Being a caregiver can be equally rewarding and overwhelming at the same time – it is completely normal to feel this way. Many caregivers start this journey as parents, yet others might be family relatives (grandparents, siblings, etc.) or close family friends who are all essential parts of the “village” that cares for someone with a disability. Western society often considers the village as solely for the loved one who needs assistance; however, the reality is that the village is the support system for the primary caregiver in addition to the person with a disability.
Regardless of where you are on this journey it is important to take a moment and realize the first step in acknowledging caregiver mental health is accepting that grief started at diagnosis. It is completely valid and okay to have mixed emotions and process the reality that everyone is “normal” is no longer the same. Many caregivers throw themselves into understanding the disease, researching treatment options, experts, and resources for their loved one, yet most do not take the same advice on finding those same resources, tricks, and tools to help them become the best caregiver they can become. This new normal might not be what you expected but you can still have a sense of control even under the most difficult circumstances.
See below for additional resources for aging caregivers.
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 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.
