If you love and care for someone who’s been diagnosed with epilepsy, you know how stressful it can be to anticipate the next seizure or help them get appropriate medical care. Over time, that stress can take a toll on you.

Learning self-care as a caregiver, even as you continue to care for your child or another loved one, can benefit both of you. In this article, we’ll discuss why caregiving can be so hard and offer self-care tips aimed at supporting your mental health, quality of life, and overall well-being.

Why Do Epilepsy Caregivers Also Need Care?

Caring for someone with epilepsy can be stressful and may lower your quality of life. After all, caregivers have a wide range of duties, depending on their loved one’s type and severity of epilepsy.

You may have to know how to help identify and avoid seizure triggers or care for your loved one during a seizure. You may need to drive them to appointments, advocate for their medical care, or make sure they take their medication properly.

Offering this kind of care can be stressful, especially when you’re doing it for a long time or without any clear end in sight. Caregivers may experience symptoms of excessive stress, including:

• Losing interest in favorite activities
• Feeling overwhelmed or worried all the time
• Growing more tired and irritable
• Using alcohol or drugs in an attempt to feel better

How Members Manage Caregiving

One MyEpilepsyTeam caregiver described their feelings: “My partner has epilepsy, and I’m a caregiver for him. I’m at the point of burnout and resentment. I’m suffering from my own stressors and sometimes feel overwhelmed. Then I feel extremely guilty for feeling this way.”

Another said, “I love my husband so much, I want whatever is best for him, but I also want a husband, too. I don’t know how to separate being a wife and being a caregiver.”

“I don’t know how to separate being a wife and being a caregiver.”

— A MyEpilepsyTeam member

No one wants to — or should have to — experience these emotions and struggles. When caregivers learn to care for themselves, too, they can ease some of these symptoms, feel better about themselves and the loved one they care for, and improve their quality of life. As one caregiver on MyEpilepsyTeam shared, in their experience, “Learning how to cope with epilepsy is just as important as treating it.”

How To Care for Yourself as an Epilepsy Caregiver

You can take several steps to invest in self-care, even as you’re helping your loved one manage epilepsy. These caregiver self-care tips can help you feel more supported.

As a caregiver for someone with epilepsy, your day might be more packed than other people’s. Although you may not feel comfortable asking someone else to take over your caregiving duties, you can get support by asking for help with other tasks. Maybe a friend or family member can pick up groceries or put gas in your car.

Many caregivers receive offers of help, but it can be hard to figure out what other people can do. Make a list of tasks to be taken on, and assign a job to each person who offers to help you. You can get the assistance you need, and others will know they contributed in a meaningful way.

When you’re caring for someone with a condition as unpredictable as epilepsy, you might feel like you can never step away. However, breaks are essential to your mental health and well-being. Taking just 10 to 20 minutes to go for a walk or read a book can help you feel refreshed for the tasks ahead.

Taking a break to do what you love can also help you maintain your identity outside your caregiving duties. You’ll feel better and more like your old self, before epilepsy became part of your daily life. Participating in activities you enjoy doesn’t mean you don’t love the person you care for — it means you’re caring for yourself, too.

If you’re like many caregivers, it’s easy to let your own physical care slip. You might not be sleeping well, forget to eat when you’re busy, or grab junk food because it seems easier than preparing nutritious meals. However, neglecting your physical health will only make you feel worse.

Instead, do what you can to maintain good physical habits. Make getting enough sleep a priority, doing what you can to support a good night’s rest most of the time.

Stock up on nutritious, easy-to-access foods so you’re more likely to eat a balanced diet. When your body feels better, you’ll have more to offer the person you’re caring for.

If you can use technology to make daily life easier, do so. This might mean anything from ordering groceries online to using mobile apps that can help you track epileptic seizures and possible triggers. For example, a seizure alert device can let you know if your loved one needs assistance overnight, which may help you get more rest between alerts.

It may take some extra effort to set up technology so it can work for you, such as choosing items for a weekly grocery order. Setting aside time for these tasks or getting help with the initial setup can ultimately make your life easier.

Caregiving is hard. It may not always feel safe to say that, but there are spaces where you can be honest about your life without being judged. An epilepsy caregiver support group can be a good place to share the ups and downs of caring for your loved one with epilepsy.

You may also want to reach out to your doctor or choose a trusted friend you can confide in. Having a place to talk about the most difficult parts of your life means you don’t have to be alone with the hardest parts of being a caregiver.

Exercise can fall by the wayside when you feel caught up in or overwhelmed by caregiving duties. However, keeping your own body healthy and strong is important to your ability to care for your loved one. Daily exercise can help your heart, lungs, muscles, and bones get and stay strong.

You don’t have to go all out — even a short walk or a yoga routine can make a difference in how you feel and in your body’s ability to keep up with caregiving. You can even try doing some moves while watching TV with your loved one.

If you haven’t exercised before, start slowly and in small increments. Over time, you may be able to do more.

It’s easy to let your world shrink until it’s down to just you and the loved one you’re caring for. This might seem natural, but it’s not good for your well-being. Do what you can to maintain your social connections because they’re vital for your physical and mental health.

If you really don’t feel like you can leave your loved one, try connecting with people online. Real friendships formed online can be a source of support and may even become your epilepsy caregiver support group.

One member of MyEpilepsyTeam who did this said, “I’m a caregiver and find being part of this site very helpful. The posts often provide good info and give me insight. I sometimes post questions and get lots of support.”

Another shared, “I almost had a nervous breakdown, and I consider myself a strong person. I see a counselor on a regular basis and make regular lunch dates with my friends and keep a regular social circle for us.”

If you’re experiencing signs of excessive stress or burnout around caring for someone with a health condition, or you’re feeling resentful toward the person you’re caring for, talk to your doctor to get medical advice and mental health support. They may be able to connect you with a therapist who works with caregivers or talk with you about whether medication could benefit your emotional health.

If you aren’t feeling good about being a caregiver, support is out there. If your healthcare provider can’t offer assistance, reach out to the Epilepsy & Seizures Helpline at the Epilepsy Foundation. Its trained specialists can provide support and connect you with national and local resources to help you care for your loved one — and yourself.

Join the Conversation

On MyEpilepsyTeam, people share their experiences with epilepsy, get advice, and find support from others who understand.

How do you care for yourself as an epilepsy caregiver? Let others know in the comments below.