Help Your Loved One Take Control
Know the Caregiving Basics
Recognize what’s needed. Just as the right treatment can have a tremendous impact, so can the right kind of support. Developing the basic skills you need as a support giver can make a critical difference in the life of the person you care for. A few basic skills are listed below:
- Understand how much help—and what kind—is needed. Have discussions, take notes, make a chart, do research—find out exactly what is needed, and make sure you can do your part.
- Understand what kinds of help you can—and can’t—provide. Know the difference between what you can do, what a healthcare professional must do, and what is best done by the person with epilepsy.
- Know what to do in an emergency. A seizure is not always an emergency. However, if injuries have occurred during a seizure, if a seizure continues for more than 5 minutes or happens repeatedly, you may need emergency assistance. Keep emergency telephone numbers handy. Ask the healthcare professional what types of seizures have occurred, which other types of seizures may occur in the future, and what to do in a likely emergency.
- Help to keep the focus on the goal. If things get difficult, help your loved one focus on the goal—a healthy, independent life, with seizures as controlled as possible and any limitations due to epilepsy overcome or kept to a minimum. Where possible, concentrate on the practical steps that can help you both get there.
- Understand and support the treatment plan. Help make taking medicine exactly as prescribed by your healthcare professional a part of the daily routine. Missing a dose could cause a breakthrough seizure. Be sure the healthcare professional is consulted before any changes are made or if unexpected side effects occur.
- Understand what side effects may appear. The medicine that works the best for an individual patient is not always the one with the fewest side effects. Because the person you care for will need to live with whatever side effects happen to appear—at least for a while—it is important to know what to expect. Your healthcare professional should be able to help.
- Know the limits; encourage appropriate precautions. When it comes to activities such as skiing, skateboarding, or scuba diving, it’s important for your loved one to know what limits are appropriate. Make sure her or his healthcare professional is part of the decision process.
- Know the risks of alcohol. Alcohol can lower the threshold at which seizures occur and may increase the side effects of antiepileptic drugs.
- Encourage basic health. Your loved one can improve the odds of controlling seizures by getting enough sleep on a regular basis and avoiding unnecessary stress.
- Communicate. Talk with the person you care for regularly. Encourage an open discussion of her or his feelings and concerns. Look for practical solutions. If you are a parent or other primary caregiver, speak with your loved one’s healthcare professional to get your questions answered. Keep asking until you know what you need to know.
- Learn as much as you can. Get in touch with other support givers. Keep up with news from epilepsy organizations. Ask your loved one’s healthcare professional to recommend groups and newsletters. Keep yourself well-informed, and help your loved one take an active role in her or his own care. And—if your healthcare professional decides TOPAMAX is right for your loved one—be sure to join Everyday Essentials™, the FREE support program for people with epilepsy and those who care for them.
Find the Right Approach
Find out how you can help with treatment. From helping to keep track of how often seizures occur to monitoring dosages and any side effects, you may have an important role to play in keeping treatment on track and making sure it is as effective as possible.
Find out how you can help with practical issues. Solving practical problems—anything from transportation issues to having a plan in place for emergencies—can go a long way toward putting the person you care for in control.
Find out what kinds of help you may need from others. Even if you are the primary support giver, you need not be the only one. Just as healthcare professionals help you and your loved one deal with the medical aspects of epilepsy, you needn’t be alone in dealing with the social, psychological, and practical aspects of the condition. Look into support groups in your area or at the national level, and get other friends and family members involved.
Line up substitute caregivers. Whether you are a parent or a peer, and whether your loved one’s condition is well-controlled or severe, the time will come when you will need someone to fill in. Whether it’s a neighbor to look in on the person you care for, a dependable sitter for your child with epilepsy, or even something more demanding, you should be prepared to take time off when YOU need it, or when something urgent comes up. If your options are limited, look into respite care. The more demanding your caregiving is, the more you yourself will need a regular break: Take one.
Keep Learning
Talk to people who’ve been there. Get in touch with others who support people with epilepsy, and find out what has worked for them. Online communities and local organizations are a good place to start.
Ask a healthcare professional. For more facts and information about epilepsy and its treatment, ask the healthcare professional to recommend publications. Many responsible organizations devoted to epilepsy have Web sites, newsletters, and other useful publications.
Get help. To read up on specific topics and concerns, visit the Epilepsy Foundation Web site at
For links to many other epilepsy resources, visit the Epilepsy Information Page of the National www.epilepsyfoundation.org.
Institutes of Health’s National Institute of Neurological Disorders and Stroke (NIH/NINDS). Please see our Important Organizations and Resources page for more.