Caring for an Adult With Epilepsy
Reviewed by: HU Medical Review Board | Last reviewed: November 2021
Caring for an adult with epilepsy can be very different from caring for a child or teenager with the condition.Your adult loved one may have once been completely independent and be reluctant to accept help. Or, brain damage from repeated seizures may leave your person unaware they need as much as they do.
Overlapping roles are another challenge for caregivers. Your original relationship may have been one of parent, spouse, friend, sibling, or offspring. The change in relationship can be mentally and emotionally demanding, on top of the physical demands of caregiving.
Because epilepsy is a brain disease, it affects everyone differently. What is common to people with epilepsy and their caregivers is the tremendous disadvantages it may cause to health, social life, and finances. The good news is that studies show strong support results in better outcomes for adults with epilepsy.1,2
Caring for your adult child with epilepsy
One of the biggest challenges to caring for an adult child with epilepsy is that they may not want your help. Some may not realize they need support. Others may be in denial about their diagnosis or the need to take medicine consistently.
If your child is age 18 or older, the privacy of their health records is protected by HIPAA. HIPAA (pronounced hip’ a) is a federal law that stands for the Health Insurance Portability and Accountability Act. This means you may only attend doctor’s visits, get test results, or communicate directly with their doctor if your adult child fills out paperwork to say that is okay.
Not knowing can be frustrating and worrisome for parents. You have to respect your adult child’s independence but still have concerns for their safety. This is where a support group can help.
The Epilepsy Foundation offers a variety of support services through local chapters across the United States. Find local chapters at https://www.epilepsy.com/affiliates. You may also be able to find other parents supporting adult children with epilepsy in local MeetUp groups.
Learning more about epilepsy and seizures can also help you better understand your adult child’s life and how you can help.
Moving back home
Some adult children with epilepsy may need to move back home. This arrangement may be temporary or permanent. Whether the move back home is sudden or planned, it is important to discuss the new setup openly. Studies show 4 things should be discussed:2,3
- Expectations. Will the child pay rent? Are they expected to be at home at certain times? Can they drive your car?
- Chores. Talk about who is responsible for cooking, cleaning, and errands. Try to find chores the adult child can still do.
- Timing. If the move can be planned, talk about when they will move in and how long they plan to stay.
- Adult behavior. It may be easy for an adult child and their parents to slip back into old habits formed during their childhood. Both sides treating and respecting each other as adults can help prevent this.
The answers to all of these questions may be hard to pin down, or they may have no answers. However, talking through everyone's ideas of what your life together will be like can help reduce tension.
Caring for your spouse with epilepsy
Studies show that the spouses and partners of adults with epilepsy face some serious challenges. Depression, marital problems, and unemployment due to caring for their loved one are common.1
Despite these stresses, there is good news. The same studies that talk about the challenges also report an increased sense of closeness in the family. And, married adults with epilepsy show a better quality of life compared to unmarried ones. The social support a marriage brings results in better life satisfaction and a positive approach to treating epilepsy.1
The U.S. Epilepsy Foundation offers a variety of support services through local chapters. You can learn more about local chapters at https://www.epilepsy.com/affiliates. You may also be able to find other partners supporting adults with epilepsy in local MeetUp groups.
Remember, caregiving is hard work. It can be hard to ask for help, especially if you feel like you should be able to handle it yourself. Asking for help or admitting you cannot do it alone is nothing to be ashamed of. Start by talking with your loved one’s epilepsy team. They will likely be able to tell you about local resources geared toward caregivers and epilepsy support groups.