End of life care - what to expect

[ErlingHaalandsManBun]

So, my very close lovely friend is coming to the end of her life and I am devastated. She has been my rock and I have been there for her all through her journey with cancer for the last 5 years. She has fought so bloody hard and I just feel so sad that her life is coming to an end. I have dreaded this day since we were told it was terminal.

She has been moved to a hospice.

She is sleeping a lot, and although she is still being got out of bed daily, cleaned and changed and sat in her chair she is pretty much closed down. She is no longer talking or communicating and the last week or so has been refusing to eat, and now drink. Her pee is an awful colour, like coca-cola, and she hasn't had a bowel movement in days. She is literally wasting away and is so thin.

I know that no-one can tell us how long she has left as its different for everyone but I don't know if we are looking at months/weeks or days here.

Can anyone give me an idea of what to expect now? Or share their own experiences from this stage of end of life.

I feel awful for saying this, as I love my friend so much and I will forever miss her, but I feel so sad seeing her this way and I just wish this would end for her. Its awful and painful to see my once vibrant, funny, full of life friend, looking like a shell and so painfully thin and poorly. It feels so cruel. 😥

The hospice really is the best place for your friend - she will be kept comfortable and they are the best people for managing pain relief. You will, I imagine be able to visit pretty much any time (as we were for Bro-in-law) she may not be up to chatting or doing anything much at all so be prepared for the quiet times when you can just be there. Take a book or cross stitch or other hobby and just be there.
Maybe take along some photos so you can chat about your shared past when she is awake. Do ask her if there is anything she wants to talk about or wants people to do for her. But most of all be with her - let her know that she is loved and that she loves you. Don't forget that friends are the family that you would choose for yourself.
Big cyber hugs are coming your way - and I'm so sorry that shitty cancer is yet again taking another much treasured and loved individual.😢

Last weeks certainly. Is she sitting in a chair? As in muscle tone holding her up? Has she got a syringe driver with medications going in over 24 hours? Sorry for the many questions… as she is young sometimes the body goes on for a bit longer but if she is no longer eating and barely drinking I would say she is likely to be in the last week of life, but if still in a chair it’s unlikely to be days. You could ask staff?

If she feels up to it maybe give her a nice hand or foot massage with some of her favourite creams

Play some of her favourite music gently in the background

Talking will take up extra energy so this could be a way of telling her that you love her

That sounds to me as if she is down to her last days, I am afraid, if she is no longer eating or drinking. I have sat with three family members through this stage. Does she have a syringe driver with morphine? She will probably spend increasing amounts of time asleep, and her breathing will gradually start to change.

She will still be able to hear, and she might appreciate touch - holding her hand or stroking her arm. My father seemed to want to be hugged, even though he had never been a huggy sort of person in his life before. You could play music you know she likes, and talk to her about happy memories.

If you are the main person sitting with her, and she is no longer drinking, the nurses may get you to help with mouth care - moistening inside her mouth with little sponges, or applying lip balm, but be prepared for her to resist this (even in the last couple of days, my mother seemed to hate this; my sister was more sedated so did not react).

Thank you for your replies.

When I saw her yesterday she was up and sitting in her chair. But I don't think she will be for much longer as its clear she is very tired and just wants to sleep. She is constantly nodding off sat in her chair and I think she is at the point where she will now be in bed most of the time. Although her husband wants to encourage her out of bed as much as possible. He doesn't want her to be bed bound and keeps encouraging her that she must keep doing things. But I think that this is currently where she is at. It's difficult because her husband views allowing her to stay and sleep to be 'giving up' but I, and the nurses, have had to gently say to him that she needs to be resting now. Its so hard.

She has a syringe driver but doesn't appear in any sort of pain. But she is just refusing food and drink and her lips are so dry. She seems to be struggling with swallowing a bit too.

The times she is awake she is non communicative and just sits listening and doesn't even really move much.

I just sit to her and chat and witter away like I always have where she is concerned. She has raised a smile one or two times, and has visibly seemed sad when I say I have to go which is so hard.

I'm not the main person with her, her husband is pretty much with her all day, he has barely left her side. 🙁He does such a good job of helping the staff to take care of her and much of it he wants to do himself.

I have never watched a person die before and its breaking my heart. I have lost both my parents but each time it was a sudden unexpected death.

Thank you for your replies xx

I’m so sorry that you are seeing your lovely friend go through this. I went through this experience with a family member recently, it is very very difficult. I agree with pp who said to play her favourite music, or if there might be podcasts she might like. It sounds like it is the last week, maybe even last few days if nil by mouth - I am so so sorry. For me, I found it very difficult dealing with conflicting emotions - not wanting him to die, but wanting his pain to be over. I also found the uncertainty of it all very very difficult. The paragraph below is a description of my relative’s final hours, in case it will help you, in terms of understanding what may happen. Please don’t read it if you think it won’t help, or will make things worse for you. Also - I have had bereavement counselling from Cruse since it happened, and I have found it so so helpful. Sending love to you all x

With my relative, his hands went very very hot in the early hours one morning (perhaps around 2.00am), then they started really cooling down, and the lower part of his fingers / hands started to become very cold. That (apparently) was a sign that it was the last hours. At 8.00/9.00am, when the ‘hospice at home’ nurse visited, she told us to ring close family members to tell them to come over to see him. He passed away at noon. I wish I had understood what it all meant at the time - I was exhausted, so another relative took over sitting with him at 3.00am so I could sleep. But if I had known he was in his last hours I would have stayed, and had as long as I could with him. I was there when he finally died though - we had been told to expect difficult breathing noises, and I was dreading hearing him struggle, but in the end it was a pause in breathing - then a deep breath - then another pause in breathing, then a smaller deep breath - then nothing. So, very peaceful for him, and with family at his side.

