I dream that they will die and I feel bad

[realdeal7393]

I have a DM and DMIL in care homes. Before this, we’ve had ten plus years of crisis upon crisis, trauma after trauma.

Last week was another horrendous shit show of a week. I’ve realised that I’ve been waiting for a ‘stable period’ for over a decade.it never ever comes. By stable I mean no urgent, sickening, traumatic, distressing event happening for about 3 months. It’s NEVER gone more than a month without some heart stopping hideous shit show to sort out. They both have zero quality of life. They have suffered for years and years and years.

This morning I woke up to the realisation that I’ve been hoping they both die. I even walked into the fields and looked up at the sky with tears streaming down my face and begged the universe to release them.

So sorry but i get you. I wouldn't want to be a burden to my family either and hope for a quick way out. I do wonder when I'll get the phone call and i await with dread and relief. It's stress either way.

I keep thinking of what they do in Japan and leave them in a forest. Dying alone from exposure would be horrible but also peaceful? Not that I'll ever do that to someone obviously. I just wonder for myself, if that would be a "good" way to go.

I would say the majority of people both want that for themselves and the people they love. I’m so sorry, don’t feel guilty.
This is why I back assisted dying, I want it once I have no quality of life.
Practically, do they have DNR’s in place?

Yes they do. But every time one of them gets an infection, the doctors emotionally manipulate us into agreeing to antibiotics - and they drug them back into carrying on. DNAR - I think it’s unlikely to come into play though. Least not going to prevent more daily never ending pain, indignity, terror and suffering. I can’t see their hearts stopping, it would be a blessing if they did.

I feel your sentiments and acknowledge I feel the same. Death will be the only release from care duties and that’s either her’s or mine. I will not put this burden on my children and will be in control of my end. Thinking of you op and completely understanding of how you feel. As a nurse I always say just because we can cure doesn’t always mean we should.

At least they’re in residential care and you’re not trying to manage care in their own homes.

I hear you OP, and I’ve only been handling it at a high intensity for a year at home and six months in a care home for both DPs. Thankfully due to their ages I am hoping this won’t go on for many years, particularly for DM who has lost her speech, sight hearing and is bed bound. We had a lovely weeks holiday a few weeks ago, marred only slightly by the care home telling us DM probably had a stroke and did we want her taken to hospital which kind of ruined the joie de vivre rather ( we said no and it turned out to be a UTI probably).

DH takes the care home calls, my nervous system (not to mention career and health) was shot after a year where they shouldn’t have been at home.

Please try to say no to the ABs next time. It’s cruel to deny people nature’s release. I intend to decline flu and covid vaccinations once I reach 75 or 80 - will see how I feel nearer the time. Honestly it’s inhumane for everyone to keep people alive when their body and minds have given up.

Do they have capacity still? Do they have respect forms? Would it be possible to have a conversation with them and their gp being present when they are well to fill in / update their respect forms to include what sort of care they want to receive when they get an infection in the future (oral ab / iV ab / pain relief only)
And do you have POA for health? If you are clear on their wishes to treat or not treat and those wishes are written down, you would be in a much stronger position (both emotionaly within yourself and practically) to advocate for what they want.

Most Drs don't want to allow people to die. They want to carry on treating past good sense, as long as there's another drug to perscribe. Are there any hospice nurses associated with the care homes who could help advise and advocate of their best interests with the gp?

I completely understand this, and empathise - I’m sorry for you and your DM/DMIL that you’re all suffering. It’s such a complex range of emotions - I want their suffering to end and then also feel so guilty because I know it will end mine as well because it is so exhausting caring for them and I desperately want my life back. I feel wretched just typing that.

My parent has capacity and have refused a care home and treatment for a terminal illness. Their pain is controlled, but they’re 90% bed bound, don’t leave the house, take no joy in life and are quite literally waiting to die. They don’t want to watch TV, chat, read, or anything - they sit stating into space and it breaks our hearts.

I’m staying with them, and some mornings I go in and hope that they’ve passed in their sleep, and feel so selfish and guilty at the same time as knowing it’ll be a release for them. They’ve had a full and happy life (their words).

I will not be ending my days in the same way and hope that if I have dementia or similar, I’ll know in time to do something before I lose capacity. I’m sorry OP, it’s really shit all round.

It's so cruel to make people live like this when they have no quality of life. We had to be very firm and refuse vaccinations and antibiotics in the last year as it was just prolonging their agony.

Absolutely it is the curse of modern medicine that we are treating things where there is so little quality of life. Just because we can treat does not mean we should.

It is not progress and @realdeal7393 I completely understand your feelings.

I hear you OP. We managing crisis after crisis with MIL who is hanging in at home with carers, she’s lonely and miserable as her mobility and senses have declined. She refused to go into hospital after each fall and refuses to go into a home which would keep her safe. It’s utterly rubbish for all concerned. My poor DH is just lurching from one phone call to the next.

I’m so sorry you’re going through this. I find doctors wildly inconsistent in this kind of stuff. Some want to treat everything, some (in my experience, the older ones, but maybe that’s just them) are much more pragmatic about not prolonging suffering long term.

My own DF died earlier this year. He wanted to die. He had Alzheimer’s and things were going downhill fast. We didn’t get vaccinations, he caught flu, they wanted to hospitalise, do all sorts. We rejected everything (despite some serious pressure) and he died quickly at home from pneumonia. At the time I felt awful about rejecting everything. However, I now feel only relief. I can only sympathise OP. It was a dreadful time.

