5 Self-Care Tips Every Epilepsy Caregiver Needs to Know

Self-care is essential for epilepsy caregivers

Caring for someone with epilepsy is more than a responsibility—it’s a profound and ongoing journey that shapes every aspect of life. For those who have walked this path for years, the role extends far beyond physical support for epilepsy; it’s about adapting, advocating, and enduring through the unpredictable nature of epilepsy. While the focus is often on the person experiencing seizures, the well-being of long-term caregivers plays a critical role, too.

For Lena, supporting her husband, Carlo, has meant years of learning how to balance his needs with her own. She’s come to realize that self-care isn’t just about personal well-being—it’s about ensuring she has the strength, patience, and energy to continue being the partner Carlo needs.

Self-Care Tip #1: Give yourself grace and take breaks when you need them

One thing that Lena has learned over the years is the power in giving yourself permission to explore your feelings. Your loved one’s needs may frequently take the spotlight through facing a diagnosis and exploring information about epilepsy treatment options. But you shouldn’t neglect your own feelings.

Dealing with the ups and downs of epilepsy can be stressful, so it’s important to find ways to manage stress proactively. Lena finds it helpful to prepare in advance to help make stressful situations less difficult when they come up.

Create a plan while you’re calm and clear headed. You can write out the specific steps you can follow to help get you through challenging moments when you might be feeling distracted or overwhelmed. This action plan should live somewhere easily accessible, such as a note in your phone or on your refrigerator.

If you’re in a stressful moment, it may be helpful to:

• Give yourself permission to take a break without feeling guilty
• Take deep breaths or do some gentle stretching
• Go for a walk
• Call a friend
• Realize you can return to your challenges when you feel more calm

“I really try to be aware of my own emotions and recognize when I need to take a step back,” says Lena. Taking a few minutes for yourself benefits you as well as your loved one.

Self-Care Tip #2: Respect your partner’s autonomy

One of the most difficult times for Lena and Carlo was when Carlo’s seizures stopped responding to his medications after years of taking them. He learned resective surgery for epilepsy, which involves removing a small part of the brain where seizures occur, was too risky because it could damage his memory. Lena remembers going through a grieving process along with Carlo.

“When I think about that time, I always think about the stages of grief,” she says. “There was anger and denial and bargaining. We both went through all of that. It was really difficult. Now, I think we’re finally at acceptance.”

It’s common to experience tension along the way from grief to acceptance. Discussions about driving with epilepsy or doing certain activities alone can be especially tough. Lena says it’s essential to be realistic, especially for spouses of people living with epilepsy.

“There are going to be hard discussions because there is a fine line” for spouses, she says. “I tell Carlo, ‘You are your own person and you are a capable adult. I’m not your mother. I can’t tell you what to do. But also, I need to make sure you’re safe.’”

Self-Care Tip #3: Find strength in embracing a new normal

A crucial part of Lena’s self-care plan is looking for positive aspects of living with epilepsy. “One great thing I’ve noticed is that our kids are learning how to handle stressful situations and how to have compassion for somebody when they’re disabled,” she says.

Her young kids stay calm when Carlo does have a seizure. “They are able to verbalize, ‘this is scary, but dad’s going to be OK,’” she says.

Lena says she and Carlo found peace when they accepted that seizures will likely always be a part of their life. “It took some time, but eventually, we said, things are going to look different, and that’s OK,” she says. “We can make this work.”

Self-Care Tip #4: Look for ways to simplify your daily life

Lena and Carlo have learned the importance of simplifying their daily life whenever possible. Lena suggests to:

• Use delivery services: To eliminate the possibility of Carlo having a seizure at the grocery store, Lena and Carlo use a grocery delivery service.
• Find convenient transportation: Lena recommends using ride-sharing or other transportation services to get around.
• Accept help when offered: Lena advises people to say yes when someone offers help. “His parents and my parents are very good about making sure he’s safe if I’m at work or in a meeting,” says Lena.
• Ask friends for a hand: Try asking a neighbor or a friend to check in on your loved one if you don’t live near family.

Self-Care Tip #5: Reach out for support

Lena has sought support from others who have similar experiences being a caregiverfor someone living with epilepsy. Talking to other caregivers has helped reduce her anxiety and reminded her that she isn’t alone.

“When I’ve really struggled in the past, I’ve enjoyed talking to other spouses of people who have epilepsy,” says Lena.

Lena says she also tried to support others when she can, whether that’s other caregiversor educating others about living with epilepsy.

When Carlo has a seizure in public, Lena isn’t ashamed and doesn’t try to hide it. Instead, “I explain what’s happening to other people and what I need them to do to help me. I want people to be aware of what’s going on.”

Raising epilepsy awareness in your community can help people learn what to do in these situations.

Lena has also benefited from offering support to others during some of the most difficult times. “It’s therapeutic to be available to other spouses who ‘get it.’ I’ve enjoyed making those connections,” she says.

She recommends:

• Talking to a therapist or someone who understands what you’re going through.
• Seeking out another spouse, parent, or caregiver who can relate to your experiences.
• Exploring the Epilepsy Foundation’s many resources, including information about epilepsy and epilepsy support groups in your area.