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Bi-pap - King Rat
Private Life
Mom's bi-pap machine stopped working this morning. Hospice came out and fixed it later today. That doesn't really concern me that much. What does concern me is that while mom was laying down, she could barely breathe without the bi-pap. She can breathe if she's sitting up with her brace on, so that's what they did til hospice fixed the machine.

I don't know if that means death is imminent. It seems to me that it's pretty serious. If mom is asleep and the bi-pap stops working for whatever reason (broken, settings off, power outage), then it could happen. This morning it happened when she was waking up. Or awake already; she didn't sleep much last night I'm told so she could have just been up anyway.

Does it mean she doesn't have long to be able to breathe even with the bi-pap? I don't know.

I'm pretty sure that it does mean that if paramedics are called or she is at the hospital for some reason, her breathing is at the point where they will put her on a ventilator. She doesn't want ventilation, but she won't sign the simple health care directive that hospice has. She still wants everyone to read and follow the advanced health care directive, which I know won't be used by paramedics and probably not by the E.R.

I'm not too upset at this point. Even after I found out this happened I decided to go have coffee and hang out at the Black Drop before visiting mom today. I only was bothered when I was trying to decide whether to tell Gram and Gramps. I won't. Not yet. But thinking that I may have to call them soon and tell them to visit for their last time got me teary for a bit. I did tell my siblings.

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a_muse_d From: a_muse_d Date: August 20th, 2008 03:13 am (UTC) (Link)
could she sleep reclined instead of laying down all the way, or must she be sitting entirely upright to breathe without the bi-pap? this sounds like lots of not fun :\
gkr From: gkr Date: August 20th, 2008 03:17 am (UTC) (Link)
She's been sleeping reclined for a year now. For 6 or 7 months in a hospital bed in the living room. She has to be fully upright to not have trouble breathing.

And yeah, loads of not fun is a good way to put it.
gargoylettelc From: gargoylettelc Date: August 20th, 2008 06:35 am (UTC) (Link)
I'm sorry! I can only imagine how hard this is for you. *Virtual Hug*
Unfortunately, if she stops breathing, and 911 is called, they will take all precautions to save her life. Now, paramedics don't carry ventilators per say, but they might intubate and her away, then she would arrive at some hospital where she would be on a vent. If there isn't something obvious like the POLST in plan site, they aren't going to read anything. She really needs to sign that bright green piece of paper to have her wishes honored. If you have not talked to the Hospice RNs about this upcoming situation and possible scenarios and what you could do, you should. They could give you some good guidance, and also talk with your Mom about possible outcomes. The hospice RNs I work with do this a lot, and families find it helpful for planning and how to react to situations.
As far as contacting family, from other ALS patients I have seen and what you are describing, I would suggest calling family. No one has a crystal ball. Early is always better than too late, I would suspect.
gkr From: gkr Date: August 20th, 2008 06:47 am (UTC) (Link)
Mom won't sign the green paper. I've been through it with her. I'm hoping I can at least get her to do the ventilator part of the green paper.

If not, there are two possibilities. We get lucky and she never does go to the hospital. Or that I can get to the hospital in time (I have a shorter distance + a freeway) and they listen to me (I have her advanced care directive in my car for this possibility).
burgunder From: burgunder Date: August 21st, 2008 07:35 pm (UTC) (Link)
Just now catching up on LJ. I'm sorry, Phil.

I got nothing useful to say except I love you.
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