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From New Yorker

From Vox

Does anyone know how to recycle makeup packaging without having to go through each individual brand? I’ve been doing a ton of research and the only one I can find is Garnier’s TerraCycle program but they’re full and put me on a waitlist??? I just want to help save the planet damn pic.twitter.com/RRfRO7PS7t

— Sarah McGonagall (@gothspiderbitch) November 14, 2019

TerraCycle’s Hungarian-born founder Tom Szaky looks like your typical hippie entrepreneur, with shaggy brown hair and a beard. We spoke over Zoom, him beaming in from a large office space lined with curtains made of empty plastic water bottles. He founded TerraCycle in 2001 while a first-year student at Princeton. At first, he collected food waste and sold the compost to local businesses. Later he pivoted to processing packaging, and in 2007 got his first brand partners — Honest Tea, Stonyfield Farm, and Clif Bar — which paid TerraCycle to set up collection points for their packaging. Since then, TerraCycle has expanded globally and has partnered with more than 500 brands for all sorts of stuff, including Teva for its sandals and both Hasbro and Mattel for their toys.

The business world is ready for a solution to plastic waste. With factoids like “By 2050, our oceans will have more plastic than fish,” videos of marine life being strangled, and news stories about dead whales full of plastic zinging around the internet, companies have been under increasing pressure from consumers and governments to do something about the global plastic pollution problem.

Szaky’s pitch is that our recycling system is broken. Because it’s increasingly labor intensive to recycle our complicated modern packaging, and because China stopped accepting most waste from the US in 2018, it has become less and less profitable to collect and recycle disposable products. Many municipalities are finding they can’t afford to do anything but throw it all in the landfill or incinerate it.

Szaky’s solution is to get corporations and consumers to pay for it.

Here’s how it works: Once corporations partner with TerraCycle and pay a fee (the cost of which neither TerraCycle nor its partners have revealed), they can tell consumers on their websites and on their packaging that it is recyclable through TerraCycle. Consumers, schools, and businesses are encouraged to sign up for each free recycling program separately at TerraCycle’s website. For each program they are approved for, they receive a shipping label or collection container. They fill it with the specified waste from the sponsoring brand and send it in for recycling. Some brands send a few cents per item to charity as an incentive.

TerraCycle then pays plastic manufacturers in the US to recycle these products. Szaky says the wrappers, for example, are melted down and extruded into a copolymer that TerraCycle then sells to American manufacturers of products like garbage cans, Frisbees, benches, and shipping pallets — bulky things that don’t need precision-molded, high-quality virgin plastic. (Though many would consider this downcycling, not recycling.) It was in the negative by $1.1 million in 2020 on this part of its business.

Participating in a TerraCycle recycling program is not that easy, though. To recycle your used Honest Kids drink pouches or K-Y Jelly tubes for free, you have to either find a local drop-off site (which might be too far away) or sign up to receive mailing materials at TerraCycle’s website (an option that often involves a months- long waitlist).

If you can get a shipping label, you then need to save up, clean, and separate your spent packaging and take it to UPS to be shipped off to the company’s warehouse in New Jersey. TerraCycle encourages you to wait until you have a certain weight of trash to send off, to keep the emissions of shipping down. So, you need to either go through a lot of K-Y Jelly, for example, or find other people passionate enough about plastic waste to save their tubes and give them all to you.

Szaky defends TerraCycle’s limits by saying that it gives access to recycling to all consumers who want to recycle items and make the effort to do so. But for some programs, like Gillette razor blades, there aren’t even public drop-off locations in Brooklyn, one of the most dense (and self-consciously sustainable) areas in the US — everything is registered at apartment addresses. Szaky says the lack of locations is because Gillette’s program is only a year old and that not enough people have signed up to set up collection points yet. But that again puts the onus on consumers instead of Gillette to set up and run collection points on their own time. Gillette’s program is really only “free” if you consider everyone’s time and labor worthless.

If TerraCycle’s free, corporate- sponsored program isn’t available for a given product, TerraCycle will sell you a container that you can fill according to the box’s theme — toys, hair salon waste, and kitchen waste are a few of the dozens of categories — and ship to TerraCycle. If you want to keep going, you then need to buy another box. These boxes are not cheap. The bestselling small all-in-one box, which will take pretty much anything and measures 11 x 11 x 20 inches, costs $199 — prohibitively expensive for all but the most privileged and committed consumers.

And yet, consumer boxes count for a not-insignificant part of TerraCycle’s revenue. In 2020, according to TerraCycle’s financial filing in preparation for a potential IPO, its US division generated $25 million in net sales, $7.5 million of which came from its boxes. $10.5 million came from the more than 45 partnering brands listed on TerraCycle’s site, which means each company is spending what amounts to less than a rounding error of their operations.

TerraCycle has a similarly itsy- bitsy recycling volume. Szaky told Vox that TerraCycle, on average, collects 217 tons of waste per month through its mail-in program from the entire continental United States. The small town of Mamaroneck, New York, recycles more than that in a year. New York City alone produces 12,000 tons of waste per day.

Even for specific categories, the waste collected is so vanishingly small as to be almost negligible. Szaky says TerraCycle has recycled 370,000 Bic pens this year. That’s a big number, but it amounts to recycling just 0.0002 percent of the estimated 1.6 billion ballpoint pens thrown out in the US every year. Two-hundredths of a percent is not technically nothing. But it is close.

