The Unspoken Truth About Caregiver Burnout: From Breaking Down to Building Resilience

I recently had the honor of sharing the challenges of chronic illness caregivers on the YouTube podcast "Unraveled: Understanding Complex Illness" hosted by well-regarded complex illness doctors Dr. Ilene Ruhoy and Dr. David Kaufman in Seattle. The conversation reminded me why I’ve chosen to switch careers to work as a caregiving coach. After about 20 years as a caregiver for my husband disabled from ME/CFS and my elderly parents, I've learned many strategies and practices to strengthen my resilience, deal with ambiguous loss, and navigate constant change. I’ve also learned that our experiences—messy, beautiful, and everything in between—have the power to light the way for others walking this challenging path so they can avoid caregiver overwhelm and burnout. Here are some highlights from our engaging 50-minute podcast episode: 

💕 When Love Meets Reality

When I met my husband over 20 years ago, he told me about his ME/CFS on our very first date. It was on the mild to moderate side – we could still go salsa dancing, just not every song I wanted to dance. We crafted a beautiful life together—a reduced version of what I'd envisioned, but still so wonderful. We got married, had two kids, and then his health took a nosedive about a year after our second child was born.

My husband struggled and at one point, he could no longer work. Suddenly, I was managing two young children, a full-time job leading a team, scheduling endless doctor's appointments and driving my husband to them, and helping care for my aging parents—including my mom who had Alzheimer's. I became the problem-solver, the chief household officer, the keeper of everyone's well-being, and even the social director. You hear about the challenges of the sandwich generation. I was in a pressure cooker situation. 

😔 The Weight We Carry

Family caregivers are expected to make personal sacrifices with very few safety nets and support structures to help with the challenges we face. What others don’t realize is that caregivers experience a lot of hidden challenges:

• Watching our loved ones suffer - This hits hardest of all. Talking about this made me tear up. 

• Losing our identity - We become so focused on caregiving that we forget who we are.

• Overwhelm from managing everything alone - Appointments, medications, insurance, disability paperwork, household duties, parenting, and more.

• The full range of emotions - Including anger, resentment, and guilt (yes, it's normal!)

• The isolation - Feeling like no one truly understands. This is partly due to changing relationships with your loved one, as well as family, friends, and work colleagues. And feeling too overwhelmed with everything to talk to others.
  

  

🌊 Understanding Ambiguous Loss

This is a term coined by Pauline Boss, and it perfectly describes what we experience: your loved one is still physically present but somehow altered. They're there in the next room or sitting beside you, but they're very different from how they used to be or how you thought they would be.

This creates a complex, profound grief that is hard to cope with. How do you mourn someone who's still here, but a very different version of themselves? How do you cope with the loss of the life you had imagined? How do you accept this new reality while still finding ways to live your best life? 🪷 Finding Freedom Through Non-Attachment

My journey led me to become a Zen student (my main Zen teacher is a longtime mentor who has ME/CFS herself), and one of the most transformative concepts I've learned is non-attachment. I share the monkey trap story about attachment in my “Thrive as a Caregiver” group courses: 

A monkey sees a peanut in a trap and reaches in to grab it. But once he has the peanut, his fist is too big to pull out. He's trapped—not by the trap, but by his unwillingness to let go of what he thinks he needs.

We suffer when we attach too strongly to how things used to be, how we want them to be, or how we thought they would be. Non-attachment doesn't mean not caring—it means feeling your grief, your anger, your fear, and then letting it go instead of getting stuck in it. 

🎯 The Path Forward: Radical Acceptance What I’ve learned about resilience and teach in my “Thrive as a Caregiver” group courses:

• Your life may feel smaller, but it can still be beautiful

• You can experience both grief and joy - they're not mutually exclusive

• Small acts of self-preservation matter - A quiet cup of tea, restorative breathing practices, a 5-minute call with a friend

• Community is essential - You need people who truly understand your journey

• The landscape has changed, but you can still thrive
  

  

🌺 You Don't Have to Walk This Path Alone After nearly 20 years of searching for ways to cope, I've compiled everything I've learned into my “Thrive as a Caregiver” group coaching programs. I also continue to host free monthly support group meetings that touch on some of the topics we cover in the more in-depth program. 

What I Want You to Remember:

Your feelings are valid—all of them. Your needs matter. Your well-being is not selfish; it's essential for both you and your loved ones. You're not just surviving this journey; you have the potential to find meaning, purpose, and even joy within it. I absolutely have. 

The work I do through Caregiver Wisdom isn't just my profession—it's my life's work born from walking this path myself. Every support group session, every coaching conversation, and every newsletter comes from the deep understanding that we need each other.

I see you. I understand the weight you carry. And I want you to know that even in the midst of all this challenge, you have the capacity to build resilience, find moments of joy, and create a beautiful life—just different from what you had imagined.

With Care, Kim