Painful Question

[Gill'sgirl]

Hi friends, my mom has decided to stop taking hydration and nutrition through her feeding tube. Has anyone here taken care of a PALS who's made this decision? Does anyone have insight into what we can expect?

 

[Ms. Pie]

Hugs to you!

 

[hopeangel66]

contact a hospice that offers palliative sedation. going without food or water this way is quite peaceful.

 

[brooksea]

Like hopeangel66 said, speak with the hospice team about medication to make her comfortable. I will be thinking of you and your family during this time.

 

[Ms. Pie]

Thanks for your advice hope and CJ!

 

[hopeangel66]

i wouldn't consider this suicide at all or in any way. she wants to let the disease run its course without artificially interferring (peg tube, vent, etc) it's her decision and no one else's, i back her all the way and wouldn't have even gotten the peg. going as nature intended instead of dragging around tons of equipment and machines or becoming vegetative as is seen in many you tube videos is the way to do it.

 

[Ms. Pie]

People that choose to be vented aren't vegetative Hope. Where did you hear that? I have a good friend who is vented and trached and he's very happy and engaging. I have several FB friends that are vented and trached. I do agree that it's a personal choice but advanced ALS doesn't put people in a vegetative state.

 

[Gill'sgirl]

Thank you all for your thoughts and good wishes. We do not consider this suicide; we consider this a positive choice, one of the first things that has been fully in her control for some time. We do have hospice on board, and having made this decision she seems much more at peace and able to focus on things that bring joy.

 

[hopeangel66]

at the level of vent, feeding tube etc. of course PALS are not yet vegetative. but down the road, as we all know, it does come. i don't watch too many ALS end-stage you tube videos because, being unable to move a muscle in your body, and using an eye or dot on your forehead computer is what i consider vegetative. just my opinion of course. having to wear something to assist coughing, breathing, not able to enjoy your favorite foods, is not really a "natural" way to go. to each his own. but more power to those strong enough to fight on.
it's just not for me.

 

[Ms. Pie]

I wish you all peace. xoxoxo

 

[hopeangel66]

vegetative bodily only, not of mind. your body becomes vegetative with a functional head attached. yiiiiiikes.

 

[Ms. Pie]

I don't consider that being vegetative at all but yes, scary to me too.

 

[skipper66]

My dad refuses to ever use a feeding tube, trach, or to use a vent. As heard as it's going to be for us we have to respect his wishes. It's in no way a form of suicide not to have these things. My dad says he want to have quality of life just not quantity in what time he has left. He's willing to try clinical trials and new medicines if something comes his way. But, if it doesn't he just wants to go peacefully and not prolong the inevitable. Each person has to make these extremely hard decisions for themselves. I pray for all of you that you make the best decisions for yourself and your loved ones. Kim

 

[hopeangel66]

i agree totally with your dad. he and i are definitely on the same page. yeyyyyyy! finally there's someone out there i can relate to.

 

[KenC]

Speaking only for myself I too agree with your dad. As you can see by all the different responses you've received, each of us have different strengths and fears. My wife at first refused the G-tube as it was a sign of becoming dependent on life support equipment. I also agree that at this point my wife IS in a vegetative state. It is now down to her breathing as to whether or not she embraces 'end of life' support. Her dad died of cancer and he too chose to decline all artificial support and to medicate until passing. It was probably harder on us as her dad showed no anxiety and passed peacefully in his sleep, but those last days were an eternity.