This minuscule investment by corporations seems to be more of a marketing ploy than pointing to an actual shift in their operations. In other words, corporations seem to be paying TerraCycle to help them greenwash, whether Szaky knows it or not. A 2020 report by the Changing Markets Foundation claimed the largest conglomerates in the world, including Coca-Cola, Nestlé, and Colgate-Palmolive, make voluntary pledges and support small take-back schemes as a tactic to take the air out of anti-plastic movements.

TerraCycle is frequently mentioned in the report as the tool corporations use to make it look like they’re moving toward reusable and recyclable containers, while at the same time they aggressively lobby against anti-plastic legislation. For example, the report says Coca-Cola, PepsiCo, Nestlé, and Tetra Pak spent between €300,000 and €1.2 million in 2018 lobbying against the European Union’s Single-Use Plastic Directive. (This lobbying effort failed; the SUP Directive became EU law just a few weeks ago.)

Szaky has aligned himself with the interests of these big businesses. “It’s much better to focus on and empathize with their goals — whether you agree with them or not, frankly,” Szaky said in an interview this past May. “Even if it’s as uninspired as ‘I want to sell more stuff.’”

He also has said that, because companies pay for TerraCycle’s recycling programs, they are “even more motivated” to improve the design so they can cut the cost of TerraCycle’s recycling program, and that TerraCycle often provides consulting services to brands that want to make their packaging more frequently recyclable. Gerber, with the help of TerraCycle’s feedback, made its squeeze pouches easier and less expensive for TerraCycle to process. These squeeze packs are not yet, however, curbside recyclable.

The question remains: If corporations can set a low cut-off point for how much they will pay for each recycling program (the largest programs are in the seven figures, which is hilariously small for a global behemoth like Nestlé, which made $13.49 billion in profit in 2020, how are they incentivized to do anything more than the bare minimum?

TerraCycle’s own employees have trouble with this business model. “Most people joining our company have to be trained … because people are so mission-driven,” Szaky has said. “It’s almost like, ‘F**k you, you should be responsible’ — that emotion comes out.”

I have been trying to stop buying plastic where possible but have you heard of @TerraCycle ?? You can recycle your Amazon packaging! Aussie & living proof are back in the basket bc I know I can recycle them! Huzzah!

— Skylar Carlson (@skylarcarlson) February 4, 2021

Environmental advocates are fed up. “I am a very dedicated recycler. I have never mailed TerraCycle anything. And I don’t plan to,” says Judith Enck, president of Beyond Plastics at Bennington College in Vermont and former EPA regional administrator under Obama. “On one hand, I want to say it’s well intentioned. But on the other hand, I think it gives excuses for large corporations to keep using plastics.”

Let’s zoom out from the small impact of TerraCycle’s recycling programs and look at the question of whether recycling should even be the goal here.

“Pretty much anything is technically recyclable if you throw enough money, hours, and energy at it,” says John Hocevar, Greenpeace USA’s oceans campaign director. He has been working with corporations to get them to phase out single-use plastics, and increasingly sees them turn to TerraCycle instead. “That doesn’t mean it’s a good idea or that it makes sense from an economic or environmental perspective.”

A chemical engineer with more than 35 years of experience, Jan Dell has sat on the US Federal Climate Committee and consulted for companies like Nike, Gap, and Mattel on supply chain projects around water and labor. For those issues, she says corporations had been willing to make real and beneficial changes. But when she tried to talk to them about plastic waste, “they’d say recycling is the solution,” she says. “And I’d be like, no, that’s not possible. As a chemical engineer, I know. It defies the second law of thermodynamics. It’s greenwashing.”

Plastic degrades every time you process it into another plastic product; it can’t be recycled back through the system endlessly. It’s always downcycled, or turned into a material that is less valuable, until that too ends up in the landfill. Or, it’s incinerated, which can pollute local communities with toxic emissions and release greenhouse gases. Some chemical companies are promoting a new type of recycling called chemical recycling, where plastic is broken down into its chemical components to be used as energy or reformed into new plastic, but environmental groups say this process is just as polluting and energy-intensive, if it is even scalable.

For now, new plastic always has to be made, and old plastic will always end up in the environment. The only way to reduce the amount of plastic going into the oceans is to make less of it. Way less of it. But the opposite is happening. Oil companies, seeing the writing on the wall for cars, are moving into plastics.

Three years ago, the company Dell worked for acquired another that specialized in building plastic manufacturing plants, and she was told her job, formerly focused on clean energy, was going to expand to include helping ExxonMobil build new polyethylene cracker plants. So she quit and founded a small nonprofit in California called The Last Beach Cleanup. Her goal was to stop plastic pollution.

“To do that,” she says, “I had to expose that plastic recycling doesn’t work.”

She started looking at the issue of what qualifies as “recyclable.” The Federal Trade Commission’s Green Guide says that to put an unqualified “recyclable” label on something, at least 60 percent of people in locations where it is sold need to have access to a place to recycle it. If not, the manufacturer has to clearly emphasize to consumers the limited availability of recycling.

