Caring for yourself when a child has epilepsy

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Adjusting to a child’s epilepsy diagnosis can be challenging and parents often put their own needs last. However, it is important for parents to take care of themselves too. Learn about self-care suggestions for parents.

Key points

  • Signs of too much stress include extreme sadness, anger, eating problems, confusion, anxiety, isolation, physical pain, and feeling overwhelmed.
  • To relieve stress, try talking to others, booking a time with a counsellor, sharing responsibility with others in the family, attending support group meetings, maintaining good physical health and taking time for yourself.
  • Communicating and spending time each day with your spouse or partner can help ease stress and will help maintain a strong relationship.

Epilepsy is a complicated chronic health condition. In addition to the impact of your child’s seizures on the family, there may be concerns about the possible negative effects of epilepsy and anti-epileptic medications on the child’s learning and emotional well-being.

When your child is diagnosed with epilepsy, there are several things that happen. You may need to:

  • Quickly adjust to a new reality and understand the limitations that come with an epilepsy diagnosis
  • Establish a support system, including family, friends, the epilepsy care team and support groups of other parents who have gone through the same experience
  • Educate yourself about epilepsy and the care your child needs, both by consulting resources such as this website and by talking with the epilepsy team
  • Build a solid relationship with members of your child’s epilepsy care team that enables you to feel comfortable asking questions and trust that the team has your child’s best interests in mind
  • Inform others (family, friends, caregivers, school) about your child’s condition so that they are also able to assist you in caring properly for your child
  • Put systems into place at home, at school and in the community to make it easier to care for your child and manage this new situation
  • Find ways to relieve the stress that naturally occurs when adjusting to any new situation

Each of the above tasks can cause additional stress. It is normal for parents and caregivers to feel overwhelmed or stressed because they are concerned about their child with epilepsy and trying to make sure they are cared for. Some feelings and concerns you may experience include:

  • Struggles with emotions about why this has happened, including anger, sadness, or guilt. Parents may feel guilty and wonder whether something they did or did not do during pregnancy contributed to their child’s epilepsy.
  • A loss of control because you cannot help your child by stopping the seizures.
  • Concern about whether you are doing enough to help your child by finding a treatment to stop their seizures.
  • Worry about having to hand over care of your child to other people, such as teachers or day care providers, who may not have the same knowledge about seizures and epilepsy.
  • Worry about whether your child’s health-care team is offering the best care for your child and stressing over making the best medical decisions for your child.
  • Physical and mental exhaustion.
  • Worry about how to support your child’s emotional well-being and social life.
  • Marital or relationship stress or worrying about the impact on your other children.
  • Fear about how you will manage an emergency such as if your child has a prolonged seizure.
  • Worry about who to contact and how to contact an epilepsy team member about ongoing questions related to your child’s epilepsy.
  • Concerns about how to parent your child with epilepsy and if/how it is different from parenting other children.
  • Wondering what you should tell friends and family.
  • How to settle in to a "new normal" for your family meet the needs of other family members while caring for your child with epilepsy.
  • Worry about the impact of epilepsy on your child’s future.

Signs of too much stress

As a parent, you may become so busy caring for your child with epilepsy and the rest of your family that you forget about your own basic needs. The time of initial diagnosis and periods when your child’s seizures are not well controlled can be particularly stressful.

Persistent physical stress (lack of sleep, poor eating habits) and mental stress (heightened worry and monitoring) can make you more vulnerable to illness. Your mental and physical well-being are important not only for yourself but also so you can positively parent your child with epilepsy and your other children.

If you experience any of the following feelings for more than a few weeks, it may be a sign that your own needs require more attention:

  • Sadness
  • Anger
  • Eating problems (e.g., loss of appetite)
  • Confusion
  • Anxiety
  • Physical pain
  • Feeling overwhelmed

Contact your family doctor for help with these feelings. You may also be able to use some of the approaches listed below to help you relieve stress.

Stress relief approaches

Here are some approaches that can help you to manage your stress.

Talk to others

Talking to someone you trust and rely on is one of the best ways to deal with your feelings. This can be a family member, friend, support group, social worker or other helping professional.

Share the responsibilities

Whenever possible, it is helpful if both partners are involved with epilepsy care routines. Feelings of resentment, fatigue and stress can build up if one parent has to do all the planning and work. Working together can help prevent exhaustion and feeling overwhelmed. Giving each other time away from care duties can provide much needed breaks. You can also plan to spend time together, apart from your child or children, just as you did before.

In single-parent families try to arrange for another family member or a close friend to regularly help with your child’s care, if possible. Make sure that babysitters and other caregivers know that your child has epilepsy and what to do in case of a seizure.

Use respite services

Respite services provide parents and caregivers time for themselves while providing their children with opportunities to meet with other children or become involved in the community. Respite care can provide temporary relief from the physical and emotional demands involved in caring for a child with epilepsy.

For more information, please see the "Resources and Support" page.

Attend support group meetings

For some people, a support group is a good place to express feelings, frustrations and worries, and a good opportunity to learn how other parents of children with epilepsy manage. Your epilepsy care team can provide information about support groups for parents, children or their siblings.

If you are more comfortable speaking to someone one-on-one, you may be able to find another parent through a local epilepsy organization or your child’s treatment team. There are also many online and social media networks that you can access.

Maintain good physical health

Healthy eating, getting enough sleep, regular physical activity and opportunities to engage in activities that help you relax are important factors in maintaining your good physical and mental health.

Relax and take time for yourself

As difficult as it may seem, try to make some time for yourself each week to reduce your stress. This can include taking time with your spouse or partner or taking time to be alone. Sometimes epilepsy may seem to take up every minute of every day. You might feel as if you have no time for the things you have always loved to do. Taking this time for yourself can help to refresh yourself so that you can continue caring for your child to the best of your ability.

You might have some favourite stress relief practices already or you may also wish to try one of the following:

  • Massage therapy
  • Walking, yoga or other exercise
  • Prayer or meditation
  • Warm baths
  • Listening to or playing music
  • Humour
  • Watching movies or television
  • Pursuing a new or favourite hobby

See a counsellor (family or individual)

Sometimes the stress of a child’s seizures feels so overwhelming that the coping strategies that have worked for you in the past are no longer working. If this is the case it may be helpful to speak to a counsellor such as a social worker, psychologist or psychiatrist. You may wish to do this on your own, with your spouse or partner or with your family.

Speaking to a counsellor may offer you and your family an opportunity to talk about your situation with a neutral third party and work toward identifying strategies and finding solutions to some of your difficulties. Children’s hospitals and epilepsy clinics usually have a social worker on staff to assist families in dealing with the impact of epilepsy in their lives.

Last updated: January 25th 2022