- Joined
- May 29, 2014
- Messages
- 1,013
- Reason
- Lost a loved one
- Diagnosis
- 04/2014
- Country
- US
- State
- VA
- City
- Poquoson
I'm now at the point of needing to gain a better understanding of the Pros/Cons of the feeding tube and vent. My wife's current disposition, is to not do either of them. She is quite open to some type of cough assistance.
At this point in her progression, she's able to eat (at least to chew and swallow... though her ability to get a fork or spoon to her mouth won't last too much longer). I am beginning to notice that her voice is getting slightly weaker. It doesn't seem that she notices yet (and unless she comes in here and sees this thread, I'm not yet inclined to bring it to her attention). As long as she is sitting upright, she doesn't have much difficulty breathing. If she leans back too far... or lays down... she gasps for air. She uses a BiPAP during the night (what a wonderful machine) but nothing currently during the day.
As her last lung function test had her listed at 45%, I'm not sure how much longer a feeding tube will remain an available option for her. She equates not being able to swallow as being equivalent to not being able to talk (i.e. she expects they will both arrive in unison). She is determined (at this point) to not make any decisions that will prolong her life... especially when "quality of life" has become minimized (i.e. can no longer move, eat or communicate).
Difficult as it may be, I'll support Darcey's wishes. It is something that we promised each other. I just want to be sure, however, that her decisions are equally founded upon good information and knowledge... and do not become something regrettable at some future time because she "didn't know that".
I would appreciate hearing what you amazing people think, know and might suggest... so that I can begin to form my own knowledge base and opinions... and subsequently help provide good information for my PALS.
Thanks!
Jim
At this point in her progression, she's able to eat (at least to chew and swallow... though her ability to get a fork or spoon to her mouth won't last too much longer). I am beginning to notice that her voice is getting slightly weaker. It doesn't seem that she notices yet (and unless she comes in here and sees this thread, I'm not yet inclined to bring it to her attention). As long as she is sitting upright, she doesn't have much difficulty breathing. If she leans back too far... or lays down... she gasps for air. She uses a BiPAP during the night (what a wonderful machine) but nothing currently during the day.
As her last lung function test had her listed at 45%, I'm not sure how much longer a feeding tube will remain an available option for her. She equates not being able to swallow as being equivalent to not being able to talk (i.e. she expects they will both arrive in unison). She is determined (at this point) to not make any decisions that will prolong her life... especially when "quality of life" has become minimized (i.e. can no longer move, eat or communicate).
Difficult as it may be, I'll support Darcey's wishes. It is something that we promised each other. I just want to be sure, however, that her decisions are equally founded upon good information and knowledge... and do not become something regrettable at some future time because she "didn't know that".
I would appreciate hearing what you amazing people think, know and might suggest... so that I can begin to form my own knowledge base and opinions... and subsequently help provide good information for my PALS.
Thanks!
Jim