The Agony of Putting Your Life on Hold to Care for Your Parents - The New York Times
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Randi Schofield tried her best to not dwell on all the ways her life changed, on the pieces of herself that got lost in the shuffle. She was a 34-year-old single mother who, not long ago, was in the throes of a big life transition. She had left her full-time job of eight years as a personal bailiff to a local judge. She was burned out, ready for something new.
She pulled $30,000 from her retirement savings and was planning to give herself all of 2022 to expand the small catering business she had always dreamed about. This would be the year she bet on herself. It was risky, but she had a plan. She applied for part-time, remote office jobs so she could keep up with the bills, maybe save up for a summer vacation with her two daughters, Alicia, then 13, and Amira, who was 15. She felt guilty for having spent so much of her time working at the courthouse or on-call by her laptop. She started going to bed early and updated her budget every two weeks. She got the girls ready to begin the spring semester feeling like a new person. Then, in late January 2022, she received the news that medics were pulling her father out of his car.
Randi's father, Keith Schofield, then 61, had been driving home from the gym after a snowstorm when a car in the next lane lost control and sent Keith's Chevy over a Cleveland freeway overpass. The collision splintered the bone in his left thigh down to his knee; three days later, a metal rod held the broken pieces together. Until his leg recovered from the surgery, he would not be able to walk without assistance.
In hindsight, there were warning signs that her father's health could upend Randi's life — the heart episodes that landed him in the emergency room almost every year; the tray full of open medicine bottles that he swore he took on time. But he was also youthful and spirited, and it was easy to believe that everything was fine, that he was fine and that if she were to take care of him some day, it would be occasional and in a distant future where she had more of life figured out. She didn't see this day coming the way it did, so abruptly and so soon.
Yet increasing numbers of adult children are taking care of their parents, often shouldering the burden with no pay and little outside help — making their meals, helping them shower, bandaging their wounds and holding them up before they can fall. (The number of people living in nursing homes or assisted-living facilities make up less than 5 percent of the population 65 and older.) In its most recent survey of unpaid caregivers, published in 2020, AARP found that there were nearly 42 million people caring for an aging friend or family member — more than tenfold the number in 1989. The fastest growth is happening among younger generations; the share of caregivers who are under 45 quintupled over the past two decades, to nearly 66 percent from 16 percent, as their parents — many of the 72 million baby boomers — are living longer but doing so with more chronic diseases and disability and less means than the generation before them.
"I always knew it would happen," says Adrienne Glusman, who, at 29, took care of her mother in the final decade of her life and now hosts the podcast "Young Life Interrupted." "But it happened 30 years sooner for me than I ever anticipated." And since the pandemic, as caregivers available for hire became rarer and impossibly expensive, the estimated number of unpaid family members who have stepped in nearly doubled: The Centers for Disease Control and Prevention reported in early 2021 that 34.1 percent of Americans 18 and older are either caring for an adult or juggling the care of both adults and children; in another poll, 60 percent of first-time caregivers were millennials or Gen Z.
An unprecedented number of people in their 30s (and to a lesser degree, 20s) are entering what the social-work scholar Dorothy A. Miller once called a "peculiar position" in the modern American nuclear family, between the care they give to their aging parent and to their children. Today's "sandwich generation" is younger than the version Miller described four decades ago, but they face the same "unique set of unshared stresses" that she warned of then: acute financial strain, a lack of reciprocated support and "fatigue from fulfilling the demands of too many roles."
Following her father's accident, Randi postponed the start date of her new part-time, remote office job so she could look after him as he recovered from surgery in the intensive-care unit. For weeks, she held his hand and prayed. In March, when her father left an outpatient rehab center and moved in with her, she pushed back the start date of the part-time job again. Randi, her sisters and brother-in-law moved most of the furniture out of her room to make space for an extra-wide hospital bed, a leather recliner and a commode. Randi took over Alicia's bedroom across the narrow hall. At night, she could hear the hissing of her father's oxygen tank in one room and her daughters bickering over their shared space in the other.
