10-18-2021 Fighting the lies an injured brain tells

(Tricia)

We are trying a new schedule of visits for Linda this week, to give Marilyn some time to heal from the tumble she took! For at least the next week, I will be seeing Linda in the morning and Ed will be visiting her in the evenings. 

Because I’ll be there during the day, I’m also hoping to speak to the physical therapy team about how we can get Linda the rehab she needs. Now that insurance has stopped covering Linda’s care, the facility will provide only three “restorative” PT sessions each week, compared to the six she was receiving before. The problem? Linda is refusing to participate! She is maddening. Marilyn spoke to Tyler, one of the physical therapists, on Saturday, to ask whether she was receiving these PT sessions. Tyler said for the most part, no. He explained that one day, he and Justin went in and begged her to do her therapy. She was, in Tyler’s words, “downright rude.” He said that he didn’t want to repeat what she said, but that she was so nasty she made poor Justin, who is as sweet as can be, cry. They simply are not going to fight with her, and they cannot force her to do the therapy if she outright refuses.

It’s clear that the brain injury has affected Linda’s executive functioning and social skills. Linda, in her right mind, is stubborn but never (OK, rarely) rude. In a rather cruel twist of fate, Linda’s brain injury has heightened her willfulness and desire to do things her own way, to such an extent that it’s causing her lash out at those trying to help her and to sabotage her recovery in so many ways. When left to her own devices, Linda is going to say no to therapy every time. It’s up to us to take on the very difficult task of getting Linda to stop listening to her broken brain, which is telling her that she wants to be in bed and that no one will tell her what to do. We need to convince her to listen to us instead.

And, lo, the universe tilted back her head and let forth a mighty laugh before saying these telling words to Tricia, Marilyn, and Ed: Good luck with that. :-)

Appointment with the Endocrinologist

As Linda’s situation grows more complex, though, we are trying to do what we can. For one: I finally was able to take her to see an endocrinologist last Wednesday. I have always been shocked that Linda—who has diabetes and a thyroid condition—does not have an endocrinologist!  She has always had her conditions treated by her primary care physician, even when the diabetes began to spiral out of control. So, she now has an endocrinologist—mine.  I’m so grateful that my own endocrinologist made room for her as a new patient, and even worked us into a slot when another patient cancelled.

After Dr. Ramanathan and her nurse practitioner looked at the recent history of Linda’s blood sugar readings, which have swung wildly from the 40s to the 500s, they had an interesting theory: Could Linda possibly have late-onset Type 1 diabetes, rather than Type 2? The doctor said that she has seen two people in her practice in just the last few months, both older than 65, who had been misdiagnosed as Type 2 diabetics—it turned out they actually had Type 1. Apparently, the doctor explained, when patients present as diabetics in their senior years, Type 1 does not occur to most physicians as a cause. I certainly never knew it was possible. But the fact that Linda’s sugar is so wildly out of control, for reasons not always related to what she eats, makes it worthwhile to test for Type 1.

The doctor has ordered the Type 1 antibody test. The nurses at NHC were supposed to take the blood work today, so we won’t know the results for at least a week or more. I suspect that the diagnosis will still point to Type 2. But if the test does end up showing that she is Type 1, that would explain so much.

My next step is to try to find Linda a neurologist, who I hope might submit a new order for physical and speech therapy to the insurance company, so that she can have full access to daily therapy again.

This Morning’s Visit

When I arrived to see Linda this morning at around 11:00, she was in her wheelchair, but staring off into space. The television was not on, and she looked more despondent than ever. It took me several minutes to even get her to speak, and when she did, she said she only wanted to get into bed. I told her that was not what was best for her, that she needed to do her physical therapy if she wanted any hope of recovery at all.

At this point, she said the words that have one of our biggest obstacles since her therapy began: I don’t want to. As she utters them, either she looks at you with an expression of near-anger to indicate that she will not relent to reason, or she bursts into tears that we’re not completely convinced are real. In some instances, it’s pretty obvious she sometimes uses them to try to get us to leave her alone!

This morning, it was the tears. We are quickly learning: A brain-injured patient with faulty executive function will pull out all the stops to get what she wants. Or in this case, to get out of doing what she doesn’t want. 

I made her look at me and asked her, “Why? Why does 20 minutes of exercise seem so awful?” Especially when it’s the only way to regain mobility and at least some independence? And that’s when she said the words that could be an even bigger obstacle: Because I can’t do it. 

I realized then that her brain, in its injured state, is lying to her. It is telling her a story that is not true. The fact that she believes that story is turning out to be as big an injury as the aphasia, dysgraphia, memory loss, and faulty nerve function. She is refusing therapy not because she can’t do it, but because she keeps telling herself she can’t do it. 

I spent the bulk of my visit with her today showing her that she is capable of doing these exercises—bicep curls and leg lifts with light weights, and pushing against a resistance band. She fought with me almost the whole way, but she did them. Once she was done, I asked her how she could say she was unable to do these exercises, when she just did them. She just shrugged her shoulders at that!

In one last effort to convince her, I asked her if she remembered learning to play the piano when she was younger. When she said, yes, I asked her what she had to do to be able to play the piano well. And she responded, “Practice.” I explained that this is no different, and she at least said she understood that to be true.

They delivered lunch soon after (which was another battle...but she ate!). Once she finished, I finally let her hit the call button to ask the nurse to come and help her get into bed. Once she was tucked in and happy to be in bed at last, she said, “I’m going to tell Ed how you tortured me today.” And then she smiled that coy smile of hers, which made clear that my so-called “torture” did not seem so bad in retrospect. I told her to go ahead and tell him—I know whose side he’s going to be on!