Dell partnered with Greenpeace to survey all of the country’s 367 materials recovery facilities (MRFs) that sort incoming waste to see what they accept. The study found that in the US, only #1 plastic (clear PET bottles) and #2 plastic (high-density polyethylene milk and detergent jugs) are reliably recycled. The rest of the plastic is landfilled or burned, or shipped abroad to less-developed countries, where it is also piled in landfills or burned.

Take polypropylene (labeled as #5 and used in things like yogurt containers and coffee lids). There are only enough facilities in the US to process 5 percent of what is sold, yet polypropylene products are sold in California with a recycling symbol on them. The closest facility that can recycle these products is in Alabama, 2,000 miles away.

Because of the industry’s expansive use of the chasing arrows symbol, as well as peppy recycling marketing campaigns, confused consumers now throw any and all plastic in their recycling bins. A 2020 report showed that some communities on the West Coast have plastics contamination rates of up to 46 percent. When recyclable plastic is contaminated by unrecyclable plastic, MRFs often have to throw the whole batch away. Only 30 percent of the most recyclable type of plastic, PET water bottles, are ultimately recycled (and are now the subject of a lawsuit from Sierra Club over the “recyclable” label).

“It’s going to take laws and lawsuits to actually fix this because unfortunately, the FTC hasn’t ever enforced the Green Guides,” Dell says.

While she was working on that project, Dell noticed TerraCycle labels popping up on store shelves, and she saw that the company claimed that it recycles 97 percent of the qualified materials sent in to them. She found that claim absurd.

Dell tried to sign up for the Late July chip bag program (a company owned by Campbell’s), but it was closed to new participants, as were more than a dozen other corporate-sponsored recycling programs managed by TerraCycle.

Luis Acosta/AFP/Getty Images
Plastic waste washes ashore in Panama City.

Szaky confirmed that the companies that partner with TerraCycle put a cap on the amount of money they are willing to spend on recycling. When enough people or locations sign up, the new participants are put on the waiting list until the brands decide whether or not they want to allocate more money.

If she didn’t want to wait for the free program, Dell had the option of buying an $86 11 x 11 x 20-inch snack waste box from TerraCycle for her used chip bags. Dell filled a small box the size of the TerraCycle box with plastic packaging, and the contents weighed 3.5 pounds. That means its customers are paying more than $24 per pound ($48,000 per ton) to recycle food packaging waste. Recycling household waste costs the government up to $278 per ton, or just under 28 cents per pound. It’s a bum deal (even with the 10 percent discount TerraCycle sent out last month in honor of Amazon Prime Day).

Dell waited nine months for the Late July program to open back up. “The FTC guidelines are all based on a ‘reasonable’ test. It’s not reasonable to expect that people are going to keep plastic trash all separated in their garage or whatever,” Dell says.

The participation limits were the smoking gun Dell needed to go after TerraCycle. If TerraCycle and corporations are saying their packaging and products are recyclable through a free program in order to incentivize consumers to buy their stuff, but in practice only allow a few thousand (according to the location counters on TerraCycle’s website) to participate in their high-effort programs before encouraging them to plunk down their own cash, in her view, the label “recyclable through TerraCycle” is a lie.

Luckily, Dell lives in California, where organizations can file “organizational harm” lawsuits. “Here I am, putting energy and resources into trying to fix these labels, spending my own money, instead of working on other stuff. And this group over there is doing the opposite, harming my efforts to be an environmental NGO,” she explains. California consumers can also ask for proof that a company is actually recycling what they say they are.

In December, the public interest firm Lexington Law sent a letter to TerraCycle on behalf of The Last Beach Cleanup asking for receipts proving they were recycling. Szaky says that TerraCycle does recycle everything sent in that is qualified, minus a few percentage points for the little bits of labels and similar stuff burned away in recycling. The only thing TerraCycle incinerates, he claims, are noncompliant materials that people send in that they can’t find a way to recycle. He said they are updating the website to provide more information on how things are recycled.

He has not, however, provided documentation. To several of Vox’s questions concerning overall numbers — like how much of each kind of material TerraCycle receives and processes, or what the average waitlist time is — he said that the data exists, but his team hasn’t calculated those numbers.

Unsatisfied with TerraCycle’s response, the law firm filed the lawsuit in March in California. It seeks to force TerraCycle and its partners to stop using the TerraCycle recyclable symbol on products that it hasn’t proven are easily recyclable by at least 60 percent of consumers. If successful, the lawsuit could render the more profitable half of TerraCycle’s business model — getting paid by corporations to tell consumers that they can recycle pretty much anything — a fineable offense. That would leave only the part where TerraCycle charges consumers an exorbitant amount of money to process packaging that corporations created and sold to them.

There was no press release, and the suit got little press coverage. Dell says she’s not doing it for publicity or money. “My greater goal is really to help companies truly make their products reusable, recyclable, and compostable,” she says. “The brands themselves know they could make simple changes to improve design.”

Colgate, for one, has started switching all its tubes to curbside-recyclable #2 HDPE and is open-sourcing its packaging technology with other companies. But the overall trend has gone in the opposite direction. Where we used to buy simple glass and metal containers, now we get mixed plastic-and-paper Tetra Pak cartons, squeezy tubes and drink pouches, beer cans shrink-wrapped in plastic labels, single-use sachets, and coffee cans topped with plastic.

