End of Life Care - Morphine Sulfate for pain

[LoveMyLittleFatCat]

Hello to everyone in this awful club that nobody wants to join. I’d be very grateful if anyone could advise in relation to this please, based on your experiences with loved ones in this situation? My apologies if anyone finds this upsetting.

My DM was diagnosed with mixed dementia in February 2025 following an horrific and very rapid deterioration in her health. She is now at the severe stage and cannot walk/weight bear, is bed bound requiring repositioning every 2 hours due to significant tissue viability issues requiring daily district nursing care, cannot feed herself, is doubly incontinent, is sleeping a lot, is absolutely confused and has a very limited vocabulary where she repeats the same phrases/words over and over again when awake. The only positive aspect is that she still recognises me and other close family members.

As such, the GP recommended last week that she be moved to End of Life Care and she is now receiving Fast Track CHC funding, with a prognosis of 6-8 weeks. The anticipatory meds have been prescribed and are at the home for when the time comes. We have no issue with this whatsoever as we just don’t want her to suffer anymore. It is heart-breaking seeing her like this, which I know so many of you have sadly experienced.

However, in the last week or so she has been complaining of pain when the carers are attempting to provide personal care and reposition her. She can’t tell or show them – or me - where it hurts and they have been giving her paracetamol which is no longer effective.

As a result, the GP has prescribed morphine sulfate 10mg/5ml to be given 4 times a day, as required to enable the personal care/repositioning to be carried out without causing her pain.

My questions are:

Is the morphine sulfate likely to increase the amount of time she is sleeping?

Is there a likelihood that the administration of morphine sulfate to deal with her pain is perhaps the ‘start of the end’?

I appreciate that these are probably ‘how long is a piece of string’ questions but I would be very grateful for any insight or experiences that anyone can share who has experienced this with a loved one.

I take the same dose of morphine sulphate and slow release 40mg tablets twice per day. It did make me sleep more the first couple of weeks but doesn't now.
Im really sorry that you're going through this. We had the same with my mil. Once she got to this stage, she lived for around 3 months, but was quite happy during her waking periods

Thank you so much for your honesty and kindness in sharing your experiences, which I greatly appreciate.

Thanks also for your advice in how to approach the final stage. That is very helpful.

I'm so very sorry you've had to experience this twice. That must have been so very awful. I hope you are doing OK.

I had the same dose of morphine for pain for an injury recently. It definitely made me sleepy but was easy to stop when I wanted to.
My mum used to be a hospice nurse and she always said that people towards end of life can need increased amounts of morphine as they build tolerance but that no one has any way of guessing when the end will be, she has sat with hundreds if not thousands of people at the end and it was always different. She did say (especially to her own dad when he was given a terminal diagnosis) that morphine can be used to help a person have a very “good” death, peaceful, gentle and pain free, if that helps. I liked knowing it for my grandad and it was an accurate prediction in the end.
I’m so sorry you’re in this situation.

10mg/5ml is the strength the liquid morphine comes in the bottle. There should be a separate dose saying exactly how many mls each dose is. 5ml is a lot of morphine for a frail older person who has never had morphine before, it would be more common to have 1-2ml to start with.

From what you describe she sounds very unwell - things to consider are:

Is the turning really helping now or just causing more pain?

Is she actually in pain all the time, not just for care - usually you can tell very simply by moving their arm or leg gently while watching the person's face to see if they grimace, usually if someone is in severe pain on movement they have some pain all the time

What is the plan for when she can't swallow the morphine, especially if she already needs it regularly?

Thank you and I'm sorry to hear you need such strong meds for your pain. But it's really good to hear that it is effective for you and that it worked very well for your MiL when she was in the same position as my DM.

Thank you. At this stage a 'good death' is all we want for her. A gentle and peaceful end which spares her from the indignity and awfulness of dementia. I'm glad that's what your Granddad got and thanks to your DM for her care for patients like my DM.

Many thanks for your insight, much appreciated as all this is new to us.

The GP has prescribed 2.5 - 5mls of morphine sulfate up to 4 times a day.

She definitely needs repositioning due to pressure ulcers on her bottom and groin area, one of which is necrotic although it is now starting to heal as it is being dressed daily.

She doesn't seem to be in pain all the time. She can move her arms and legs independently without experiencing any pain. It seems to be when they are moving her via the hoist when she complains of pain through her back and front.

The GP has already prescribed anticipatory meds, which includes morphine ampoules for injection so that is covered. She can still swallow at the moment.

I would recommend that you ask for an urgent referral to the palliative care team. They are the absolute experts in pain control in this kind of situation and they are also very experienced at explaining the options and the reason for their suggestions. We had a fantastic GP who supported us through my DH's cancer, but he acknowledged that the palliative care team were better placed to deliver what we needed. They will be able to support you as well in ways that the GP probably can't.

Thanks, but the palliative care team are already involved and visited DM for the first time last week and their view was that she didn't yet need the anticipatory meds. They didn't contact me though, they just spoke to the care home, which isn't ideal and I'm not happy about it.

However, the GP prescribing morphine sulfate today for her pain does change things somewhat. As such I will be chasing up a conversation with them as a matter of urgency.

