Taking Care

My Uncle Ben is 90 years old—maybe. He isn’t exactly sure anymore, and no one is left to argue that his real age is 89 or 91, or tell those in the next generation the actual date of his birthday. Both Ben and his brother took the Fourth of July as their birth dates when they came here from Russia or Romania—there’s even disagreement about the name of the country they emigrated from, since the borders in that region have changed so often.

Forgetting his age is the least of Ben’s problems. He remembers his two daughters, but not necessarily his sister or brother, or his first wife, though they had been married for 43 years when she died. On a more practical level, he cannot remember where he put his toothpaste, or his shirts. He cannot remember why he has been separated from his second wife, Rose. Every day, dozens of times a day he asks, “Where’s Rose?”

His daughter says, “Rose is in Florida, Dad.”

Why can’t he see her?

Ben’s younger daughter, a patient, soft-spoken woman, says, ‘‘Rose is sick, Dad,” and once again explains why Rose is in Florida and he is thousands of miles away. Ben nods in understanding, and minutes later asks, “Where’s Rose?”

Rose is the one person Ben never forgets—not for a moment it seems. Wife and companion for the last 16 years, it’s as if her presence, her importance, has expanded to fill the void. The world of both the past and present has become treacherous and unfamiliar, and the image of Rose has become gigantic. He is obsessed.

Why isn’t he in Florida with Rose? Because Ben drove her crazy. Literally, says the daughter who lives in Chicago. The daughter in a suburb of New York is dubious, or perhaps too enraged to care about the breakdown of this wife of 16 years, no mother to her. Rose had been complaining a lot about Ben over the last few years, the way he hounded her with the same questions, over and over; how, whatever she told him, he forgot. In the summer of 1993, the calls started: Rose yelling over the line at Ben’s daughters, increasingly agitated; the calls becoming more frequent. They better get their father. She couldn’t live with him anymore. In October the big call came. She was kicking him out. They had to get him immediately or they’d find him on the street. This was absolutely it.

Remember the story that was picked up by every wire service and all the network news: Old-timer abandoned at an airport in his wheelchair, gaunt and unshaven. And to further tug on us and confuse us, the lap blanket tucked carefully over his knees, the adult diapers and teddy bear alongside him. My Uncle Ben strolled off the plane, a fit, bantam-sized gent, with a smile that crinkles up his eyes. Arms around his daughter, happy to see her; getting his luggage, belting himself in the car. Hello, hello.

“Where’s Rose?”

“Rose is in Florida.”

Without time to plan for Ben’s future, the sisters, made hasty, temporary arrangements: The New York son-in-law, who ran a business from his home, would look after Ben until they could think clearly about what was best for their father.

Imagine hearing this for a first time: A 90-year-old man, thrown out of his house by his wife of 16 years. Wandering in his daughters house, a place that has become as unfamiliar as the rest of his landscape. Following whomever he sees. Down in the basement; barging into his granddaughter’s room. Why were they keeping him here? Why wouldn’t they let him go home and be with Rose?

I’m listening to this story from my kitchen in Pittsburgh. The image I have of Ben is from childhood, when he was one of two little look-alike uncles, Ben Tsion, who took the name Sidney, and Dov Baer, who became Ben, both busy taking pictures at family gatherings. One dour as he arranges people: Sit here, move left, bend your head closer, where’s the smile, say cheese; the other edging through the crowd, big smile crinkling up his face, quietly snapping photos. The second one is Ben.

I am no stranger to taking care of people. In the foreground there’s my retarded 10-year-old daughter with problems far more complicated than that single word suggests. In the background: a husband with chronic liver disease, and aging parents who left their home of 40 years and moved to the city where I now live. Like Ben, they are in good physical shape, though my father complains with good reason that the marbles are rattling around in his head.

Even so, I am disgusted by Rose, utterly without sympathy. There are social services in Florida, local programs. Rose is no dummy; she is a woman of experience and education. All right, it’s hard, but to kick him out? Why couldn’t she have asked for help?

