Father with son on his shoulders looking out into the ocean.

7 tips for epilepsy caregivers

An epilepsy diagnosis in the family can be overwhelming at first. Some people with epilepsy do not need much help, if any, while others need round-the-clock care. If you’re providing care for a loved one with epilepsy and don’t know where to begin, here are 7 tips to help you get started.

1. Learn first-aid protocol

Understanding what to do when a seizure occurs is crucial for ensuring the person you’re caring for (and possibly others) does not hurt themselves. Seizure first-aid is simple, and in most cases an ambulance does not need to be called. 

When someone has a seizure:

  • Time the seizure — How long the seizure lasts will determine whether or not you need to call an ambulance
  • Cushion their head — Head injuries are common during seizures especially when there are hard floors or objects that can cause harm
  • Roll them into recovery position — To prevent choking, roll them onto their side if they have something in their mouth or after they stop moving
  • Stay with them until the seizure stops — They may be confused or disoriented afterwards. Help them remain calm and safe

Signs of an emergency that indicate you need to call ‘000’ immediately include: 

  • A seizure that lasts for more than five minutes
  • Difficulty breathing
  • A seizure that takes place in water
  • Injury during a seizure (e.g., trauma to the head)

Check out this blog containing downloadable resources including “When to call 000” and “Seizure first-aid” posters that can be printed and displayed in the home, classrooms, or office.

First-aid myths

There are several myths surrounding the first-aid protocol for safety that can make it confusing to know what to do. Let’s debunk these myths. 

Common myth #1: People can swallow their tongue during a seizure

It’s physically impossible for someone to swallow their own tongue, whether or not they’re having a seizure.

Common myth #2: When someone is having a seizure, put something in their mouth

You should never force any object into someone’s mouth during a seizure. Doing so could cause injury to the person, they could swallow the object, or bite your hand in the process.

Common myth #3: You should restrain someone who is having a seizure

You should never restrain someone who is having a seizure. However, you should take precautions to make sure they are in a safe place, such as moving furniture, moving sharp objects, and placing something soft under their head.

2. Educate family and friends

Even though epilepsy is very common, it is often misunderstood. The lack of awareness can make those who are uneducated about epilepsy anxious or even afraid. The uncertainty is usually because they don’t know what to do if a seizure were to happen. 

By teaching basic seizure first aid, you can help family and close friends feel confident in the event of a seizure, and better understand the condition. Being an advocate for the person you are caring for is one of the most helpful things you can do. This will help them, and the people they are around, feel more at ease and better prepared to handle a seizure. 

Father with son on his shoulders looking out into the ocean

3. Track seizures and medications 

Keeping a detailed record of both seizures and medications for the person you’re caring for is important in helping healthcare providers better manage their condition. 

The following information should be carefully documented:

  • What happened right before the seizure. This can help doctors determine what triggers there may be so that they can be managed in the future
  • The date and time the seizure happened
  • How long the seizure lasted 
  • The behaviour of the person following the seizure
  • All medications the person is on, the dosage of each, and time of day each medication is taken

Ensuring that the exact dose of medication is taken on time is crucial in controlling seizures and gives the doctor of the person you’re caring for an accurate picture of how well the medications are working and if any adjustments need to be made. 

Most people with epilepsy can’t remember what happened right before, during, or immediately following a seizure. One way to keep track of seizures and medications is with the Seer app. You can record detailed information about each seizure, set up medication reminders, and gain understanding through insight reports. The more information there is, the better the seizures can be managed. 

4. Think safety

Seizures are often unpredictable, so preparing safe spaces in the home will reduce the likelihood of injury. 

Here are a few ways to increase safety in your home:

  • Install padding on sharp corners
  • Carpet floors or area rugs to soften a fall
  • Make sure fireplaces have fire screens 
  • Use heaters that are designed to turn off if tipped over
  • Make sure all smoke alarms and carbon monoxide detectors are working
  • Ensure an up-to-date fire extinguisher is handy
  • Hide a spare key outside the home in case you or someone else needs to get inside quickly

When out and about, always be aware of the person’s surroundings and take note of potentially dangerous situations.

5. Develop a seizure management plan 

Having a plan is the best way to inform others about a person’s seizures. Their seizure management plan should have the following information: 

  • The type of seizures they have been diagnosed with
  • All known seizure triggers
  • How to care for them during a seizure
  • Signs that the situation is an emergency and steps to take

Ensure that anyone else involved in the plan is aware and knows what their role is. For instance family members, friends, secondary caregivers, and health care providers, among others, may be a part of the plan.

Make sure the person you’re caring for always carries a copy of the plan with them either in their wallet or purse just in case you are not there. A copy of their seizure management plan should also be provided to their school or workplace.

At least once a year, practice an emergency drill and the steps you would take if there were an emergency. Coordinate with the household to make it as close to reality as you can.

Two people looking through documents and taking down notes.

6. Encourage participation

Having epilepsy doesn’t always mean not being able to participate in many activities and sports. In fact, it is an important part of maintaining physical, mental, and emotional health. 

Recreational activities should always be cleared by the healthcare provider who is most familiar with the person’s medical record and seizure triggers. Depending on the severity of the seizures, there may be some activities, such as contact sports, that are off-limits or activities that a buddy will need to be present for, such as swimming. 

7. Don’t forget to take care of yourself

There is no doubt you love the person you are providing care for, but you need to make sure you are taking care of yourself as well. The constant worry and stress of unpredictable seizures can be exhausting, and that is perfectly normal. Take time for yourself. Ensure you are getting enough sleep, eating a healthy diet, and taking the needed time to relax and recharge regularly. Most importantly, ask for help when you need it!

Bonus tip

Being an epilepsy caregiver is not a journey you have to take alone. It can be helpful to speak with and develop relationships with others who understand what you are going through. It is important that you have the support you need as well. 

Find a local epilepsy support group where you can have discussions and get advice from epilepsy caretakers, just like you!