Slow Dancing with a Stranger (8 page)

His ability to stand slowly improved, and his footing grew more stable, so we ventured out to walk the halls. We circled around three or four times. Then, as we came around once more on the way back to the room, I heard a man screaming profanities. Suddenly, two muscular orderlies rushed into his room. A nurse, injection in hand, came running right behind them. In less than thirty seconds, the corridor was silent again. The eerie quiet upset me more than the outburst. Had they treated Harvey the same way last night?

Without warning, Harvey suddenly left my side and bolted ahead. He was moving quickly, in an erratic weaving pattern. I ran for a wheelchair parked at the far end of the hall and called for help. An orderly responded and together we managed to get Harvey into the wheelchair and back to his room. That episode was just the start of increasingly erratic behavior. Harvey was not the person I had brought in just twenty-four hours earlier. He would never again be the same.

By the time the doctor who had seen us earlier dropped by, it was already midafternoon. “How are you doing, Dr. Gralnick? You're a lucky man. Your wife is a tiger when it comes to you.” I couldn't take my eyes off Harvey, whose only response was garbled and unintelligible.

From the start of Harvey's illness, I had never spoken about Harvey's prognosis in his presence, so I asked to speak with the doctor privately. When we were alone, I told him that Harvey seemed distressed and unable to communicate. “Given Harvey's discipline as a doctor, I had initially hoped that running a few tests in a hospital setting might tap into some long-term memory and perhaps reassure him. But given the day's events, it was clear this had not been the case.” I asked again for permission to stay in Harvey's room overnight to help ease his transition.

“It's not allowed, and there are no special privileges because you are a doctor's wife,” the physician told me. Before I could protest, he added, “It's also for your own protection.” It might take time before the doctors found the right medicine or combination of medicines to help control Harvey's disturbing behavior, he told me. Other than the dementia, Harvey was still fit and strong and could lash out and hurt me. “The best thing you can do is remain calm and let us do our job,” he said.

I had been put off the day before, but now I persisted. I tried to argue that I could be helpful. If I was allowed to come in early in the morning and stay longer at night, I could make sure Harvey didn't get into trouble. It was clear they were short-staffed, and my presence would ease the burden on the nurses. The doctor never relented. I got permission to stay on the floor only during visiting hours.

By the end of the day, with the drug out of his system, Harvey could again say my name. His eyes, though still glassy, seemed to focus when I put something like a meal directly in front of him. But he ate only if I fed or handed him finger food; utensils were too complex to manage. I helped Harvey through dinner. When visiting hours were over, it was hard to say good bye. “Good night, love. When you wake up in the morning, I will be right here,” I promised.

Before I left for home, I talked him through our good bye checklist. I reminded him that I had asked the nurses to leave the light on in his room. I told him that I had left notes on the back of the door and the bathroom mirror with my phone number. I assured him that when he woke up, I would be right there with him. When I left the hospital that night, I wasn't sure how much he understood. Tonight it was not only the numbing cold night air that kept me awake on the forty-five-minute drive home.

By the end of the first week, my presence was an accepted part
of the hospital routine. The nursing staff didn't seem to mind that I arrived with them at 6:30
A
.
M
. and was the last visitor out the door at 8:30
P
.
M
., when visiting hours ended. I tried to enlist the nurses as allies. Many mornings, I arrived with coffee and sweets, a treat for them after the long and difficult night shift. I relieved them of their chores by helping Harvey clean up, dress, and eat chunk-size food that I brought from home. I kept him engaged by walking the floors for exercise, letting them turn their attention to other patients. When the nurses took Harvey's vital signs, I reported back to them how he was tolerating the different dosages of drugs that the doctors were trying. Often I felt that the doctors dismissed not only my observations, but even the nurses' reports. Sometimes the nurses wrote in Harvey's chart that he didn't seem to be responding to a particular drug, but I noticed that the doctors continued to increase the dosage. When there was a serious side effect, they would slowly wean him off the compound and begin another.

As a patient in the locked ward, Harvey was not permitted to leave the floor. Desperate to defuse his anxieties, I took him out to walk the halls. Patient rooms lined the perimeter around the glass-shielded nursing station. At the end of the hall was a large activities room with long tables and rows of chairs pushed up against the walls.

