I'm a palliative care nurse

[alwaysgotyou]

I'm a specialist palliative care nurse with over 15 years experience in hospice inpatient units and in the community, working for charities and within the NHS.
Ask me anything.
NC for this, but been on MN since 2011.

Thank you for all that you do. My grandparents all passed in the 1990s. One was in the wrong setting entirely because of a lack of beds in the hospice (a rehabilitation hospital!) and I think that affected my relatives greatly. Two had ok deaths but one had a "good death" because a palliative nurse sister (as was, then) saw that there were too many bed sores that were acquired in the nursing home and set about not only relieving my GP of that pain but of ensuring their comfort was optimal before their passing. I think in a small way she saved my GP, even though he was on a palliative pathway, if you see what I mean. She helped my dad & his siblings enormously during the decline and afterwards too.

One thing I remember is GP saying in a lucid moment, I'm nearly 83. No one in our family has ever made 83. I need to be the first. And they died a few days after their 83rd birthday.

OP, do you think the subconscious makes people wait for an anniversary or specific person to arrive before they pass away?

You're very welcome to offload here.
I wish I could help more.
I would urge your mum to accept a hospice referral (you can ask her GP to do this) especially for emotional support, they can also help you with counselling and emotional support too, some also have social workers attached too. Once she's gotten over the shock, she may feel differently about her end of life plans. Come back here whenever you need to talk. X

I certainly hope so.
They get treated the same if they are in the hospice, same after death care and everything x

@Lemsipper not at all insensitive, I was asked a question and I answered it. This is ask me anything, it is the truth in my experience. People can be awful to others when they are dying and brain tumours and cognitive changes caused by disease and fear aside there is no other reason for it.

It honestly makes me feel sick and so so sad, I could cry.

It's not something I have experienced, some patients eyes leak but no sobbing. If it were me I think I would have given some relaxant incase he felt distressed. I'm sorry you had to go through that. Please seek help from the hospice if it troubles you still x

Lots of things, especially when I worked in my first hospice (it was a grade 1 listed manor) and we had a "cool room" in the basement. I saw lots of ghosts.
People mostly regret working so hard, and not spending enough time with their families/children and letting silly little arguments fester. There is a great book called top five regrets of the dying which I really recommend.

@cerisepanther73
And yes, generally speaking, young people fight and fight and fight and fight and fight and fight with everything they have, every treatment option, they want to live, so desperately, even just another month, another week, whatever side effects, they want all of the life they can have, which of course I don't blame them for but generally speaking older people weigh up quality of time over quantity and accept death more easily.
Hope that makes sense x

I absolutely do. Shame to hear hospice beds was an issue even back then.

@Estellaa No, we aren't allowed to help anyone along, even though we are often asked to and people believe that is what they're coming to a hospice for at times. When I first started in palliative care the consultant used to ask people what they wanted at end of life "do you want to be more sleepy" etc but even that seems to have stopped now which I think is a big shame personally. X

@alwaysgotyou thank you for this thread. It’s really interesting, informative and your compassion and professionalism shines through your replies.

I am not a religious person and my thinking is more scientific than spiritual. That said, I’m struck by the number of people, including some of my own elderly family members, who say a few days before they die, that “(a dead loved family member) was here”. As a Clinical Psychologist, I have a good understanding of hallucinations, but I can’t help but think this particular phenomenon could be something more (which jars against my scientific mind). Hallucinations, whatever the cause, are usually unique to the individual, but here we have a very specific ‘loved dead relative visit’. What are your thoughts on this and if you’ve have any Psychologists working in your hospice over the years, have they commented on this?

@alwaysgotyou
Typo mistake patients *

Do people who have lost capacity receive palliative care? My MIL is in a nursing home, Parkinson’s / osteoporosis / dementia, completely immobile and double incontinent. She continues to be fed / watered / kept clean and my FIL absolutely wants her to continue living for as long as possible. But I’m assuming that she will eventually die in the home, won’t she? And that the drs there will make the appropriate decisions in her best interests, even if my FIL can’t?

