1-11-2022 Still improving, still infuriatingly stubborn :-)

(Tricia)

As Marilyn's last post implied, Linda's last few weeks have been up and down. She is still very confused, especially in the morning. But she's also a bit more reachable--when she asks where Mother is, for example, we have started simply telling her immediately and calmly that Mother has passed away. Whereas before, she would begin crying, she now gets a pained look on her face, but says, "Oh, that's right." When given gentle reminders, she is accessing the memory more and more.

Last week, Linda had an appointment with a gastroenterologist (finally!), who has suggested Linda go on a dairy-free diet for the next couple of weeks.  It's hard enough to make Linda's meals at the facility low-carb, and going dairy-free has added an additional challenge!  But I now have a new approach: I take a Sharpie and mark out everything I do not want served by mistake, and I circle everything we want her to receive. Marilyn, too, recently expressed some frustration with the speech therapist about high-sugar foods getting mistakenly served to Linda. We think that message made it to the kitchen. Now, when Ed and I arrive for our evening visit, even the nurses let us know that Linda was served the right food.  

That's not to say that there aren't still some incomprehensible snags. For instance, for last night's dinner, I had circled "chilled peaches" on the menu, something Linda really likes.  But when we got there, the nurse on duty let me know, as she was shaking her head, that the kitchen served Linda (drum roll, please)....a bowl with a single peach segment in it.  

Why????  I realize that is a rhetorical question, but I still cannot stop myself from shouting it into the void. Even if the peach was sweetened, she had enough leeway in that meal's carb count to manage it. Our challenge now, given all the dietary restrictions and the limited menu options, is to make sure Linda gets enough to eat. (I have got to start trying to enjoy cooking!)

The good news is that Linda is now a handful for the nurses. The same nurse who told me about the pathetic little peach also said that Linda has been walking down the hall WITHOUT HER WALKER. The nurses and the occupational therapist are trying to get her to at least take it with her just in case, because she is still so unsteady on her feet. But she also is incredibly stubborn! She insists that she can walk without support or assistance, despite evidence to the contrary.

The last couple nights, though, she has been extra-motivated to get out of there. She keeps asking, "What can I do?" and when we tell her "physical and speech therapy," she has said, "Yes, I'll do it, as much as necessary."  The problem, though, is that now that Linda is ready and willing to engage in therapy, we have not been able to convince the facility's skilled therapists to see her regularly. Even after we told our case manager that we would pay for the sessions, and the case manager set up a plan, I don't think that the physical therapists ever saw her. At least, we have never seen them working with her, no charges have appeared, and no reports on her progress have been given, as the case manager had promised. 

The fact that the skilled physical therapists will not work with Linda, even on a private-pay basis, suggests that they don't believe in Linda's ability to improve. That's even though, nearly every day, the nurses tell us that Linda has done something else that they had not believed she could do (walking down the hall with a walker being the latest!). 

The only therapist who works with Linda is the facility's occupational therapist--he has no degree in therapy, but he works with all of the residents to help them maintain their capabilities as long as possible. He is the sweetest person ever, and we are very thankful for him, as he is the only one to see Linda on a regular basis. That said, his focus is for her to maintain her abilities, not to improve.

The speech therapist saw her for about three weeks until last week, when she passed by Linda's room and happened to see Marilyn and me there visiting. She stopped to say hello, and then, as an aside, said, "Oh, by the way, I wanted to let you know that I've discharged Linda. She wasn't improving, and I didn't want to continue taking your money."

On the one hand, it's good that she is conscious of our finances. On the other, she discharged Linda from her service WITHOUT CALLING ME FIRST.  She didn't ask us whether that was what WE wanted. If she hadn't seen us that day, she wouldn't even have told us that she was no longer going to see Linda. She would have just stopped without a word. Also, keep in mind, she unilaterally made this decision after Linda had one bad week. As we've said before, Linda's recovery has been steadily going upward overall, but there have been a lot of downs along the way. Now that Linda is back in the "up" column, the speech therapist has already checked out.

So, I'm done trying to work with the therapists there. We now are waiting to get an appointment with a physical rehab physician that Linda's new neurologist referred us to--I'm really hoping that will result in a more coherent treatment plan. In addition, I'm now working with Linda for 15 minutes or so every night using a cognitive therapy app, called Constant Therapy. I had discovered this app a few months ago, but at the time, Linda was not yet able to do the exercises, which are focused on pattern recognition and memory.  But over these last two weeks, she has been able to complete exercises that had previously left her lost.

It's so sad that there is really no mechanism in our healthcare system to guide a family through the maze of issues that arise with a complex medical condition. We have had to decide what doctors Linda needed, what care plan to pursue, and what therapy we would like Linda to have, with little to no overarching guidance from those who should know better. But I'm hoping that soon, the pieces will fall into place and we'll find at least one doctor who is willing to provide us with a more comprehensive plan going forward.

(Update: Just as I was finishing this blog post at around 5 this evening, the facility called to say that Linda "took a spill" again today...likely because she was on another "walkabout" without her darn walker! They're ordering an x-ray of her hip this evening, because that's where she is complaining of pain. I'll post an update once we know how the x-ray turns out.)