was as you have described for several weeks. One morning she got up and ate and drank a small amount and then went back to bed saying she needed a nap and some time by herself. She died in her sleep shortly afterwards.
I hope things go peacefully for you all.

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