GrandMary and I are getting a little punchy here. At times we feel like we’re running a skilled nursing center: dispensing multiple meds up to three times per day, changing bandages, fitting in exercise, bathing, and healthy meals. Yesterday, we had Oscar sitting on the shower bench washing his underarms—left, right, left, right. I lost count, but those pits were clean—while she soaped up his hair and I scrubbed his legs. Water and soap were splattering everywhere and Oscar was frustrated and on repeat. “I hate this! This is terrible. I’m not happy!” It’d been three days since the last shower and we’d run out of snappy replies.

“It’ll just take two more seconds,” GrandMary kept saying, gently.

I am always less patient. “C’mon O, you stink. You need a shower.” And, “No bending!” every time he reached for the soap.

With water flying, the towel on the floor soaked, and Oscar’s head a mass of white suds we both just started giggling, silently of course. Thankfully O’s eyes were closed, because, yeah, he’d have been mad. And rightly so—he wasn’t comfortable. We weren’t laughing at him, more at the folly of the moment, but he wouldn’t have been able to tell.

As soon as he was out and dried he was happier, of course. “I feel great,” he beamed. “Yeah, that was good. I mean, I didn’t like it, but it was good.”

His shower crankiness wasn’t really about the shower, but about a new wound cleaning regimen Dr. C. was recommending we start. Oscar was mad that he wasn’t consulted. “I keep telling you over and over that I need to be involved. You can’t just keep making decisions behind my back!” he spat at us. He’s right, and not. The problem is that involving Oscar often just fuels his anxiety. And when there’s not really a choice to be made (like this situation) we’re better off not turning it into a huge decision-making process, but just proceeding with little detectable uncertainty and angst on our end. We end up speaking in code a lot of the time, which is hard to squeak by him, or whispering out of earshot.

After the shower we headed to our wound station—a chair in the dining room positioned near a large window so I have enough light to take the daily photo I send to Dr. C. Oscar’s chest tube insertion site still hasn’t closed up and we’ve been in close communication with her about care. Oscar started balking again—he didn’t like the idea that a piece of saline-soaked gauze would be inserted into the wound and left there. “I don’t like the wet, I don’t want something wet on me the whole time. It’s going to feel weird.” He helped by pulling off the tape on the old gauze, but then he was amped up again.

“I hate this! I told you, I want to be a part of things. And you guys are just making decisions and not including me and I don’t like that.” His face crumpled, and he stood up in protest, starting to cry. “I want to discuss other options!”

“We don’t have a choice, O,” I kept telling him. “Dr. C’s the expert here and this is what she wants us to do. It’s going to help this wound heal faster.” He calmed a little upon hearing that, but once the saline gauze was in place it was clear he wasn’t comfortable. “It feels weird, it’s all tingly, I can’t stand this!”

I shepherded him off to the bedroom to take a nap. He lined up the two pillows he sleeps on to provide some cushion, sat on the edge of the bed, laid down on his side and rolled onto his back. Usually he finds this comfortable. But not yesterday. “OW OW OW!” he yelled at me. “It hurts, I feel like I’m back in the hospital with all those tubes and things stuck in me!”

“But you don’t want to end up back in the hospital,” I replied. “Dr C is trusting us to do this right so it can heal.”

“So you’d worry if it didn’t feel like this?” he asked, no longer screaming. His eyes narrowed as he considered this.

“Exactly!” I said. “That stinging is a healing feeling. It’s the saline doing it’s job.”

He nodded then, and started to relax, finally, until I started belting out, “You’ve got that healing feeling, whoah that healing feeling…..” My on-the-fly parody of the Righteous Brother’s song, You’ve Lost that Loving Feeling.

“Mom, stop!” he cried out, and I feared my stress-induced punchiness was way over the line. But then a smile snuck onto his lips, betraying the tiniest bit of amusement.