Slow Dancing with a Stranger (10 page)

I found myself arguing with management that my team was not getting adequate support. At the same time, they seemed to be trying to build a case that my team was unable to control Harvey.

“This memo is to inform you of the event that occurred on the morning of October 1, 2001, at approximately 8:30
A
.
M
.,” read one of a number of memos I started receiving from the facility. “Dr. Gralnick and his caregiver were in the elevator and I heard his companion say, ‘Don't do it, don't do it.' It seemed to me that he was trying to urinate in the elevator. When he exited, I approached him very gently, touched his arm, and asked if I could talk to him. At that point he turned around and shoved me into the elevator. The door started to close, and Dr. Gralnick grabbed me by both of my wrists, in a very violent manner, and exposed himself to me. The caregiver was able to get him off of me, out of the elevator on the main floor, and escort him outside the building for a walk. Dr. Gralnick does not follow instructions. He scared me to the point where I was shaking when I got to my office. In my opinion Dr. Gralnick needs a male caregiver. It is obvious that he could hurt a woman easily if he becomes violent/aggressive again.”

I read these memos in anger and also sadness. I had come to realize that patient summaries told only half the story. They were designed to protect the institution if someone complained. I knew that Harvey's illness made it impossible for him to control his behavior. That said, it seemed improbable that he could grab someone by both wrists and expose himself at the same time. Still, I kept silent. If I complained or drew attention to Harvey's actions, we would be asked to leave.

It was clear that our days there were numbered. Facilities like Kensington Park did not have the manpower that someone with dementia needed. Staff was constantly turning over, and it was hard to make a personal connection with Harvey, who resisted being fed or washed or changed, even by us.

A week after getting the latest memo, I raised the issue of a change with my nursing team. How would they feel if we took Harvey home instead of moving him to another facility, where similar issues were bound to occur? They greeted the idea with relief rather than hesitation. The time at Kensington Park had been hard on them too. We knew that if he exposed himself again, we would probably be asked to leave. We had tried everything to keep Harvey appropriate and under control. We dressed him in jumpsuits and tried suspenders so he couldn't easily pull his pants up or down, but that usually resulted in us struggling to change him out of soiled clothes. If he exposed himself at home, who would care? We could remove the furniture from the family room, and he could circle the cooking island in the kitchen all day if he wanted.

There were serious issues involved in moving him home. We would be free from the restrictions of Kensington Park, but Harvey hadn't lived at home in six months, and his physical and mental capabilities had deteriorated during his time away. Could he still climb steps to the second-floor master bedroom? If not, how would we bathe him on the first floor? I asked them to weigh the issues and help decide if we needed a strong male nurse on the team. “We need to be prepared for the next round,” I told them. “Each move with Harvey is traumatic, so this decision is a big one and we'll make it together.” Meanwhile, I quietly began mapping out scenarios for his return home.

Our family was no different than others trying to deal with
Alzheimer's disease. Each son had their own distinct way of coping. Mark visited us only twice early in the disease while his father could still communicate; then remained physically absent the next eighteen years. By contrast, Jason wanted to know every detail and did extensive research looking to fix the unfixable. He feared for my personal safety and chastised me for contemplating the idea of bringing Harvey home. Jason knew I hadn't been completely candid with him about Harvey's aggressive behaviors. However, we both agreed that Harvey was unlikely to be allowed to stay for long at the nearby facility. Coming home was the only realistic interim solution until a spot opened up at Copper Ridge. Admission there was taking longer since we required a private room. We were now second on the waiting list. I prepared the paperwork and scheduled a visit for the following week so we could be ready whenever a spot for Harvey opened up.

Back at Kensington Park, Harvey's behavior continued to be problematic. Now I was only permitted to walk the halls with him at night, when the patients were asleep in their rooms. Then, eight weeks after we first arrived, our stay at Kensington Park came to an abrupt end. During a music session, it was reported that Harvey approached a female resident and exposed himself. His caregiver reported that he did not pull out his genitals. It didn't matter. We were told he could not leave his quarters and we had to vacate the premises.

Two days later, we made our way through the empty halls and left before dawn. It was again an ordeal getting Harvey into the car, but there was no dementia guide for our perplexing re-entry home.

We had lived in the same house for close to twenty years, but nothing was familiar to Harvey—not the pictures on the walls, the books on the shelves, or the furniture that we bought to decorate each room. It took three of us thirty minutes to cajole Harvey up two steps to the back door and an hour of trial and error to reach the second-floor landing. Each step was treated like a victory and cheered silently. Once there, we showered him and lead him into the softly lit master bedroom. Noise set him off so it was only my voice that guided his every move. I arranged a pile of decorative pillows into a barricade down the center of our king-size bed. If Harvey saw me sleeping next to him, I risked being attacked as a stranger. The bedside lamp stayed on. Trying to think ahead of his every move was exhausting. I hung a souvenir cowbell from Switzerland on our bedroom doorknob as a precaution in case he tried to sneak out in the middle of the night. We gave him some Ativan mixed in some homemade applesauce and finally he drifted off to sleep.

For the next five days, we lived on the second floor because
Harvey had become terrified of the steps. I had been worried he could not walk up the stairs but never planned for him being frightened by the descent. I used those days to reconfigure a small side-room library at the front of the house into a bedroom. I installed Smith and Hawkins iron garden gates instead of a child safety gate to control his movement and keep him away from the steps. I put the sofas and chairs in the family room on heavy rubber bed stilts to make it easier for us to help him to sit down.

