Community Forum Archive

Hi,Thank you for posting and we understand your concerns. It’s important that you’re continuing to discuss your concerns with your fiance, his healthcare team and your families, who can help guide you when making these decisions. If your fiancé has not already, he may want to consider getting more specialized care for his epilepsy at a comprehensive epilepsy center.  A comprehensive epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist, (epilepsy specialist), who can help explore all treatment options and determine what individual treatment plan maybe best for him. Epilepsy centers can also help connect you with additional support groups, educational sessions and connecting you with other families. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center Additionally, you all may want to consider keeping a journal or a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, setting reminders, recording your medical history, managing medication& other therapies, recognizing triggers, side effects, behaviors and other health events, which can be shared with his healthcare team. For additional information regarding seizure safety at night, please visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping Sometimes it's helpful to connect with other people who live with or care for those with epilepsy, to ask questions,share experiences, find & give support to each other. Contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates,to find support groups, events, and programs in your community. Or contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline  

That’s quite a dilemma that you’re facing, especially right before you’re expected to say “I do”. It’s one thing for you to say to your fiancé that you are concerned about how the two of you are going to be able to meet his medical needs from both a medical perspective (e.g. getting him the right team of doctors, medications) and financial perspective (e.g. insurance, out-of-pocket costs) once you are married considering that he will likely not be eligible for the state benefits anymore and that you would like to begin exploring ways to prepare with him now. Whereas it’s another thing to suggest that he do what your parents suggested because it could feel like a rejection of him because of the “burden” that he now carries (epilepsy). It’s definitely important that the two of you talk about this together. If you can add him in your insurance, that might be a possible solution even though there’s a cost. It may be the right investment for your future. Perhaps you need to double check with his case manager about the income requirements, sometimes we think it automatically disqualifies a person, but then it doesn’t because of the overall costs that he will have or some other factors. Remember also to consider the vows that you would be taking too and how that would conflict with your parents suggestion. 

I seem to know many who have did this even family and friends but you have to ask why do states and government have rules or if he or she stay at his or her house or in one or the others bedrooms insurances is affected and you must say is the others life worth losing not having that insurance and I lived in a group home threw the CMH and with family and other family members like grandma and grandpa did not share rooms you find out later for things like this and meeting in the front room for meals,right and still love each so so much but bills are paid and no worries and health risks.