cognitive bias called the valence effect, or optimism bias. It’s also known as wishful thinking. In the evenings and at night, Mom often hallucinated. When I called in the mornings, she would describe her hallucinations to me. It’s hard to pretend everything is okay when your mom describes a midnight visit from a long-dead dentist.
I try now to deconstruct those experiences with my mother. I thought of myself as levelheaded at the time, but in retrospect I wonder. Dementia plays you like a seesaw, only the fulcrum refuses to stay put. As adult “children,” we struggle with how to make decisions for the parents who once made decisions for us. We often depend on physicians but aren’t certain who to trust because of the conflicting information and advice we’re given. The flip side of wishful thinking is to err on the side of caution, which unfortunately means being hamstrung by guilt and doing too much of everything, whether it’s indicated or not. Who wants that kind of medical care?
~
The bedraggled woman grabbed my hand and pulled me into the room where an old man lay on a hospital bed. His eyes were closed; his mouth was open. We call this the “O” sign. Commonly seen en route to the “Q” sign.
“My father’s miserable.” She gestured toward him, still grasping my hand in hers. “I hope you can help him.”
“What seems to be the problem?” Looking down at our joined hands, I felt the moist scratch of her freshly bitten cuticles. I used to bite my cuticles, too. Working one week in a hospital cured me forever. “Hello, sir,” I said to the patient while disengaging from the daughter.
“His name is Nathaniel,” she spoke low and directly into my ear. “Nathaniel Corpisi. You’ve probably heard of him.”
“Hunh,” I said.
“He can’t urinate.”
“Okay. Let me go and grab his chart. I’ll be right back.”
“But Doctor,” her jaw clenched tight, “you are going to do something, aren’t you?” She grabbed me again, both hands on my forearm, twisting. The patchouli, at close range, was potent—way more than four molecules. “You are going to help my daddy! He is a very famous conductor, you know. He’s conducted some of the finest symphony orchestras in the world, traveled everywhere. We spent holidays in Russia, Vienna, London, and he was the visiting conductor for an entire season in Paris. I can’t stand to see him suffer!”
~
Early in the summer of 2009, I contacted a man named Robert who had recently started a caregiver agency. My sister Bonnie and I met with him in the lobby of the retirement community where Mom lived.
“Perhaps you could ask your mother to train someone to work with the elderly,” Robert suggested as a way to gently deceive Mom into allowing someone to help her. “I ran into the same problem with my mom. She didn’t want anyone in her home, even though she clearly needed help.”
We took Robert’s advice, slowly introducing a young caregiver into our mother’s life. Mom wanted none of it. Over a month and with a lot of verbal maneuvering, she gradually, begrudgingly and without her usual grace, came to accept the intruder’s presence in her home. We started with four hours a day, five days a week. She fired the woman six times. And then one night in August of 2009, Mom fell out of bed and broke her arm.
The nurse where Mom lived called Bonnie first, and called the ambulance second. I arrived at the local hospital when they had been in the emergency room for an hour. Dr. Helms, Mom’s geriatrician, had decided to admit her because the pain medication made her more confused and ambulation would be an issue. She had broken her proximal humerus, just below the shoulder, which meant she could not push herself out of a chair. Luckily, she didn’t require surgery.
~
I moved to the far side of the Nathaniel’s bed and smiled down at him. It was an automatic smile, a middle-of-the-night, neural reflex smile, disconnected from the muscles of empathy. The conductor did not respond.
I felt his belly, a massively distended bladder, and got a good whiff. Dueling molecules. I turned to the daughter.
“He’ll probably need a catheter placed.”
“Won’t that be painful?” Her eyelid twitched rhythmically.
“He’ll feel much better once his bladder’s emptied,” I said more gently. I made a conscious effort to slow down, to interrupt the momentum that carried me through these call nights and safeguarded precious sleep. “I’ll be right back." I also needed to finish the tuna sandwich before my stomach ate itself.
“But wait!” She moved to the bedside. “Let me show you something!”
She yanked her dad’s blanket down, pulled back his hospital gown. Then, reaching into his crotch, she grabbed his shriveled penis and pulled it straight up, like a fisherman showing off a prize catch.
“You see?” She pointed to the skinny, elongated wiener stretched taut in her hand. I nodded. “I think he’s got a dorsal vein thrombosis!” she said, eyes filling. “Wouldn’t that explain it? His symptoms? I think that’s what it is! A dorsal vein thrombosis. I’ve read about it. See how his penis is purple? See how that purple thing goes up and down there?"
I nodded. I’d never heard of a dorsal vein thrombosis. Even with his dick in the air, the old man didn’t flinch. I stood bobbing my head like a dog on a dashboard.
I felt tired, old and young, brittle and limp. Not cut out for this line of work. The smells. The sadness. I didn’t have a mom or a dad or any relatives who were doctors; I didn’t inherit the trade secrets. I dropped into the chair behind me, and then remembered the tuna.
I stood and felt for my back pocket. Tuna salad juice had seeped through my pants and underwear.
“Why don’t you go ahead and put that down now,” I heard myself say, distantly, the words slow and elongated inside my ears. I gave my head a hard shake and waved vaguely at the old man’s baton. “I’m going to call the urology resident, ‘cause, uh, he has more experience than I do with this sort of thing.” A stream of tuna juice crept slowly down my leg until it reached the top of my right knee sock.
~
Mom, Bonnie and I waited hours in the ER before we were taken to Mom’s hospital room. They had assigned her to a general medicine/oncology floor. Because of her age and dementia, she was given a room near the nursing station. Bonnie and I had warned the nursing staff that she might wander, was at high risk for falling, and was likely to become increasingly confused by the unfamiliar environment. A number of nurses and aides came and went, trying to get her settled as the afternoon shift change approached.
I asked a nurse if we could bring up the guardrails on the bed so that Mom would not fall out.
“No, we don’t elevate guardrails on beds anymore. That’s considered a violation of patients’ rights. We have an alarm system that we put in place if you think she is likely to get out of bed.”
“What kind of alarm system?” I asked.
“There’s a sensor on the bed,” the woman pointed to a pad under the sheet. “We just hook that up. And then we place a pad on the floor beside the bed. We’ll push the bed itself next to the wall so
