They Gave Up On Me

“They gave up on me.”

We are driving home from Loma Linda after Casper decided not to continue with ECT. She gave it all she had, but it was just too hard on her. Every treatment left her agitated and scared. She finally called an end to it.

When we arrived for what turned out to be the end of treatment, we were met by staff that sat us in chairs, and had us wait for the doctor and anesthesiologist. As we waited we saw another patient come back from his treatment, resting quietly on his gurney, attended to by staff. The lady who went before him was fifteen minutes post treatment, and she was already being offered juice by staff. She looked tired but calm. After every treatment Casper looked like she’d run a marathon- sweating, marks on her face and arms from being held down, and absolutely frightened. There was only one time she’d not had that reaction.

The docs arrived, and sat close to us. The room is tiny, and there was not much space to talk. Casper tried to listen as her own Ambu bag was hung on the gurney closest to us.

“We need to talk about your noncompliance. Do you want this to work?”

Casper looked stunned. She was already having trouble that day. She couldn’t get the date into her head, and she could not remember the events of the last week. She was tremoring like crazy (probably not the best term to use or think in an ECT unit).

“You have missed too many treatments. I usually dismiss patients like you, but because of the circumstances I’m willing to keep you if you promise to never ever miss a day again.”

Hold up. Casper has missed one a week, always after a bad night from her PD symptoms. Days she literally never gets out of bed. “You said she could do the treatments twice a week if it was too much for her.”

“It has to be three times or it does not work. Casper, you have to decide to come in here every time with a smile on your face and to decide that it will be awful every time but it will be worth it to you in the end. If you can’t do that, then we need to talk about alternatives.”

I watch Casper’s reaction as she tries to process those words. My head is, of course, firing like rockets with reactions. I keep my face calm and say nothing.

Casper asks about alternatives. They mention meds, and then the anesthesiologist remembers that Casper has been denied PD meds until she completes this treatment. They tell us they can arrange meds.

I finally ask about the reaction to the treatment. “She had one that went well. Why can’t you get her to that again?”

The anesthesiologist tells us she did everything exactly the same on the day Casper was calm and peaceful and the following day when she was agitated again. I tell her something in that does not add up- if everything was identical, why such an opposite reaction? She denies that there was any difference, even though one time there was post treatment sedation and the second time there was not.  

Another patient arrives from his treatment- calm, peaceful, not agitated.

I mention to the doc that Casper was the only one we had witnessed having such a reaction. He tells us “everyone” has agitation. It’s a “common” reaction. I look across at the other three patients. Calm, peaceful. Not agitated. The nurses pull the curtains at his request.

I mention that the medical literature I have read indicates that only 5% of the patient population for ECT has such a reaction. He tells me it’s incorrect. (Did I mention I read the actual medical textbooks written for ECT providers? And research from Duke University, where they started this procedure? I may be only a social worker, but I can read medical journals too).

Back to “Casper, if you want this and the excellent outcome it will bring you have to smile and decide you will like it. No more playing sick.”

I am seething, but only inside. What kind of cruel irony is it that you are telling a Parkinson’s patient to SMILE? Casper can’t smile anymore. She has to force her face to comply with messages she thinks about sending to smile. Parkinson’s creates what’s known as the PD Mask. The face loses the connection with the brain to give the command to smile.

I mention that after bad nights she can’t get up, and she’s in a lot of pain.

“We all have pain. We work through it.”

I look at the doc. He is maybe forty years old. Fit, toned, and clearly in excellent health. He does not spend his nights jumping across his bed. He hasn’t soaked his bed in sweat, had dreams that are so real they are still active when awake, and jumped so much he’s fallen off the bed. And he still gets to smile.

Casper thinks it through. I can see she’s done. I am glad she finally has a say in this. We get up to leave, and he tells her he enjoyed working with her. She looks perplexed. And then asks what meds he will be giving her. Now he looks perplexed.

“You have to call your neurologist. I won’t be seeing you again.”

Casper says “But you said you could give meds to me.”

He pats her on the back and says “Good luck.”

It’s a quiet ride home. I can see there are thoughts but Casper isn’t talking. Finally, she says “I think they gave up on me.”

I tell her we will see her neurologist soon. I have already placed the calls to make it happen. She can’t remember who he is. After some memory jogs we get there. Then again…

“They gave up. They didn’t want to try to make it work. It worked one time. Why can’t they do it right?”

Later. “This is hopeless.” I keep her with me. She rides along a few hours. The neurologist’s office calls, cheerful and bright and full of hope. “We have an appointment. We’ll stay late for her. You get her in here and we’ll get things started.” Casper relaxes.

“They are going to get meds?” Yes, they are. Next adventure? And Casper is ready to try it again.