You summed up my world for the last 18 mths. You really did a good job of it. I can actually laugh about it when its put your way. I think I lost my sense of humor a long time ago. I'm working hard to try and find it. Now that you mention it I have a little OCD myself. Trust me your life will become a LITTLE (notice I said little) easier if you can learn to give up that part of it right now. Just hang in there and keep doing the good job you are doing.
Post Edited (june17) : 10/31/2008 3:37:10 AM (GMT-6)
WorriedSis, welcome to the forum. I am so sorry you are having to deal with this horrific situation, but there are many here who have been in your shoes. I am sure you will find a lot of support here.
Hospice is a fantastic organization. They are very good at keeping patients comfortable and also knowing when the end is near.
Has your sister stopped drinking? That is the most important thing for her to do. Also, if she can eat, try to give her a diet of fresh fruits and vegetables, and lots of pure water. Is she on any medication? If she has ascites, she should be taking a diuretic, such as Lasix. She also should limit or eliminate salt from her diet. I suppose she is still smoking. That's a hard habit to break and may not be possible for her at this time.
It's a shame that she let her condition get to the point where nothing can be done. However, you just have to go forward from this point. I commend you for taking her in. I know it can't be easy. If you find it difficult financially, you might be able to get food stamps, at least for her. Also, be persistent with SS and Medicaid. Is her 9-year-old with her? If she has a child under 18 in the home, and meets financial criteria, she could get Medicaid. Otherwise, she needs to have official confirmation that she is disabled. She may, however, be able to get emergency Medicaid. I am surprised that the hospital didn't pursue that while she was inpatient. Do not give up on SSI/SSD. Almost everyone gets rejected the first time. I was rejected twice and it was going to court...then my attorney called and said that they were approving me and there would be no court appearance. It would be in her best interest to get an attorney...or you get one for her. There will be no cost unless her case is approved by SS--and then it's a set amount of 25% of her lump sum back payment. Don't think it's not worth it because she doesn't have long to live, because just how long is quite unpredicable. A lot depends upon the care she receives and what she does to help herself.
I'm sure other members will have input for you.
I'm so glad to hear that your sister has stopped drinking. Also, I agree that Hospice is awesome. I'm so glad that they are getting her meds for her. However, the attorney's fees will be automatically taken out of the lump sum back pay if she is approved, before she even gets it.
Hang in there, and feel free just to vent if you need to.
I'm sorry I didn't see your post earlier. I hate to hear you sounding so "down." Are you on an antidepressant? Perhaps it would help. Also, some are good for sleep. It's bad enough that we folks with liver disease are tired all the time, but it becomes impossible to function without decent sleep. I suspect that might have something to do with your frequent cries and blue feeling. PLEASE discuss this with your doctor. There must be something you can take for sleep which wouldn't be injurious to your liver. I take 20 mg of Flexeril about 45 min. before I want to go to sleep. It helps make me sleepy, as well as prevents muscle pain during the night. When I still have trouble going to sleep, I repeat the Serenity Prayer over and over to myself, like a mantra. At some point I fall asleep.