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Life-limiting illness

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Is this actively dying?

8 replies

Neverendingdust · 14/08/2022 16:15

Posted before about this family member with stage 4 Oesophageal cancer, treatment was refused after 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 was 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) His pain was under control since having 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.

What is odd is during the few hours he is awake (spread throughout the day in 30 min blocks, at most) he can appear seemingly 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 medical assessment it’s difficult to place where we are in terms of progression.

My question is how long can people survive on just the odd Ensures and minimal fluids? He is extremely thin and is essentially wasting away, is this the gradual decline? Previous cancer death experiences I had were 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:
Starlightunicorn · 14/08/2022 22:10

I've been in healthcare for over 5 years, my mother had leukaemia and got the 6 month prognosis and no treatment other than transfusions, she did have a gradual decline but the end came quicker than we expected.
From my own experiences both working and private it does sound like his organs could be shutting down or that his body is slowing, hell not need much nutrition or fluids because his body isn't in need of them and can't process them effectively.
I'm so sorry you are going through this, it's a really tough time ❤️

Starlightunicorn · 14/08/2022 22:12

To add, it might be worth asking for hospice now so you can spend the time left with him as a friend/relative rather than carer, we wanted this but the end came to soon

Couchpotato3 · 14/08/2022 22:15

Sorry you are living with this difficult situation. It sounds as though your relative needs more effective pain relief - can this be provided at home via GP/palliative care team? Have you had a conversation with your relative about where he would prefer to be? If he is are able to chat during lucid times, he can express his preferences, and it would be kind to ask for his thoughts. Hospice may be nice for him, but it may also prove unnecessary and he may prefer to just carry on at home. It sounds as thought the end is near, but these things are very difficult to predict. He may just pass quietly in his sleep.

SpudsIluv · 14/08/2022 22:51

Not actively dying but deteriorating, I'd say (nurse 20 years). People can slip away quietly or continue for some time with ongoing issues, impossible to predict. Sorry you're in this situation. X

vipersnest1 · 14/08/2022 22:57

I just lost a quite long post.... Anyhow:
Have you spoken to him about how he wants his death to be?

It's an important question and one we (DM and I) had with my DDad. He didn't want to be in pain or feel scared when he reached the point of dying. We made sure he didn't.

That might not be what you want to hear just now and I'm so sorry for you.

Somewhere, somehow, someone is going to have this conversation with him. You might prefer for it to be someone other than you (fair enough if you do - no judgment here from me).

My DDad had a syringe driver in place from the moment we knew he couldn't survive (very nasty circumstances which I don't want to go into here). It kept him calm and relaxed until he eventually passed away somewhere around 36 hours later.

His passing was peaceful, although it was devastating to those of us left behind.

Whatever you do, @Neverendingdust, I'm sure it will be in his best interests.

It's a horrible place to be in, and nothing you've experienced before can prepare you for it. My heart goes out to you. Flowers

Goawayangryman · 17/08/2022 00:33

I am absolutely not a healthcare professional but a friend recently died from the same disease.

I think there is a lot of variability in how long someone can keep going. Not eating, and sleeping the majority of the time sounds like things are declining. Blueish tinge to nails and extremeties, dark or no urine, were things I read to look out for, as regards entering final days.

I hope you can get more hospice support :(

CrotchetyQuaver · 17/08/2022 00:52

I lost my DF to pancreatic cancer last October , 12 days from diagnosis to death. Dad was like this the final few days, sleeping and sleeping, he took to his bed, hardly drinking and a mouthful of food if that. It was all so quick (we'd been told 6 weeks initially) the only real help/support I got was from our local hospice which I got the GP to refer him to when dad was formally diagnosed. They managed to take him for what turned out to be the last 48 hours. Actually that was thanks to a district nurse who turned up with something or other and because I felt he was "on his way" so to speak, I asked her to have a look at him. She was marvellous actually, agreed with me, we came downstairs and phoned the hospice. Then helpfully advised a few red flag phrases that would help get him admitted. This was important as dad had said he didn't want to die at home.

Someone said to me if they are deteriorating daily then they have days to live.

I would agree with PPs that having a conversation about what they would like or not like at their funeral whilst they still can is really helpful, it made sorting out dads funeral so much easier because we knew it was what he wanted.

Wishing you all the best xx

NellyNothing · 17/08/2022 01:21

I'm so sorry you are going through this. It so very difficult.

Personally I wouldn't be asking about what he wants for his funeral or anything similar but I might prompt him to tell me if there is anything he wants to tell me or wants me to do. IYSWIM.

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