Slow Dancing with a Stranger (14 page)

O
ne early evening in March 2006, almost four years since Harvey's return from Copper Ridge, I got a phone call from the retired handyman who kept an eye on my mother's house. Ziggy had known my mother for forty years, but lately, he said, she treated him like a stranger. When he went to check on her, he noticed her beloved
New York Times
newspapers stacking up at the front door. When he rang the bell to check on how she was doing, she refused to answer the door.

I had suspected for some time that something was going on with my mother's health. In our daily phone calls, she was growing more distant. When I asked about her health, she deflected the questions, preferring to talk in vague generalities. I didn't have the energy to push matters further. Ziggy's call flagged that my mother required my immediate attention. No sooner had I hung up the phone than my instincts for self-preservation dissolved into a crushing sense of guilt. It was time for me to assume the parental role in our relationship. I just hoped it wasn't too late.

I arrived early the next morning, after a sleepless night shift, to find my mother too weak to answer the door. I let myself into the duplex apartment three blocks from the seashore of New Jersey, unsure of what I might find and with the apprehension of every adult child who has respected an elderly parent's wishes too long.

After my father died, my mother had always insisted that she wanted to live alone. An English teacher with a master's degree in library science, she was well organized and her apartment immaculate. She prided herself on her quick-witted rebuttals to the politicians and pundits that appeared on CNN and C-SPAN, the two channels she kept on as constant companions throughout the day.

I looked around for telltale signs of disarray. Nothing was out of place. However, I was not prepared for what I saw next. The delicate complexion of my mother's elegant life-worn face was now tinged yellow with jaundice. The rancid odor in her bedroom confirmed that she had not bathed or changed her soiled clothes for at least a week. She kept repeating that she had no appetite to either eat or live. I bathed and dressed her, packed enough clothes for an extended stay, and trashed the spoiled contents of her refrigerator—a Pandora's box of poison accumulated by the lady who once loved to cook and now had forgotten to eat. I called my primary care physician, who agreed to meet us in the emergency room at Georgetown Hospital in D.C. The next call was to the nurse watching Harvey, asking him to stay longer.

I couldn't move my mother alone, so I went knocking on the neighbors' doors for help. It was an elderly community of seaside bungalows, and many of the residents looked in worse shape than my mother. A passing postman came to the rescue. Together we carried her to the car and nestled her into the backseat, which I had bolstered with quilts and pillows. It was a four-hour trip direct to the emergency room.

Ambulances and police cars blocked the entrance to the packed
emergency room. The only way into the hospital was the main entrance, where I commandeered an orderly with a wheelchair to help extract my mother from the car. I knew the drill; at her age and despite her jaundiced condition, the emergency room would be a holding place once they hooked her up to an IV drip. The next procedure was the all-too-familiar mini-interrogation, administered by a senior resident, too brusque and short on manners for my mother.

“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 incessant 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.