Living Long Enough to Be a Caregiver

Summary

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.

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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."

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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.

Transcript

[Soojin Pak]

Lemonade.

[Vince Crisostomo]

As a person with HIV, I was told I wouldn't live to 30. And, you know, I had never thought I would be around to take care of my parents.

[Soojin Pak]

At age 28, Vince Crisostomo couldn't imagine actually living long enough to see his parents age, let alone grow old himself. Back then, in the summer of 1989, he was living in New York City and he worked at a club to make ends meet. It was the height of the HIV AIDS epidemic and he had just been diagnosed as positive.

[Vince Crisostomo]

When I found out in 89, I knew I had to come out to my parents.

[Soojin Pak]

At the time, the very idea of coming out to his parents actually scared him more than the life threatening virus he'd just been diagnosed with. But he worked up the courage and did it. And not long after, he received a letter.

[Vince Crisostomo]

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.

[Soojin Pak]

So Vince couldn't count on his family for care or for anything. But decades later, as he beat the odds and lived well past 30, Vince's aging parents would need care from him. Thanks to years of taking care of his community during the HIV AIDS epidemic, Vince was ready when it came time to look after his parents. This time during a different global health crisis. COVID 19 this is uncared for. I'm your host, Soojin Pak. These days, Vince is a director of aging services at the San Francisco AIDS Foundation. His work is dedicated to sustaining a social support network for over 500 gay, bi and trans men. His goal is to create a world that LGBTQ people want to age to, and that work is especially important today because the reality is, for Vince and many of his peers, aging was always seen as a privilege they would never get to experience.

[Vince Crisostomo]

So 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. So we found, you know, throughout the 80s 90s, there was just a lot of death. People died almost as quickly as you found out. People disappeared. And that what happened in 1996, effective treatment was introduced. And so people started living. I remember there's a local gay newspaper called the Bay Area Reporter. There was a big deal when they had no obituaries, and so they found that people were living longer. Now the challenge comes is that these folks who thought they were going to die didn't Plan to live, didn't save, you know, kind of just existed. Currently in the U.S. 50% of the people living with HIV are over the age of 50, and by 2030, it's going to be 70%. So, you know, we need to start planning.

[Soojin Pak]

Yeah. I want to talk about your work and. And what are some specific challenges that you see, particularly in the LGBTQ community as they age? What are the things that come up again and again?

[Vince Crisostomo]

Well, for my generation, no, 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. A lot of them were in rent controlled apartments, got kicked out and evicted and had to move. So they have no community. A lot of people go back in the closet. That's why they don't access services from more traditional senior services. And there's just a lot of mistrust with LGBTQ folks around the medical and healthcare system. You know, many of our people avoided healthcare, so when they finally do need it, it's also challenging. And there's still a lot of homophobia. I mean, you can see it every day in the news. And so that is also discouraging.

[Soojin Pak]

I want to break down some of what Vince shared here. LGBTQ people have unique aging challenges, and not having family support is a huge factor. Over half of LGBTQ older adults report feeling isolated from others. And we know that loneliness comes with major health risks, like a significantly increased risk of dementia. Couple that with the challenges that come with accessing stigma free, affordable health care, and you can see that the obstacles are very real. Vince's work today at the San Francisco AIDS foundation is dedicated to making aging easier for LGBTQ people. And that commitment to caring for his community began decades ago. Let's rewind the clock a little bit. I mean, you've been caregiving for the majority of your life with friends and community members during, as you said, the HIV AIDS epidemic. Can you describe a little bit about what caregiving looked like for you then? Who you were caring for and what really was the environment that you were living in?

[Vince Crisostomo]

Well, initially it started like I worked at a club in New York, and I would notice that people didn't come back, and I would ask, hey, where's so and so? And they're like, oh, they're sick. They're not well. And so I remembered one time, like, for one person, I actually went to go visit them in the hospital, and I walked in and I couldn't find them. This was on 7th Avenue, and the halls were just. They were overrun with people. They didn't have enough beds. They didn't have enough rooms. And it was so traumatic to be like. I think it was like 24, 25. And to see that I didn't even find the person I was looking for. But shortly after that, I started volunteering. And so those were just hospital visits. And I remember my first client. I'd come in, I'd be all like, hi, how you doing? And build bouncy. And he's like, you are really annoying. I'm like, what? You know, I was kind of taken back. And he said, I'm not feeling well, and you are bouncing off the walls. I thought, you know, I thought that's what you did. So he taught me a lot. I am really grateful for that because I was kind of like, didn't know how to take that. But I sat down and listened to him, and I learned, listen, they come first, the people that you're caring about. And so those were hospital visits. And, you know, those usually didn't last very long because people did really die.