Not long after the lawsuit was filed, around Earth Day this year, Taco Bell announced it was partnering with TerraCycle to recycle all its used hot sauce packets. Dell calculated that if 6.6 billion (60 percent) of Taco Bell’s hot sauce packets were sent to TerraCycle, it would produce 104,000 metric tons of carbon dioxide per year, roughly equal to the annual carbon emissions of 23,000 cars. Of course, the idea of that many Taco Bell customers saving and sending back hot sauce packets boggles the mind. “It just is non-viable,” she says. “It’s not serious.”

Szaky sent Vox a lifecycle analysis that showed that TerraCycle’s collection and recycling of multilayer wrappers have a lower carbon footprint than landfilling them and manufacturing new wrappers from virgin plastic. (Though, experts say that lifecycle analyses have been manipulated by corporations and the plastics industry to make plastic look more sustainable than it really is.)

Greenpeace’s Hocevar put out a press release asking why Taco Bell doesn’t just allow customers to specify they want hot sauce on their tacos or have bulk hot sauce pumps available. “These companies are looking for ways to make it appear that they are doing something about plastic without taking the actions that are really needed to address this,” he says. “You can’t keep making and handing out billions of hot sauce packets and convince people that it’s okay.”

In a statement emailed to Vox, Taco Bell said, “Taco Bell is still collaborating with TerraCycle to determine collection mechanics, which will initially roll out as a pilot program. Taco Bell’s upcoming partnership with TerraCycle is an important step, but not the final step, in identifying viable solutions quickly and efficiently.”

If TerraCycle isn’t the solution, what is?

“I’m a strong supporter of deposits,” Beyond Plastics’ Enck says. Container deposit laws tack on a fee of a few cents on each bottle or can. If you bring the empty container to a collection point, you get that fee back. Deposits are pretty much the opposite of those pricey TerraCycle boxes, because corporations have to administer and pay for the collection points. And then consumers get paid when they turn bottles and cans back in. (In the states that have deposit laws, collecting these containers is the way some low-income people make ends meet.) More importantly, deposit legislation is effective — states with bottle bills have the highest recycling rates in the country.

But brands, unsurprisingly, hate deposits.

Szaky says it costs 4 cents to recycle each Gerber squeeze pouch, so why not just do a deposit system of 4 cents per pack?

“Many people, big NGOs, organizations have been trying that and failed, so no, I couldn’t just do that,” he said. “That’s an absurd idea. I’m not the president of the country. Could you just go pass a bottle bill right now?”

I started to explain that Maine had just passed an expanded deposit bill, but he cut me off.

“What state are you in right now?”

I tell him New York.

“Okay, go pass a deposit law on pens tomorrow. Why don’t you just do that?” (We had been discussing those Bic pens.)

I ask him if he’s suggesting that the only thing I can do as a US citizen to address plastic pollution is to buy a TerraCycle-labeled product.

“No, no, I didn’t say that. Sorry. Not at all. I think, as a citizen, you should first buy less stuff. If you do choose to buy things that have been designed into local recyclability, you’re not benefiting me at all. I think those are way better answers. Then buy a reusable pen. Still has nothing to do with me.” (Side note: Zebra’s 100 percent metal refillable pen comes packaged in plastic.) “Then, if you have a voice and you’re willing to go do it, knock on your lawmaker’s door and ask them to pass taxes and all sorts of legislation to do exactly what you described.”

As Szaky correctly pointed out, until last week, the United States was one of the only developed countries without an Extended Producer Responsibility law. Maine just passed America’s first EPR law last week, which will impose fees on consumer product companies based on the cost of collecting and recycling their products and packaging. (The industry group Ameripen, which counts Nestlé, Campbell’s, PepsiCo, and Tetra Pak among its members, came out against it, saying it gives the government too much authority.) Oregon is considering similar legislation.

TerraCycle’s claims that they can and do recycle almost anything could stymie these efforts to rein in packaging. New York City’s 2015 ban on polystyrene products was delayed for four years because a judge accepted the chemical industry’s promise that it would create a viable recycling system for polystyrene. It was only when a team of experts produced a report showing that there was close to no polystyrene recycling in all of the US that a second judge let the ban go forward in 2019.

“I’m not aware of any case where a company has used us to do such a form of lobbying,” Szaky said in response. “When we are asked or have the opportunity, we always say that EPR legislation is a wonderful thing, and deposit laws are a wonderful thing.”

When asked why he would support legislation that would undercut his business, especially when he has been considering an IPO, he said, “There are many investors who rally behind that, who say, ‘Hey, here’s an investment. We really hope you achieve your mission. And if we make some money, great, and if we don’t, and the mission was achieved, that’s awesome.’”

“I wish we didn’t have to exist,” he went on. “I have a friend who runs a great nonprofit that focuses on battered women in Mexico. Do you think he wants to be in business?”

“Don’t you ever worry you’re being used?” I asked him.

“Yeah, I absolutely think about that,” he says. “And then I’m thinking, they could spend a bunch of money on TV commercials that made you love their products. And if they’re going to use me to do the same effect as a commercial, I think it’s still better for the planet. And that’s fine.”

It’s clear that Szaky believes TerraCycle is helping, in a small way, address global plastic pollution. But his belief that corporations will fulfill their pledges to go plastic-free feels like a holdover from the 2010s, when entrepreneurs thought they could do an end run around the government and disrupt their way into environmental responsibility.

It would be better, however, if he wasn’t having consumers pay for this delusion.

