Since I had mom in the hospital for her feeding tube placement, there were nurses who implied I made the wrong decision "based on evidence" and it makes me wonder why people can be so monstrous to allow someone die of dehydration which can take weeks. I have a few thoughts to post about this.
My mom suffers end-stage Alzheimer's, has quit eating and drinking to the point of kidney failure, but I do not regret putting a feeding tube in her so she will not have to die of dehydration -- which can take as long as three weeks. Her kidneys completely recovered due to hydration. She is bed ridden, and I have to manage her bowels, clean her up in bed by myself..but I love my mum and I am still glad she is alive and with me. Despite what she wrote over ten years ago with advanced directives, she wanted help after she woke up from the coma (I asked her did she want to go to the hospital, and she nodded yes twice and even people with end-stage Alzheimer's DO have their moments of clarity). I use the hoyer lift to put her in her easy chair daily. I don't know it's up to you when enough is enough. I mean I could have done what hospice said and just let her die of dehydration, but I cannot stand to watch her die so slowly.
When I got mom home she said, even with her advanced state, "Thank you for taking care of me," and she said "I love you," after I told her how much I love her, which really made me cry. You talk about emotional..that really got me going.
Hospice will not approve a feeding tube...all I did was revoke it (only took seconds), Medicare paid for the hospitalization and tube placement, then reinstated her hospice. Hospice supplies me with a feeding pump, tube feeding, plenty of diapers, wipes, gloves and so on.
I wrote a blog about my experience and I have evidence-based articles to support my decision to have a feeding tube put in mom.
mymomfeedingtube.blogspot.com/2019/07/why-i-decided-to-get-feeding-tube-for.html
Well done to you, Cetude, on several points. I'm glad that you asked and listened to your mother, and I'm glad that you are coping well and working again on an even keel with hospice. When your mother's time does come, whenever that may be, may it be very gentle.
I wouldn't dream of contradicting you about your own feelings and your own experience; but at the same time I wouldn't either want people to be *unnecessarily* afraid of the process of death. Decisions to be made when a person with very advanced dementia stops being able to eat and drink are really hard. I do think it's important to remind people, though, that the body of a person who is actively dying does not produce the same sensations or emotions that we ordinarily feel.
Of course nobody ought to have put you under pressure about this choice, and I regret that you felt any kind of critical or disapproving vibes coming your way. Did you voice your concerns to anyone at the hospital? Were other members of your mother's team supportive?
NOW, I will tell you why the nurses suggested that. First of all, dehydration is not a bad death at all after several days without fluid, and withdrawing fluid will make the end more like 3 to 7 days than the three weeks with hydration (fluid only) given. So that giving fluid PROLONGS the end. There is a brief period of picking at things and restlessness, that can be medicated with a morphine drip. It is END OF LIFE CARE at a time when there is hospice and it is recognized that life is about to end, will end, and the end is expected and accepted. So tube feedings of fluids give only fluid, not nourishment, making the body shut down surely and certainly but more SLOWLY and PAINFULLY, often causing diarrhea and painful pressure sores that quickly go down to the bone. We nurses learn very quickly that putting the end off make the end only more prolonged, and it is our overall belief in no fluids at the end, and in almost all our advanced directives. I am certain if you had asked her why she would have told you. Hospice is no longer what it once was, dedicated and near constant care as opposed to money making machine now like the rest of our society, but they are still better than most at answering the questions of loved one, and still have the more dedicated nurses overall I hope.
I wish you and your Mom the best. There is clearly tremendous love and there is dedication on your part, and your Mom knows that. You are fulfilling HER WISHES and that is what is paramount now. Do continue to do it HER WAY. I wish you both good luck and hope you will update us.