At this point, my blog posts are back-logged by about a week. So, the issues that I talk about in this post were true of Dad a week ago. Mercifully, it seems that they’ve abated a bit. I’m hesitant to get too excited about perceived improvements because time has shown us that progress in Dad’s recovery will not always be linear or constant or irreversible. But. Hopefully, HOPEFULLY, we are through the worst of this part of his recovery.
Dad is in some sort of delirium in which he gets stuck on a question or desire. Usually a desire to leave. I don’t blame ya, big guy, but your feeding tube isn’t wireless and your legs don’t work. This sort of thing is apparently common with head trauma patients. It’s worst in the afternoon and evening and is thus described as ‘sundowning’ or ‘sundowner’s syndrome’. Here is what dad fixates on:
-‘getting a load out to the car’
-clearing all of our belongings from the hospital room
-calling mom (if she’s not currently in the room)
-why mom won’t let him leave (if she’s currently in the room)
-speaking to the person who can authorize him to leave
-making sure Mom has ordered food from Dametra (a Mediterranean restaurant in town)
-getting dinner for himself (often a salad – which he would not be able to chew or swallow. One time, mom brought him a sprig of lavender that a neighbor had given as a gift and he tried to eat it.)
He gets this dazed look in his eye in the afternoon that is slightly different from the dazed look in his eye in the mornings. Even though he is pretty much perpetually confused, mornings are so much better. He is not making new memories well, but at the very least he is calm, docile. In the evenings he is a nightmare. In that way, the cycle is cruel. In the morning we are encouraged — near ecstatic with his physical (and at times mental) progress. Then we are absolutely slapped down in the evening — like a lazy ping pong volley — by the arrival of a woozy, fixated maniac. Mom and I go home at the end of each day dead-eyed and holding each other.
We both have to dissociate to some degree. This is not our father/husband (it is), this is not our life (it is), this will get better (hopefully it will get better).
I sit through 20 minutes of the loop and I’m ready to punch a hole in my own head. The attendants and nurses (and Mom) have to deal with it for hours on end. It is nearly unimaginable and yet we are face to face with it on a constant basis.
It comes on quickly and unexpectedly. We’ll be chatting — slowly and windingly but in a generally cohesive fashion — then he’ll fall asleep (he sleeps for a significant portion of each day) and wake up a different person. Or, as has been happening recently, he’ll shift mid-conversation. His fixations no longer harmless but panicked and obsessive.
My last day in California, Mom and I walked into Dad’s room after getting dinner to see Dad writhing on his bed — two nurses, an attendant, and his friend Pete standing above him, trying to wrap a velcro vest around his torso so that he couldn’t pull out his PEG tube (the new feeding tube that goes directly into his stomach). “Call security, I’m being restrained against my will,” Dad wheezed. Mom and I rushed in and tried to console him. He’d been combative and resistant before but this was a new level.
Mom and I had spoken to a palliative care nurse earlier that week in an attempt to determine strategies for dealing with Dad’s mania. We weren’t supposed to contradict him but instead were supposed to “yes, and” his statements and questions (she literally said “yes, and” — go improv) and give him the sense that we were all working toward the same goal. The first time Mom tried this tactic, Dad said to her, “You are a seriously confused person.” We struggled to find ways to “yes, and” his insanity:
Dad: Tell mom to pull the car around and we’ll load up all the stuff.
Andrew: Yes…and that’s not going to happen.
Dad: Can I have some peanuts?
Mom: Yes, and you can’t swallow without aspirating food into your lungs, so…no.
As dad railed about the persecution he was undergoing, I leaned in, looked him in his roving eyes and stroked his hair (a default for me throughout this whole process that seemed to have a 60% success rate (astronomical compared to anything else) in calming him down) and told him that I knew he felt persecuted but that these people were here to help him get better. Dad pointed at the Liberian attendant, Saydou, who had been with him on his first night out of the ICU and had saved him from hurting himself on likely innumerable occasions, and said “Not him”. He then turned to Pete, his close friend of 30 years, “Not him”. Mom apologized to the nurse, who — clearly supremely bothered — said, “don’t worry, it doesn’t bother me”. I kept my face close to dad’s and tried to maintain eye contact as he squirmed. He narrowed his eyes at me and whispered, “Is there a clear path to the door?”
“What?” I sputtered, unsure of what he was getting at.
He repeated the question and it dawned on me. I was to be his escape accomplice. I almost laughed. It was a conspiratorial, almost intimate moment amidst an expanse of nearly absolute horror.