Final stages without feeding tube

[ZCare]

Hello, this is a long time coming in joining a forum-been dealing with ALS for 5+ years. First as caregiver once a week and now a visitor to the nursing home.

My aunt was diagnosed in late 2009 and is in her final stages of the disease. We have noticed a sharp decline in her breathing lately and hospice (who have been working with her for awhile) have indicated that the end is near.

I just found out that my aunt has opted to stop using the feeding tube, which we fully support as it is her decision to make. She will just be eating things orally, which is limited to pudding or yogurt. Needless to say, she will not be getting a lot of calories this way. She will also be ingesting water.

So my question-has anyone else experienced this stage? How long did your loved one last without (barely) any nutrients? I know this is not an exact science-she has already lived beyond the 5 year mark so it's not like she really adheres to standard timelines, but I'm just curious.

As you can imagine I have many emotions attached to this, but my biggest concern is her comfort. She is suffering and yet so loving with us all-I want her to be at peace...

 

[Nikki J]

I am sorry. A difficult time I know. If she is taking in something orally it is virtually impossible to guess. If she is currently well nourished it will probably be longer. My mother opted out of a feeding tube altogether. She took in less and less and became more and more emaciated. She lasted a long time on small amounts.
If your aunt is taking just a teaspoon a day it will be different than if she manages a few hundred calories with some liquid consistency. I think my mother was several months on a few hundred calories. On the other hand if she has decided she is done it could be quick. Wish I had a crystal ball for you!

 

[lgelb]

I would ask her directly how she wants things to go -- whether she wants to be done quickly, has things she wants to do, and help her wishes happen, just as you have been. She may give you time cues, like, "I'm not going to be here for Thanksgiving."

In truth, as Nikki said, it is largely up to her. It's not a linear calories equation. You and the rest of the family can support the best plan she has for herself. Thank you for helping her these years.