8-27-2021 An all-day visit (and an enlightening PT session)

(Tricia)

On Thursday, NHC’s case worker called me to give me the weekly update on Linda’s progress. This time, it was not all good news. Although Linda was still walking well, the case worker told me, she was most often refusing to work with the physical therapists beyond that. On many days, her only physical therapy was walking back to her room from the therapy room, using a walker for support, because she refused to do anything else. Because of that, the case worker said, the facility would likely not be able to report “progress” to Anthem, and any coverage would likely stop. But at the end of the call, she said, “but we won't be filing the report until Monday, so anything might happen between now and then.”

Over the last few weeks, we have certainly gotten an education regarding how Medicare works for patients with conditions such as Linda’s. Medicare will cover days 1 to 20 at a skilled nursing facility at 100 percent, as long as the patient shows continued progress toward recovery. After that point, partial coverage (around 30 percent) will continue for days 21 to 100 only for as long as that progress continues. Once the facility reports that a patient’s progress has stalled and recovery has apparently plateaued, the insurance company will shift that patient into the “long-term care” category, at which point all coverage stops and the full responsibility falls to the patient. We were happy to learn that Linda received approval for partial coverage from days 21 to 28. She is now in the fifth week, and we won’t know for a while whether the coverage will continue.

On Friday, I decided to go to the facility early in the morning, to try to catch the physical therapists before they worked with Linda. My goals were to see what the issue was and to try to get some progress on the books “between now and then.” When I arrived at 8:00 a.m., the nurses already had Linda up and in her wheelchair. The day actually started out rather well, in that Linda ate her entire breakfast. She also did really well with Paula, the speech pathologist, who worked with her to see how well she could guess the name of an object based on a set of clues (such as “it’s a clear liquid that humans must drink to live” ). The funniest moment was when the clue was “it has bristles and a handle and you use it to clean your teeth.” Linda’s response: “Oh, I don’t have to know that, because I don't use one—I have dentures!”  

After the session, Paula said she was pleasantly surprised because Linda got 80 percent of the questions correct, whereas the last time, she only got 20 percent correct. (She also had trouble coming up with “spoon.” which was “a metal object with a handle and one rounded end that you use to eat soup or ice cream.” She just repeated the word “soup,” which likely sounded too close to the word “spoon” for her to differentiate.)  Progress. The magic word.

Usually, physical therapy comes to get Linda in the morning soon after Paula works with her, but we waited and waited. Lunch came and went. I asked and was told that Linda was on the list for PT, and it would be soon. I realize that they have a lot of patients to work with, but in terms of Linda’s personal situation, the later in the day it gets, the more tired she gets. And Linda was fading. She had also fallen earlier in the day (without injury, thank goodness), when a very earnest nursing assistant tried to help her get to the restroom. She also was beyond distraught several times, because she said she simply didn’t know how she could get through this. I tried my best to reassure her, but she just wants to be able to walk so badly. She does not understand why she still can’t do it on her own. So a day that started out rather hopeful was getting rougher as time went on.

At around 3:00, I finally was able to flag down one of the PTs in the hall, to ask if they would be getting to Linda soon. I’ll call her Nora, for the sake of this post. Nora shrugged and said that she could take her now. OK, great. Before Nora wheeled Linda to the therapy room, I asked her, “I will be right here in her room, so if Linda refuses therapy today, before you stop with her, could you come and get me first? I want to see if I can talk her into it.” Nora nodded and said, “Sure,” before taking Linda down.

Less than ten minutes later, Nora comes back to the room with Linda. I knew that was too quick to be good, so I asked how she had done. Nora’s response: “Oh, she refused to do anything today.”

OK, here’s where I want to break in to say this: I realize that the nurses and therapists in these skilled nursing facilities are overworked and understaffed. I am aware, or as aware as one who is not doing this job day in and day out can be, at how incredibly hard it is to provide 24/7 care to people who cannot provide that care for themselves. The call button alarms are going off constantly, and the nursing staff are always being called to help someone get out of bed or go to the bathroom or clean up a mess. I understand all of that, and I try to be as cognizant of that as possible whenever I interact with the often very dedicated nurses and therapists at NHC.

But now let's get back to this moment. Just ten minutes prior, I had asked Nora to come get me and let me try to help, and yet Nora had given up on Linda anyway, regardless. So, I asked again, whether we could take Linda back and so that could try to persuade her to do the exercises. Again, Nora shrugged and said, “Sure.”

