No longer wants bi pap

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Janie'sdaughter

New member
Joined
Jun 15, 2012
Messages
4
Reason
CALS
Country
US
State
Ky
City
Lexington
Hello everyone. I'm new to the forum. I really appreciate the collective support and wisdom I have read here. My question is about Mom's bi pap use. Until recently, she was very dependent on it and wanted to use it almost constantly. Now, suddenly, she no longer wants it and seems content and does not struggling without it. She's pretty far long in her ALS and also has FTD. Does this sudden not wanting the bi pap mean anything? She is not sedated.
 
If she's not struggling to breathe and is comfortable then I'd just let her be.
 
Comfortable is good.
 
I'm with the others. Sorry this is happening.
 
Thx for the validation of my instincts. I'm truly feeling my way here and this forum has given me great answers to things like oxygen/CO2 issues, downsides to hospice, etc. I just don't want to "insist" on the bi pap thinking its only her impaired exec. functioning due to the FTD which is making the decision rather than what might be "best" for her longevity according to my judgment. I want her to be content and happy and now the bi pap just seems to keep her antsy- bi pap on, bi pap off, bi pal on, ad finitum until I tell her " it's,okay Mom to leave it off if you don't want it right now."
 
We struggled with that for about 6 months before we got the trach, and let me tell you it was the best thing. Then he lived with a trach, peg tube and superpubic catheter and ventilator for another three years. Which he could not have done without the trach and vent. More importantly these things made him comfortable right up to the end.
 
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