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Seizure Diaries: Spouse’s Story

Tales of frustration, worry, exhaustion, and hope…

As the wife of a man who suffers from epilepsy, it is hard to be hopeful. My husband, Charlie, has had seizures for over 30 years. For the last 11 of those years I have been his wife and caregiver. I have watched as debilitating seizures have increased and decreased in intensity.

There is no cure, only different medications. At this point I could go for some relief for Charlie. How about a few seizure-free days? That would be a great outcome.

When I reflect on how I really feel about epilepsy, the words that come to mind are frustration, worry, exhaustion and hope. Frustration that the medical community has made no progress in Charlie’s case. And worry because of the constant threat of physical harm for my husband. I am tired and have moments without hope.

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One day last September, I was at work and got a call from Charlie. He sounded weak and dizzy. He told me he had had a really bad seizure and woke up in a pool of blood. He had fallen in the kitchen and had cut his face and head on a vase that broke during his fall. Plus his ear was nearly cut in half. I rushed home and saw the mess in the kitchen. I drove him to the hospital, while he used towels to press on his wounds.

In the car Charlie told me he had fallen during a seizure and hit his head on the counter. He then crashed to the floor and the convulsions had thrown him against the vase shards. At the hospital Charlie received over 60 stitches on his face, head and ear. The emergency room doctor had to sew him back together. The worst gash in the back of his head took 30 stitches to repair.

We got back home after midnight and we arranged sheets and blankets for Charlie to sleep on the couch. I cleaned up the kitchen and kept an eye on him. I could not believe how much blood had spilled. It took me four hours to clean up the mess and I realized that Charlie had almost bled to death. I could have lost him.

My mind raced with all kinds of self-doubt. How can I keep working after an episode like this? Shouldn’t I be at home, where I can take care of my husband? I rested in a chair nearby and prayed for Charlie. After little sleep and lots of tears I realized that I had to soldier on…

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In a word, I am exhausted. Is it OK to admit that? I feel guilty saying it. I am not the one who is experiencing the seizures, but I am bone tired. I am the one holding down the “breadwinner” role and working full-time. Taking care of my family is a constant source of stress. Many caregivers carry that same burden on their shoulders. We worry about our income, health care, insurance, doctor’s bills, and everything finances. It is a constant ache. We try to assure our spouses that everything is OK, but we know it’s not. We all go through the paces, applying for financial help with medical bills, only to be turned down again. Their reply? We work, and as employees we are expected to put all of our money toward those damn bills. We pay all of our critical bills first, and try our best to keep food on the table. We have a small home and car that needs repairs, so other bills are part of everyday living. With a mounting pile of hospital and prescriptions bills on the side of my desk, the pressure is intense. The nagging bill collectors are always calling and the dunning payment letters never stop.

As a caregiver, frustration wears me down the most. I feel frustrated as I watch my husband go through one seizure after another. We have been to see so many doctors, we have had overnight stays in so many hospitals, we have heard the results of so many tests, I can’t remember them all. Charlie has ingested nearly all the seizure medicines on the market. I feel frustrated when I think of the number of hours Charlie has spent with those four neurologists who gave up on him. He just started with his fifth neurologist, a woman at Milton Hershey Neurological Center in Pennsylvania. She has hope.

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Hope is a rare commodity for epilepsy sufferers, because the adjective most often used in the same sentence with hope is false. Our doctor’s hope lies in technology. There is a new device that has been successful on a small sample of seizure patients: an implant called a neuro pace. After brain surgery this new device sits directly on the patient’s brain to help control seizures that are stubbornly immune to typical seizure drugs. One of the complicating factors is that Charlie has seizures that generate from several parts of his brain, so he is a high risk candidate. However, our new neurologist has put together a team of surgeons, neuro pace experts, and seizure specialists. The team is in research mode and they are hopeful for this or another technology improvement.

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Vagus Nerve Stimulator

Charlie has a vagus nerve stimulator implant (VNS) in his chest. He activates the VNS by placing a wrist magnet over the device. The VNS helps Charlie quiet his little episodes (petit-mal seizure). The magnet triggers a strong electrical current to the vagus nerve in his neck, which pulls him out of seizures. If he has a big one (grand-mal seizure), there is no remedy. The VNS does not help. During the grand-mals the caregivers apply emergency first aid: they lay the victim on his/her side, clear their breathing pathway, and move them away from furniture or sharp objects. Charlie still averages between 30 to 50 seizures a month, and many of them are grand-mals.

Despite it all, I feel we have some blessings in our lives. We have healthy children and grandchildren. We have a roof over our heads. We have our faith. Still I wish somehow I could do more. If I were to take another job, part-time, then Charlie would be alone all the time. We recently applied for help. We wanted to hire someone to stay with Charlie while I am at work, but we were turned down. I felt like screaming, “Don’t you understand?” But instead I worry in private and put on a good front. I try to keep all these emotions hidden inside. It is easier that way.

Don’t ask me how I am doing. I want to say I’m OK, but I am not OK. I feel my primary job is as caregiver to my husband. My personal care is secondary. When I get home every day, I am too exhausted to deal with my own health issues.

My collapse a few weeks ago from a gallstone reminded me that I am not taking care of my own health. With the additional medical bills piling up, I get so depressed. When will this all end? What am I doing? I feel hopeless and useless. Charlie has become the sole purpose in my life, and somewhere along the way I have lost myself.

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Holding things together is a challenge. Every day, when I walk out the door to go to work, I pray to God to keep Charlie safe while I am gone. We keep in constant contact via phone and texts. I have my phone with me at all times, so he can get ahold of me if he needs to. He also carries a life alert button, which is a wonderful gift from one of his brothers. For Christmas this year Charlie’s brothers and sisters went together and bought him a special Apple watch. Apple, in conjunction with Johns Hopkins Hospital, created an app which monitors seizures and alerts the caregiver by text that the wearer is having a seizure. In my case I usually text Charlie back to make sure he is OK. If he doesn’t answer me within a few minutes, I call him. I am so afraid of him getting severely hurt again, and that fear is always in the back of my mind.

Charlie flew to Florida the other day to see his ailing father. Charlie was on some new medications and had had a good stretch of days with few seizures. He decided to go for it and accompanied his sister and nephew for the trip. It was a relief for me to have him out of the house with family, but I missed him.

These days we rarely get to do anything special. We don’t make fun plans to go on vacations any more or to spend a night going out to dinner. Our days and nights are planned around Charlie’s seizures. Every once in a great while, we get to go to the park or to the lake. We treasure those times.

Caregivers surrender themselves completely to the person they are caring for. Our lives revolve around our loved ones. It is a treacherous path and many don’t handle it well. When the seizures seem endless, I redouble my efforts and know that I am committed. People often ask me how I can handle my stress: my full-time job, my husband’s epilepsy, my sons and grandson, my own health. Somehow, at the end of some particularly challenging days I wonder myself. But from somewhere comes the strength to keep going. I am beginning to believe it is a gift from God. With His grace I find the ability to put a smile on my face. My smile is for my husband. How could I hide a smile on my face, when it means the world to him. What an easy thing for me to do! And what an simple gift it is.

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Charlie is my brave warrior! He fights his seizure episodes and never gives up. He takes his medicine religiously. He uses his VNS to calm his petit-mals. He takes on the sharpest grand-mals and still is so pleased to see me, when he comes to. He finds hope in the words of his new neurologist, despite the odds. We both soldier on looking for the next possible breakthrough.