Just as I started my vacation from work, R was moved from the telemetry floor that I work on to the regular floor that my daughter, Sarah Kate works on. Sarah knows R well, so she's been taking care of her. I was able to keep up with what's been going on with her through my daughter. Sarah called me when she got home from work Tuesday night and told me that R would be going home on Wednesday and that hospice was going to manage her case from her home. They were sending a hospital bed and that R and C were finally agreeable to that decision. So, I left for work early yesterday so that I could visit with R before she was discharged home. I got to work to find out that instead of going home that R was being transferred back to our unit. When I went to my unit they had, of course, assigned her to me. Before I even got report I went to R's room. There she sat on the side of her bed (with her red lipstick on!) visiting with a couple from her church. You know how a little child will hold their arms up in the air and make a motion with their fingers for you to pick them up? Well, that's what R did. I couldn't get to her fast enough. The love I felt in that embrace was one of the most humbling things I've ever felt. I will never ever forget it. "It's about time you decided to get your butt back to work", she chided me. I assured her that I'd been keeping up with her through Sarah. I was forgiven. She went on and on about what a sweet girl Sarah Kate was. "You can be proud of her", she said. I was. I've mention that R can be difficult. A lot of nurses don't like taking care of her. Sarah loved her by osmosis!

As for why she was transferred to us instead of going home with hospice, I've gotten a couple of different stories. I was told that she went into atrial fibrillation and her labs were out of whack and that's why we got her. But, she's been in atrial fibrillation for years, it's a chronic condition with her so that couldn't be it. As for her labs, of course they are out of whack. She has leukemia and is anemic. The other story I got was that C wanted her to be on a monitored floor so that someone would know exactly what her heart was doing. He said, and I quote, "If she dies here, no one will know it".

 Her breathing has gotten a lot worse. Up until yesterday she had been on 2 liters of oxygen by nasal cannula. When we got her she was on 6 liters by oximizer. The slightest exertion, even turning over in bed, makes her breath as if she'd run 100 yard dash. When she gets so short of breath she panics, understandably. It's painful to watch someone gasp for air. She complains of pain in her abdoman and side. She says it feels like "there is something there". It's hard for her to find a comfortable position. She doesn't want to eat anything. It's the most helpless feeling to not be able to make her comfortable. I gave her pain medicine, I gave her something for anxiety and I tried and tried to find the perfect placement for pillows to make her comfortable. She is just miserable. But more than anything she is scared. Finally the medicines kicked in and she fell asleep. When I next looked in on her C was sitting in the chair beside her bed holding her hand and they were both sleeping. I pulled the door shut and hoped they were having sweet dreams. An hour later, when I looked, C was gone and R was awake. I told her that I was sorry that I hadn't gotten to talk to C. She didn't know that he'd been there. She asked me to dial the phone and she called him at home. He said he decided that he'd let her sleep and he'd go to church. The fear and anxiety on that mans face would break your heart.

While sitting in the nurses' station charting the monitor watcher told me that R had just had nine beats of V-Tach. Here is our problem. Her code status was up in the air. Technically, when someone has agreed to hospice they have agreed that nothing will be done to prolong life and they are agreeing to pallative care. R and C aren't able to grasp that and are reluctant to give up the fight. They have been told that the fight is futile. They have been encouraged to accept the hospice alternative. They waffle back and forth between hope and reality. I most definitely want to be with her when she dies. I DO NOT want to be in the position of deciding what to do if she should go into respiratory failure or cardiac arrest with the code status being so cloudy. The V-tach prompted me to have the code status decided pronto. I went through her chart and found that they had made her a DNR (Do not resucitate) before they had moved her to our floor. Well, this didn't make sense. If we aren't going to code her, there is no reason to be on a heart monitor. Of those managing her case, the left hand doesn't know what the right hand is doing and no one seems to be able to get a decision made regarding code status. One side keeps waiting for the other side to make the decision. I called her PCP and talked to his PA. I asked about code status, telling her that she had been made a DNR that day. She said that was news to her and she put me on hold to go talk to the doctor. She comes back to the phone and tells me that that's great, but that the doctor wasn't aware of it. This made me uncomfortable because I need to know is she or is she not a DNR. She told me that I should go talk to R and ask her what she wants. So, that's what I did. It's a hard conversation to have with someone. I sat on her bed and held her hand. I asked her what she wanted to have done if something should happen to her heart. She asked me what I meant. I asked if she would want us to give her CPR and put her on a ventilator if her heart should arrest or if she went into respiratory arrest. She was adament that she did not want that. OK, one down, one to go. R is of sound mind and well able to make her own decisions at this point. Legally, all we need is for her to say that. However, I needed to hear C say it also.

After church C came back to see her. Their son and his family were also there. R began having trouble breathing again and became anxious while trying to ask her daughter-in-law if she knew which "dress" R wanted to be buried in. This was too much for C. He became teary and insisted that it was time for them all to leave so that R could rest. R became frustrated because this was something that she needed to talk about. Her frustration made her heart rate go up and made her even more short of breath. She gasped as she said, "it feels like my heart is just going to give out on me". The family said their good-byes and I asked them to wait for me in the hallway while I tried to settle R down. I gave her some Demerol and went to talk to C. It was one of the hardest things I've ever done in my life. I asked him what he wanted me to do if she should go into cardiac or respiratory arrest. Like R he asked me what I meant by that. So, I explained to him what is done during a code. I told him that if we did that she would be put on a ventilator. He immediately began shaking his head no. I told him that I needed for him to understand exactly what that meant. He assured me that he did. He doesn't want her to be in pain. I told him that we could make sure that she wasn't in pain. Then he burst into tears and grabbed hold of me and cried like a baby. I cried with him. I've never felt so sorry for anyone in my life. Why does love have to hurt so much? His son put his arm around him and they headed for the elevator. R's daughter-in-law stayed back to talk to me. She gave me her cell phone number and asked me to call them immediately if I thought that the end was near so that they could be there with C. I gave her my phone number and asked her to call me if I should be off work and they got the call. I've told them at work that I want to be called when "something happens". Depending on who's working at the time, I will get the call. I better get the call.

R is going to die. It could be today, it could be three to six months from now. I don't think it will be very long though. Her heart is just so weak. My prayer is that it will be a good death. I can't stand to see her suffer. Many times we've seen a spouse die very soon after a death like this. I just know that C is going to grieve himself to death soon after we lose R. She calls him "Daddy". They absolutely adore one another. It's been a gift to me to watch them interact. If you're praying for R along with me, could you please say some extra prayers for C. And while you're at it, could you ask God to give me what I need to be able to do and say the right thing when that moment comes. I'm going to need all the help I can get.