Living with seizures and epilepsy is a family affair. It affects everyone to some extent but in different ways. The person who has seizures may feel helpless, scared, worried or a host of feelings. Family members and close friends may feel these things too. The hidden and unpredictable nature of epilepsy makes it even harder for families. They may wonder if what they are seeing is "real," serious, or just one of "those things" since it's not present all the time. Many of the symptoms are not visible to observers, thus family and friends may not know what to look for all the time.
Often people feel scared and helpless. You can't "fix" or get rid of seizures easily, if at all for some people. While it's important to know what to do during a seizure, life between seizures can be a mystery. Do you help and protect them to prevent injury or lessen seizure triggers? Or do these steps lead to overprotection and could that be harmful? Where is that fine line between encouraging independence yet being realistic about life's risks and the impact of seizures?
There are so many questions that need to be addressed by families and friends. It's also important to realize that each family looks and feels different too. Is your family made up of parents and a child with epilepsy, with or without siblings? Or maybe the family is an adult child with seizures living with or receiving help from parents or siblings. Or a family can mean a person with seizures and their friends or extended family. Your family may also include our epilepsy community - people who are there for you to talk with and who give and get support.
This week we'll be talking about epilepsy and the impact it can have on the entire family. Join us as we #DareTo Look Beyond Seizures. Be part of the conversation with hashtag #EpilepsyAndFamily.
Here's a few of my thoughts for family members and friends to consider:
For people with seizures
- You are part of a family. While coping with epilepsy will affect everyone, other family issues and relationships are important too.
- Talk to your family and make sure you're included in family discussions about you, the epilepsy and other family issues. Remember that epilepsy is only a part of you and your family.
- Recognize other people's feelings and talk to them about what they experience and how they feel. Maybe they don't understand what it's like for you, or you don't understand what the seizures mean to them. Talking helps everyone!
- Watching someone have a seizure often leaves people feeling helpless because they don't know what to do and feel scared and sad that someone else may be hurting. Family and friends should all learn how to respond to a seizure, including what they should do and what they should not do. Create a Seizure Response Plan, then practice what to do when a seizure happens just like you would practice fire drills. Read about Seizure Drills.
- Go over these drills as people get older or seizures change. A family member's or friend's response may need to be adjusted as siblings grow and friendships change.
- Children as young as 3 years old can learn what to do. While every family needs to assess their own needs and abilities, don't leave children out. Young children can be taught how to push a button on a phone to call 911 or just rub their parent's arm to provide comfort after a seizure.
For parents of a child with seizures
- Your job can be so hard juggling multiple roles and responsibilities.
- You are a mom or dad and need to teach your children life skills, self- discipline, responsibility, teamwork, having fun, and more. The list is endless. Don't let seizures stop you from doing this with your child who has seizures. Yet, your child's developmental level and seizures may alter how and when you work on these critical life skills and if they need to be adapted to your child's needs.
- Parents are also the "managers" of their child's health care. You hold a central place on the health care team and as an advocate for your child. This is a lot of responsibility and you may need to learn new information and skills to navigate systems and situations. Think about who is on your health care team and how you want this to function
- Parents may also need to care for other children or their own parents. They may be juggling work in or outside the home too. Don't lose this part of your life by putting all your focus on the child with epilepsy. Finding balance is critical and you may need help to do this. Don't be shy asking for help.
- You have other relationships that will need attention to have a healthy family. This may be your relationship with your spouse or partner, best friend, or other caregivers. Don't leave them out. Find time to spend with them to nourish those relationships and yourself in the process.
- You need attention. You can't do it all. Too often parents put everyone else's needs first, then there is no time left in the day for your own needs. How often do you skip meals, not exercise, get too little sleep, break dates with friends, or miss your own health appointments? Try not to let this happen. When you are making out your to do list for your family, put your own time and appointments in first, then schedule in everyone else's. Schedule a massage, give backrubs as part of family time, or go for walks. Me time doesn't need to be fancy or expensive; it just needs to be there.
Grandparents, aunts, uncles, cousins and close friends
- What would we do without you? You are often called upon to help out and do so selflessly. Pitching in when someone is sick. Driving to appointments and running errands. Taking care of other children. Visiting your loved one in the hospital. Yet how much do you know about epilepsy and seizures? Do you have a chance to ask questions? Do you have someone to talk to about your feelings and how epilepsy affects you? You are important members of the family and need attention too!
Children of parents with seizures
- Epilepsy may leave a large imprint on your life in ways that you'd never anticipate if your parent has uncontrolled seizures. Young children of a parent with seizures may assume more responsibility in the family. They may not be able to take part in after school or community programs if their parent doesn't drive and thus can't take them. At times, a child's sense of security may feel threatened. Young children and adolescents of parents with seizures are part of the team too. Their needs must be considered and help directed appropriately. Counseling and support groups for children are available and can be a great help to many families. Learn more about when mom or dad has epilepsy.
Adult children of a parent with seizures
- If seizures are not controlled, you may continue to be a key part of your parent's team and be a caregiver in some aspect. The issues are different because of your relationship, and you may be juggling the varied roles and responsibilities of being daughter or son, caregiver, driver, and supporter. You may also be asked to take on more formal responsibilities as health care proxy, power of attorney, or guardian. These are issues common to adult children of parents as they age, but there may be epilepsy specific issues and needs that arise. As these come up, talk to your parent's epilepsy team and ask to meet with a social worker skilled in these areas. Get connected with your local Epilepsy Foundation affiliate too!
This list only touches on many of the family issues in epilepsy. Lissa Kapust, a friend and social worker in Boston, taught me that family members are the "hidden patients" that are too often overlooked. Let's all work to change that. Families are our treasure and we need to nurture and support them! #DareTo Look Beyond Seizures and be part of the conversation at #EpilepsyAndFamily.
Best wishes for a safe and healthy week.
Patty Osborne Shafer RN, MN
Associate Editor/Community Manager