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” which 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 in this journey it is important to take 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’s “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.

Caring for a loved one with a rare disease such as TSC, means having to work especially hard at finding balance. It is all too common for caregivers in our community to find themselves without a sense of balance in their lives. Too often, caregivers will find themselves exhausting their mind and body in effort to provide the very best for their loved one while neglecting their own basic needs.

In the midst of being overwhelmed it can also be challenging to even know where to start, how to recognize if you are close to “burning out,” and what action steps you can take to create healthy boundaries so you can live your fullest life. Signs and Symptoms of Caregiver Burnout is a guide that can help you scan physical, emotional, and behaviors that are common signs and symptoms of caregiver burnout. Finding your Caregiver Zone is a working guide that can help you gauge the amount of stress you are currently under. Stress levels constantly ebb and flow – you may have seasons where you fluctuate between the different Caregiver Zones. That is normal and to be expected. Once you have had time to implement this you start to uncover trends in your life and be able to start proactively empowering strategies that work for you and your family dynamic. It is not about surviving this life, it is about uniquely thriving the best you can with the resources you have. In the How to Help Me worksheet and tips, you will find a list of examples that you can customize to fit your own needs. As caregivers going through difficult times you often hear, “how can I help you.” Yet, you might not even know that because you are already in a crisis and decision fatigue is already setting in. Having a go to list that you can show to others not only helps you but helps those in your inner circle to know how to truly help you. Respite care is an important part of your self-care plan, yet often overlooked. Here is a helpful resource on Respite Care.

Remember, you do have control in these situations, and it is up to you to tell folks how to help you. Developing this guide is important to do during a conflict-free time (or crisis-free), it might even be helpful to you to reassess this list after a state of conflict/crisis to ensure that it is still working for you. If you are just starting this process and you are in conflict, go ahead and start writing things down! This is for you, and you can control what is on it and how you reevaluate your own needs. Lastly, the Family Caregiver Alliance has excellent resources on how to manage your stress.