A year ago that first Monday morning in June brought back the hustle and bustle to the hospital. I thought I had found quiet spaces in the hospital to have video chats with family, but it turned out they were waiting rooms for the doctors' offices so were empty on the weekends. All the medical students were back so doctors' rounds were going to be at full capacity.
The first thing my mom brought up when we arrived was her medical directive. My brother had brought a copy with him, but the original was in a bank safe-deposit box 90 miles away. My brother was ready to go get it. At that moment a chaplain we hadn't met before appeared in the doorway and asked if she could visit. We were in the middle of the discussion about treatment decisions, and Cass was the perfect person to be a part. Mom started explaining that she was trying to figure out next steps and Cass asked all the right questions. Mom concluded that what she needed at that moment was a DNR order. She decided to talk to the doctors during rounds.
Then Cass discreetly took me aside and asked me if I knew that the hospital offered palliative care through a Support Team of doctors and social workers. I had no idea and said we were at the very beginning of these discussions. Cass suggested I ask the nurse for a meeting with the Support Team.
Like clockwork the doctors entered the room for rounds. The doctor in charge for the week said there would be an assessment by a speech therapist to determine if my mom could swallow well enough to have fluids and soft foods by mouth. She went through the routine of talking about what had changed and what hadn't. I asked Mom if she had anything to say, and that's when she talked about her quality of life, how she didn't see a way forward, didn't see herself getting better or being able to walk. She told the doctor that she wanted DNR written in her chart. I have never seen a doctor try so hard to not look surprised; she explained exactly what that meant and asked my mom if that was what she wanted. The doctor looked at me and my brother, and I said this was my mom's decision. The doctor again made sure my mom understood that an order of No CPR and No Intubation would be in her chart; my mom stated that that was what she wanted.
Later that morning the speech therapist declared that Mom could have ice chips, fluids, and pureed foods - the first things she could have by mouth in nine days. The nurse said this was a step toward moving to a room. I messaged family with the good news.
The afternoon came with yet another chest x-ray. There was a bit of congestion and it was ordered that she could have nothing by mouth and was again put on high-flow oxygen. She wasn't on the vent, but every other bit of progress had been erased in minutes. I honestly considered sneaking her a bit of water, but then if she choked I would have been devastated.
My brother supported my mom, but he was having a very hard time with the direction things were taking. From the first day he had questioned the doctors and nurses about every treatment decision because he wanted to understand what was happening and why. Now our mom was making decisions that he didn't understand as hard as she tried to explain.
So I took it upon myself to make my way to the nurse's station to ask for a meeting with the Support Team because my mom wanted to know her options. I asked the nurse to keep it between us until we had an appointment for the meeting. He said he would make the call, and that it wouldn't be until the next day.
So many things to keep quiet. My mom was adamant that no one other than family and the home health workers back home were to know that she was in the hospital. I asked her if she wanted me to let her late husband's family know and she was firm in her answer "No."
I wrote in my notes that Mom was frustrated, overwhelmed, angry and miserable. Now that she was ready to make decisions she didn't want to wait. I explained to her that it was like the government - she worked for the federal government for many years so she immediately knew what I meant - and that it would take time to get all the right people together to meet with her. I was concerned for her when I left that evening.
We didn't find out until the next day that there were things that we still didn't know, despite one or both of us being with Mom all day every day and asking questions all along the way.
It was a restless night for all of us.
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