They're young and in love. But she's sick, and he's her caregiver, and that means nothing else comes easy.
There are days when Jordyn Glick, 27, can't eat or drink at all. She gets so tired and weak she can barely stand up. She has gastroparesis, where food stalls out in her stomach and doesn't get digested. It comes with unpredictable bouts of nausea, periods of agony in her guts, and malnutrition. Earlier this year, she didn't leave their house in Lubbock, Texas, at all for two and a half months.
Dakota Heath, her 26-year-old boyfriend of four years, is her watchman, "always picking up on the small things," he says. He's on alert for her next flareup, the kind that can leave her bedridden for a week. He listens for a particular note in her cough that might mean she's going to vomit again. Sometimes she gets so dehydrated from vomiting that he takes her to the ER —again. (Five times in the last few months.)
Of course, he's anxious. Bigger picture, he worries about what might happen to her in the future, the one they intend to share. He'd been depressed in the past, but this is something else. They can't plan anything, from the next day to the next ten years.
"There have been times when I have had breakdowns, because of everything piling up, accumulating," he says.
For both Heath and Glick, there is no living for the moment, like other 20-somethings do. Still, like every young couple, they dream and plot the shape of their lives together. Often that means planning from a defensive crouch, hoping to tame her illness enough to see through the chapters they'd pictured — a graduate degree for her, a career devoted to doing good in the world for him. Possibly one day having kids.
She's the one who is sick, but he also lives with the reality of her disease. And it's only in recent years that researchers in health sciences have started probing the experience of young caregivers like him to understand it better. They're finding that caregiving at this age doesn't just feel different. It is different — it hits harder. Young caregivers might not have the life skills or the emotional resilience that the role demands. Caregiving is adulting with the intensity set to max.
And the responsibility emerges right as you're figuring everything else out: love, friends, career, identity. It can open new doors — or blow your life up.
Who are the young caregivers?
Young caregivers have always been there, doing all the same things that adults do — helping people get dressed, charting symptoms and medicines, dealing with doctors and bills. About one-quarter of all family caregivers are between 18 and 36, according to the National Alliance for Caregiving. One survey suggests that almost half of them are men. They're more likely to be Latino or Black; a survey in 2018 found that only 17% were white.
They've just been invisible.
"They fall into every potential crack that exists," says Melinda Kavanaugh, a professor of social work at the University of Wisconsin Milwaukee who is one of the few researchers who study this population. In terms of resources, "Nothing is targeted for a 22-year-old. Nothing."
But a small group of young researchers have started sharing ideas, trying to better understand the specific needs of these young people and how to meet them. Most of the researchers have lived through it themselves. They're crafting support tailored to the younger crowd, such as tools focused on communication, ways to combat isolation, and better methods of coping.
Their research shows that caregiving at this age can leave its mark on all aspects of life. When social scientist Feylyn Lewis, now at Vanderbilt University School of Nursing, spoke to young adult caregivers for her 2017 dissertation, they told her that caregiving shaped their careers, partnerships, and their decisions about children.
Another researcher, Amanda Kastrinos, has seen that it can either shatter the sense of self or foster a deeper strength of purpose.
The upshot is that when you're young, caregiving can shape your destiny.
A blank space
Kastrinos, now a postdoctoral research fellow at Memorial Sloan-Kettering Cancer Center in New York City, learned first-hand how invisible young caregivers can be.
During the spring of her first year in graduate school for health communication, her father was diagnosed with advanced cancer. They had always been close, talking about everything. She wanted to walk through this with him. She moved back home for the summer to help.
But something had changed. He didn't tell her all the details of what was going on, and sometimes he didn't want her there while he was getting treatments. As the fall approached, he told her to go back to school and keep on going with her education, her life.
She was confused and upset. She didn't understand why the distance had opened between them. She looked for help, but there were no caregiver support groups at her university to talk things over.
"I have great friendships, but nobody knew what I was going through, and trying to explain it was so difficult," she says.
In desperation, she sought answers in scientific papers about caregiving. Nothing there either. It was all about middle-aged people with middle-aged problems, people who already had jobs, marriages and families of their own. Hoping for some insight into her situation, she found only blank space.
As her father became sicker, he let her get more involved in his care, and she was there for him 24/7 before he died that winter.
That spring, she changed the focus of her PhD. She decided to study what it meant to be a young caregiver, beginning by analyzing data from interviews with daughters who'd taken care of their mothers with cancer. She soon discovered that many sick parents hid information from their children, trying to protect them from bad news. Her experience was actually typical — but nobody had asked that question before.
