Slow Dancing with a Stranger (13 page)

She was an educated, refined, and conservatively dressed woman in her early fifties who had been a live-in aide to her former client for five years. She drove, wanted part-time work, had taken care of dementia patients before, and demanded a top hourly rate of $25. In fairness to my other staff, she had to earn her asking price, and the negotiations began. She rebuffed the offered two days of paid hands-on training by my team as an insult to her credentials. I should have stopped there, but I needed the help. I decided to try her out when I was alone in the house.

We got off to a bad start. Testing my tolerance, she arrived late, missing our scheduled time to feed, bathe, and dress Harvey. She helped herself to coffee and settled down in the family room with the
Washington Post
while Harvey wandered in circles around the center kitchen aisle. I was taken aback but said nothing. Trying to lead by example, I asked her to join me to review the schedule for the day, but it did not seem to change what she did. Twice before noon, we had to change Harvey's clothes because she didn't toilet him regularly. Out of the house for an hour after lunch to market, I returned to find Harvey wandering around, again in soiled pants. Before I could say anything, she informed me that my husband was uncooperative. She added that he reminded her of a wild animal in the zoo the way he paced, rubbed up against inanimate objects, and never sat down. Shocked by her cruel characterization and lack of empathy for someone so sick, I made it clear her services would not be needed.

She threatened to file a complaint and sue for a full month's salary, since she had passed up another private client to work with Harvey. I called her bluff with a take-it-or-leave-it payment for the five hours worked and showed her the door.

I wrestled with whether to report her behavior to either the licensing department or the person who had recommended her. After all, everyone has their own standards of care, but I also didn't want other families with dementia patients to fall prey. In the end, I e-mailed my friend and delicately advised her to be more careful about future references. She e-mailed back an apology and admitted her mother died from untreated bedsores. In hindsight, she felt guilty that she hadn't been more vigilant.

That encounter was the first in a slow parade of potential nursing aides that I turned away. Some were not strong enough or too old to manage his behavior. Others did not speak English; thick accents are hard for dementia patients. Then there were the many aides who wouldn't or couldn't work weekend rotations or refused to pitch in with other chores related to Harvey's care. A number of the references didn't check out. When calling references, I asked enough questions to enable me to distinguish extended family from legitimate former employers. Then there were the prospective aides who only claimed nursing as a passion because no one else would hire them. They lacked empathy, didn't touch Harvey unless necessary, and seemed immune to the suffering of others. Not only did each candidate have to pass muster with me, but Olga and Hla had a say in our selection. Any new hire needed to respect and feel responsible to them for their support.

Just as I was about to give up on finding a male nurse, a friend passed along a reference and introduced me to Marvin, a thirty-five-year-old doctor from the Philippines in search of a sponsor and a job. He was well educated, reserved, and infinitely patient, and he engaged with Harvey during the interview. Having a doctor work with us also allowed me to slowly wean Harvey off the heavy regimen of medication, which seemed to aggravate rather than ameliorate his behavior. I helped arrange an H1B visa so Marvin could work for Copper Ridge in their research center while filling in for me on an as-needed basis.

Now I had backup and a skilled professional with a trained eye to monitor Harvey—an important addition, since there was no way to get him to a doctor during regular hours. Marvin had also studied acupuncture in China, but Harvey was too aggressive to attempt a session. Four months later, tapping into the underground Philippine network, I hired Dindo, an outgoing, muscle-bound male nurse with a positive “bring it on” attitude who worked on an intensive-care cardiology team and wanted a second private-duty job. My staff now consisted of four part-time aides in rotation to buffer me if one got sick or left for one reason or another. No one was allowed to do more than an eight-hour shift; I was the exception as wife, case manager, cook, and on-call 24/7 nurse.

We all took our cues from Harvey while working to support and respect each other. We did not focus on the inevitable disease outcome; instead we built hope and pride into each day.

