Slow Dancing with a Stranger Read online

  “What is your name? What day is it?” My mother knew her name but was a bit confused on the date. So was I.

  “Can you tell me the name of the president of the United States?”

  Mustering the energy for more drama, she replied, “Do I have to say his name?”

  The attending team was amused until I interrupted with, “Be careful. That’s a political statement. You may want to leave it alone.”

  The nursing desk nearby erupted in laughter, and the senior resident quickly finished the paperwork to avoid further conversation. We would have to wait for a bed to become available, but it was clear she would need private nursing care. That duty was now mine. I got back home at 9:00 P.M., just in time for my nightly nursing shift. It had been a difficult day for Harvey without me. I ate dinner while the nurse debriefed me in the kitchen.

  My mother’s hospital stay dragged on for a week. The doctors wanted to wait for the jaundice to clear, but the nurses seemed eager for her to go. Her prickly personality antagonized the hospital staff. I tried to defuse the situation, sitting by her bedside whenever I wasn’t on duty with Harvey. I recounted childhood memories of good times we had shared and pointed out that there were still years left to enjoy with her family. Despite the family stories, my mother seethed with anger and bitterness. I wondered if it was the creep of dementia that seemed to dismantle the social filters of her personality. Was she too tired to hide emotions she had always felt? I knew that she could not return right away, if ever, to her own home. I did not want to search for an assisted living center; I already knew the expense, and given my mother’s difficult personality, I figured it wouldn’t take long before she got kicked out.

  Given the bleak options, it made the most sense to just move my mother in with me. She had never liked Harvey or doctors in general. How would she react living under the same roof? I wasn’t sure if the fragile infrastructure I had patched together for Harvey could withstand this new challenge. Still, I knew I would not turn her away. She was my mother and deserved the same love and care that I lavished on Harvey.

  No sooner had I made up my mind than Jason and Dana stepped in with a loving and generous offer to keep my mother with them until we sorted out what to do next. They knew they could not help me with Harvey, but “GG” was manageable. As soon as the hospital discharged her, she moved into their house. We even hoped it might be therapeutic for my mother to be close to her great-grandchildren. They called her “GG” and came scrambling into her guest bedroom over the garage to snuggle and play early each morning. Privately I worried that my mother’s newness as a guest might wear off quickly. Dealing with MCI (mild cognitive impairment), along with chronic health problems, tests even the most close-knit of families.

  We all settled into a new juggling routine. During a free moment in the day or around dinner, I would drop by to spend time with my mother and play with my youngest grandchild, Benjamin, who was not yet in school. It was then we began to notice that his little mind was on its own path in the way he played. The pediatrician dismissed our concerns, attributing the behaviors to those of a spoiled child and over-reacting parents. My advice to Dana, who had watched me battle insensitive doctors, was to trust her instincts as a mother. They sought a second opinion; unfortunately she was right. Remarkably Dana managed the intricate family dynamics with a cheerful spirit and talent that belied the pressures on all of us. A year passed this way.

  By now, my mother was soon showing subtle but undeniable signs of dementia. Her growing paranoia that people were stealing from her or trying to harm her convinced me it was time for her to move again. My mother demanded to return home unattended, an impossible situation. Instead, we floated with her the idea of renting an apartment nearby so we could all be close. I couched the conversation as if there were options and the choice was hers. This was a ruse I had often used to negotiate with Harvey in the early days of his disease.

  Together, we checked out independent living quarters at the best senior and continuing care retirement communities situated close by. But my mother was growing imperious and critiquing each place we visited. No facility met her exacting standards. She declared them shabby, even those whose faux-wood panels tried to replicate the look of a five-star hotel. In exasperation after yet another failed trip, I finally asked her directly what was wrong. She looked at me through faded blue eyes as she leaned forward over her walker and blurted out indignantly, “I don’t want to live with old people. I want to be alone.”

  In the end, I moved her into a brand-new building in nearby Bethesda populated mainly with foreign college students and professionals who wanted to be both urban and suburban. I signed a short-term lease, uncertain how long the arrangement might last. Knowing that my daily routine might not permit extended visits, I paid extra for a one-bedroom apartment with high ceilings on an upper floor with a view that captured both the morning light and afternoon sunsets. I hoped to limit her wandering to a bit of exercise in the hallways. If she made it down the elevator, she wouldn’t get past the front desk.

  We decorated her apartment sparsely in less than three days. All the home furnishings had been buried in boxes after Harvey got sick and rediscovered like fossils from a life before Alzheimer’s. We bought plants and a newly stocked toy chest for when Jason’s children came over to visit. I also gave the front desk attendant emergency numbers, paid the housekeeper on the floor extra to drop by to make sure the stove was turned off, and installed phones in every room. I put my phone number on every door, written large enough to be read across the room. I made five sets of keys and left them in different places around the house in case my mother forgot where she put them. I also slipped a note under the door of each neighbor’s unit with my contact information in case there was trouble.

  Unpacking the cartons, I was occasionally distracted by the view out the window, a sunset that went from brilliant purple to orange and other colors that warmed the late afternoon sky. For a fleeting moment, I imagined moving in here myself and leaving my mother at my house with Harvey and the nurses. The sky darkened, and I went back to stocking the refrigerator.

