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Original poster

Dying in pain - is this just the reality for some people? *Possible trigger warning*

46 replies

justwantacuppa · 10/12/2021 21:01

Dad is at end of life stage now, we’ve got him at home. He hasn’t had more than a few syringes of water for about 3 days, hasn’t eaten anything in 2 weeks and has been bed-bound for a month or so. He can’t talk properly and hasn’t been able to for almost a week now.

He has a syringe driver for morphine and midazolam and the nurses have been coming to give him extra injections of morphine on top of that. But he is still just constantly whimpering, groaning and crying in pain. When I say constantly I mean he hasn’t slept for more than 10 minutes in a row since 9 o’clock this morning, he has just lay there unresponsive to anything we say but groaning and crying out in pain every 5 seconds and flailing his arms around in the air continuously. It is absolutely horrifying and traumatising and I just want him to be at peace. Does anyone know what more we can do? Everybody says that once somebody has the syringe driver they’ll mainly sleep until the end. This just hasn’t been the case. He’s having the max pain relief but is still awake and in what seems to be an immense amount of pain. I don’t mean to frighten anybody but is this just the reality for some people? Is this how it will end and there’s nothing more we can do? I feel so helpless and would give anything for him to be more restful and at peace.

OP posts:
CaramelWaferAndTea · 10/12/2021 21:04

There is basically no limit on the morphine dose. Ask the nurses to speak to the doctor on call - should be a doctor covering the local hospice they can talk to- if they need a higher dose.

Original poster
justwantacuppa · 10/12/2021 21:06

@CaramelWaferAndTea Thank you so much for replying so quickly. I feel so alone. His paperwork says max 30mg of morphine in 24 hours - at this stage can that go out of the window?

OP posts:
Yourheartwillleadyouhome · 10/12/2021 21:06

Be very persistent in demanding more pain relief. They can help you. Lots of love.

OldTinHat · 10/12/2021 21:06

I'm saying this in the kindest way I can. Let him its okay to go. Tell him it's okay to move on, not to fight, you all love him and you always will. That'll you'll never forget him. You'll love him always.

Vallmo47 · 10/12/2021 21:06

It sounds like he needs more morphine Op. I’m so horrendously sorry. I’ve been in those shoes and that pain is … beyond any pain I’ve ever ever experienced.
I’m so sorry.

PotteringAlong · 10/12/2021 21:07

His paperwork says max 30mg of morphine in 24 hours - at this stage can that go out of the window?

Yes. My dad was an inpatient in the hospice when he died but he basically got whatever he needed when he needed it.

Flowers it’s really really tough, and I will be thinking of you tonight.

ivykaty44 · 10/12/2021 21:09

at this stage can that go out of the window?

the doctor can increase this

do you have any external help coming in? carers or Marie curie?

This is and must be very draining on you all at home

OldTinHat · 10/12/2021 21:09

It sounds like he needs you all to give him permission to move on and that you'll all be okay.

EgonSpengler2020 · 10/12/2021 21:09

[quote justwantacuppa]@CaramelWaferAndTea Thank you so much for replying so quickly. I feel so alone. His paperwork says max 30mg of morphine in 24 hours - at this stage can that go out of the window?[/quote]
That's not a lot of morphine. Ask for a review.

Tethersend01 · 10/12/2021 21:11

Im so sorry to hear this OP.
Im a nurse (have sat with people one to one for their last hours in nursing homes and cared for people in hospice care early in my career. What you describe is not ‘normal’ or acceptable in my opinion. Medication should be adequate to manage pain and distress.
Who is prescribing and monitoring the syringe driver? Is it a palliative care team?
Please do call his care team and tell them your DF level of pain is in managed , unacceptable and requires urgent preferably immediate review.

inininsomnia · 10/12/2021 21:12

Please do ask what more can be done. I'm so sorry you're going through this. My dad died last month. He was in a hospice but the staff responded well when we ask for more medication for him. I wish you all peace.

OldTinHat · 10/12/2021 21:12

I'm so sorry you're going through this x

Tethersend01 · 10/12/2021 21:13

Also please do use the same language as you have used here, that you are horrified and traumatised, as its the truth and describes well the gravity of the situation.

Original poster
justwantacuppa · 10/12/2021 21:15

I am so glad for all your responses so quickly I truly am. I have just felt so alone. To read your replies has been such a help.

The district nurse comes once a day and we have been ringing rapid response who have come several times a day to deliver additional morphine. Thank you for telling me that 30mg is not actually a lot. I wonder why they haven’t been giving him more when I have been calling them so often? God I just feel a mess

OP posts:
Piggy42 · 10/12/2021 21:16

I’m sorry you’re going through this. Other posters have posted more practical advice, and I hope you can give your dad more pain relief 💐

mineofuselessinformation · 10/12/2021 21:16

Bless you, @justwantacuppa. I hope you don't mind me saying that.
As PP have suggested it's a good thing to tell him it's ok to go now. My understanding is that some people find it easier to let go that way. (I'm sorry if you feel that's hurtful.)
But you might want to think about asking his nursing team for everything he can have in his syringe driver.
I hope you have others who are around who can tag-team you. It's important that you can get some rest too.
Calm words that can soothe him - 'it's ok, don't worry', 'it ok to go now if you want to' while holding his hand might help.
I'm so sorry that you're in this position. It's rubbish (I've been there with my DDad). Thanks

picklemewalnuts · 10/12/2021 21:18

We had a similar situation, there was no one available at the weekend to increase his dose. it wasn't quite as distressing as you are describing, but it wasn't great. He was still conscious at times and grumbling and occasionally shouting angrily.