[Soojin Pak]

And what year was what. What year was this?

[Vince Crisostomo]

This could have been like 86, maybe.

[Soojin Pak]

That same year, Vince met someone named Jesse. As soon as he saw him, Vince says, he knew this would be an important man in his life. He had a crush on Jesse Far for a couple of years. Eventually, a mutual friend set them up on a date. By this time, Vince had recently learned he was HIV positive.

[Vince Crisostomo]

So we went to dinner, and I kept thinking, I need to tell this man that I have HIV. So I walked him to the corner of 6th Avenue and, I think, 4th street so that he'd have an easy out to get into the subway if he wanted to. So I said, jesse, there's something you need to know. And he's like, what's that? I said, well, before this goes any further, I want you to know that I have hiv. I tested HIV positive because. Is that it? I said, yeah, that's it. Because that's nothing. I have aids. And the next morning, you know, we made a second date. And the second date came up so excited this time, I think I went and bought a new outfit. I worked out. I did all these things that I guess you do when you're in your 20s and you think. And he didn't show up. And I was pissed. I was just like, you know, he just blew me off. And then I got a call, and it was Jesse. And he said, vince, I'm in the hospital. I was on my way to meet you. And I got sick, and so they had to take me. So I said, where are you? So I made it there, and I was just there for the next 10 days. And Jesse was scared because he said, vince, you know, I might die. And I said, if you die, you can die in my arms.

[Soojin Pak]

Together they moved to San Francisco into a beautiful old Victorian apartment near Dolores Park. Vince was juggling Jesse's care while also working a job to support the both of them. All the while, Jesse's health continued to decline.

[Vince Crisostomo]

And then one day he called me into his room and he said, I need you to quit your job, and I need you to take care of me. And I told him, you know, I don't know how to do that. I've never done that. His thing was just, well, just have faith and trust. And so I learned about food stamps, help making appointments. I had to learn to drive again. I had to give him his shots. I had to make sure he had his medication. I had to talk to the doctors. I had to clean him up if something happened. Sometimes he was in a coma. I had to, you know, run people back and forth to the airport. I, at one point, started to resent that. You know, I did not leave New York to become a caretaker. But then I realized that I had a choice. I could leave anytime I wanted to. And I remember I fell in love with Jesse again that day, and I never fell out. And that's just what kind of carried us through.

[Soojin Pak]

At first, Vince told me he was afraid to talk to Jesse about death. But eventually he came around. They went over Jesse's will, his banking information, and other important documents Vince would need after his passing. Near the end of Jesse's life, Vince spent many days and nights by his side in the hospital. One day, they had an unexpected visitor. Vince's mom. He hadn't seen her in over two years. Vince thinks his sister probably let her know what was going on, that Vince was with Jesse and they were at the hospital.

[Vince Crisostomo]

My mother showed up in this hospital room and kind of just pushed her way past me. And I just remember her looking at him, looking at Jesse making the sign of the cross and saying, you love him, don't you? I said, yes, I do. And then she looked at Jesse and said, you love him, don't you? And he said, yes, I do. And then she took both of her hands and she said, love you both. So while I lost Jesse, I got my family back.

[Soojin Pak]

Jesse died on October 6, 1991. They'd only been together for a couple of years, but before his passing, Vince and Jesse had registered as domestic partners at San Francisco City Hall. Vince says they were one of the first 50 same sex couples to do so. After losing Jesse, Vince revived his relationships with his parents, eventually leading to the day that he would have to care for them. But in the meantime, as the HIV AIDS epidemic raged on, Vince would experience even more loss as a caregiver for his community.

[Vince Crisostomo]

I can't tell you how many people I lost. I remember at one point I stopped counting.

[Soojin Pak]

That's when we come back. Let's be real. Without the black press, who's covering how black Americans are really treated in the healthcare system? Mainstream media barely scratches the surface, but word in black goes deep because lives depend on it. They're reporting the truth about medical racism, black maternal mortality, breast cancer in black women, mental health stigma, all of it. Want to stay informed and empowered? Subscribe to their weekly health newsletter and get the stories that actually put black health first. Go to wordinblack.com that's wordinblack.com and sign up. Because being informed is how we protect each other.

[C]

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[Soojin Pak]

In the years following his partner Jesse's death in 1991, Vince went on to provide more care for his community. He took over a volunteer program in San Francisco for people with HIV and aids.

