So sorry Gil.
I truly can't imagine what you and your mum go through.
I only know that I was horrified when Chris (with FTD) started talking about living 20 years on a vent. Then found out they do not vent PALS in Australia and I was honestly relieved.
I would never say no one should vent, for some it is a very viable proposition. But it is not something to be entered into lightly either, especially without full consideration of everyone and everything involved.
I believe it is why PALS and CALS need to check it out thoroughly fairly early (after the shock of diagnosis has worn off), and really talk through all sides of the situation.
ALS is so unpredictable, that a sudden emergency can see a PALS vented without full information, or a CALS feeling they have to make a decision in crisis without having discussed the implications fully beforehand and knowing their PALS full wishes.
Has anyone talked with your mum about her wishes regarding turning the vent off, or does she want to continue no matter what?
There are PALS who vent and live very productive lives, but then there are some in misery too