Going to read Aintree in full carefully I think. I really don’t understand how and why this decision is relevant to Mums current circumstances.I do understand that medical treatment is not always appropriate to give even if it’s wanted & that that’s a clinical decision,but this seems very premature.

If she is expected to survive decannulation, then shouldn’t this be her decision re future when she regains capacity? I don’t know if I’m in denial or whether I’ve not grasped something really essential about her condition? But my dr brother went home & seems to be not concerned she is going to die?

It’s not clear to me why when they tell us she’s not dying, has been breathing for days without ventilator support, and is expected to recover to some new baseline on a ward soon, that this is a necessary decision at this point in time?

They say don’t know for sure she wouldn’t get back to life with a tracheostomy if decannulation fails, but they’re writing off the possibility of even trying to get her back there. A 60yo woman, cos of frailty, that’s not let’s forget was caused by 2 decades of iatrogenic harm in the first place!

They don’t seem to be able to explain how their undignified death and medical intervention concerns outweigh our right to life even with severe disability & extensive care concerns.

best interests about treatment escalation- not clear why this discussion is necessary now at all). Seems very heavy handed, and very much like icu drs are discharging soon to ward and deciding she’s not to come back again.

Even the drs say it’s not an absolute, re recovery prospects and predictions, but they are very keen to write off life with a tracheostomy. (Mum doing ok physically and expected to recover this time but we are being consulted re

my work and life that can only be remedied by a wider and higher Justice. St Rutilio Grande, my fellow catatonic, pray for us! St Dymphna, pray for us! Paul Tillich, another great mad Lutheran theologian, pray for us!

given me by a source outside of my self. A uniquely frustrating time for the vocation question to be rearing its head again, having thought I had put it away long ago, but Lord knows that the only way I have got through any of this is through faith- that the injustices I am witness to in

We finally get a psychiatrist who listens, and she’s going to try everything else possible first, but I can see how this will end already because they might not have a choice except to reinstate the very medication that caused the harm. I am holding on by the last threads of my strength;

argument across- that her quality of life was just as important as risk reduction, and that her physical functioning is just as important as her mental one. And we did get that across- the iatrogenic harm finally recognised.

I don’t have words, truly, to put across the despair at watching someone take a medication that slowly destroys their physical wellbeing whilst making barely a dent in their mental symptoms. I always said when we entered the realm of best interests, we would finally be able to put the holistic

Sadly not. Still couldn’t extubate. Lung improved tho so hopefully tomorrow. Just a waiting game.

Thank you Alex. Will take a look. I think she’s likely to need a lot of physio. Unfortunately they weren’t able to extubate today as planned as she wasn’t waking up. Hopefully tomorrow & we can avoid tracheostomy. Over a week on a ventilator a long time.

Writing, even if no one is listening, helps somewhat. Shouting into the void better than not shouting at all. No wonder my ex left after having no hope left for me. I do suppose this is a no hope situation. The problem of evil, pain and suffering- a theodicy even Pandora left unarticulated.

Functional reserves and limited interventions being discussed for someone in their 60s is a shame to the iatrogenic mental health system that has decimated her physical health. My mental health is a shame to lack of familial carer support. All this a waste of life, health, potential.

Worked out this is 5th time in as many years mums been seriously ill in hospital, her 9th time in a decade, and 3rd time in itu. My dr brother tells me this is more serious, but I have a feeling this time, this time at least, she will pull through.

unnerved nervous systems. And it’s stifling hot- like the air is holding its breath alongside anxious visitors. If purgatory had an aesthetic, this is it. (Some place between a haven of not dead, and a hell of lost forever, without a goodbye.)