Malcolm Jackson for Vox

Sabrina Nichelle Scott became her grandmother’s round-the-clock caregiver when the pandemic arrived in New York City.

Suddenly, much of the outside support became too risky, and Scott needed to provide round-the-clock care in her grandmother’s Harlem apartment. She helped Lillian with basic hygiene, prepared enticing meals to encourage her to continue eating (Scott herself subsisted mostly on oatmeal, grits, and sausages), and spent long, sleepless nights trying to ensure her grandmother didn’t leave the apartment and risk exposure to Covid-19. “From March through October of last year, I did not have a break,” Scott told Vox.

Dementia had not robbed Lillian of her fiercely independent spirit, but it had made her verbally and sometimes physically aggressive, and she would fight back against caregivers other than Scott. Whenever Scott undertook essential errands, she depended on her mother or an aide to stay with her grandmother briefly, so she “only went out under extreme, extreme reasons: I had to go to the laundromat, I had to get food. That’s it.” She had to stop working and even postponed a surgery she needed. It was a “very precarious situation,” she said.

An estimated 47.9 million adults in the United States — a staggering 19.3 percent — provide informal care to an adult with physical or mental health needs. This unpaid work, which includes everything from trips to the doctor to feeding, bathing, and toileting, has been valued at $470 billion per year, equivalent to three-quarters of the entire budget of Medicaid. Even in the best of times, the vast majority of this work is invisible and undersupported, leaving millions of caregivers struggling in silence. The Covid-19 pandemic pushed many caregivers into crisis.

And while Covid-19 vaccination has helped some Americans experience a joyful summer, a large number of caregivers are still at home, struggling with the fallout from ongoing isolation, anxiety, and lack of support.

Interviews with caregivers, researchers, and advocates, along with early data about the pandemic’s impact on this vast and diverse group, reveal widespread and alarming rates of anxiety, depression, and other mental health issues. They expose a national failure to support this vital part of our society — one that many of us will depend on at some point in life. 

    <img alt="Chart showing statistics from a 2020 AARP report on unpaid adult caregivers" src="https://cdn.vox-
cdn.com/thumbor/62_EFSzYoo-hG6W2-ZRUN2LVBTA=/800x0/filters:no_upscale()/cdn.vox- cdn.com/uploads/chorus_asset/file/22746801/Q3Mub_america_s_adult_caregivers_before_the_pandemic.png" /> Tim Ryan Williams/Vox

Before the pandemic, Scott’s grandmother Lillian was social and stayed physically active, despite her advancing dementia. She played an important role in her church community and regularly exercised by walking the wide hallway in her apartment building.

The shutdown took those activities away. Dementia left Lillian unable to keep her mask on, so venturing out of the one-bedroom apartment, even to the elevator, was too risky for anything but an urgent medical reason. Within Lillian’s apartment building, “death was all around,” Scott said, recalling people going in and out in protective suits to reach sick or dying neighbors.

In the small apartment, Scott tried to replace her grandmother’s activities as best as she could: They sang gospel songs, and she moved the furniture so they could walk a little bit. But “the routine of ritual is so important,” Scott said, noting these disruptions to social connection and physical activity likely contributed to her grandmother’s decline.

Because of Lillian’s difficulty with masking, she also missed important medical care during the pandemic. Many times they were stopped at the door of a health care facility and turned away, Scott said. “Yes, there are rules, but certain populations cannot follow the rules,” she said, frustrated. “They should not be denied access to health care. … Access to medical resources is a human right.”

Scott struggled to explain her experience even to people who were close to her. Non-caregiver friends talked about pandemic “wellness walks.”

“That’s nice,” Scott said. “I did not have the leisure to go for a walk.” When her brother suggested that she take their grandmother outside, just to sit, Scott reminded him that Lillian could not keep her mask on for the elevator ride.

So they stayed inside, riding the waves of Lillian’s advancing dementia as best they could. “Some days she could dress herself, some days she could not. It ended in me in an apartment not being able to get out to get any fresh air,” Scott said. She remembered thinking: “Mentally, how do I adjust to confinement?”

Her rare breaks during those intense six months came in the middle of the night, sometimes at 2 am, when her grandmother was finally asleep. She used those moments, even during the hot Harlem summer, to take a bath with nice soaps she had splurged on before the pandemic.

Scott said she felt additional pressure, as a Black woman, to be an intensive caregiver. She had previously provided years of live-in caregiving for her paternal grandmother, who had dementia as well. When Scott eventually recommended more skilled care for each of her grandmothers, she says her family resisted — telling her, in effect, “We don’t do that.”

“We meaning Black people,” Scott told Vox.

Malcolm Jackson for Vox

A photograph of Sabrina Nichelle Scott with her maternal grandmother, Lillian, who died earlier this year at the age of 97.

Despite the hardships, Scott says she is grateful to have had the opportunity to care for her grandmother. “My grandmother always opened her doors to people in the family,” she said. Lillian was the person who took people in when they needed a place to stay. “I have no regrets … it was an honor to serve her.”

In March 2021, Lillian died at the age of 97.

Scott has since moved back to Jacksonville, Florida, where she has a house to herself and is working again. Still, she is recovering from the grueling stretch of caregiving and processing the loss of her grandmother. “I could be on a webinar or on the phone, and people don’t even know that tears are coming down my face,” she said. “I know I’m still traumatized from it.”

