Hope for a Cool Pillow. Margaret Overton

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 that she can’t get out that way. The pad senses when she moves off of the mattress, and the pad on the floor has a sensing system also. It’s illegal to ‘confine’ patients now.”

      I tried to take this in. Make sense of it. “So basically Mom is free to fall out of bed, get injured, and then the alarm will sound. But she would be illegally confined if we put up the side rails to prevent her from falling out in the first place. She has the right to be harmed, but not be confined,” I said.

      There is no way that one system fits all patients, neither in concept nor in implementation. To protect some, we harm others. The rights of patients, as defined by politicians, were a rabbit hole.

      “Well, no... the alarm sounds when she starts to leave the bed and someone at the nurses’ station hears the alarm and comes into the room,” the nurse assured me.

      Maybe I look stupid. I don’t think I look stupid, but I’m often underestimated. I think it’s the blond hair. But I’m much smarter than I look. And I’d spent decades in hospitals listening to alarms go unattended at empty nursing stations. Hospitals—nationwide—have staffing issues. Let’s not pretend here. I don’t know a single person who has ever worked in a hospital who has not had the experience of listening to alarms and call buttons ring and ring and ring. So I knew exactly what this whole scenario meant for my mother. We had a barn door and horse situation. Mom was already disoriented. Hell, I was disoriented! Add some pain medicine and she’d be hallucinating in no time. I closed my eyes and shook my head.

      “It’s against the law to confine someone.” I heard stridency in her let-me-tell-you-the-rules voice, the certainty that creeps because if something is illegal, someone somewhere must have given it some thought, right? Instead of what really happens, instead of the massive bureaucratic compromises that actually occur in public policy everywhere particularly as applied to health care. That’s how our system works. Never assume common sense has been applied at any step along the way. Ever.

      “But it’s not against the law to prevent them from falling out of bed,” I said. I wasn’t going to point out the obvious: that was how she’d broken her arm in the first place. And now we had a state law designed to protect patients that effectively accomplished the opposite. Doesn’t that define the law of unintended consequences?

      “We’ll keep a close eye on her,” the nurse told me.

      Right. I knew how that would go. Bonnie or I would need to be there twenty-four hours a day. Or we would have to hire someone. The good news was that Mom’s arm hurt enough that she wouldn’t use it to try to move around too much right at this moment.

      “Can I go through her medications with you? I want to make certain that I have all the orders from Dr. Helms.”

      I sat down and gave her the list of medications, allergies, food preferences, and then I told her to make certain the chart shows that she is Do Not Resuscitate.

      The nurse gave me a cold look. “Are you the power of attorney?”

      “Yes, I am,” I said mildly.

      “And I suppose you have the paperwork with you? Is it something you carry in your purse just in case?”