Coping with the quiet tax of elder caregiving
Fact checked by Shannon Sparks
People who receive care from family members often have better health outcomes than those who do not. But for those providing that care, the unspoken mental and emotional toll can be profound.
Caregiving’s psychological impact varies widely. It can depend on whether the role began in a crisis or evolved gradually, says Denise Brown, founder of the Caregiving Years Training Academy, an organization that provides training and resources for family caregivers. Other factors include the caregiver’s relationship with the recipient, the recipient’s condition and prognosis, and whether the role was a choice.
Caregivers take on a wide range of responsibilities, often while carrying anticipatory grief. For adult children, the role can trigger a complex mix of emotions as they care for the people who once cared for them.
Brown does not hesitate to say caregiving can feel like a burden. She has identified 19 systems caregivers must learn to navigate, including the healthcare system, employment, and personal care.
In many cases, caregivers are not only navigating the healthcare system; they’re also delivering care themselves. The U.S. health system relies heavily on unpaid family caregivers providing medical support without formal training. A caregiver may perform wound care without instruction, track blood pressure, administer insulin, or manage chemotherapy side effects.
“The public perception of a caregiver is somebody who’s helping someone with specific tasks like walking, medications, or transportation,” says Minakshi Raj, PhD. Raj directs the University of Illinois Aging, Caregiving, and Technology Lab, which develops and evaluates policies, healthcare services, and technologies to support family caregivers. In reality, she says, caregivers are “de facto members of the healthcare system.”
The caregiver identity shift
Even before becoming a caregiver, Luciana Penn identified as a “giver and a rescuer.” She has cared for her mother, who has Parkinson’s disease, for eight years and now shares a home with her and Penn’s sister to provide support.
Penn, an occupational therapist, says her medical background offers advantages. Caregivers with healthcare experience often have stronger health literacy and a better understanding of the system. But Penn says her past experiences with patients with Parkinson’s also heightened her anxiety, making her hypervigilant about her mother’s health.
Caregiving’s emotional strain is widespread. Some 40% of family caregivers report rarely or never feeling relaxed, according to a 2023 AARP report. Research also shows that many caregivers feel unable to plan, travel, or build relationships because of the demands of the role.
Though caregiving gave her a sense of purpose, Penn says a lack of boundaries left her feeling depleted and overwhelmed. Her life felt out of control — as if “the ship had been turned completely around” — with personal goals pushed aside.
“When it comes to your family, it’s different. Sometimes it’s harder to see,” Penn says.
She began to mask her struggles with friends.
“I know they don’t want to hear my story and what I’m going through,” she says. “So I began to just shut down. I began to close people out.”
Researchers describe this experience as role captivity. Many caregivers use more straightforward language: feeling trapped. Brown recalls one caregiver who searched online daily for how to quit caregiving — along with, “Who am I going to be when this is over?”
Penn regained a sense of control by setting boundaries, letting go of unhelpful relationships, and learning how to say no without guilt. She says she now feels more present and able to spend meaningful time with her mother without feeling obligated.
This shift reflects the final stage of long-term caregiving, Brown says. She cites several ways caregivers can build resilience: practicing readiness, understanding their roles, honoring relationships, confronting realities, and recognizing rewards. Brown also emphasizes the importance of naming emotions without judgment, which preserves energy, particularly in the early stages of caregiving.