We hear it a lot, and I think it's lovely if it brings them comfort. I have no way of knowing either way of course. Family members will often say "it's okay mum/dad/whoever go and be with xxx now, it's okay to go now." Which I also think may play a part. X

@alwaysgotyou good point. That hadn’t occurred to me.

My Dad passed from Cancer 10 years ago.
He wasn't in any pain thank God, but had lost the use of his legs, bladder, bowels etc.

He was only diagnosed 12 weeks earlier, so it was very quick.

My mum insists...although, I saw no evidence, that the nurse, in the respite home he was in, gave him a high dose of morphine to help him 'on his way' as he was at the time effectively dying and we were just counting the hours.

Does this happen...or is my mum...as usual...embellishing ???

Yes they do, we have people who are under a DOLS (deprivation of liberty) in the hospice or people whose loved ones have LPA (lasting power of attorney for health) who can make decisions on their behalf.
It is interesting to me that he wants her live as long as possible, given from what you said she seems to have little quality of life, and I mean by that she cannot do the things she would live prior to her dementia taking hold.
Nursing homes can give palliative care and are often supported by hospices x

It's illegal and immoral. Nurse would be struck of NMC register

We just don't talk about it to them if they don't want to know and that is made very clear at every handover, but we give them the opportunity to ask us any questions. We also ask the relatives if they want to know instead. I'm really sorry your dads wishes weren't respected xx

So it could just have been his eyes leaking and not actual crying then? I never knew that, thankyou.

Not good care at all but I wouldn't want to say not normal knowing what I know about general hospitals and lack of bed spaces. There should have been an offer of a hospice bed for someone that poorly. Or a least a conversation around dying or something!

Surely it’s common for people to be so scared & overwhelmed by dying that they become bad tempered with those they love. It certainly doesn’t mean they’re a horrible person. I also think that’s an unpleasant thing to say.

The psychological impacts of being terminally ill are significant and impact on personality.

I have no questions for you as most people have covered what I would have asked but I just want to say that I think you and any other palliative care nurse are wonderful human beings.

My MIL died in hospice and the nurses were wonderful even though she was in so much pain and it was such a stressful and very sad time.

Our 4 year old niece was at a local children’s hospice whilst she was dying from a brain tumour. Even though she was in a vegetative state the nurses treated her with such compassion and respect and did games and art with her and spoke to her like a little girl not a dying human, they were brilliant.

I truly don’t know how you are able to enjoy life after seeing so much suffering (I do have terrible existential fear though!) but you do and that makes you such very special people in my eyes.

Thank you for what you do.

Actually I do have a question and I apologies if it’s been asked but in your experience are most deaths peaceful? I believe MIL’s was (we missed her death by minutes), the nurses said she did just slip by.

However, my dh’s work colleague passed away a few years ago from lung cancer (was only 44). His dad told dh that his son’s death was torture, he screamed in agony and begged for his dad to not let him die. It must have been beyond horrific for his poor father (who sadly passed away a year later). That has really stuck with me.

@AnnieSnap it's interesting insight you have brought that subject up about people before they pass on having hallucinations,

I was thinking 🤔 about this before a while ago,

I think that it must be like having a very lucid dream
like in in and out of meditative state of consciousness,

I wonder whether it's like for dying person like seeing a cinema screen of your dead loved ones, or cine screen speeded up on fast play in a hazy mix of black and white and colour or just colour images,
of family style photographs moving quickly,

Or
even like a one of those smaller books like those style of flick the pages books,
and pictures images seem to suddenly appear to come to life,
depending what era of time resonates is meaningful for dying person ect

to me this makes sense seeing family type of photographs moving images,

whilst in dying process,

So dying person is perceiving this, in these ways and is muttering to themselves trying to talk to dead loved ones,
thinking they are still around alive when they

we all have probably had dreams that have been so lucid that it feels real and for a brief min or two in a groggy sleep first thing in the morning,
wondered did that happen to me ?