New Member and New Caregiver to Uncle, 55 in Hospice - Questions...

I have been reading the threads for a couple of weeks now, but just decided to finally write. My Uncle is 55 and has end stage liver disease. As recently as last week, we were talking about a transplant, but after receiving news that he would not be a candidate, we brought him to my mother's house and are providing care with the help of a really awesome hospice service.

He is currently only taking pain and comfort medication. Specifically, morphine sulfate, lorazepam, sprinonolactone, and saline for nose bleeds. No lactulose, no iron.

He hasn't eaten in four days, and had only 4 oz of water today. Breathing is shallow, bedridden, and sleeps around the clock. He seems to be developing a fever, and when he exhales, there is a gurgling sound.

I know that he doesn't have much time, but, like most other new posters, I am wondering how long someone can live without a functioning liver once curative treatment has stopped. I'm sitting next to the bed, just staring because I am so afraid that he will die without one of us sitting next to him.

For anyone out there who has been a caregiver - what happens next? How do I know if he is suffering? If he is sleeping, then hopefully he isn't in pain?

Thanks, Connie. It is amazing how quickly we have all learned so much about the liver and how important it is. I know there is no "cure" and that without the possibility of a new liver, all we can do is wait and make sure he is comfortable.

Transplant is not an option because his blood is so thin that it does not coagulate. The initial incision would kill him. His disease is caused by years of alcohol and drug abuse - although he has been clean and sober for more than 6 years.

Two years ago, when he was first diagnosed with cirrhosis, he appeared (to me anyway) pretty healthy. So I said, "Hey, well good thing you got clean" and went about my business. Never did I really believe that the end would come. Even over the last couple of weeks, each time we got the call that "this might be it" I was pretty certain something would change at the last minute, and he would be OK. He is only 55! He ought to have another 20 years ahead of him.

I am not angry at him for this disease that was self-inflicted. I know that he chose to abuse his body, but no one would ever choose this death.

It seems to me that this suffering is an awfully high price to pay.

Thanks to everyone who takes time to educate the newbies. It helps to know that there are others out there who have been down this path.

Thanks, Sandia. We continue to sit at his bedside and, despite knowing better, we pray for some kind of miracle. In the meantime, we have increased his oxygen level, and are doing our best to keep him comfortable. His fever has spiked to 108, and despite the acetaminophen suppositories, his temp is increasing.

I am reasonably sure that he is comfortable, the hospice folks assure us that at this stage, it is harder on us. Although no one knows if he has a minute, an hour, or a month left, the nurse did suggest that we call anyone who might want to say goodbye.

I have held his hand and told him that he doesn't have to fight, that we are all here and we love him, and want him to find peace.

I hope he hears us.

Hello Cid and welcome. I am so sorry that you are going through this with your uncle. It's very had to watch a loved one die .

It does sound like the end is near. My husband was in a coma from Friday to Monday 12am. He didn't eat or drink much for the week before. His gurgling about midday Sunday. I kept raising the hospital bed until he was almost sitting up. He passed away at midnight as soon as his daughter took his had. He waited for her. It was the hardest thing that I have ever been through in my life. But I am glad that he was home in his own house when he passed. I would not have wanted any other way.

Did hospice give you anything to keep his lips moist? And as Connie said......keep talking to him.......they say the hearing is the last to go. I firmly believe it too.......

Lot's of thoughts and prayers for you and your family.........