How to keep him clean confounded me: a sponge bath was not a solution. Then I remembered the small European bathrooms in the hotels when we traveled—nothing more than a toilet, a small sink with wall tile surrounds, and a drain in the floor so one could also shower. I called a contractor, who showed up the next day with two men to convert the small guest bathroom. The foreman told me the job would take at least two weeks, but after watching me coach Harvey slowly down fifteen stairs from a seated position, one step at a time, they finished in less than a week and presented me a bill for half the original quote. I never thought about how strange we must look to outsiders, but clearly these tough men couldn't believe what they had seen.

Life at home was now limited to the first floor. I priced out the
installation of an elevator, but it was the cost of a year's worth of care. The nurses and I worked together, always aware that Harvey could strike out without warning. I brought in an instructor for a session in self-defense and to demonstrate how to unlock Harvey's vice-like grip. My personal survival regimen—a weekly weight-training session with a former pro athlete nicknamed Huggy, who pushed me to my physical max and pumped up my courage.

I devised a daily record so we could track Harvey's moods and behavior; whatever worked we repeated, and then shared techniques. He rarely spoke other than to curse, so we just kept up a cheerful one-way conversation with him while searching for some flicker of recognition or positive response. We prepared his favorite finger foods that he picked up and ate as he wandered the kitchen. Harvey could no longer verbalize his appreciation, so the quirkiest of behaviors became endearing. Any measure of cooperation coaxed out of him scored as a win. But we never let down our guard and maneuvered around him only with great caution.

Winter approached, and soon the holidays were upon us. I
threw a subdued party for the nurses, handing out gifts and awards to the team for their spirit and courage. All the while, in the middle of the room, Harvey circled. As his brain shut down, so did his vision. He lost much of his ability to speak. One of the only words he could still say was his name. Our twenty-third wedding anniversary and my birthday went by as forgotten, irrelevant dates.

There was a deep emptiness in my life; sometimes I felt as if I didn't exist. Then in late January 2002, I received a call that there was an opening at Copper Ridge. Was I interested?

Despite everything I had endured, I was still ambivalent. What if it didn't work? My previous experiences with Harvey in the locked ward at the hospital and at the nursing facility couldn't simply be erased. I was hypervigilant, programmed to run interference for Harvey every step of the way. Turning off that intensity was impossible; I didn't know how to behave differently. There was also no guarantee that the doctors at Copper Ridge would be any more successful at finding a drug to manage Harvey's aggressiveness without dramatically diminishing what was left of his mental capacity. What was best for Harvey?

There were also more practical considerations. Would Harvey's nurses drive the hour each way to Copper Ridge? Was it a safe commute on back roads in bad weather? What if we were asked to leave Copper Ridge? Harvey's behavior was getting progressively worse. His doctor and my son Jason weighed in again and left me no options.

So five months later on February 4, 2002, we left the home we had shared for most of our marriage and set out for Copper Ridge. I closed the door behind me and refused to look back.

T
he off-highway route to Copper Ridge passed scenic rolling hills and a countryside of red farms with bales of neatly cut hay stacked alongside. Winter parched the panorama, but the chill I felt came from within. Harvey had started drifting away from me emotionally long ago. Now the view out the window evoked the vastness of our imminent physical separation. Driving through this unfamiliar terrain, I felt unmoored. I felt like a failure, unable to rescue the man I loved. The road to Copper Ridge was a reminder of how dramatically the landscape of my own life had shifted. Everything looked different.

My friends had argued relentlessly that I needed to seize this opportunity. At times, it felt like a Greek chorus, dressed in black and predicting doom; their discordant notes echoing in my head. To be fair, they often put into words what I sometimes thought to myself but never dared say out loud.

“You've done all you can. You managed the nightmare and gave up your career.”

“Put him somewhere safe and reclaim your life.”

“No one deserves to be on call 24/7. It's not too late to move forward.”

“Get out while you can before it is too late.”

I understood the arguments presented to bolster their case that Copper Ridge represented a safe haven, not only for Harvey, but for me. The stress and the intensity of care that Harvey required—trying to anticipate his every need and keep both him and his caregivers safe as his agitation and propensity to lash out grew—took an enormous toll on my physical and mental health. I could never relax.

I often found myself sinking into a deep depression fueled by my growing sense of isolation. Even with nursing help, Harvey's care consumed all my energies. When I did leave the house, it was time used to run errands or see my grandchildren. There was no allowance in our budget for respite care.

The only time I was physically absent was for a monthly, eight-hour, same-day round-trip drive to check on my widowed mother. She was still feisty at eighty-four, but the problems with Harvey meant that I wasn't spending as much time with her. She needed my attention.

Recently, she had been in a minor fender bender, but when the police charged her for making a turn from the wrong lane she abruptly gave up driving. She no longer had any interest in walking the three blocks to the beach, even though watching the ocean had been her major source of comfort through the loss of both my brother and my father.

Even after she retired at age seventy-one, my mother had the exacting demeanor of a proud and independent woman. Always fastidious in her dress, she still looked as if she was headed off to teach class even when she was just doing chores around the house. Now she seldom dressed up unless she had a doctor's appointment. She let her blond highlighted hair go completely white. Unread newspapers stacked up in piles. There were other signs she needed help. She loved to cook so I had bought her a freezer, but she started forgetting her recipes and letting food spoil.

Over the years, her women friends had died off one by one. She had no energy to make new friends and refused hired help, even weekly grocery deliveries billed to my account. My mother made it clear she wanted only me.

So twice a month, I left Harvey in the care of the aides and made the trip to my mother's house to stock her refrigerator, clean the apartment, and take her out for an early Chinese dinner. Then it was right back on the road to reach home in time for my night shift. The entire time I was with her, I worried constantly about what might happen in my absence. She refused to wear a medical alert device to trigger the medics and declined my offer to recruit a college aide part-time. Visits to my mother came to resemble my trips with Harvey to the nursing facilities and the hospital; I never calmed down until I walked out the door.