Podcast Summary: Uncared For – "Living Long Enough to Be a Caregiver"

Season 3 of "Uncared For" by Lemonada Media, hosted by award-winning journalist SuChin Pak, delves deep into the intricacies of the American healthcare system, particularly focusing on the unique challenges faced by the LGBTQ community as they age. In the episode titled "Living Long Enough to Be a Caregiver," released on June 5, 2024, SuChin Pak engages in a heartfelt conversation with Vince Crisostomo, a prominent figure in the San Francisco AIDS Foundation, to explore his personal journey and broader systemic issues.

Introduction to Vince Crisostomo

At the outset of the episode, Vince Crisostomo shares his initial fears and realities upon being diagnosed with HIV in 1989. Living in New York City during the height of the HIV/AIDS epidemic, Vince worked at a club to support himself but was devastated by his diagnosis.

Vince Crisostomo [00:21]: "At age 28, I couldn't imagine actually living long enough to see my parents age, let alone grow old myself."

Facing Stigma and Family Rejection

The revelation of his HIV status prompted Vince to confront his fears of acceptance. He bravely decided to come out to his parents, a decision that ultimately led to familial rejection.

Vince Crisostomo [01:03]: "I mean, I remember getting that letter saying, you're not welcome to come home. My mom disowned me, basically told me I was no longer welcome to come back."

Overcoming Adversity and Becoming a Caregiver

Defying the grim prognosis of the late 80s, Vince not only survived but thrived, surpassing the age his doctors expected him to reach. His longevity allowed him to transition from being cared for to becoming a caregiver himself, especially as his aging parents began to require assistance.

Vince Crisostomo [02:20]: "I have been living with HIV since 1987, and initially finding out that you were living with HIV was a death sentence. I was told I wouldn't live to see 30. You know, I'm now 63."

Addressing Challenges in the LGBTQ Community

Vince elucidates the myriad challenges faced by LGBTQ individuals as they age, emphasizing the lack of traditional family support, housing instability, and mistrust of the healthcare system.

Vince Crisostomo [03:41]: "For my generation, we didn't have families. There's still a lot of internalized issues that come up. A lot of people burnt out, taking care of their friends."

Caring for Jesse: A Deep Personal Journey

A poignant section of the episode recounts Vince’s relationship with Jesse Far, his partner who was also battling HIV/AIDS. Their love story is marked by care, sacrifice, and profound loss.

Vince Crisostomo [07:30]: "I have HIV. I tested HIV positive... I have AIDS."

Their relationship saw Vince taking on the role of Jesse’s primary caregiver, navigating the complexities of medical care, emotional support, and the eventual heart-wrenching loss of Jesse in 1991.

Vince Crisostomo [10:16]: "I started resenting that. I did not leave New York to become a caretaker. But then I realized that I had a choice."

The Impact of COVID-19 on Caregiving

The narrative transitions to the COVID-19 pandemic, drawing parallels between the fears Vince faced during the HIV/AIDS crisis and the challenges posed by the pandemic, especially in long-term care facilities.

Vince Crisostomo [20:00]: "I was really aware that the chances of us getting through this without them getting it were, were really slim."

Vince recounts the daily anxieties of checking on his parents, the stringent quarantine measures, and the emotional toll of witnessing his father's deteriorating health leading to his passing in 2021.

Caring for His Parents: A Role Reversal

Vince describes the difficult transition from being disowned by his mother to becoming her primary caregiver. This role reversal is both emotionally taxing and transformative, leading to eventual reconciliation.

Vince Crisostomo [28:32]: "If she hadn't done what she has done, I wouldn't be who I am."

Reflections on Caregiving and Relationships

The episode delves into the complexities of caregiving, especially when past relationships with parents are strained. Vince shares his journey toward making peace with his mother and building a meaningful relationship in their twilight years.

Vince Crisostomo [27:23]: "I'm making peace with my mom since she disowned me all those years ago."

Broader Implications for Caregivers

Soojin Pak broadens the discussion by sharing Teresa's story, a single mother caring for her abusive mother with dementia. This juxtaposition highlights the diverse and often painful experiences of caregivers, emphasizing the need for community support and healthy boundaries.

Teresa [29:33]: "It's very, very difficult now to take care of somebody who I know would never have done the same for me."

Conclusion: Building a Supportive Community

The episode concludes with a powerful message about the importance of community support in caregiving. Vince's story underscores the resilience required to navigate caregiving roles, especially within marginalized communities.

Soojin Pak [31:26]: "We have to lean on our communities to get through the overwhelming days. That's how we create a world we all want to age into."

Key Takeaways

• LGBTQ Aging Challenges: Vince highlights the lack of traditional family support, housing insecurity, and systemic mistrust as significant barriers for aging LGBTQ individuals.

• Personal Sacrifice and Resilience: Vince’s narrative is a testament to personal resilience, highlighting the sacrifices made by caregivers within the LGBTQ community.

• Impact of Epidemics on Caregiving: Both the HIV/AIDS crisis and the COVID-19 pandemic have profoundly impacted caregiving dynamics, especially in marginalized communities.

• Reconciliation and Healing: Vince’s journey from being disowned to becoming a caregiver for his parents illustrates the potential for reconciliation and healing in strained familial relationships.

• Community Support is Crucial: The stories shared emphasize the necessity of community support systems in alleviating the burdens of caregiving.

Notable Quotes

• Vince Crisostomo [02:20]: "I have been living with HIV since 1987, and initially finding out that you were living with HIV was a death sentence. I was told I wouldn't live to see 30. You know, I'm now 63."

• Vince Crisostomo [07:30]: "I have HIV. I tested HIV positive... I have AIDS."

• Vince Crisostomo [28:32]: "If she hadn't done what she has done, I wouldn't be who I am."

Final Thoughts

"Living Long Enough to Be a Caregiver" is a profound exploration of the intertwined journeys of aging, caregiving, and LGBTQ identity within a faltering healthcare system. Vince Crisostomo's story serves as both a personal memoir and a call to action, urging listeners to recognize and support the unique challenges faced by LGBTQ caregivers and their loved ones.