Endless Cycle
My mother (age 67) has a long list of ailments including decompensated cirrhosis, barely controlled Type 2 diabetes, aortic stenosis, neuropathy, etc, etc, etc. She stopped drinking back in 2022 when she had her first episode of Hepatic Encephalopathy. Since then she’s had multiple hospitalizations per year- ranging from a few days to over a month. She’s been on full life support 3 times and dialysis a few times. Hospitalizations are mostly due to altered mental state stemming from HE. Each hospitalization results in less of a complete recovery. Just this year she’s been hospitalized 3x already- all 3 times for a UTI that resulted in HE and/or sepsis. She cannot get around on her own and requires almost full care. She fell 3x in 2 weeks hitting her head once (resulting in black
Eyes and a gash on her forehead), once breaking her fall with her hand (resulting in swelling and bruising) and once hitting her back on the coffee table.
She is on lactulose and Xifaxin for the HE and piles of other meds for her other issues.
My father (age 68) is the one providing her care- he cooks, cleans and helps her dress when she cant do it herself. Serves her meals, does the laundry, etc. He also is a business owner that he is still working full time at. We (my father, my sister and I) are all at the end of our ropes. Especially my father because he has no life outside of work and caring for my mother. Most of their friends were alienated during her drinking days and the others are all living their own lives. Not that he’d have time to socialize anyway.
She was working to get on the list for a transplant- but she wouldn’t quit smoking, wouldn’t admit to having a problem with alcohol and eventually gave up.
She spends most days sleeping. She has a lot of pain in her legs and nothing seems to help. She only gets up to use the bathroom (which is very difficult for her and she often skips the diuretics and lactulose so she won’t have to get up
As much) and to go to bed. She barely showers and I’m sure is not cleaning herself as well as she should. Every time she is hospitalized the doctors recommend her going to a rehab and every time my father refuses. She is often confused- but is still aware enough most of the time to be mean and nasty when things don’t go her way.
She won’t do Physical therapy and my father lets her deny it because it’s easier than arguing. He is wealthy and can afford part or full time at home care but refuses to get it because “she doesn’t want it and I don’t want a stranger in my house when I’m trying to relax.” There’s only so much my sister and I can do to help. We both work and have our own families. It’s at the point where my father is fully convinced she’s going to outlive him (even though he is pretty much perfectly healthy other than high blood pressure). He is depressed and refuses to get help for himself. Every other day he tells my sister and I that he can’t do it any more and is going to jump off a bridge. He says hates his life.
Mom expects him to be there at the hospital 100% of the time. The only excuse she doesn’t get mad at is taking care of the dog. Her ammonia level went back up today and the nurses said she’s been refusing the lactulose 🤬
All that to say- how much longer can this go on? She has a portosystemic shunt, asterixis, esophageal varices, repeated HE episodes but only mild ascites. She is currently in the hospital and her blood work is almost. Her MELD is only a 13. I go back and forth between feeling badly for both of my parents and being angry that they keep doing the same things and expecting different results.
Doctors say they can’t give a life expectency- so hospice is not an option.
Does anyone have experience with palliative care for cirrhosis and what that entails?
Sorry for the long story - we are really struggling