The Aging Caregiver

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 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, who is going to care for my loved one when I am gone?” or, more simply, “Will they be okay?”). These questions are absolutely normal, particularly when confronting mortality. Contemplating this difficult transition as a caregiver is difficult and can awaken some all-too-familiar feelings of fear, worry, loneliness, and isolation.

Your love and dedication to an affected individual (loved one) and the TSC community is an inspiration and has helped improve quality of care and life for all who are affected by TSC. 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 TSC loved one, while also being vigilant regarding your personal health and how to identify and mitigate stress brought on by your dedication to care. There are many resources in the section that you should explore – here is a helpful aging caregiver checklist to help guide you. In addition, please explore the Life Stages Guides and the estate & financial planning, and caregiver mental health section in the TSC Navigator.