What Can Caregivers of People with Epilepsy Do to Help?

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What Can Caregivers of People with Epilepsy Do to Help?

If you have a loved one with epilepsy for whom you provide care, you should know that the right information and treatment plan are as important for you as they are for your loved one. You both need to make healthy choices. Effective caregivers take care of themselves too.


Effective caregivers also recognize that what’s appropriate for someone with epilepsy at one age or stage of life may not be appropriate for another. Age is a determining factor in treatment, from medicinal dosage to how and when to administer. Further, experiences differ with age. Young children with epilepsy may struggle in class, while teenagers may encounter alcohol or drugs, and older people may face depression. The good news is, as EpilepsyAdvocate likes to say, there’s strength in numbers.


That’s certainly what caregiver Susan Axelrod discovered. Having a daughter with epilepsy, she took efforts to the next level as Founding Chair of Citizens United for Research in Epilepsy (CURE), an agency devoted to funding epilepsy research. “Epilepsy is so common,” she says, “that if you do speak out you’re very likely to find somebody who’s been affected in some way or another.”


The following guide addresses some of the questions caregivers of young adults and older people may have.


For Caregivers of Young Adults

According to the CDC a teenager who has epilepsy may experience more anxiety and confusion than his peers. This is a time that caregivers of young adults may need to pay close attention to signs of distress, and learn to differentiate them from growing pains. Learning to loosen the reins may be easier when you understand how some of the risks a typical adolescent faces apply to someone with epilepsy. It is important that you work together to develop ways for your teen to live well.


And remember, a teenager’s epilepsy can affect siblings and spouses as well. It is just as important to maintain family communication so that no one feels out of touch with the evolving situation. Be sure to stay connected and reach out to everyone involved regularly.


Is it okay for my teen to date?

When it comes to socializing and dating, teenagers with epilepsy may have more stress and hesitation than their peers. It’s reasonable to wait until a new relationship feels comfortable to discuss epilepsy, eliminating the fear of being rejected because of having the condition.

That said, it is good to discuss epilepsy with friends and dates. And if seizures are not well controlled, the conversation should not be too delayed. The more the people surrounding a teen with epilepsy know, the more they can help in case a seizure occurs.


Should my young adult drive?

For many people, driving is vital. Without it there may be no way to get to work or play. But obtaining a driver’s license when you have epilepsy comes with restrictions established to ensure public safety.


Every state has its own laws on epilepsy and driving. Most require a driver to be free of seizures, blackout, or any loss of consciousness for a certain period of time, generally six to 12 months, as confirmed by a medical professional or other evaluation. Medication, if taking it or not, can be a factor as well. Check with the Department of Motor Vehicles in your state to find out about your local laws. Some also require follow up evaluations.


Consider having an open conversation with your teen about why he or she wants to drive. If it’s simply to get around, there may be alternatives, such as rideshare services, carpools or public transportation. If your teen wants to drive to enjoy a sense of freedom, you can work together to identify other ways that he or she can express independence.


Can playing video games cause a seizure? What about bright, flashing lights?

It is possible. Flashing or bright lights can be seizure triggers. But there are factors not related to photosensitivity that could instigate a seizure while playing video games too, such as fatigue.


If your teen has epilepsy and is photosensitive, there are a number of potential environmental threats, such as attending concerts, going to dance clubs, and even light patterns coming in through Venetian blinds.


It’s best to talk to your neurologist or epileptologist to find out if your teen is photosensitive, and therefore at risk.


For Caregivers of Elderly People


Is it okay for older people with epilepsy to live alone?

Maintaining independence is important to many people as they age. A survey by the AARP determined 73 percent of people over age 45 have a strong preference for staying in their own home (“aging in place”) as long as possible. However, basic activities like cooking and shopping can become more challenging every day, even without epilepsy. The risk of falling and experiencing great injury from a fall increases over time. And just the fear of falling can be enough to immobilize a person.


Despite these risks, older people can and do live alone, even with epilepsy. Making sure a home is appropriate and safe is vital. According to the Epilepsy Foundation it’s the most common place for seizure-related accidents.


They suggest safety tips such as avoiding throw rugs (wall-to-wall carpeting may reduce injuries), avoiding clutter, and securing loose items (like laptops and televisions) to tables. Someone with frequent seizures may want to carry a portable phone or subscribe to a medical alert system so they can call for help from any part of the house.


For the discreet, coded but obvious messages like a flowerpot in a window, or a shade that is lowered and raised according to a schedule can let neighbors and others know all is well on a regular basis.


Are older people with epilepsy allowed to drive?

Every state has its own laws on epilepsy and driving, no matter what the age. Just like the laws for young people, most states require a driver to be free of seizures, blackout, or any loss of consciousness for a certain period of time, generally six to 12 months. Check with your Department of Motor Vehicles to find out about your local laws. Some require senior driving tests. Many recommend older people consult doctors, family members or friends to gauge current driving abilities.


Written exclusively for EpilepsyAdvocate.com

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