actively dying (sensitive)

[lessthanBeau]

just wanted to post this to give a heads up to other people who may find themselves in this position, if you are looking after someone who has a terminal illness, please research actively dying and terminal agitation, we were so shocked to see my dB go through this phase of dying its very distressing, and we were not prepared for it , if the docs and nurses had told us about this, we would have been able to understand what was happening.
and now after the event I've found out its quite common, I know no one wants to read about this stuff but we just wish we'd known beforehand that dying doesn't always happen peacefully, other people I've spoken to since who have witnessed this also didn't know what was happening so its relatively common that families aren't prepared for it.
I am in no way detracting from the care the nurses and doctors gave my dB they were amazing and they gave him dignity and comfort throughout. I m just saying they won't tell you unless you ask and sometimes you need to do your homework so it can help you deal with what's going on.

I hope I haven't offended or upset anyone with this post, that was far from my intention, good luck and much love to everyone dealing with whatever you're dealing with. xxx

Im glad you posted this. I for one would rather be aware of what may be to come.
It sounds distressing for the family to witness and im sorry nobody prepared you that it could happen.
Thank you for sharing your experience. Im sorry you had to go through it.
Im off to research it. Thank you

While I haven't seen this, I remember hearing of a dear friend who, in his last days, showed sudden, great distress. I'd imagined for years that it was about thinking of dying but now I can see it was, most likely, actively dying.

Having googled it a bit just now, I'd approach some sites with caution. One, claiming to be hospice-related said distress before death was all about unresolved issues (blame the patient, why don't you?), being spiritually unready, as opposed to a physiological state which has precise symptoms and physical causes as the body prepares to stop.

I feel sorry for anyone who experiences a loved one going through this, the more so if they have not been prepared.

for lessthanBeau, for sharing this.

I am a palliative care nurse and we certainly tell friends/relatives that this kind of agitation can be a problem for some.
It doesn't always occur and for most medication can help. It is a very upsetting thing for everyone involved , I have on a few occasions stayed on with patients beyond my hours to get on top of agitation with medication, reassurance, music as I'm aware how distressing it can be.

Unfortunately TV/soaps etc often give a very false view of the dying process and people are often very surprised at how different reality is.

This is a helpful post.. The storyline on Eastenders at the moment with Stan dying rang true for me, it showed the terminal agitation and how it shocked the family. I remember my grandad wouldn't stop pulling his sheets vigorously, and my dad kept asking for his temperature to be taken every two mins even though it stayed the same.. His organs dying made him feel like he was burning up.

People should also mentally prepare for what a dead person can look like as they don't always look asleep. My dad fell off his commode and his face looked like it was from a horror film after, mouth fully open and jaw to the side and eyes open but lost their colour. It was disturbing to see.. Thankfully he looked asleep in the chapel of rest.

this is an interesting thread.I am sorry you went through this mumslife and i shall try to bear it in mind now my Df has told us there isnt much they can do for his aggressive prostate cancer.I would find it upsetting to see my Df not his usual dignified self asif it isnt bad enough to see them ill.
My nan was hallucinating and seeing rabbits in her hospital room while Mum was with her in her final week of life.

Thanks op. Its helpful to know. I'm sorry about your db

Thank you posting this Beau. I haven't witnessed a death or heard of this and I won't forget. I agree that it's the sort of thing we should all be prepared for (as we are for giving birth).

I'm very sorry for your loss.

Im scared to google whats been suggested.

My housekeeper is dying. She's just t 40 and had Bone Mets, its also in her lungs. Its just six weeks since she had her second diagnosis and he has months left as her cancer is very aggressive. She will stay here with us as she has really has no one in her home country and we're already talking about end of life care with her Drs. It may be a few months away but we are trying to think ahead. We want to keep her at home, my SIL is a Dr and 2 of my sons carers are nurses who can all help with pain relief. But now this thing 'actively dying' has me scared for her, and for us.

mumslife your experience sounds very similar to what we witnessed with my DF (passed away last weekend). I wasn't prepared at all. He wasn't in pain but was very distressed and agitated. The hospice at home nurses had to keep upping his medication to keep him calm. He was in a coma like state at the end though thankfully.

OP for you too.

That's a lovely thing to do for your housekeeper Weebirdie. I hope it's not distressing.

Hello, my dad is very ill in hospital and we keep thinking that it is near the end but it hasn't been yet.
I want to know about all this - what is agitation exactly?

I hope this is not out of order, but thinking of my friend who I posted about upthread, who loved Shakespeare, I remembered the death of Falstaff from Henry V:

    a' parted even just between twelve	 
and one, even at the turning o' the tide: for after	 
I saw him fumble with the sheets and play with	 
flowers and smile upon his fingers' ends, I knew	 
there was but one way; for his nose was as sharp as	 
a pen, and a' babbled of green fields. 'How now,	 
sir John!' quoth I 'what, man! be o' good	 
cheer.' So a' cried out 'God, God, God!' three or	 
four times. Now I, to comfort him, bid him a'	 
should not think of God; I hoped there was no need	 
to trouble himself with any such thoughts yet. So	 
a' bade me lay more clothes on his feet: I put my	 
hand into the bed and felt them, and they were as	 
cold as any stone; then I felt to his knees, and	 
they were as cold as any stone, and so upward and	 
upward, and all was as cold as any stone.

As precise a description of a manner of dying, so like much that has been posted.

Weebirdie, how good of you to comfort and look after someone so far away from home.

Thank you :)

We're not in the UK so there is nothing like a hospice. It really is all down to family and its been explained to us that people are taken to hospital for day care pain management twice daily but when that becomes impossible they are admitted. But sometimes people who can do the care at home are allowed to and I think this is when there is medical professionals within the family who can administer drugs. We'll be able to do this, and I was just reminded yesterday by my daughter that her niece through marriage is a pain management specialist and she will also be on board with us.

We cant even contemplate her going home to near slum conditions and to the very people who have used her as cinderella since she was about 8 years old and a cash cow from the time she had the nerves of steel required to get out and work abroad. Her life story would leave people open mouthed if I repeated it, but I wont, its suffice to say that apart from us and her granddad who died when she was 6 she has never known love in her life.

I plucked up the courage to read about active dying and it was good to know what it entails and not as scary as I thought.

Shineyshoes I can't even imagine what pain you must be in. You sound so brave, I am astounded.

Thanks for this, I will research in a quiet moment. I am terrified of my dad dying, looks like it'll be soon, and I really need to hold it together.

Shineyshoes, Im so very sorry this has happened to your daughter and to your family.

I dont know what to say except that if you would like to tell us about your daughter we'd be happy to get to know her and share your memories of her.