There was a mix of patients. Some suffered from mental illnesses like schizophrenia and bipolar disorder. Others had bulimia or anorexia, depression, or had attempted suicide. Then there were those like Harvey, with memory and behavior disorders in need of a diagnosis.

I soon became a fixture on the floor and often made conversation with family members and some of the patients, many of whom seemed lonely and eager to engage. Without my asking, they watched out for Harvey and volunteered details about how he was managed or, in their opinion, mismanaged by the staff. A young female anorexic with insomnia whispered to me that Harvey roamed the halls all night unsupervised. Almost all the drugs they tested on Harvey had troubling side effects: high fevers, vomiting, unsteady gait, slurred speech. What had started out as a few days in the hospital for observation now stretched into the third week, with no end in sight.

One morning during the third week, I arrived at 6:45
A
.
M
. to
find that Harvey was not in his room. It was empty, and I started to panic. What had happened? I spotted a worn burgundy leather couch, typically located in the lounge area, blocking the entrance to a small room on the other side of the hall. Noises emanating from the room sounded familiar. I peeked in and found Harvey, dazed and pacing back and forth, making a small circuit from the far corner of the bed to the sink, as if he were caged. I called his name, but he did not respond. Moving the heavy barricade just enough to squeeze by, I slipped into the cramped quarters, talking gently and trying to calm him. I held out the breakfast I had brought from home, but he lashed out with his fist. The food landed on the floor, splattering everywhere. I kicked what I could under the bed and threw down a towel so Harvey wouldn't slip, then pulled the nurse's cord for help. No answer.

Harvey now headed straight toward me. There was no room to get out of his way. It was clear that he didn't recognize me. The menacing look in his eyes was frightening. Fearing for my safety, I jumped over the back of the couch onto the cushions, escaped into the hall, and headed for the nursing station. I was told that Harvey had suffered an adverse reaction to a higher dose of the latest medication and was out of control. Short-staffed, the overnight nurse said there was no option but to move him into the barricaded room where they could monitor him at a safe distance.

I felt sick inside and ran to the ladies' room, where I threw up. Splashing cold water on my face, I tried to pull myself together. I went back to the room and stationed myself near the couch so Harvey could hear me. I hoped the sound of my voice might calm him, but he continued to pace. Eventually, exhausted from his all-night exertions, he lay down on the bed and fell asleep.

A few hours later, he awoke. He seemed calmer but still out of reach. He needed to be cleaned up. I guided Harvey down the hall to the double-stall handicapped shower that accommodated wheelchairs, hoping that the wide berth would give me room to maneuver if I needed to get out of his way. I had been helping him with his personal care for years using a combination of strategies. I tried to give him as much autonomy as possible, even if the act of bathing and dressing took four times longer than normal to complete. I never raised my voice, pretending to be calm even when panicked. However, ever since Harvey had been in the hospital, things were different. Harvey reacted violently to all personal assistance with intimate care and toileting.

I reached with the bath sponge to wash Harvey's groin area and suddenly felt his left fist slam into my face. Blood gushed from my mouth as I backed away, realizing that the force of the blow had smashed my front teeth. I began to cry from the shock and pain.

Harvey seemed confused by the sound of crying, but he never unclenched his fist. I pressed the call button, and the nurse and an orderly came running. Between the two of them, they managed to get control of Harvey. They dried him off and dressed him while I iced my mouth. Each day since Harvey fell ill, I felt that I was slowly losing pieces of my husband, but this episode was a turning point. All the strategies that had once calmed him were failing. He didn't seem to respond either to medicine or to my familiar touch. All I saw now was the dark side of his mind. Harvey was locked away not only in the hospital but inside this strange insidious illness. For the first time, he seemed completely out of reach.

The weeks in the hospital blurred together. The relentless pacing
continued at all hours, with Harvey stopping only to sleep. I fed him while he paced an empty activities room. When he passed by, I reached out with food or drink, hoping to distract him or slow him down. It never did. Even bumping into furniture did not seem to slow him down. My only recourse, another made-in-the-moment solution, was to outfit him with the style of shin guards used by lacrosse players.

