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AARP AARP States Arkansas Caregiving

Putting Family First: It is an honor and privilege to care for our mom.

Marcia Rainey with her mother and brother in a hospital waiting room.
Caregivers often take time away from work and their own care to attend to the needs of a loved one.
Photo: Marcia Rainey

Marcia Rainey pulls a scrapbook out and hands it to me across the table of the booth we sit in at a small roadside diner in Mayflower, Arkansas. She was expecting the question; it’s one she gets often.

It’s a common and simple question, often asked between women my age as we get to know one another and share relatable stories about our lives, but it’s a loaded question that can often backfire: do you have children? Women with infertility issues or women who experienced stillbirths can feel put on the spot. There are also women who often sheepishly share that they never wanted children so that they could work or travel freely without the obligation of caring for dependents. Marcia and I had spent enough time together that I felt safe asking the question. It’s hard not to imagine the kind soul who greeted me by taking my hands and then giving me a hug, not being a mother.

“Here, take a look at this,” she says, with a hint of pride, as she flips the book open to the first page.

The photos reveal a beautiful baby girl. Her creamy black skin is a contrast to the pale blankets around her. You can’t help but want to hold this sweet child who pulls so hard at your heart through photos that are more than two dozen years old. But when I look up from the page, that’s when I see the tears on the edges of Marcia’s eyes.

“And now this,” Marcia says as she flips the book to the last pages. My breath catches. The baby girl in a coffin, age two.

“I’m so sorry,” I say with sincerity, choking back the tears that were beginning to swell in my eyes, knowing that Marcia’s time as a parent was cut much too short. Marcia explains that her only child was the victim of gun violence at the hands of her former boyfriend, who has spent nearly 24 years behind bars for murdering this young child.

When Marcia speaks of her child’s killer, she does so with caution, laced with a twinge of hope. “If they called me today and said, should we parole him, it probably wouldn’t make sense to people, but I would say yes. You see, I have learned forgiveness in these years. I was once so angry. And while I was angry, my life was not good. When I learned to start forgiving, my life got better. God is good. That’s what I would tell other people.”

Marcia Rainey and her mother pose for a photo.
Photo: Marcia Rainey

I don’t share this part of Marcia’s story to paint her as a victim, but to show her strength, courage, and personal evolution. While nothing will ever take the place of her daughter, family is everything to Marcia, which is why she has thrown herself into being a caregiver for her mother. She shares this duty with her brother, whom she describes as her rock, and simply calls Brother.

“When mom was in Kansas City, Brother and I would take turns going up there to help her out,” Marcia recalls. “But as time went on, Brother needed to be closer to his business and I was out of leave time. As a family, we made the decision to move mom from Kansas City to Mayflower.”

Marcia Rainey's brother, whom she calls Brother, visits with their mother about financial and medial matters.
Photo: Marcia Rainey

AARP provides cost-saving tips to help those who are forced to move a loved one from one state to another, including suggestions for packing and finding the right movers. Another tip is to look for ways to make the transition as easy on your family member as possible by setting up their living space similar to their former dwellings and scheduling friends and family to drop in and check on them or take them for outings.

Marcia’s mother was battling cancer and had decided to take quality over quantity of life and stop treatments. However, the family still needed to find healthcare providers, such as a dentist in Arkansas. They also needed to address where mom would live, if it would be full-time, or if she would go between her children’s homes. And since Marcia had not worked in months, funds were tight. In the end, Marcia and her brother decided that mom would live at Brother’s house and the siblings would split time staying there to care for her, this way mom always had the same surroundings, and it was less taxing on her.

During the months of planning the move, Marcia often felt alone in Kansas City with her brother back in Arkansas working. It wasn’t just the thought of the challenging days she and her mom were facing or the anxiety over the move; Marcia’s isolation was compounded by a rare skin condition that caused her to be in tremendous pain. Her back ached in the cold, a side effect of an accident when she was struck by a car as a child and had to re-learn to walk.

Marcia Rainey, her mom, and brother.
Photo: Marcia Rainey

Marcia isn’t alone. Many caregivers neglect their health. According to a 2020 Caregiving in the US Report, caregivers rate their overall health as fair or poor at 21% compared to non-caregivers at 12%. Thirteen percent of caregivers do not have insurance, and African Americans are more likely to contribute greater hours to caregiving, at 31.2 hours weekly, compared to Caucasian caregivers, who clock in 21.2 hours per week. As Marcia experienced, 4 in 10 caregivers rarely or never feel relaxed, and 41% reported feeling lonely.

