“How’s your dad doing?” “How’s your mom doing?” These are standard inquiries now, the cores of conversations between my middle-aged friends and me. For we are the “adult children” (uncomfortably existential oxymoron) of aging parents. Many of our mothers and fathers are ailing in some way these days, suffering, beginning a slow downward-spiraling descent. We watch their pain and confusion, desperate to help but unsure how. They are frightened, frustrated, angry, embarrassed. We watch their mental and/or physical faltering with compassion and concern, wishing we could solve this unsolvable thing for them. We take their burden upon ourselves in loving, caring gratitude for how they once parented us. The parent becomes the child, the child becomes the parent; we understand this is the universal cycle of life, this turnaround in who-helps-whom across the street, yet we are still surprised how it seems to upend the natural balance of things. We want our parents to live forever; we are ashamed to feel growing resentment as their dependency, and our duty to care for them, increases each day. Meanwhile, what to do with the parent who desperately needs our help, yet refuses it? And what do we do with our own guilty, selfish relief each day we are not called upon to help more, to take on the full responsibility for our parents’ lives?

“Why don’t we revere the elderly?” wonders Molly, the adult daughter of aging, ailing parents Aaron and Joy Bergman in Cathleen Schine’s They May Not Mean To, But They Do, a compelling, sensitive portrait of a loving New York family caught up and reeling in that inexorable cycle of life. But Molly, struggling to help with the physical, emotional, logistical, and financial needs of her parents from faraway California, knows why: “they were difficult and inconvenient.” Molly’s brother Daniel, geographically closer to their parents but less engaged, precariously balancing a busy job, a wife, and two little girls, is also grappling with their parents’ deterioration. “I don’t want them to be old,” he says to Molly, bemoaning his own emotional unmooring, but they agree that the “alternative” — the dark joke of putting pillows over their parents’ faces, ha — is untenable. “We would miss them too much.” Molly’s wife Frankie is trying to be supportive while dealing with her own father’s hypersexual mischief making in an assisted-living home, and her twentysomething son Ben is getting his first experience with an upending world; on the train home from a disastrous family holiday with his distraught grandmother Joy, he:

sensed that she had started to cry and he turned away, staring out the window at the weedy cliffs rushing by. Then he turned back and wrapped her in his arms and let her weep against his chest. He wondered if this was what it meant to be an adult, to be on the other side of the tantrum.

Schine gives Molly and Daniel, their partners and children, plenty of room to struggle with their own angers, frustrations, and fears, allowing them the authentic and vast range of emotions, from selfless love and concern to ignoble self-absorption and back again. But the heart of the story is Joy, the matriarch, whose husband Aaron is retreating further into dementia while dying a lingering, messy death. The first half of the novel details Joy’s die-hard commitment to her imperfect but beloved husband and partner of 50-plus years, her determination to take care of him herself, at home, despite the relentless strain of caregiving and her own increasing physical and mental fragility. She watches over her husband, “gazing at him with the love of decades past and the angry exhaustion of a sleepless night and the terror of the days and nights to come. I dare not think that way, she said to herself. I dare not.”

Her life becomes an endless, numbing round of pills, procedures, doctors’ reports, changing colostomy bags, visits from her preoccupied but well-meaning children and grandchildren that are both too brief and endless. She sees her own life, her own self, slipping away with Aaron, and is torn between self-preservation and a longing to join him in the looming nonexistence: “Sometimes she wanted to put her hands around his neck and squeeze the last lingering pretense of life out of him. More often, she wanted to bury not him but herself — bury herself in her down duvet and never show her face again.” At his bedside, holding his hand, her helplessness in the face of his painful demise is heartbreaking:

“There there,” she said. A useless, irrelevant comment. “There there,” she said again. Not every comment had to be useful or relevant. Some words were useless, irrelevant, words that meant I’m sorry, I’m so sorry, I wish I could help you, I love you and I have for so many years that I even love you when I don’t; words that meant I didn’t mean it when I said I was going to put a bag over your head if you asked me one more time where your ice cream was when it was right in front of you. “There, there,” she said.

In the moments after his death, she feels confused — what has happened to this man she loves so deeply? How to respond to Aaron’s lifeless body, to the pronouncement of rigor mortis by the hospice nurse?

Death? How could anyone be sure of something as unlikely as death? Death made no sense. Where was Aaron if not there? Who was that if not Aaron? Why were the children filing in to say goodbyes as if he were about to take a journey on an ocean liner? She sat on the edge of the bed where she and Aaron had slept and looked at the silent, still man in the hospital bed. Who would take care of him now that he was dead? Who would get him his tea and see him sneak three spoons of sugar into it and pretend not to notice? Who would make him wear his hearing aids? Who would buy him warm sweaters? He would be so helpless and so alone now that he was dead and she could no longer look after him.

As long as Aaron was alive, Joy had a purpose, a place to be and a reason to live. But the bedrock of her life has turned to shifting sands; in the second half of the novel, Joy must now figure out how to live the rest of her life in a hitherto inconceivable state of solitude and purposelessness, disoriented and feeling whatever defined her sense of “home” has vanished:

She wiped up the dog pee. She mourned her husband. She mourned her life, which seemed so far away, lost in time. She longed for her daughter and her son, the sounds of their voices, the strength of their arms, and the loving condescension of their hearts. She longed for Aaron. She didn’t seem to belong anywhere anymore.