It turns out that the lives of young caregivers are quite different from their older counterparts. In 2015 and 2016, Vanderbilt researcher Feylyn Lewis sat down for formal interviews with 58 young adult caregivers in the United Kingdom and the United States in what is still the largest study of its kind to date. She found that young caregivers often felt out of step with their generation, more mature than other people their age, but missing out on typical milestones of adulthood like college, marriage, or travel.
It was if they were stranded somewhere between childhood and adulthood, both too old and too young. To her surprise, almost all these young people told her about despair and thoughts about suicide.
For them, caregiving can also influence major decisions about family and career.
In her interviews, Lewis found that young caregivers were often in romantic relationships that they described as dysfunctional, with partners who need care due to substance abuse or mental health problems.
In addition, they often turned the experience into a profession, a pattern she still sees in her current role as assistant dean.
"I'm blown away by how many nursing students are also family caregivers," she says. She has an upcoming research project focused on this phenomenon and its impact on mental health.
'I'm supposed to be here'
In a study published earlier this year, Kastrinos and her collaborators got a sense of why caregiving in early adulthood might shape so many life decisions — because it changes the sense of self. They analyzed interviews with 33 bereaved caregivers, many who said that the role disrupted other sources of meaning, such as cultivating social networks or building a career. It cut them off from what grounded them.
At this age, people typically explore new beliefs, relationships and friendships. It's when you become the author of your own life story, as psychologist Dan McAdams puts it.
But when caregiving takes up all the bandwidth, school, work, social and other identities fade away. It's hard for anyone, but because young people's identities are still under development, they may be particularly prone to what psychologists call role engulfment: One facet of your life becomes the only thing you think about, the only self you recognize.
Still, for others, the disruption ultimately created a new sense of strength and competence, at least in retrospect. It was the first major curveball that life had thrown their way — and they managed to get through it. They felt they better understood themselves, and felt more solid about their priorities.
For Heath, it's like that. Even though caregiving is difficult, it fits with who he is. He takes the in sickness and in health thing seriously. Caregiving for the woman he loves is a source of strength, a feeling that he's doing what he believes in.
It felt pretty natural that Heath took on this new role in her life, agrees Glick. "I never asked him to do it. I never expected it, but also I couldn't see it any other way," she says. She is the independent type, and if he weren't there, she'd probably try to do everything herself. He slows her down, reminds her to pace herself, to take breaks.
Heath says he's lucky to have support not just from friends and family, but also from his employer at the Caregiver Action Network, where he is a policy fellow. But on some level, he always had been a caregiver. It was in his personality and his ethos even before it was his daily reality.
"It's part of me," he says. "I'm supposed to be here helping her do this."
More support on the way
This emerging research has practical implications: If caregiving while young has the power to fracture or solidify a young person's identity, help for them should point toward ways to process and make sense of the experience, and stitch back together that sense of self.
Connecting with other people going through the same thing can provide some grounding. Several online groups are now tailored to young adults, such as Jennifer Levin's Caregiver Collective Facebook group, which includes Gen Z as well as slightly older adults.
The Caregiver Space hosts Young Caregivers Community on Facebook for those under 35. Lorenzo's House organizes a support group for young adults caring for people with dementia. San Francisco's Family Caregiver Alliance also has support groups and advice on self-care.
A few organizations now specifically recognize and reach out to young adult caregivers. The Alzheimer's Disease nonprofit Hilarity for Charity was cofounded by Seth Rogen and Lauren Miller Rogen, who was herself a caregiver in her 20s. It supports a Youth Movement Against Alzheimer's that cultivates activism for high school and college students, and hosts a peer program so younger people can educate each other about Alzheimer's, as well as online events like a hosted coloring workshop to cultivate calm. The organization is also producing a caregiver's guide for people under 50 that includes — gasp — humor.
Kastrinos is working on another kind of help that builds on her expertise in health communication. She's developing a program to teach young adult caregivers ways to talk about sticky topics like difficult symptoms, end-of-life care, and the distribution of responsibility among siblings. It's adapted from a similar, successful project for people with cancer and their adult children.
Like many people she interviewed, she has complicated feelings about what happened in her own life. Caring for her father, and losing him at such a young age, was devastating.
It also showed her there was an urgent need to understand and help young caregivers — a project that gives her purpose, a chance to build something new in spite of the loss.
Kat McGowan is a caregiving reporter based in Berkeley, Calif. This story was supported by the Rosalynn Carter Fellowships for Mental Health Journalism.
Copyright 2024 NPR