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Dad is in stage 4 cirrhosis. Don’t know what to expect or do.
My dad is in stage 4 cirrhosis. He has always been a drinker. He has always enjoyed the social side of alcohol and always stated that if he stopped drinking, his life would be over. Up until 5 years ago, he was able to keep himself fairly under control. In 2014, I lost my mom (they had been divorced for years), my sister, and my paternal grandpa in the span of 4 months. All of these losses took quite a toll on my dad. I didn’t realize he started drinking so heavy until it was to late. He started having serious issues (mental confusion, seizures, heart problems) in 2015/2016. I begged him to stop drinking, still not knowing that many of his problems were related to cirrhosis. I just knew the drinking wasn’t helping. He continued to go in and out of the hospital for various reasons.
In mid February 2018, he fell after getting up in the morning and was admitted to the hospital. All he could remember was that he got up, didn’t feel right, took two steps and fell. Because he lives alone, we don’t know how long he was down but he was eventually able to crawl to his couch and get his cell phone to call for help. In the hospital, they started talking about liver issues. They had run a large amount of tests to see if they could determine why he fell and found elevated liver enzymes as well as other signs of liver failure. He was admitted to a physical rehab facility and while there, we started to see alarming signs. Forgetfulness, confusion, his abdomen was distended, spots that look like bruises on his arms. I asked the doctors there for them to book an appointment with GI.
The GI specialist said that he was in end stage liver failure due to alcoholic cirrhosis. She also said that due to his other physical ailments, he wasn’t going to be a candidate for transplant. She said he needed caregivers and there wasn’t really much else they could do but manage symptoms. She scheduled a parasyntesis and they drained 11 liters. Less than two weeks later, he was swollen again.
While he was in the rehab place, my family and I cleaned his house. It was like an episode of hoarders. We threw away empty gallon bottles of gin, countless bags of cans/bottles of beer and wine.
He was in the rehab facility for 4 months. He regained some strength but still wasn’t doing well. When he was discharged, we brought him home with care. We made the decision to put him with hospice and hospice agreed that his medical condition made it probable that he would die within six months. My dad hates doctors and hospitals so I determined it to be the best choice.
Now he is home with hospice care and caregivers. He can still get around on his own but is weak. He sleeps a lot, gets extremely agitated, is very confused (short term memory is nothing, long term memory seems spotty), the spots are appearing more and more. He had a pleurex drain put in and we are draining at least a liter a day. If we wait to long, fluid leaks from the tube.
We had to start giving him Ativan due to the extreme agitation. I have taken over his finances and manage his care and household.
I know there is no crystal ball that says how much time he has left. My research produced so many different outcomes. I know he is dying and I don’t think he has more than a year left. I am trying to make the best decisions for him but am concerned about his money running out. He doesn’t qualify for state help due to his assets. If he doesn’t have very long, I would rather keep him at home where he is happier. He would be miserable in a nursing facility. With home care, he has enough money to last about 8 months. In a nursing facility, he has enough to last about 1 1/2 years. I am looking for perspective on his time left. With my sister gone, it is just me and my husband. We have help from my aunt and my dads friends but, ultimately, I have to make the decisions and I want to give him the best possible quality of life
In mid February 2018, he fell after getting up in the morning and was admitted to the hospital. All he could remember was that he got up, didn’t feel right, took two steps and fell. Because he lives alone, we don’t know how long he was down but he was eventually able to crawl to his couch and get his cell phone to call for help. In the hospital, they started talking about liver issues. They had run a large amount of tests to see if they could determine why he fell and found elevated liver enzymes as well as other signs of liver failure. He was admitted to a physical rehab facility and while there, we started to see alarming signs. Forgetfulness, confusion, his abdomen was distended, spots that look like bruises on his arms. I asked the doctors there for them to book an appointment with GI.
The GI specialist said that he was in end stage liver failure due to alcoholic cirrhosis. She also said that due to his other physical ailments, he wasn’t going to be a candidate for transplant. She said he needed caregivers and there wasn’t really much else they could do but manage symptoms. She scheduled a parasyntesis and they drained 11 liters. Less than two weeks later, he was swollen again.
While he was in the rehab place, my family and I cleaned his house. It was like an episode of hoarders. We threw away empty gallon bottles of gin, countless bags of cans/bottles of beer and wine.
He was in the rehab facility for 4 months. He regained some strength but still wasn’t doing well. When he was discharged, we brought him home with care. We made the decision to put him with hospice and hospice agreed that his medical condition made it probable that he would die within six months. My dad hates doctors and hospitals so I determined it to be the best choice.
Now he is home with hospice care and caregivers. He can still get around on his own but is weak. He sleeps a lot, gets extremely agitated, is very confused (short term memory is nothing, long term memory seems spotty), the spots are appearing more and more. He had a pleurex drain put in and we are draining at least a liter a day. If we wait to long, fluid leaks from the tube.
We had to start giving him Ativan due to the extreme agitation. I have taken over his finances and manage his care and household.
I know there is no crystal ball that says how much time he has left. My research produced so many different outcomes. I know he is dying and I don’t think he has more than a year left. I am trying to make the best decisions for him but am concerned about his money running out. He doesn’t qualify for state help due to his assets. If he doesn’t have very long, I would rather keep him at home where he is happier. He would be miserable in a nursing facility. With home care, he has enough money to last about 8 months. In a nursing facility, he has enough to last about 1 1/2 years. I am looking for perspective on his time left. With my sister gone, it is just me and my husband. We have help from my aunt and my dads friends but, ultimately, I have to make the decisions and I want to give him the best possible quality of life
The sleeping, confusion and agitation symptoms are a symptom of End Stage Liver Disease. The specific condition is called hepatic encepalopathy (HE). This is normally treated with a medicine called lactulose. It is a special laxative that can help to remove excess ammonia from his blood stream. The ammonia is causing the symptoms of HE. He should be taking a titrated dose of enough to have about 3 soft bowel movements daily. Lactulose is a very sweet tasting medicine and may be mixed in with some beverages to cut down on the over sweetness.
Talk to his doctor about this symptom HE.
As far as how long he has as you have said it is very hard to know. If he develops a life threatening complication like bleeding esophageal varicies or spontaneous bacterial peritonitis (SBP) he could pass very quickly but if not he could exist in this very sick condition for quite a while.
The best person would be his hepatologist about his prognosis but really for even the most informed expert it would only be a guess.
So sorry to read this about your dad my best wishes to you and your family.
Talk to his doctor about this symptom HE.
As far as how long he has as you have said it is very hard to know. If he develops a life threatening complication like bleeding esophageal varicies or spontaneous bacterial peritonitis (SBP) he could pass very quickly but if not he could exist in this very sick condition for quite a while.
The best person would be his hepatologist about his prognosis but really for even the most informed expert it would only be a guess.
So sorry to read this about your dad my best wishes to you and your family.
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