Hi Little Sister,
You are a wonderful sister indeed. My heart is breaking for you. My husband Gene is also receiving hospice services for hils end stage liver disease but is realatively stable for the moment.
It's so easy to doubt our choices and second guess how things were handled. It sounds like your sister's encephalopathy from the cirrhosis complications was advancing quickly; you could not simply leave your sister sitting in a chair to decline alone.
The liver cancer was probably diagnosed by CT scans or biopsy. Sometimes when one's liver is so damaged even procedures to diagnosis and attempts to treat accelerate the encephalopathy. That certainly was my husband's case and he could easily have died following the paracenthisis three and a half years ago. We were new to liver failure and relied on the medical team who didn't always make the best calls.
Hospice will keep your sister comfortable. They should also be there for family to get you through these most difficult times. It is natural for the body to stop eating and taking in fluids when preparing for death. Your sister's progressive encephalopathy is also likely causing her to be comatose or semi comatose, Doing IV fluids is usually contraindicated this late in the process; especially with ascites. But it is painful to watch helplessly from the sidelines.
You and your big sister are in my thoughts and prayers,
I know what your going through is not easy,,you did nothing wrong by calling 911,,your sister needed attention and also needed the medical confirmation so that she can receive hospice services,,,just hold her hand,talk softly to her,play gentle music for her,,and keep letting her know she is not alone,,,,if only everyone was so lucky to have a loving sister like you to help them at the end of this horrible disease,,,you will be in my prayers,,,
Mara2, Welcome to HW. Sorry to hear about your sister. Usually just keeping the mouth moist with a swab helps. I have been told numerous times, while they lay peacefully they have no thirst or hunger, thats what I choose to believe. IV's would probaly not be helpful at this time, it could make their breathing more difficult. I think just being there for her is the most precious gift you can give her and yourself. Just know you did the right things by calling 911, she needed help. The declines can happen so fast, and one never knows when it will happen! Some do get better for a little while others do not, but you have been a very caring and loving sister. She is blessed to have you!
Marg and all,
Thank you and Marg I am so sorry for your loss. This board has helped so much.
Here what has been going on now... there have been changes and I'm totally confused and I'll admit part of me is angry. Here we have been preparing for her death...all the hospital staff had no hope recovery...so we took her home virtually to die. Like I said before she hadnt eaten, drinken or resonded to her name for six days. SHe also didn't move and would just stare blankly with a glazed look.The hospice nurses said she was "inbetween" life and death. That she was prepareing for death...so SO HAVE WE.
Now 3 days ago she "woke up" I'm telling you thats exactly like it was. SHe just responded to her name....opened her eyes. Just like that! SHe said she was thirsty and said "Yes" to the quesion if she wanted something for pain. SHe makes eye contact for short amount of time-is trying to change positions in bed on her own.
What is going on???? I just spoke to my mom and shes feeding her a smashed banana!! Hospice said they will have to re-evaluate her because they may have to stop the 24 hour care. (Just go down to 3 or 4 days a week with an aid) Initally we thought this had to be an energy spurt that we've been told about before someone passes.. but its been 3 days now. I dont think that "spurt" lasts this long. Is she getting better...? I know I should be happy but I'm feeling sick to my stomach. I tell you all the signs were text book- so far exactly what the little blue hospice book said would happen has... except this.
trish, where did you come up with that saying i like that? i have been reading alot about the real people who deal with liver disease every day and the caregivers, its so very heart breaking to read how they dont care about them selfs and still go on drinking it realy flips me out, and everybody else is going nuts trying to keep things together.
i know you love them so very much but sometimes how do you do it?
they dont even know what caused my fathers cirrohsis its down as unknow origin, because he hasnt drank for 25yrs at least, no hepC, and he was never a drinker, he wasnt on hardly any meds before we found about this. the hard part for me is i dont know how he got this other than working in a chemical factory for 30yrs. thats all we can put together. i love this forum its keeping me sane right now, because i know im not alone in this. please take care and be safe, have hope
Mara2, My husband has looked like he was at "Heavens doors" many times and he bounced back. He has been in comas and stupors, I have even though well this is going to be it. Then his labs get better and he is more lucid, hungry and thirsty. It can really be just amazing and confusing, how they can make such a turn around. I do hope your sister continues to do better, it is not impossible for her to stabilize, for awhile, maybe she could be considered for a transplant. It would be worth checking into. Prayers continue for you and your family.
I am so sorry Mara2, it is very hard to lose someone you love. My prayers to you and your family.
so sorry about your sister, she knew you were all there for her , it can be pain full but you know she is not in pain anymore. i know how you feel. now you have to take care of yourself, my prayers are with you and your family.
Thank you all for your kindness.
Keeping this in perspective helps me when things get emotionally overwhelming. By perspective I mean...without sounding cold hearted.... my sister made some bad choices and did not take the opportunities to get help offered her over her life. The true tragedies in life are the familys that get killed by drunk drivers....the innocent children suffering from leukemia ...the child sitting on his front porch that gets shot by a gang members bullet...the person dying of liver disease that has tried to take care of themselves...etc. To think there are also people,like my sister, who live thier lives in a manner that will ultimately end their lives....it is very sad and painful to us left behind....but compaired to what others go through....it is not a tragedy...its just very, very sad. In no way do I mean to lessen the effect it has on those of us that experience it....I'm just trying to keep this in perspective....during a time when I need all the perspective I can get.
My thoughts to all.