  Sorting out how to address my mother’s health issues consumed me for months. Her doctors balked at running an expensive PET scan that might give her an official diagnosis of Alzheimer’s, but her symptoms mimicked the disease and we assumed that was what she had.

  Harvey’s condition continued to deteriorate in episodic crises that left him even further diminished. He was now wheelchair bound after a bad fall that had immobilized him. A portable MRI showed no broken bones, so we did our best to rehabilitate him to stand for brief periods of time. He also lost the last vestiges of speech we had worked so hard to preserve. The doctors told me these were signs of the later stages of the disease. Harvey was still strong enough to throw an occasional and unprovoked punch, but most days we considered it an achievement if he turned his head toward the sound of our voices or was calmed by our touch.

  Sometimes wanting to recapture the sound and vigor of his lost voice, I pressed the message on our answering machine. Over and over, I heard him say, “Hello. Meryl and I are not available right now. . . . Hello. Meryl and I are not available right now. . . .”

  I shuttled daily between home and my mother’s apartment. I shopped for two households, bringing food, spending time, making dinner, cleaning up, and getting my mother settled for the night before heading home and going through the same routine with Harvey. Her paranoia in the hours between my daily visits and those by my daughter-in-law grew progressively worse. She imagined that uninvited strangers had broken into her apartment and stolen her money. She lashed out at me in rage, frustrated that she could not remember where she put things. Even when I retrieved a misplaced item, usually from the handbag that hung from her walker in plain sight, she insisted someone had stolen it. Her geriatrician recommended Seroquel for the paranoia, but we held off on giving her an antipsychotic because of the warned side effects. Instead, I lived with her delusions and inces
sant calls, knowing this was far better than trying to imagine where she was or if something might have happened. But this decision, made with the best of intentions, would soon backfire.

  One day in early spring 2007, I was attending a meeting about the latest Alzheimer’s disease research held at the National Science Foundation. My Blackberry started buzzing. The name Montgomery County Social Services flashed on the screen. Assuming it was a solicitation, I initially ignored it. I eventually checked my messages. A social worker was trying to reach me regarding a complaint that I was holding a senior against her will somewhere in Bethesda. I returned the call immediately and discovered that my mother had reported me. I brought her doctor in on a conference call to immediately set the record straight. Yes, the doctor confirmed, my mother lived independently in an apartment building with a family safety net of care and daily visits. No, she was not in danger of wandering away. Despite these assurances, the social worker warned me if this happened again, the county would have to open a case against me for adult neglect.

  Less than an hour after that call, I went to my mother’s apartment. When I entered and recounted what had happened, she had no recollection of calling social services. I believed her but still reminded her that if she continued her behavior it would be impossible to remain independent and live alone. “Do you want your daughter to have a police record?” I asked her in agitation but only got a blank stare in return. On my way out, I pulled out all but one phone in the kitchen, but left the signs up with my contact information. Four months later, the police came looking for me.

  It was the end of another long day. After dinner with my mother, I put her to bed and waited until she was sound asleep to slip away. Jason had insisted that we install a webcam in every room. Initially, I resisted it as too personally intrusive, but it was the only way to monitor her safety. Installation was scheduled for the following week.

  I drove home and focused on settling Harvey down for the night. He had begun to develop seizure-like body spasms that woke us both up. I had just crawled into bed beside him to massage and comfort him when the phone rang. It was 11:30 P.M. The local police department reported a 911 call from my mother. She said she was scared, and that her daughter had abandoned her. When the police arrived at my mother’s apartment, she refused to let them in. The security guard gave them access, and they entered to find my mother hiding in a closet. My phone number was posted on the door, which is how I was located. I explained the situation and promised that either my son or I would be over to pick her up. Jason took my mother back to his home for the night, but I didn’t want to burden them further.

  I was done with trying to support my mother’s illusion of independence. She was coming back to my house with emotional baggage that reopened relationship wounds, which I had buried as long-forgotten history.

  The next morning, Jason pushed my mother’s wheelchair through the back entrance of the house. “You told me I was going home,” my mother said defiantly, but the home she longed for now was her childhood house in a Jewish immigrant enclave in Philadelphia. She did not remember the apartment on the Jersey shore. She asked where her parents were and when they would arrive to take her home.

  I promised her that this was a temporary visit until I could drive her home, but first we had to interview someone to go with her. Suddenly, her gaze fixed on Harvey asleep in his wheelchair in the family room. No longer ambulatory, this is where he now spent most of his days. We tried to move the wheelchair to different parts of the house based on the best place to catch the sunlight to warm his face while he slept. He was not even aware of my mother’s presence.

  “Who is that man over there?” my mother demanded. “What was his name—the one you married? He didn’t deserve you. I hope you got rid of him.”

  “Mother, this is Harvey, but he has been sick for many years. Just because you never liked doctors doesn’t mean he wasn’t a good man,” I replied. “Remember how he helped us with Daddy when he was sick?”

