To wonder if this is actively dying? Cancer related

[Neverendingdust]

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?

My father died of lung cancer a few months ago. His final decline was very rapid (over a couple of days), and looking back the main signs were mottled extremeties, lack of sensation in his feet and confusion.

It's very difficult to predict - some people go faster, some much slower than expected.

Why would you want him to go into hospital though? If he's managing at home why not stay there?

My father died at home, and it was one of the few bright points in an otherwise awful situation.

I'm so sorry you are going through this.

I’m sorry for your situationWhen MIL was dying from a progressive disease she slid into a deep sleep barely waking at all, she took odd bits of fluid. When she stopped waking lucidly she began to show increased signs of distress and needed first morphine injections and then a syringe driver. From that point, which was a Sunday she took no fluids at all. The doctor said he’d known people last as long as ten days but she died on the Wednesday.

So judging from your description he isn’t quite at that point yet. I hope he has a gentle ending.

It sounds very like the same way my mum went. Right up until the day she died she was in good spirits in her awake times. And then she went to sleep and didn't wake up again. By then she was on very high doses of morphine, barely drinking and not eating. Her system was shutting down.

I'm very sorry you are going through this and I wish your relative a peaceful passing.

So sorry you are dealing with this OP.

It sounds to me more like a winding down, like that of my mums final few weeks. What I would call actively dying were her final 1/2 days though, particularly the night, when she was often clawing at the bed or making some strange (sorry) death rattle like noises. Her beautiful hands were mottled and cool and she seemed with us but not with us IYSWIM.

When she did finally die it was at dawn, and particularly after such a distressing night the silence and light in the room was extraordinary. I hope you too find a moment to be at peace with your loved one even at this terrible time.

💐

So sorry you are going through this.

Nutrition wise, we humans can survive for a very long time on minimal intake when we are not active. My relative at end of life survived for 10 days on a tiny sip of water a day and no food.

Expect morphine-based pain relief to lead to more sleeping. If the GP or health professionals say he is on End Of Life care this can open more opportunities. A hospital style bed brought to you with a special air mattress that prevents sores , visits from the community nursing team, a syringe driver for morphine and drugs to prevent secretions in the throat.

What is being done about increasing the pain relief?

This is such a difficult time. We played music, read books aloud, chit chatted.

In our area hospices are so under pressure that people only get a place for the last couple of days, and we decided to spend those at home.

But everyone’s circumstances are very different.

It does sound as if your relative is on a downward slope.

My dad died at home, he didn't have cancer but died of pulmonary fibrosis, therefore pneumonia, so I'd imagine the final stages are similar. I'd agree with a previous pp, you're probably not at the very final stages, based on our experience. We had home hospice care & they were very good at making sure we were aware when he was reaching his final days. I feel that the syringe driver is a sign that the end is approaching.

We definitely didn't regret having dad at home. It made everything so natural. The kids wandered in & out to him, we put the match on & sat there with him chatting. We had a night nurse from hospice service for his last 2 Nights. We were well supported & dad wasn't in pain or distressed. There were 5 of us between siblings & my mum, plus partners etc for comfort & help. We had familiar carers coming & going. That all made a huge difference.

If you feel differently & are concerned about your loved ones comfort, then that's a whole different ballgame. Everyone's situation is unique. If you feel frightened or concerned you won't cope, then I'd say make the decision before it becomes an emergency.

It doesn't sound like the very end IME. But it does sound like he is nearing it. The end usually last 1-2 weeks where he'll be drinking even less, skin will be mottled etc. Mobility and speaking suggests he has some energy so is taking in enough, towards the end he won't take in as much because his body won't need it.

Yes it sounds to me like the process has begun.

Sorry to hear about your situation and your relatives cancer.

My relative couldn’t go into a hospice as there were no places left as it was full (way prior to covid).

So you might need to remember that. If your relative is happy at home I hope he can stay there.

Marie Curie nurses are great. Hopefully you can get the support you need from them. I’d be getting extra pain meds for him arranged asap. I hope his passing is peaceful.

Thank you all for sharing 💐 it’s a fucking hideous disease isn’t it. The worst part of oesophageal cancer is the being unable to swallow anything at all towards the end. He’s virtually skin and bones, it’s incredibly sad to see and you just feel so helpless watching from the sidelines.

