I would like to respond to the discussion between Laurie and Oldgeek about ventilator settings. I would suggest that even if you rely primarily on respiratory therapists or other professionals to manage your settings, it's a good idea to become familiar with them yourself as caregiver (or as PALS if you are able to manipulate them).
I was one who had only a vague notion of how the settings on the bipap worked. My husband used an Astral 150 for about a year before he died. He was only using it overnight until the last few weeks, when he started wanting it occasionally during the day.
As it happened, Steve had a sudden respiratory emergency one evening and for reasons I still don't know for sure, he simply couldn't catch his breath. He had had similar moments that had been relieved by using the cough machine, putting on the bipap, and adjusting the bed height, but this time none of those seemed to be helping.
I thought maybe some kind of adjustment of bipap settings might help, but realized I had absolutely no idea what those adjustments should be or how to do them, and on a Sunday evening I wasn't going to be able to find help quickly. I called 911 and then also realized when the EMTs came that I wasn't clear on what I should instruct them about use of oxygen and how the bipap fit into that picture. I was aware of concerns about CO2 buildup with supplemental oxygen but wasn't sure how it applied to a major emergency situation.
I spent a lot of time educating myself about everything to do with ALS over the almost 4 years my husband lived with it, and thought I was pretty competent. But when there was a major crisis I felt unprepared. I don't know that anything I could have done differently would have changed the outcome, but I can tell you that I regretted being at such a loss over possible bipap adjustments and over specific instructions to give the EMTs, at a moment when going to look things up or call an expert was simply not possible. I know I took excellent care of Steve throughout his illness but I felt, justifiably or not, that I failed him at the end, and that is not how you want to feel.
So my suggestion is, even if your PALS is not experiencing major respiratory problems and things seem pretty stable, if you have a respirator it's a good idea to take Laurie up on her suggestion to teach you how to make adjustments, or have your respiratory therapist or DME provider train you. You may never choose to do it yourself during the normal course of things, and may never need to, but it can't hurt to have more tools in your toolkit in case of emergency. We all want to feel we have done everything possible for our PALS and even if it had made no difference, I would have felt better if I'd been able to try making adjustments rather than feeling helpless.
