need to rant

[ffsitsshit]

for years we have been dealing with ill health which is getting worse and worse
its been a roller coaster for ages up down up down
each day the phone call is expected to say they have passed but then they pick up again and balance precariously on the top of the roller coaster before it crashes down again
now its crashed down again and its a nightmare
nobody can help but its a mess
we don't know if this is the end or if its going to pick back up again and haul up the next hill ready to crash again
im cant sleep, i don't know what is happening
i think its time for this roller coaster to be pulled off the tracks

Oh, just for the record, that thing about 'palliative care' and the lovely picture I then drew up of classical music on the iPod. Ignore that... the two were not meant to be linked. You provide the latter, palliative care does not.

IMO palliative care in this country means 'The doctor will kill you now'. That can be done by all sort of covert means, and most likely relatives will not be told about it. It saves money.

Newspaper I am truly sorry and horrified that you feel the way you do about palliative care.
It is not as you say a way for the state to covertly kill people and as a nurse I actually take offence at that.
Palliative care is there to support the individual and their loved ones when any further intervention would be futile. In allowing interventions to continue at any cost (not financial , I am talking emotional and physical) is often not in the patients best interests.
We are usually heavily invested in our patients and want to do right by them.
I strongly suggest that people look into advance care planning and start discussing what you want to happen should you loose capacity so that your loved ones know your wishes.
We as a population need to discuss death more and accept it as part of life.
It is horrendous , having lost a young cousin, a young uncle, young friends , I have been on both sides both as a family member grieving and as a professional.
As a nurse I hope I have been supportive and not as you suggest killing people off for the good of the state.
Also we are often accused of keeping people alive too long at subjecting people to treatment that is not appropriate.......we obviously can't win.
To the OP , as a carer and a relative it is hard. Do not feel guilty about your times of frustration and as people have said do take time out. Take care x

When my dad was poorly I felt like you, OP. My Mum was pushing for more and more treatment, and his days were a misery of her trying to hound him to get better.

Palliative care was the official policy, but mum wouldn't allow DNR and refused to accept there was nothing more to be done.

And the awfulness of knowing it will only end when you lose your loved one is a kick in the gut too. Sigh.
((Hugs)).

Please take these comments are coming from a place of understanding and empathy- I've watched both my parents die from cancer. They did not have dementia and so it made a lot of the decision making easier because they were involved- mum was an ex-nurse who cared for my dad before he died so she knew a lot about how it would be when she was dying.
DNR is not a euthanasia order. My Mum was able to renew or revoke her DNR with every crisis visit to hospital (and there were many). Palliative care did not mean writing her off. It meant keeping her comfortable, respecting her dignity and, eventually in her case accepting that there was no fix.
I have previously had dreadful personal experience at the hands of the NHS as a patient and it made me fight for every bit of help care and advice I could get for Mum. And I got it. And she was pretty well cared for- she lived in a very dysfunctional area of the UK where they were trialling better integration of health and social care. And it worked.
But, Christ, it is emotionally difficult. I have cousins going through it with my mum's little sister (in her 80s). I can tell the forced cheerfulness and positivity in their voices as they talk to her.

I agree that DNR is not a euthansia order, though it would help to have it spelt out on the nursing home wall the parameters of that, so paramedics can take a view if they are called out. So, massive heart attack, severe stroke might mean 'let them go'. But some kind of fluid that needs suction, or virus or something, then do your best to save them.

Coffee and biscuits, my aim is not to offend but to inform. I live in Surrey and there is something dodgy going on there. Any time we got offered palliative care it was like the dodgy waiter trying to offload a dish that was approaching its sell-by date. As for trying to give our mum 'comfort' well that's all we were trying to do for years, in the teeth of fierce resistance from the State by which I mean local Social Services.
'Palliative care' was mentioned by a care home manager in passing, and I took no notice, thinking it 'pastoral care' or something you got put on temporarily when they go off their food for a bit. Two weeks later she was in hospital with severe kidney injury caused by dehydration. She nearly died. Others weren't so lucky, and did.
Thereafter we got pressed on the issue of 'palliative care', one choice time an eager 'face up to the facts' consultant neurologist when the only reason we were visiting was to change our mother's Parkinson's medication so she wasn't burning up with heat and diskineysia for hours on end, indeed months on end. If it was a struggle to get them to do that, I don't see where the 'comfort' aspect of palliative would come in.

Having lived in an area with catastrophically poor maternity care, covered up for years (you've seen this on the news) and experienced it first hand, I'm sorry if that is your experience of palliative care @NewspaperTaxis . It's not mine. If it's a postcode lottery then that's shameful. I experienced the postcode lottery of maternity care but not elder care (different area). In short, rant away, op but don't assume palliative care is dreadful - speak to other patients locally if you can. Talk to your local PALS.

I am really sorry you're going through this OP

When my FIL passed away a few years ago, it was a very drawn out process. I can't remember how many times DH was called in at all hours to sit at his bedside, for him to rally round and see another day out. It was unbearably cruel - not only for FIL but for DH and SIL to have to sit there and watch.

A rollercoaster is just what it is.

I think it’s hard for people who’ve lost parents to read this “i think its time for this roller coaster to be pulled off the tracks”. It makes it sound like you wished they were gone. Sorry if it’s not what you meant but did t doesn’t come across well

I disagree. Having lost both parents at quite a young age, I am incredibly grateful not to have this to "look forward to".