Living Long Enough to Be a Caregiver

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As someone living with HIV, Vince Crisostomo couldn’t imagine aging past thirty, let alone getting old enough to care for his parents. But when the time came to look after them, Vince embraced it, especially after years of caregiving for his community during the HIV/AIDS epidemic. He helped his parents move to an assisted living center and managed their care, this time during a different global health crisis: COVID-19.

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To follow along with a transcript, go to shortly after the air date.



News 3, News 2, Theresa, SuChin Pak, News, Vince Crisostomo

Vince Crisostomo  00:01

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.


SuChin Pak  01:35

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  02:00

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


SuChin Pak  02:04

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


Vince Crisostomo  02:18

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.


SuChin Pak  02:27

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 SuChin Pak. These days, Vince is the 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 into. 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  03:35

So I have been living with HIV since 1987. And initially, finding out that you were living with HIV was a death sentence. If I was taught, I wouldn’t live to see 30 and I’m now 63 Um, 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’m or there’s a local gay newspaper called The Bay Area reporter there was a big deal when they had no […]. 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 US 50% of the people that 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.


SuChin Pak  04:37

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  04:56

Well, for my generation, no, we didn’t have families. There’s still a lot of internalize 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 health care. So when they finally do need it, it’s 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.


SuChin Pak  05:45

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 than who you were caring for and what really was the environment that you were living in?


Vince Crisostomo  06:59

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 remember 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 Seventh Avenue. And the halls were just they were overrun with people. They didn’t have enough beds, they didn’t have the 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 I started volunteering. And so those were just hospital visits. And I remember my first client, I 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 aback. And he said, I’m not feeling well, and you’re bouncing off the walls, I thought, I thought that’s what you did. So he taught me a lot. I am really grateful for that last 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.


SuChin Pak  08:17

And what year was, what year was this?


Vince Crisostomo  08:19

This could have been like 86, maybe.


SuChin Pak  08:26

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 from afar 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  08:45

So we went to dinner, and I could think I need to tell this man that I have HIV. So I walked him to the corner of Sixth Avenue and I think Fourth Street so that you’d have an easy out to get into the same subway if he wanted to. So I suggest you as some of you need to know when 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 it’s 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 day came, I was 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’s been so you know, I might die. And I said, so if you die, you can die in my arms.


SuChin Pak  10:08

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


Vince Crisostomo  10:24

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. This 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 come 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 fall. And that’s just what kind of carried us through.


SuChin Pak  11:30

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  12:06

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


SuChin Pak  12:31

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  13:11

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


SuChin Pak  13:18

That’s when we come back.


SuChin Pak  13:53

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  15:06

So that was where I started getting paid to take care of my friends. And I remember summer of 1985, starting Memorial Day weekend, I was losing three friends a week, the week of July 27, 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, credit 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.


SuChin Pak  15:49

Yeah, it’s it’s a combination of, 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, right, like, 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  16:45

I had never thought I wouldn’t 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 call 911. The paramedics came, she went to the hospital, few days after that they discharged which is in the nursing facility that she’s at now. And 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 sit down, 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 just for good measure can tell him he needs to go to the hospital to the policeman was so I mean, he was so gracious. And he told me that like your son was sick 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.


SuChin Pak  18:15

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, what 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  18:43

The thing with this particular facility at the time is that a lot of the staff were Pacific Islanders are Filipino or Asian. And so they kind of treated my mom like they called her mom, which you know, it’s a cultural thing it just felt. But then I also knew that I could 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 think it was one of the nurses more than nurses or the CNA said to me, hey, there’s a bed here. Maybe you can bring your dad because everybody is 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 the office. So I did and they had an opening and I’m trying to move my dad there and they took him.


SuChin Pak  19:34

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 refuse to take one.


Vince Crisostomo  19:56

And I mean it went on like two weeks this was drink Coke the first part of COVID and I remember it was, it was a huge effort, I had to actually talk to him to come in, and I had to talk him through the thumb. I said, Dad, you will 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 is kind of a clean freak. Must’ve just been livid. But he was sick when he smiled to like, I’m not going to 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 without Gibbons 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.


SuChin Pak  21:20

Now that’s a caregiving when 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.


News  21:32

Tonight, nursing homes across the country scrambling to increase safety protocols.


News 2  21:36

Nursing homes and other long term care facilities have been on lockdown since March.


News 3  21:41

More than 3600 deaths from COVID 19 In this country, are believed to be linked with nursing homes and assisted living centers.


SuChin Pak  21:50

Remember that? Nursing homes were very much the frontlines against this new virus.


Vince Crisostomo  21:55

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 everyday count. I mean, I called in the morning, I called them 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 six in the morning, and I saw my phone lit up and I saw the name of the facility on the phone. And this is that phone call that I had been dreading and called up. So it’s about 6:45, 6:55. I called talk to them asked how he was doing, they said he’s fine. That he had been moved to quarantine last about my mom. And they said that no, she was fine. She had tested negative. And then I just waited. You know, both of them had phones. So I was actually able to talk to both of them. And you know, my mom moved into quarantine with my dad. In the meantime, I’m seeing all these images of COVID. And what’s happening that look just like the hospitals did in 1985-86 when I was doing my hospital visitations and it was just it was really reliving all those traumas. So if I had complex trauma before 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 Seventh 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.


SuChin Pak  24:01

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  24:11

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 my being promoted. And he told me he was proud of me and that we were proud of me and that to remember that that we love you. And I said okay, great. And they’re going to 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 in live supposed to do a keynote and I see the phone light up and it’s the facility. Like God, they’re just telling my dad’s getting out of quarantine. It lights up again, oh, okay, that’s interesting. They’re calling me back. You know, whatever. It led up a third time and, you know, this was an 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 the open house. 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 jim put my mom and my mom described this, he put her in 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 free lesson I saw 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.


SuChin Pak  26:10

Vince’s dad died on September 16 2021, the day before his 87th birthday.


SuChin Pak  26:23

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.


SuChin Pak  28:08

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’s 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  28:43

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 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 back here on Saturday, she is the same thing. But between us she would reach out and grab my arm and say Vince, I love you. I love you, Vince. And 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.


SuChin Pak  29:44

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


Vince Crisostomo  29:52

There’s certain rituals like Mother’s Day, like you know all the cards a year the […] you’ve always been there from I’m like that’s not true. Oh 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 are 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.


SuChin Pak  30:25

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 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 Theresa, a 36 year old single mom caring for her 79 year old mother with dementia.


Theresa  30:53

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 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 a 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.


SuChin Pak  31:50

If you’re like Theresa 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.


CREDITS  32:52

There’s more Uncared For with Lemonada 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 SuChin Pak, Muna Danish is our supervising producer, Lisa Phu and Hannah Boomershine our producers. Our mix is by Ivan Kuraev. Music is by Andrea Kristinsdóttir. Our associate producer is […]. Jackie Danziger is our VP of narrative content. Executive Producers are Jessica Cordova Kramer and Stephanie Whittles Wachs. This season of Uncared For is presented by the Commonwealth Fund, a nonprofit foundation making grants to promote an equitable, high performing health care system. Help others find our show by leaving us a rating and writing a review. You can follow me on Instagram at @SuChinPak and Lemonada @LemonadaMedia 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.

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