Husband's Epilepsy and TBI Taking It's Toll

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My husband has a TBI and his seizures began when he was poisoned at age 18. He has an electronic device inside his body that electrocuted him every 60 seconds and is meant to help slow his seizures down. His seizures and brain damage sometimes make him irritable, irrational, angry, and he yells. **He is NOT abusive at all!* It's frustrating that I can't talk to people without them insisting that he is abusive. He's not. But sometimes, he acts like a spoiled brat. He becomes argumentative. This is usually his telltale sign that he is about to have a seizure. It is our son [we have two children and I am expecting a baby] and I, who catch the hell of the "spoiled brat" thing. I know he can't help it. We are waiting on one therapist that we contacted about "Anger Self-Management Therapy" to start accepting Medicare. I know my husband can't help it. I have researched it. But I have become depressed, feeling like I can't do anything right, I am to the point that I miss being happy. See, when he is having a seizure day, he's so mean. Not to embarrass him, but sometimes he is incontinent or loses control of his bowels when he has seizures, which is normal, but when I try to clean him up (he is 6'2" and I am 5'3" and I am pregnant, so that is not an easy task) after a seizure while he is out of it, he will wake up and start screaming at me to leave him alone. Or I will try to wake him from the deep sleep that comes with a seizure if it's time for his meds, and he will scream at me for that, too. I can't do anything right. I am to the point that I want to leave because i feel worthless. I know it's wrong because in between these times that he has seizures, he's wonderful. He's loving, thoughtful, attentive, sweet, funny, and fun to be around. He's on meds, in addition to the device, but he's supposed to take three pills a day, but he only takes two because he sleeps in [he has to have his eight hours, at least] and he doesn't understand the concept of adjusting times on his meds in lieu of that. He insists he is only supposed to take his pills at 7am, 12pm, and 10pm. He usually wakes up at 10:30 in the mornings. I have suggested that he take his meds at 10:30, 3:30, and 1:30am (he stays up late) but he won't hear it. There is a separate med that he takes at night. Other than missing the morning dose, he takes his meds religiously. I can't seem to try to reach out for help without a professional insisting that CPS get called. This is not that kind of situation, but I have become miserable because it's starting to feel completely thankless. I love my husband, but I am so unhappy. I don't want to leave. I have seizures, myself, but mine are nowhere near as frequent. I know the seizures are going to happen, but is there some way I can combat this misery? Does any other spouse have this issue?

Comments

Hi,Thank you for posting, it

Submitted by Anonymous on Tue, 2020-02-25 - 10:00

Hi,Thank you for posting, it sounds like you all are going through a lot. It’s important remember that you are not alone, we are here to help support you. It’s common for those who are in caregiver role to feel overwhelmed. It’s also important that you’re and making your health and overall well-being a priority and addressing you're feeling of depression with your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfIf you ever need to speak with someone please contact our Epilepsy and Seizures 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. Contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , to find support groups, events and programs in your community. If you all have not already, you may want to consider seeking more specialized care for his epilepsy at an 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 may be 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 There are many different types of counseling that can be very helpful, we are glad to hear that you all have reached out to a therapist to explore “Anger Self-Management Therapy”. In addition, you may want to ask his doctors to refer you to other members of the healthcare team, such as neuropsychologists, psychiatrists, or social workers, who specialize in helping people with epilepsy and their families to improve their lives. https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior .Your husband may also want to consider participating in treatment, seizure and lifestyle management programs, which can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-networkAdditionally, you may want to explore getting help around the home, so that you can take a break from the daily routine of caregiving. For assistance getting connected with home care, please contact your local Epilepsy Foundation, our 24/7 Helpline: https://www.epilepsy.com/living-epilepsy/247-helpline/national-community-resources, or ask his healthcare team for assistance getting connected with resources in your community.

Hi,Thank you for posting, it sounds like you all are going through a lot. It’s important remember that you are not alone, we are here to help support you. It’s common for those who are in caregiver role to feel overwhelmed. It’s also important that you’re and making your health and overall well-being a priority and addressing you're feeling of depression with your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfIf you ever need to speak with someone please contact our Epilepsy and Seizures 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. Contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , to find support groups, events and programs in your community. If you all have not already, you may want to consider seeking more specialized care for his epilepsy at an 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 may be 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 There are many different types of counseling that can be very helpful, we are glad to hear that you all have reached out to a therapist to explore “Anger Self-Management Therapy”. In addition, you may want to ask his doctors to refer you to other members of the healthcare team, such as neuropsychologists, psychiatrists, or social workers, who specialize in helping people with epilepsy and their families to improve their lives. https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior .Your husband may also want to consider participating in treatment, seizure and lifestyle management programs, which can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-networkAdditionally, you may want to explore getting help around the home, so that you can take a break from the daily routine of caregiving. For assistance getting connected with home care, please contact your local Epilepsy Foundation, our 24/7 Helpline: https://www.epilepsy.com/living-epilepsy/247-helpline/national-community-resources, or ask his healthcare team for assistance getting connected with resources in your community. 

Hi,Thank you for posting, it sounds like you all are going through a lot. It’s important remember that you are not alone, we are here to help support you. It’s common for those who are in caregiver role to feel overwhelmed. It’s also important that you’re and making your health and overall well-being a priority and addressing you're feeling of depression with your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfIf you ever need to speak with someone please contact our Epilepsy and Seizures 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. Contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , to find support groups, events and programs in your community. If you all have not already, you may want to consider seeking more specialized care for his epilepsy at an 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 may be 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 There are many different types of counseling that can be very helpful, we are glad to hear that you all have reached out to a therapist to explore “Anger Self-Management Therapy”. In addition, you may want to ask his doctors to refer you to other members of the healthcare team, such as neuropsychologists, psychiatrists, or social workers, who specialize in helping people with epilepsy and their families to improve their lives. https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior .Your husband may also want to consider participating in treatment, seizure and lifestyle management programs, which can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-networkAdditionally, you may want to explore getting help around the home, so that you can take a break from the daily routine of caregiving. For assistance getting connected with home care, please contact your local Epilepsy Foundation, our 24/7 Helpline: https://www.epilepsy.com/living-epilepsy/247-helpline/national-community-resources, or ask his healthcare team for assistance getting connected with resources in your community.

Hello, I’m a person with

Submitted by Patriotrehab on Tue, 2020-02-25 - 12:14

Hello, I’m a person with epilepsy with an acquired brain injury from medical negligence. I’m also a licensed clinical social worker and certified rehabilitation counselor. A large group of my clients are women in difficult marriages, so I definitely understand your situation from several angles. While I’m not suggesting that I work with you professionally, I do think you are on the right track about changing the schedule for your husband’s medication dosage, but that directive may need to come from his doctor and possibly the epilepsy specialist that Connect Help recommended if he’s not already seeing one. Because as one of my epilepsy specialists said to me, missing even one dose of medication can take up to 5 days to get the levels back into your blood. So, if he’s basically missing a morning dose every day, he’s not getting the level they think he is and needs for seizure control. This sounds like a major trigger for his anger and he definitely needs sleep because lack of sleep and over exertion can be a trigger for seizures too. If the medication schedule adjustment doesn’t reduce his seizures substantially than perhaps talking with the doctors about a change in medication or other treatment options is necessary. As for ways to support you, I’ll have to refrain from that here because that gets into what I do professionally and there are certain rules that limit that here. I do wish you the best in supporting your husband in his treatment and hope that makes life easier on you too.