Caregivers: Supporting the supporters

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Daniela Lakosilova has brain radiation in September 2008.

Daniela Lakosilova has brain radiation in September 2008.

Cancer has been a painful part of Radka Lakosilova’s life. From four cycles of chemotherapy and a stem cell transplant, to losing weight, hair and friends, she’s felt every moment.

But the pain she feels is secondhand. It’s her 18-year-old daughter, Daniela Lakosilova, who has battled acute lymphoblastic leukemia for seven years.

Radka and her husband, Petr Lakosil, who donated his stem cells for Daniela’s 2009 transplant, have been there for every doctor’s appointment, surgery and treatment.

They were there when she relapsed and her boyfriend broke up with her because it was too much for him to handle. They were there to make sure her dress fit perfectly for the homecoming dance, despite her fluctuating weight.

“Being a cancer caregiver to someone you love so much is the hardest thing,” Radka said. “Not being able to make the pain go away — the nausea, the emotions, the stress. …”

Radka said she does her best to wear a brave face for Daniela and Petr, the “softy” of the family, but in at least two places, she’s only human.

“I cry in the shower or when I’m driving alone,” she said. “One parent has to be the tough one.” Though, she added, tough is relative when your daughter is a fighter.

For some patients, support groups are an important addition to treatment, creating an environment where they can talk about their shared concerns, receive emotional support and learn coping skills. The same is true for caregivers.

Radka is among the estimated 65 million unpaid caregivers in the United States who assist a chronically ill, disabled or aging loved one, according to a 2009 study conducted by the National Alliance for Caregiving and AARP.

Being a caregiver can take a physical and emotional toll whether someone considers it a personal responsibility, feels pressure to assume the role, or can’t afford to pay for long-term care. Reports also state that caregivers, the majority of whom are women in their late 40s, are more likely than noncaregivers to live in poverty and experience poor mental health.

Daniela and her parents took part in the Light the Night walk in October 2013. They've participated every year since 2008.

Daniela and her parents took part in the Light the Night walk in October 2013. They’ve participated every year since 2008.

A number of organizations, such as AARP, the U.S. Department of Veterans and the American Cancer Society, offer support programs for caregivers of all kinds, providing tips and connecting them through online communities.

Radka found an outlet on Facebook, frequenting groups created by and for parents who have a child battling cancer. They’ve given her a place to ask questions and share what she learned caring for Daniela, like the fact that Jolly Ranchers mask the metallic saline taste brought on by chemotherapy.

But a message thread on social media doesn’t always suffice. When Daniela was diagnosed at 12, her parents had to decide whether she should go through radiation treatment. It frustrated them that her doctors couldn’t share specific examples of how other children her age reacted to the treatment.

“I wanted to talk to other parents whose kids were like Daniela,” Radka said. “What did they do? How are their kids now?”

Jackie Herigodt knows firsthand how important it is to have someone like that on speed dial.

She was 28 when she started caring for her mom, who died of lung cancer in 2004. Throughout her mom’s cancer, she and her sister wondered if they were making the right decisions. Developing relationships with doctors offered peace of mind, but she wanted someone to tell her, “This is what I did.”

That experience is what led her to Imerman Angels. The Chicago-based nonprofit organization connects cancer fighters, survivors and caregivers with one another so they don’t have to face cancer alone.

Founder Jonny Imerman, who was recognized as a CNN Hero in 2012, said one-on-one relationships allow people to get the support they need from someone who knows exactly what they’re going through.

The idea came to him when he was fighting testicular cancer in the early 2000s. He had the support of his family and friends, but he wanted to talk to someone who had gone through it — someone who survived.

Herigodt works for the organization as a cancer support specialist and outreach coordinator, matching people based on factors such as diagnosis, location and family structure. She has matched herself as a caregiver mentor three times.

The first time was about six months ago when a woman caring for her mom called from the United Kingdom looking for support. “How do I fix this?” she asked. Herigodt remembers asking the same question when she was caring for her mom.

Daniela underwent a stem cell transplant in November 2009.

Daniela underwent a stem cell transplant in November 2009.

“I wasn’t ready (to talk about my experiences) at first,” Herigodt said. “It can be awkward as an employee to do it, but it’s also important to practice what you preach.”

She also made a match for Radka Lakosilova and Daniela, who’s now in remission and attending classes at Triton College in River Grove, Illinois. They were paired with a caregiver and her son, who also has acute lymphoblastic leukemia.

Lakosilova said she’s always happy to answer a quick question or be a good listener during the really tough times. She said it’s therapeutic for her, too, talking to another caregiver about her daughter’s journey — especially knowing she has the opportunity to help.

It’s not that talking to noncaregivers about what her family has been through doesn’t have the same effect. She’s just careful not to make anyone feel uncomfortable by offering too much information, as both she and Daniela have lost touch with old friends over the past seven years. They’ve also made new friends for life through support groups and camps for people with cancer.

“A while ago my neighbor and I were talking,” Lakosilova said. “She said, ‘Do you think one day you’ll be able to not talk about cancer?’ She didn’t mean it in that way. She was just asking. I hope that day comes, but for now, this is my life.”

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