Caring for Families and Caregivers of People With Epilepsy

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There are strategies that can help prevent depression, anxiety and PTSD.

IF YOU CARE FOR A LOVED one with epilepsy, you know first-hand how difficult this can be. Let’s take a moment to examine some of the most stressful aspects and how to reduce their impact.

The stress begins with witnessing the first seizure, especially if it’s a generalized tonic clonic seizure or grand mal type. This experience is frightening and anxiety-provoking, and it always leaves a mark. It can even cause post-traumatic stress disorder, or PTSD, resulting in worry, nervousness and fear. For example, some parents find it difficult to allow their child out of their sight after witnessing a seizure, especially at night. Even if the seizures are brought under good control with medication, which is the case for most people with epilepsy, the possibility of a recurrence is an ever-present concern.

Families of those with frequent seizures bear an even greater burden. Uncontrolled epilepsy brings constant worry about a loved one having another seizure when the caregiver isn’t present, perhaps resulting in injury or harm. Living in this state of high stress can cause anxiety and depression in the caregiver as well as the patient. The unpredictability of seizure recurrence is one of the most stressful aspects of the condition, and it can take a severe toll over time.

Families of those with ongoing seizures may also be distressed because of how seizures limit their loved one’s independence, driving, schooling or employment, social engagement and relationships. Family members themselves may be required to make changes in their own personal and work settings to be available to care for the loved one. The accumulated stress can cause emotional strain for everyone involved.

While the challenges of caring for a loved one with epilepsy cannot be completely eliminated, the following strategies can help you take care of yourself emotionally and physically while you manage the stress:

  1. Accept that it’s a normal reaction to feel stressed or anxious in response to witnessing a loved one’s epileptic seizures or how seizures impact their life.
  2. Ask your medical team for a referral to a mental health professional if you’re feeling depressed or anxious, or if you suspect you may be experiencing PTSD.
  3. Find ways, when possible, to take a break from the caregiving role and engage in activities that you find relaxing and restorative.
  4. Be organized and have a plan for what to do if a loved one has a seizure, so that you feel less anxious when the time comes.
  5. Involve family, friends, and your community in the care of your loved one, and communicate your needs so that your support system can help you.
  6. Join an epilepsy support group that can provide resources and put you in touch with other families who are traveling the same path.
  7. Be proactive and ask your medical team about access to case managers, social workers, professional home care or respite services.

By taking care of yourself and keeping yourself well, you will be in a better position to support your loved one. Although it’s hard to accept, we all have limited emotional and mental energy. Don’t be afraid to ask for help, and reach out for the support you need.

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