Look how innocent Mark looks in this morning’s photo. In reality, he has been rough for the past 24 hours. He’s been perseverative, something that can happen with his wildly unpredictable brain.
I noticed it yesterday when we went to Aldi, which he loves doing. He pushed the cart throughout the store, as usual. He unloaded the groceries onto the belt and paid, as he likes to do. Off baseline, though, with my endless observation of him, he simply watched me bag up the groceries rather than helped. Then when he pushed the cart out towards the car, he didn’t seem to remember which way to go. I pointed. He adjusted a bit, but still aimed for the front of the car rather than the lane behind the car. I tried adjusting him, but he ignored me and kept going.
It wasn’t clear to me that the cart would fit between our car and the vehicles on either side. He aimed for the side with a huge SUV. With a young mom in the driver’s seat. I tried to grab the cart to guide it. Mark ignored me and kept going. He started to line it up to go between our car and the SUV. The woman looked confused. I pointed to my head, and Mark’s. “Brain injury!” I mouthed. But that’s not a universal motion, like the sign for choking. Young Mom looked confused. I quickly squeezed between our car and her SUV and grabbed the cart to keep it within the slim margin between. We navigated the gauntlet. Mark stood silently as I unloaded the groceries into our open hatchback. “I’ll take the cart back, and you can rest,” I said. “Yeah yeah,” he said, looking at me, unmoving. “YOU SIT IN THE CAR AND I WILL RETURN THE CART,” I tried again. He got into the car. I raced the cart back to its bay.
So it’s surprising, and not, when last night, Mark tried to get the car keys out of Michael’s hands. “You aren’t allowed to drive, Dad. You don’t have a license and you could have a seizure.” God bless Michael and his endless patience and rationality. I can’t imagine playing this role with your dad, when you are 20 years old.
Mark doesn’t often get like this, in recent months. And when I have to assert, NO YOU CANNOT, I feel like I’m kicking a puppy. I know it’s the right thing to do. It’s not that. It’s that I can imagine how it could feel to be told YOU CANNOT when he must feel like, OF COURSE I CAN.
It would be terrible.
I know, being Mark’s caregiver, that I am in a tiny box that is unimaginable to most. Mark is in an even tinier box. That I cannot imagine. And yet, I must keep him there.
This morning, after I told him he couldn’t take the car out for “a spin around the block,” as he posited, he laid down on the couch to go back to sleep. It was 8:15am. At 7:30am, we had talked about my schedule and us going out to lunch together.
Later, after teaching my first class, I checked in with him about lunch. “So at 12:30,” I reminded him, “I’ll be ready to go out to lunch.” “We’re not doing that,” he said. “Why not?” I asked. “Because you changed the plan,” he said. “How did I change the plan?” I asked. “By saying I couldn’t drive there,” he said.
Nevermind that that’s not actually what he had proposed. I had to go teach another class. “Let’s see how you feel in an hour,” I said.
In an hour, Mark still did not want to go out to lunch. But he had chilled out, after napping and snuggling with Robert. Pandemic puppy for the win. Who I would never kick, also for the record.
I would think anyone who’s dealt with a loved one with a dementia diagnosis can relate to this. The absolute pain of the confusion. Of saying, “No,” to something that to your loved one seems like a reasonable request, a simple pleasure.
To be the agent of denial.
I do not like it.