End Stage Liver Disease - Care Options?
My father is 57 and has end stage liver disease (from hep c and alcohol). He moved to AZ three years ago to be closer to me. He had been in and out of the hospital for vomiting blood, esophageal veracies, etc. Since he's been here, he stopped drinking after a doctor told him he would be dead in less than a year. The disease has progressed and he now has ascites that needs to be drained every 3 weeks or so (13 liters). He has also been hospitalized every two weeks for the last four months for hepatic encephalopathy. He takes lactulose three times per day to help rid his body of ammonia, however, it doesn't seem like it is even helping anymore. This last hospital visit, his ammonia level was 340! Up until a week ago, he lived alone, however his "baseline" is now somewhat always confused. He is unable to do simple things like open a water bottle, tie his shoes... He has lost a lot of weight and is cold all the time... He sleeps often. He is currently staying with me and I am struggling because I also have a 2 month old. I cannot take her into the hospital and he becomes aggressive when he gets really confused. His last episode involved him pounding on my bedroom door naked at 2 in the morning and going to the bathroom on the floor in front of it. I am an only child and my husband helps me to take care of him but we have no other family here. I go back to work soon (from maternity leave) and am not sure how I will ever take care of him - I would need a care giver for at least 40 hours a week. I am looking into assisted living arrangements but they are expensive and I worry that they won't take care of him as much as I do. I just have no idea what I should do or how long he even has to live. He is currently seeing a transplant team but they are not sure he will qualify bc of other issues (heart disease, pulmonary artery disease). Anyways- any experience with this or advice would be greatly appreciated.