Slow Dancing with a Stranger (7 page)

As the months wore on, things got worse. Whatever mind-ravaging
illness he had, it now turned him unpredictably violent. I was instructed by doctors to be cautious and call 911 if he got too violent. Harvey was six foot two and 185 pounds; I was fearful all the time.

The biggest problem was that it was almost impossible to anticipate an outburst. He often came up to me from behind, catching me unaware as I cooked dinner or was doing some household chore. I never knew if he was going to try to hug me or choke me. When I noticed that he seemed agitated, I tried to keep a safe distance. I would quietly leave the room and wait a few moments, then walk back in with a “Hi love, anything you need?” or “You asked me to find your keys and here they are,” hoping that his anger would have subsided or he would have forgotten what was upsetting him. In a fit of desperation, I installed oversized concave mirrors on the walls between the kitchen and family room, our bedroom, bathroom, and adjoining home office. The mirrors were designed to let me see around blind corners, allowing me to monitor him from another room. If he seemed angry or agitated, I had a few moments to decide whether to confront him.

This was the bleakest period yet. I felt trapped in my own home. Then my world opened up a bit with the birth of my first grandchild, a precious baby girl named Hope. She was doll-like, less than six pounds with perfect little features. I watched Jason through the glass window, hovering over her in intensive care. It was a disquieting scene because it reminded me how helpless and how dependent we are on doctors for answers. All the while, Harvey was regressing. Even though I have a photo of the two of us holding Hope in the hospital room, Harvey never knew Hope or any of his five grandchildren. I quickly realized it was too difficult to take Harvey with me when I wanted to see Hope, Eli, and Benjamin. I paid a nurse to stay extra hours while I drove to my son's house to help care for and play with my grandchildren. It lifted my spirits to see how each of them responded to me as their “Nana.” The unconditional love and energy I poured into them came back in very direct and honest ways. They were my antidepressant of choice; the only joy in my life, filling me with hope where there was none.

At home with Harvey, I worked harder and harder, but the person I loved was disappearing bit by bit mentally and physically right before my eyes.

At our visit to Hopkins, Dr. Rabins had warned me that over time, as Harvey's symptoms got worse, the efficacy of the medication he had prescribed would likely diminish. At some point, the dosage levels might need to be adjusted. It didn't take long before this happened, but I kept quietly trying to manage the situation alone through phone consults. The doctor had already increased the antidepressant when I began having trouble coaxing Harvey to get up in the morning. Even with the increased dose, I often had to wake him by saying, “Dr. Gralnick, your patients are waiting. They need you.” Though that seems cruel, it was truly the only way to get his cooperation. By the time he was dressed, he had already forgotten the ruse.

I frantically looked for options to tame his symptoms. I played New Age music at night and used aromatherapy; I pumped up his favorite rock 'n' roll from the 1970s so loud he could hear it anywhere in the house. Nothing seemed to help. There were also signs of physical deterioration. I noticed that Harvey had difficulty negotiating the steps up to the second-floor bedroom. He was fearful and timid, sometimes taking nearly fifteen minutes to mount a flight of stairs. Was it a depth perception issue? Would a new prescription for eyeglasses help? I took him to see the doctor, but the eye exam was inconclusive.

Time weighed heavily for both of us. I checked off each month like a scorecard and test of my own resilience. Another two years passed.

It was clear that Harvey was slowly and progressively getting worse. If anything, his anxieties seemed more pronounced despite the medications. He shadowed me around the house, refusing to leave my side. Sweating profusely, he continuously paced the family room or kitchen. It got harder to stay out of his way. I tried to come up with strategies to protect myself but usually had no time to prepare. Harvey's anger came from someplace out of my reach. It was like a sudden summer storm, his face quickly turning menacing. Often he grabbed my wrist in a crushing grip. Unable to pull free and fearing he might break my arm, I would deliberately move closer to him. I kept my head and chin down so he couldn't get at my throat with his other hand. Then I would hug him with my free arm and say as calmly as the rising fear would allow, “You are a great doctor. You help people, not hurt them. I know you are frustrated, but I am the one who helps you.” I kept on talking until something in my conversation or tone distracted him enough to make him loosen his grip.

