When someone you love is diagnosed with epilepsy, you want to do everything you possibly can to help, but sometimes, it’s hard to know what to do or even where to start. But maybe the best place to begin is with what it means to be an epilepsy caregiver, and how your actions and support can make a world of difference to someone you love.
As a parent, family member, friend, or spouse of someone who has epilepsy, you play a major role in your loved one’s life. You’re the strong backbone, the receiver of the first phone call, the cheerleader, and distributor of daily moral support. You’re the one who’s making sure they’re safe and on the right track with their medication. It’s important for you to learn as much as you can about epilepsy, and to understand how it affects your loved one physically as well as emotionally.
Seizures and the uncertainty of when they might happen can make it difficult for your loved one to do everyday activities. They may feel alone and worried, but may not tell you since they don’t want to be a burden. Letting your loved one know you’re there to support them no matter what can make a big difference and help them feel less alone.
Try to understand what your loved one is going through, feeling, or thinking. Focus on the positive things, and encourage your loved one to participate in doctor-approved activities with friends or family to help fight feelings of loneliness and isolation.
Talk to your loved one often, and let them know you’re always available to help.
In addition to staying positive and encouraging your loved one, it is also important for you to understand both the emotional and physical toll epilepsy can take. And, for you to know what to do—and what NOT to do—should a seizure occur.
Learn the signs, and understand the difference between simple partial-onset seizures and complex partial-onset seizures. Simple partial-onset seizures can vary from strong feelings of déjà vu to physical changes in the body such as fast heart rate, upset stomach, or spinning sensation. They are different for everyone but usually last 2 minutes or less and the person remains conscious.
Complex partial-onset seizures may begin as simple seizures in a part of the brain known as the temporal or frontal lobe. They may also affect consciousness. Sometimes the symptoms are subtle and the person appears to be daydreaming. Other times, the person can do embarrassing or even dangerous things such as walking into traffic. A complex partial-onset seizure could last 1 to 2 minutes, but everyone's experience is different.
The first time you experience someone you love having a seizure, it can be scary. But the more you know about seizures, and what’s taking place in the body, the better prepared you’ll be for helping someone with epilepsy.
There are many misconceptions around managing a seizure event—many are actually harmful. Remember, the 2 most important things you should do are to keep the person safe and ensure they are breathing.
According to the National Institutes of Health (NIH), here is what to do if someone has a seizure:
One way to minimize the potential risks and problems seizures may cause is to be prepared beforehand.
Help create a home environment designed to protect against further injury in the event of a seizure. Remove sharp objects, glass containers, and consider covering hardwood floors with carpet for soft cushioning. You may want to remove locks on bedroom and bathroom doors, just in case.
Help your loved one create a routine, which is very helpful in remembering to take medication, and to take it at the same time every day.
Keep an open line of communication, so you always know where your loved one is. Talk often and have him or her send you text messages to let you know everything is okay.
No one knows your loved one quite like you do, so watch for any changes in mood, emotional distress, or any other signs that something may be different. Keep a logbook or seizure diary to share with the doctor. Tell your loved one’s doctor if you notice any changes. Going to appointments with your loved one, taking notes, and describing any seizures or side effects you’ve witnessed is incredibly helpful for your loved one and the health care team.
While your loved one may want the independence of driving themselves, every state has different laws and regulations regarding driving and epilepsy. To find out your state's driving regulations, click here.
Medical bracelets and instruction cards will let others know that your loved one has epilepsy and what to do if a partial-onset seizure occurs.
Teach others who spend time with your loved one, such as teachers, friends, and coworkers, about partial-onset seizures and what to do if one occurs. Having this extra support can make times when you can’t be together more comfortable for both of you.