by G. H. Ephron
If I’d had to give a diagnosis then and there, I’d have said Lewy body dementia. The usual treatment options were palliative at best. I didn’t want to get Annie’s hopes up, but I wondered if Dr. Shands would be willing to evaluate her uncle. Maybe enroll him in their research study and qualify for experimental treatment.
“He needs to be evaluated,” I said. “We probably won’t get a definitive answer, but it may indicate what kind of treatment—”
“It’s treatable?” Annie asked, pouncing on the possibility.
“There are drugs that may lessen the symptoms, plus some experimental treatments that are showing promise.”
Annie dug her thumbnail into the Styrofoam of the cup. “So what are you saying? Diagnosis is iffy and the only treatment is experimental?”
It pained me to admit she was right. Welcome to my world—modern mental health, house of smoke and mirrors.
“Do people with this always end up living like that?” Annie asked.
“You and your mom caught this early. Much earlier than usually happens when someone’s living alone.”
“Maybe if I come over more often…”
“Annie,” I said, leaning across the table and putting my hand on her arm, “we can get the place cleaned up. Get him a geriatric care manager to help day to day. That will buy time. But he needs a thorough evaluation so we know what we’re up against.”
Annie pushed away the coffee. “You think I’m in denial.”
“You’re not the first person to have a hard time coming to terms with something like this.”
“I suppose that should reassure me.”
Denial, anger—both were perfectly normal. “Listen,” I said, “I was in deep denial when my father started showing unmistakable symptoms of Alzheimer’s, and I was an expert on the disease.”
Some of the tension ebbed out of Annie’s face. “I guess I’m not ready to lose him.”
“Let me see about getting him admitted to my unit. We can do some tests, try to figure out what’s going on. Maybe there are some medications that will help. And there is something you can do now. Get him to sign a health-care proxy and give you power of attorney. That way you’ll be able to make the decisions you think he’d make himself.”
“When he’s unable to?” Annie asked, reading between the lines. “It’s that bad?”
Sadly, I couldn’t disagree.
8
“THE TREMORS are somewhat better but he’s still having hallucinations,” Gloria said. Uncle Jack had been with us on the unit for a couple of days. We were discussing his case at morning meeting. “He keeps picking things out of the air and talking to someone named Felicia.”
“That was his dead wife,” I said.
Kwan had Uncle Jack’s file open. “Rapid onset, Parkinsonian symptoms, visual hallucinations…Hmm, what do we have here?” he said, looking at Emily.
“Dementia. Maybe Alzheimer’s. Possibly Lewy body.”
“When do we ever get a definitive diagnosis?” Kwan asked.
“There’s a new test,” Emily said. “They’re doing research on it at University Medical Imaging where I’m a research fellow. Dr. Shands’s whole focus is on Lewy body dementia.”
“James Shands?” Kwan said.
“You know him?” I asked.
Kwan pursed his lips. “By reputation.”
I’d known Kwan long enough to read his expression. He had reservations about the great Dr. Shands.
“If the test isn’t going to change the treatment, why do it?” Kwan continued. “We’ve already got Mr. O’Neill on medication to mitigate the symptoms.”
“There’s a research study that he might qualify for,” Emily said.
“Experimental protocol?” Kwan asked.
“Early results are promising. We’re looking at whether increasing the permeability of cell membranes in the brain may counteract some of the effects of Lewy body dementia. We’re using a cholesterol-lowering drug.”
“Not a whole lot on the risk side,” I said. “They do the tests on a new imaging system. Four point five tesla.”
Kwan’s eyebrows went up a few microns. Now he seemed impressed. “Maybe it would be a good idea. If it works out, a closer connection with them wouldn’t hurt. They provide the funding, we provide the patients. It’s a win-win.”
I caught up with Kwan after the meeting. “So you know Dr. Shands?”
“Sure. He’s the go-to guy on functional magnetic resonance imaging.”
“And…?”
Kwan sat there like the Buddha who knows all and tells squat.
