Health First Expert Shares How Grief, Guilt and Resilience Shape the Caregiving Journey

Caregiver Fatigue Is Real — and You’re Not Alone

BREVARD COUNTY, FLORIDA — By the time many caregivers reach out for help, they’re already deep in the trenches — emotionally exhausted, mentally scattered and physically drained.

For DeAnn R. Collins, MSW, LCSW, Behavioral Services Clinical Manager at Health First, the signs are familiar — and personal. She cared for her own mother prior to her passing.

Whether it’s Alzheimer’s, cancer, ALS, or any chronic, life-threatening condition, caregivers face a heavy emotional toll that often goes unseen — grief, guilt, resentment, and burnout. And for many, those feelings persist even after caregiving ends.

In Brevard County, 32.7% of adults serve as caregivers which is higher than the national average of 22.8%, according to the 2025 Community Health Needs Assessment. Many step into the role out of love or necessity, only to be overwhelmed by responsibilities they never anticipated.

“There’s a wide range of feelings that people might experience as they’re coming to terms with what it means for them in their life to be that caregiver,” Collins said.

That emotional weight includes what Collins calls anticipatory grief — the mourning that begins before someone is gone. For those caring for loved ones with progressive illnesses like ALS or dementia, the trajectory of the relationship changes. What once felt predictable now feels uncertain.

“In our minds, we often have this expectation of where things are going with a relationship,” Collins said. “And it completely does a 180.”

Guilt often follows, particularly when caregivers try to carve out time for themselves. Collins said it’s a difficult mental battle: taking care of yourself can feel like you’re not taking care of your loved one.

“It can be hard to reconcile,” she said. “But in order to care for them, we have to care for ourselves.”

Collins has seen firsthand how the emotional and physical strain of caregiving can take a toll on health — sometimes even more than the person being cared for. Sleepless nights, chronic stress, and skipped doctor appointments all add up.

“Irritability is one of the first signs,” she said. “Maybe I’m not as patient with the person I’m caring for. And I constantly would remind myself — they’re doing the best that they can.”

Collins knows that telling caregivers to simply take a break can feel unrealistic. Instead, she encourages something more accessible: give yourself permission. Acknowledging the need for rest isn’t selfish — it’s essential. Taking time to recharge helps caregivers show up more fully and consistently for the people who rely on them.

Self-care doesn’t have to mean expensive spa days or vacations. In many cases, it’s about finding brief, meaningful moments to reconnect with yourself — whether that’s journaling in the early morning, stepping outside for a few quiet minutes, or taking a walk around the block. These small pauses can offer a surprising amount of relief.

Basic health needs often fall by the wayside too. Collins encourages caregivers to prioritize their own well-being: eat nourishing meals, attend regular doctor appointments, limit alcohol, and aim for consistent, restorative sleep. While these habits can be difficult to maintain under stress, they’re crucial to avoiding burnout.

“As caregivers, we often put ourselves last,” Collins said. “But maintaining your own health is not optional — it’s part of being there for someone else.”

As caregiving continues, family dynamics often shift — especially when adult children become the primary decision-makers for aging parents. That change can bring up feelings of resentment, grief, or guilt.

Caregivers may find themselves mourning the loss of personal plans or freedom as they adjust to their new roles. Collins urges people in this position to offer themselves the same compassion they extend to others. Grace, she says, can be a powerful tool for resilience.

In addition to emotional strain, caregivers frequently face legal and logistical pressures. Questions around power of attorney, long-term care, and medical decision-making can add overwhelming complexity. The Center for Family Caregivers in Melbourne helps ease that burden by offering free support groups and educational resources, including legal guidance and caregiver training.

When a loved one is hospitalized or begins transitioning into long-term care, hospital social workers are a vital resource. They can help families navigate next steps and identify appropriate support services. Collins encourages caregivers to also build relationships with the care teams at facilities — people who become part of the extended circle of care.

Even in the most difficult seasons, she reminds caregivers to seek out meaningful connection and moments of joy. That might look like reminiscing with a photo album, sitting together to watch the birds outside, or simply sharing a quiet moment over coffee. These simple interactions can help caregivers stay grounded and emotionally connected to their loved ones.

Knowing what lies ahead can feel overwhelming, but it can also bring clarity. That awareness becomes a chance to be present, to find purpose in small moments, and to make the most of the time that remains. For many caregivers, that shift in perspective is not only healing — it’s a gift.

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