The Covid-19 pandemic undermined mental health on a massive scale, with anxiety or depression symptoms hitting one in three people in the US early in the outbreak.

Emerging data shows that it’s been especially difficult for informal caregivers. Two Centers for Disease Control and Prevention surveys last winter found that 40 percent of caregivers for adults reported anxiety or depression symptoms, and a worrying number — about 10 percent — reported serious suicidal ideation. These numbers were even higher early in the pandemic.

Among caregivers for adults who were also parents of young children, a staggering 50 percent said they had experienced serious suicidal thoughts. The authors warned of “an urgent need to tailor public health efforts for this population.”

Nearly half of family caregivers reported psychological distress in a different 2020 survey, and more than a quarter reported fatigue. Another study found that early in the pandemic, “family caregivers reported higher anxiety, depression, fatigue, sleep disturbance … and increased financial worries,” compared to non- caregivers. Caregivers said the pandemic “increased the effort involved in providing care” and made it “more physically, emotionally, and financially difficult.”

Chart showing unpaid adult caregivers reporting higher rates and anxiety and depression symptoms than other respondents, in a June 2020 CDC survey. Tim Ryan Williams/Vox

“It’s scarring,” said Scott Beach, lead author of the study and director of survey research at the University of Pittsburgh’s Center for Social and Urban Research. Some caregivers may bounce back from mental health challenges as supports return, but others will likely continue to struggle with residual stress and worry, especially if the pandemic worsened the physical, cognitive, or emotional health of the person they were caring for.

These early data points are only a glimpse of a worldwide problem affecting millions of people. “We’re going to see fallout from this for quite a long time,” said Amy Goyer, an AARP family caregiving expert who has also been a caregiver herself.

Before the pandemic, roughly 60 percent of informal caregivers had some form of paid employment, and the majority of those were working at least 40 hours a week. The pandemic forced a large number to start working from home — which meant juggling job and caregiving responsibilities simultaneously.

“For many of us, that’s our respite,” Goyer said of going to work. “That’s our break from caregiving. And now we’re at home constantly with our loved one.” Experts told Vox that, unlike the struggles of working parents, which were gradually acknowledged by the media, employers, and policymakers, the strain on adult caregivers was less widely recognized and supported.

Others had to leave the workforce altogether. Jessica Mills, 30, who lives in Augusta, Georgia, cares with her father for her 61-year- old mother, who has advanced, early-onset dementia. “She’s very active, so she has a lot of needs,” Mills said, and “within the past couple of years has just needed 24/7 care.”

About a decade before the pandemic, Mills dropped out of college and moved back home to help with her mother’s care. She worked part time at restaurants to bring in extra income. But when the pandemic started, Mills quickly stopped working, to limit her family’s exposure to the coronavirus. That safety-based decision came with a huge trade-off: “All of a sudden you’re stuck, without the resources,” she said. She told Vox that because her home state of Georgia hasn’t expanded Medicaid, she didn’t have health insurance and was unable to afford therapy.

Caregivers who didn’t have the option to stop working outside the home often carried with them additional levels of anxiety. Many, disproportionately people of color, were already in jobs that put them on the front lines of the pandemic, such as in the service sector. People of color are also more likely to be in caregiving roles in the first place.

Chart showing unpaid adult caregivers of color working longer hours on care Tim Ryan Williams/Vox

Add to that the fact that many communities of color were hit the hardest by the coronavirus. Which meant, for many caregivers, “they’re dealing with higher rates of Covid-19 within their communities, still trying to juggle and balance caregiving, and often not having access to the same resources and supports,” said Christina Irving, the clinical services director at Family Caregiver Alliance in the Bay Area.

Black individuals are still less likely than white or Latinx people to have received at least one dose of the Covid-19 vaccine, leaving more people vulnerable to the virus. “So all these stressors coming at people from multiple angles has made it that much harder for them to manage,” Irving said.

For caregivers, isolation and worry were often a way of life even before Covid-19. “The things everybody feared and had difficulties with during the pandemic, we live that way,” said Jeanie Olinger, 60, who lives in Oklahoma City.

Olinger’s son Chris, who is 37, experienced a debilitating traumatic brain injury in a 2008 car crash. Since then, he has needed full care — from feeding to moving — around the clock. “He does nothing but look at me,” Olinger said.

In 2010, Chris was able to relocate from a care facility to his mother’s home, and she began working remotely and enlisting home health aides for Chris’s extensive needs. She was getting by.

But when the pandemic arrived last spring, “we didn’t let anybody in,” Olinger said. Like the majority of other people receiving care, her son — who has chronic asthma in addition to the brain injury — was at a higher risk of severe Covid-19 and death from the virus. That meant Olinger was on duty caring for her son, while also trying to work from home. “It was really difficult,” she said. For months, she stopped taking her usual stress-relieving runs and walks for fear of contracting Covid-19. Her one source of release was a punching bag in her garage. “When I was overwhelmed, I would go punch the snot out of that bag,” she said.

Joseph Rushmore for Vox

Jeanie Olinger’s son Chris, 37, needs full-time care after experiencing a traumatic brain injury in a 2008 car accident.

Joseph Rushmore for Vox

For months during the pandemic, Olinger had to stop letting health aide workers into her home for fear of exposing her high-risk son to Covid-19.