I had read that the best male caregivers were ex-military who continued to live by the code, “Honor. Duty. Country.” So I wove that sensibility into the way we cared for Harvey. Together we were a special unit. I lead the team by example and dignified our mission. We even developed a special code for certain unseemly personal cares duties—“Did Dr. Harvey give us a present today?”

There were weekly team meetings—debriefs to compare notes on what worked and what didn't. I was constantly testing new alternative therapies and dreaming up things to try with Harvey to extend whatever capacities he had left so the nurses didn't get bored or give up. Researchers call it palliative care; we nicknamed it Six Sigma after precision quality control.

It was comforting to have two men on the team, beyond just having backup for Harvey's episodic and explosive rage. Dindo was our master engineer at fixing things, while Marvin tried to methodically retrain Harvey's brain using repetition. But having men in the house sometimes made me uncomfortable. For one thing, I felt the need to be dressed and not in a bathrobe if they had the 7:00
A
.
M
. shift. There was also an intimacy to the care that always reminded me I was Harvey's wife and not another hired nurse.

The first time I had Marvin help me get Harvey ready for bed still amuses me. I was using a Texas catheter that slips over the penis like a condom and drains out into a bag to save me from constantly changing wet sheets. Halfway through the procedure I began to blush, embarrassed to have another man watch me touch my husband in such an intimate way. Whatever vestige of privacy was gone at home unless I retreated to my upstairs bedroom office.

In just three months, Harvey walked nonstop circles right
through a colorful hand-woven tapestry rug in the family room. We slowly weaned him off his meds, one at a time, and saw him regain enough cognitive capacity to answer five questions: his name, my name, where he worked, and the names of our immediate family and our long-deceased dog, Sash.

When friends suggested that I get a dog to keep us company, I laughed. I couldn't take care of one more thing. It only showed me that they had no clue about the details of my life.

So consumed was I about honoring and dignifying Harvey with the best possible care, I failed to notice I was beginning to shut down.

Our home went silent: no classical music—a ritual on early Sunday mornings with coffee, the
New York Times
, and whichever
Wall Street Journals
had been missed that week. Off-limits was a night out for dinner and adult conversation. Once gregarious and outgoing, I felt myself become quiet and removed in conversation on rare times out. It was as if I had forgotten how to banter and relax. Color faded from my wardrobe as did the brightness from my eyes. I wore only black from head to toe like a widow. In many ways I was one.

Most of my closest women friends lived elsewhere, but they propped me up with steadfast support. Separated in age by a decade either way, we were all spirited and role models of survival. We had all connected in better times, but their lives had stayed on track, if you exclude kids in rehab, divorces, and death. Outwardly they were living exciting and privileged lives that kept them scattered around the globe.

They were my lifeline to the outside world, but alarmed by what was happening to me. As the well spouse and caregiver, I was disappearing too. They wanted me back with the living.

Each of them stepped in to wage their own personalized “Save Meryl” campaigns. Trish, my advocate alter-ego with whom I spoke almost daily, was adamant that I deserved a life too. She invited me to their dinner parties or events around town, even though she knew I had to leave early or might not even show. She joked that I gave off no signs of being eligible. I wasn't.

Time after time, Alzheimer's insulted and tested the loyalty of the few close friends I had left. From Paris, Michette helped me purchased Memantine, a booster drug to modulate dementia symptoms that sold over the counter for $200 per pill, but was not yet approved in the United States. But I regretfully missed her husband's funeral because of an emergency at home with Harvey.

Lisa, a documentary filmmaker and world traveler, rescued me whenever possible—luring me out for occasional quick trips to kayak, hike, cross-country ski, and share her passion for opera. She even shared her hotel room to help me defray my expenses and put up with my incessant check-ins to home. I missed her fiftieth birthday celebration and her Kennedy Center film premiere. Each time it was a last-minute emergency; each time we blamed Alzheimer's over a catch-up glass of wine.

