Renee Mustered on Caregiver Grief and How Her Experience Inspired the Vilomah App

Caregivers are often praised for being the person who can handle everything. They are expected to stay composed through hospital stays, difficult medical decisions, sleepless nights, and uncertainty, often putting their own physical and emotional needs aside while focusing on the person who depends on them. What receives far less attention is what can happen after the crisis ends, when there is finally time to process everything that happened. For some caregivers, the end of an intense period of responsibility can bring a delayed physical and emotional reaction.

The scale of caregiving in the United States illustrates just how much responsibility families are carrying behind the scenes. Family caregivers provide the majority of long-term services and supports for adults with disabilities and complex health needs, helping with everything from daily activities and complex medical tasks to coordinating medical and social services, often without pay. According to Caregiving in the U.S. 2025, the 59 million people caring for adults provided an estimated 49.5 billion hours of care in 2024. Valued at an average of $20.41 per hour, that unpaid contribution amounted to approximately $1.01 trillion in economic value. These numbers show that caregiving is not simply an occasional responsibility for many families. It can represent years of sustained physical, emotional, and practical demands.

That burden can carry significant consequences for mental health as well. A systematic review and meta-analysis found that between 30% and 70% of caregivers experience clinically significant symptoms of depression, while approximately 10% to 25% meet the diagnostic criteria for major depression. The findings illustrate why the emotional effects of caregiving deserve attention, particularly when someone has spent an extended period responding to another person’s complex needs.

Renee Mustered, founder of Vilomah, experienced that transition after her son, TJ, suffered a severe traumatic brain injury in a motorcycle accident. A lineman by trade, TJ spent eight months in the hospital following the accident. Although he recovered enough to return home for a period, serious complications followed, including an MRSA infection and sunken flap syndrome. His condition eventually deteriorated, and Renee, acting as his power of attorney, made the difficult decision to bring him home to pass away.

When the Caregiving Role Suddenly Ends

The months that followed brought a different kind of struggle. After spending so long focused on her son’s care, Renee Mustered was suddenly left with grief as well as the physical and psychological consequences of everything she had endured. She experienced panic attacks, anxiety, severe triggers, and periods when she felt unable to leave her home. Ordinary activities became difficult, and she sometimes relied on grocery delivery because going outside could trigger overwhelming reactions. She has described feeling essentially paralyzed in bed for extended periods, and it took years before she felt she was functioning again.

Her experience points to an often-overlooked part of caregiving: the effects of prolonged stress may not disappear simply because the immediate crisis has ended. During a medical emergency, the priority is usually getting through the next day. Exhaustion, fear, and emotional distress can remain in the background because there is little time to address them. Once the responsibility changes or ends, those reactions may become much harder to ignore.

How Renee’s Experience Shaped Vilomah

After experiencing how isolating grief could become, Renee wanted to create something that could give people a place to express what they were feeling without having to explain their grief from the beginning every time. That experience became part of the motivation behind Vilomah, an AI-enabled grief-support app focused on giving people a space to express their thoughts and experiences around grief and loss.

Vilomah includes Ai.ngel Support, an AI-based tool that allows users to speak or type about their experiences with grief and loss. Rather than focusing on giving quick solutions, the tool is designed to respond to what someone is expressing and provide a space for reflection. It can also retain certain details from previous conversations, allowing the experience to feel more continuous over time.

For Renee, the goal is not to suggest that technology can replace human connection, professional support, or the grieving process itself. Instead, Vilomah grew out of her understanding that grief can surface at unexpected times, including moments when someone may simply need a place to put their thoughts into words.

Learning to Recognize What the Body Needs

For Renee, recovery involved becoming more attentive to those signals rather than automatically pushing through them. She began recognizing when she needed sleep, when she needed a break, and when emotionally difficult situations were taking more from her than she could reasonably give. She also learned the importance of stepping away from her phone and creating periods when she was not absorbing other people’s opinions, expectations, or demands.

There is no single recovery method that works for everyone. Walking or exercise may help one person reconnect with their body, while another may need quiet, meditation, music, time outdoors, or simply more sleep. After spending months or years responding to another person’s needs, recognizing your own can become an unfamiliar skill.

For caregivers, recovery may therefore involve learning to notice those needs without treating them as an inconvenience or a sign of weakness.

The Problem With the “Unshakeable Caregiver”

The pressure surrounding the idea of the “unshakeable caregiver” can make that process more difficult. Society often admires people who appear capable of handling everything without showing how deeply an experience affects them. But appearing strong and actually being okay are not necessarily the same thing.

“Everybody is human,” Renee says, challenging the expectation that people should simply move on or remain composed because others are uncomfortable witnessing their pain. That expectation can make it harder for caregivers to acknowledge when they are struggling. After months or years of putting someone else’s needs first, they may also feel guilty when they finally begin prioritizing their own.

Being affected by a traumatic experience does not erase a person’s strength. In some cases, recognizing that something has taken a toll may be the first step toward addressing it.

Recovery May Require Adapting, Not Going Back

Image Courtesy of Renee Mustered

There can also be an assumption that once the immediate crisis has passed, a caregiver should be ready to return to the person they were before it began. Recovery does not always mean recreating the life that existed before the loss or trauma. Sometimes it means adapting to a reality that has fundamentally changed.

That can involve changing routines, setting boundaries, saying no to situations that feel overwhelming, and accepting that certain traditions or expectations may need to look different. For someone who has spent years putting other people first, those changes can feel unfamiliar. Yet acknowledging personal limits does not mean caring less about others.

Renee describes this as learning to give herself grace and becoming more willing to acknowledge the parts of herself that had previously been pushed aside. Rather than expecting herself to immediately return to who she was before her loss, she began allowing herself to adapt to what life looked like afterward.

Grief Does Not Have to Follow a Timeline

For caregivers and grieving people, healing does not necessarily mean becoming unaffected by what happened. Grief can continue to arrive in waves, sometimes long after someone believes they should be “over it.” A difficult day does not necessarily mean a person has gone backward, just as a good day does not mean the loss has been forgotten.

The pressure to perform recovery can sometimes become another burden. People may compare themselves with friends who seem to have moved forward faster or feel guilty when they continue to struggle. But grief is not a competition, and there is no universal timetable for rebuilding a life after profound loss.

Renee’s advice is to surrender to the grieving journey rather than spend years fighting against the fact that it hurts. Giving yourself grace, she believes, is part of moving forward. The goal is not necessarily to return to the person you were before the experience. It may be to understand what happened, acknowledge what it changed, and gradually learn how to live with what comes next.

For someone who has spent months or years caring for another person, that process can begin with recognizing that their own needs matter, too.