I’m so sorry for what you’re going through, OP. My Dad asked me to end his life three years ago and it is horrible to see him now, in a home, still existing. I don’t think it is unusual at all to wish such hard times to end so that everyone can be at peace.

I also just wanted to mention, re the idea of old
people being left in the woods in Japan - this is categorically not what happens so please don’t anyone take this idea as truth (look it up if that helps).
There is an old folklore story about this happening, but thinking this is an established behaviour is similar to thinking that people in Germany leave unwanted kids in the woods or worse because of Hansel and Gretel.
The Japanese have traditionally had a far greater sense of filial duty than people in the west - it’s probably why the story about parental abandonment was so horrifying to the Japanese that it made it into folklore - and my personal experience is that no one I know has even put elderly relatives into care, instead looking after them at home until they pass away, although I imagine this will change as the ratio of elderly to working people increases.

OP, I totally get this - my Dad went on and on for years.

But I think you really need to sort out, in your own head and with your DH, what you're going to do next time they need antibiotics or interventions. It's ok not to bow to pressure and refuse treatment.

My mum was the NOK with my Dad and didn't refuse anything (vaccinations, treatment) and I ended up completely resenting her for extending his life when he was clearly in pain. You need to speak to other family members, honestly, too.

Do you have health and welfare POA?

It’s the oral antibiotics they keep giving them every time they get the smallest infection. It’s basically presented to us as this is what they need to be comfortable. But is it?

I get it, it's a hard moment when you realise that today is as good as it's going to get. We are also lurching from one crisis to another. Don't feel bad, you want release for them as well as for you.

I am completely with you on the treatment at all costs thing, it's just cruel.

I'm not a medic, at all. But previously a lot of older people died of pneumonia, which was referred to as the "old man's friend." Afaik the antibiotics stop this happening.

If the docs think a patient is definitely going to die (and the "get the family in in case it happens" seems to have a very different bar to them actually medicating the person as if they're going to die) they get put on morphine.

Is there a more local GP that sees them often you could speak to about an end of life pathway?

My Dad's EOL wishes were completely garbled so that didn't help either, but if they've got something written down that'd be helpful.

But I remember feeling like screaming when I got called into hospital for what I'd been told was an EOL scenario and when I got there the nurses were hooking my Dad up to a drip for ABs - he'd already been ill for years and couldn't walk, was incontinent and couldn't speak. He went on for another three years. It's not the medical staff who have to keep visiting someone like that after they've been kept alive.

I think it might keep them more comfortable in the moment but anything beyond that is just prolonging the inevitable.

You will need to brace yourself and have your words ready when the next call comes. We had similar. However we were insistent that comfort was far better than yet another distressing trip to hospital with various pokes and prods and medications.

Doctors are obliged to administer all life extending treatment. So, they will be doing all they can.

I think we need a national conversation about all this. It is carers and the distressed elderly patients who suffer when ‘medical heroics’ are deployed endlessly. Goodness knows what all these intravenous ABs are doing for antibiotic resistance, never mind the horrific diarrhoea and delirium that can result for the patient. It’s all so undignified.

My mother was given ABs for a small rash on the back of her neck. Wtf. Multiply that by the thousands of other residents in CHs and we wonder why bacteria are becoming antibiotic-resistant? The GP seems to be on speed dial in her nursing home. It is really so senseless as you say.

apparently it’s cruel to ‘let’ someone pass of pneumonia because it’s like drowning. But I can’t think of any other condition that is not unpleasant to die from either. Isn’t pretty much all of it painful in some way because, you know, the body is dying. Name a condition that is seen as a ‘good death’ and I’ll try and manifest it in my poor suffering loved ones. Is it reasonable to try to pick and choose what finally carries us off? Is pneumonia worse than staying locked in relentless terror and pain of the chronic conditions you have suffered for over a decade. I just don’t know any more. I’m so confused. And beaten.

Yea to GPs being on speed dial from care homes. Seen this a million times.

Years ago, I'm sure all deaths from things like pneumonia were horrendous - yes it is appalling to witness the body shut down in this way, and the lungs congest and fail. But someone elderly with advanced pneumonia now (say after a severe stroke) who is on an end of life pathway, is heavily sedated and given morphine. I know I'd prefer it to the prospect of years with Alzheimer's.

We have just completed another Respect form and stated that we will accept treatment that provides comfort, but no treatment to extend life. That makes the vaccine choice tricky. Speaking with the Dr, we decided to go with vacines from the comfort angle and because my mum always, always had her vacines. The Dr says there is no right or wrong answer. Its very difficult OP.

Last winter for one of our relatives we said no to any more vaccines. They did get a chest infection. We said no to oral antibiotics to the care home. The care home then rang the GP. The GP then rang us to manipulate us into agreeing to them. The relative bounced back to continue their horrendous, suffering existence of advanced dementia and being sedated on a high dose of antipsychotics. They spend 24/7 slumped in a chair. It’s getting to the point I’m having panic attacks because I’m just devastated at the length of time they have suffered, and the system just seeming to want to extend their suffering. I feel like I’m suffocating in grief because I can’t say goodbye but I can’t say hello anymore - because they aren’t even here really. I am extremely anxious this could happen to me too. It’s just too much to carry recently. I’ve never known such indignity and pain and trauma last so long and it has made me hate doctors and profit run care homes and well life really. Is this the end we all get?