My Chicago cousin has no answers, but while scrambling for solutions, she has learned a number of things: In places like Florida, where there are so many elderly people, there’s an abrupt loss of status when one’s mate becomes senile. Instead of getting help or sympathy from friends, people are often dropped, left behind. Perhaps it’s because old age, with all its attendant ailments, looms over everyone like a plague, and as in plague days, the healthy lock their doors to ward off contagion. Or maybe, instead of seeing their health as the luck of the genetic draw, people consider it a kind of superiority, albeit a fragile one that must be closely protected.

But to kick out her husband! What about commitment?

My cousin in Chicago tells me that her fathers story isn’t so uncommon. “Apparently the commitment isn’t always as great in second marriages.”

It’s 6:30 on a December evening, and I’m on the phone to my Chicago cousin, getting an update on Uncle Ben. This is the only time I can make calls because I’m getting dinner ready and, therefore, not fully engaged.

Ben is miserable. They had tried letting him call Rose, but she screamed at him on the phone. So now he is writing her instead, long letters that are eloquent and clear. Love letters, filled with grief.

How could you do this to me? We were in love. My cousin has been looking for day programs for her father, but all he wants is to be with Rose.

Same as every night, my daughter Rachel trails beside me as I roam from counter to sink to stove. She is so close that often I bump or elbow her accidentally Sometimes she is stunned, but neither words nor the memory of her bruises are strong enough to convince her to back up.

My cousin tells me: “When I explain that Rose is sick, he understands completely, but then 10 minutes later he asks me why he can’t be with her.” Rachel murmurs when I murmur, speaks loudly when I raise my voice. My husband thinks she stands on top of us because she’s visually impaired; in my opinion it’s because, among other things, she lacks a sense of personal space.

Where’s Rose?

My daughter says, “I’m hungry, can I have an apple?”

She’s just finished an apple.

We were good together, I loved her. Where’s Rose?

Can I have an apple? I’m hungry, can we have tortellini?

I clutch my daughter by the shoulders to steer her away from me, and, thinking of my own beloved father, say, “It must be awful. I don’t know how you can take it.”

I’m hungry, can I have an apple? Are we having tortellini?

The day programs were for people with Alzheimer’s. When Uncle Ben saw all the people slumped in wheelchairs, or pacing across the room, vacant looks on their faces, he said, “They’re old!” Why did his daughter take him there? He turned away, puzzled and alarmed. These people suffered from the plague of physical disabilities, while Ben was a tough old bird, only, as my father says about himself, his marbles were rattling around.

How could Rose get rid of him, as if he were a vicious dog? How could she be so despicable?

For a long time, whenever I was asked to describe my daughter Rachel, I stressed her sweetness. How different she was from the boy who bit her twice at school, or the girl who pulled a hank of hair out of her head and had to wear a restraining device on the bus because she was, in the jargon of special education, physically disinhibited. No, I would say; my daughter is good natured. Good natured, and completely dependent upon us, from the moment she wakes—and she wakes early—until she is tucked in bed.

Total dependency means not merely that I must help her dress and get her meals, but that she is right beside one of us, most often me, whenever she is home. During the school week, this isn’t so bad. In the morning, she is at her most alert and able, cheerful with the routine: same cereal, medication, seat at the table; same toothbrush, jacket, backpack on the hook, yellow school bus outside at 8 a.m., Flo in the drivers seat, tooting the horn. She is gone until 6 o’clock, when one of us picks her up at a child care center, notable for its inclusion of children like Rachel, and takes her home, where she chants about apples and tortellini, or whatever food she’s locked into that week.

It’s the weekends that are tough. If I am home, wherever I am, third floor to basement, she is an inch away from me, talking, talking, her language perseverative, painfully limited, reminding me of my silent entreaties when she was a baby—Please, oh, please, let her talk. Who knew my most fervent wish would be granted in such an exaggerated way—a daughter who talks ceaselessly, except when she’s asleep? If I want to take a walk with my older daughter, go shopping with her, sit and have a cookie without Rachel’s continual bird-like, in-your-face chatter, I have three choices: Pay for it; bargain with my husband; not do it. I don’t know what other people’s weekends are like, but ours most often begin with negotiating for time and freedom. If you take Rachel Saturday morning, I’ll take her Sunday afternoon. . . . Like that.

