Growing old is an inevitable part of life, but it can be especially daunting for those who care for individuals with a rare epilepsy.
Life as a caregiver (e.g., cooking, managing medicines, medical appointments, therapy, etc.) can lead to decreased attention to your own personal needs, physical wellness and mental health. According to studies on aging caregivers, these significant barriers increase your risk for health problems, decrease quality of life and may cause early death.
Caregivers older than 65 have a 63% higher risk of serious health issues due to prolonged emotional and physical stress.
As caregivers age, they may feel haunted by difficult questions (“I’m not going to live forever so who is going to care for my loved one when I am gone?” or, more simply, “Will my loved one be okay?”). These questions are absolutely normal, particularly when confronting mortality. Contemplating this reality as a caregiver is difficult and can awaken some all-too-familiar feelings of fear, worry, loneliness, and isolation.
Your love and dedication as a caregiver to an affected individual with a rare epilepsy is an inspiration and has helped improve quality of care and life for all who are affected by the disease. To help you in your journey as a caregiver, these assembled resources can help you navigate this particularly challenging part of caring for someone with a rare epilepsy. The goal is to help you cope and focus on a practical, actionable care plan for your loved one, while also being vigilant regarding your own personal health and how to identify and mitigate stress brought on by your dedication to care.
Please refer to the Respite & Self-Care section of this guide for reminders and supportive information about your own self-care as you care for your loved one with rare epilepsy.
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This Guide can help you get organized, but should not be considered as a substitution for legal, financial, or medical advice.
VIPrareCARE.com and the C.A.R.E. Binder were proudly developed in collaboration with the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome (LGS) Foundation, TSC Alliance and other organizations who support families like yours and was made possible through UCB funding and partnership.
Updated 06/23/25 (AM)