5 Helpful Tips for Caregivers

Receiving a diagnosis of epilepsy can be a life-altering experience, not only for the person with the diagnosis, but also for the parent, spouse, child, or friend who becomes the person's primary caregiver. The role of caregiver can become a challenging job, both emotionally and physically. Caregivers take on many responsibilities to support their loved one during the unpredictability of epilepsy. The better prepared you are in managing life as a caregiver of a child or caregiver of an adult with epilepsy, the easier the outlook will be for everyone.

1. Take care of you

As a caregiver of a loved one with epilepsy, you have an important job to do. However, the most important job is to take the best care of yourself. Take time for you, eat healthy, exercise regularly, stay positive, and continue with your personal and social life as much as possible. Try not to put your life on hold. Continue to enjoy your hobbies or social groups as much as you can.

You should also try to maintain as normal a schedule as possible. Find ways to relax and manage the stress. If necessary, ask for help yourself. You may be the support of your loved one, but it is certainly okay to need support as well. If you are feeling exhausted, overwhelmed, or too stressed to think clearly, then you can’t be at your best, as a person or as a caregiver.

2. Educate yourself

An effective caregiver is a well-informed caregiver. Educate yourself as much as possible about your child's diagnosis or adult loved one's treatments. This will help you know how to help. Learn as much about managing epilepsy as you can, without overwhelming yourself with information. Information overload is certainly an issue, however, you may be more effective if you are well-informed.

Using support groups or online communities like ours can be a great place to start without feeling inundated with massive amounts of information. Educating yourself will also help prepare you for any changes in your loved one’s symptoms or behavior.

3. Join a support group

Joining a support group is a great way to share feelings and experiences, and find helpful advice. You may need someone to talk with openly and honestly, or someone to listen to and support you. It may be reassuring to know that you are not alone and that there are others on a similar journey. Although our community has a lot of information regarding first-hand experience with epilepsy, we also have information and a network for caregivers! In the U.S, the Epilepsy Foundation Helpline can also help connect you to a support group and resources.

4. Stay organized

Being organized and setting realistic goals can help both you and your loved one address each day. Try your best to be organized with medical information and records. Focus on making daily or weekly to-do lists, and working with your loved one to make plans and goals. Organize prescriptions and doctor’s appointments, and try to keep notes of your doctor's recommendations, as well as any changing medications, symptoms, or behaviors.

5. Adapt to change

There will be many transitions during this epilepsy journey. It is important to research the care available and adapt to epilepsy's unpredictability and changes. Don’t be afraid to seek out help and ask for guidance.

The caregiver’s role can sometimes be challenging; from learning about the condition and how best to help your loved one, to remembering to also care for yourself. It is important to adjust to your role while maintaining a healthy and supportive relationship with your loved one.

Let us know how you have taken on the responsibility of being a caregiver, or how your caregiver makes an impact on your journey! Share your caregiver story, or post in our forums.