Tales from the Carer’s Coalface

First, a picture of the beagles. These dogs are lifesavers. My partner and I call them ‘nurse beagles’ because they alert to her grand mal seizures.

I am a carer for my partner. She suffers from severe epilepsy (among other things.) Most of the time, it manifests as petit mal seizures. She has these daily, several times a day. When she has them, my partner basically stops – most of the time, she drops whatever she is holding, and she pauses as if lost in stasis.

For example, if she was speaking, she would pause mid-sentence and continue immediately upon coming out of the seizure. They can last anywhere from thirty seconds to thirty minutes. Re-arranging life and living around this is relatively easy. As they are more common when she is tired, we tend to do daily tasks early in our ‘day.’ The longer absence seizures happen when she is relaxing or sitting down and reading, which makes it impossible for me to detect them until after the fact most of the time.

I want my partner to have independence. If I was constantly checking on her, it would be too intrusive, but I admit it is a balancing act.

Then there are the bad days. Today has been one of the worst we have had in years. At 0500 I was woken up by the beagles. Veida had woken to do something and had a grand mal seizure. I quickly got a pillow under her head. (I did not put anything in her mouth. If you find yourself helping someone who is seizing, do not put anything in their mouth. Ever. Best case, you get injured. Worst case, you will break their teeth. Move furniture away from them. Do not try to restrain them. You will get hurt if you try to restrain a seizing person.)

So, I checked her head for bumps and, finding none, bundled her back into bed. Due to the amnesia from the seizure, she does not know why she woke up

Then I dozed off. I was woken up again at 0830 by a dropped saucepan. I rushed out with a pillow in hand. I know grand mal seizures can cluster, and feared that this was happening. I was, unfortunately, correct. I quickly got the pillow under her head and moved a bench on wheels out of the way.

I then started to plan a trip to Accident & Emergency. As a carer, you have to be aware of patterns. Veida usually has 3-4 grand mal seizures in a year, commonly occurring over a month or a little more. 2 seizures in less than six hours is way off pattern. I needed to get advice.

As it turns out, there is nothing wrong with her according to all the tests. Hopefully, it stays that way.

But this is where I may vent a little. I have found it hard, even among other carers, to find people who understand the eggshells I will be walking on. The nerves I will have for the next two or three weeks will make much of my life harder. Because grand mal seizures strike from nowhere in our experience, I will spend that time being hypervigilant and alert to any aberrant sound.

People who have not experienced it have trouble understanding the strain this can cause a person. Maybe that is why I felt the need to post about it. There is a lack of support for carers out there. Always has been, and it feels like it is getting worse.



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