If you love and care for someone who has been diagnosed with epilepsy, you know how stressful it can be when you’re anticipating the next seizure or trying to help them access good medical care. Unfortunately, this stress can take a toll on you.
Learning how to care for yourself, even as you continue to care for your loved one, can benefit both of you. In this article, we’ll discuss why caregiving can be so hard and offer tips for improving your mental health, quality of life, and overall sense of wellness.
Caring for someone with epilepsy can be stressful and 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 them 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 end in sight. Caregivers can find themselves experiencing any of a number of symptoms of excessive stress, including:
One MyEpilepsyTeam caregiver described their feelings: “My partner has epilepsy, and I’m a caretaker 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.”
No one wants to — or should have to — experience these emotions. When caregivers learn to care for themselves, too, they can minimize these symptoms, feel better about themselves and the loved one they care for, and improve their quality of life.
You can take several steps to invest in self-care, even as you are managing epilepsy for your loved one.
As a caregiver for someone with epilepsy, your day might be more packed than others’. Although you may not be comfortable asking people to do your caregiving duties, you can get support by asking for help with other tasks. Maybe a friend or family member can pick up your 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 asks to help. 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 that can be 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 refresh you for your tasks ahead.
Taking a break to do what you love will 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 love doesn’t mean you don’t love the person you care for, but it helps you love yourself, too.
If you’re like many caregivers, you find it easy to let your own physical care slip. You might not be sleeping well, or you may forget to eat when you’re busy. Maybe you grab junk food because that 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 it takes to ensure a good night’s rest most of the time. Stock up on nutritious, easily accessed foods so you’re more inclined to eat a healthy diet. When your body feels better, you’ll have more to offer the person you’re caring for.
If you can leverage technology to make your daily life easier, do so. This pertains to everything from ordering groceries online to using mobile apps that can help you determine what triggers epileptic seizures. For example, an alarm for your loved one’s bed can alert you if they have a seizure overnight, allowing you to sleep well until the alarm summons you.
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. Sure, it may not always seem safe to say that, but there are spaces where you can state what is true about your life without being judged. An epilepsy caregiver support group can be a great 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 in whom you can confide. Having a place where you can talk about the most difficult parts of your life means that you never have to be alone with the hardest parts of being a caregiver.
Exercise can go by the wayside when you feel caught up in or overwhelmed by caregiving duties. However, keeping your own body healthy and strong is vital to your ability to care for your loved one. Daily exercise can help your heart, lungs, muscles, and bones get and stay strong.
No need to go all out — even a short walk or a yoga routine can make a huge difference in how you feel and in your body’s ability to keep up with the caregiving that is so important to you. You can even try doing some moves while watching TV with your loved one. If you haven’t exercised before, take it slow and in small increments. Over time, you’ll 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 it takes 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 great support. One member of MyEpilepsyTeam 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.”
If you’re experiencing signs of excessive stress or burnout, 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 to a therapist who cares for caregivers or offer you medication that will benefit your emotional health.
If you aren’t feeling good about being a caregiver, support is out there. If your health care provider can’t offer assistance, reach out to the epilepsy helpline at the Centers for Disease Control and Prevention (CDC). They should be able to connect you with someone who can point you to the resources you need to best care for your loved one — and yourself.
MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 114,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.
Are you caring for someone who has epilepsy? What steps have you taken to also care for your own health and well-beign? Share your experience in the comments below, or start a conversation by posting on your Activities page.