Strangers Tend to Tell Me Things Read online

  Rheumatoid arthritis had attacked all of her joints, pulling her fingers and toes sideways. After multiple surgeries to replace a knee, a shoulder, and other smaller joints in her hands and feet, she became extremely frail and disabled. The Life Alert button my sister Anne got for her, and which she wore around her wrist, did in fact save her life, several times.

  The times Jane pressed her “I’ve fallen and I can’t get up” button, she was never found lying decorously on the floor, arm outstretched like in the ad. Instead, she was injured, sometimes seriously and always bloodily, because when she fell, she tended to hit her head on one of the sharp-edged heirlooms populating her small house.

  One time I showed her a full-page advertisement for one of those fancy assisted-living places that dangle the promise of what an aged person’s life would be like. The people in the ads look like they’re my age; they seem to play a lot of golf. There is always a man AND a woman in these ads, and they’re always thin and fit. They look like they’re only one dose of Viagra away from playing a round of golf, if you know what I mean. So I showed my mother this ad, which said, Maturity is wonderful. Growing older is exciting!

  I looked at her. “What do you think, Mom? Is growing older exciting?”

  “It is the way I do it,” she said wryly.

  Late at night during her many hospitalizations, my sisters and I would meet in the parking lot between visiting shifts and stand in the snow and cry. You know how all the articles about caregiving talk about having regular family meetings and developing a family plan? Our family plan involved lots of standing in the parking lot, venting our despair.

  Our caretaking was pieced together in loose shifts—Rachel in the mornings, a paid caregiver through the day, and my mother’s two older sisters, Jean and Millie (both in their eighties), in the late afternoons. My sister Anne drove two hours from her home on the weekends. When I stopped in each day around supper time, I would see my elderly aunts, clutching their teacups, helpless to do much other than wipe down a counter or fix a sandwich for their youngest and much more frail sister. Her old friend and neighbor Deborah, a retired nurse, came in the evenings and left at midnight.

  Being with my mother during this stage of her life created weird parallels and muscle memories of my own experiences as a mother. Trying to take care of her brought back the old feeling of being completely frazzled and on the verge of a tantrum (often, my own), left over from my daughter’s childhood. It was a strange bookend experience of dealing with equipment, ailments, doctor’s appointments, and somebody else’s bodily functions.

  As the youngest of my mother’s four children, I am the yippy terrier at the end of her leash. My position in the family seems to have imprinted upon me a chronic need to please, which, when coupled with some basic competency issues, sometimes made me more of a menace than a true helpmate to her. I am someone who forgets the roll of stamps at the post office window and drives away from the gas pump with the nozzle still attached to the tank. My most dangerous characteristic is my tendency to try to be helpful. The worst true statement that can be made about me is that I mean well.

  I’m fairly certain that if polled, my two older sisters would have voted me most likely to run over myself with my own car. And yet, there I was, a forty-eight-year-old refugee from my successful career as an advice-giver, a professional know-it-all who actually knew very little about anything that seemed to matter to someone nearing the end of her life, where all of life’s questions seemed to boil down to this: How can I stay?

  That’s me standing on the sidewalk outside the doctor’s office, pushing my hair out of my eyes and trying to lock the car as the wheelchair (with my mother in it) started rolling through a parking lot because I’d forgotten to lock the wheels. All I could do was yell, “Hang on, Mom!” while I ran after her.

  So much of my caretaking was devoted to trying to help Jane maintain her dignity. She kept hers, while I seemed to lose mine. In fact, her dignity didn’t even seem to be in play. She rarely complained about anything and continued to deflect every challenge with little verbal sideswipes. My coping mechanism was to lose it, usually in the supermarket while hunting for a favorite food that my mother probably wouldn’t eat. In her elder years, Jane had become finicky, like a cat. My sisters and I turned ourselves inside out trying to find her favorite foods. When Clark’s Shurfine Food Mart stopped carrying Sara Lee coffee cake, I drove into Ithaca and frantically scanned the freezer sections of the massive Wegmans supermarket. When I finally found it, I bought several packages and e-mailed my sisters to let them know that I had cornered the local supply.

