Caregivers and individuals with tuberous sclerosis complex (TSC) often meet challenges, and mental health plays a crucial role in navigating these complexities. This section explores valuable insights and resources for caregivers and individuals alike.

Advance decision making

Advance decision making is a process in which you can proactively plan out your or your loved one’s wishes on end-of-life treatments and interventions, sometimes called an “advance directive.” Ideally, this should be planned or discussed before it becomes medically urgent. Advance directives provide a roadmap of how to carry out difficult tasks during a difficult situation. These directives can provide peace and comfort to those who have to act in the best interest of their loved ones. An advance directive is a legal document that should be part of your estate planning. The difference between legal documents and living wishes can both be honored in a time of need.

Having an advance directive in place is especially important when caring for someone with special needs. Thinking ahead proactively about these difficult choices can help avoid stress when emotions and doubt threaten to drive decision making. It’s normal to experience many emotions including fear, doubt and guilt during this process. It is important for the caregivers to have a clear understanding of their loved one’s baseline behaviors and quality of life. If your loved one has physical and/or cognitive disabilities, it is incredibly helpful to your healthcare team if you create a plan that outlines the best ways to communicate with your loved one should he/she be admitted to a hospital.

Caregiver mental health

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. It is important to recognize the signs of caregiver burnout and track your personal caregiver zone so you can recognize when you need to ask for help.

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.

Grief & bereavement

All caregivers should prepare for the possibility of grief or bereavement during the care of a loved one. Caregivers naturally become deeply emotionally invested in the individuals for whom they provide due to the nature of the position. Serving as a caregiver causes a range of emotions including feelings from happiness and grief throughout the lifespan.

Many caregivers experienced grief starting at the time of tuberous sclerosis complex (TSC) diagnosis—grief is not linear process, but circular. Often the caregiver travels through a grieving process that leads to a baseline state of worry, stress, and frustration. However, even during this process, there will be times of excitement, joy, and immense gratitude that mixes with the grief—creating a blended “chaotic comfort zone.” In the time of the loss of a loved one, it is often difficult to accept moving from the chaotic comfort zone to bereavement and once again having to redefine expectations for short- (daily) and long-term life. This adjustment often requires reevaluation of personal identity and worth.

As you continue to heal from your loss, it is typical to shift from focusing on how your loved one died to focusing on how much they lived. This leads to a process in bereavement where you recognize even in personal loss, your bond with your loved one is to be remembered and cherished. Often, the caregiver will identify a path forward that honors the loss of the loved one. Regardless of the nature of the death, if it was abrupt or expected, you are not alone. Grief is possible at any time and without warning. There is no guide to the grieving process, it is unique to a person. It is important not to drown in others’ expectations of how you should behave. In fact, it is crucial to not let others define how you process grief—you are the architect of your own journey.

If you feel like you don’t know where to start or would like to reach out to others who have been down this road before, seek support from other special needs caregivers and families. Hearing about how they coped with this difficult transition and what worked for them in the healing process may help guide your own journey.

If you or someone you know is going through grief or bereavement, please reach out to one of our TSC Support Navigators for additional assistance.

LGBTQIA+ community and TSC

The TSC Alliance supports people with tuberous sclerosis complex (TSC) who are LGBTQIA+; therefore, the unique and unfortunate challenges experienced in this community are just as important to address as all other barriers and challenges along this journey. Many will face the triple discrimination of living with a genetic disorder, coping with a TSC-associated neuropsychiatric manifestation and grappling with gender identity all greatly impact the level of stress, social stigma and discrimination compared to cisgender peers with TSC. It is essential to reinforce that identifying as LGBTQIA+ is not a mental health illness.

Sadly, many LGBTQIA+ individuals experience significant disproportionate mental health struggles including suicide. We acknowledge that exclusion, access to care and lack of safety create additional barriers to your overall health and wellbeing. In addition to the above recommendations for self-care surrounding mental health, make sure you have the right healthcare team to not only address your TSC needs but your personal and physical well-being too.

The GLMA Provider Directory is the recommended resource to locate a LGBTQI+ friendly provider to help manage your overall healthcare needs. Your safety and the ability to feel comfortable sharing your identity with family and friends can be difficult, which is why we recommend The Epilepsy Foundation’s Epilepsy & Seizure Helpline in English (1-800-332-1000) and Spanish (1-866-748-8008), which is a free, confidential helpline available 24 hours, 7 days a week. Additional mental health resources for LGBTQIA+ individuals are available in our navigation guides below. We also encourage you to contact one of our TSC Navigators if you have any questions or concerns about navigating your journey.

Self-care & mental health

Being diagnosed with tuberous sclerosis complex (TSC) can cause significant challenges within the life of the individual regardless of when first diagnosed. It is essential to understand acknowledging that life is different can be difficult for some while for others it might seem relieving to finally have a “name” to the issues they’ve experienced for several years.

It is completely valid and okay to have mixed emotions and process the reality that everyone’s “normal” is no longer the same. Another important factor to consider is that despite the wide range of neurocognitive abilities for those with TSC, discrimination can appear different as the individual gets older. The emotional challenges can be just as debilitating as physical challenges and significantly trigger ineffective coping mechanisms, stress, and anxiety.

Reviewed by Ashley Pounders, MSN, FNP-C, November 2023.

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