Living Long Enough to Be a Caregiver
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Hi, I'm Megan, and I've got a new podcast I think you're going to love. It's called Confessions of a Female Founder, a show where I chat with female entrepreneurs and friends about the sleepless nights, the lessons learned, and the laser focus that got them to where they are today. And through it all, I'm building a business of my own and getting all sorts of practical advice along the way that I'm so excited to share with you.

Confessions of a Female Founder is out now. Listen wherever you get your podcasts. This show is presented by the Commonwealth Fund, a nonprofit foundation whose mission is to promote a high-performing, equitable healthcare system.

The Commonwealth Fund supports research to improve health care policy and practice and has a long history of exploring what the U.S. can learn from the best health care around the world to do better here at home, especially for people of color, people with low income, and those who are uninsured. To learn more, visit CommonwealthFund.org. 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. 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.

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

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, Sujan 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 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.

So I had 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 then 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. 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? Well, 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. 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.

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.

Uh, 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? 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 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 and I'd be all like, hi, how are you doing? And Bill 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'm really grateful for that. So that's kind of like, didn't know how to take that. But I sat down and listened to him. I learned to 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. And what year was this? This could have been like 86, maybe.

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. 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 in

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. He goes, is that it? I said, yeah, that's it. He goes, that's nothing. I have AIDS. And the next morning, you know, we made a second date. And...

The second date 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 said, Vince, you know, I might die. And I said, if you die, you can die in my arms.

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. 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 Jessica and that day I never fell out. And that's just what kind of carried us through.

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 Jessie and they were at the hospital. My mother showed up in this hospital room and kind of just pushed her way past me and

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?" And 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 our hands and she said, "I love you both." So while I lost Jesse, I got my family back. 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. I can't tell you how many people I lost. I remember at one point, I stopped counting. That's when we come back.

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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. So that was where I started getting paid to take care of my friends. And I remember December 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 friends.

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 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. And then, you know, started doing this job. Yeah, it's a culmination of everything that you've done professionally, but also professionally.

you know, who you are and where you're sitting today. I just never really put together the parallel between, you know,

someone living with HIV and having been through the eighties and nineties 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, 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 trauma?

growing older and in this role of taking care of your parents. Can you kind of talk about both of those things? 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 and

She went to the hospital. A few days after that, they discharged her. She's 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 I said, dad, I'm taking you 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 facility. It's 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. I want to circle back a bit and ask that.

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 things.

How did you decide ultimately this was going to be the best for your parents? 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, which, you know, it's a cultural thing. It just felt. But then I also knew that I could have put my dad in a military, like a military position.

run recovery unit or I actually tried to find some other spaces for him but I think it was one of the nurses one of the nurses or the CNAs there 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 the office so I did and they had an opening and I said can I move my dad there and they took him 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. And I mean, it went on like two weeks. This was during 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 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 got to get into the shower and um

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 put his mind 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 documents. This is one of those times, shut up. Just let him get in the shower. Let them put the water on him. Whatever needs to happen. And then we finally got him to take a shower. And one of the nurses called. So we got him in the shower. He didn't like it, but he's clean. And then when he walked out, they said that they clapped.

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. More than 3,600 deaths from COVID-19 in this country are believed to be linked with nursing homes and assisted living centers. Remember that? Nursing homes were very much the front lines against this new virus.

I was really aware that the chances of us getting through this without them getting it were really slim, that most likely 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 goodnight. And that was what 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 I thought, "Oh, this is that phone call that I have been dreading." 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. I asked about my mom and they said that, you know, 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. And it looked just like the hospitals did in 1985, 86, when I was doing my hospital visitations.

And it was really reliving all those traumas. So if I had complex trauma before and 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 for my parents. And so I just kind of had to accept that they were in the best place.

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. On September 14th, I woke up in the morning. I had a conference to go to that I was presenting. It was a virtual. And I called them like I normally did. And I talked to my dad. And my dad said, you know, hi, son. I told him I'd been promoted.

And he told me he was proud of me and that we were proud of me and to remember 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 literally supposed to do a keynote and I see the phone light up and it's the facility. I'm 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 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, um,

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, 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. Vince's dad died on September 16th, 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. Hello, I'm Joel Brevelle, medical myth buster 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 taken up by everyone. 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. An Australian hiker travels to the American West to walk a wilderness trail. Wasn't afraid to be out on his own. But Eric Robinson vanished in the High Uinta Mountains. I remember thinking, Eric, what were you thinking, mate?

I'm Dave Colley. Join me on my podcast, Uinta Triangle, where I travel the world to answer the question, what happened to Eric Robinson? Follow Uinta Triangle, that's U-I-N-T-A Triangle, on Apple Podcasts or wherever you listen. 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.

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 back to see her on Saturday, it was the same thing. But between that, 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.

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. 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 I

that, you know, I'm destined to be. So, you know, yeah, if she hadn't done what she has done, I wouldn't be who I am.

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

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 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...

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.

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, Sujan Pak. Muna Danish is our supervising producer. Lisa Fu and Hannah Boomerschein are our producers. Our mix is by Bobby Woody. Music is by Andrea, Kristen's daughter.

Our associate producer is Isaura Aceves. Jackie Danziger is our VP of narrative content. Executive producers are Jessica Cordova-Kramer and Stephanie Whittleswax. 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 Sujin Park 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.

This show is presented by the Commonwealth Fund, a nonprofit foundation whose mission is to promote a high-performing, equitable healthcare system.

The Commonwealth Fund supports research to improve health care policy and practice and has a long history of exploring what the U.S. can learn from the best health care around the world to do better here at home, especially for people of color, people with low income, and those who are uninsured. To learn more, visit CommonwealthFund.org.

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I'm Gloria Rivera, and this is No One is Coming to Save Us. This season, we're demanding a child care system that actually works for kids, parents, and educators. We mean free birth to five, full day, nearby, easy to apply. No One is Coming to Save Us, season five from Lemonada Media, out now.