Slow Dancing with a Stranger (9 page)

Almost all these assisted living and total care facilities were designed and managed for the convenience of the staff rather than the patients. If the patient didn't eat quickly enough or became in any way belligerent or difficult to feed, solid food was removed and quickly replaced with a liquid protein drink. Geri chairs were used as restraints (that's now against state laws) and antipsychotics were given at the smallest sign of misbehavior. Doors to the outside gardens were typically locked. Most places were understaffed and they couldn't afford residents wandering off. Someone like Harvey, who could not stop walking, had nowhere to go. At all the places I visited, the 1:7 nursing aide-to-patient staffing ratios met the state requirement, but I was appalled. I knew the endless hours I spent focused on my husband's needs, and there was no institutional equivalent.

There was no pretending that Harvey fit the profile of the older, frail residents boarded at most facilities. Not only did he have a challenging dementia diagnosis, but Harvey was trailed by a medical chart that detailed his every transgression. One agreeable group home, run by a psychiatrist and his wife, cost upward of $100,000 a year. Even at that premium charge, we were rejected and candidly warned placement would be difficult. At several midlevel facilities that only make money if the beds are full, I had to promise to pay for private nursing support to bolster the staff, which more than doubled the monthly charge. Even then, most of the management didn't think they could handle him. I was running out of options.

In that final meeting at Hopkins with the team assigned to our case, the doctor in charge admitted he was uncertain of Harvey's prognosis. “Most early-onset patients don't last too long,” he told us. “The trajectory of their dementia is steep, not prolonged.”

I already knew that drugs to treat dementia symptoms were not a long-term solution. It was all doctors had right now and we had run through all of them. However there was one point about which he never wavered: I was not to manage Harvey's care alone anymore.

“You have no idea what you are up against,” the doctor warned me. “It's dangerous. The care is intense, and you'll just burn out.”

Then it was the nurse's turn to manage the details. “Your husband will be discharged in two days. He will be sedated and taken by ambulance to whichever facility will accept him,” she said. She handed me a copy of the discharge papers and told me to pick up Harvey's medications at the hospital pharmacy before 5:00
P
.
M
. After two and a half months in the hospital, this was it.

Now I had forty-eight hours to relocate my husband from the locked ward of Meyer 6 to another secure facility. I asked them why Harvey needed to be sedated. “Those are the rules,” the doctor replied. But I was weary of their rules designed by lawyers anxious about the hospital's liability and at my uninsured, out-of-pocket expense. I might not be able to take him home, but on this issue at least, things were going to be done my way. “There will be no ambulance and no extra sedation because I am the one who will be left to manage the side effects,” I told the doctor. “I will take my chances with Harvey.”

With no safety net once we left the hospital, I began calling the
very same nursing care facilities I had previously rejected. I set up emergency meetings with three located within a ten-mile radius of home to more easily monitor Harvey's care. There was an opening at Kensington Park, less than five minutes from home. A suite had just been vacated by a couple, so it was larger than the regular rooms. It was located on the turreted corner of the third-floor dementia unit at double the standard rate. I knew that I needed room for Harvey to roam, and this was off the main floor, which should minimize the potential of him getting into trouble or bothering other residents. I asked them to hold the space; I would be there in less than two hours to sign the papers. I kept the appointments with the other places in case we were rejected.

On the way to Kensington Park, I called Olga to see if she would be willing to come in as a private-duty nurse. I explained the situation: Harvey was no longer the patient she knew. In the months since she had seen him, he had further deteriorated. I was going to need as many private-duty hours as she could give me. I also asked her to recruit a coworker that she thought could manage Harvey. The nursing staff at Kensington Park would be there to double team with care and for backup in an emergency. I would help out too, covering the night shift. But would they even accept Harvey once they saw his discharge papers?