Joseph Rushmore for Vox

For months, Olinger says she stopped taking her usual stress-relieving runs and walks for fear of contracting Covid-19.

Caregivers like Olinger stopped seeing family and friends outside their household, and lost other forms of support as well. “Before, you could get your cousin to come over for four hours on Saturday so you could go see a movie, just to escape it and recharge your batteries,” said John Schall, CEO of Caregiver Action Network, a support and education nonprofit, and a caregiver himself. During the pandemic, “that kind of respite, those breaks, haven’t existed.”

Pandemic caregivers were additionally burdened with bearing witness as their loved ones slid precipitously toward poorer health. “The lack of social interaction and lack of physical activity really, really affected so many,” Goyer said. “Their loved ones got worse so much faster.”

Care recipients got “less socialization, less stimulation, less exercise and ability to be out in the world,” Irving said. This leads to more cognitive decline as well as loss of mobility and physical health, she noted. “That’s a huge strain on caregivers.”

The pandemic also prevented some caregivers from accompanying their loved ones — even those with severe cognitive, memory, or communication issues — into medical facilities. Megan Powell, 38, cares for her husband Jesse, 36, who has PTSD and traumatic brain injuries from four tours with the US Army in Afghanistan. She has long been his “caregiver slash advocate” at medical appointments, she told Vox, but she was shut out when the pandemic began. She tried to call in to appointments using speakerphone, worrying that because he has memory issues, important information was getting lost. 

    <img alt=" " src="https://cdn.vox-

cdn.com/thumbor/3IZRzDKdv_-r8sA1wRMN9WX5prc=/800x0/filters:no_upscale()/cdn.vox- cdn.com/uploads/chorus_asset/file/22751728/MeganPowell_038_copy.jpg" /> Lizzie Chen for Vox

Megan and Jesse Powell sit down for dinner with their young son.

Lizzie Chen for Vox

Powell cares for her husband Jesse, who has PTSD and traumatic brain injury from serving in Afghanistan.

Terri Harvath, the founding director of the Family Caregiving Institute at the University of California Davis, said that her older partner was hospitalized in March 2020 for cancer-related complications. “She was delirious from surgery, she was frightened, she had a tracheostomy so she couldn’t talk, she couldn’t indicate what she needed,” Harvath said. Harvath was able to pull strings to be in the hospital, but for three weeks, she was only allowed to leave her partner’s room for one daily trip to the cafeteria.

Caregivers have also struggled with doubt and distress about bringing their loved one to the ER or hospital in the first place, not just because of potential Covid-19 exposure but also the risk of separation due to pandemic restrictions. In her clinic, Harvath worked with one caregiver who thought her mom might be having a stroke but initially thought twice about taking her to the ER because she knew it would mean leaving her at the door.

Informal caregivers are “the invisible member of the interdisciplinary health care team — they’re absolutely essential,” Harvath said.

In August 2020, Olinger’s son, whose traumatic brain injury left him unable to communicate, became very ill and needed to be hospitalized. “It was just terrifying,” Olinger said. After her son received a positive pneumonia diagnosis and a negative Covid-19 test, Olinger was allowed to stay with him. But if he had tested positive for Covid-19 and needed isolation, she said, she would have brought him home — even to die — rather than leaving him alone at the hospital without a caregiver.

Joseph Rushmore for Vox

Caregivers like Olinger stopped seeing family and friends during the pandemic, losing vital forms of support.

For those who could use them, telehealth appointments brought minor and routine care to a growing number of people. But these virtual consultations could not replace important medical interventions and procedures. And “for others who don’t have easy access to technology, or can’t afford the devices or the monthly internet and broadband costs, it just put one more barrier for them being able to access services and supports,” Irving said.

Even as vaccines and lower Covid-19 rates have made it easier to access medical care in many places, missed care is likely to have lasting impacts. “For people who have chronic health conditions, for older adults, they may not bounce back in the same way that somebody who’s healthier would,” Irving added. “So we are going to see a bigger impact even as we start to come out of Covid-19.”

It’s not only the health of care recipients that has been at stake: Caregivers have had a hard time getting health care, too. This is a challenge even during normal times, when, as Goyer put it, “the biggest challenge they have is taking care of themselves.” And regular health care is especially important for this group: More than 40 percent of informal caregivers reported having two or more chronic diseases.

If the primary caregiver is unwell — or has a health crisis — that puts the care recipient at substantially higher risk for poorer health and death.

These sorts of worries wracked Mills while she and her father took care of her mother in Georgia. Mills got very sick with Covid-19 last spring, leaving her then-65-year-old father, in the same house, as the sole caregiver to her mother for weeks on end. “If me and my dad had gotten sick [and] were in bed for weeks, she wouldn’t be able to take care of herself,” Mills said of her mom. “It’s just so scary to think about.”

The mental health of caregivers can also have serious effects on the people they look after. Researchers have found over the years that conditions such as depression tend to lead to lower quality of care. A recent study out of China, for example, discovered that stroke patients were more likely to die within six months of discharge from the hospital when their family caregivers experienced anxiety or depression.