Alone in Kansas City, caring for her mom, Marcia would often pause to take a walk down the streets she knew as a child. She would walk from her mom’s house to the house where her father had lived when she was a girl. For Marcia, this was her form of self-care. “Mom and dad divorced but wanted to live close so we could freely go between their homes. Those walks, seeing the familiar sights of my childhood, were when I could be quiet and talk to God; it allowed me to stay prayerful when I was feeling stressed out,” Marcia shared. She encourages other caregivers to listen to what their bodies need and not allow caregiving burdens to overwhelm.

“I was fortunate I was not alone in this caregiving journey, I had my brother,” said Marcia. “But he runs a business, and I work in a factory. I knew we needed to put his job before mine. And honestly, it is an honor and privilege to care for our mom. We both feel that way. She did so much for us when we were little. We grew up thinking we were the richest kids on the block, but the reality was we probably didn’t have that much.” AARP’s Valuing the Invaluable estimates that the economic impact of Arkansas’ 420,000 unpaid caregivers to the state is a combined $5.8 billion, which breaks down to $14.77/hour.

Arkansas ranks 21st in the country according to AARP’s 2023 State Scorecard for Long-Term Services and Support , a fact to consider had Marcia and Brother made the decision to place their mom in a long-term care facility. The report examines Affordability and Access, Choice of Setting and Provider, Safety and Quality, Support for Family Caregivers, and Community Integration. Arkansas ranked in the fourth worst tier overall when the results were tabulated. AARP Arkansas hopes to work with lawmakers and others to strengthen the options available to those who need care help. For example, hiring someone to offset family care is too costly for many families. AARP’s long-term care calculator estimates in-home care services for the Little Rock metro area at nearly $2,000 per week, assisted living at $4,487 per month, and private nursing home care at $7,147 monthly.

As the family navigated the move, they grew increasingly frustrated with the lack of available resources. They reached out to AARP and were given a list of resources in Arkansas to contact. However, many of those resources only wanted to focus on long-term care options. Marcia feels that more efforts need to be made by businesses and organizations to understand the financial strain family caregiving causes and work with those who are in crisis. “We weren’t asking for a handout. We were just asking for assistance in deferring the bills until we could get back on our feet,” says Marcia. “When I was working two weeks a month, I couldn’t get help, even showing that I was caregiving two weeks a month. I couldn’t even get food stamps or help with the light bills. In the end, we had to cash in my life insurance policy so we could make it.”

Marcia shares that it’s important to put family first and allow people within your circle to support you. Through unexpected kindness and generosity, the family successfully moved mom to Arkansas. “People, like my aunt, would randomly stop by with a meal or slip me a little cash to put gas in my car,” said Marcia. “It was definitely God working all of this out for us. That’s why I tell people to put God first, he will take care of you.”

Marcia’s mom is enjoying both of her children, who split their time caring for her, and Marcia, after dealing with personal health problems, has returned to work.
Marcia. “I kept putting it off. Mom was watching one of her favorite shows, Dr. Pimple Popper, and a person on the show had the same skin condition as me and that’s when I thought maybe there is help. Thankfully, we found a doctor who listened, as strange as it seemed that we were talking about a TV show and a rare skin condition, but he was actually able to help. And after we got back to Arkansas, I was also able to have a surgery on my back that allowed me to return to work more or less pain-free.”

Marcia says that returning to work has been gratifying. “It’s not just about the money, it’s about the support. So many of my work friends told me they missed me, they ask about mom, they care how we are doing. I feel really supported.”

“Our journey isn’t over, and finances are still tight,” said Marcia. “I hope that our lawmakers understand that the decisions they make impact real people. Anything that can be done to make it easier on caregivers and those we are caring for would be appreciated.”

As our nation becomes more diverse, we must address the caregiving experiences and needs of African American, Hispanic, Asian American, American Indian, and LGBTQ+ family caregivers,” said AARP CEO Jo Ann Jenkins in a 2023 article. “Thanks to strong advocacy work by AARP and others, we have made significant progress in recent years at the federal and state levels to increase support for family caregivers. But the demand continues to grow, and much more needs to be done.”

AARP and AARP Arkansas are excited about the strides forward happening right now regarding caregiving. The Credit for Caring Act is a bipartisan bill that would help offset a portion of the cost of caregiving expenses such as home care aides, adult day care, home modifications, assistive technology, respite care, transportation, or other supports that help caregivers and their loved ones.” In the meantime, AARP continues to offer family caregiving resources for all at AARP.org.

Photos in this article are used with permission from Marcia Rainey and family.

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