The connecting link for two of my intimate friends was Lin, who had recruited us for her YoungArts board. The last of my fondest memories with Harvey are photos of trips shared with Lin and her husband, Ted, who attracted a fascinating mix of business leaders, artists, and celebrities.

All my friends turned down reciprocal invites to stay with me in my home. I got their message, and I loved them for it. The most trying part of their rescue effort was my re-entry back to a lonely reality.

Not surprisingly, no suitor was knocking on my door. On the
other hand, women lined up to offer comfort and companionship to men I knew whose wives were ill or had just passed away. The few men who kept in touch with me maintained a safe distance by phone or e-mail. One man, calling for a professional referral, became intrigued with my openly constructive critique of his business model—or perhaps it was the amusing start to the call, when I confessed that I might not be too coherent because I had taken my husband's meds by mistake. The intellectual banter woke me up; my circumstances shut him down.

A West Coast developer/golfer turned writer whom I sat next to on a shuttle flight from New York turned out to share mutual friends. He called me almost every week for three years. The attention was flattering, and harmlessly erased a bit of the void. Brazen overtures from married men, assuming that I was vulnerable, were both disappointing and insulting. I politely avoided their calls since I knew their wives.

Early in Harvey's disease, I did attempt just once to invite a gentleman over to the house for a glass of wine after I put Harvey to bed. He was a widower with two teen daughters. I worried about what might happen if Harvey started shouting or got out of bed. The baby monitor was next to my wine glass in the kitchen, and I could hear Harvey's every toss and turn in the room nearby. I kept apologizing. It was a disaster, and the visit lasted forty-five minutes. No sooner had he left than I pulled back the curtains to check on Harvey. There he was sleeping soundly on top instead of under the covers. Reflecting off the polished hardwood floors was a pool of urine: Harvey disapproved.

Most women I knew who did have another man usually had
their spouse in a facility. I was never jealous or judgmental but very aware that they had orchestrated a life between the pain.

One time a woman friend called to share her excitement that she was seeing someone even though her two sons didn't approve. “Do you remember what it feels like to have someone who makes you feel desired and cared for?” she asked. Suddenly, it hit me: I did not remember. No one caressed my hair, touched my arm, or called to make sure that I was okay. I didn't hear the rest of her conversation.

Many a night I was wide awake and couldn't settle down, even though I knew I would be up again with Harvey several times during the night. I often reached for some distraction on the library shelf nearby. I began escaping into my own head at night. Nonfiction and biographies, mixed with self-help, fashion magazines, and medical mysteries, were piled high next to diapers, pads, prescriptions, and a panic button direct to 911. When longing for intimacy got the best of me, I attempted to write romance, a genre I never read, using a pseudonym and conjuring up men from my past.

Cabin of Our Feelings

Madison pushed back from the computer and reread her thoughts. Not her typical style but accurate to the cascade of emotions when she let down her guard. They had been snowed in for a lazy day of love-making interspersed with the solitary business of staying connected but unconnected to their respective worlds.

. . . She had flown all the way to Bozeman, Montana, to escape her life and “live the moment.” . . . How dumb to be playing games with someone she had known professionally for years but barely knew personally. And why had she sent him away when she wanted him close for company in front of the fireplace?

My attempts at writing romance fared no better than they had in real life. At the close of each short story, I always insisted on weaving back to the reality of my present.

I turn into his warmth and once again am lost to his power, which is both commanding and gentle. . . . I feel lost, yet found. He is my Montana. . . . Then a soft buzzer went off. She reluctantly turned to refocus on the lost decade of her prime and the adjacent bed with her sick husband lying in it. It was time to turn his mindless and rigid body to prevent bedsores.

Even in the fictional world, I never allowed myself or my characters to stay very long in Montana. I gave up romance writing and shoved the half-finished stories in a drawer.

I already had one unreachable man. It was no comfort trying to fabricate or end up with another.