Caregiver: Darlena
Relationship to Loved One: Wife

Loved One with Epilepsy: Keith
Relationship to Caregiver: Husband

What is the official diagnosis of your loved one?
He has epilepsy due to having had meningitis (brain abscess) and two neurosurgeries. This was in 1965, so it’s a miracle he lived.

What is your definition of epilepsy?
Life-altering (for patient and spouse), chronic, misunderstood, isolating, disease, which is hidden most of the time.

When was your loved one diagnosed with epilepsy?

How did it change your life?
When we first met, he thought his seizures were completely controlled with medication. Reflecting on it 23 years later, I now know what the seizures look like. I know he had a couple when we were dating, and he didn’t even realize he was having them. We went from being newly married to me being a caregiver in less than one year. Our lives have dramatically changed throughout the years at no fault of my husband’s. He can’t help the fact that he has epilepsy. He can’t help it that they aren’t completely controlled. He can’t help it that he doesn’t drive. There are times when I get very angry about the situation we are in. It’s sometimes very hard to communicate because my husband is on anti-seizure meds – all of which have side effects – that affect the brain. If there was one thing in the whole world I could change, I would take my husband’s epilepsy away from him. Then, I have to remember that God knows exactly what he is doing. He has put us together for a reason. If the situation were reversed, my husband would care for and support me. I could write a dissertation about everything that has happened in our lives because of epilepsy.

What was your initial response of his/her first seizure?
I was frightened myself and frightened for him. It’s a very helpless feeling to not be able to make the seizures stop. Now I’m informed and know what to do.

What have been some of the BIGGEST challenges you face as a parent/husband/wife/etc.?
Realizing that our life together isn’t what I thought it would be. Dealing with my husband after a long day at work – especially if he’s tired, is exhausting. He can’t help it. I’m being truthful. He relies on me so much and has isolated himself; therefore, I’m also isolated. I don’t have an outlet because even friends and family don’t understand.

What are some of the DAILY challenges you face?

What are some false thoughts about people with epilepsy?
They are dumb. They are epileptics – not people with epilepsy. They always fall to the floor and seize.

What is your biggest fear for your loved one?
He will deteriorate into something akin to Alzheimer’s disease where he won’t be able to communicate, and I won’t be able to care for him.

Has your loved one had any seizure-related surgery? If so, what was it? Did it help? How did/does this affect you?
Before I met him. Years ago.

Has medication ever controlled the seizure(s) of your loved one – i.e. sometimes medication stops them; sometimes it doesn’t work at all; sometimes it creates a different kind of seizure.
As he has gotten older, the medications that helped previously don’t help as well. He has been through many, many medication changes. So far, nothing has completely controlled his seizures.

Have you seen/heard/personally witnessed any new form(s) of seizure meds? If so, what are they? Do you consent if your loved one is willing to try one or more of these meds?
We always go into any medication changes well informed. We gather as much information as possible, including discussions with the epileptologist/neurologist. The final decision is my husband’s, because it is his life not mine.

What are some of the positive changes that have affected your life due to epilepsy, if any?
More compassionate person.

Do you have any encouraging words/hope for people recently diagnosed with epilepsy and/or their loved ones?
For both – see more than one epileptologist/neurologist. Be in the room with the doctor, because he/she will need to know what is observed when seizures occur. The patient – be sure to take your medications and see the doctor as advised. Epilepsy isn’t a death sentence; your life will change and you will need to find a new normal. Wear a medical alert necklace or bracelet. Know that you are loved by God and your family/friends. The caregiver – you’ll need to be your spouse’s advocate. There will be times when he/she isn’t able to do that. Always speak up if you don’t understand or agree with what is going on. Be gentle with yourself. Seek out a support system. Always remember that your spouse can’t help it. Epilepsy isn’t anything that a person would want to have. These things happen sometimes. Write down your spouse’s medications and when they are taken; carry this with you at all times. Know what to do in case of a seizure, such as a grand mal.

What’s one word you want the general public to think of when they hear the word “epilepsy?”

Is there anything else you want the general public to know about epilepsy?
Don’t run away when someone asks for help when a patient is having a seizure. Not all seizures are grand mal. It’s nothing to be afraid of. It’s a disease like many others. Patients and their families are often very isolated.

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