For caregiving families, the pandemic restrictions and isolation could make home a pressure cooker. Powell, the caregiver for her Army veteran husband, describes herself as more of an emotional caregiver, because Jesse can keep up with most daily tasks. But his injuries have led to emotional volatility and, after the pandemic shut down his treatment facility, suicidal thoughts. Which put the whole family, including their 4-year-old son, on alert. “Things got really bad,” said Powell, who also experiences anxiety and depression.

Lizzie Chen for Vox

Powell recalls a lot of anxiety running through their home during the pandemic.

“There was a lot of anxiety throughout the entire house,” she said. “It’s not just the three of us. We have this thing in the house with us … the PTSD monster,” she said. “You don’t know what role it’s going to take in the day, but it’s going to have a role.”

Although she tried to shield their young son from the stress, it was often impossible. “There were a lot of days I would realize he was sucked into it,” she said. “We’re here, and we’re stuck, and we’re not going anywhere.”

The vast majority of people will need care at some point in their lives — and almost anyone can find themselves in the role of caregiver. Of the adults who are not currently caregivers, about one in six middle-aged adults expect to become one within the next two years. And an aging population will need more care, with fewer young people to provide it. “The numbers are such that we have to do something to help people,” Harvath said.

An even greater share of this burden will likely be shouldered at home. After the alarming number of deaths from Covid-19 in long-term care institutions, “many families will be reluctant going forward to use those facilities, and we’ll bear an even greater brunt of care — even when it becomes really, really difficult to do so,” Harvath said. And much of this unpaid work will likely be done by people who have not been trained, supported, or adequately cared for themselves.

Some experts and caregivers see the pandemic as an opportunity to increase awareness about these struggles. “My hope is that one of the things that happens is that we use this disruption to all of our lives to make change,” Harvath said.

Before Covid-19, the US was lagging behind other countries in its support for informal, home-based care. Catching up would be a first step toward helping caregivers recover — for example through tax credits, an expansion of federal family leave policies, and direct pay to informal caregivers.

The Credit for Caring Act, introduced in Congress this spring, would give eligible family caregivers up to $5,000 per year to help pay for care costs. The Biden administration has proposed up to 12 weeks of annual paid family leave that would cover caregivers like the ones in this story, through the American Families Plan.

But other plans have already fallen by the wayside. For example, Biden’s American Jobs Plan proposed $400 billion for additional Medicaid funds to help ease some caregiving burdens, but it was cut from the bipartisan infrastructure bill currently under discussion in Congress.

Harvath also cautions that programs should reach not only low-income caregivers but all families that could use help with care. “Caregivers who are in those middle-income brackets have very few resources,” she said. “They don’t have the resources to pay for care, and they don’t have eligibility” for assistance. Some families choose to spend down their savings just to qualify for essential services they could not otherwise afford.

A handful of states have invested more resources into support of this critical unpaid workforce. In 2018, Hawaii piloted a program making caregivers who also have paid jobs eligible for financial assistance for care expenses, with the aim of helping them stay in the workforce — and of saving the state and taxpayers money on outlays for otherwise more expensive care. The same year, Washington state also launched a pilot program to provide a monthly stipend for services to caregivers who don’t quite qualify for Medicaid benefits. This helps the caregivers and recipients, while saving the state money. Washington is set to evaluate the program at the end of this year, and if it’s deemed successful, it could be replicated in other states.

But policymakers can’t help caregivers unless they can locate them in the first place — which can be more difficult than it sounds. “Most people don’t use that term to describe themselves,” said Jennifer Olsen, executive director of the Rosalynn Carter Institute for Caregivers. “If you ask them, they would say, ‘I’m the sister,’ ‘I’m the daughter.’” And it’s not a status doctors typically discuss or screen for — despite the stakes — as they might for family medical histories.

Irving advocates for a more comprehensive connection of services among health care, social service, and government systems. “It doesn’t mean they’re going to provide all the supports — just so that caregivers don’t fall through the cracks.”

Joseph Rushmore for Vox

Olinger helps her son Chris into his bed for an afternoon nap in their apartment in Oklahoma City, Oklahoma. Experts and caregivers see the pandemic as an opportunity to increase awareness about the struggles of at-home care.

The US can’t afford to neglect caregivers. There is neither the budget nor the professional labor force to replace them. “If all of us family caregivers went on strike tomorrow — not that we would ever do that to our loved ones — but if we did, there’s no way the nation could ever fill this gap,” Schall said.

Scott, who trained as a business anthropologist and who now works as a home care consultant, believes that caregivers should receive guaranteed coverage for physical and mental health care: “How can you take care of someone else if you’re not healthy?”

Simply raising awareness is a first step, Scott added. “There will be more and more people who need caregivers,” she said, whether or not we like to think about it. “We’re all aging.”

Scott sees financial support for informal caregivers as a huge opportunity to keep care recipients out of much more expensive, tax- funded care. She would like to see this on a national level, rather than a patchwork of state and local programs that provide uneven coverage. And now is the time for these changes, she said: “Why not be preventative, like preventative medicine, as opposed to waiting until later?”

Caregiving may be a labor of love, but it’s still labor. We need to care for the caregivers, not least because helping them helps everyone else. “There’s an obligation,” Scott said. “Caregivers extend lives.”

CREDITS
Editors: Eliza Barclay, Daniel A. Gross, Julia Rubin
Visuals editor: Kainaz Amaria
Copy editors: Tanya Pai, Tim Williams
Fact-checker: Becca Laurie

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