As I said when I started blogging about mom's dying, sometimes events will be out of order. I feel the need to begin with that because today I would like to write about another time I was left waiting and anxious while mom assumed I just wasn't there.
At this point she was back in the acute hospital. The infection had apparently spread to her blood stream and now they were going to do a test (I can't remember the name of) to see if any infection was on her organs, especially focused on her heart. For this test they would be inserting a camera, similar to, but not an upper endoscopy. She was very nervous about this test and although she was heavily drugged she would be awake and aware during the whole procedure. Before that though they had to place a new pic line because her arm had a blood clot so they were switching to her other arm. I asked her if she wanted me involved in that one and she said no. I waited with her outside of the room with her on her stretcher and me uncomfortable standing in the hallway. At this point she was pretty weak and each new test brought me concern that it would be the last time I would see her. Finally, they brought her in and the secretary (different from yesterday's secretary in her sweetness) brought me a pager and said they would page me when mom was finished so that I could roam the hospital. Roam I did (thank God) because the first place I roamed to was to the part of the hospital they would be doing the next test. I wanted to be sure I knew where it was so I would not be stressed in front of mom.
After an hour went by I checked in with the secretary who kindly reminded me they would page me when she was done. Putting in a pic line should not ever take an hour but they had been having trouble with blood clots and her arms were swollen. After 2 hours though I became freaked out and assured the secretary that if they were still placing the pic there was some kind of problem and I needed to be in there with her. She agreeably went to check on things and came back with a sheepish look on her face. They had finished over an hour before that. She said, "You should be able to find her back in her room." "Oh no I won't," I stated. "She was supposed to have another test and I was supposed to be there with her." The secretary apologized up and down that I had not been paged. I don't remember assuring her that it was alright because it absolutely wasn't alright.
I found mom in the next place. The doctors let me walk right in but they had already started the test and in fact, were almost finished. The good news they had for us as they sat looking at her heart was that the infection was not there.
We were often getting some kind of "good news" from the doctors and tests that never matched up with what was happening to my mom. She was dying. We just weren't sure what was physically killing her. Once they had used up every test they knew to give her they would sent her back to the rehab hospital sicker than she was before. To the point that one time the original rehab refused to take her. She was too sick for them to manage they told us and so we had to find another rehab. When my sister questioned the doctor about continuing to send mom out when she was sicker they informed us that if there is no test to be done she can't just stay in the hospital. We just found that so ...GROSS. When you go to a hospital I always assumed you either died or came home better. Why was my mom continually going to rehab sicker than when she entered the hospital and yet everybody said she should be getting better. If they could have just had the knowledge that, "no, she shouldn't be getting better." We would have made some plans for how she could end her life happily at home. But we were still dragging her through everything so that she might get better. In fairness, she was fighting the good fight too. She wanted to get better and to do that we needed to know what was wrong.
Meanwhile, mom and I talked about everything under the sun except dying. Mostly I told her about what Krista was doing and she and I made plans for when she came home. She was so damn lonely in the hospitals and she got great pleasure when I showed up at 330. She counted on that time. I take some peace in that.