Randi's days filled up with a series of small but life-dependent tasks — emptying her father's portable toilet and urinals every few hours; handing him a shot glass of medications (8 a.m., 4 p.m., 8 p.m.); measuring his blood pressure (morning and night); driving him to and from doctor's appointments (at least twice per week). The trauma of her father's leg injury accelerated his chronic heart-and-kidney disease, causing his body to retain water, which meant he could have only six cups of fluid a day. Randi kept a log of how much he drank and urinated in a red spiral-bound notebook.
The time she once planned for herself disappeared. Her aspirations faded. She eventually gave up the job offer entirely and shut down the website for her catering business. The unemployment benefits she started receiving after leaving the courthouse job barely covered the basics — after her mortgage, property tax, car payment, insurance, water, gas and garbage bills, only $100 remained — and soon, those checks would run out, too.
The savings Randi pulled from retirement after quitting her job were supposed to last her into the next year, so she watched her spending carefully. But there were unforeseen necessities — repairs for the furnace, for one — and after her father moved in, the list grew: compression socks to help his blood circulation; a shower bench; nitrile gloves; trash bags for the portable toilet; Lysol wipes; extra-strength Tylenol. Amira was accepted into summer programs at Brown and then Howard, which made Randi proud but also stressed, because it meant she needed to buy round-trip flights and a few nights in a hotel. She stopped paying her bills on the first of the month, as she was used to doing. Instead she leaned on grace periods, paying the minimum balance to avoid triggering a late penalty.
Keith was a youth basketball coach and worked as a county social worker for 13 years. Two years before the accident, he retired and received $2,000 each month from his public-employee pension, part of which paid for his rent (he insisted that he would return to his one-bedroom apartment as soon as his leg recovered). The benefits put Keith over the income limit required to receive federal financial assistance for long-term in-home care, which could essentially pay Randi a minimum wage for looking after him.
Most American households make too little to afford a hired caregiver or a bed in a nursing home, the median costs of which are about $3,000 and $8,500 a month, respectively. Yet most Americans also make too much to qualify for the public benefits that exist for this very reason. The price of long-term care, meanwhile, has risen for nearly two decades in a row. In 2019, the average cost of in-home care for one year equaled 80 percent of the median household income for seniors; a year in a nursing home cost more than two times the median income. The result is a kind of generational compounding effect for family caregivers inheriting the financial burdens of their parents while facing their own precarious future.
In AARP's survey, about a quarter of family caregivers reported that they stopped saving or that they went deeper into debt; nearly a fifth reported they paid bills late or stopped paying altogether; 3 percent filed for bankruptcy. Millennials, according to a 2018 AARP report, spent a higher share of their incomes on caregiving than previous generations while earning less on average. A majority juggled a full-time job with their care duties and earned less than $50,000 per year. They were also more likely to receive warnings from employers about performance or attendance, turn down promotions, quit or be fired.
Amy Goyer, an author and an expert on caregiving for AARP, decided to move in with her parents in 2012 when they required 24-hour attention and could no longer afford their mounting medical and living expenses. They had been paying $4,000 per month at an independent-living community and a mortgage on the house they bought in the 1980s, which drained her father's pension and the Social Security that both parents received. Her sisters helped out, but Goyer absorbed most of the work and expenses. She maxed out her credit cards. She hired help during the day so she could continue her full-time job and took over on nights and weekends. "I provided 60 to 80 hours a week of care myself, and it was still so expensive," Goyer said. After her parents died, Goyer filed for bankruptcy.
According to AARP's latest data, Goyer said, one in three caregivers has no other help. "How are they doing that?" she asked. "They're either not working or they're just about killing themselves."
Randi was not, strictly speaking, alone. Early in her father's recovery, her mother and two younger sisters were hands-on, coming over several times a week to drop off food, help him practice walking or take the girls to the mall. (Randi's parents divorced when she was a teenager but remained close.) On a few occasions, when her father was still in the hospital, they even took turns filling in for Randi overnight so that she could catch up on sleep. Their group thread buzzed with inspirational quotes and memes and schedules and eye rolls over Keith's refusing to take his medicine when they asked him to.
Gradually, though, the visits and texts slowed. A series of disagreements distanced Randi from her mother and sisters. Randi's mother told me that one of their first arguments started when Keith was still in the hospital. She worried that taking care of him would overwhelm Randi and felt that he should instead be looked after by medical professionals while the family helped. But Randi refused. During her father's brief stay in the rehab facility, she said staff members failed to treat his fluid retention, which ultimately resulted in another trip to the hospital. When Randi's mother learned that Keith was in a relationship, she no longer felt it was her place to be by his side.
