beckyndane

I am so sorry for your loss

It sounds like your mom is further in her disease than my dad...He had nutritional blindness,not because of liver failure but because he wasn't eating properly.

Yesterday,driving down the road I heard a song on the radio that made me remember a lot. It hit me hard and the next thing I knew I was balling my eyes out. I decided today that I would start journaling when this happens. Today I wrote a page worth of memories. I wrote it like a letter to my dad. I just wanted to share.

Hi, I am sorry you are going through this...I have not had to deal with all the same things as you but some. My dad has end stage liver failure because of hepatitis C. He wasn't really an alcoholic until the last 5 years which sped up the cirrhosis. The encephalopathy and confusion as well as nutritional blindness is why we brought him to the doctors last year. Dad and I were the best of pals and he didn't want anything to do with me,he made up lies about me so my brother came and moved him from my house and eventually sold his own house to move in my dad. After living with him, my brother soon realized what was going on with dad and we have since made up and are trying to help him together. My point of this was to share that I can empathize with you because I am seeing some of the same things. For me, just labeling "anticipatory grief" has helped. It feels like it is normal and I don't feel so alone. I am not sure where to go from here either. I agree with the other people about talking to the doctor or even the chaplain. Chances are they will have heard similar stories and know how to help. I know it was real difficult to try and talk to my dad when he was full of ammonia. Lactulose( which goes in and binds the toxins and allows them to be excreted) has been a Godsend! He is also taking Xifaxan,which is an antibiotic to help kill the bacteria that builds up because the liver can't process all the toxins. I pray that your mom will have some clarity and realize you want to spend time with her and allow you to do that.

Thank you, at this time my dad is still doing most of his own care. I don't think hospice is right, just yet. I will look into grief counseling.

Hi, I am unsure how to manage my way around this site.Please forgive me if I am doing it wrong. A year ago my dad was diagnosed with end-stage liver failure,type 1 diabetes, hepatitis c,and liver cancer. I have a brother and a sister too. My dad hasn't been to a doctor in a real long time and was diagnosed all at once. It was very hard for him to deal with it,but, he (we) did. His hepatitis is gone, he is managing his diabetes and we have made a few trips to the transplant center and actually found out that one of us could donate 2/3 of our liver to him so he won't have to wait on any list. Recently though dad has decided he doesn't want to burden any of us with after transplant care and without any guarantees about quality of life, he has decided, with a lot of thought,that he no longer wants to go through with the transplant. I am so sad. All the time. My dad and I have always been the best of pals. My mom left us when we were real little so it has always been just us. When I was 16 I became "the woman of the house". I helped raise my brother and sister,did all the chores and cooking,etc. I am now the mother of 5 and have been married for 14 years. I have had weeks now that I will set out to accomplish a lot and decide after everyone leaves for work and school that I just want to sleep. I am not sure where to go from here.