Learning to Cope, Survive, and Care: A Conversation with Former Governor Martin Schreiber

Caring for a loved one with Alzheimer’s is one of the most challenging and transformative experiences a person can face. Few understand this truth more deeply than former Wisconsin Governor Martin “Marty” Schreiber, who spent 20 years caring for his wife Elaine through every stage of dementia. His journey—documented in his acclaimed book My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver—has since shaped his life’s mission: helping caregivers understand the emotional, physical, and spiritual realities of Alzheimer’s disease.

Trusted Life Circle (TLC) recently sat down with Governor Schreiber for an in-depth conversation about caregiving, loss, resilience, and the hope he found through community and understanding. What follows is a reflection on that discussion and the wisdom he generously shared.

A Governor’s New Calling: From Public Leadership to Personal Advocacy

When most people hear Marty Schreiber’s name, they think of leadership, civic duty, and public service. But in the interview, Schreiber notes that his most profound role came later in life—one he never expected to inherit.

“I was switched involuntarily,” he says. “As governor, I determined policy for millions of people. But as a caregiver, everything becomes one-on-one.”

His shift into caregiving was gradual. Long before the diagnosis, subtle changes emerged: Elaine getting lost on familiar drives, struggling with recipes she once mastered, or recalling events that never happened. These early signs marked the beginning of what Marty calls “the second Elaine”—the loved one shaped by Alzheimer’s.

Understanding the Disease — and Ourselves

One of the most powerful themes throughout the interview is Schreiber’s acknowledgment of his own early misunderstandings.

“I was ignorant of the disease,” he admits. “And if there’s one thing worse than Alzheimer’s, it’s ignorance of Alzheimer’s.”

This realization became a cornerstone of his caregiver philosophy: you cannot help your loved one live their best life possible unless you understand what the disease truly is—and what it changes inside the caregiver.

He describes the moment he had to confront how his reactions, corrections, and frustrations were impacting Elaine. Every “No, that didn’t happen on Thursday,” every moment of insisting she return to his world only pushed both of them deeper into despair.

The turning point came when he recognized that the role of a caregiver isn’t to fight Alzheimer’s. It’s to join the world of the person who now is.

The Emotional Toll: Caregiving as a Life-Threatening Responsibility

Schreiber is candid about the harsh truth many caregivers experience but rarely say out loud: caregiving can be deadly.

“If caregivers don’t take care of themselves, they have a 40% chance of dying before their loved one due to stress-related illness,” he says.

He openly discusses his own downward spiral—exhaustion, weight gain, emotional burnout, and eventually heavy drinking. It wasn’t until an intervention by his children that he fully grasped how deeply the stress had consumed him.

“To ask for help is a sign of strength and courage,” he emphasizes. “You cannot do this alone.”

His honesty in describing his own struggles gives permission for caregivers everywhere to acknowledge their limits, vulnerabilities, and need for support.

The Role of Community: Why Caregiving Cannot Happen in Isolation

One of the most moving reflections in the interview is Schreiber’s insight into loneliness—both for the caregiver and the loved one.

“Alzheimer’s is not a chicken casserole disease,” he explains. When someone breaks a hip or has surgery, casseroles arrive, visitors check in, and support appears. But when a loved one has dementia, many friends simply don’t know what to say or do, so they stay away.

That isolation can be devastating. For Schreiber, the turning point was learning to ask for help—from neighbors, counselors, family, and his broader community. Once he started opening up, he found a new sense of connection and support he didn’t realize he needed.

Caregivers often don’t know how to define their community. Schreiber urges them to start simple: one person who listens, one neighbor who offers support, one family member who checks in. That small circle becomes the foundation for resilience.

Moments of Joy: What It Really Means to “Join Their World”

Among the most touching parts of the interview are the small, everyday moments Marty recalls with Elaine.

A walk where she pauses to admire a flower.

Sitting together watching leaves blow across the lawn.

Holding hands in silence.

These moments, though simple, represent profound shifts in mindset.

“In the beginning,” he recalls, “I resisted these interruptions. I wanted to finish the walk. I thought structure mattered more than presence.”

The caregiver in him learned that the real goal wasn’t completing the walk or correcting the timeline of a story. It was creating moments of joy, however small.

As he says:
“It isn’t necessary for our loved one to know our name in order for hearts to touch.”

The Pivot: When Loved Ones Fully Enter Their Own World

Schreiber describes a critical stage he calls “the pivot”—the moment when a person with Alzheimer’s fully transitions into their own inner world. Paradoxically, he describes this moment as a kind of blessing. The anxiety, confusion, and internal conflict fade. Their emotional distress lessens.

But caregivers face their own pivot: they must let go of the person who once was and learn to embrace the person who now is.

This acceptance is painful, but essential. It allows the caregiver to shift from fighting the disease to supporting the experience.

A Book for Caregivers Everywhere: Why He Wrote My Two Elaines

Schreiber wrote My Two Elaines because he wished he had learned sooner what he now teaches caregivers.

He saw friends yelling at their spouses out of fear and misunderstanding—just as he once had.

He recognized how many caregivers were suffering silently.

He wanted to give people a guidebook for the journey he had walked often alone.

Like Dr. Spock did for new parents, Schreiber hopes his book becomes a starting point for anyone stepping into caregiving for someone with dementia.

Carrying Hope Forward

Ultimately, Marty Schreiber’s story is not just about caregiving—it’s about love, resilience, courage, and compassion. The lessons he learned with Elaine continue to uplift caregivers today, offering a roadmap through one of life’s most difficult responsibilities.

His message is clear:
There is hope. You are not alone. And you have the strength to help your loved one live their best life possible—without sacrificing your own.

Watch the Full Interview

Watch our full conversation with Governor Schreiber and hear his insights in his own words:

👉 Video Interview with Martin Schreiber – Now Live on YouTube

Learn more about Marty’s mission:

Website: https://mytwoelaines.com/

Buy the book: https://mytwoelaines.com/index.php/buy-the-book/

Buy on Amazon: https://www.amazon.com/Two-Elaines-Surviving-Alzheimers-Caregiver/dp/0785291695/ref=tmm_hrd_swatch_0