Kensington Park's entrance was framed by white rocking chairs
on a porch that ran the entire length of the building, but when I went inside, the familiar repulsive odor greeted me. Pushing past my aversion, I followed the posted signs to the manager's office. Fortunately, the woman who had earlier rejected us was no longer in charge. I cut short the typical admission questions and conceded that Harvey was a difficult patient. I was there to make a deal. I told the manager that I had already hired around-the-clock private-duty nurses and that I would take the double suite to limit my husband's excursions on the main floor. All meals would be managed in his room. He would be permitted on and off the floor only under the strict supervision of his private-duty nurses. Otherwise he was confined to his living quarters with no social interaction whatsoever with patients on the floor. Even with these restrictions, Harvey was admitted on a trial basis. I signed the papers. The smell trailed me out the door.

At home, I ransacked rooms, looking for furniture to bring to
the Kensington Park suite later that evening. I packed photos to hang on the walls in the hopes that they might remind Harvey of happier times. I made a mental note to run through escape drills when the nurses and I were together with Harvey. We could not count on the facility's staff arriving in time if he suddenly turned on us. We needed to figure out how to quickly get out of harm's way.

It was now close to 8:00
P
.
M
. Exhausted from the day's events, I could not relax. My mind raced with scenarios I might face when I tried to move Harvey from the hospital. Leaving nothing to chance, I made a run to the supermarket to stock the refrigerator and headed back to the facility to unload groceries and furniture. At 11:00
P
.
M
., I turned off the lights in what would be Harvey's new home.

Harvey was still sleeping when I arrived for the last time at
Meyer 6. I was relieved to be getting him out of the hospital but terrified about the day ahead. This time, I brought Jason with me. He knew I might need extra help getting Harvey into the car.

The plan, hatched on the way to the hospital, was for me to sit in the backseat with Harvey on the passenger side so Jason was not in a direct line of attack. I feared that if Harvey got violent and lashed out, Jason was the only one strong enough to control the car and get us safely off the road. I had all Harvey's favorite snacks and an ice chest filled with soda to distract him. It was like a flashback to my preparation for long car trips with my son as a child.

The hospital didn't have any instructions because my discharge plan contradicted their standard protocol. They warned me once more that any change in physical setting might set Harvey off. I signed the final papers. We had until noon to leave.

I tried to keep Harvey's routine that morning as normal as possible. I fed him a light breakfast: food would be my ploy to distract him on the drive. A sympathetic nurse dropped in to say good-bye. As she left, she slipped me a sample pack of Ativan, with the warning, “You may need this on the way home.” All that was left was to bathe and dress him. In the shower, I kept repeating, “Love, I'm getting you out of here as fast as I can. It's what you told me you wanted. No more hospitals. I promise.” I no longer knew how much of that promise I could keep.

Harvey refused to sit still in the wheelchair so two strong male orderlies escorted us to the car, parked in the fifteen-minute drop-off zone. For five minutes, I tried to cajole him into the backseat. Jason was already in the car and kept calling to Harvey to sit with him. Nothing was working. The cacophony of voices and the noise outside the hospital confused him. He wasn't processing anything and stood paralyzed outside the hospital's doors. So Jason and I exchanged places. I jumped behind the wheel of the driver's seat, pushed the passenger door opened and shouted, “Hi honey, I'm here to pick you up. Let's get out of here and go home.” With that, Harvey pulled away from the stunned orderlies and got into the car next to me. Jason shut the door and jumped into the backseat. I locked the doors. We were off. A block away, Jason and I switched seats.

The forty-five-minute ride was harrowing. My greatest fear was that Harvey might panic and try to open the locked car door. In frustration and rage, he might grab the steering wheel, endangering us all. I sat right behind him, gently massaging his neck. I knew it sometimes helped him calm down. When would the Ativan kick in? Would his favorite CDs that we were playing be familiar at all? Outside the hospital walls for the first time in months, did he remember anything about his former life?