  Much of Jane’s adult life had been one of satisfied solitude. She seemed to love living alone, happily in charge of only herself. Her bills got paid on time, her home was beautiful, and her gardens were exceptional. While she always seemed to welcome company, she was just as happy to say good-bye at the end of a visit. Over the years, my sisters and I had learned to keep our visits short, especially when our kids were in tow. My mother always preferred teenagers. “Toddlers,” she said, “give me a pain.” As her health declined, her little living room always had someone extra in it: the paid caregivers, the visiting nurse, or a neighbor stopping by. Yet I knew what she really wanted was to be left alone.

  Decades ago when I was an associate producer at NBC, I worked on an awful news magazine show that eventually morphed into the truly awful show Dateline. My mother came to New York City on the bus for a short visit, and I pulled out the stops to entertain her. We went to the ballet, and then the next day we went to the Plaza for lunch and to the Oak Room for drinks. Jane didn’t drink, but at the Oak Room she ordered a whiskey sour. I proudly brought her into my office at 30 Rockefeller Center, past the Depression Era murals in the grand black granite lobby and up the Art Deco elevator to my office. My mother and I were in the same movie that day—I was Tippi Hedren and she was Bette Davis, belted securely into her favorite trench coat. My (then) husband and I had just announced that we were moving from New York City to London. Jane, who never expressed an opinion on any matter she considered “personal,” had taken a characteristically completely neutral and noncommittal stance.

  There in the doorway to my office we ran into Connie Chung, the glamorous anchorwoman who hosted our program. I introduced them.

  “JANE!” Connie exclaimed. “We’re losing our girl! She’s moving to London!” Wearing the same intense expression that she would later use on Newt Gingrich’s poor mother, Connie reached down and took my mother’s face in her hands: “How do we feel?! We feel happy. We feel sad. We feel happy-sad. Happy-sad, happy-sad.” Connie seemed capable of yin-yanging this concept into infinity.

  My mother was small. Unprepossessing. She was not used to being touched and emoted over by a willowy Anchor Goddess. The one eyebrow went up. “Yes, that about describes it,” she said.

  Happy-sad. Happy-sad. I pitched assisted-living places to Jane with the enthusiasm of Connie Chung. She batted them right back at me, saying, “I’m fine here.”

  “But you’re not fine here,” I said.

  “You’re doing too much. Just go about your own business and I’ll be fine,” she said.

  My sisters and I tried to pull together and work as a team, but mainly we each played out a version of our distinct temperaments, using our mother as a foil. No one wanted to actually BE in charge (a terrifying responsibility for three women with jobs and children), so we traded off seizing control and then—just before a sisterly eruption—stalked off, slinked off, or merely refused to appear at the house for a while. Then the next sister would step up. We didn’t fight in front of our mother, and we didn’t really fight much with each other, except there was sometimes an underlying air of tension and unexpressed judgment as we silently gauged one another’s competence, which was often found wanting. Then one sister would call another to complain about the third. A week later, the dynamic in the sister triangle would shift, as we more or less took turns sulking on the porch. Sometimes we ga
ve each other a break and complained about other people.

  Our accommodations to try to keep Jane in her house ranged from structural to emotional. When climbing the stairs became impossible, we brought her iron bed from her unheated bedroom upstairs and set it up in front of the fireplace in the living room. When she became too frail to climb into the high bed, Bruno hacksawed the legs down. Various ramps were built. Instead of installing standard hospital handrails (which were too big for her hands to grip), Bruno cleverly attached one-inch metal piping alongside her bed and along the walls of her room and the kitchen; the pipe turned corners and changed elevation and eventually lined much of the interior of the house. It reminded me of the interlocking “Windows Pipes” of the first screen saver on my very first desktop computer.

