8-14-2021 Two phone calls from Linda

(Tricia)

Friday, August 13: Yesterday afternoon around 3:00 I was in my office working when my cell phone rang, and I saw it was NHC's number. I answered, fully expecting it to be the case manager or nurse practitioner. I was shocked when I heard Linda's voice say, "Tricia, it's Linda."  She was calling me, she said, to ask me to come over to see her as soon as I could. I tried to explain that I was sick, and she responded that that was OK, she still wanted me to come see her. She then said, "See you in a few minutes," and hung up.

At the time, I had no idea how she had managed to call me, and when I called right back to ask, neither did the nurse on duty. I had not planned to visit Linda until the weekend because I was still feeling some residual effects of my illness. But given the phone call, and given that I no longer had a fever and my cough had largely subsided, I went to see her and double-masked before I went inside.

When I got there at 4:15, she was sitting in her wheelchair in a common area of the facility, and she immediately said she was so glad that I had come. We chatted, and while she was still confused, in her clearer moments, she mentioned how she simply could not imagine how anyone could take care of all these people. I said that, yes, the nurses were really doing a hard job, and she agreed. 

I intended to stay only for 30 minutes or so, only because I was still nervous about my illness (which I now know, after visiting urgent care Friday morning, is no more than the tail-end of a really bad cold). But I ended up staying until 9:00 in the evening. She ate dinner in the main area, we watched some television in her room, and we joked with the nurses as they checked her sugar level and helped her into bed. One of the nurses mentioned that the last time she had been on duty, Linda had not been able to stay awake at all, so she was shocked that Linda was up, alert, and speaking to her so clearly. Another nurse, Lynni, is especially kind. When I told her how much respect I had for her for doing this job, she said that she loved taking care of seniors and hearing them tell her their life stories.

The good news from yesterday is that Linda was able to sit up, stay awake, and talk longer than I have ever seen her do. In fact, the nurses told me that she had wheeled herself to the common area before I arrived—the first time for that. But she's still struggling in many other areas. For instance, when I had her practice her handwriting for a few minutes, it was clear that while she can spell and form letters correctly, her visual and spatial abilities are very negatively affected—she can only write in very tiny letters, often one on top of the other or out of order.

Her other struggle is that, the more awake she becomes, the more confused she is and the more she is aware that she is somewhere she does not want to be. Earlier this morning, when I was on a FaceTime call with her and Marilyn, she mentioned "being held hostage." A hostage is someone who is being held against her will somewhere she doesn't want to be—so, technically, she's not wrong.

Saturday, August 14: This morning, her frustration with her situation became all the more apparent when my phone rang with a call from NHC. Once again, it was Linda, but rather than asking me to come visit her, this time she was adamant that I come pick her up "from the bank" (where she worked for many years) and take her home. I explained that she was in a rehabilitation facility, not at the bank, and I couldn't come get her. She insisted I was wrong ("What, you don't trust me?" she asked), and she repeated that it was time for me to come get her and take her home. This kind of thing is heartbreaking.

This time I had the presence of mind to ask Linda to hand the phone to the person who had helped her make the call. I was soon talking to Tyler, one of the physical therapists at NHC, who had helped her use a hallway phone before he took her to physical therapy. When I explained what Linda was telling me—that she was at the bank and it was time for me to pick her up—he said he had had no idea. "She is just doing so well, and she's so awake," he told me, "I didn't think anything of it." I asked if, after we ended the call, he could reassure her about where she was and why she was there, and he of course agreed. After he handed the phone back to Linda, I told her I had just spoken to Tyler and asked her if he was a good physical therapist and whether she was ready to go to physical therapy. She responded yes to both questions, and had thankfully moved on from the bank conversation.

After I talked with the nurse on duty yesterday to try to solve the mystery of Linda's phone call, she added, as an aside, that the nurse practitioner was starting to wean Linda off the Depakote over the next few weeks. If someone would have let us know how the drug was benefiting her, we would have been less adamant about discontinuing its use. But each time we asked, no one could give us any reason except, "We don't like changing a patient's drug regimen after they come to us." I'm thankful that we'll be able to remove at least one drug, which even the medical staff had no idea why she was taking, from her regimen. At the same time, I'm frustrated that one, it too so long, and two, no one actually let me know directly. After asking so many times about it, I found out they were stepping down the dose only by accident.

Right now, we don't know if Linda's confusion will be permanent, or if it's being worsened by other temporary factors, such as her pneumonia, the course of antibiotics she is on, the Depakote, etc. As the nurse practitioner, speech pathologist, doctor, etc., at NHC love to remind us at every opportunity, "this could be Linda's new normal." They tell us this with that look that's a mix of patience, pity, and condescension, as if they are somehow revealing a truth of which we are otherwise unaware. And as I tell them every time, yes, we realize there's a possibility that Linda's cognition might not bounce back from this. But for now, at least, we have to choose to hope for better.