Caring for a child with epilepsy can be very difficult, especially if the seizures are severe or you must provide 24-hour care at home. Carers of children and teens with epilepsy often find managing their child’s illness stressful and it can really affect your quality of life.
While being a carer is often wonderful and rewarding, it is totally understandable to sometimes feel frustrated – this is a perfectly normal emotion. Caring for someone with epilepsy can affect all aspects of your life, including the time you would have to yourself. However, remember that you are not alone and there is help out there if you are struggling.
Here are 5 tips when caring for children and teens with epilepsy.
Caring for a child with epilepsy: 5 tips
Every child’s epilepsy is different and so are the circumstances of their carers. For specific advice about how to look after the child you care for, speak with your physician. The following five tips can give you a place to start.
- Get the most from your patient-doctor relationship
Your child’s neurologist or epilepsy specialist will be focused on helping the child you care for live seizure-free. Until the child is an independent adult, you have an important role in that relationship. If you can, try to:
- Accurately record all information about seizures, triggers and medication (apps like Epsy help you do this)
- Take notes during appointments with the doctor – you might want to record them on your cellphone
- Learn as much as possible about epilepsy and treatments – organizations like the Epilepsy Foundation have tons of information on their website
- Encourage your child
If your child’s seizures are controlled by medication or other treatments, they may be able to do the same activities as other children. However, some children and teens with epilepsy need 24-hour care at home which makes that harder to achieve. Helping your child take up new hobbies can greatly boost their self-confidence. Your local epilepsy foundation can help provide resources and may offer special summer camps which offer a host of activities built around a network of medical support. Look for opportunities near you here.
- Treat epilepsy with pride
Epilepsy is not so well understood in society, and carers sometimes prefer to keep their child’s condition private. This is understandable, yet being open about epilepsy can be a valuable learning experience for your child. Depending on your child's age and personality together you may decide to share your experience with epilepsy with family, close friends, or schoolmates. If you do it can spread awareness, and if your child ever has a seizure when you’re not around, other people will know what to do.
- Care for yourself
Caring for others can be tiring. It’s therefore important to set aside time to unwind – being more relaxed lets you offer the best care possible. If you have a spouse, parent or a trusted friend who can look after your child as little as one afternoon per week, that can make a big difference.
- Find support
There are many support groups for carers of people with epilepsy across the nation, both in person and online. If you do find yourself struggling, it can be valuable to look for mutual support from other people who know what you’re going through.
Recognizing the importance of carers
Carers of children and teens with epilepsy play an essential but often unrecognized role in helping manage this condition - there’s no doubt that caring for a child with epilepsy is tough. Fortunately, there are more resources than ever providing help and support. This doesn’t necessarily make being a carer any easier, but can give you that extra boost when it’s needed.