ATLANTA — More than 53 million Americans identify as family caregivers.
That’s more than 1 in 5 adults.
In our documentary, “The Love of Care”, we spent time with six caregivers in five cities to understand how far they go for those they love.
“We’re thinking, ‘I’m just gonna do this out of love,'” said Christina Keys, who lives in Vancouver, Wash., and cares for both her mom and her ex-boyfriend. “We think, ‘I love my mom, I love my husband, I love my kid. Of course I will. Of course, I will step up. We have no idea what it’s going to be like to go through this journey, how we’re going to have to become doctors and nurses and learn medical procedures and medical terminology that we had no idea we’d ever need.
Spending time with caregivers from Washington to Indiana to Georgia, we found stories that were hyper-specific but also contained many similar themes. We also found a topic that is rarely discussed publicly, especially given the sheer number of people it affects.
“I remember a colleague asking me if caregiving was traumatic,” said Aisha Adkins of Dunwoody, Ga. “I almost laughed.”
For Adkins and so many caregivers, they had no intention of finding themselves on this journey and found themselves inundated with questions, challenges, decisions and on-the-fly education.
“At 27, I didn’t have a frame of reference for things like Medicare and Medicaid,” said Adkins, who cares for her mom and dad. “I just had to dive in head first and do some research. I didn’t see an alternative.”
According to an AARP survey, caregivers provide an average of 24 hours of care per week. More than half said they felt they had no choice but to take on the role.
“I grew up with a lot of Great Depression stories about when eleven people lived in the same house and everyone looked after each other,” said Mark Lee, a resident of Fishers, Ind. . who took care of his father and now cares for his mother. “That’s how I grew up thinking it should be.”
For many, caregiving means caring for an aging relative. But caregiving takes a variety of forms, including when the recipient of that care is one’s partner – or child.
“When I first met John, I would be lying to you if I said I didn’t see the wheelchair,” Arianna Kilmer from Windsor, Colorado said of her partner John Morris, who became tetraplegic after an accident in 2005. “There were times when I would google, ‘How can I date a guy in a wheelchair? What’s the life expectancy? Will I ever be able to have a child and start a family with this man?’
“But I’m stubborn. And I was like, ‘I’m going to figure it out. John and I are going to get through this.’ And we have.”
II. To face
But realizing it is not easy.
“Caregiver burnout is real,” Kilmer said. “It’s human nature. We have someone who’s sick, and you just want to heal them. You want to give them your heart to make sure they’re okay while you burn the candle on both sides.”
According to AARP, only 12% of Americans consider themselves to be in good or poor health. Almost twice as many caregivers say the same thing.
“Early in my healing journey,” Keys said, “I was sleeping 5 to 10 hours a week. The doctors told me, ‘You’ve gained 100 pounds. You have diabetes now. You have high blood pressure. Your body is literally shutting down. They said, ‘Christina, you’ll be lucky to live six months.'”
Lee recalls a similar journey when he first started caring for his father. “I ate junk food all the time. I was well over 35% body fat. I was having a heart attack.”
Keys, Lee and the rest of the caregivers we interviewed said they realized the importance of taking care of themselves when caring for others. Lee trains five times a week. Keys keeps a daily gratitude journal. Adkins meditates, when she can, several times a week. Kilmer rides the Peloton bike at her house.
“I hop on my bike and pedal to take the stress off,” Kilmer said. But is that enough time? “No. That’s not enough time. Self-care is a difficult thing to deal with in the world of caregivers.”
Shortly after welcoming their son, Ishan, Ganesh and Sitara Nayak knew their lives were going to turn out very differently than they had planned.
Ishan was born with a variety of medical complications that still plague him today. He is now 21, non-verbal and unable to perform most basic functions on his own.
“In a so-called normal life,” said his father Ganesh Nayak, “when you have children, you take a break and your social life changes. In a disabled family, this phase is sort of permanent.”
For many caregivers, isolation becomes a major by-product of such an exhausting and time-consuming role.
“Friends do things friends do,” Keys said. “They ask you how you are. And you just spent the last two days in the hospital. You went home and slept for two hours. You try to give them the PG version of what is going on, but you just smell like Debbie Downer.”
A Cornell University study of caregivers found almost half were considered “socially isolated”. Often it’s a product of how long they’ve been doing it. The AARP survey found that caregivers of adults provide care for an average of 4½ years. Nearly 30% have been providing care for more than half a decade.
The caregivers we interviewed all looked for ways to find community. Lee joined a writing group. Kilmer started a meetup group for caregivers in his community. Keys and Adkins have found jobs with organizations that represent and provide resources to caregivers.
“The caregiving isn’t flashy,” Adkins said. “It’s not sexy. It’s just a necessity we all have.”
It’s challenging enough to take care of your own health and find emotional support on top of the myriad responsibilities of caring for a loved one.
It’s even more difficult when money becomes a factor. And if he often does it very quickly.
“Between me and my mom, we had over $300,000 in 401Ks on hand,” Keys recalled of the start of her caregiving journey. “We went through this in a year and a half.”
Keys said she worked part-time, selling her stuff and donating plasma in order to pay rent and provide private care until she finally found full-time employment.
Everyone we interviewed spoke of financial barriers playing a major role in their care decisions.
Kilmer, for example, calls John her husband. But legally, she says, “we can’t get married. By the time we get married, under insurance, they think I should take on these responsibilities and not get paid for it. I have to weigh my options. Should I pay my mortgage or do I sign a piece of paper to know I’m with John?”
Family caregivers lose an estimated $522 billion in wages each year. Financial assistance for caregivers is offered unevenly across states, creating obstacles for those trying to figure it all out.
“I was very determined to write our will,” said Sitara Nayak, Ishan’s mother. “We have a special needs trust which is also very important because anything given in a child’s name, if they have more than $2,000, they will lose all of their Medicaid benefits. And without Medicaid, that’s is impossible.
The federal government’s Administration for Community Living recently released its National Strategy 2022 to support family caregivers. It offers dozens of best practices for state and local jurisdictions to provide strong support at all levels, including financially. But it will be up to these jurisdictions to implement these practices.
In our time with the various caregivers we interviewed, we encountered extraordinary challenges. But we also found extraordinary perseverance, the byproduct of the critical mission of providing proper care for a loved one.
“It’s just that time that we spend together, not necessarily doing anything fancy, but just being in each other’s presence, telling each other that we love each other,” Adkins said. “As silly as it sounds, these are things that I’ve learned to really savor and enjoy as much and as often as possible.”
Keys expressed a similar sentiment.
“No matter how difficult caregiving is, I’m so grateful that my mom and Terry are both alive,” she said. “And I hear them say, ‘I love you,’ and I can tell them, ‘I love you.’ My father died recently, and I will never be able to hear that again. But every day, I hear it from them.
The AARP survey found that, despite everything, more than half of caregivers gave them meaning or added meaning. This sentiment was reflected in the words of everyone we interviewed.
For Kilmer, it’s even more emotional after welcoming a baby girl, Amelia, who turned three months shortly after our interview.
“I was 20 weeks pregnant,” Kilmer said. “And there was a moment when I was like, ‘What am I doing? Why am I bringing this child into our chaos? But I remember saying that to John. And John says, ‘We bring a child into a world where that child is going to have a different purpose. This child will know patience. This child is going to know the love of two parents who love each other with all their hearts, even if they can’t scratch their noses.'”
Caring for a loved one means a myriad of things. But above all, it means offering that loved one dignity, empathy and, of course, love itself.
“I see it as caring about humanity itself,” said Ganesh Nayak. “It’s recognizing what humanity is and what it means to be human.”