A PSP care partner talked about her experience in a recent New York Times article titled “The Quiet Rage of Caregivers.” Jennifer Levine, whose father had PSP, talked about the range of emotions felt by care partners which can be difficult to share.
“A lot of caregivers are afraid to express their anger, because they feel guilty,” Levine said.
Caring for someone with PSP or a different neurological or medical condition can take an emotional toll, in addition to physical and financial ones. The article describes “The Centers for Disease Control and Prevention, which calls caregivers the ‘backbone’ of long-term home care in the United States, has warned that caregivers face many risks – anxiety and depression, chronic health conditions and financial strain, to name just a few. Yet experts said many caregivers feel they cannot speak openly about their frustration and anger.”
It can be immensely helpful to recognize and name the variety of emotions that can arise over the caregiving journey, including anger, in order to normalize, understand and cope with them. It is equally important to reach out for help, through asking friends and family to step in, exploring professional care services, finding time away from the caregiving role or working with a mental health therapist. For Levine, she found solace and support from her peers after starting a Facebook group for millennial caregivers.
CurePSP is grateful for Levine’s courage in telling her story and the NY Times’ role in spreading awareness about PSP and the value, challenges and needs of family care partners. We encourage you to read the article here and to connect with other care partners in our community here.