clogged feeding tube and now COMA

[katballoo]

My first post though I have been reading these for years..
My mom is about at the end. She was in the hospital last week with pneumonitis for three days and then again the day after they released her for another breathing "episode" where we almost lost her. During this time she was in the hospital she didn't have her bipap though they had her on oxygen.
She had severe diarrhea from the antibiotics and after a week of that, finally they got it under control (Friday). Mom was doing slightly better and was around and writing yesterday. Hospice had their first visit Saturday. She fell asleep Saturday afternoon and has not awakened since. She is in a coma. Coincidentally her feeding tube is now clogged (This has never happened!). I have no idea how this happened or if someone (she has 4 caregivers and now hospice) forgot to flush the feeding tube..
I called hospice tonight after I arrived (8 hour plane ride) and they said if she is in a coma it's better to not fix the feeding tube or she will "Drown in her secretions" which is worse than letting her just go..They say don't give her any nourishment at all.
I guess I wonder if after all she's been through this past week, she's just terribly dehydrated and weak and therefore "in a deep sleep".. did she really just slip into a coma just like that? is this what happens? could she come out of it? what do you guys think about not fixing the feeding tube? my heart tells me that's crazy. But the hospice people say i'd be making a big mistake and she would die a painful death and drown in her secretions.. Really?! What do I do here? I have to make a decision in the morning (a few hours) and I have no idea what i'm doing!
Someone please help! Has anyone been here?
What do I do?

 

[bigmark1954]

Sorry to hear about your mom Kat......Listen to your hospice team! Your mom is at the end of her journey.
I went through this with both of my parents...my mother passed just two years ago. Her final decline was exactly the same......she went into a deep sleep and lasted about three days. I struggled with hospice and wanted them to give her IV fluids for dehydration.....but knew she was a the end of her journey.
Don't panic, as it is a natural progression and she is tired of fighting the battle.
Take care.............

 

[lgelb]

So sorry for that you are going through, Kat.

If your mom did not have her BiPAP in the hospital, her lungs would have worked more than they can support (assuming she was on BiPAP before all or a lot of the time) and that could contribute to the state of consciousness. I am assuming she is on BiPAP right now?
Also, as you say, diarrhea leads to dehydration unless her fluid intake was adapted accordingly.
My question would be, when she was last alert, was her quality of life in the foreseeable future what she would want to go on with? What were her last instructions/expressions regarding future hospitalization?
The answers would be the answer to your question.

 

[Barbie]

So sorry Kat--what a tough decision you have to make. I wish I knew more about peg tubes but I really do not. I will be thinking of you and your mom as you face this tough time.

 

[TGB1]

Kat - I'm so sorry u r dealing with this. How old is your mom? And as someone else mentioned - what was her quality of life before she ended up in the hospital? My mom is 87 - and no matter how painful it would be for me - I would let her go.
Try to be strong, Trina

 

[zoohouse]

Kat I am so sorry that you are at that time we all dread, but you are there and that is the most important things. I agree with the nurses about hydrating your mother right now. Often near the end the bowels stop functioning so giving her fluid that way would not be absorbed. I know that most believe that dehydration would be an awful way to go, but it truly isn't. In 33 years of nursing I have given IV fluids to people at their end, and have stopped IV's and actually found that the ones that do not get fluids are actually more peaceful, as long as their mouth is kept moist. Often the IV fluid just goes into the tissue making them swell, and not into their cells where it is needed.
The end will come, whether she is sleeping, in a coma, or working hard for air, which do you think is easier. Remember the last thing to go is our sense of hearing, so talk to her. Tell her what the weather is doing outside, what the news is in the world, or about anything that she was interested in. I use to tell jokes to my comatose patients, and have had 2 that came back, and said that they looked forward to me doing their morning care because of the jokes. They heard them and they appreciated them. Don't worry if people think you have fallen off your rocker for having a one sided conversation. Read to her, and play her favourite music, rub her feet. My brother managed a smile at the end when we rubbed his feet. When he went it was with us beside him, loving on him. Can you think of any better way to pass out of this world?

 

[MaxEidswick]

Hi, Paulette --

>Remember the last thing to go is our sense of hearing, so talk to her ... My brother managed a smile at the end when we rubbed his feet. When he went it was with us beside him, loving on him. Can you think of any better way to pass out of this world?

This reminded me of when my brother Robert was at this place and my wife, Sandy, would scratch his back -- what a wonderful gift.

Kat, you seem very centered and prepared for this difficult time. If you have not seen the YouTube video Part 3 of the ABCs of ALS, you may also find some comfort in it. Also, the https://www.alsforums.com/forum/general-discussion-about-als-mnd/24845-difficult-question.html thread in our forum here ...

Max