Keith's girlfriend, Jackie Davila, a former nursing-home administrator, dropped in regularly to help him shower and accompany him to doctors' appointments. She and Randi moved in sync when helping Keith to and from the car. But Jackie's support could feel fragile at times. She juggled a full-time job managing cancer patients and also checked in on her own ailing family members. On nights when she left after an argument with Keith, Randi could only hope she would return before too much time passed.
Randi also had a boyfriend, DeMonta Cummings, who was 28 and worked as a truck driver. On his days off, he came over with his 8-year-old son, an expressive, inquisitive third grader, to watch football with Keith or take the girls shopping. The girls lit up when they were around. When Big DeMonta was on the road, Little DeMonta sometimes stayed with Randi for a week or more.
In a pioneering study of adult-children caregivers, the social worker Elaine Brody found that in every family in which an aging parent required care, there was usually one "burden bearer" — a single member who bore the brunt of the responsibilities, even when there were, in theory, others who could help. "This phenomenon appears with striking regularity and frequency," Brody co-wrote in the journal, Family Process, in 1966.
The burden bearer could be patient and self-sacrificing but also bitter. About one in three caregivers reported their relationships with siblings deteriorated. Those who lived with their parents experienced more stress — "problems may be more exacerbated if the home is small or ill equipped for care, resulting in crowding or loss of privacy." Daughters, Brody found, were more likely to report symptoms of depression, restlessness and feelings of isolation and missing out. In a later study of sandwiched caregivers with siblings, published in 2003, two-thirds reported an "inequitable" spread of labor and "feeling considerable distress" as a result. One woman told researchers that her sisters helped somewhat — one flew in for a week out of the year, and the other helped with finances — "but there are still times when it just pisses me off royally." Women remain the majority of family caregivers today, although among millennials, the share of men is closer to half.
Two months after Keith moved in with Randi, his ankles swelled like water balloons — a common side effect of a heart that doesn't pump hard enough and a kidney that is malfunctioning. Randi took him to the hospital, where he was hooked up to an IV drip of a diuretic to drain the fluid out of his body. That week, a heart-failure specialist delivered some sobering news: Without a major intervention, Keith might only have six months to a year left to live. The doctor recommended a cardiac ablation — a procedure in which a surgeon burns scar tissue in your heart to block irregular electrical signals. If it succeeded and his arrhythmia improved, the doctor would recommend him for a heart-and-kidney transplant.
At the next family cookout, Randi snapped at her youngest sister for not helping their father move inside when it began to rain. Everyone started arguing. Randi cursed out her mother and sisters and stormed out. The tension festered. One day, Randi walked by her father's room and overheard him telling someone on the phone that his other daughters didn't come around as much because they couldn't stand to see him sick. Did he think that she enjoyed seeing him sick, watching him every morning slumped in his recliner, waiting for his chest to rise?
Randi resented how the rift in the family made her daughters feel like collateral damage. She blamed herself, too. She was so occupied with her father's recovery and keeping up with bills that she hadn't taken the girls to a movie or the mall in months. She knew they were trying their best to adapt. Amira often stuck around the kitchen, asking if Randi needed any help. Alicia withdrew to her bed and into her phone.
As the heart procedure approached, Randi tried to be optimistic, but she had so many questions. What were the chances it would succeed? When could he start physical therapy again? She wrote them in her red notebook and took it to a meeting with her father's cardiologist, but her father stopped her before she could ask. Randi knew he was probably anxious about the risks. But she felt she deserved some answers. Would the doctors' appointments slow down or speed up? When could she start looking for work? She needed to start saving again soon. In the spring, she would have to take Amira to visit colleges. How much longer would she be on call?
That summer, as the bills stacked up, Randi and DeMonta decided to move in together. There was barely enough space for two more in the house, but it was hard to ignore the upsides of splitting the bills. He became the one person she could share her unfiltered thoughts with: about the sense that her life was on permanent pause, that she was wasting away; the doubt and guilt and anger that weighed her down.