And yet, when people, knowing my situation, regard me with mournful eyes, I think: Hey, it’s my life, I’m used to it. I think: Good days and bad days, same as for you. And: There are worse kids, worse situations. The fatigue I sometimes feel is natural and cyclic. True, weekends are tough and school vacations tougher. True, she seems overwhelming at times. But so does the awesome responsibility of watching over my teen-age daughter, and the pile of manuscripts on my desk.

Around the time when Rose evicted Ben, the voice that said, “Hey, its my life,” began to be replaced by a whisper that said, “How much longer can I . . . “ It’s not just the number of years I have already taken care of her—11—or the number of years before she becomes an adult—10. It’s that I’ve gotten tired; I have more people to take care of, and Rachel has become more difficult. My once pleasant daughter has begun to shriek at me, apropos of nothing as far as I can tell. Sometimes she simply says, “I hate you!” and other times, “You have no right to talk to students that way!” I might be examining apples in a supermarket when she yells, “DON’T YOU DARE YELL AT ME.” Or helping her down a flight of stairs, when suddenly, “You’re not the boss!”

It took me a while to understand that the origin of the expressions is unimportant, as are the words themselves. The emotion underlying her yelling is what’s real, an emotion caused by fatigue or frustration. I understand this and try not to take it personally, but try listening to someone—to a recording, a disembodied voice—say, “I hate you!” several hundred times, and the diminishing effect of these words will become clearer.

As I trudge onward with my furious child, I am reminded that I cannot use hugs or sweet talk to jolly her out of her mood. Nor can I fall back on the usual (if regrettable) “If. . . then” statements that parents use as a last resort. In a world of things with the capacity to delight, nothing much delights her—not dolls or stuffed toys or the pictures I hang on the wall of a room decorated to please some child, but not her; not undershirts with hearts on them or trips to the zoo; not me. I cannot tempt her, threaten her, get her to remember simple things. Once I saw myself as the one who knew her best: protector, teacher, expert, but, because my efforts have not come to much, there are times when it feels ridiculous to keep struggling to fit her into our household. Her chatter is so incessant, my own marbles have begun to rattle, too. May I have an apple? Didn’t you just have an apple? Yes. May I have an apple?

Where’s Rose?

How do we placate ourselves during hard times? Things will change. Isn’t that what we say? I imagine my cousins thinking: We will help him. He will get used to it here. Things will get smoother.

As the weeks pass, Ben becomes more miserable at his daughter’s house. More confused, more disoriented. The only program even vaguely appropriate for him meets two days a week until 3 o’clock. The rest of the time, he wanders through the house, barging into rooms, demanding to know why the hell he is there and Rose is not. He has become increasingly hostile. The house is a prison. They are feeding him shit. Where the hell is Rose?

I imagine my cousin switching off the bedside lights, wondering how much longer she can hold out. She loves her father. (I love my daughter.) I can imagine Ben s son-in-law, Richard, prime caregiver of Ben, afraid to even form that question. Richard, born and raised in Argentina, his own parents dead, burst into our extended family with a passionate need to be one of us, not just a relative by marriage. He is an emotional man, the staunchest defender Ben, the one who is angriest at Rose. His sister-in-law has begun to say that Rose had a mental breakdown, and her anger has lessened, but to Richard, family and responsibility are holy words, and Rose cannot be excused for her actions.

I can imagine my cousin, awake at night, thinking: He is my father.

She is my daughter.

If she really hates me? If my parenting is irrelevant, my place in her life unimportant?

This is what you do: You take care of your children and your parents.

At the expense of our emotional needs and our professional goals?

Some would say yes, this is what you do.

At the expense of the others in the family? Some, fewer, perhaps, would say: Caring for those who cannot care for themselves comes first.

At the expense of our physical and mental health?

Richard had a heart attack in January. In between trips to the hospital, his wife drove Ben to LaGuardia Airport, where he got on a flight to Chicago. He stepped off the plane at O’Hare, fit and grinning, and asking about Rose, his problems now in the hands of his older daughter.

