3-20-2022 Not many options...

 (Tricia)

It has been a relatively quiet weekend in the hospital—the good news is that Linda seems to be in less pain than she was before. The nurses are able to move her from bed to chair and back, using the Hoyer lift, with no trouble whatsoever. She is still in pain when they turn her, but even that seems to be less than before. When I got here tonight, she had eaten her entire dinner and was tired, but comparatively clear. After I was here for about an hour, she began to complain of pain and wanted to go back to bed. But the nurses and I were able to convince her to stay sitting up in the chair for another hour—laying in bed is the worst thing for her right now, so luckily, she was able to make it that extra hour. Once they got her back into bed, though, she was very happy.  “Oh, that feels SO GOOD!” has become one of her catch phrases. :-)

More good news: Linda had two good days of therapy on Thursday and Friday, where the physical and occupational therapists were able to help her up into a frame that supported her while she stood.  She stood in the frame for 12 minutes on Thursday and 18 minutes on Friday, and was able to do a few very light exercises with her legs. We’re still going to have to fight with her to do her therapy, but as long as PT/OT will work with me so that I can be present for therapy, at least in these first days, I think Linda will continue to participate and improve. 

On Thursday, though, I did have a run-in with that day’s therapist, who had received my request to have some kind of indication of when therapy with Linda would take place. She immediately began to explain that they had a “fluid schedule” here at the hospital, and that they couldn’t work according to any schedule. And when I told her that I didn’t need a “schedule”—just an indication of what days they might work with her or even a text 15 minutes before they knew they would be headed to her room.  But the therapist continued to act as if these options were impossible.

Then, in the same breath, she says, “And when we have worked with her, she was combative and didn’t want to participate.” The implication was that if Linda wasn’t going to cooperate, oh, well—nothing she could do.

I got upset at this point, and told her that THAT WAS WHY I WANTED TO BE IN THE ROOM. I swear, it’s maddening. But at that point, she said that all she could do was put a note in the file and they would “do their best.”

Then, the therapist started working with Linda. And when Linda started to balk, I stepped in to calm her down and encourage her to continue. And guess what—Linda got her full hour of therapy without the drama.

I guess I made my point, because after the hour was over, the therapist went from “we’ll do our best” to asking me what my schedule was for Friday and saying she’d ask Friday’s therapists to work with Linda in the afternoon. I was there, and therapy went just as well.  The therapists that day let me know they would work with Linda again on Monday afternoon. 

Good grief, how hard was that? I know that for most patients, a “fluid schedule” works just fine. But every once in a while, they’re going to have to make exceptions if they want more complicated patients to get the therapy they need. Thursday’s therapist made it seem like she and her colleagues had never encountered someone with a brain injury before.

In the meantime, I spoke with the hospital’s weekend case worker twice this weekend. Yesterday, she asked me to call Linda’s insurance company (Anthem BCBS)  and register a complaint regarding their denying to cover an LTACH for Linda, as the doctors recommend. I did that, for all the good that it’s going to do. (The Anthem representative was extremely sympathetic—I could tell, while she read her spiel about why the claim was denied, her heart wasn’t in it. At the end of the call, she said she was so sorry and that she hoped for a fast recovery. That has to be one of the more soul-sucking aspects of working for an insurance company, for sure.)

Then, today, I spoke to the case worker again. She said that only three skilled nursing facilities in the area said they would be able to accept Linda—two of which have a 1-star rating on Medicare.gov, and one of which has a 2-star rating. Not to mention, one has an “abuse warning” and all three are much farther away.

When I asked if they had contacted the facilities that were our first choices, the answer was “no.”  Because they hadn’t yet asked us what our first choices were. 

So, we continue to wait. But a 1-star-rated facility is NOT acceptable. 

For anyone who is or will soon be choosing a Medicare plan, I want to give another warning against “Medicare Advantage” plans.  As I noted in my last post, the reason we are in limbo right now is because Linda has a MA plan, rather than Original Medicare plus a supplement. Original Medicare-plus-supplement costs about $100 to $200 more a month than Medicare Advantage, but it has no gatekeepers—if a doctor recommends a treatment, you can get it; there is no “in network”...you can go to any provider, anywhere, as long as that provider accepts Medicare. If Linda had had Original Medicare, she would be in the LTACH already receiving enhanced rehab services, instead of dealing with all of this insurance company awfulness.

For anyone who is getting to Medicare age, I can tell you to avoid MA and pay for Original Medicare and a supplement if at all possible. Here’s a great video explaining the difference between the two better than I can. 

Tomorrow, I’ll call our two first choices—DePaul Anna House and Lutheran Services Breeze Park—to see if one of them might be able to help Linda. I’m guessing that this week things will settle one way or another. Just hoping they settle in a way that’s best for Linda—not the insurance company.