Dear Parents of Adults Living with Epilepsy,

My story is about a family that fought to help their son, John, get his seizures under control. John began having seizures when he was 18 years old. We never found the cause of his seizures. At first, John only had absence seizures. He loved rap music and sometimes he would just start rapping but it didn’t make sense – we then realized he was having a seizure. Then his seizures got worse and he started having convulsive seizures. The seizures were relentless. He became irritable and his personality changed. We struggled and didn’t know what to do. When he became violent as a result of his epilepsy, we were simply told to go to a psychiatrist.

CarmichaelPhoto

The last three to four years of John’s life were very difficult in that he had at least one tonic-clonic or grand mal seizure a week, possibly more. His mental condition was deteriorating. He was very paranoid with severe temper outbursts and anger management issues. Our efforts to get the medical doctors and mental health counselors to communicate with each other were ignored and simply never happened. As a family, we desperately needed help in understanding what was happening to John mentally. He was on two medications and refused to take a third due to the horrible way he felt with the meds.

On June 5, 2012, John lost his life to SUDEP (sudden unexpected death in epilepsy). He was only 39 years old. I don’t want to scare families; rather, by sharing John’s story, I want to lend insight to parents of adult children with epilepsy. I hope to initiate open and honest conversation about the challenges epilepsy can bring and struggles it can create for families. I want to provide information about the tools and resources available.

#DareTo Know About the Treatments and Resources Available

I am a registered nurse and know about seizure first aid, but even with my training, I didn’t really know about the treatments and resources available for treating epilepsy. Unfortunately, professionals never talked to our family regarding how to protect John or what to do in case his seizures did not stop. We thought calling 911 was the only option we had when John’s seizures didn’t stop within a few minutes. No one ever counseled us in the use of rescue medicine, like Diastat, or keeping it on hand for emergencies.

Learn more about all the different treatment options available and demand to see an epilepsy specialist if your loved one continues to have seizures. One seizure is one too many.

#DareTo Know How to be an Advocate

Families need to drive and insist on better communication between doctors, people with epilepsy, and caregivers — which includes family members and other doctors like therapists. When your loved one is in the hospital, you need to know when doctors are making rounds and be available to discuss any issues. Any time you meet with a doctor, prepare a list of questions and concerns so you can address each. Write down the responses to ensure you don’t forget anything. Also ensure you give the doctor as much information about your loved one’s history as possible. This empowers doctors to provide the best care. Request case management from your hospital to ensure there is follow up after your loved one leaves the hospital, that your questions are answered, and that you understand what to expect when you return home.

If you have an adult child, it is important to know how to navigate Health Insurance Portability and Accountability Act (HIPAA) regulations when serious health information needs to be shared and discussed. As a nurse and employee of Abbott Laboratories, I was very aware of HIPAA regulations. Doctors only have a brief snapshot of people with epilepsy. Families can offer more information and describe seizures that our loved ones do not even remember. Writing letters to the doctors describing seizure frequency and type, as well as side effects you witness, can do this. If under HIPPA your loved one has told the doctor not share information, the doctor will not be able to respond to you or to update you on the treatment progress, but hopefully he or she can use the information to have a full picture and to provide better care.

It is also important to have your loved one sign a medical power of attorney so you are authorized to speak to medical providers and make medical decisions. This is particularly important if you have an adult child since you will not be provided any information or voice in treatment without it.

Find more information about HIPAA. 

Learn about giving someone medical power of power of attorney.

#DareTo Understand the Impact of Independence

As parents, we need our children to know we aren’t trying to limit their independence, we are only trying to give them tools to keep safe. John was willing to risk his safety and life to live independently in Los Angeles. He wanted to have access to public transportation and freedom to live his life as he wanted.

Unfortunately, with his freedom came very dangerous situations. We tried to ensure his landlord understood John’s epilepsy, but that wasn’t enough when John was found by police wandering in his sleep barefoot and in pajamas around Los Angeles, or when he went into the wrong apartment. John carried his medical information in his wallet but refused to wear a bracelet or necklace indicating his epilepsy because didn’t want anyone to know about his condition. The police assumed it was drugs and did not recognize his epilepsy. Over time, the police began to recognize John and his case history and they were able to provide him care during his seizures.

I hope adults living with epilepsy will talk to their families and friends about their condition so they don’t have to go through the things John did alone without support. I hope they will consider wearing a medical alert bracelet or using a seizure alert device so others can be notified when a seizure occurs to be able to provide assistance. Maybe they will also consider getting a seizure response dog.

Learn more about seizure alert devices. 

Learn about seizure response dogs.

Honoring John’s Memory

Our story is one of frustration, helplessness, and the ultimate sadness, but I want to stress that John was an absolutely wonderful son. The frustration and pain was that we could not help him. I am sharing our story because I want for other parents to be empowered with all the information possible to protect their children.

Music was John’s life and it gave him peace. My goal is to make John’s music accessible on iTunes and YouTube. I want all proceeds to go to epilepsy and SUDEP research because we desperately need to get more funding to understand and prevent SUDEP. I hope you too will consider supporting this important research.

Sincerely,

Lizabeth Carmichael
Forever John’s Mom

Authored By: 
Lizabeth Carmichael
Authored Date: 
08/2015