Day 5 continued

So, this has been a LONG day! The days that are the worst are the ones that she is not comfortable. I just don't get this whole comfort care thing. And to rant for a minute, there are a million things I don't understand about health care. Ultimately, it is a f$@%ed system and families absolutely should not for one second have to deal with the stuff that we have had to deal with in the last few days!! There are a million more things I could say on this topic, but quite frankly I am too exhausted and I am not done fighting about the system yet :-( All I can say is definitely make sure you talk about final wishes with your loved ones and really understand the difference between sustaining, comforting, necessity, and what's considered humane.
Ok...enough! My head hurts, my eyes are crossed, and my jaw hurts from clenching and discussing, so I am done with it for now.

Like I said before, today was not a great day for comfortable care. She had the suction turned off, had a reduction in morphine for a while and a lot of visitors. My mom is having more trouble understanding what is going on with her care. She frequently grabs onto something that was said and then has a difficult time moving past it. Anyone that knows my mom, it is common for her to take longer to process things, but this difficulty is increasing. And...I would like to say that she trusts her daughters completely, I mean we are totally doctors right?? But she doesn't and so she frequently needs to hear it from the doctors or the nurses to truly believe it I guess. I don't know really know how to describe it, but today she did not take a shot of morphine right away because she had it in her head that it meant her suctioning had to stop. We tried to explain it to her, but she did not get it, which prolonged her getting the dose of morphine. However, thanks to Nurse Issac, who really works amazingly well with my mom, made her understand why she wanted the shot of the morphine. So, I guess she finally took two shots of morphine very close together and also got Adavan to help calm her down. She then took about a 3-4 hour nap. A much needed nap I believe.

Some of the visitors were the Schieber kids, as stated before. After their visit, Laura, Josie and I met, Marsha and Mary and all had dinner together. It was nice to catch up with the cousins. After dinner, Josie and Marsha took two of the Schieber kids back to college, while the other Schieber kid, Hannah, Mary, Laura and I went back to "the home." It was at "the home" that we realized that we needed to have a detailed discussion about my mom's care and quickly became very thankful for my cousin Hannah. She was just what we needed...a third party person, invested but not quite as emotionally charged as the rest of us. She did an excellent job helping us decide what we needed to ask and how we needed to ask the right questions. We will be bringing her with us to talk and make a detailed plan with the docs tomorrow. So, anyway hooray for Hannah.

I just got a text that my mom has woken up, so I better march back down there. I hear she is dancing...so I am assuming the morphine is working just fine :-)

Oh...and go figure...Frankie's flight is delayed, so she will now be arriving at 11:30. Should have known...


OH...One more announcement. Phone calls. I cannot decide when phone calls are welcome. It is really quite a moment by moment decision. Those of you that really want to talk to her please call my phone first, 480.205.5913 and I can decide if she is up for phone calls. Really the best way to get a message or thought through is to post it on this site. Thanks!!