  We got proficient at delivering basic medical care. A chronic wound infection in her foot required IV antibiotics and daily dressing changes for several months. We strung up the IV bag over the curlicues on a 1930s brass floor lamp next to her comfortable chair. Jane said that her living room, crowded with furniture, two unruly house cats, and now medical equipment, was starting to look like a George Booth cartoon. My brother-in-law Tim and I took turns attaching her to the IV bag, inspecting and cleaning her wound, and changing her dressing. I can barely make a sandwich without inflicting injury, but I got good at this chore. I was Julianna Margulies flicking the air bubble from the IV line. Tap tap tap. I’d snap the plastic tubing and hold it up to the window to check for air bubbles. “Stat!” I commanded before attaching it to her port. Jane looked up at me: “Are we having fun?”

  “No. It’s just what we say. In the healing profession.”

  My mother had always been prickly about her personal space—she wasn’t a hugger or a holder of hands—but I shelved my aversion to foot-touching because now she let me bathe her feet and clip her nails. I rubbed lotion into her sideways-slanted fingers. I brought her out onto her porch in the sunshine, where she let me wash and comb her hair.

  The tasks were so unrelenting and sometimes so strange. The caregiving both upended and reinforced the pecking order in our family, because we were trying not only to take care of our mother, but to please her as well. She raised us using a technique I would call “conditional approval.” Rachel once described this as sort of a “points” system. Like, everybody starts out with all the points, but you lose them as you go. Even though I never remember Jane actually disapproving of anything I ever did, throughout my entire life, here’s the thing: I wanted to keep ALL my points.

  Embroiled in the family dynamic playing out in Jane’s kitchen, I had flashbacks to our childhood summertime gymnastics shows after supper out on the lawn. As the youngest, I had to yell, “LOOK AT ME” the loudest. And in some ways, I was still doing it. I can still feel the sense of righteous satisfaction when my sister and I both brought oranges for our mother—and she ate mine. BAM! I win! Points preserved!

  Even though we developed a basic schedule of multiple people providing care for Jane in her home, there were gaps, and I lived in a state of constant anxiety that Jane would fall through one. As she became more disabled and less able to move safely through her house, she reported having vivid hallucinatory experiences that felt completely real. One morning she told me she was awake all night and didn’t dare move in her bed because she was convinced that my father, Buck, was lying next to her.

  “Oh, did you like that?” I asked in my most annoyingly clinical voice.

  She shot me a look. “Ugh. No. I did NOT like that.”

  And another time: “At six o’clock this morning, I went out to the mailbox, and I saw that [a neighbor] had run over the cat,” she told me.

  “Well, the cat is here. And… um… you can’t walk,” I said, offering an unfortunate backhanded reassurance. “Sounds like a very vivid dream.”

  “I know that’s true, I know you’re right, but even now it doesn’t feel like it was a dream. It feels real—like a memory,” she told me.

  Neighbors helped. Dennis, who lived up the road, appeared out of nowhere and plowed a path over the yard and right up to the front door so we could bypass the longer route to the driveway with the wheelchair. Others popped in, fed the cats, and brought supper. The local pharmacy delivered her medications and supplies. The guy who read all the utility meters in town caught up with me at Clark’s Shurfine Food Mart. He told me that he had driven his truck past her house and didn’t see any of our cars there, so he stopped and pretended to read the gas meter outside the house while he looked in a window to make sure she was all right. (She was.)

  My only relief during this time was to talk to friends who were also facing these depleting duties. I was drawn to my friends’ efforts and capers with their elderly parents, partly because they were not my own.

  My friend Gay drove from Washington, DC, eight hours each way to Pittsburgh every weekend to be with her mother so that her sister could have a break. She took her mother in her wheelchair to Atlantic City whenever possible so her mom could play the slots. Nancy’s mother, who had only shown mild signs of forgetfulness, left the house one morning to drive to the hairdresser around the corner and ended up driving around Washington’s Beltway for thirteen hours before she finally exited. The Maryland County sheriff had to lay out rumble strips to blow out her tires to get her to stop. Several years before that, Nancy’s elderly and ill father had left the house without telling anyone. He took a cab to the airport and somehow ended up kicked off a cruise ship in Bermuda.