Jason successfully navigated downtown Baltimore, riding the timed lights so we didn't have to stop, and pulled onto the 95 South interstate. Just forty-five minutes more to our Connecticut Avenue exit. As soon as it was safe, he maneuvered the car into the right-hand lane, just in case we had to suddenly pull off on the side of the road. I started talking, an upbeat stream of narrative of what we were seeing, in the hopes that some word or image might trigger a memory deep in Harvey's brain. We didn't stop by our home before going to Kensington Park. We pulled off the exit ramp and headed toward Kensington. Instead of turning left to our street, Jason took a right and headed down one block to the park, where Harvey's new residence loomed high on the hill directly in front of us. I had called ahead, and they were expecting us. Olga was already there. She waited with Harvey in the car at the entrance of building 3 while we went in to pick up the keys and drop off his suitcase. Jason felt comfortable enough to take off, teasing me that no one would believe our predicament, and made me promise to call him if needed. Thankful for Jason's help, I was now alone and in charge.

The late afternoon sun felt good on our faces, the air fresh. I longed to set Harvey free for a walk outside before he was confined again indefinitely. A neighborhood sports track was just over the knoll and the grounds. I knew his new quarters would be cramped and thought a long walk might help tire him out. I opened the side door, unbuckled Harvey's seatbelt, and let him go. Off he went up the path toward the track, with Olga and me running to catch up. He was moving so fast I had Olga follow him while I ran the track in the opposite direction, coming toward him in a sandwich formation. When I got closer, I saw him smiling for the first time since his stay in the hospital. Was Harvey laughing too? I was so delighted that I ran toward him with a smile and my arms open wide, but in an instant, his face turned menacing. His smile was gone. He shoved me hard and took off again at a powerful pace. Now I was panicked, worried about how we would control him. I was reluctant to send Olga for help, worried that the nursing home director would conclude that Harvey was too much trouble before we had even walked in the door.

Watching at a safe distance, I noticed that Harvey was fixated on staying on the track. He did not deviate outside the lines and showed no interest in the grass. It struck me that he was replicating his roaming behavior in the ward. On his second quarter mile, he stopped for a moment as if to catch his breath. This time when I moved in to help, he didn't bolt. He looked forlorn and helpless as Olga and I each took one hand. “Haven't you tested me enough today?” I asked him as we led him back. “Come on, let's go—” I was about to say “home,” but stopped myself. Any pretense was over.

What should have been a five-minute walk had become a twenty-minute ordeal. We made our way through a side entrance to the building, avoiding the manager's office, and got on an elevator that opened at the third-floor dementia unit, where patients were being brought in for dinner. Unexpectedly, Harvey refused to get off the elevator. With the elevator's alarm bell ringing, Olga ran off to get backup to help us corral him toward his room just seventy-five feet away. Presented with a wheelchair, he refused to sit down, and the nursing aides fearfully backed off. For the next fifteen minutes, we rode the elevator up and down, asking waiting guests to please take the steps. It was obvious we were managing an emergency. Each time we hit the third floor, we made another attempt to coax Harvey off. Finally it worked, but only because he was tired of being confined and wanted to roam.

The door of the suite opened onto a long, narrow corridor that branched off into a small moon-shaped living room and a bedroom just wide enough to accommodate a single bed and a small nightstand. A narrow Pullman kitchen and bathroom were directly off the corridor. It was cramped, but we had made it there safely. Olga helped me set up an air mattress at the foot of Harvey's bed. I wanted to be close but out of reach. The days of sharing a bed were over. I took the night shift and Olga promised to be back at seven the next morning. The night nurse dropped by and reviewed the regulations. It was after midnight before Harvey stopped roaming the room and gave in to staying put in bed. Exhausted, I lay down fully dressed and quietly cried myself to sleep.

Nothing about this new arrangement worked. Our effort at
establishing a daily routine around the facility's schedule was met with belligerence from Harvey. Isolated from the other residents and nursing aides, we abandoned their schedule and made up one that revolved around Harvey. The facility's offer of staff support to back up my nurses never materialized. Instead, the facility's caregivers reported to the head nurse that they were afraid of the aggressive man in suite 309. Side effects of the medication made Harvey pick at the air as if catching imaginary bugs between his fingertips. Without warning, he inappropriately pulled his pants down and up repeatedly. He was unable to tell us when he had to go to the bathroom, so whether inside or out, we carried a plastic urinal and a poncho to shield his behavior from the other patients. In an emergency, I was called first, day or night.