Other times, if he grabbed both my wrists, effectively pinning me in place, I would break down in tears, hoping to bewilder or confuse him enough that he would let me go and walk out of the room. But I realized we could not go on like this; if the situation continued or deteriorated even further, I could end up getting seriously hurt.

I spoke again with Dr. Rabins who felt it was time for another round of testing. He recommended that Harvey be brought to the hospital and placed under observation to adjust his medication and look for a better diagnosis than dementia. I was reluctant, knowing that Harvey felt safe at home and unsure how he would behave in a strange environment. But at this point, I felt I had no choice. Things were already bad, and there was nothing I could do to comfort him. Harvey's latest symptoms were adding up to a disturbing prognosis. I started to make the necessary arrangements.

I was desperate for a formal diagnosis even as Harvey was oblivious.

I will never forget the morning we checked into Johns Hopkins
Hospital on Meyer 6, a lockdown floor reserved for patients with complicated neuropsychological conditions that cannot be managed elsewhere. As we prepared for what was expected to be a short hospital visit, Harvey was more anxious than normal. I dressed him like a gentleman right down to his best cologne, so the nurses would treat him with respect. Even if they didn't know who he was, they would be able to tell that he was someone of stature, even if he now had trouble getting dressed and kept repeating himself.

Hospital check-in wasn't until 12:30
P
.
M
., so we found seats in the cafeteria, but neither of us could eat. We walked around the outdoor garden before going upstairs. Harvey was very quiet and held my hand like a child. I kept talking, reassuring him that we were going to see if we could adjust his medicines so he would feel better.

“Then can I go back to work?” he asked. Even after everything that had happened, Harvey was fixated on recapturing the life he once had. I would have done anything to help him get it back.

“Of course, love, that's why we're here. The doctors will run some tests and soon things will be just the way they were,” I told him.

My reassuring words contradicted the sight that greeted us when the elevator door opened. We stepped into a small, beige chamber with a heavy locked metal door and reinforced wired glass windows. The nurses' voices sounded disembodied as they spoke to us through an intercom and buzzed us in. I kept telling myself that Harvey was scheduled for only three to four days of testing and medication adjustment. If it helped him, a few days in this place was worth it.

We were led to a drab double room just down the hall with sad beige walls and a bathroom devoid of sharp instruments to prevent the patients from wounding themselves. I wasn't sure how Harvey would adjust to a stranger in the room, but there were no private singles available. The nurse assured me that no one was scheduled in, so he would be alone.

Harvey was tired from being up so much of the night before, so he lay down on the bed as I quickly unpacked. I had brought along an old radio to keep him company, since Harvey couldn't work a CD player anymore, and turned it to a channel that played his favorite classical music. If he woke up in the middle of the night and was disoriented, I hoped he would hear the music and relate it to the comfort of home.

Just then, a senior resident entered the room and apologized for not shaking my hand. “Spreads germs, you know. Our mission here is to make certain the patients' best interests come first.”

The doctor then turned to Harvey, who sat docilely at the edge of the bed. “You've come to the right place,” he told Harvey. “No one can figure out what is wrong with you, Dr. Gralnick.”

“That's because nothing is wrong with me and I just want to get back to work. Let's get this over quick,” retorted Harvey.

Nothing in this hospital felt familiar except that sudden flash of Harvey's flickering personality. For a brief moment, he almost sounded like his old self. I wondered if I should take him home. The only thing that stopped me was the realization that, even if I did, it would only be a matter of time before we had to return.

I
t was 6:00
A
.
M
. the next day. I had promised Harvey that I would be at the hospital when he woke up, even if it was unlikely he would remember.

