Epilepsy In The Family

“Family: Where life begins and love never ends.” – Unknown

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When epilepsy makes an unexpected crash landing into the life of a family member, it causes a ripple effect and the entire family is affected.

Epilepsy doesn’t just affect the person who is diagnosed. Epilepsy can also greatly affect the entire family as a whole. It’s important to know that those who have epilepsy do not shut themselves away from the world. The unsettling feelings and experiences that come with having epilepsy branch out to the family as well.

WHAT IS IMPORTANT AS A FAMILY

REACTION AND ATTITUDE – How a family member reacts to and around the person with epilepsy may greatly influence the severity of their epilepsy.
TALKING OPENLY ABOUT EPILEPSY – It is important to have the conversation. Never brush it under the rug. Help family to understand. Family may have no knowledge of the condition. How much you tell them depends on how much you think they are willing to take the time to listen for. It is important to stress the importance of the condition, and cater the explanation to the family members’ age level. Encourage family to ask any questions or concerns they may have.

 

Statistics – Chronic Condition

  • Nearly 1 in 2 Americans (133 million) has a chronic condition
  • By 2020, about 157 million Americans will be afflicted by chronic condition, according to the US Department Of Health And Human Services. Chronic Care in America
  • That number is projected to increase by more than 1% per year by 2030, resulting in an estimated chronically affected population of 171 million. Chronic Care in America
  • 96% of them live with a condition that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. 2002 US Census Bureau
  • 60% of the chronically affected are between the ages of 18 and 64.
    Chronic Care in America
  • 90% of seniors have at least one chronic condition and 77% have two or more chronic conditions.
  • The divorce rate among the chronically affected is over 75%
    National Health Interview Survey
  • Depression is 15-20% higher for the chronically affected than for the average person. However, the significance of one’s faith has shown to lower one’s risk of depressive symptoms and aid one in better handling a stressful medical event.
  • Various studies have reported that physical condition or uncontrollable physical pain are major factors in up to 70% of suicides. And more than 50% of these suicidal patients were under 35 years of age.
  • Four in five health care dollars (78%) are spent on behalf of people with chronic conditions.
  • Those who use their religious faith to cope are significantly less depressed, even when taking into account the severity of their physical condition. In fact, the clinical effects of religious coping showed the strongest benefit among those with severe physical disability. Some 87 patients hospitalized with serious condition who also then suffered depression were followed over time in another study. The patients with a deep, internalized faith recovered faster from the depression, even when their physical condition wasn’t improving.

TIPS FOR THE FAMILY

PARENTS

As a parent, you have a rewarding and heroic job! A demanding job. It is important to remember to take breaks. All parents need moments to recharge and regather. If parents choose not to take time to unwind and relax, stress will build and intensify. Consider setting aside time every week specifically for you. Make it set in stone.

TAKE TIME TO…

  • Go for a walk
  • Take a relaxing bubble bath
  • Go out with some friends
  • Listen to relaxing music
  • Read a book

TIPS FOR PARENTS

  • Talk to other parents who have children with epilepsy
  • Join a support group (Online or locally) for you, and/or the whole family.
  • Be supportive and helpful of your child’s emotions such as sadness, anger, depression, anxiety, frustration, disappointment, worry. Guide them through these emotions as best as possible.

BROTHERS/SISTERS

Brothers/Sisters you have an amazing responsibility in looking out for your younger/older brother or sister who lives with epilepsy! Do not be afraid but rather know that you can be an awesome helper to make sure that no one else becomes afraid should a seizure occur by getting ahold of an adult straight away to assist your brother or sister or anyone you come in contact with having a seizure.

It is important to involve your brother and sister in the care of your child with epilepsy. Why? This is to help them feel important, and would also be a great support to you as parents. Brothers and sisters need to have the feeling of being included in helping their brother or sister take control of their epilepsy but they shouldn’t feel as though they are responsible for taking complete control of it.

TIPS FOR BROTHERS/SISTERS

  • Take time to talk to your brother and/or sister about epilepsy. This can help them to feel much better and ease any frustration they might feel about your epilepsy diagnosis.
  • Take into consideration that your brother and or sister could fear catching epilepsy because they don’t fully understand the condition. They may believe myths and stigmas held still to this very day.
  • Explain to your brother and/or sister what epilepsy is and is not.

 SPOUSES

You are the rock of the family! You are the pillar of strength and the source of motivation. It is not only important to keep it together but to also remember to take great care of yourself as well as your partner, should you have a special someone who is living with epilepsy.

TAKE TIME TO…

  • Explore a new hobby
  • Listen to music
  • Read a book
  • Visit family and/or friends

TIPS FOR SPOUSES

  • Talk to other married couples who are on the journey with epilepsy.
  • Join a support group (Online or locally) for you, your spouse and/or the whole family.
  • Be supportive and helpful of your spouses’s emotions such as sadness, anger, depression, anxiety, frustration, disappointment, and/or worry. Guide them through these emotions as best as possible.

IMPORTANT INFORMATION FOR THE ENTIRE FAMILY

  • Be sure to give a clear understanding of what epilepsy is for the family.
  • It is important to stress that epilepsy is in no way contagious. It is a myth.
  • Seizure first aid is very important and each family member aught to know what to do.
  • The family must know the type of seizure(s) you have, if you experience auras, what a seizure looks like, and how often you may experience seizures.
  • A list of medications is very important, the dosage that you take, who is in charge of giving the medication and how often you take the medication. Medication side effects that you might experience is also important.

HOW CAN FAMILY SHOW SUPPORT

  • Attend events such as epilepsy walks your family member living with epilepsy
  • Listen to any thoughts or concerns you might have regarding your epilepsy
  • Attend doctor visits with you
  • Build greater awareness by sharing epilepsy awareness facts via social media (Facebook, Twitter, Instagram) and with friends.
  • Wear the color purple during the month of November, Epilepsy Awareness Month and March 26th Purple Day
  • Make a donation to an epilepsy organization on behalf of your family member living with epilepsy.
  • Post videos, photos, and stories on behalf of or with your family member living with epilepsy.

Want to provide a seizure first aid guide for the whole family? The Epilepsy Network has the perfect step-by-step guide available for you to print! Click here to ensure each family member has theirs now!

Do you have an amazing and supportive family? How have they helped you along your journey? What advice do you have for families?

Share your thoughts in the comments section!

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