“Listen, if there’s anything off about him I don’t want to be bringing our patients over there. We don’t need a connection like that. There’s plenty of other experts—”
“As an expert he’s in a class by himself. You won’t find anyone who knows more. Groundbreaking papers. Of course, he’s a narcissist.”
So what else was new? Every researcher who did groundbreaking work had to have a healthy dose of narcissism or he’d never survive the skeptics and naysayers.
“And?”
“I’ve heard he’s a rogue. A womanizer.”
Alpha male. Alpha geek. I remembered the argument I’d overheard between Shands and Dr. Estelle Pullaski. That level of anger rarely arose out of professional differences.
“Likes ’em young,” Kwan added.
“He’s into his research assistants?”
“There may have been a few ugly situations in the past that got hushed up.”
My antennae went up. I was loath to swallow a rumor without questioning it first. Not too long ago, one manager’s primary weapons for encouraging attrition at the Pearce were rumor and innuendo. I’d had a good friend, a psychiatrist, whose reputation got shredded by an ugly rumor campaign. When she was killed before she could defend herself, I did it for her.
I must have looked skeptical because Kwan put up his hands. “That’s his reputation. I’m just telling you what I hear.” He cleared his throat and glanced about. No one was within hearing distance. “I have no idea if he and Dr. Ryan are, you know….”
I thought about Shands, that supernova presence of his that lit up a room. Had Emily been as seduced by the man’s charisma as she’d been mesmerized by his intellectual brilliance? And what about Shands? What would he assume about Emily coming in one day wearing a suit jacket with nothing underneath? What about the way she touched him when she talked to him? Shands would probably assume she was coming on to him. It was his due, after all. He’d given her credit on a paper, something Philbrick confessed had taken him three years to achieve. Was that a bribe for future favors, or a reward for services rendered? It was entirely too easy for someone like Shands to take advantage of his position. Junior staff were ambitious, eager to please, and the power equation was stacked against them.
At first I thought Uncle Jack was playing with a piece of string, holding it in both hands, pulling it one way, then the other. Then I realized there was no string.
We’d put him in a sunny corner room and he’d made himself right at home. Magazine and newspaper clippings already littered the chair, the bed, and the bedside table. On the windowsill he’d started a collection of sugar packets. And that wasn’t all. There was a silvery key ring with car keys on it, four Pearce Psychiatric Institute pens, and a pair of ladies’ sunglasses. Apparently he was a magpie who helped himself to shiny things. I slipped the keys into my pocket, intending to bring them to our Lost and Found, and I made a mental note that we’d need to keep an eye on Uncle Jack.
“Good morning, Mr. O’Neill,” I said. My voice distracted him only for a moment. Now he held up the phantom string and examined it. At least the medication Kwan had put him on had calmed the tremors.
“What do you have there?” I asked. “Can I see?”
“At a theater near you,” he said, offering me his hands. “Felicia gorth fribbins.”
Suddenly his eyes opened wide and he reared back as if someone had struck him i
n the face. He let out a holler and his shoulders twitched. Then he stood there wide-eyed and gasping, the breath knocked out of him. There were benign hallucinations with which you could play cat’s cradle, and then there was this other kind that knocked the stuffing out of you.
I called Annie and told her about the troubling hallucinations. “Still, overall, he’s adjusting well. Even seems to like the food. As soon as we get a more definitive diagnosis, we’ll have a better idea about the best treatment. We’re trying to get him scheduled for a functional MRI.”
“You’re going to slide him into one of those contraptions? Won’t that upset him?”
“It might. But hopefully it will give us a diagnosis. We can always sedate him—”
“Sedate him?” Annie sounded horrified.
“Something short-acting. There wouldn’t be any lasting effects.”
There was silence on the other end. Then, “Can I be there, at least.”
“I’ll ask.” Already I was marshaling my arguments for getting around their “no visitors” policy. “How’s it going with the apartment?”