It sounds like your a being a brilliant friend to her and the support you are giving her husband. She will be very tired and it is common for families to feel the person is 'giving up' but in reality of working 20 years in end of life care, I've seen very very few people give up. As you have noticed she is just completely overwhelmed by illness and I am sure she would like to get up and eat more but it is physically impossible for her.

Thank you so much for sharing this very difficult moment of your life with me. I really appreciate it.

It sounded like a really peaceful passing which is what I hope and pray for, for my dear friend.

I too am torn between wanting her to stay as long as possible because I can't bear the thought of her being gone. But I also struggle to see her so very poorly and I wonder how scared she must be. The fact she is non communicative is torture because I don't know what she is thinking and feeling and its so difficult.

I am talking to her about all sorts when I see her, sharing news, talking about our neighbours (we live on the same street) and I have no idea if what I am saying is helping her or making her feel sad because its a life that she is no longer a part of. 😢

Its so hard.

I’m so sorry; it sounds like you are doing a brilliant job of supporting her (& her husband) though. She knows you love her and being there with her is the best gift you can give her. Sending love x

Sadly you need to prepare for weeks. My mum, who was very frail lived for 4 weeks with just a drip. As they say the hearing is the last sense to go, just keep talking to her until the end.

i asked for the drip to be taken away and she died 48 hours later. The hospice will hopefully know when it is time to cease interfence

You are doing all the right things, sitting chatting to her, even if you don't get a response, she can probably hear. I sat with my oldest friend talking to her, but she wasn't in a hospice, just the most horrendous hospital ward I've ever encountered. I got a call at 5am to say to get to the hospital one morning, but sadly she was gone by the time I got there. I only left a few hours before to get some sleep. Just be there for her, and sending you much love and sympathy xx

The husband sounds in denial.

I’ve been with two friends just before they died. One was talking a bit but very tired and in pain so sent me to call a nurse for an injection which knocked her out. I sat and held her hand until she went to sleep. She died the next day. The other was already comatose but I sat with her too and she died a couple of days later. No-one can predict exactly when but it sounds as if your friend is close. I felt privileged to be with them at the end of their lives but it is very difficult to witness. I’ve also done it with my parents which is just too painful to write about.

Sadly I think you are correct.

I find it quite sad that he is going and getting her into her chair everyday despite the fact that I think she most likely would prefer to (and needs to) sleep.

The nurses do keep telling him that they need to put her back to bed now as she needs to rest and that her sleeping this much and being this tired is normal for end of life. Gently, they keep reiterating that he needs to allow nature to take its course but I can see the fear in his eyes. He feels if he allows her to sleep then she will never wake up again and he is definitely not ready to let her go.

What I have witnessed from him, this big strong army man, is the sheer love and devotion that he has to his wife. He barely leaves her side. It has been quite beautiful to see, but also heartbreaking at the same time.

Thank you for sharing your experiences. x

When my relative was recently receiving palliative care, one nurse told us if you see a change in days they’ve got says left, if you see a change in weeks they’ve got weeks left and if you see a change in months they’ve got months left.

your friend sounds very poorly and very much nearing the end of her life. I hope she passes peacefully. She will know that she is surrounded by love xx

That is very sad. It is hard to accept a loved one dying but it is kind to let them go peacefully. Much love to you at this difficult time. x

Your friend sounds very poorly, from my own experience I would say days possibly a week at most, im so sorry. Her husband needs to let her rest x

Thank you.

He absolutely does. The staff are excellent at kindly telling him that although they know that he means well, he needs to allow her to sleep if she needs it.

I think he is just struggling to accept that the next stage is her being bed bound as it means she is closer to death. 😔

She is in the process of leaving, I'm so sorry you are on the cusp of such grief, but I'm sure you are giving her great comfort just by being there.

If her husband doesn't listen to the staff she could very well pass away sitting in her chair.

I'm so sorry OP, this must be really difficult for you to experience.

If your friend has been refusing food for a little while then this will have seriously weakened her. Now that she's refusing fluids too I'd say (from personal experiences) that she's in her final days. I'd keep doing what you're doing, chatting away to her, as this is likely bringing her some comfort. It's also allowing her to rest as she won't have the energy to contribute to the conversation. Little chips of ice on the lips, or a bit of moisturiser will help with the dryness. Otherwise, keep letting your friend know you're there, tell her you love her, tell her the news. The hospice will keep her calm and pain free with the meds and hopefully she'll have a peaceful passing.