"Parenting" a 23YO daughter with grand mal seizures

Posted by adoptivemother @adoptivemother, Dec 5 2:00pm

My daughter had a typical, uneventful childhood and was perfectly healthy. She began having partial seizures at 19 while at college, during Covid, so it took about two years to figure out she wasn't just depressed. It turns out she has an encephalocele which is like a hernia of the brain but her doctors didn't want to address that and they began medication. We asked her not to drive and even offered to drive her around but she insisted she always gets an aura before her seizures and she pulls over! Well, she had a grand mal and was in a serious accident where her feet were crushed so she was in a wheel chair in a major city for several months. She continued to party and began taking the bus everywhere and then an evil middle aged man found her, took her home, assaulted her and knocked her teeth out-punching her face where the encephalocele is. We made her move home. Grand mals are a way of life now (she had three last week), she has auras daily, and she is very suicidal. We are pursuing treatment at Mayo but living with her is becoming extremely stressful personally and within my marriage.

How do I allow her to be an adult when she continually participates in risky behavior? She can't drive now and she is feeling like a prisoner yet her willingness (even wish) to die is making her not care about any rules or boundaries we set. If it wasn't for her medical condition, I would help her find a new home, but she can't live alone and what started all of this isn't her fault. I read someone else's post where they talked about a medical alert watch and that could absolutely change things for the better and I wondered if I put my specific story out there if there might be some other nugget of advice that I had no idea about.

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Chris Gautier OR Santosha | @santosha | 5 days ago

Good Morning @kb2014
I can understand your situation well as I face a similar one with my father who is 87 years old and quite stubborn, thinking he is invincible.
This second semester my father was diagnosed with pneumonia and it seems it has returned due to his negligence. Finally, he has agreed to go back to the doctor. I had the chance to have a private talk with the doctor. She said some things that I share here with you as they might help you to deal with the situation you are facing with your husband.
"Chris, I know how what has been happening with your father has impacted you emotionally, leaving you worried and distressed. Your father is a person who has always been in command of his life, it is not now that he will change his way of being. You have been doing all you can for him, but you can not be responsible for his life and attitude. You know this is affecting your epilepsy and you have to free yourself from this responsibility and take care of yourself and epilepsy."
She then gave me an example to explain what she was trying to share with me. "let's say your father has diabetes but is fully conscious. You see himself serving with a big slice of a cake full of sugar. As he is fully conscious, you can tell him that it is not advisable to eat that big slice and remind him of the consequences of this attitude, but you can not take the cake away from him. He is responsible for his life and not you. You could only do that if he is not mentally healthy, which is not the case."
The doctor also said: "I can not force your father to follow my recommendations but I can tell him about the consequences of his negligence with his health state." And this is what she did during the appointment, in a very kind but also firm way. I loved the metaphors she used with my father during the appointment!
I have also tried to convince my father to have the support of a psychologist to help him better cope with the advancement of my mother's Alzheimer's. It was lost energy. Remembering the words of the doctor, I have done what I can. I can not force my father to see a psychologist, even though I believe it would help him a lot.
Hope this sharing of experiences helps you in some way.
Wishing you all the best!
Chris (@santosha)

adoptivemother | @adoptivemother | 5 days ago

In reply to @santosha "Hi Heather again @adoptivemother There is an excellent book called Taking Control of Your Seizures: Workbook...." + (show)

@santosha

Hi Heather again @adoptivemother
There is an excellent book called Taking Control of Your Seizures: Workbook. You can easily find it at Amazon: https://www.amazon.com/Taking-Control-Your-Seizures-Treatments-ebook/dp/B01556P55I
I have been in contact with Dr. Andrews through online sessions. She has helped me a lot. She has epilepsy herself and understands very well her patients. On the internet, you can easily find some videos and articles about the Andrews-Reiter approach (scientifically proved). I have copied here one of the articles on this approach: https://epilepsyconference.com/aboutar.html
Dr. Andrews has recommended that I keep a daily journal to learn more about my seizure triggers and not only make notes when a seizure happens. A seizure might not take place right after a trigger, it can take some time and days. For example, I do not have a seizure right after a stressful day or a bad sleep, it might take some time before it happens. By keeping my journal daily, I have learned what my triggers are. As @jakedduck1 mentions, amnesia is so common after a seizure. Before starting a daily journal, I would only make notes after a seizure had happened, having a hard time remembering all the facts before the seizure and understanding the triggers of it. With this daily journal, after having recovered from my seizure, I would go back to my journal and read how my days before the seizure were, making it much easier to understand the trigger or triggers of this seizure. And later, I would discuss with Dr. Andrews how to avoid my triggers or to cope with them. I can say that today I manage my triggers better.
As to seizure dogs, I have copied here a link with more information on it: https://www.epilepsy.com/stories/dogs-household-pets-or-medical-equipment-for-those-living-with-epilepsy?utm_medium=email&utm_source=pardot&utm_campaign=epilepsynews_04032024
On YouTube, you can find good videos explaining more about seizure dogs.
Have a nice day!
Chris (@santosha)

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Oh my gosh this is extremely helpful and giving us lots to think about and research! Thank you!

kb2014 | @kb2014 | 3 days ago

In reply to @santosha "Good Morning @kb2014 I can understand your situation well as I face a similar one with..." + (show)

@santosha

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Thank you. Your post is exactly correct. I keep working on my issue with this.

Chris Gautier OR Santosha | @santosha | 17 hours ago

Good Morning Morning Heather - @adoptivemother
I have found some nice words in a spiritual book this week, remembering you and your daughter. I copy it here for you.
"Self-acceptance is accepting who we are and how we are. Let us not confuse it with a resigned surrender, in which nothing else matters. In fact, it turns out that, by accepting ourselves, the end of our rivalry with ourselves begins."
"Acceptance is not about adapting to a conformist and sad way of how everything is happening, nor about enduring and allowing any type of disrespect or abuse towards ourselves; rather, it is about having the necessary ability to admit realities, evaluate events, and promote changes."
Wishing you and all members of our group a beautiful Sunday!
Chris (@santosha)