I apologize for the length of this post. The sad part is that I have still left some stuff out I am sure.
I personally do not have this horrible disease, but my very young 52 year old mother (and last parent) just died from it on January 1st. She was a fun, really fantastic woman that never had a fair shot at life. I am one of her 8 children and am 34. My father died 20 years ago and after that my mom became a alcoholic. I know that she has many years after rehab that she didn't drink. In the past year though she has been on a binge, skipping family holidays, asking me to not come over because she was "sick". My young 30 year old alcoholic sister moved back home and they drank together. I don't know if I will ever forgive her. I did not live in Missouri where she lived and all of my other siblings live, so I missed a lot of what was going on. However, I should have known the signs. I never once thought to research the signs for liver disease.
This summer she moved out of the house she owned with my dad for 20+ years, it tooks it toll on her bigtime. After the move she has big bruises all over her body, she kept saying that it was from all the unpacking she was doing. I foolishly believed her. The last time I saw her happy and healthy was in August. We all went to Kentucky to see my brother graduate from basic. Those bruises were not there anymore and I thought she was fine, but boy was I wrong. In November my brother came back from Virginia where he is training and said that if anything happened to mom to let the red cross know so he could come home. He is my younger brother, but he must have known. The next week she missed Thanksgiving because she was sick again and I went and saw her the next day. She had her last drink that Thanksgiving and on that Friday was swollen with ascites, barely able to walk, and had been in bed all day. I told her that I wasn't coming over again with my kids until she could get it together.
Less than a week later she is in the ER next to death. My youngest sister went to see her because my older sister told her she heard our mom was sick. What my younger sister found, she will never forget. My mother could not get out of bed, she had sores all over her lips, & she looked like she was in her 70's not 50's. She got up to take a shower and after she was done turned mustard yellow. The jaundice had set it. By the time she was seen by the doctor we found out her blood pressure was low, her kidney's were not working, and she was in liver failure. She got moved up to ICU where she was pumped with all kinds of meds. She hated the lactulose. 5 days go by and she is still alive after the told her that she would never make it out of the ICU. She was directed to Barnes Jewish (4 hours away) for testing to see if she would even qualify for a transplant. 3 days later they told her that she would after 6 months of being sober. They sent her home with no home health, and no hospice because they didn't think she was terminal. Everything went downhill from there. By now 2 weeks have gone by and we are here only caregivers. I went to the doctors with her and they pulled me and my sister aside and said she wasn't going to make it. All this work and for nothing? We took her home and never told her what the doctor said, even though I suspected she knew. Another week goes by and she seems stable, but by the next week she looked like she was dying. Slept all the time, seemed very confused, and cold. On that Friday when I saw her, I told her boyfriend of 17 years that my mother was dying. He called the ambulance and she went to a hospital 45 minutes away. The bottom number on her blood pressure was down to 54. They couldn't help there and lifeflighted her to Barnes Jewish where she ended up dying. I feel bad that we took away her chance to die at home, but she would have been in a pain. The doctors where she lived where worthless. We had to fight to get her home health nurses. By the end she didn't even look like herself anymore. I think what my sister and brother saw that night she died will haunt them forever. We were lucky enough to have one good last Christmas together and she was gone on the first day of the new year. This crushed us all, my oldest who is 10 is just devasted. She had 6 grandkids that she won't ever get to see grow up.
Sorry this is so long, but I hope that this might help someone else that is going through this. I am going to list all her symptoms below. In the ER and till the end she was jaundice all over her body and the whites of her eyes, had bad ascites, (the swelling went down in her feet and legs), she had bad itching, encephalopathy, bruises, so much weight loss at the end, (I suspect that it was muscle wasting) no appetite, and the hand flapping at the end. Officially she died from liver failure, they told us that she did not has cirrhosis of the liver. I still don't understand how she didn't. We would have done anything to keep her alive, even if her quality of life was affected. She was our everything, the rock of our family. I just want the ones to know...that have the chance to make things right, to do it. Losing a loved one to this disease is the hardest thing we have ever been through.
Caregivers, please try not to make your loved one feel like a burden as you take care of them, try not to think about how this has alter your life, because most likely it's harder on the patient. (even if they did this to themself) You never know when the last breath is going to happen, so make sure that they know you love them.
Thanks for reading this.
S
Post Edited (One_of_8) : 1/5/2011 10:02:25 AM (GMT-7)