  My friend Jean’s father owned a factory in New Jersey. He was wealthy, successful, and in charge of everything. He was always nattily dressed in a suit with a bow tie. Jean had four children of her own and left her newborn baby at home while she nursed her mother in her dying months when her father couldn’t handle it—running back and forth from her own home in suburban New Jersey to her parents’ place. Her husband, Jim, picked up the slack and raised the kids by himself during this almost yearlong daily odyssey. After her mother’s death and when her father’s dementia emerged and worsened, Jean resumed her daily trips back and forth, while trying to convince her father and her brothers that he was too ill to live on his own.

  One night at ten o’clock, Jean’s father called her. He wanted her to bring him an envelope. His instruction was to bring him one white business-sized envelope. Jean weighed her options, the way you do dozens of times a day when you’re trying to balance the scales between the loads you carry. Someone else’s needs and your own needs. Your parents versus your toddlers. Jean decided that she wasn’t going to get in her car and take her dad the envelope. Not this time. This one time she was going to draw a boundary.

  Jean didn’t bring her father the envelope. And then she stayed awake all night, worrying about not bringing him the envelope. “I mean, it’s only an envelope!” she said to me guiltily.

  I know all about that envelope. Only in my case, it was a can of cat food. One tiny, eighty-nine-cent can of cat food. This was the thing I got out of bed for and got in my car to take to my mother late one night. That was the thing that tipped the balance and forced me to say, “Is this really working for us?”

  So I called Jean. “How’s your dad?” I asked. Jean always had a story. And it was always just that much more surreal than my own.

  A few months after the Night of the Envelope, Jean’s eighty-nine-year-old father ended up wandering around New York City at two in the morning. Some police officers helped to get him back to his home in New Jersey. After that, he was moved to a facility that couldn’t handle this once mild-mannered man’s outbursts. Jean was then forced into the heartbreaking decision to commit her father to a hospital’s psych ward until she could find a place for him. Jean’s brother, who didn’t believe their father had dementia, then discharged him from the hospital and took him to a high-rise hotel. Long story short, when the elderly man got up at night to wander and his son ran after him, both men ended up locked outside the hotel room, naked and hiding in a stairwell.

 
; He was moved to several different homes and facilities until the family finally found one that could handle him. He lived there until his death. At the reception after her father’s funeral, Jean gave every guest one of her father’s bow ties. He had hundreds of them. It was a sweet and tangible reminder of the man he had been, before things got so sad.

  My cousin Jan, who moved into my house on Main Street with her husband, Roger, gently nursed him through his final illness this year. Jan sent out text messages every day updating family members on Roger’s condition. At the end of each message, she wrote, We abide.

  We abide. To abide means to stand with someone, to suffer alongside someone. But it also means to live somewhere, and for me, abiding meant to live in that tender and tenuous place of knowing but not knowing. Knowing what would happen but not how it would happen. Knowing it would all end, but not what that ending would be like or how it would feel.

  One winter night, a year before my mother’s death, after a series of harrowing emergency trips to the hospital—always through the snow—I sat with her. Everyone else had gone home. Her living room felt cold and gloomy. I said out loud what we all knew: “We can’t do this anymore.” I told her the only way we could get through the rest of the winter was if she would move and stay elsewhere—at least until spring, when she could come back home if she wanted. As I said this to my mother, I knew it was a lie, but the director of the private nursing facility at the edge of Cornell’s campus had just called to say they had an opening. I had twenty-four hours.

  After so much time spent trying unsuccessfully to persuade and pressure my mother to somehow spontaneously decide to give up her independence and leave her home, finally I became brave enough to take responsibility for making a decision that broke her heart. “This is happening,” I said. And then I abided with her. I stayed with her through her disappointment and uncertainty. I assured her that we would be with her every step of the way, so she wouldn’t be alone. She bravely accepted her reality.