At night she paces the empty apartment, listening to sirens, taking her own pulse, weeping and waiting … for something. But what is there, what is left? She nibbles at takeout food, let’s mail pile up on the dining room table, neglects her own health and appearance, and tries to refocus her energy on herself:

Joy began to feel there was another person in the apartment, a stranger, and it was her. She had to watch over this person, this boring, fearful, sickly person. She had to make sure it took its pills. She had to watch its step so it didn’t fall. She made sure it chewed its food so it didn’t choke. She worried about the person constantly; the worry was a heavy weight on her shoulders, on her mind, on her heart. It followed her as she followed this person from room to room, this awful, needy person who was herself.

Because there is a new worry, a new fear: What will become of her? Aaron had her, at least, to protect whatever was left of his dignity, and in looking after him she was also able to assert her own value, her autonomy. But who can she trust, truly trust, to look after her in that similar way? To allow her the dignity of self-determination?

She wondered what her children would do if she did get pneumonia. Put her in a home? Just until you get better, for your own good. What if they decided to leave her there, for her own good? The thought kept her up that night and woke her up many nights after. They had never said anything about sending her off to an assisted-living place. They couldn’t send her against her will. They wouldn’t send her anywhere against her will! And she didn’t even have pneumonia! She told herself these things. But you never know. That was one thing she had learned over the years. You really never know anything.

Molly and Daniel are flummoxed by her intransigence in rejecting what appeared to be perfectly reasonable solutions and/or options: Assisted living? Selling the upstate family cabin? Moving out to California? And so Joy, in fact, does have a new purpose in life — to convince her adult children she is fine, just fine, thank you very much, to resist their well-meaning efforts to “help” her. “I don’t want to be a burden,” she tells herself, and them, that generic protestation all aging people seem to meekly murmur at some point, but …

she did worry about her own situation. She did not want her children to send her away to a home. If she became weak enough … well, stranger things had happened. They watched her like hawks to make sure she was okay, and like a field mouse she scuttled and hid. Yes, I’m doing quite well, she would say. Nothing to report. They seemed to believe her. […] They told her she was a good sport.

Joy watches her words when she speaks to her children, knowing “they spoke to each other about her. She didn’t like it, but she didn’t want to know what it was about, either, because she already did: it was about what to do with her.” She is always on guard with them, now, tries “to monitor her voice and conversation, to weed out any petulance and grievance of tone.” She is worn out by the constant need to dissemble, and self-protect.

But Joy is not doing “okay”; her health and mental acuity are faltering, her money is going to run out, and we, along with her children, are right to fear for her well-being. But Schine achieves a haunting poignancy — and a refreshing lack of sentimentality — in making us understand how even the most well-meaning offers or suggestions or coaxings to accept “help” can, in fact, be perceived as a credible threat. “Joy tried to smile appreciatively. She must stop complaining or she’d end up with yet another change of scenery, she thought, the parking lot out of a nursing home window.” To seem fragile, or helpless, can be dangerous; we risk being warehoused, infantilized, stripped of that dignity we fight for and treasure until the end.

But there is a possible third act escape, or reprieve: enter Karl, a long-ago suitor of Joy’s, now an equally aging gentleman of means, who reappears in Joy’s life with an offer of well-financed security and companionship in these, their final, golden years. Joy is tempted, of course.

Living with Karl. What would that mean? The end of loneliness? The echo of another person’s footsteps in the house. Someone to pretend to listen to you as you read out loud from the newspaper, with whom to discuss what to have for dinner, someone with whom to chat about the weather, someone with whom to share a life. […] She wondered what Aaron would think when she told him. But she could not tell him. Aaron, Aaron, how can I know what I feel without you here?

When she finally floats the existence of Karl to Molly and Daniel, asking to bring this “friend” of hers to her granddaughter’s bat mitzvah, Molly and Daniel react with selfish displeasure; unaware of Karl’s financial security, they worry about this possible threat to their mother’s limited resources (and by extension, their own). But this concern is cloaked in indignant anger at this betrayal of their father’s memory, which infuriates Joy:

Her children were behaving like children. They should be happy she had a new friend. She hadn’t mentioned Karl’s proposal that the two of them live together, but even that should make her children happy. Would they prefer she be sent off to a nursing home, by then? […] Molly and Danny were probably worried about their inheritance, that’s what it was. She was doomed to rot on a urine-stained sofa like Mrs. Astor. Except there was no inheritance. Except the house. Which they wanted to sell. Where she no longer belonged.

She doesn’t bother to reassure them of Karl’s wealth, instead asserting her right to make her own decisions, her refusal to be infantilized. And she walks the walk, allowing Karl to regard them as “engaged,” but without the obligations or disorientations of co-habitation. Wisely, Schine doesn’t deus ex machina Karl into Joy’s life; he doesn’t “solve” anything, because Joy’s life, at this stage of life, is, indeed, “unsolvable” — it is simply a life to be lived, like any other, on her own terms and for however long it lasts, under whatever circumstances may arise.

We “adult children” can empathize with Molly and Daniel, but we are all, in fact, Joy — every one of us will be aging someday, or an illness or accident away from being launched into that precarious tension between dependency and self-determination. “No one really understands this particular abyss,” Joy says, but Schine’s painfully beautiful depiction of a woman’s heroism in the face of that abyss offers, like the best literature, a reminder of the tender, frightening vulnerability we all share.

¤

Tara Ison is the author, most recently, of the short story collection Ball and the essay collection Reeling Through Life: How I Learned to Live, Love, and Die at the Movies.