National Caregivers Day Is Important — But Sustainable Care Requires More Than Recognition

Last week we celebrated National Caregivers Day. It offers a meaningful moment to recognize the millions of people supporting loved ones through illness, aging, and recovery. The acknowledgment matters. Caregivers deserve to be seen.

But for many families, caregiving doesn’t feel like something that fits neatly into a single day of appreciation.

Most caregivers are unpaid spouses, adult children, siblings, or close friends who never set out to take on the role. They don’t always identify themselves as “caregivers.” They are simply doing what needs to be done — coordinating appointments, managing medications, navigating insurance decisions, and trying to hold family life together while the healthcare system moves at an increasingly fast pace.

While awareness days shine a light on caregiving, many of the people carrying the heaviest responsibilities are too busy managing the realities of care to pause and feel recognized. And increasingly, those responsibilities are growing.

Today’s families are supporting loved ones who are leaving the hospital sooner, often at higher levels of medical complexity. The work of caregiving has shifted — quietly, but significantly — from emotional support to logistical coordination, clinical follow-through, and managing an ever-expanding stream of health information.

Recognition matters. But recognition alone doesn’t make caregiving sustainable.

Caregiving Is Rarely a Solo Role — Even When It Feels That Way

One of the most common dynamics families experience is the emergence of a “default caregiver.” Without formal discussion, one person — often the closest adult child or spouse — becomes the point person for decisions, communication, and coordination.

Other family members may care deeply, but distance, work responsibilities, or uncertainty about how to help can leave one individual carrying most of the load. Over time, this imbalance creates stress not just for the caregiver, but for the entire family.

Geography complicates things further. Families may be spread across cities or states, making it difficult to share responsibilities evenly. When healthcare decisions need to be made quickly, the person closest to the situation often becomes the voice — whether or not that role was ever clearly defined.

In many families, what actually drives stress isn’t just the volume of tasks — it’s the constant flow of information: discharge instructions, medication changes, specialist notes, quality reports, and insurance communications arriving from multiple directions at once. Without a shared way to manage that information, even well-intentioned families can feel disorganized and overwhelmed.

Caregiving works best when families move from assumption to intention: defining roles, communication patterns, and how health information will be gathered, organized, and shared.

Resilience Isn’t About Being Stronger — It’s About Building Structure

Caregiver resilience is often framed as a matter of endurance: self-care, positivity, or simply pushing through difficult moments. But in practice, sustainable caregiving is less about strength and more about structure — and at the center of that structure is health information management.

Families who navigate complex care successfully tend to create systems that make information accessible, understandable, and consistent across everyone involved.

That structure might include:

• A designated medical communicator who tracks updates and instructions

• A centralized place for care plans, medication lists, and provider contacts

• Written summaries of visits to reduce confusion later

• Regular family check-ins where information — not just emotion — is shared

• Clear documentation of decision-makers and advance planning preferences

When health information is scattered across text messages, paper folders, patient portals, and memory alone, the burden on caregivers grows exponentially. When information is organized, decisions become clearer, conversations with providers become more productive, and families feel less alone carrying the weight.

Without structure, even the most committed caregiver can feel overwhelmed — not because they lack resilience, but because modern healthcare generates more information at a breakneck speed than any one person can realistically manage in isolation.

When Caregiving Breaks Down, Outcomes Are Affected

Caregiver burnout is often discussed in emotional terms, but its impact is also clinical.

When families are overwhelmed or unclear about the plan — or when health information is fragmented — important details can fall through the cracks:

• Follow-up appointments may be delayed or missed

• Medication instructions can be misunderstood

• Warning signs of complications may go unnoticed

• Communication gaps between providers widen

These aren’t failures of commitment. They are predictable consequences of asking families to manage increasingly complex care without clear systems for tracking and understanding information.

In many cases, caregivers are also trying to interpret publicly reported quality data, insurance network limitations, and changing discharge timelines — often without guidance on how those pieces fit together. The weight of those decisions doesn’t disappear after a recognition day ends. And when the caregiver isn't the decision maker, delays are inherent and potentially very impactful to clinical outcomes.

Practical Ways Families Can Build a More Sustainable Care Plan

While every situation is different, a few practical steps can help families move from reactive caregiving to a more sustainable approach:

1. Create a shared health information hub.
Whether digital or physical, having one trusted place for medication lists, provider contacts, and care plans reduces confusion and helps everyone stay aligned. Digital is recommended for the sake of portability. Paper records can cause confusion due to outdated information that is not updated in real time.

2. Identify a primary medical communicator.
Designate one person to track updates, clarify instructions, and ensure information is passed along accurately. This streamlines the flow of information and decision making. Family should all have a voice, but trust must be given to the decision maker to avoid seeking consensus in the moment. That just causes more delay.

3. Write down the “why” behind care decisions.
Documenting the reasoning behind recommendations helps families stay grounded when circumstances change. This practice is helpful for the primary communicator and decision maker when relaying decisions to the extended family. The goal is NOT to please everyone, but rather to help everyone understand why a decision was made.

4. Use available information — including quality data.
Publicly reported measures for facilities and home health agencies exist, even if they aren’t always highlighted during discharge planning. Organized information makes those comparisons easier. Interpreting the data can be confusing - this is where professionals like case managers, discharge planners and patient advocates can help.

5. Schedule proactive family check-ins.
Even brief conversations focused on information sharing — not just emotional updates — can prevent misunderstandings and reduce the burden on one person.

6. Recognize when support is needed early.
Caregiving doesn’t have to be a solitary effort. Bringing in guidance before a crisis deepens can help families maintain both clarity and balance. Crisis management rarely benefits the person receiving care.

Looking Beyond Recognition

National Caregivers Day reminds us to appreciate the people who step forward when loved ones need support. But the real work of caregiving happens quietly — in living rooms, hospital corridors, and late-night phone calls between family members trying to make sense of complex decisions.

Physicians and hospital teams want families to succeed, yet the realities of modern healthcare often leave limited time for the extended conversations caregivers need. Increasingly, families are discovering that having someone who can help organize information, translate care plans, and reinforce understanding isn’t adversarial to care — it strengthens it.

In the next piece, we’ll explore how patient advocates can serve as allies to physicians, hospitals, and families alike — helping ensure that the right information reaches the right people at the right time, long after the moment of discharge.