@JumpingPiglets Sorry to hear about your father. In this instance he wants to go to hospice at the end to make things easier for his wife who has her own health issues to deal with. In an ideal world staying at home would be the best option but in this case it really isn’t unless he dies peacefully in his sleep before it gets to that stage (which would no doubt be a blessing in disguise).

@Wilkolampshade Sadly your mums passing sounds similar to my mums, we had to endure a week of sedation before she eventually passed on a gloriously sunny day, the sheer relief it was over was palpable.

@MatildaTheCat I fear we are not at the end yet too. Sorry to read your story.

@RocketPanda hopefully he does the same as your mum and goes without having to endure the grim drawn out alternative.

Lost my mum to pancreatic cancer and this was how it went with her. We were informed she’d most likely die in her sleep but she suffered a drop in blood pressure in the end and died over a few hours (don’t think she was aware of it after the bp drop as she had a kind of seizure). She died at home.

OP, I could have written this exact post recently. My BIL died of the same cancer in June. What you have described is exactly how he was in his final weeks. I am sorry to say that from the stage you have described until his death was less than 2 weeks. Even the day before he died he was sitting up and talking. Even joking with people. He also slept very still and we often had to “check” to see if he was still alive or not in the night. In fact, the morning he died and my niece said “he’s died” we even said to her “no that’s just how he sleeps”.

He was the third family member we have lost to the same cancer but the first that I have been so involved with in the final weeks. The hospice at home arrangement was in our home as his home wasn’t suitable. So he moved in with us.

Thanks for popping by A5, real classy of you.

Sorry, where I said '1-2 weeks' I meant that the end of life signs don't often last longer than that, so if he's been like this for more than a week it likely isn't the last stage.

DH died from bile duct cancer with liver mets after having a stroke which put paid to further chemo, he didn't eat much for the last few weeks probably from just before Christmas until his death in late Feb. He refused Ensures or anything similar and his pain ramped up rapidly in the last few days. He didn't have the mottled extremities but did sleep for increasing amounts of time towards the end. He went on to a syringe driver late on the Friday afternoon and died early on Sunday morning. When he was discharged from hospital after the stroke we were told six to twelve months but I knew that was bollocks, he was discharged the week before Christmas and lasted two months.

Can you ask for an assessment from the hospice? They will help to guide you on whether you need to be thinking about admission.

It's an awful thing to watch

Not kind.

I think good mouth care can make it very much better if you can’t swallow. I wish we’d focused entirely on comfort.

Sounds like it's approaching but not quite there yet.

I recently lost someone close to me to esophagus cancer who was 60, he had mets to the area around his lungs but not the lungs themselves so kind of simular.

The last week, he was sleeping a lot, but able to get up and transfer, he communicated very short sentences or one word responses, spoke with a whisper, very drowsy. Ate maybe a few spoons of yoghurt and a fortisip.

Final 48 hours, mostly asleep with mouth open, opened his eyes occasionally for one or two sips of drink.

Once he started declining liquids all together, he went to sleep, mouth open, started turning a bit grey, started the 'death' rattle, and was gone in about 6 hours.

Felt queasy writing this.

But before he died I went on lots of forums to read what to expect, and I knew he was in his last week, then last 24 hours, then last few hours, it did help somewhat to know what to expect, and helped to control the situation, for example a relative kept pushing for him to drink even though he said he couldn't, I explained that he can't drink as he is too weak to swallow and his body is rejecting it for a reason. And I was able to explain what the rattle noise was as it alarmed some people. So it did help to learn about it first.

@KentuckyCriedFricken sorry to read about your BIL. I know all cancer is nasty but I’m sure you’ll agree this one really does have an incredibly sinister edge to it. The malnutrition and lack of proper hydration is a big concern for me because he hasn’t been eating much for weeks now and that’s on top of the initial months long huge weight loss from swallowing difficulties. Was there any signs in the days before your BIL passed that you think were indicators of dying?

I just hope it doesn’t go on much longer simply because I’m petrified of how he will look at the end for his family to see.

What a horrible comment. You must be so proud of yourself.

Sorry you're going through this, OP

I've posted this on here a few times before, but maybe you'll find something helpful in it. I can't remember where it's from now. I am likely to be in the same situation in the not too distant future as my mum has stage 4 cancer, and I find a comfort in reading it.

