This thread is SO important.
There is no right or wrong answer. Some PALS lose their breathing abilities early and if that is supported by a vent, continue with quality life. Some PALS however lose so much before the vent is discussed and as Debbie says - they are simply kept alive. Well, what does 'alive' mean I would think privately.
I never shared this before, because I never would have wanted my Chris to read this, but of course he is now gone.
When first diagnosed he was adamant that he wanted quality of life, we discussed what that was and he asked me to help him when it became too much. I totally agreed and assured him I would.
After a couple of months he began talking to other PALS on fb, many of them who were long term venters. His FTD was setting in too I would remind ...
He began to show me photos of these PALS and say how it doesn't look so bad and that he intended to become the longest living PALS in history.
I was so horrified and inside I was screaming like I'd been thrown over a cliff!
I discussed it quickly with health support people here and discovered that in Australia there is NO CHOICE TO VENT for ALS. I calmed quickly knowing that it was not to be. Sadly he made a lot of noise about what a great idea it is even to his own children. But he never told them later when he discovered it would not be possible here. They asked me about it just in his very last weeks, thinking it must be time it was going to happen! One daughter was devastated that her father was going to die very soon as she had just believed he would live on for many years, and I was left the bunny that had to explain it all to his children. None of them had ANY idea what being on a vent would mean with the type of progression he had.
If someone has no speech, no swallow, no arms, no legs, high degree of spasticity and pain, why would they want a vent?
PLEASE PALS here don't think I am saying no one should vent. I'm saying a vent should only be considered if the person vented will have LIFE, not just be kept alive in a locked in hell.
He made me interpret for him to the last neurologist we saw, and I was so embarrassed when I had to say: "Chris says the only reason they do not vent MND patients in Australia is because they do not care about them and just want them to die and go away" (gotta love FTD)
I know now, as he progressed that he would have possibly refused the vent because he learned the reality of the horror that he would be kept trapped in. But with FTD I could be wrong. He did not have bipap because he would put everything off until the last minute, (because he felt that this was how you 'fight' the disease) and by the time he agreed to it (2 weeks before he died) he was far too unwell to tolerate the whole process of sleep studies and adjusting to a mask with high saliva issues and no hand function.
I also agree that making choices about the hard decisions of peg and vent has nothing to do with GIVING UP. My Chris felt he was "fighting" to the end. He was. He fought against everything that could have given him better quality of life, he fought against me in very cruel and spiteful ways, and just fought for the sake of fighting something. In fact, he gave ALS the chance to run amok and progress as fast as possible because his ways of fighting only made things worse. He could have conserved so much energy to use to enjoy what he had, but he saw that as 'giving up'.
I strongly believed in letting him control what he could, regardless of my opinion on the choices. He would often say to me - it is MY disease, it is happening to MY body. So my choice was to a) take his control and dictate how I thought it should be, or b) to let him choose and accept the consequences. At least I have a lot of peace now that he is gone that he did it his way and I supported him. I am extremely thankful that Australia does not vent and that choice at least was made for us.
