7 Helpful Tips for Epilepsy Caregivers

More than 3 million Americans, both adults and children, have epilepsy. Caregiving for this condition can be scary and stressful. Seizures happen unexpectedly and not knowing how to respond can be a big challenge for caregivers. Though epilepsy presents itself in different ways for every person, there are general guidelines that can make you feel more capable and prepared as a caregiver.

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  1. Know what to expect.

  There are two major types of epileptic seizures. Generalized seizures affect both sides of the brain and focal seizures affect just one area of the brain. Some seizures are so small it’s hard to tell if they’re even happening. Other seizures can be more dramatic, physical and last several minutes. The key to handling any type of seizure is learning more about epilepsy and how it typically behaves in the person you’re caring for. Read as much as you can, talk to doctors and reach out to epilepsy support groups for information that will make you feel more confident as a caregiver.
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  2. Make communication a priority.

  Good communication is essential to managing epilepsy. This means communicating clearly and often with the person you are caring for, as well as their doctor and support system. Be sure to collaborate with their doctor to understand what types of seizures they experience and share details that you notice during seizures. You also need to know about medications they’re taking, so you can monitor dosage and effectiveness. It’s important that you also communicate well with the person you care for. Listen and be encouraging when they are frustrated with their condition and symptoms.
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  3. Safety first.

  A key practice that will put you at ease is preparing a safe space for seizures to take place. Depending on the severity of the seizures, you may want to put padding on sharp corners of furniture and make sure floors are carpeted. Keep living spaces clutter-free to reduce injury during a seizure. You should also keep any eye on dangerous spaces or situations when you’re caregiving out in public. Also, know when it’s time to call 911. Emergency indicators include difficult breathing, a seizure that lasts more than 5 minutes, if person is injured during the seizure or a seizure that happens in water.
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  4. Take notes.

  One of the biggest ways a caregiver can help an epileptic is to monitor their seizures, since they often don’t remember what happened. Make note of any circumstances that happen just before a seizure that may be a trigger. This could be stress, lack of sleep, missing a meal, medication or hormonal changes. Keep a seizure journal and write down details like the time and date, how long the seizure lasted and the behavior of the person before and after. This information can help their doctor manage their treatment and help you better anticipate what to expect during future seizures.
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  5. Be encouraging.

  The unpredictability of epileptic seizures can be frustrating and a good caregiver can help relieve anxiety and provide positive support. Epileptics can do most activities that anyone else can, sometimes with a little extra supervision. Encourage the person your caring for to get engaged in recreation and social activities. You can even get involved with them. Walking, jogging, tennis, volleyball, basketball, baseball and golf are some of the safest activities to recommend. Water sports are the most dangerous and require constant supervision. Focus on inspiring a positive can-do attitude and provide whatever support they need to participate fully in life.
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  6. Educate others.

  Epilepsy isn’t widely understood and it can be scary for friends, classmates and co-workers who aren’t educated about the condition. As a caregiver, one of your biggest jobs is being an advocate. You don’t have to tell everyone you meet that the person you’re caring for has epilepsy. But try to help the people closest to them learn more about epilepsy so they won’t be afraid or anxious about it. Encourage them to get involved with epilepsy awareness and education.
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  7. Take care of yourself.

  Caregivers need care themselves. If you’re a parent or close friend of an epileptic, you may not even identify yourself as a caregiver. But constantly dealing with the stress of unpredictable seizures can be exhausting for anyone. No matter how much you care about the person you’re caring for, you need to take time for yourself to relax and recharge. Make sure you get enough sleep and eat a healthy, nourishing diet. Regular meditation and exercise can relieve stress and only take 15-30 minutes a day. Joining a support group is also a great way to connect with people who share similar challenges.