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.
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.”