“We’re making progress. Slowly. We’re talking years of accumulation. How did this get so bad without us knowing?”
“You told me your uncle was a little obsessive to begin with. He was always collecting things, right?”
“Sure, but not like this.”
“When you begin to dement, often you try to hang on by focusing all your remaining energy on a single thing that you can still control. Psychologists have a fancy word for it: hypercathexis. Collecting turns into hoarding, and pretty soon you’re reluctant to throw out anything because hey, you never know when you’re going to need it. It’s all about trying to keep your internal world from spiraling out of control.”
Annie gave a weak laugh. “Is he ever going to be upset when he gets home and finds the place cleaned out.”
She wasn’t ready to hear it, but it wasn’t likely that Uncle Jack would be returning home.
There was hardly an empty seat in the waiting room. There’d been a cancellation and Emily had been able to slip Uncle Jack in for a nine o’clock appointment. I’d ridden over in the ambulance with Uncle Jack. Annie had convinced her mother not to postpone her trip to Ireland, and had delivered her to Logan before dawn. Emily had helped me convince Dr. Shands to let me and Annie observe.
Uncle Jack wore new sneakers and creased khaki pants that looked freshly laundered. His face was clean shaven, the skin nearly translucent. Comb marks lined his hair. Now he was poring over an article titled “Golf Mania.” He tore a page from the magazine, then another. Carefully he folded the two and stuffed them into his pants pocket. Now he tore out a discount coupon for eighteen holes at a country club in Myrtle Beach and added that to his stash.
By the time the receptionist came for him, Uncle Jack’s pocket was bulging. She told us they’d be doing a brief physical exam. When Uncle Jack had been prepped, someone would come get us.
Annie stood as Uncle Jack shuffled off. “He’s okay in there alone?”
“They deal with dementia patients all the time. It’s like a hospital,” I said.
Annie looked at the door through which Uncle Jack had disappeared, as if some force were tugging her. With a sigh, she went over to a table of magazines and picked up Time. She sat and riffled through the pages, then set it open on her lap and gazed off into space.
She leaned over and whispered into my ear, “Did you know that an MRI magnet is four times as powerful as the ones they use to lift cars in junkyards? In Rochester a while back, an MRI magnet yanked a .45-caliber gun out of a police officer’s hand. The gun discharged a round that ended up in the wall.”
“You don’t say? I had no idea,” I said, suppressing a smile. It was a relief to find some of the old Annie in there. “I gather you decided not to pack a pistol?”
“Thought I’d err on the side of caution.”
“Wise move.”
When Leonard Philbrick came out to get us, he had on what looked like the same rumpled lab coat. Today the inner office hummed with activity. A man and two women in white coats with plastic name tags clipped to the pockets were working at the counter in the central area. A man with a stethoscope around his neck strode through, carrying a large file folder. A nurse darted down one of the corridors. Phones were ringing, and in a corner the wall lit up as the receptionist used a copier.
Annie left her leather backpack and the folding knife she kept in her pocket at the desk. I emptied my pockets.
Philbrick took us to the control room. Annie looked through the window into the scan room next door where Emily was showing Uncle Jack the machine. He was dressed in a white-and-blue hospital gown and looked even more frail and uncertain.
“Mr. O’Neill,” Emily said, bringing her face near his. Her voice sounded slightly distorted and tinny as it broadcast through the speaker. “We’re going to ask you to get up onto this table”—she put Uncle Jack’s hand on the cushioned platform—“and then we’ll raise the table and slide you in there.” Uncle Jack gazed at the hole in the massive white metal cube.
She continued with a simple explanation of the procedure. “There will be a lot of noise, but that’s perfectly normal.” She showed Uncle Jack a pair of shiny black earphones. She put them on Uncle Jack’s head and adjusted them. Now Uncle Jack looked like an insect with enormous compound eyes on either side of his head.
