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.
