A so-so day

Short update

• No bowel movements, but some urination.
• Ahma was in pain most of the day. It now includes her rib cage and also her hip and right calf. 
• We are exploring different pain management options (trying to avoid the more serious ones, e.g. morphine, as much as possible, per the parents' wishes). There is a possibility of getting a pain medication patch that you change 3 days a week. However, the side effects are roughly the same. I suppose it helps with not having to orally take the harder stuff.
• Tiffany Priester, Ahma's VNA nurse manager, came to see her and saw how deteriorated Ahma was. She tried to shuffle around her budget to see if we can request more hours of care (for our consideration as an alternative to hospice care). She said if we cut down the nurse visits to once every other week, we can increase our plan to 12 hours of home health aid care.
• Tiffany also said that we probably wouldn't be able to do the paracentesis (the tap to drain the fluids in her abdomen) as an out-patient because we would have to monitor her blood pressure and all that. This is because she would be losing major electrolytes in her body and it could really throw her body off course and into a downward spiral. It's a risky procedure overall for a short period of relief, if it's successful.
• We are eagerly awaiting the hospice consult tomorrow at 5PM.
• Ahma keeps asking to just give her a "mercy death." I asked her if she knew anyone who got that done. Ahma said she knows people have had this done before. I asked her if she can tell me who so we can find the right doctor. She doesn't answer.
• Uncle John is here to visit. He saw how difficult it is for her to even just go to the bathroom. 
• Ahma really is unable to stand up by herself at this point. We let her go on the commode anyway because it might give her a sense of dignity. Letting her use the commode lets her feel like she still has some control... But I'll be honest... I've had urine on my feet a few times now.
• The thing she fears most is "bothering people" in the process. I don't know how to help her feel like she isn't bothering us.

My editorial: The moaning is hard to deal with. I have found that I've closed the door to her room (though the aid or someone else is in there) just to avoid it. I know this is cruel on my part, but that's how I can "deal with it" during the day while I'm working. But essentially, this is how I feel like we're treating her daily, even for those of us who aren't physically near her, when we deny what it is she is experiencing and fail to tell her why she has such a "weird disease." I know I keep advocating for us to tell her, but everyone seems convinced that she would be "deathly afraid" of a "cancer diagnosis." Did you see the irony in that? 


Anyway, I don't mean to be rude or ironic. I just hope that we can help her die with dignity and that we can have integrity and speak truth in the process.