  I tried to change the conversation, but not before my mother asked again, “So when are my mother and father going to pick me up?”

  Jason wheeled her into the dining room. Photos of the great-grandchildren were strategically placed in front of crystal wine decanters that I hadn’t had time to put away. I wondered if she noticed the glass dining table for ten had been pushed off to the side to make room for a queen-size bed. I had draped the open archways so that she could not see the threatening stranger in the adjacent room. The nurses quickly learned to keep them apart.

  After two days, I was already at my wit’s end. This arrangement was doomed. No matter how patient nor how hard I tried to please her, nothing was right. I resolved to speed up the interview process for a companion caregiver who would live with my mother in her own home.

  At first, I let my mother sit in on the interviews, hoping that if my mother liked the caregiver, the new arrangement might work better. I quickly realized this was not going to work. One applicant walked out after my mother accused her out of the blue of stealing her wallet.

  I eventually settled on Maria, a woman in her midthirties who drove and appeared committed to making this work. She liked having the privacy of her own duplex above my mother’s apartment. We agreed that either one of my nurses or I would relieve her for four days every three weeks. She seemed resilient and good natured enough to withstand my mother’s rage. She worked by my side to bathe, dress, and serve as a companion to my mother over the next three weeks. Then the two of them went back to my mother’s seaside apartment in New Jersey.

  Maria tried to make the new arrangement work, but it was difficult. Before they left, I called the New Jersey police to tell them that there was an elderly female resident living at the Margate address who had Alzheimer’s disease, and confirmed that the caregiver in the house was legitimate.

  Still, a few days after my mother left, at 2:30 P.M., the police called. My mother had tried to climb out the window and was screaming for help. On the other line was Maria. She apologized profusely, saying she had slipped out to the market while my mother slept and had locked the doors for safety. For an arthritic eighty-five-year-old woman, my mother’s dexterity and physical strength confounded me.

  I tried to reassure Maria that there was a settling-in period whenever an Alzheimer’s patient was moved. I coached her on the stratagems I had used to try to manage similar behavior in Harvey. I suggested that she pull the plug on the phone before she left the house.

  My mother refused to bathe or eat until she was so hungry she forgot to complain. Often, Maria was forced to retreat to the other room and wait until my mother’s anger had calmed enough for her to venture back. My mother no longer lived in the present. She seemed most upset that her parents, dead for decades now, had still not arrived to pick her up. I felt guilty and upset for deluding myself that sending her back to her apartment might solve the problem.

  Fearful that my mother might call the police or get into trouble when she was absent from the house, Maria started taking her whenever she went out. It was exhausting, even for someone young and strong. A ten-minute trip to the pharmacy often ended up taking two hours. On one such occasion, my mother started screaming for help in the middle of the store parking lot, shouting that she was being kidnapped.

  A favorite outing to the Jersey boardwalk to watch the ocean turned dark when my mother screamed out to a passing patrol officer on a bike. Each time, the police were required to respond and report the incident even though it was easy to read the circumstances. I feared we were rapidly becoming a nuisance. After each new episode, we put new routines into place to try to address the issue. Instead of Maria going out to buy groceries or pick up prescriptions, she had them delivered. Outings were now limited to the small porch outside the kitchen area to take in the afternoon sun. Maria was getting claustrophobic, shut in the home all day with an elderly woman who often screamed. It felt like the phone rang incessantly. When I spoke with Maria, I could hear the frustration in he
r voice, and she sometimes dissolved into tears. I realized that Maria was likely in over her head, but I did not have the resources to immediately rectify the situation, so I focused mostly on trying to prop up her spirit.

  A few weeks later, there was a knock at the front door. I opened it to find Maria in tears and my mother in the back-seat of the car. Maria helped me get my mother, who was shouting profanities, out of the car and around to the patio in the back of the house. My mother berated the young woman as I defended her. Then I raised my voice in a parenting tone: “Mother, stop it. Don’t you dare insult Maria whom I hired to help you. It is you who have closed down all your options.”

  Moving out of my mother’s line of sight, I quickly debriefed Maria, though our constant and daily phone contact left me with no surprises. Apologetic but unwavering, she was at her breaking point and couldn’t continue. She handed over the daily nursing book and all the receipts with the credit card I had arranged for her. Maria thanked me for not yelling at her. She didn’t even want to wait for her final check and asked me to mail it. From her car, she rolled down her window to say, “I don’t know how you do it. You’re a saint.” She backed out of my driveway and drove away to reclaim her life. I brought my mother inside and shut the door behind her. My mother was home for good.

  NINE

  BEHIND CLOSED DOORS

  Once again, I had two Alzheimer’s patients in my house. The dining room was still converted into a bedroom from the last time my mother was there.

  The immediate issue was my mother’s behavior. I could predict what would happen to my mother in a facility. Unlike Harvey, she fit the demographic, but she was midway into the disease and still fighting for control. Her meanness meant the nursing staff would limit their interaction. Personal hygiene would lapse; bruising or bedsores might be missed if I didn’t take the time to undress her. Every time I resolved to test a facility, I got cold feet. Each time I bathed her, a wave of nausea swept over me for considering such a move.