Hi everyone - i'm new here, and found this site while looking up info on my dad's ESLD over the pat months. I'm really overwhelmed right now. My dad and i have never had a good or close relationship in all my 36 yrs. He is dying of end stage liver disease and now wants me to be his main caretaker. I have been going to help him daily (put him in hospital a week ago because he was disorriented and couldn't move to answer door, or phone, or go to bathroom. Brought him home 2 days ago and saw a hepatoligist today. Dad has serious ascites, jaundice, confusion and slight delirum, his kidneys arent quite right, umbilical hernia, and now bleeding from the anus. He refuses to let me get him in home nursing or put him in a care home. I can only be there so many hours a day (I live 30 mins. away and have children and am myself disabled). We are waiting on a call to get him evaluated for liver transplant at UPMC. I feel like i can't do everything he needs to take care of him (he shouldn't be alone - but does live alone) and manage my own illness and life.
They won't do paracentisis because his blood is so thin (nomatter how many transfusions) so dr. today increased his lasix to 80mg and aldactone to 200mg and put him on antibiotic for infection of bladder or ascites (not sure). We cant get hospice because he wants to try for the transplant - even though it seems like a longshot, even to get on the list. He is severe alchoholic but has not had a drink in 6 months (as far as i can believe). I just wish we could get a more definitive answer about him. They say his only shot is a transplant, yet they wont drain his fluid or take aggressive measures to make him more comfortable in the mean time. There is so much more i could probably write, but this is the gist of it for now, i guess. If anyone can relate or has an idea of our future days or prognosis, i would so appreciate it. It's all just so overwhelming and especially considering he has never had any relationship to me till now. I was informed when i asked him about living will and power of attorney that I am completely out and my aunt (godmother) is the only one in his will and is his power of attorney. She and I are in total agreement about everything so that isnt an issue. I guess it just hurts and stings that he expects / wants/ needs ME to do everything for him now and yet I am basically a nothing to him as far as the will. I don't want his money - it just hurts alot.