Feature Article: The experiences of family members of those who live with epilepsy and seizures by Christina Dykenga
The idea for our March newsletter feature article came up when speaking with one of our founding epilepsy support group members, Christina. As an adult living with epilepsy, she commented in one of the meetings about how she was concerned that epilepsy had impacted her family in many ways, some of which she was aware but others which might be unclear to her. She speculated that the affects had touched her mother, spouse, and children, one of whom has epilepsy too. We did a quick search of the existing scientific literature and it became clear that this topic seems to have been somewhat overlooked by researchers examining quality of life and other social issues in epilepsy. That is especially the case when it comes to the families of adult PWEs. As a result of that conversation, we decided to focus in on the effects of epilepsy on a family of an adult PWE by interviewing the different generations. And so was born the newest feature article for our upcoming issue. The group member, Christina Dykenga, took it upon herself to interview her family members about their experiences and perspectives for this article.
Christina:
For some time, I have been wondering about how my epilepsy affects my family because I know that every family member of mine has, on more than one occasion, found me seizing, many times, also injured, because of the seizure itself. As a social worker, I am concerned that my epilepsy may have traumatized my family and I even think they might present with signs of post-traumatic stress disorder (PTSD). I say that because every time there is a loud noise in the house, or the dogs bark, or countless other things, they tend to drop what they are doing and rush over to check whether I am having a seizure. This looks a bit like the startle response you might see in PTSD.
These thoughts I have result in my feeling guilty, because on some level, I feel as if I am possibly harming my family, unintentionally of course, but still... Luckily, I am addressing these thoughts and emotions with a psychotherapist, (which I highly recommend by the way for PWEs). My older daughter, who is 19, is also in therapy and I also recommend that for families of those living with epilepsy. I also think that a support group for family members of PWEs might be needed because right now, most of the available resources are for PWEs and not so much their families.
This is what Christina's husband had to say when asked "how has epilepsy affected you as a family member? Physically/ emotionally?"
Christina's Husband:
As a spouse of a person living with epilepsy, I can certainly say that epilepsy has affected every aspect of the marriage. We have been together since high school so I would never leave her; we need each other. But it breaks my heart to see my wonderful wife who had that amazing brain that got her through a master's program with Honors, "fizzle away." And, yes, I can get frustrated sometimes, but it is more out of sadness for her.
Epilepsy has permeated nearly all of our life. For example, it is hard to plan future events because we need to be prepared for a seizure and we never quite know how she will be feeling after a seizure occurs. The illness has also affected us from an economic standpoint; we have struggled severely financially, having to declare bankruptcy a few years back due to medical bills. Professionally, it has affected her as a person and it has also affected us as a family since she often cannot work and because she cannot drive, I am often recruited to be her driver taking her to and from her medical appointments. This can obscure the lines of my roles as spouse and caregiver and that brings with it, other complications. I have become the person who is responsible for organizing her medicines, scheduling all medical appointments, and am always watching her for medication side effects or signs of oncoming seizures. As you can imagine, this puts a damper on romance.
The scariest moment in our history was when she had brain surgery to treat her epilepsy and when she woke up, she couldn't move her left side. I had no idea if it would be forever and if so, what we would do.
She has come a long way. There have been so many injuries from drop seizures and recently even had to have a knee replacement (due to an injury from a seizure), which was excruciating to watch also. I can't believe how strong she is, and I am so proud of her every day.
Do I wish she could do more for herself? Yes, but she is my wife and I love her. I have my outlets- football, friends, breweries, etc. By the way, I think it's very important that any caregiver of a PWE makes sure to have outlets for stress in order to keep healthy.
Christina's Daughters:
COVID-19 and quarantine has affected us as a family as it has affected all families across the globe. Of course, my 16-year-old has been at home since March of 2020 which has been especially difficult for her at an age when one's social life is key. Sadly, she inherited my epilepsy and experiences absence seizures which can further complicate the life of a teen.
My 20-year old daughter answered my questions. Her answers can be seen below:
What is the scariest memory you have as a family member of a person with epilepsy?
The first time I saw my mom have a seizure, I was so young that I really didn't know what was happening. I was very afraid. My biggest fear is that my mom will die.
Now I sort of know what to do when she has a seizure: I know that I need to make sure she doesn't get hurt and I need to try to help her remember where she is.
Do you feel educated on epilepsy?
Yes, from experience.
What do you think would help you as a family member to feel more at ease or educated?
I'm not sure but there is really not much education or awareness out there.
Do you feel any anxiety/ depression/ embarrassment towards your family member?
I have a lot of anxiety all the time of it happening again. Just when I think it won't, it does again.
Christina's Mother:
Realizing that epilepsy appears to have a genetic component in our family has been troubling. Two of my children and one of my grandchildren have the condition. I hope that none of my other family members, especially my grandchildren will develop it.
My oldest daughter's journey has been a scary one; the worry during hospitalizations due to seizures or medication and seeing the effect on her wellbeing- physically and emotionally. I also see the impact on her family, including financially.
Do you feel educated on epilepsy?
I've learned a lot about the various forms of epilepsy.
Do you feel any anxiety/ depression/ embarrassment towards your family member?
Yes, there is anxiety or sadness at times, but NEVER embarrassment. I am so proud of your determination to go and fight through the negative emotions.
We really appreciate Christina and her family for agreeing to answer these questions and share their poignant experiences with all our readers. Christina and her family hope these words will resonate and will be helpful to those who read them.
