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How the hell do I know if Iām doing the right thing?!
I just posted a few days ago; and my mom is still in the hospital on palliative care. The plan was to test oral meds for a few days, and then start her discharge back to adult family home on hospice. The home wanted her to do 7 days of antibiotics first though, so upon trying to add those to her regime she started having harder time swallowing. In the mornings she can get a couple āgood swallowsā in and then it takes a good 10-30 seconds and a lot of āmom swallow, you need to swallow, all the way mom!ā And then she started coughing on one of the oral medicines she was taking and weāre no refusing any oral meds and want them all through her iv. The main decision Iām struggling with right now is food/waterā¦ my mom has been non verbal for two years now and between her stroke and dementia her communication was almost non existent besides eye contact and crying up until a couple months ago.. So right now when sheās awake weāve been just putting spoonfuls in front of her mouth and seeing if she opens and she usually does but Iām not convinced itās not just a reflex. She hasnāt had a BM in days and the last few times she has had a couple bites of pureed foods she has instantly gotten visibly uncomfortable and ends up suffering from a lot of gas.. Everything Iām reading says they will lose their appetite and to stop feeding them when they donāt want to eat, but itās not possible for me to know whether my mom wants to eat still or not?! And I feel guilty making that decision for her like either way, because if she wants to eat then Iām just starving her and if she doesnāt want to eat and I feed her then Iām just prolonging this horrible suffering that she never wanted to experience.. I also donāt want to be the one that feeds her something that makes her aspirate either.. so like wtf dude god.
I donāt know what to do and itās so fucked up and unfair that Iām the one having to make these decisions like wtf
These are impossibly hard situations we are put in with our loved ones to make these difficult decisions. However, it sounds like you and mom had some talks about her wishes be cause you said āIām just prolonging this horrible suffering that she never wanted to experience.ā
In making the decision to just keep her comfortable and stopping the feedings, youāre honoring her wishes, not making the decision for her. What would mom want? Would she want to be in the hospital and be undergoing this discomfort? Or would she want to be at home, on comfort meds only in the comfort of home?
If the food is making her uncomfortable, there is NOTHING wrong with stopping. At the end of life, we do not experience the symptoms and discomfort of hunger and thirst.
Itās hard to tell without knowing her full situation and I donāt know where you are located but if sheās on IV medications only and canāt get off the IV medications and switched to liquids, I would ask if sheās eligible for inpatient hospice. This would get a hospice team on board thatās skilled in end of life care and education to help you through this.
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