Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Caregiver/Sister Struggling with Intense Anxiety
Mon, 05/13/2019 - 16:32Topic: Parents & Caregivers
My younger brother, James, (27) had his first grand mal seizure at the age of 18. At the time, I lived at home with him and my mother, I am now age 31. Fear surrounded seizures from the first moment he had one. I awoke to my mom screaming, "Megan! I can't wake up your brother!"
From that moment on, the idea of being alone with has him terrified me. Yes, there is anxiety when he is having a seizure, or is postictal, (even if there is another family member or friend around) but the fear comes from anticipating being alone with him.
He has complex partial seizures, and he tends to run wild and collapse all over the place. He tries to get outside, and he'll collapse on the concrete if he makes it. He is 6'1 and approximately 200 lbs. I am not strong. Controlling him is nearly impossible.
James now has a 5 year old son that he cares for during the day while his fiance goes to work. I would go over there and work (remotely) every day, to keep an eye on them both in case something happened, which it did, occasionally. Recently the fiance moved out, and now James has the son over night and throughout the day. On the nights where James has his son, I sleep at their house, because my mom leaves for work at 6am, and we don't like the idea of James watching my nephew alone.
I cannot breathe for the anxiety. I can't eat. I struggle to sleep. I need some sort of advise on how to cope with being responsible for a seizing giant and a nephew, who I'm terrified will get in the way.
I know how to handle a seizure. I know the protocols and how to keep them safe. What I don't know is how to handle the fear I feel and the guilt I have for being afraid of my brother.
Hi MegLane, Thank you for
Submitted by Anonymous on Tue, 2019-05-14 - 09:29
Hi MegLane, Thank you for posting and sharing your experience. It is so important for you as caretaker to make sure you’re taking care of yourself as well. The Wellness Institute https://www.epilepsy.com/living-epilepsy/our-programs/wellness-institute , provides tools and strategies to better assist your loved one and support you in your important role. https://www.epilepsy.com/living-epilepsy/toolboxIt is common for those living with epilepsy, or who care for individuals with epilepsy to experience feelings of anxiety and depression, https://www.epilepsy.com/living-epilepsy/healthy-living and it’s important that know that you aren't alone https://www.epilepsy.com/learn/special-populations/seniors-and-epilepsy/caregivers. Please visit, https://www.epilepsy.com/living-epilepsy/healthy-living/stress-and-wellness/mindfulness-epilepsy &https://www.epilepsy.com/living-epilepsy/healthy-living/stress-and-wellness/managing-stress , for more information on stress management. Sometimes it's helpful to connect with other people who live with epilepsy, or care for someone with epilepsy, to ask questions, share experiences, and find and give support to each other. Find your local Epilepsy Foundation at epilepsy.com/local support, then contact them to find support groups, events, and programs in your community.www.epilepsy.com/affiliates You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org & epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support.Additionally you all may want to consider with your brother’s doctor having a device that can help track his seizures, by visiting https://www.dannydid.org/ , so he can share this information with his health care team. Keeping seizure diary https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary , as another good self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with his care providers.