For people with epilepsy, seizures affect almost every aspect of their lives. The seizures also affect their caregivers' lives, with impacts on physical health, emotional functioning, social relationships, employment and finances. Caregivers are at risk for post-traumatic stress, anxiety and depression.
Here's how one family works to channel their stress and frustration into helping others.
Olivia (Livy) Scheinman has been having seizures since she was only a few hours old. Now 14, Livy has undergone multiple surgeries but must continue to take several anti-epilepsy medications. And she still has seizures.
"We've gone through 14 medications," said her father, Jon. "They work for a certain period of time and then they stop working. That means at some point you have to drop everything and start going to the hospital. It puts life on hold."
Be the change
"Livy has other disabilities as well, so that compounds the stress," Jon said. "We've been fortunate that she hasn't had to be in the hospital for the past 5 or 6 years, but we still deal with daily seizures, medication schedules, doctors' appointments. There's plenty of stress and sleep deprivation."
Jon and his family have worked to channel their stress into a positive outlet: helping others. Livy's twin sister Hailey seems to have led the charge.
"I remember my parents on the patio, talking about how to raise money for Livy's surgery," said Hailey. She decided to help by selling her artwork on eBay and giving her parents the proceeds.
She was five years old at the time.
Besides the paintings (one sold for $66), Hailey began making and selling jewelry. With the help of her parents, her efforts grew into Livy's Hope, a nonprofit organization that raises awareness of epilepsy and raises funds for research. Its national initiative, Lemonade for Livy, raises funds through lemonade stands and parties. Lemonade for Livy fundraisers collected more than $130,000 in the first seven months of 2019 alone.
It's all part of the Scheinmans' philosophy: Don't give up; give back.
"I encourage people not to sit on the sideline and wait for someone else to do something," said Jon. "Families play a tremendous part in getting things done, whether it's new laws or policies or research. We can change lives – but you have to get involved."
Being active in this way also provides crucial contact with other families going through similar experiences, he noted, which can be an outlet for stress and frustration.
While caregiver stress is most commonly associated with parents, the siblings of children with epilepsy also experience stress, frustration and anxiety. For many of them, there is no "life before" epilepsy.
"I don't know anything different," said Hailey, now 14. "But when I see Livy having to go through this, it still makes me feel helpless. Why can't there be a cure, and why can't I give her something to help her?"
"As a kid, you expect your parents to be happy and to be there to comfort you if you're upset," she said. "But when you see your parents upset about something they can't control, and you know they can't be comforted… I've seen that a lot."
When Hailey was 7 years old, she told a newspaper reporter what she had learned from being Livy's sister. "[Livy] has taught me that everyone should be treated equally and with respect," she said. "The only thing she sees in the world is good and so do I. She has taught me how to have more empathy to others. She has taught me how to be a better person."
Hailey uses music to relieve stress. "I have a group of songs I listen to that are calming," she said. "I also like watching movies and TV shows."
Jon turns to exercise. "Physical fitness is one of my things, and it helps release a lot of stress," he said. "I love cooking too… when I was in the hospital [with Livy] I'd look out the window and think about eating a great dinner. I'd think about the things I'd rather be doing."
Jon and Alison both have family living nearby, which is also an incredible source of support, he said. Jon also made a career shift, moving from working in finance at the Home Shopping Network to becoming senior director of community development for the Epilepsy Foundation of America. As the main caregiver for Livy, Alison's career aspirations were put on hold indefinitely. "Her career has basically gone away," said Jon.
Caregiving crowds out careers
Alison is far from alone. A 2017 Harvard survey of 1,500 employees who also were caregivers found that 80% of them felt that caregiving affected their ability to do their jobs, and one-third had left previous positions due to caregiving responsibilities. Younger workers, higher-paid workers and higher-ranking workers were more likely to have left a job due to caregiving duties.
While these employees were a mix of those caring for aging parents, children and other family members, the negative impact of caregiving on employment is far-reaching and clear. Yet, according to the Harvard datay, most US employers are unaware of the phenomenon.
Besides employment concerns, caregiver stress comes from many other areas. "The communication at doctors' offices can be poor – both with us and with the various offices," said Jon. "Insurance companies are stressful – you run in circles trying to get answers about why something isn't covered. Those extra stresses, when you're watching your child have dozens of seizures a day – they bleed into the rest of your life."
Sharing Livy's story
Livy's Hope provides a platform to share Livy's story, educate others and raise funds for research. The organization is active on social media and spearheads multiple projects to support epilepsy research and care, including the lemonade stands and a recent national campaign to collect items for use at Ronald McDonald Houses around the country.
For the past decade or so, the Scheinmans also give talks at conferences, businesses, fundraising events and school groups. Hailey has often been front and center, giving speeches at events or explaining epilepsy and seizures to a classroom kids who sometimes were older than she is.
At the school events, "We bring Livy along, and all of her equipment," said Hailey. "If you teach people when they're young, they'll be much more accepting.
"Kids can do amazing things," she said in one of her speeches. "Together, we can change the world."