I’ve blogged about my own experience with epilepsy in the past. I’ve also made brief mention to the fact that my father had seizures for about 8 years while I was about 10-18 years old. My seizures started at age 23, so our experiences didn’t overlap.
However, a few weeks ago he had another seizure, after being seizure free for about 10 years and off of medication for about 8 years. At least, he is confident that he had a seizure based on waking up sore and confused. It took him multiple days to get back to feeling like himself cognitively. He lives with my brother and sister-in-law. She said she heard a yell or cry that night and thought it was a 2-year-old who is living with them. She went in to check on the baby though and he was asleep so she assumed she hadn’t heard anything after all. It never occurred to her that it could have been my dad.
He didn’t confess to thinking he had a seizure for 2 days. By then it was too late to get a blood draw, so, unfortunately, we don’t know if his CPK was elevated. He made a doctors appointment and was told he should have went in to have a blood draw because if his CPK had been really elevated it could be used as proof that he did in fact have a seizure and they could have started him back on medication. However, without any proof they don’t want to give him meds.
We got him a referral for a neurologist which we go to next week. Thankfully, he’s been doing well since then and does not think he has had any additional seizures. However, he is in a difficult spot because he is confident he had a seizure but there is no proof. He legally can drive, but doesn’t feel safe doing so. He is used to being rather independent for his age (72) so he’s had a hard time being at home all day. I can also just tell that he is nervous to go to bed and such.
I remember feeling afraid of my own body after I had my seizures, even though I was on medication. I had no idea if the meds would work at first. My heart would race when I lay down in bed each night, and it took me 40+ minutes to fall asleep due to anxiety. Yet, if my boyfriend heard me tossing and turning and came in to check on me, I felt irritated. We lived right next to a store at that time, and I remember also being frustrated when I realized he had gotten nervous because it took me a bit longer to get back from the store than he had expected. It’s hard to be an adult and to feel like people are watching over you. At the same time, you are anxious about your wellbeing yourself! It can be really hard to balance those feelings.
If you have a loved one who has recently had a seizure, my advice is to look after them within reason. If you live with them, keep your ears open for any sounds that could be a seizure. If they are showering and you hear a thud, ask if they are okay. If you don’t live with them, call to check in now and then and offer to drive them to get groceries, go to the bank or whatever else they may need. It may bother them that you are more involved or present than you used to be. They may feel like you are treating them a bit less like an adult. If you suspect this, address it! With my dad I say “I know you’re tired of being asked how you’re doing but I do worry about you. So…how are you doing?”
It seems to me that if I express the fact that I know I am bothering him a little bit, but explain that I am concerned or that I care, it really softens his reaction. It helps him to see my perspective and that I am coming from a place of love and support.
I’d love to hear your advice for balancing the conflict between wanting independence vs needing to stay safe with epilepsy in the comments if you have tips!