She helped him get up on the table and lie back, his head pointing into the tube. He lay there, blinking up at the fluorescent light boxes, his head cradled in a foam pillow. The only hint of agitation was the way his hands wavered restlessly at his sides.
Emily overlapped the ends of Velcro straps across his forehead and pressed them in place. Then she took what looked like a plastic birdcage and set it over his head. She picked up a microphone from a side table and spoke into it.
“Can you hear me?” she asked. Uncle Jack jumped at the sound of her voice. “Good. I’ll be asking you to do some things. Let’s try a few.”
She asked Uncle Jack to open and close his eyes. Asked him to say his name. Tap his fingers. It was a simplified version of the protocol she’d run through with Mr. Black, minus the balls to squeeze and without the pictures. Uncle Jack managed to do most of what she asked.
“Now I’m going to slide you into the scanner,” she said. “Then I’ll go into the room next door. Ready?”
She pressed a button and the table began to slide until Uncle Jack’s head was in the center of the tube. His feet in paper slippers stuck out the end toward us.
“God, already I hate this,” Annie whispered to me.
Emily returned to the control room. Philbrick sat at the computer monitor alongside the window overlooking the scan room. He typed something and a dark window came up.
Emily picked up a microphone from alongside the control panel and began speaking into it. “Just relax, Mr. O’Neill. I’m right here. We’re about to begin. When we turn on the machine it’s going to be noisy. Don’t worry, that’s perfectly normal.”
Buzzing noises started and a gray, three-dimensional image took shape in a corner of the computer monitor. Philbrick clicked to enlarge it.
“That’s your Uncle Jack’s brain,” I told Annie.
Annie’s mouth fell open. “Wow.”
I felt an unexpected surge of relief. I hadn’t realized how much it mattered to me that Annie found this awe-inspiring.
Philbrick leaned forward and rubbed his cheek while he stared at the image. I noticed a bruise there, and the remains of blood at the corner of his eye. Looked as if he’d been in a fistfight. He hardly seemed like that kind of guy, but then neither did I. It had been a week since my run-in with Kyle, Emily’s ex. All that remained was a yellowish smudge and a slight tenderness.
Annie put her elbows on the desk and watched intently. Now the machine began thumping.
“What’s that?” Annie asked. Then the image went fuzzy for a moment. “What happened?” she asked,
her voice taut with panic. She stood and pressed her face to the window into the next room.
“He just moved is all,” Philbrick said. “Here it comes.” The brain reappeared.
“You sure he’s okay?” Annie asked.
“It’s absolutely painless,” Philbrick said.
The brain shimmied again.
“Mr. O’Neill, please, try to hold your head still,” Emily said.
This was nothing like the baseline data I’d observed when Mr. Black had had his MRI. I could feel my heart starting to race as I watched the activity increase. There were little explosions of green and yellow, then flashes of orange and red behind the forehead in the frontal system, more at the center of the brain in the limbic system.
“He’s having a panic attack,” I said, rising to my feet and overturning my chair.
“Please, try to hold still,” Emily said into the microphone. Now the image went out of focus again. “Mr. O’Neill!” Emily tried.
Uncle Jack’s feet were flailing. One of the slippers had come off and was floating to the ground. I felt as if I were watching someone being tortured.
“Get him out of there,” Annie said, her voice strident. She reached for a panel of red buttons marked EMERGENCY. “How the hell do you shut this thing off?”
“Don’t touch those!” Philbrick bellowed. Annie backed off. “Christ almighty, before you wreck the system, let me take care of this.”
Above the din of the machinery I could hear Uncle Jack’s weak voice. “Help! Help!”
Philbrick pressed a button marked STOP SCAN and the machine fell silent. The thumping that we now heard was Uncle Jack inside the tube.
Annie and I started to follow Philbrick and Emily into the scan room but he stopped us. “Please, let us take care of this. It won’t help to have the four us crowding around him.”
Annie and I watched through the window. It seemed to take forever for the table to slide out. “I’m not dead,” Uncle Jack said. He was whimpering.