[Vince Crisostomo]

So that was where I started getting paid to take care of my friends. And I remember summer of 1995, starting Memorial Day weekend, I was losing three friends a week. The week of July 27th, I think I lost five or six. And then on Labor Day I lost a friend on Friday, I lost a friend on Saturday, I lost a friend on Sunday. Monday was a holiday, but I think I lost a friend there too. But then I just took care of my friends. I mean, buried folks if they didn't have money, you know, created, had memorial services for them. So I mean, it's just, I've just always been very lucky and blessed. But almost all the work has been about taking Care of people, then, you know, started doing this job.

[Soojin Pak]

Yeah, it's a culmination of everything that you've done professionally, but also personally, you know, who you are, where you're sitting today. I just never really put together the parallel between someone living with HIV and having been through the 80s and 90s and what I mean, just decades of trauma. The parallel between that and growing older and taking care of your parents. Like, I never thought about those parallel tracks.

[Vince Crisostomo]

Right.

[Soojin Pak]

Like, yeah, so. So I guess my question, like, how has that experience, the HIV experience and all of that when you were younger, affected the way that you perceive growing older and in this role of taking care of your parents? Can you kind of talk about both of those things?

[Vince Crisostomo]

I had never thought I would be around to take care of my parents, so I kind of let them do all. Everybody else, make all the decisions. But then in 2017, December 2017, I get a phone call that my mom had fallen in their apartment. We got her up off the floor. We called 911. The paramedics came. She went to the hospital. A few days after that, they discharged her. She's the nursing facility that she's at now. So the first year was touch and go. And then it turned out my dad's health started to decline. One night he was visiting my mom, this was in March of 2018. And I noticed he was off. And I said, dad, I'm taking to the hospital. He wouldn't leave the facility. I had to call the police to come and talk to my dad and say, you need to leave the facilities past midnight. And I said, and just for good measure, can you tell him he needs to go to the hospital, too? The policeman was so. I mean, he was so gracious. And he told my dad, like, your son wants to take you to the hospital. So I did. And he found out he had a urinary tract infection. They treated him overnight. And then I got a call the next day that he'd had a heart attack and that I needed to get there because I didn't think he was going to make it. So I stayed with him for two days, just like I did with Jesse. And then I had to figure out what to do with him. And just by chance, I called the facility, and they had a bed. So I moved him right from that hospital into the facility, and that's where he remained.

[Soojin Pak]

I wanted to circle back a bit and ask, because I think for probably a lot of people listening, this deciding on how to care for your parents, a care plan, you know, do they Stay at home, do they go to a facility, all of that. It's such a daunting set of choices. How did you decide ultimately this was going to be the best for your parents?

[Vince Crisostomo]

The thing with this particular facility at the time is that a lot of the staff were Pacific Islanders or Filipino or Asian. And so they kind of treated my mom like they called her mom mom, which, you know, it's a cultural thing. It just felt. But then I also knew that I. I could have put my dad in a military. Like a military run recovery unit or. I actually tried to find some other spaces for him, but I. I think it was one of the nurses. One of the nurses or the CNAs, they told me, hey, there's a bed here. Maybe you can bring your dad. Because everybody was so touched that he loved my mom so much that he didn't want to leave. And so she said, why don't you just check with. So I did, and they had an opening. And I said, can I move my dad there? And they took him.

[Soojin Pak]

Vince developed a routine with his parents visiting three to four times a week. But even though they were well taken care of, they still ran into some issues. Once Vince's dad wandered off to Trader Joe's, apparently looking to buy a pizza. Another time, it was about showering for a while. Vince's dad flat out refused to take one.

[Vince Crisostomo]

And I mean, it went on like two weeks. This was during COVID the first part of COVID And I remember it was. It was a huge effort. I had to actually talk to him. Like, they had to come in and I had to talk him through the phone. I said, dad, you'll be happy. Everybody will be happier. Mom will be, you know, mom will quit yelling at you. You know, I promise you, as soon as I can get there, I will take you to McDonald's, you know, or we'll go for pepperoni pizza. You just gotta get into the shower. And I just can't imagine that. I mean, it had been like two or three weeks. I know he was incontinent. I'm just like my mother, who was kind of a clean freak. Must have just been livid. But he was sick. When he responded like, I'm not gonna do this. He was really stubborn. But that was, you know, our relationship, where he goes, you're my son and I will do this for you. I'm like, you're not just. But then I thought, okay, Vince, this is one of the times. Shut up. Just let him get in the shower. Let them throw the, you know, put the water on him, whatever it needs to happen. And then we finally got him to take a shower and one of the nurses called like, so we got him in the shower. He didn't like it, but he's clean. And, and then when he walked out, they said that they clapped.

