Editor’s Note: Recent SPM articles have given a high-level overview of the responses to some questions that the Society for Participatory Medicine suggested for the Beryl Institute – IPSOS PX Pulse: Consumer Perspectives on Patient Experience in the US (PX Pulse). Eric’s story demonstrates that maintaining a healthy relationship between patient and family caregiver requires persistent intentional effort.  Special thanks to Kevin Freiert for consolidating the Beryl data.

Caregiving is one of the most intimate roles a person can take on. Whether you’re supporting an aging parent, a partner with chronic illness, or a child with special needs, caregiving demands more than just physical effort—it requires emotional presence, patience, and above all, trust.

I remember when I became a family caregiver to my wife through her cancer surgery and treatments.  Even though we had a loving relationship, the ways in which I cared for her still came into question: “Is that what the doctor said to do?” “Are you giving me my meds on time?”  I understood her concern but wondered why her trust in me wasn’t a given.

Trust is the invisible thread that holds the caregiving relationship together. Without it, even the most well-intentioned care can feel hollow or transactional. But with it, caregiving becomes a powerful act of love and connection.

Trust Begins with Vulnerability

At the core of family caregiving is vulnerability. The care receipient often finds themselves relying on others for basic needs—bathing, eating, mobility, medication. This reliance can be uncomfortable, even frightening. It strips away feelings of independence and control.

For the caregiver, vulnerability shows up differently. It’s the emotional toll of watching someone you love struggle. It’s the fear of making a mistake, of not doing enough, of burning out. For me—a first time caregiver–trust was learned slowly, but eventually I understood it.  Trust, then, isn’t just about competence, it’s about emotional safety. It’s saying, “I see you. I’m here. You’re not alone.”

The Daily Rituals That Build Trust

Trust isn’t built in grand gestures but in small, consistent moments. The way I could gently adjust a pillow. The way I remembered my wife’s favorite snacks and routines. The way I would listen without rushing, speaking without judgment, and spoke honestly with the care team, even though it was hard.  Equally important was my ability to express my own feelings.  I felt saying “I’m feeling overwhelmed” or “I need a break” wasn’t a sign of weakness—it was a sign of authenticity. When both parties feel safe to speak their truth, trust deepens.

These daily rituals create a rhythm of reliability. Over time, they become a language of care. The care recipient begins to relax into the relationship, knowing they are seen and respected. The caregiver, too, finds meaning in these moments, recognizing that trust is a two-way street.

Communication Is Key

Open, honest communication is the lifeblood of trust. Family caregivers must learn to ask questions, not just give instructions. “How are you feeling today?” “Would you prefer this or that?” “Is there anything I can do differently?”

These questions empower the person receiving care. They remind them that their voice matters. They also help the caregiver avoid assumptions and stay attuned to changing needs.

Boundaries and Respect

Trust also depends on boundaries. Caregiving can blur the lines between personal and professional, between love and obligation. That’s why it’s essential to establish clear expectations and respect each other’s space.

For example, a family caregiver might need time off to recharge. The person receiving care might need privacy or autonomy in certain areas. Respecting these boundaries shows that the relationship is built on mutual dignity, not just duty.

Navigating Difficult Moments

No caregiving journey is without its challenges. There will be moments of frustration, miscommunication, and emotional fatigue. But these moments don’t have to erode trust—they can strengthen it.

When mistakes happen, own them. Apologize sincerely. Learn and adjust. When emotions run high, take a breath. Step back. Reconnect. These responses show that trust isn’t about perfection—it’s about resilience.

The Ripple Effect of Trust

When trust is present in family caregiving, it creates a ripple effect. The person receiving care feels more confident, more secure, more willing to engage with life. The caregiver feels more fulfilled, more connected, more capable of sustaining their role.

Beyond the immediate relationship, trust in caregiving can influence families, communities, and even healthcare systems. It sets a standard for compassionate care. It reminds us that at the heart of every medical chart, every diagnosis, every treatment plan, there is a human being who needs to feel safe.

Finally, family caregiving is not just a task—it’s a relationship. And like any relationship, it thrives on trust. Building that trust takes time, intention, and heart. But the rewards are profound: deeper connection, greater healing, and a shared sense of purpose.

Whether you’re a seasoned caregiver or just beginning your journey, remember this—every act of care is an opportunity to build trust. And in doing so, you’re not just helping someone live—you’re helping them feel truly alive.

What The Data Say

In the PX Pulse survey, several questions revealed insights on the perspectives of family caregivers.

• 89% of caregivers care for a family member, including 21% for a spouse or partner
• People tend to be caregivers for extended periods of time
• Most caregivers have difficulty navigating the healthcare
• Caregivers’ primary task is providing emotional support, followed by navigating care
• Caregivers turn to other family members for help more than any other resource
• Caregivers are most challenged by balancing caregiving responsibilities and personal commitments.

The data from SPM questions show that fewer than half the respondents felt that their providers involved their loved ones in ways that they wanted. Some statistically significant differences:

• Patients with life partners (42%) compared to single patients (33%).
• Annual incomes: below $50,000 (32%) compared to more than $100,000 (42%).
• Hispanic respondents (29%) compared to white/non-Hispanic (43%)

Link to the February 2025 PX Pulse  https://theberylinstitute.org/product/px-pul

Eric Bersh is board secretary for the Society for Participatory Medicine.