if you change your mind, you change your mind
How would you articulate that if robbed of the power of speech by dementia?
The thing is, people tend to base their decisions, about whether they would want to be alive with a certain illness, based on their outside perception of it.
Having worked with dementia patients, I have never known one person with severe dementia want to die. People may articulate this at diagnosis, but by the time they are so deeply affected by it, that they would have previously imagined their existence to be intolerable, they often do not want to die at all.
So, there would be a risk of some people with dementia having an advanced directive, getting to the point where they previously said they would wish to be euthanized, and then not wanting to die. BUT also lacking the mental capacity to articulate that they have changed their mind, or even the speech to do so.
This ISN'T about the horror of those of us who, having witnessed loved ones suffer something like dementia, think "I don't want that if it happens to me". This IS about how the person feels when they are ACTUALLY IN that position themselves.
I used do think I wouldn't want to be alive if I was disabled, based on what I had seen others go through. Guess what? I now AM in that position and don't want to die.
It scares the shit out of me to wonder what would happen if I had had an advanced directive in place, and my disability had robbed me of my ability to communicate. I very much want to live, with a condition I thought I would rather die than have.
I don't currently feel selfish for being a burden on society (though I feel guilt for my family) because society has no other choice. Euthanasia isn't legal, so society has to suck it up that people like me exist and drain resources.
Do you think I would get PIP and all the other support if I had had an advanced directive in place I had chosen not to follow? Don't be naive.
Do you think society would be willing to care about helping my family shoulder the burden of looking after me, if euthanasia was possible? Of course not.
The pressure on me to go through with it, both financially, practically and societally would be huge.
It pisses me right off when people haven't been in any remotely similar position themselves pontificate about "what they would want" if something happened. Until you are there, you DON'T know.
My daughter has a mum who can love her and who she loves, and it turns out that THAT is a far bigger reason to live, than my disability is to die.