Please do create and assert that More is needed.

Twoweekcruise · 10/12/2021 21:18

I’m sorry your poor dad is experiencing this op. My MIL was similar last year, the hospice said they couldn’t give her any more morphine but she would moan and cry out even though she couldn’t speak or open her eyes, it was awful to witness and she seemed in so much distress. In hindsight we should have demanded more pain relief but due to Covid only one person could go in there at one time and it was hard to see anyone in charge.
Definitely see if you can push for the max pain relief for your poor dad.

Winterlove · 10/12/2021 21:18

The 30mg of morphine is likely a slow release morphine but there’s a fast acting morphine people can have on top of this and it’s usually given as often as needed in doses of around 5ml.

Agitation could be part of what’s going on which might manifest as pain. If you’re concerned though, definitely speak to the nurses or doctors and ask for more pain relief to see how he goes.

Sending you all a hug. It’s a hard thing to watch.

Yummymummy2020 · 10/12/2021 21:22

You poor thing. My dad died of cancer but in the actual hospice. They added an anti psychotic drug to the driver which helped a lot as he was getting very distressed. This can happen apparently. He was heavily sedated for the last two weeks of his life so bed bound but he constantly had top ups to the driver and seemed peaceful. I totally understand the pain you are in watching this. It’s absolutely heart breaking. I remember I literally felt physical pain witnessing it and my heart was broken to pieces. It does sound like more can be done for him going from my experience. The staff told me some patients suffer terminal agitation so they can get very distressed ect. I think that’s the road my dad was going down till they changed the cocktail of drugs. They had also put an anti sickness in too because if he was feeling nauseous it would cause agitation as well. At the last two weeks, he was pretty much asleep the whole time with the medication and to me he seemed very peaceful. I really hope now they can sort your dad out to make his passing more comfortable.

CoffeeRunner · 10/12/2021 21:23

My dad was taken from home to the hospice at this point so that they could control his pain more effectively.

That was 18 years ago now though, I imagine it's possible to do the same thing at home now.

It's shit OP. I'm so sorry you & your dad are going through this.

Beautifulroses · 10/12/2021 21:30

I am a palliative care nurse. This is NOT ok. People should not die in this way at all. It sounds like he has a degree of pain but in all honestly he sounds like he is terminally agitated and needs medication to treat this, you say he already has some midazolam in a syringe driver, has he had any extra doses of midazolam or levomepromazine? He most likely needs this.
As for the maximum doses this is a guide and in place for safety reasons, the maximum dose can be adjusted but usually after after sealing advice from a specialist in palliative care or a Dr.
What services do you have access to? Do you have a hospice at home/ palliative care service you can contact?
You sound like you are doing an absolutely amazing job being by his side, you should be proud of what you are doing.
I am so sorry for what you have been and are still going through, these symptoms are not ok - he has a right to a peaceful death.

Midlander88 · 10/12/2021 21:30

Really sorry you're going through this. I don't know much about it but my mum is an end of life carer and has described this exact scene a couple of times.

One of the times they realised there was huge pressure on their bladder and it seemed to make a difference to the pain once the nurse emptied it.

The other time, the macmillan nurse called it a "stress passing", which I remember thinking, but isn't every passing stressful? Apparently that nurse advised the family to step back for a bit, and maybe only one at a time near the bedside, because she said some patients fight against death too much so as not to leave/upset their family. It seems like a cliche, but apparently having the family just hold their hand and saying that it's OK to go can be really helpful.

Not everyone falls into the deep sleep, but the morphine will kick in eventually. My mum's described so many people's last moments, and almost every one has either eventually either drifted into a sleep, or slowly calmed down whilst seemingly awake, and peaceful.

You're doing a great job by being there and actively being aware of everything like morphine top ups. Ask for more if you think he needs it, and if you know more is coming, tell him it is and that the pain will be gone soon. Sending lots of love xx

Beautifulroses · 10/12/2021 21:34

Just noticed you said you have district nurses and rapid response giving extra doses. Which service the are rapid response people coming from? District nursing team or hospice?
Do you have a local hospice/ palliative care service?

user1471453601 · 10/12/2021 21:35

My Mum was in pain (not crying out, as she was unconscious) but Neice, a nurse, diagnosed her actions as pain. Doctor was called and suggested paracetamol, as morphine would depress her breathing. Dar!ing sis laughted in his face. Told him Mum was clearly near death, and asked him how much more her breathing could be compromised?

The doctor have her morphine. Mum died.

And I'm glad sis stood up for Mum against doctor. Mum went peacefully, no doubt, in part, because she had the morphine.

Tell the doctors, op, that our parent is in pain and needs help