Cirrhosis Support Group
Cirrhosis is a consequence of chronic liver disease, most commonly caused by alcoholism and hepatitis C. Ascites is the most common complication of cirrhosis and is associated with a poor quality of life, increased risk of infections, and a poor long term outcome. Liver damage from cirrhosis cannot be reversed, but treatment can stop or delay further progression and...
My mother has been living with Cirrhosis for almost a year and a half. She went to the hospital towards the end of August because of her stomach hurting. I figured it was the varices bleeding into her stomach again.
Well I got a call from my brother while my kids and hubby were out at the store waiting to get groceries and hubby to get paid. My brother told me that the Doctor told my mom that she has a month max to live and that there is nothing else they can do for her. ( I was pissed that he called me while I was at the grocery store and Dad was pissed b/c he wanted to tell us in person)
My mom has chose to live out the last of her days at home with family instead of at the hospital or nursing home
Needless to say I am very upset about this news.(she has made it about 3 weeks now)
She refuses to go to dialysis for her ESRD she just lays in bed all day sleeping. She may sit up and eat or drink a little, she has to take high doses of lactolose I mean like 5 or 6 doses before she will go to the bathroom. she urinates very little but she eats like 7 or 8 glasses of crushed ice.
I'm scared I am going to wake up and find her dead. I am scared to sit up with her at night and use the meds in her care kit, because I feel lost like I don't know if I am giving her the right amounts
Anyone else been through this?
Well I got a call from my brother while my kids and hubby were out at the store waiting to get groceries and hubby to get paid. My brother told me that the Doctor told my mom that she has a month max to live and that there is nothing else they can do for her. ( I was pissed that he called me while I was at the grocery store and Dad was pissed b/c he wanted to tell us in person)
My mom has chose to live out the last of her days at home with family instead of at the hospital or nursing home
Needless to say I am very upset about this news.(she has made it about 3 weeks now)
She refuses to go to dialysis for her ESRD she just lays in bed all day sleeping. She may sit up and eat or drink a little, she has to take high doses of lactolose I mean like 5 or 6 doses before she will go to the bathroom. she urinates very little but she eats like 7 or 8 glasses of crushed ice.
I'm scared I am going to wake up and find her dead. I am scared to sit up with her at night and use the meds in her care kit, because I feel lost like I don't know if I am giving her the right amounts
Anyone else been through this?
If your mom is indeed in her last days, I'm sure their is a hospice team who oversees her care. Please follow their advice and ask her hospice nurse questions when you need to. You can call them anytime day or night. I'm surprised that a doctor is still keeping her on lactolose at this point, but he or she knows best. Mainly, if your mom is comfortable and sleeping most of the time, that is good. She should be given food and water only if and when she wants it. Her body will finally start to shut down, and she won't want or need food, and she won't be hungry.
I wish your family could get a couple of care givers who could rotate shifts to sit with her so you wouldn't have to be there all the time. I'll be praying for the family. Marilyn
So it is mainly up to my Dad, Husband and Myself to look after her.
She has seemed to perk up the past week. She is sitting up in her hospital bed and a few times this week she has eaten substantial food like Steak, Chicken and Dumplins, Pizza, and some Meatloaf.
Before she was just eating crushed ice, rice pudding, and Greek yogurt.
She was very difficult last night. We have all been up for about 4 days straight b/c of my kids being sick and not wanting to go to bed and Mom was wanting to get in the recliner so we moved her into it and she sat there for maybe 2 or 2.5 hours.
She told Dad she wanted to get back in the bed so we put her in the bed. I told her dinner was ready I had already sat the table and fixed plates and she starts throwing a fit about being in the chair again.
She doesn't understand that she can't get up and do things on here own any more she can't walk we have to put her on the portable toilet, we have to put her in the recliner, and we have to put her back in the bed and she just gets soo mad at us thinking we don't want to help her, but we do.
As I recall, my dad had a time when he rallied a bit and began eating and asking to sit up for a while. This was about a week before he went into a coma and never regained consciousness. He was in a hospice care center. He did have excellent health insurance (which my mom nor grandma didn't) so it wasn't a problem getting him into the facility. They were wonderful about letting me stay around the clock with him and even brought me a recliner chair to sleep there. He was so afraid of dying. I managed to get my minister to come visit and after he professed God as Lord, he seemed more calm and less afraid. That was a blessing.
I had a renewal of my own faith at that time. Had it not been for that, I don't know how I would have made it through those last grueling weeks. Then, after he passed, the task of arranging the funeral, calling out of town relatives and then putting them up during their visit for his funeral as well as settling insurance and paying off his last final expenses as well and then selling his home and dividing the assets according to his wishes..........all fell to me as well.
As Marilyn has suggested, it would be a blessing to you if you can arrange to let some of the care giving tasks fall to the hospice folks. They are trained and seem to have the compassion that we so desperately need at a time like that. Also, when you have to get away for a little while, don't allow yourself to feel guilty. It is what will keep you going so that you CAN do all the things you will be asked to do.
It takes a pretty special person to be able to do the job before you. I didn't think so at the time but now, looking back, I see how, with God's help, I not only helped my dad (and my mom and grandma although I had more help when they passed) but also, I helped myself to be able to live without guilt once all was done realizing I did all I could have humanly done. I like to think that somewhere, now, they are all together waiting for the rest of us to follow and somehow, I know that when my time comes, their strength that they each instilled in me will be a saving grace for me.
I do wish you well and my prayers are with you. Nobody can say anything to make your task easier.........each situation is different.......but do know you are thought of and prayed for.........please stay in touch.........Hugs and prayers......CarolLentz
The restlessness is getting worse with her. I will sit here on the computer while she lays in bed watching tv. I start to see her inching towards the side of the bed and I'll holler for my Dad to come help me and she yells at me to just shut up.
She isnt understanding that I am trying to keep her from hurting herself and she gets upset..
Good news is that one of the hospice nurses came by to visit today to check on her and said as long as the swelling is staying in her legs its not building up around her organs.
The nurse did tell me that if she has refused dialysis it shouldn't take long for the fluids to build back up around her organs that she will eventually pass.
Her bp was normal as well as Oxygen was at 98% her lungs were clear.
God is great and is always there for me I know I'm gonna fall hard when she finally is called home, but I will be happy to know she isn't suffering in this life anymore.