There was no one at the nursing station when I arrived, and the cleaning crew paid no attention when, against rules, I slipped into Harvey's room. There he was, sitting slumped on the edge of the bed staring strangely past me. His eyes were glazed. His words came out garbled and slurred. It was clear to me that he had been drugged.

What had happened in those twelve hours when I wasn't by his side?

What trouble had he gotten into? Had he assaulted someone?

Why hadn't they called me?

My mind raced with questions. I felt panic and guilt rising that I had left him at the hospital. “Love, do you know who I am?” I asked. Hoping to wake him from his stupor, I held out a cup of his favorite espresso roast coffee I had brought from home.

Nothing. He mumbled but said nothing intelligible. I took his face in my hands and looked directly into eyes that appeared not to see me. “I'm Meryl. I'm your wife, and you are safe. Can you say, ‘Meryl'?” Again, only garbled and disconnected words came back to me. In the admission meeting, I had requested that I be allowed to stay overnight to ease Harvey's transition to a place away from home. The doctor had refused, saying it was against rules and there were no exceptions.

I helped Harvey back into bed, and then went searching for answers. The attending physician had just left the floor and the head nurse was in conference, so I stationed myself in front of the nursing station, refusing to move. I demanded to see Harvey's chart but was told it was under review and not available. Finally, a nurse stepped out of the morning rounds meeting to deal with me.

“I brought an anxious man into this world-class hospital to be evaluated, and overnight you've turned him into a zombie,” I told the nurse. “What happened? I want to see my husband's chart immediately so I can report back to his neurologist and primary care physician.” The nurse promised to get a doctor to speak with me after the morning meeting. I left the door to Harvey's room ajar so I could see if he got out of bed and still be front and center when the meeting adjourned. This time, I wasn't going anywhere.

“Haldol—it's an old-line antipsychotic we regularly use to
manage aggressive behaviors in dementia patients in case they act up. It was given by the night nurse as a precaution,” explained the doctor.

The words “in case he acted up” screamed in my head. “Was my husband's behavior in any way aggressive toward the nurse? Did she feel threatened?” I asked suspiciously. Harvey had been given anti-anxiety medicine before to take the edge off his behavior but nothing this powerful, nothing with this kind of adverse reaction.

The doctor took his time reviewing the chart before he answered. “The night nurse must have noticed on the admission form that Dr. Gralnick had a history of management issues and ordered a dose of Haldol every four hours as a pro re nata. He is due for another dose soon.”

“Have you seen what it has done to my husband?” I said, struggling to get my emotions under control. “He can't speak intelligibly, stand up straight, or walk without listing to one side. Please check him. I am worried that something has gone terribly wrong.”

We went together to Harvey's room. He had not moved from
the fetal position I had left him in. The doctor tried to wake him, but Harvey did not respond.

The doctor did not seem overly concerned. “He's most likely just sleeping it off,” he told me. He agreed to stop prescribing the Haldol. But he told me to expect that Harvey would need to stay longer than the few days I originally expected. They wanted to try another antipsychotic, called Risperdal, to help regulate Harvey's moods. “You deserve a diagnosis,” the doctor told me. Then he left the room to tend to other patients. Harvey and I were alone again.

Harvey was still sleeping, so I went to the family waiting room to call his doctor, whose office was just one floor above us in the hospital. What I learned next shocked me. His neurologist, someone I knew and trusted, was not directly overseeing Harvey's case. Once we were admitted to the locked ward, the senior attending doctors were in charge.

“What about the Haldol?” I asked. “He was treated like a wild man without provocation.” The doctor assured me that he would put in a courtesy call and monitor Harvey's case but that he couldn't do more.

When I got back to Harvey's room, Harvey was awake and sitting on the edge of the bed. He still seemed dazed. His look was unknowing as he gazed into the distance. It had been just twelve hours, but Harvey no longer recognized me.

I spent the rest of the day trying to get Harvey to acknowledge my presence. I assured him that he would be home soon. I helped him shower and dress, hoping the familiarity of routine might trigger some recognition. I plied him with liquids, hoping it would help flush out the noxious medicine.