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The Love of Care: Special report examines the hardships, stresses, and triumphs of family caregivers

The Love of Care
Posted at 11:39 AM, Dec 12, 2022

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 the lengths they go for the ones they love.

“We think, ‘I'm just going to do this for love,'" said Christina Keys, who lives in Vancouver, Wash. and takes care of both her mother and her ex-boyfriend. "We think, 'I love my mom, I love my husband, I love my child. Of course I'm going to do this. Of course I'm going to step up.’ We have no idea what it's going to be like walking through that 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 would ever even need.”

As we spent 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 subject that rarely gets discussed publicly, particularly considering the massive number of people it impacts.

I. Commitment

"I remember I had a colleague ask me if caregiving was traumatic," said Aisha Adkins of Dunwoody, Ga. "I almost laughed."

For Adkins and so many caregivers, they did not intend to end up on this journey and found themselves inundated with questions, challenges, decisions, and on-the-fly education.

"At the age of 27, I did not have a frame of reference for things like Medicare and Medicaid," said Adkins, who takes care of her mother and father. "I just had to dive in headfirst and do the research. I didn't see an alternative."

According to a survey from the AARP, caregivers on average provide 24 hours of care each week. More than half said they felt they had no choice but to take on the role.

"I grew up with a lot of stories from the Great Depression about when eleven people lived in the same house and everyone took care of each other," said Mark Lee, a resident of Fishers, Ind. who cared for his father and now cares for his mother. "That's just how I grew up believing it should be."

For many, caregiving means taking care of an elderly parent. But caregiving takes a variety of forms, including when the recipient of that care is one's partner - or one's child.

"When I first met John, I'd be lying to you if I said I didn't see the wheelchair," said Arianna Kilmer of Windsor, Colo. about her partner, John Morris, who became a quadriplegic after an accident in 2005. "There were moments where I was Googling, 'How do I date a guy in a wheelchair? What is the life expectancy? Will I ever be able to have a kid and start a family with this man?'

"But I'm stubborn. And I was like, 'I'll figure it out. John and I will make it happen.' And we have."

II. Coping

But making it happen is hardly easy.

"Caregiver burnout is a real thing," Kilmer said. "It's human nature. We have somebody that's ill, and you just want to fix them. You want to pour your heart into them to make sure they're OK while you're burning the candle on both ends."

According to the AARP, just 12% of Americans estimate they're in fair or poor health. Nearly twice as many caregivers say the same.

"At the beginning of my care journey," said Keys, "I was getting between 5-10 hours a week of sleep. 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 recalled a similar journey when he began caring for his father. "I was eating junk food all the time. I was way over 35% body fat. I was a heart attack waiting to happen."

Keys, Lee, and the rest of the caregivers we interviewed spoke of realizing the importance of self-care as they care for others. Lee works out five times a week. Keys does a daily gratitude journal. Adkins meditates, when she can, several times a week. Kilmer rides a Peloton bike at her house.

"I jump on my bike and pedal the stresses away," Kilmer said. But is that enough time? "No. It's not enough time. Self-care is a tough thing to manage in the caregiver world."

III. Community

Not long after welcoming their son, Ishan, Ganesh and Sitara Nayak knew their lives were about to become way different than they had planned.

Ishan had been born with a variety of medical complications that still affect him today. He's now 21 years old, nonverbal, and unable to do most basic functions on his own.

"In a so-called normal life," said his father Ganesh Nayak, "when you have kids, you take a pause, and your social life changes. In a family with disabilities, that phase is kind of permanent."

For many caregivers, isolation becomes a major byproduct of taking on such a draining and time-consuming role.

"Friends do things that friends do," said Keys. "They ask you how you're doing. And you just spent the past two days in the hospital. You got home and had two hours of sleep. You try to give them the PG version of what's happening, but you just kind of feel like Debbie Downer."

A Cornell University study of caregivers found nearly half were considered "socially isolated." Often that's a product of how long they've been doing it. The AARP survey found caregivers of adults provide care for an average of 4 1/2 years. Nearly 30% have been providing care for more than half a decade.

The caregivers we interviewed all sought ways to find community. Lee joined a writing group. Kilmer set up a caregiver meetup group in her community. Keys and Adkins found jobs with organizations who represent and provide resources for caregivers.

"Caregiving is not flashy," Adkins said. "It's not sexy. It's just a necessity that all of us have."

IV. Compensation

It's enough of a challenge to take care of one's own health and find emotional support on top of the myriad of responsibilities of caring for a loved one.

It's even more of a challenge when money becomes a factor. And if often does so very quickly.

"Between me and my mom, we had over $300,000 in 401Ks sitting at our fingertips," recalled Keys about the start of her caregiving journey. "We went through that in a year-and-a-half."

Keys said she worked part-time jobs, sold her things, and gave plasma in order to pay rent and provide private care until finally finding full-time employment.

Everyone we interviewed spoke of financial obstacles playing a major part in their care decisions.

Kilmer, for example, calls John her husband. But legally, she said, "we can't get married. The moment we get married, under insurance, they think I should do these responsibilities and not get paid for it. I have to weigh my options. Do I pay my mortgage or do I sign a piece of paper to know that I'm with John?”

Family caregivers lose an estimate $522 billion in wages every year. Financial assistance for caregivers is offered unevenly from state to state, which creates hurdles for those trying to figure it all out.

“I was very determined that we should write our will," said Sitara Nayak, Ishan's mother. "We have a special needs trust that is also really important, because anything that is given in a child’s name, if he has more than $2,000, he will lose all his Medicaid benefits. And without Medicaid, it’s impossible.”

The federal government's Administration for Community Living recently released its 2022 National Strategy to Support Family Caregivers. It offers dozens of best practices for state and local jurisdictions to provide strong support across the board, including financially. But it will be up to those jurisdictions to implement those practices.

V. Calling

In our time with the various caregivers we interviewed, we found extraordinary challenges. But we also found extraordinary perseverance, the byproduct of the critical mission of providing a loved one with proper care.

"It's just that time that we spend together, not necessarily doing anything extravagant, but just being in each other's presence, telling each other that we love each other," Adkins said. "As sappy as that sounds, those are things that I've learned to really savor and appreciate as much and as often as I can.”

Keys expressed a similar sentiment.

“No matter how hard caregiving is, I am so grateful my mom and Terry are both alive," she said. "And I get to hear them say, ‘I love you,’ and I get to tell them, ‘I love you.’ My dad recently died, and I’ll never be able to hear that again. But every day I get to hear it from them.”

The AARP survey found, in spite of everything, more than half of caregivers has given them an added sense of purpose or meaning. That sense was reflected in the words of everyone we interviewed.

For Kilmer, it's even more poignant after welcoming a baby girl, Amelia, who turned three months old shortly after our interview.

“I was 20 weeks pregnant," Kilmer said. "And there was a moment 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 goes, ‘We’re bringing a child into a world where this child is going to have a different lens. This child is going to know patience. This child is going to know love from two parents that love with their whole heart, even if they can’t scratch their own nose.'"

To care for a loved one means a myriad of things. But above all, it means providing that loved one with dignity, empathy, and, of course, love itself.

"I look at it as caring for humanity itself," said Ganesh Nayak. "It's to recognize what humanity is and what it means to be human."