Over the next 20 minutes, I saw where the problem might be. Each time Nora asked Linda to do an exercise, there was a conflict or misunderstanding of some kind. For instance, Nora placed ankle weights on Linda that looked heavy even to me for Linda (probably five pounds each). When Linda said she couldn’t lift the weights, Nora’s response was that she knew she could. Heck, I knew that she could. But if the goal is to get the non-compliant patient with the brain injury to do the exercise, I thought it might be better to change tactics. My response: "She’s not going to do it with these. Can you please get her some lighter weights?”

Nora repeated that Linda was capable of doing it with the heavier weights, but complied. Then, when she asked Linda to lift her lower leg with the lighter weight, Linda thought she was supposed to lift her leg and wheel the chair at the same time and objected, saying she couldn’t do it and wanted to go back to her room. After I explained to Linda that she could keep the chair where it was, she completed the 15 repetitions on each side, as requested. Next, Nora put a resistance band around Linda’s knees and then, while standing, Nora showed Linda how to push her knees against the band. Linda saw Nora standing and making the motion, and Linda cried, saying she couldn’t stand and do that at the same time. I explained that Nora did not mean for her to stand up; then, I showed Linda the motion while I was seated. In this fashion, Linda did all five exercises that Nora asked her to do, but it required more patience and clarification than Nora seemed willing to give.

Between exercises when Nora had stepped away to grab another piece of equipment, and afterward, when we got to the room, Linda said, “I will do therapy with anyone else, just not her. She doesn’t listen and she admonishes me.” (Yes, spoon is a challenge to remember, but admonish is still in there!) To be fair, Linda doesn’t like therapy at all, and she is likely to be resistant with anyone. But even though she hates the process, she is more responsive to Tyler, the other PT on staff. 

I spoke with Nora afterward and asked her if she would mind if I helped with the therapy sessions over the next week. I would just need to be able to make an appointment with Linda. So, the next appointment for Linda will be with Nora at 11:30 in the morning on Monday. Nora might view my presence as an intrusion on her just trying to do her job, but that can’t be my concern. The truth of the matter is that if I hadn’t been there, Linda once again would have missed her physical therapy, which is crucial to her physical recovery, all over a mismatch of personalities.

Frankly, I wasn’t too happy with Nora’s approach either. She seemed to make no dispensation for Linda’s brain injury in the way she worked with her. Ed reminds me that it’s the PT’s job to push patients to get better, not necessarily to cajole or coddle. And he’s right on that. But in this situation, I don’t really care. Linda needs to get her PT, and if it requires me to be there to oversee and cajole, so be it. 

At that point, it was after 3:30 in the afternoon and Linda was so upset at the situation. She was slumped over in her chair, she was so tired, so we called the nurse to come put her into bed. Of course, this was a struggle as well. One nurse insisted that Linda needed to stay up in her chair until after dinner, which wouldn’t be served until after 5:00. Another objected, saying that if a patient was falling asleep in her wheelchair and wanted to lie down, she should be allowed to lie down. I’m listening to this, and just losing all hope, because I can’t even help my sister lie down when she wants to. Finally, I tell the nurse advocating for waiting until after dinner, “Linda has been up since before 8:00 this morning, and she simply can't hold herself up any longer. She needs to get into bed.”

At this, the nurse’s demeanor completely changed. “Wait, she wasn’t put into bed after lunch to rest?” No, no she wasn’t! Because it took PT until 3:00 to take her for therapy! That sent the nurse into gear getting Linda into bed, and Linda fell asleep the second her head hit the pillow. The nurse turns to me to tell me that in the future, if someone has not come to put Linda into bed after lunch that we should call a nurse to get it done.

OK, but how were we supposed to know that?

I had intended on leaving the nursing facility after Linda’s PT session, which usually happens in the morning. By this time, though, it was 4:00 p.m., and Ed texted me to ask if I was still there, and if so, if he should bring dinner. I had not eaten since the night before, so, yes, I thought dinner would be a great idea. Ed brought me a lovely dinner from Seoul Taco, and we chatted with Linda on and off throughout the evening as we watched Barney Miller on Antenna TV. At first, she was convinced Ed’s name was “Roger,” but we were able to turn her around on that before she fell asleep.

Left around 8:00 p.m. It was a long and exhausting day.

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