Sometimes when I arrived, Harvey was turning a corner or approaching down a long corridor. He walked like a man on a mission, but his eyes were empty and dull. It took four orderlies to hold him down for a simple blood draw. Efforts to help him with mundane activities of living turned even more confrontational. His prognosis worsened. No one had any answers.

One morning while showering him, I noticed that the lower part of his left leg was swollen and inflamed. I reported my observations, first to the nurse and then to the doctor, who ignored me until they ran some tests. Harvey had the beginning of a serious deep vein thrombosis—a blood clot.

The doctor immediately prescribed the blood-thinning agent Coumadin and told me Harvey would have to go on immediate bed rest. Harvey could not stop pacing and he was oblivious to explanations of why he needed to lie down. Four strong male orderlies entered his room. Two held him down while the other two bound his hands and feet with thick leather restraint cuffs. Harvey writhed in pain and cursed angrily. Sweat spewed from every pore of his tormented face. A nurse shot him with a strong sedative, but it did not immediately work. His body contorted and writhed with an adrenaline surge. The doctor ordered me to leave the room, but I refused.

“Let my husband loose,” I yelled. “If walking is his way out of this nightmare, then let him walk. He would not consider this living anyway.” Harvey was now drenched in sweat and exhausted from his struggles. I felt exhausted too—from Harvey's suffering and the fruitless search for answers.

This sickening scene haunted me and colored every decision I would ever make about his care. Never again would Harvey be left in a situation where he might be restrained against his will or overmedicated.

Right now I wanted to go home and take Harvey with me.

With this latest incident, the doctors were running out of options
. They had already run through most of the antipsychotic and psychotropic drugs in their arsenal. None of the drugs seemed to make a difference. Harvey retreated further. He could no longer participate in the battery of cognitive evaluations that the doctors once gave him. After over two and a half months in the hospital, it was time to release him with their best attempt at a formal diagnosis.

A meeting was called for Friday. Jason and I attended. Harvey was in the room too but did not seem to understand anything the doctors and social workers said as they gave their reports. Harvey's incessant pacing continued throughout the conversation.

“I want you to know we have done our best with a very challenging case,” the doctor said. He had trouble looking directly at me. “Your husband has presented atypically all along.”

Harvey's file lay open on the table, but my eyes were too filled with tears to read the words. The doctor continued, reading aloud from his notes. “Our conclusive findings are that Dr. Harvey Gralnick, age fifty-eight, suffers from early-onset Alzheimer's disease with a behavior disorder.”

Finally a diagnosis, even if they seemed to have reached the conclusion by ruling out every other possibility. Before I had a chance to react, Harvey, still pacing around the room, passed close to me and patted me on the head. It was as if he knew something was very wrong and wanted to comfort me, but had no idea what was happening.

After all this time, hearing the words
Alzheimer's disease
spoken out loud did not shock me. But the doctor's next words did. “It is our view,” the doctor concluded, “that your husband is too dangerous to go home.” Jason wrapped his arm around me, trying to soften the force of the doctor's edict.

E
ach and every one in the room seemed to agree that Harvey could not go home. But no one knew what to do with him.

The social worker had made a list of facilities in our area that might take him. Copper Ridge, an institution affiliated with Hopkins and known for handling difficult cases like Harvey's, was full. In between hours at the hospital with Harvey, I had visited some of the others. Each visit left me depressed about the options. The main entrance and visitor spaces were decorated to mimic “home sweet home” and the nostalgia of a bygone era, replete with a mixture of cheap chintz, wicker, fake plants, and plastic furniture covers. There was also no pretense about the barren and basic living quarters that lined the communal areas. But the immediate distraction was the sickly smell that greeted me at the entrance. The signal it gave off was a warning flag of neglect. The sweet faux fragrance permeated everything, but could not mask the stench of urine or the odor of unbathed patients parked in wheelchairs along the corridors. Before me were the most vulnerable of patients: if neglected they did not remember and if abused they forgot. I never got used to it.