10 Tips for Family Caregivers: Caring for Those with Epilepsy

November is both Epilepsy Awareness Month and National Caregivers Month and since I like to multi-task, I thought this would be a good day to bring the two “awareness” months together.

This is going to sound crazy but I am stumped. Call it writer’s block or a brain freeze or the effects of it getting dark at 5:00 p.m. I am staring at a computer and have no idea what tips to give someone who is caring for someone with epilepsy.

This is Robert

This is Robert

Maybe it’s because epilepsy is normal to me. Robert has had epilepsy his entire life so seizures have never scared me but I know they can be scary. Now that Robert lives with me and Richard, I think I have to take it back that seizures are not scary. What scares me now is Robert’s long seizures (in his case, three to five minutes). His chest heaves as his breathing becomes labored, his hands twitch or tug at his clothes, he is unresponsive and the stop watch on my phone keeps racking up the seconds. The minutes. More minutes.

Okay, yeah, seizures can be scary.

Some of these 10 caregiving tips will focus on what to do when a person is having a seizure.

  1. Don’t panic. Reassure others in the area and explain what is happening. Robert’s seizures are called Complex Partial Seizures and they usually last 10 to 20 seconds. If you don’t know what to watch for, the seizure could easily be missed. During his last hospital stay, a nurse was helping him get dressed on discharge day. I was talking with the doctor but out of the corner of my eye I could tell the nurse was trying to get Robert to respond and he wasn’t answering her. I took one look at his head dropped down and to the right and his limp body and explained to her he was having a seizure. By the time I finished explaining this to her, he was awake and joking around with her. She looked surprised but I like to think she learned a little bit more about epilepsy that day.
  2. Keep the area clear. This is both during a seizure and in the general living area. When living independently, Robert has fallen on a lamp (which was on) during a seizure. As a guest in my small apartment many years ago, he fell on a glass tabletop. Through the years, he has hit the floor or sidewalk, dented walls with his head, fallen into coffee tables or tables and fallen against toilets so hard, he broke them. Robert lives with us now and is constantly supervised so it is no longer possible for him to fall on a lamp and sustain third-degree burns. His pathway is clear in case he has a seizure while walking and I keep him clear of glass or windows.
  3. Time the seizure. Even though Robert’s seizures usually last 10 to 20 seconds, I like to time them. If his seizure hits five minutes, I have medication to give him to stop the seizure. I have both Ativan and Diazepam – although I’ve only used Ativan for him so far.
  4. When to call the paramedics. It isn’t necessary to call 911 every time a seizure hits but if you are familiar with the seizures and a particular seizure is lasting longer than normal (and especially if they are longer than five minutes) or if the person has been injured or cannot breathe, call for help.
  5. Do not put anything into the person’s mouth. This is extremely important and also a good time to dispel the myth that people having a seizure can swallow their tongue. No they cannot. Not too long ago, I read a celebrity had helped someone with a seizure and they stuck a wallet in that person’s mouth so they wouldn’t swallow their tongue. I cannot believe this myth persists so help spread the word that it is not true!
  6. Turn the person on their side. If possible, turn the person on their side if they are on the floor (or have fallen) during a seizure. Move anything that might hurt the person out of the way.  Do not try to stop the person from moving.
  7. Keep a seizure log. Keep track of the time of the seizure, the behavior of the person during the seizure as well as after the seizure, anything that immediately preceded the seizure (such as eating or showering). This is useful to give to the neurologist and to try to track any seizure “triggers.”  Robert has a seizure almost every morning while getting cleaned up for the day. Seizures are not usually predictable so it is comforting to know I can “prepare” for the morning seizure. Probably one of the worst things about seizures is not knowing when they will strike. If anything, the log will allow you to look back to see if there are patterns to the seizures.
  8. Medical Equipment. Robert wears a helmet which has saved him from many head injuries.  Unfortunately, he didn’t start wearing one when he should have (which was when he was a child and well into young adulthood). If balance is an issue, then a walker may become necessary. I am holding off putting Robert into a wheelchair until absolutely necessary but we do use one when going on long excursions.
  9. See a neurologist regularly. It’s important to see a neurologist so he or she can adjust medications if needed or to inform the patient and caregiver of any new medications or treatments that might be available to help reduce the seizures.
  10. Educate yourself. One in 26 Americans will develop epilepsy in their lifetime. Three million Americans and 65 million people worldwide have epilepsy and 50,000 people in the United States die from epilepsy related reasons. These are just a few of the facts about epilepsy. There are several wonderful advocacy and educational organizations with lots more information on epilepsy and seizures. CURE (Citizens United for Research in Epilepsy) is one such organization and I was fortunate enough to be able to interview them for Epilepsy Awareness Month. For more facts about epilepsy and ways to help, please read the interview and visit their website.

I hope these 10 tips for those caring for someone with epilepsy have been helpful. Please let me know your own tips and experience with seizures and epilepsy in the comment section below.

Oh, and do me a favor and educate one person this month about epilepsy. Just work it into a regular conversation and tell them one fact. Epilepsy research is sadly underfunded and the more people know about epilepsy and talk about it the more research dollars we can get and the less stigma there will be about epilepsy.

Thank you!

[also posted on www.robertssister.com]

Profile photo of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

2 thoughts on “10 Tips for Family Caregivers: Caring for Those with Epilepsy

  1. Profile photo of CasandraCasandra

    I’m aware of all of these and thankfully was well-educated about how to help someone with a seizure before Marc started having them. However, it’s always good to have a refresher and to know I am still doing the right things.

    Reply
  2. Profile photo of CasandraCasandra

    Oh! And I just got an Rx for Ativan for Marc which I always felt I should have. So, I am even more excited that I have something to help him. He normally has enough of a tell before his seizures for me to help prevent them with medication.

    Reply

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