For most caregivers, there is heartache, but no cardiac arrest, no clear physical manifestation that allows us to say “enough” and feel certain about our decisions. This is not to say that Richard staged his heart attack as a metaphor for the occasion. No, it was real, and it was clearly stress-related. And now Richard must struggle to prevent further damage to his weakened heart. But there was no question that his heart attack ended his three-month stint as caregiver.

My Chicago cousin found an apartment for her father in a development, where, for a fee, aides help him with whatever he cannot do, or, more often, what he cannot remember to do. Ben’s room is spacious and cheerful, and he has a private bath. For a fee, he is escorted to his meals; for a fee, someone takes him for a walk. To save money, my cousin keeps a list of his activities on her desk at work. Although he is not interested in attending any of them, several times each day she stops work and calls her father to remind him to go downstairs. When I ask if he might make friends she laughs ruefully: He cannot remember on Tuesday the person he met on Monday. It’s a hard condition for friendship.

When my cousin started Ben s phone service, she got him speed dialing to her home, 15 minutes away. He calls her 20 times, day and night, frustrated because he can’t find his toothpaste, or toothbrush, or shirts. There is no phone service to Rose, which is a good thing. He is still enraged, still beginning every conversation with questions about Rose.

I am very far from making a decision about Rachel. The only change is that once I assumed that she would live with us until she was a young adult, and now the word “enough” slips into my head with alarming frequency.

Not long ago, a woman who chose to send her profoundly disabled son to an institution castigated me for short-changing my older daughter and my husband by keeping Rachel at home. As she spoke, I felt my heart seize with alarm and heard myself defend my lovely, defenseless daughter. Not yet! We can still handle things. But two days into a holiday, when she has been stuck to me like Velcro, chanting, chattering, so that I am reminded that I cannot hear my own voice—death to a writer!—I wonder how much longer I can hold out. (it is no accident that this essay took hold as I was driving to the airport to catch a plane to New York, and that at the gate, while all around me babies yowled and adults cursed and rumbled about the delays, I wrote in a frenzy, my head unusually clear.)

Of course, this is the issue that most polarizes parents of special needs kids.

On one side are people like the woman who accused me of expending my energy in the wrong place, and on the other side the ones who say: Tough luck if your career suffers. This is a living, breathing child, your daughter, your responsibility. I ricochet between these sides, bounce off these walls so regularly that when students—young women struggling with relationships and careers, say in breathless awe-stricken tones: You teach! You write! You have a family! How do you do it? I hear myself answer: Badly. This is perceived as a joke, when in fact its how I feel much of the time.

My mother says, “You moved us here!” because she has not seen me in a week.

Rachel hates me.

My husband says, “You’re always running around.”

My older daughter feels that because I worry more about Rachel, I love her more, a formula that is utterly untrue. Just when I feel as if I can explain this to her, and have her believe it, a friend who grew up with a retarded sister and moved oceans and continents away from her family, tells me that Charlotte will grow up and never come home. It will be too painful for her to confront what she left behind.

That makes me cry. Even so, I’m not sure what will shake the bonds enough for me to say “Enough.” Sometimes I think it will be hearing Rachel say, “I hate you” for the millionth time. Sometimes the knowledge that, if I fell through a gaping hole, she wouldn’t miss me much. Or perhaps circumstance will change things for me, the way it changed things in Ben’s family My husband is ill; my daughter is spreading her wings.

When Richard looks back to the time he took care of Ben, he says, “I don’t know how Rose could stand it for so many years.” A far cry from his rage at her abandonment. “In just three months, he gave me a heart attack!”

On that trip to New York, I tried to imagine a time when Rachel would be living away from home, tried to drum up a feeling of relief or pleasure, to shape a memory of reading a newspaper in peace. But I find myself imagining my years without her as a little fable:

Once upon a time there was a woman named Jane who took care of a lot of people. Many years passed, and soon, one by one, everyone was gone. So Jane lived all alone for the rest of her life. The end.

About the Author

Jane Bernstein

Jane Bernstein’s most recent books include the memoirs Bereft: A Sister’s Story and Rachel in the World. She is also an essayist, a lapsed screenwriter, and a member of the Creative Writing Program at Carnegie Mellon University.

View Essays