Tips for Handling Difficulties With Epilepsy
Taking care of a person who has epilepsy can bring its hardships. There are many challenges that come with being a caregiver to a loved one with the condition. Try to remember the following when going through a difficult time:
- Your loved one may need emotional support. Epilepsy can have a psychological and emotional impact on your loved one that could include stress, depression and mood changes. If he or she is suffering from depression or has expressed suicidal thoughts, seek help immediately. Be a safe place for your loved one to confide his or her feelings. Encourage your loved one to focus on the positives, but also be patient and non-judgmental when he or she is expressing the negatives. It is frustrating to deal with the unpredictability of the condition for your loved one and yourself. Compassion, love and patience go a long way to help handle difficulties that arise.
- Focus on activities the person can still do. Your positive support helps to remind your loved one that there are still many activities he or she can enjoy, even if a little extra supervision is needed. Walking, tennis, basketball, golf and jogging are safe activities for people with epilepsy. Avoid water sports like scuba diving, which can be dangerous. Focusing on things that he or she can do instead of what they have lost is key.
- Make changes at home for safety. Make the home environment a safe place for seizures by clearing clutter. Consider covering sharp corners with padding or carpeting floors. Small steps and knowledge make all the difference in keeping your loved one safe, especially if they are suffering from uncontrolled seizures.
- Stay informed. Good communication between you and your loved one and the doctor and yourself is essential for navigating difficulties. Being able to talk to the doctor about problems that arise and ask questions keeps everyone involved informed. If you are with your loved one before a seizure, you may be able to help identify triggers, which you should communicate to their doctor and other individuals who spend time with your loved one.
- Know the triggers. Recognizing the specific events and circumstances is useful in monitoring and avoiding seizures. Some common triggers are forgetting to take medication, missing meals, lack of sleep, stress, illness or fever, flickering lights, hormonal change, street drugs and excessive consumption of alcohol.
Learn About Resources to Help Care for a Person Who Has Epilepsy
The following are some resources to help you learn how to provide additional services to a person who has epilepsy and more information about the neurological condition.
About Public Transportation and Paratransit Services
Because some people with epilepsy can’t operate a vehicle, there are other options for transportation. There are public transportation and paratransit services that assist those with epilepsy and other conditions. If your loved one’s epilepsy is severe, he or she may not be able to take public transportation as there is a risk of a seizure occurring while at a busy bus stop or intersection. Paratransit services are available for those who are unable to use the public transport system or who are unable to travel to a bus stop. Call the county transit authority in your area to apply. You may need a note from a doctor and/or have to supply other information in order to qualify.
Learn About Health Resources for Epilepsy
For more information about epilepsy for your loved one and yourself as a caregiver, there’s a wealth of resources. The Centers of Disease Control and Prevention (CDC) has information for families and friends, a toolkit for parents of teens with epilepsy, management tools and preparedness instructions. The agency also conducts epilepsy program activities and promotes public awareness of the condition. The National Institute of Neurological Disorders and Stroke (NINDS) and the Health Resources and Services Administration (HRSA) also have many resources available to you. The Epilepsy Foundation is a non-government agency with detailed information, programs, services, news, publications and online community chat rooms where you can talk to other caregivers, parents and people whose lives are affected by epilepsy. They also have a 24-hour, seven day a week, toll-free hotline available.
Find Out About Educational Websites on Epilepsy and Mental Health
Some other websites to check out are the American Epilepsy Society, National Association of Epilepsy Centers (NAEC) and WebEase (Web Epilepsy Awareness Support and Education), which is an online, self-management program for adults to follow their medication schedule, decrease stress and improve their sleep habits. The PEARLS program is a home-based depression treatment program for adults with epilepsy and depression. Similarly, UPLIFT for Epilepsy is a telephone and online program using mindfulness and cognitive behavioral therapy to treat depression.
Learn Caregiver Self-Care Strategies
Epilepsy in your loved one might change and the care you need to provide could increase or decrease as time progresses. There are many factors that might affect how you emotionally cope and handle epilepsy’s presence in your life. For instance, you may become physically less able yourself or have your own health needs, making caregiving more difficult for you. If you are a parent with other children, there is an added strain of managing everyone’s needs and your own personal responsibilities. You may be putting everyone else’s needs before your own, but that’s one of the fastest ways to experience caregiver burnout.
You have to look after yourself in order to care for anyone else. Caregiving is rewarding, but also demanding. Practice these self-care strategies to keep yourself healthy.
- Take a break when you need it. You need time to pause, relax and recharge. If you are feeling overwhelmed by tasks and to-do’s, take some time to breathe. Practicing mindfulness, relaxation techniques and gratefulness are powerful in improving your mental and emotional health.
- Join a support group. You may be feeling lonely, isolated or struggling with a mix of emotions. Connect with a caregiver support group. Speak with or spend time with someone you love, trust and confide in. Speaking with others about your feelings, especially those who might be in a similar situation, is helpful.
- Don’t forget to take care of your own physical health. While you may be busy overseeing your loved one’s medication and attending doctor’s appointments, it’s important to take time for your physical well-being. Don’t neglect your own needs. Attend your own regular health exams. Eat healthy food and enjoy physical activity.
- Find positive ways to bond with your loved one. There are many things you can do together with your loved one to bolster both your moods and bond with one another. Pick up a new hobby or invest some time in one you used to enjoy.