[Soojin Pak]

Now that's a caregiving win. Vince mentioned this happened in the early days of COVID and it reminded me how tense those times were, especially in nursing homes. It was all over the headlines tonight. Nursing homes across the country scrambling to increase safety protocols. Nursing homes and other long term care facilities have been on lockdown since March.

[C]

More than 3,600 deaths from COVID 19 in this country are believed to be.

[Soojin Pak]

Linked with nursing homes and assisted living centers. Remember that nursing homes were very much the front lines against this new virus.

[Vince Crisostomo]

I was really aware that the chances of us getting through this without them getting it were, were really slim, that most likely they would, they would get it. And so I just made every day count. I mean, I called in the morning, I called in midday, I called in the evening to say good night. And that was what we had to, we had to go with. So it was about 6 in the morning and I saw my phone lit up and I saw the name of the facility on the phone and, oh, this is that phone call that I had been dreading and called. So it was about 6:45, 6:55. I called, talked to them, asked how he was doing. They said he's fine, that he'd been moved to quarantine, asked about my mom, and they said that she was fine, she had tested negative. And then I just waited. Both of them had phones, so I was actually able to talk to both of them. And my mom moved into quarantine with my dad. In the meantime, I'm seeing all these images of COVID and what's happening. And it looked just like the hospitals did in 1985, 86 when I was doing my hospital visit. Hesitations. And it was just, it was really reliving all those traumas. So if I had complex trauma before in ptsd, it's even more complex because having gone through the second pandemic, I mean, it was such an intense time because I felt the post traumatic stress. Like all the traumas I lived through in the 20s. Like, you know, I remember going to the hospital on 7th Avenue and seeing they had not enough beds. And so all these people were in gurneys and stuff in the hallways. I didn't even find the person. And I really didn't want that from my Parents. And so I just kind of had to accept that they were in the best place.

[Soojin Pak]

While Vince's parents were in quarantine, he checked in with them several times a day. In the meantime, he was waiting, hoping for the news that they were in the clear and could move out of isolation.

[Vince Crisostomo]

On September 14, I woke up in the morning. I had a conference to go to that I was presenting. It was a virtual soul. And I called them like I normally did, and I talked to my dad, and my dad said, you know, hi, son. You know, I told him I'd been promoted, and he told me he was proud of me and that we were proud of me and that, remember that. That we love you. I said, okay, great. And they're gonna take you to your next room later, and I'll check in with you this afternoon. So I'm just about to do my keynote at the conference. It sounds so dramatic, but I'm really supposed to do a keynote. And I see the phone light up, and it's the facility. Like, oh, they're just telling my dad's getting out of quarantine. It lights up again. And I thought, oh, okay, that's interesting. They're calling me back. Maybe, you know, whatever. It lit up a third time. And, you know, this wasn't aging like a traditional aging conference. And so the person told me, vince, I think you need to take this call. And I said, okay. So I took it, and they told me that my dad had gotten my mom into. Like, they opened. They were describing it. They opened the quarantine curtain or whatever, the door, and my dad was pushing my mom through, and he goes, hello, Good Morning America. We're back. And they watched him put my mom. And my mom described this. He put her in bed. Bed in the new bed. And he was looking at her, and then all of a sudden, his eyes rolled and he collapsed. And apparently they found him on the floor about 10 minutes after that. And the last, very last thing I saw of my dad was he was in this glass behind this glass wall, hooked up to all these machines. It looked like a piece of science fiction, but he was at peace.

[Soojin Pak]

Vince's dad died on September 16, 2021, the day before his 87th birthday. When we come back, Vince finds new ways of bonding with his mom, reconciling the mother who disowned him with the mother he cares for today.

[D]

Hello, I'm Joelle Brevel, medical mythbuster and host of the Dose, a health policy podcast from the Commonwealth Fund. Each season, I sit down with a leading health policy expert and medical professionals to have real conversations about the issues that keep them up at night. We talk about breakthroughs in their research and their new ideas to make our health care system work better for all Americans. This idea of equity needs to be.

[Vince Crisostomo]

Taken up by everyone.

[D]

And wherever you are in your work, whatever sector that you're in, we need to have conversations about what tomorrow looks like. I hope you'll check out the Dose and enjoy listening to our interviews. You can find us at thedose show or by searching your podcast app for the Dose from the Commonwealth Fund.