Im sorry for you and anyone else in this awful position.
When my mum was on the pathway and was on morphine I noticed her lucidity diminished significantly and she was sleeping a lot. She was though, unsettled and her breathing was ragged. And yes, she could hear. She quietened and settled when I was having a conversation with her grandson in her room. But she didn't seem to be in pain. Wishing you all peace.

10mg 6 hourly isn’t a huge dose. We give it to children at work all the time. It’s the next step up after paracetamol and ibuprofen.

My DF died 3 months ago from vascular dementia he was prescribed morphine, it was explained that once given it he would be much less responsive and just sleep. We agreed to hi having it as he was clearly in pain, he was also given drugs to clear his chest as his breathing became rattly because the morphine relaxes muscles. It was a good decision he was more peaceful and comfortable.

My DF died 3 months ago from vascular dementia he was prescribed morphine, it was explained that once given it he would be much less responsive and just sleep. We agreed to hi having it as he was clearly in pain, he was also given drugs to clear his chest as his breathing became rattly because the morphine relaxes muscles. It was a good decision he was more peaceful and comfortable.

Hi OP, so sorry to hear you are going through this. My DF died with dementia too and was on morphine. Towards the end he disliked touch eg hugging and I got the impression either that pressure was painful/ uncomfortable as he was too thin or that he was disoriented/ disturbed by physical contact. Just adding in case it’s anything like this for your mum.

we were lucky to have excellent care from the hospice team - sorry to hear it doesn’t sound to have got off to a great start for you, and hope it improves.

So sorry you’re going through this @LoveMyLittleFatCat. I do agree with the PP who says she may rally a bit.

We’ve had this with DFIL yesterday who has just received funding for end of life care and has barely moved, eaten or drunk for days.

Yesterday he asked for lunch. Sat at the table and then proceeded to walk around the garden after eating everything given to him.

The crash came at teatime and was a big crash.

Hoping that the morphine brings some relief for your DM and helps her to be more settled

And do come over to the Cockroach Cafe in the Elderly Parents. The lovely MNers iI’m there will understand everything you’re going through

Thank you everyone for sharing your experiences and I'm sorry for what you and your loved ones have all had to go through and are going through. It's just really shit!

We went to visit Mum earlier and she was asleep when we arrived but she did wake up when I spoke to her. The care home gave her the first dose of morphine sulphate this morning so they could do her personal care without causing her pain and they advised that she has been far more settled throughout the day as a result. Which can only be a good thing.

She was barely able to communicate though, I think she only said 2 or 3 words and didn't respond very coherently when I asked her if she was warm enough or if she was in pain. The only thing she did answer clearly was when I asked her if she wanted a drink of juice and she said she did. She took one small sip.

She spent most of the time we were with her staring at the ceiling or at the wall even when I was sitting next to her holding her hand and talking to her. Both her hands and feet were cool - even cold - to the touch, even though the temperature in her room is always very warm and she was covered in a woolly blanket. Having done endless reading I'm aware that it indicates that she is in the final phases. Up until today they've been normal temperature.

I feel so guilty for just wanting her to slip away in her sleep but I just don't want her to suffer anymore. It's a living death and she doesn't know that she's still alive.

Thanks @BunnyRuddington - the Cockroach Cafe looks like a superb source of support and sharing experiences. I'll be there, thank you.

Please don't feel guilty about wanting her to slip away in her aleep, for her suffering to end, those of us who have walked a similar path understand and empathise. Have a big hug from me, it is so, so hard.

You've had good advice on this thread, I don't need to add anything.

Thank you @RedNine for your kind words and the hug. I appreciate it more than I can say.

Gentle hug to you. We lost MIL very recently, she’d been on an end of life pathway supported by hospice and district nursing. As you say, dementia patients can’t clearly communicate pain, but you’ll see the signs if you know her. MIL had oxycodone and morphine before being repositioned/ personal care, it seemed an effective combination. She also had an air bed that periodically inflated/ deflated/ moved her very slightly to alleviate the pressure. The hospice got that for her, through the nhs medical equipment service.

It’s heartbreaking and so very hard to watch them go. You’re perfectly normal to want the suffering to stop. Lots of love to you.

Thank you @SockFluffInTheBath for your kind words and support.

Apologies for the delay in responding but we've been trying to sort Mum's house and garden out and my brain has been fried every evening.

I'm so very sorry for your loss. It's just awful to see our loved ones suffer and there's nothing we can do about it.

Mum now has an air bed, which does seem to be helping. Her bed is kept very low and she has a crash mat on the floor as she does try to get out of it as she prefers to sleep in a chair. She has done for years so this is nothing new. She fell out of bed again on Saturday but wasn't hurt thankfully.

She is sleeping a lot now, which I'm thankful for. The first couple of times when I visited after they started giving her morphine I did try to wake her and talk to her but she was so distressed - scratching at herself, talking to her Dad and talking absolute nonsense - that I've decided not to do that anymore. It doesn't do her or me any good and I'd prefer to stay asleep and calm. At least when she's sleeping she doesn't know what's happening to her.

Bless her, and more gentle hugs for you. Peaceful sleep is a beautiful thing. I am holding your hand.

@LoveMyLittleFatCat it’s very normal for them to talk to the dead towards the end. My MIL was chattering to her parents when she was awake, You can still talk to your mum, she will hear you.