Keith made it through the procedure, but his recovery was slow and unsteady. His weight could climb nine pounds in two days, a sign that his body could be retaining water, then drop below his normal range, a sign that his kidneys could be failing. Randi felt uneasy each time she left him alone in the house. She kept the front door unlocked in case someone needed to get inside: a neighbor; Jackie; paramedics.
The days were relentless and disjointed. Now with three children in school and on different schedules, Randi drove between two and three hours every weekday. Big DeMonta started a new job trucking long-distance, which paid more but required him to be away for most of the week. Numbers and to-do lists ran through Randi's mind; at night, she had trouble sleeping. Relatives and friends cheered her on, saying things like, "I don't know how you do it, Randi" and "I'm praying for you, Randi." She appreciated the sentiment, but she didn't want sympathy. She wanted someone to take her place.
She didn't always notice her mood dip, until one of the children picked up on her impatient tone. "Why did you say it like that?" Little DeMonta asked her one time. Often, she pulled into her driveway after school drop-offs or errands and just sat there, the engine still running. More than once, she walked out of her house and hid behind her car, crying out of sight, until Amira came out looking for her.
Of all the challenges that a family caregiver faces, the emotional toll has been consistently documented as the most pervasive and severe. A widely cited review of 30 empirical studies published between 1985 and 1998 found that the risk of psychiatric morbidity was high among caregivers, especially for women. More recent studies have found that caregiver distress and depression were often followed by changes in physical health "that ultimately lead to illness and possibly to death," though the precise causes were unclear. The 2021 C.D.C. survey of more than 10,000 family caregivers found more troubling trends. About 70 percent of respondents said that they experienced adverse mental-health symptoms within the previous month, including anxiety, depression or suicidal ideation. Among people who cared for both their children and parents, about half reported experiencing suicidal thoughts.
Randi's own breakdowns began six months after her father moved in. One weary night in September, she waited until everyone had gone to bed, then sneaked out to her car and drove away. She called DeMonta and told him she couldn't be there anymore, that she worried she would become a danger to herself and others. DeMonta called several family members and the police. Then he, Jackie and Randi's middle sister, Megan Crespo, rushed to the house.
They had a right to panic; at 21, Randi was diagnosed with bipolar disorder and checked into a hospital several times after her daughters were born. It had been years since her last breakdown — therapy and meditation were helping her manage her mental health. She was sorry for alarming everyone that day in September, but she knew it would be worse to hold in what she felt: She did not want to live this life anymore. She had been sitting outside her father's apartment for what felt like 10 minutes when Amira called, worried about her and the officers knocking at the door. The police were gone by the time Randi returned home. A few weeks later, Megan called the police again. Two officers pulled up to find Randi sitting in her car, sobbing.
She tried not to, but Randi thought often about how this chapter of her life might end. In the best but least probable scenario, her father would recover and go home. Perhaps she would go back to school and become a nurse, turn all this new knowledge into a job. Maybe, in a few years, after the girls left for college, she would sell the house and leave Cleveland, just her and the DeMontas, somewhere warm by the water. In these daydreams, she found a fleeting semblance of escape, of possibility but also of guilt for imagining a future without her father. If, God forbid, he was to die, she wanted to mourn him without resentment.
By January, one year after the accident, Randi applied for part-time jobs again. And she enrolled in a local nursing program. Her father's recovery stagnated. A second leg surgery helped him avoid an infection, but he was weaker than ever and lost nearly 20 pounds. That month, Randi broke down again. Alicia texted her grandmother to say Randi needed her. The next day, Randi's mother came over. They talked for a while. She also had some news: She was recently diagnosed with Stage 1 breast cancer. They caught it early, thankfully. She was heading to see the doctor that week to find out her treatment plan. Randi decided to go with her. Her mother would need daily radiation and eventually hormone therapy, but she was well enough to manage on her own, at least for now.
Jaeah Lee is a contributing writer for the magazine and a recipient of the American Mosaic Journalism Prize. She previously wrote about the killing of Vicha Ratanapakdee and the movement against anti-Asian hate. Haruka Sakaguchi is a photographer in New York known for her documentary work focusing on cultural identity and intergenerational trauma. She is currently working on a project about the incarceration of Japanese Americans during World War II.
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