Constant Back & Fourth
My mom has end-stage alcoholic cirrhosis/liver failure and was placed on hospice on 4/22 after a ~3 week hospitalization where doctors told us there were no curative options left. She had already been barely eating/drinking for weeks before hospice.
Over the last 3+ weeks on hospice she has had:
- very minimal intake (sometimes only yogurt and sips of water)
- major weight loss/muscle wasting (she hasn’t walked since before the hospital so maybe 6ish weeks)
- periods of severe confusion and encephalopathy
- fluctuating alertness/lucidity
- escalating pain medication needs
- inability to always drink through a straw
- restlessness/agitation/startling easily
- sleeping most of the time on many days
- intermittent weakness where she couldn’t really focus her eyes well
A few days ago she had vomiting followed by significant bleeding from her mouth. She has known esophageal varices from portal hypertension/liver disease, and hospice thinks that may be what happened. After that she developed:
- fever
- elevated respiratory rate
- lower BP
- more weakness
At that point hospice told us they thought she may only have 24–48 hours based on appearance/vitals/experience.
But since then she has had multiple “rally” days where she suddenly seems much more alert and coherent. Her vitals stabilized again (BP around 108/68, temp normal), she’s had full coherent conversations, knew exactly who everyone was, asked for yogurt/water, wanted out of bed, and even told me she thinks she’s going to get better and walk out of hospice. She told me she was not ready to die yet.
This emotional back-and-forth is really confusing for me because one day she looks actively dying and the next day she seems shockingly mentally present.
I know nobody can predict exact timing, but for people experienced with hospice/liver failure:
- Is this type of rallying/common fluctuation typical in end-stage cirrhosis?
- Can people remain in this state for weeks?
-how can she keep going with barely any food or water for 6 plus weeks now ?
- Does variceal bleeding usually indicate a more active dying phase even if they stabilize afterward?
- How do you emotionally handle the constant “yoyo” between decline and lucidity?
I’m struggling to understand what stage we’re actually in. 2 days ago I was mourning her going in the next 24 now she’s chipper and happy.