Uncared For – Episode: From Partner to Caregiver

Release Date: July 3, 2024

Introduction

In the latest episode of Uncared For, hosted by award-winning journalist Sujin Pak, listeners are introduced to Kim Moy, a dedicated spousal caregiver navigating the multifaceted challenges of caring for her ailing husband, aging parents, and young children. This episode delves deep into the emotional and practical struggles faced by caregivers, highlighting the systemic issues within the American healthcare system that exacerbate their burdens.

Kim’s Background and Early Responsibilities

Kim Moy’s journey into caregiving is deeply rooted in her upbringing within a multigenerational household. As the first-generation American in her family, Kim and her sister grew up with their grandmothers living under the same roof, a common practice in Chinese culture that emphasizes caring for elders.

Kim [03:01]: "My parents are immigrants and I was the first generation born here. Growing up with two of our grandmothers living with us was part of our tradition to take care of our elders."

Despite occasional conflicts between her grandmothers due to communication barriers, Kim cherished the time spent with them. However, the foundation of caregiving responsibility was laid early, shaping her perception and later, her expectations of family support.

The Onset of Caregiving Responsibilities

Kim's caregiving responsibilities expanded significantly in 2010, coinciding with the birth of her second son and her mother's diagnosis with Alzheimer's disease. Initially, her parents downsized to a retirement community, but the severity of her mother's condition soon necessitated more intensive care.

Kim [05:35]: "We started with hiring a caregiver for four hours a day, which gradually increased as my mother’s condition worsened."

The realization that professional assistance was essential came after a frightening incident where Kim's father had to be hospitalized due to food poisoning, revealing the dire state of her parents' health management.

Navigating a "Pressure Cooker" of Responsibilities

Balancing multiple caregiving roles, Kim describes her situation as being in a "pressure cooker," a testament to the mounting stress from various fronts.

Kim [13:40]: "I felt like I was being pulled in millions of directions—caring for my parents, managing my household with two young kids, and taking care of my husband."

Her husband's chronic illness, myalgic and symptoms encephalomyelitis (chronic fatigue syndrome), further complicated her responsibilities. This condition leaves him with persistent fatigue, brain fog, chronic pain, migraines, and an irregular heartbeat, limiting his ability to work and engage in daily activities.

The Emotional Toll and Ambiguous Loss

One of the most profound challenges Kim faces is the concept of "ambiguous loss," a term that resonated deeply with her experience as her husband remains physically present but emotionally and cognitively diminished.

Kim [22:05]: "Ambiguous loss is where the person you're caregiving for is still alive, but you've lost what they used to be. It lacks closure, and the grief remains unresolved because it's ongoing."

This ongoing nature of grief affects her relationship with her husband, making it difficult to maintain the emotional intimacy they once shared.

Kim [23:46]: "It's definitely as a partner, as a husband. The emotional intimacy is so limited now because of his condition."

Coping Mechanisms and Personal Growth

To manage her overwhelming responsibilities and emotional strain, Kim turned to Zen Buddhism, focusing on the principles of non-attachment and mindfulness.

Kim [27:30]: "In Buddhism, we talk about suffering and attachments. Practicing non-attachment helps me let go of how things used to be and accept the present reality."

Additionally, Kim has found solace and strength in building a support network, eventually pivoting her efforts towards supporting other caregivers through her website, Caregiver Wisdom. This initiative allows her to channel her experiences into helping others, fostering a sense of community and mutual support.

Kim [29:59]: "Supporting other caregivers is my passion. I don't want people to feel so lonely or have to figure it out all by themselves. There's so much power in community."

Societal Reflections and Call to Action

Reflecting on her experiences, Kim emphasizes the societal need to adopt a "village" mentality in supporting caregivers, rather than placing the entire burden on individual families.

Kim [30:39]: "It takes a village to support our aging parents and ill loved ones. It shouldn't be just one caregiver. We need services, support systems, and community involvement."

Sujin Pak echoes this sentiment, highlighting policy solutions such as enhanced Medicare benefits, clearer Medicaid support, and caregiver reimbursements to alleviate the financial and emotional strain on caregivers.

Planning for the Future

Acknowledging the hereditary nature of Alzheimer's in her family, Kim has proactively arranged for her own long-term care to ensure her children are not overwhelmed in the future.

Kim [32:04]: "I've bought an insurance plan with a long-term care rider to provide peace of mind and to ensure my kids aren't burdened financially."

She also engages her children in conversations about future care needs, fostering an understanding and preparedness from a young age.

Conclusion

Kim Moy's story is a poignant illustration of the immense challenges faced by spousal caregivers. Her journey underscores the urgent need for societal and systemic changes to support those who dedicate their lives to caring for others. Through community building and advocating for policy reforms, Kim exemplifies resilience and hope in the face of relentless adversity.

Kim [33:54]: "I see her eyes locked on mine. I can see the smile on her face. She's absolutely still here. And that is what makes me keep going."

Key Takeaways

• Ambiguous Loss: The ongoing grief experienced when a loved one is physically present but emotionally changed due to illness.
• Pressure Cooker Environment: Managing multiple caregiving roles can lead to extreme stress and burnout.
• Systemic Support Needed: Enhanced healthcare policies and community support systems are crucial for alleviating caregiver burdens.
• Personal Resilience and Growth: Finding coping mechanisms and pivoting towards supporting others can provide purpose and relief.

Notable Quotes

• Kim on Multigenerational Caregiving:
  "Growing up with two of our grandmothers living with us was part of our tradition to take care of our elders." [03:01]

• Kim on Ambiguous Loss:
  "Ambiguous loss is where the person you're caregiving for is still alive, but you've lost what they used to be." [22:05]

• Kim on Community Support:
  "There's so much power in community." [29:59]

• Kim on Personal Resilience:
  "I see her eyes locked on mine. I can see the smile on her face. She's absolutely still here. And that is what makes me keep going." [33:54]

Final Thoughts

Uncared For shines a light on the silent struggles of caregivers like Kim Moy, advocating for a more compassionate and supportive healthcare system. This episode not only raises awareness but also inspires actionable change, urging society to recognize and address the profound impacts of caregiving.