Growing old is an inevitable part of life, but it can be especially daunting for those who care for individuals with a rare disease and/or intellectual disabilities. 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 TSC 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, the TSC Alliance has assembled resources to help you navigate this particularly challenging part of caring for someone with TSC. 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 reference the Aging Caregiver Checklist to help guide your thoughts.