[E]

Hi everyone, I'm David Duchovny. Join me on my podcast Fail Better, where we use failure as a lens to reflect on the past and analyze the current moment. I speak with makers and and performers like Rob Lowe, Rosie o' Donnell, and Kenya Barris, as well as thinkers like Kara Swisher and Nate Silver to understand how both personal setbacks and larger forces impact our world. Listen to Fail Better wherever you get your podcasts.

[Soojin Pak]

After his dad died, Vince was at a low point. He described it as walking in beauty and grief simultaneously. Time has helped though. Vince's mom still lives in the same nursing facility today and he visits her regularly. I wanted to know what those visits were like. What does care look like for your mom today? Like, how do you see sort of spending time with her? How often do you see her? What is the quality of your time with her? Just curious about your relationship with her today.

[Vince Crisostomo]

I'm only able to really visit about once a week right now. Our visits are so sweet. I mean, I just saw her Sunday night and we were talking and, you know, a couple weeks ago there was a fire in the facility and so she was pretty traumatized by that and it triggered her dementia. And I saw her the next morning and she was a little, you know, not quite herself. We had the same conversation like almost every two minutes, which is something that happens with dementia. But when I went to back to see her on Saturday, she it was the same thing. But between it, she would reach out and grab my arm and say, vince, I love you. I love you, Vince. So it's almost like she's saying goodbye to me, but she still remembers me. And she kind of brings me back to this place. Like, you know what? This is what matters in this moment. You remember me. I'm talking to you. You're telling me you love me and you're well taken care of. That whatever you know, you are well taken care of and you will be taken care of.

[Soojin Pak]

A Big reason these visits are so sweet is that Vin says he's made peace with his mom since she disowned him all those years ago.

[Vince Crisostomo]

There's certain rituals like Mother's Day, like, you know, all the cards say you're the best mother ever was. You've always been there for me. I'm like, that's not true. And I would look at that like, do I really want to spend $7 on a card that says this? But now I buy those cards and it's like you were there for me and you are there for me now and you are helping me to still become the man that you know, I'm destined to be. So, you know, yeah. If she, if she hadn't done what she has done, I wouldn't be who I am.

[Soojin Pak]

I keep thinking about this idea of caring for a parent who wasn't always there to care for you. It's a story we've heard a lot from family caregivers in the making of this season. Ideally, we could all make peace with a our parents when caregiving for them like Vince has. But that's just not the reality for so many. As we close, I want to share one of those stories. It comes From Teresa, a 36 year old single mom caring for her 79 year old mother with dementia.

[F]

It's really, really tough. My mother and I never had a great relationship growing up. My mom was pretty much abusive. She was an abusive parent and it's very, very difficult now to take care of somebody who I know would never have done the same for me. It's just very hard. And it's also very difficult watching my 15 year old watch this happen. My daughter wants us to move. She wants us to put, you know, my mother in law care facility. But I just cannot afford that right now and neither can my mother. And I also work a full time job. I'm a preschool teacher. And the juggling of all these things is just overwhelming to say the least.

[Soojin Pak]

If you're like Teresa and navigating a complex relationship, you're not alone. Over half of caregivers say their role makes it difficult to look after their own mental health. Caregivers need more support, full stop. One thing that's been a learning curve for me is this concept of developing healthy boundaries. It's not something I even thought of or understood till my 40s, but it's understanding that saying no or not today isn't the same as I don't care or I don't love you. It's subtle, but it can have a profound shift on how caregivers care for their loved ones and themselves. We can't do it all on our own, though. If I've learned anything from Vince's story, it's that 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.

[C]

Foreign.

[Soojin Pak]

There'S more Uncared for with Lemonade Premium subscribers get exclusive access to bonus content like unaired interview clips from caregivers across the country. Subscribe now in Apple Podcasts, Uncared for is a production of Lemonada Media. I'm your host, Sujin Pak. Muna Danish is our supervising producer. Lisa Fu and Hannah Boomershein are our producers. Our mix is by Bobby Woody. Music is by Andrea Christensdotter. Our associate producer is Isaura Asevez. Jackie DanZiger is our VP of Narrative Content. Executive producers are Jessica Cordova Kramer and Stephanie Wittleswax. This season of Uncared for is presented by the Commonwealth Fund, a nonprofit foundation making grants to promote an equitable, high performing healthcare system. Help others find our show by leaving us a rating and writing a review. You can follow me on Instagram at Sujinpah and Lemonada at Lemonada Media across all social platforms. Follow Uncared for wherever you get your podcasts and listen. Ad free on Amazon Music with your prime membership. Thanks so much for listening. See you next week.