We've always been very open about end of life/ dying in our family, and all feel the same. Years ago when my mum set up EPA and updated her will, she also did a Living Will, now known as an Advance Directive. In it, apart from the general DNAR type things, she states that if she lost mental capacity or became so ill that she would be reliant on others for the rest of her life, she did not want to receive any further medical treatment. Both of those conditions now apply.
She was quite clear about her wishes and often reminded us saying 'If I ever get like that, shoot me! If you don't I will come back and haunt you!'
Of course, no one expected dementia and horribly, all the lines get blurred. Mum, in a care home for 2 years, does not have capacity and will need 24/7 care for the rest of her life. Yet otherwise she is fairly healthy. When she gets a UTI, I start to dither about her having antibiotics. So far I have OK'd it though technically it's going against her wishes. My concerns are that she gets really difficult with a UTI and I don't want the home to give her notice then have to move her. (That's highly unlikely but I can't risk it.)
It's on her care notes: no meds, no hospital, DNAR, care home is chosen place of death, etc and I had a long talk with her GP about it. But the guilt is enormous. I wouldn't dare ask mum's opinion on the Living Will now - one day she'd be all for it, another day she might say, 'Don't let me die!' I have no idea so I don't ask and will go with what I knew to be the opinions she always held about quality of life over quantity. She once told me her line in the sand would be if she could no longer wipe her own bottom. She is way, way past that stage now and has - in my opinion - no quality of life.
However... carers and even nurses aware of the situation think I am an absolute monster and that I just want my 'poor mother' dead. I hate their judgements when they know nothing of our family, our history, dynamics, etc, etc. They just say 'Your mum's lovely!, or 'We like your mum - she's feisty,' and that is enough for them. Well no, actually. It really isn't that simple.
Rant over. Sorry.