'When someone dies, the first thing to do is nothing. Don't run out and call the nurse. Don't pick up the phone. Take a deep breath and be present to the magnitude of the moment.

There's a grace to being at the bedside of someone you love as they make their transition out of this world. At the moment they take their last breath, there's an incredible sacredness in the space. The veil between the worlds opens.

We're so unprepared and untrained in how to deal with death that sometimes a kind of panic response kicks in. "They're dead!"

We knew they were going to die, so their being dead is not a surprise. It's not a problem to be solved. It's very sad, but it's not cause to panic.

If anything, their death is cause to take a deep breath, to stop, and be really present to what's happening. If you're at home, maybe put on the kettle and make a cup of tea.

Sit at the bedside and just be present to the experience in the room. What's happening for you? What might be happening for them? What other presences are here that might be supporting them on their way? Tune into all the beauty and magic.

Pausing gives your soul a chance to adjust, because no matter how prepared we are, a death is still a shock. If we kick right into "do" mode, and call 911, or call the hospice, we never get a chance to absorb the enormity of the event.

Give yourself five minutes or 10 minutes, or 15 minutes just to be. You'll never get that time back again if you don't take it now.

After that, do the smallest thing you can. Call the one person who needs to be called. Engage whatever systems need to be engaged, but engage them at the very most minimal level. Move really, really, really, slowly, because this is a period where it's easy for body and soul to get separated.

Our bodies can gallop forwards, but sometimes our souls haven't caught up. If you have an opportunity to be quiet and be present, take it. Accept and acclimatize and adjust to what's happening. Then, as the train starts rolling, and all the things that happen after a death kick in, you'll be better prepared.

You won't get a chance to catch your breath later on. You need to do it now.

Being present in the moments after death is an incredible gift to yourself, it's a gift to the people you're with, and it's a gift to the person who's just died. They're just a hair's breath away. They're just starting their new journey in the world without a body. If you keep a calm space around their body, and in the room, they're launched in a more beautiful way. It's a service to both sides of the veil.'

My brother was like this when he diedof the same cancer in April. On his last day he seemed to be awake most of the day but he couldn't move or talk and his breathing was laboured with his mouth open all the time. We all sat with him on his last day taking it in turns to hood his hand. He died on his wife's birthday when his son was only 9 weeks old. It was so sad because he had wanted to be a dad for a very long time and would have been a great dad. I'm so sorry you and you relatives are going through this. I hope you get all the support you need in their final days and afterwards.

My dad died of Oesophageal Cancer. His last week was in a hospice where he was lucid when he was awake until the final day. He was in for a week. His feet swelled and he wasn't able to walk after about day 2. He was head back mouth open for maybe 12 hours before he died. He knew we were there. They used the pump in the last 24 hours

My sympathies OP x

As far as I know, and maybe this would ease his mind or yours, you are allowed to ask for medical assessments while on end of life care where I am, such as bloods and minimal scans; these are not considered active treatment, but necessary to help you understand the speed of progression of the disease, so the patient and their family aren’t unduly stressed by the unknown. I don’t see any reason why they couldn’t take a few bloods and see if his liver/kidneys/etc are starting to shut down or if his bloods show the heart is starting to show damage, etc? Because that’s what all the symptoms you’re looking for are meant to tell you (mottled skin, grey appearance, decreased urine output).

In answer to your question, I would say you have maybe a few weeks to a month, as a random guess from working in hospice as a spiritual advisor, and now dying myself, so being hyper-aware of all these things. He is showing all the signs of imminent death, but active dying will be once he no longer has those “normal talkative” phases you mention. He will no longer probably be able to use the toilet normally, and may be in a semi-coma. There may be absolutely no food or fluid intake. This can last for a week or so before actual death. Those who are very lucky simply die at the stage your relative is in now - their breathing becomes too labored while sleeping, they have no time to be afraid, and they’re gone. The rest will go through the process I’ve mentioned of losing their ability to recognize this world (semi-coma) or interact with it (eat, move, toilet) before they leave it.

I’m so sorry you and your relative are facing this. Cancer is incredibly awful and unfair, and I wish you the best. Hopefully, he will be able to pass soon, before the pain worsens much more.

no advice I just wanted to pop in and wish you strength and courage - I lost my mum to cancer last year. Its such a strange and stressful time xx