A while back I wrote about the BiPAP machine that mom got to help her breathe at night.  We finally found a mask that worked ok because the nose pieces weren’t working at all, but today she told me she isn’t going to use it.

My mother’s greatest fear is suffocation.  Apparently, if you don’t get enough oxygen, carbon dioxide builds up in your brain, diminishing certain sensations and fears.  If she uses the BiPAP, she’ll have oxygen pushed in and carbon dioxide pushed out.  If there came a time when oxygen had to be turned off, she would know exactly what was happening.

She doesn’t want to.

So she isn’t going to use the BiPAP.  When her breathing gets so bad that she stops, she’ll just stop.  If they’re right about the carbon dioxide, she won’t have the same terrifying experience of suffocating.  She doesn’t want to live on a respirator.  I can understand.  I wouldn’t want to either.

I’m accepting this as best I can.  It reminds me more strongly that at some point, ALS is going to win.  Even if a cure was magically found now, the damage that’s been done couldn’t be fixed.  As much as I’d rather her stay around for several years or more, I’d rather she didn’t have to live in fear of how the end might come.  If she’s convinced that letting carbon dioxide build up is going to not only help her when she dies, but give her peace of mind before then, I can’t argue with that.  I just want her to be happy.

I guess that’s one of the things we all have to learn eventually.  The selfish part of me wants her around as long as I am, but I know my mother.  She has a definition of what life is.  And when I think deeply enough I realize it’s the same definition that I have.  I don’t think I’d want to be completely immobile, unable to breathe, talk or eat on my own, and live in constant fear of suffocation.

So there won’t be any more updates on how to use the BiPAP.  If anyone wants to use one and wants some advice, feel free to contact me and I’ll tell you how we used our for several weeks.  I don’t know how helpful I’d be.