caring for my mom and need some understanding

I am hoping to hear from individuals who too have cared for someone in ESLD.

My mom has had liver disease my whole life. It was about 11 months ago (January) that she started to sleep all of the time. My dad had died the year before of pancreatic cancer. My mom lost her will to live at that point and never made it out of her intense grief and depression. We weren't sure what was going on with her. I took her to all of her specialists (she has a myriad of other serious health problems) in an effort to get answers. As the months of this moved on the confusion became increasingly worse. She was gone completely so many days. Her neurologists and internist didn't do anything.

Finally about August of this year, I took her to the gastrointerologist because her colitis was out of control. She also had terrible ascites, although we didn't know it at that point. He had her hospitalized and we finally started getting answers about what was causing everything that was going on with her. She was diagnosed with ESLD at this point.

Coming out of the hospital the first month or so the confusion (HE) was kept under control and we just tried to manage the ascites. about September though she stopped taking the lactulose consistently because it made her so sick when combined with her other health problems. So the confusion set in again.

Now we are in a cycle where she has 1-3 days of coherency and stops taking her meds because she hates them and then 3-7ish days of incoherency and sleeping. When she was lucid recently I asked her what she wanted us to do when she was like this. She hates it when we force lactulose on her but it is the only way to get her back. She told me not to ever force it on her but to just hospitalize her when she gets too severe.

I live 45 minutes away from her and am responsible for getting her to all of her procedures and doctors appointments. I have a 2 & 4 year old and am pregnant. Her brother lives with her but works full time so she is alone most of the day. She gets hurt a lot when she is incoherent. I am trying to get her approved for home health care but have not been able to get her to the appointments with the doctor to write the order. When she is incoherent I can't get her out of the house.

I am so lost as to what to do. I can't force her to take her meds and she told me not to. She doesn't monitor her water intake or diet at all. She stops eating entirely when she is out of it. I can't be there all of the time, even though I am there as many as four days a week with my little girls.

I feel as though she is dying bit by bit in front of me and I don't know what to do to keep her safe or to take care of her. She refuses adamantly the idea of assisted living the days where she is coherent.

Please help.

Nessak, welcome to the forum. We are a forum dedicated to helping patients and caregivers of those with all kinds of liver diseases.

I am so sorry to hear that your Mom has been diagnosed with ESLD and is having such a hard time.

My life partner, Mike, has had liver disease for over 40 years. He was an alcoholic with Hep C (infected late 1960s) and several other liver issues including liver cancer.

He was as you describe your Mom, very sick and very out of it. I cannot imagine your Mom on her own AT ALL. She need supervision and a lot of help.

You should know that if she presents at a hospital in HE coma they will administer that lactulose however they can...by enema if necessary. Wouldn't it be easier to just take it than go through that? Fortunately those completely out of it don't exactly remember such a horrific episode.

YOu have not shared with us her diagnosis nor any of the labs that would indicate how sick she is. We'd like to know if she is drinking alcohol (and if so, that has to stop), if she has Auto Immune Hepatitis, if she is HepC positive and what her Viral Load was at the last testing. Have they told you her MELD score? Is there any chance she would be eligible for transplant with her other medical issues? What do her liver function tests look like (AST, ALT).

David is exactly right, Xifaxan is an oral med that is often taken WITH lactulose to settle the HE. My partner was horrible during HE episodes and needed a lot of supervision. One of our posters, whose partner has passed, told us that her hubby did odd things while she was at work...took a horse for a walk on a busy road because the paddock was too bumpy, and more.

The good thing about HE is that if this passes (she gets a transplant) she won't recall how awful this has been for her, for you, for your kids and brother. Only we loved ones remember every single moment.

The lady with ther horses put hubby in a nursing home for a while because he was so out of it and she couldn't mind him every minute.

There are nursing services or a private person you could hire if you think she cannot be alone and the docs don't write an order for nursing care.

Maybe a family meeting is in order with you, your brother and any other sibs (yours and hers). Something has to be worked out to give you some respite, you can't do all this alone.

Let us know a bit more about what is going on.

I am sure she is Thankful on this day of thanksgiving that you are doing so much to help her.

Hugs,
Mama Lama