need to rant

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".

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.

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 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.

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.

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)).

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

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.

A letter I had printed in the Times shortly after my mother died. I didn't choose the headline. Mine is the first letter.

I have to say that if the illness doesn't wear you down, the State will. No question my mother was trying to be killed by the State for years. It's a war of attrition.

I would say, take it in fortnightly chunks. Also, it's the stuff you didn't do that gets you after, anything you didn't get round to doing but had on the backburner as something maybe to look forward to.

It was when we perhaps 'relaxed' a bit that she went, sometimes it's like the tension and fight is what keeps them in the battle. There's talk of when you walk out the room and then they choose to go. For some, that makes sense because they want it to be private and may feel they are letting you down if they go when family is present.

Beats me why someone doesn't suggest palliative care to the OP. I mean, the State was forever suggesting it to us. Anyway, nice bit of classical music on the iPod, or a turntable playing old records. A cool, airy room, no pain. Small fridge in room.

There is a point when you could be just as effective if you took a less stressed attitude about it all. That said, the week I took that view was the week my mother went.

Still, wish I'd known sooner to stay off the filter coffee, visit the steam room/sauna, get some kind of massage or something...

There's also such a thing as 'anticipatory grief'... Google it. Also, the stress the OP is feeling may be some kind of shared bond with the parent who is also going through the same, you become sort of bonded in that way, so be good to yourself and it may reflect back on them; they may pick up on it. This sounds like bullshit, but I do sort of see it that now looking back. My stress became her stress and vice versa. I just didn't have the energy to push her through any more, both our batteries were wearing down and I didn't have the energy to appreciate the time with her I had left.

Don't get me wrong, we did everything, but love is infinite and my energy was not, so it was always going to feel like I fell short, I suppose.

I understand, really I do. My Dad - with prostate cancer, Alzheimer's, vascular dementia, a hydrocele, one leg (the other was amputated in 2017 after a nasty fall and broken ankle), pressure sores, catheter issues and a nasty infected cut on his leg (and breathe!) died 2 weeks ago. My rollercoaster has come to rest, and I am so glad he and I are off it, although I miss him terribly.

All I can offer is that you have to take care of yourself as well as you can. Build some fun into your life - it won't detract from the care you give to your parents, it'll just give you a bit more strength to ride the waves with them. Go out for dinner, buy something stupid and frivolous online, find a trivial hobby (mine is/was making bath bombs) that you enjoy. You need the resilience such things can give you. Talk to your friends and family - I could never have got through the past couple of years without the support of both. Well, actually I probably could have, not having much of a choice in the matter, but it would have been so much harder. Don't be afraid to laugh at some of the absurdities that crop up with dementia - no one will judge you for it.

Just let yourself be human - cry when you need to, laugh if you can, don't try to be 'strong' - there are no medals to be earned. Feel free to PM me if you ever feel the need - gawd knows there were times I wanted someone totally uninvolved in our situation to talk to. Sending a heartfelt hug, sod Mumsnet tradition!

I also agree with the ' list of fun things' my dad has advanced alzheimer's - no idea who we are. Sometimes shows more interest in mum than the rest of us but otherwise shows no ability to distinguish people. But we visit regularly and try and work out what might trigger an interest. Pictures of
Holiday destinations, talking about ex colleagues, pictures of pets, toys he bought us as children - all these have sparked recognition but took some thinking about what he might remember.

Have you got power of attorney for health? Can you sit down with their doctors and focus of symptom control , community based care, no Intravenous antibiotics, focus on their quality of life rather than sustaining life at all costs?
It is hard and distressing to watch your loved ones slowly deteriorate. Dementia in all its forms is horrible for loved ones .xx

I've been at the end of my bloody tether too. Pretty ridiculous to assume I don't know what I am talking about. Having sat for hours watching my sick parents presenting horrible never ending symptoms which I won't describe here, I found it helpful to have some alternative trivial shit to talk about with them to make them feel less like a vulnerable patient and more like the person I knew they were. They didn't have dementia and it's not clear from the original post that the op was dealing with this. So I responded based on my personal experience of a non-dementia sufferer who was dying slowly and painfully.
If the op thought I was tactless, I would be happy to apologise to them.

It's frustrating, I now live with my elderly mother so totally understand that feeling....We are the sandwich generation, we raise our families and then have years of struggling to care for our sick parents. I think you need to try to get some help, see their GP and ask for additional care to help you. Age concern are good for advice too. Try and make some time for yourself each week even if it's just a few hours, or your health will suffer too xxx

Bellini your post was massively tactless to a woman clearly at the end of her tether, as were a few other posters. It is good you have reflected on it.

That was a response to @RosaWaiting 's observation

My parents are both dead now. They were both very ill prior to their death for a long time. They didn't have dementia . I understand now that the op's parents do. It requires a different sort of care.
So, frankly, I do know what I am talking about having endured the misery of caring for sick parents who are fed up of being sick. And how important it was to try and retain quality of life for them and to find ways to give them control over a shitty situation.

@ffsitsshit I hear you and understand. Been on this journey for a couple of years, DF died and I naively thought hings would get better. They didn't as DM's issues rapidly became worse.
Dementia is a terrible diagnosis for both the sufferer (and boy do they suffer) and their family.

If you do Facebook have a look for a closed group Dementia Connection a non-judgemental support group of other in a similar journey, also RSAS dementia carers count either on facebook or here:www.dementiacarers.org.uk/?fbclid=IwAR1L_QfJBHypeOc7l1DrgxgXbbi3VkmZ7kg-Gne2RCu5RALJyeHQEv1y1eQ they offer brilliant courses which I have found very helpful.

bellini "Ask them to help you make a list of little fun things they like to do"

no offence bellini, but I'm not sure I've seen many posters on here who have a sick parent who could actually do that. Spending ages in hospital doesn't usually mean anyone having any mental space to find lists of "fun" things to do. The elderly person in the hospital is often distressed and terrified and probably wouldn't know what the word "fun" meant.

My very sorry, op. What a nightmare. I think it's deplorable that our society allows people to live like this. It's just cruel.

oh OP I am so feeling for you

my dad is dead but I wish he had been spared all that and I am desperate that my mother will somehow avoid it...and in time, me! I think I'd do myself in before I'd go through all that.

what is the situation medically? Are you in that awful place where doctors try to do everything in order to avoid being sued?

some honesty if it helps you....I always ask posters on this board how old their parents are. It's because I hope that if mum gets to 90 or something I will have been able to detach somewhat.

my dad said himself, in his last attempts to avoid medical intervention, "this is torture for the family". Do not be made to feel guilty by anyone saying "I want a parent back" - they have no idea what you are going through unless they have been through it themselves. and then if we want a parent back, we want the healthy happy one, not the one that spent ages yo yoing in and out of hospital!

I'm so sorry ffsitsshit, that's really hard. I am often grateful that my grandmother and father didn't get dementia and were able to eventually dig their heels in and say, "I have had enough. Let me go." Although in the case of my grandmother, her children had to argue with the doctors to get them to acknowledge her wishes.

Oh so sorry ffsitsshit so you have effectively lost your parents already and are living in the advanced dementia horror show where the body is still there but your lovely mother and father have gone. That is so hard and I know it feels so unfair. Please try and take care of yourself however you can, because this can destroy your own physical and mental health. Take care x