How I Ended Up with PTSD as a Caregiver

By Rachel Lopez

My daughter’s diagnosis of epilepsy, specifically, juvenile myoclonic epilepsy, at the age of 15 sent me into complete panic mode. As we listened to the neurologist confirm that Elena had JME, I could not help but ruminate what this would do to her, our family, and me.

I will never forget the crash that woke me one morning… I thought she was dying…
We were forever changed.

Elena handled the news pretty well; she shed a few tears—ever strong for me—as she knew I would be a mess. I sobbed all the way home thinking, “I delivered a perfect baby girl…this can’t be…maybe they are wrong…how will she attain her dreams…how am I going to deal with this?” Too many thoughts to state.

JME is typically very well controlled. The seizures are basically a spasm that will make her arm, hand, and leg jerk involuntarily. The neurologist did not suggest or prepare me for a grand mal seizure, which in a lot of cases will happen as the disease progresses. According to the Epilepsy Foundation, “Juvenile myoclonic epilepsy (JME) is the most common of the generalized epilepsy syndromes to emerge in mid-to-late childhood. It is characterized by the presence of absence (formerly called petit mal) seizures, myoclonic seizures and generalized tonic-clonic (formerly called grand mal) seizures. Typically, the first seizure type to present are absence seizures—these start anywhere between the ages of 5 and 16 years of age. Myoclonic jerks are seen about 1 to 9 years later, with an average age of 14 or 15 years. Generalized tonic-clonic seizures appear a few months later after that, although they can appear earlier. Both males and females are affected equally” (Sirven and Fisher 2013).

Everything I read—and I researched EVERYTHING—indicated that this would happen eventually, but she was doing well on her medication. I will never forget the crash that woke me one morning. I knew without a doubt she had a grand mal; it was worse than I could have ever imagined—convulsing, eyes rolled back, shower curtain ripped down, makeup case shattered. I thought she was dying. As I stood in the driveway waiting for the ambulance, I cried in my 18-year-old son’s arms thinking I lost her. Trying to contain his tears, he punched a wall in the garage. We were forever changed.

Fast forward to three neurologists and a multitude of medications later. Elena was not the organized, punctual-to-a-fault kid that she used to be. The meds slowed her down, made her extremely tired, and most of her friends deserted her.

I threw myself into research, exploring the best doctors, natural remedies, and drugs. I also needed to learn how to take care of a child with a disability.

By now I had lost a lot of weight and hardly left the house. I researched all day. I stood over Elena as she got ready for bed or for school, I’d burst into the bathroom if I heard the slightest noise, I didn’t let her leave my sight. The only time I felt somewhat relaxed was when she was in school or sleeping for the night. I could then breathe easy. It is indescribable the feeling of helplessness that I experienced. By now I was on high alert for noises or crashing sounds. Once, while she was showering after school, I heard a shampoo bottle fall. I ran in, tore back the curtain to find her seizing, but was able to catch her before she fell. After this incident and several therapy sessions later, I was diagnosed with post-traumatic stress disorder (PTSD).

Imagine a life in which you live in a house where nobody can drop anything, make a sound, or even trip. Normal household commotion and everyday sounds prompted me to tear through the house with my heart racing, feeling like I was going to pass out, only to discover it was nothing. We didn’t have a normal household because this changed me. As Elena’s caregiver, I felt isolated, angry, and resentful of my husband who could just get up and go to work. If Elena couldn’t get up on time or if she had a bad morning, I was the one giving up my work to be with her. Because of her seizures, Elena couldn’t drive, so I became her taxi. I could not commit to a job outside of taking care of Elena. My life was taking care of her—her medication refills, her doctor appointments, her driver, and so much more.

Now I realize that my fear
suffocated all of us.

It’s been four years since Elena’s diagnosis and I am still dealing with PTSD and what this disease has done to me and our family. My son just expressed how sad he was that not only did the disease change our family, but also that he felt we all changed as individuals and that my state of mind made him feel neglected, in a way. It saddens me to hear this and makes me want to strive to overcome the effects of PTSD. I feel that support and talking to people who are going through similar situations is necessary to get through this. In my case, researching epilepsy pointed me in the direction of other moms who are also dealing with epilepsy. When researching any disease or condition, support groups (online or local) can be found through the websites of nonprofit organizations focused on helping those with a particular illness or issue.

The most important thing I learned
is that we as caregivers need to
take care of ourselves in order to be
of any help to the person we are caring for.

Over time, support and therapy have helped me deal with PTSD in a healthy manner. The most important thing I learned is that we as caregivers need to take care of ourselves in order to be of any help to the person we are caring for. According to the Office of Women’s Health, “caregiving may be putting too much stress on you if you have any of the following symptoms: feeling overwhelmed; sleeping too much or too little; gaining or losing a lot of weight; feeling tired most of the time; loss of interest in activities you used to enjoy; becoming easily irritated or angered; feeling constantly worried; often feeling sad; frequent headaches, bodily pain, or other physical problems; abuse of alcohol or drugs, including prescription drugs” (2012).

The following are some things that are currently helping me to stay calm and in control:

  • Yoga (one or two times a week)
  • Talking to other caregivers on support sites though the Epilepsy Foundation
  • Regular exercise (this is very important)
  • Meditation/breathing
  • Hobbies (reading, gardening, cooking).

I’m learning to give up control of Elena and just let her BE. It’s not easy and I still struggle, but it has to be one day at a time and changes do not happen overnight. Letting go has strengthened our relationship and has made me mindful that I have control over my thoughts and that’s the only control I have!

2017-11-28T10:52:47-08:00Friday, July 3, 2015|Caregiver & Family Support, Community Support Center|