Tight Knit

Ep. 5: Family Photo

Episode Summary

We meet two women who moved across the country to look after their respective sets of aging parents, even though their elders, who came to the U.S. from India, had trouble accepting them: both individually, when they came out as lesbians, and as a married couple.

Episode Transcription

Family Photo

Before we begin, a quick note. This series was created *before* the COVID-19 pandemic. You’ll hear an update on the caregivers and families you’re about to meet at the end of the episode.

 

Ashley Milne-Tyte: Spending time with an aging parent can be rewarding - a time to strengthen bonds, to give back to the person who raised you. And it can be a time of reckoning with someone who never understood or accepted you.Family rifts can begin and deepen because of politics, or religion. They can also divide families when a child comes out as LGBTQ-- that’s lesbian, gay, bisexual, transgender or queer. And so adult children who are LGBTQ -and who have stepped in to look after a parent--may be caring for someone who has denied their identity.

 

Vega Subramaniam:  She was just horrified and mortified and angry and upset and grief stricken.

 

AM-T: How do you care for a parent who’s rejected everything you are? 

Welcome to Tight Knit, a podcast about the many ways people are working to build stronger relationships and communities.

I’m your host, Ashley Milne-Tyte. In this episode, we meet a couple--two daughters -- who went to look after their respective sets of parents. As they were doing this, all four in-laws had to come to a new understanding about the women their children had become. 

 

AM-T: Before we get to this couple’s story, you should meet Susanne Weessies--from the Pride Center of Western New York,  an advocacy organization based in Buffalo. She says LGBTQ caregivers could go elsewhere for support, but they come to the Pride Center because they want to be in a place where people understand their specific situation.

 

SUZANNE: Where no one’s gonna make an assumption, no one’s going to say, like, ‘well tell me about your husband.’ We don’t use language like that because we don’t assume that every woman has a husband. So we ask about, who’s your family, who do you live with, are you partnered?

 

AM-T: WhenSuzanne was the Pride Center’s caregiver wellness coordinator, she was meeting with caregivers, hearing their stories, helping connect them to services and providing other support. And Suzanne says LBGTQ folks in rural areas are far likelier to be closeted than those in big cities.  She says when she does outreach outside of urban areas she’s careful how she markets caregiver education events. For starters, she doesn’t use terms like LGBTQ.

 

SUZANNE: We really take the language away because we know that if someone wants to attend this program and we market it as an LGBTQ- focused either program, or provider who's putting it on, people won't go because by signing up they're outing themselves in some capacity, you know, so they're not going to attend anything that has certain language, or certain like images on the marketing materials because then their neighbors will say, well, why are you going to that? 

 

AM-T: So they keep the language neutral.

 

SUZANNE: I mean, we don't ever hide that it’s the Pride Center putting it on. But we are aware that, you know, for people's comfort and safety and ability to access the services without outing themselves or without any questions about why they're, why would they get their help from us and not from another entity, we really try to make it less obvious. And that's kind of a bummer to have to do, but we want to be aware of the communities we're working in and then maybe like slowly, slowly integrate them into the idea that, you know, that they can attend programs put on by the Pride Center, whether they're LGBTQ identifying or not.

 

AM-T: She says while the organization is happy to serve anyone who comes, LGBTQ caregivers often run into issues other caregivers do not. Mostly these relate to family relationships. She says things are changing with a new generation and their parents, but today’s middle-agedLGBTQ people often have complicated relationships with their elders. 

 

AM-T: This is Mala Nagarajan and her mother, Picha--speaking in Picha’s native language, Tamil. They’re neighbors: Mala lives right across the hall with her wife, Vega Subramaniam. The couple are in their 50s now and have been together for two decades. Picha has her own apartment, butneeds a lot of help with daily living. She’s 83 and has severe arthritis and diabetes.

 

AM-T: When Mala’s father was alive, they took care of him as well. Each of their families comes from the same religious and cultural community in southern India, though Mala and Vega were both raised in the US. For years they lived happily on the west coast. Moving east was hard for them. They now live in Maryland. Parent-care, or the possibility of it, was part of an understanding the two of them had always had. Vega says back in 1998 when she and Mala got together, Mala tested her with a list of questions. 

 

VEGA: One of the questions she asked was, so if my parents want to move in with me, I want to make sure that we have a space in our home where they can live. So are you okay with that? And my response was, ‘Oh, I'm okay with that. As long as there's space for my parents too.’ 

 

AM-T: But it was a theoretical discussion back then. Because at the time, each woman’s relationship with her parents was rocky. Neither set of parents was thrilled when their daughters came out to them as gay. In each case, one parent was more resistant than the other. Vega didn’t tell her parents until she was 31. And remember, both sets of parents are south Indian, from the state of Tamil Nadu and from the same conservative community.

 

VEGA: My mother's response was, I mean, she was just horrified and mortified and angry and upset and grief stricken.

 

AM-T: She cried. She raged. She was in denial. 

 

VEGA: Like, you know, ‘You're my daughter. That can't be true. What are you talking about? You must have been brainwashed. That doesn't make any sense. What do you mean? That doesn't exist in our community, of course you're not, I should've gotten you married off when you were in college.’

 

AM-T: Vega’s father, on the other hand, had a totally different reaction. 

 

VEGA: He basically said, ‘Wow, so you've known this about yourself for many, many years and you didn't tell me? You didn't feel like you were able to tell me? So I don't want to be the kind of father that his daughter cannot tell him something so important. So I want to figure out what I've been doing wrong and I want to change so that I can be the kind of father that a daughter can say anything to.’ And he was super supportive.

 

AM-T: When Vega and Mala got married in 2002, Vega’s father was there. Her mom stayed home. Still, Vega wanted to keep up the relationship with her mother. Both she and Mala hoped to win her over. But she says it was tough every time they flew back to visit her parents. And Vega wasn’t going to stay at her parents’ without Mala. Much to her mother’s displeasure.

 

VEGA: You could just feel the iciness, it was palpable how cold she was, and she just barely tolerated Mala in the house. And, um, it was very uncomfortable. It was very awkward. But you know, we dealt.

 

AM-T: Even though Vega resented this treatment of her wife, and sometimes despaired of her relationship with her mom…she still loved her parents. Mala felt the same way about her own parents. Her dad wouldn’t accept that she was a lesbian. Like Vega’s mom, he’d skipped their wedding. But even though the relationships were strained, each woman noticed more and more that their parents needed them. Here’s Vega again. 

 

VEGA: Over the course of the mid two-thousands, every time we came to visit our parents on the East coast, they were just, we were just experiencing them getting older, frailer, needing more support. All of their children, all of our siblings are on the West coast. We were on the West coast. It felt harder every time we flew back to leave them alone for another year.

 

AM-T: Finally, in 2009, more than ten years into Mala and Vega’s relationship, something shifted. Vega’s mother began to thaw. Vega and Mala had always helped their parents with household things - staining a table, putting up a shelf, showing them how to order online. That year Vega’s mom had a big job on her hands. Here’s Mala:

 

MALA: She needed some help cleaning up her kitchen cause there's, she's an amazing cook. Like she cooks all the time. 

 

AM-T: Vega’s mom makes lots of traditional south Indian dishes like dahi vada - they’re deep fried lentil balls with a yogurt topping; idli - a fluffy steamed rice cake you munch on for breakfast, with a spicy broth—and different kinds of dosas. And those are just a few of her specialties. She spends hours in the kitchen. But years of preparing delectable meals every day had resulted in a light, greasy sheen over pretty much everything in the room. So Mala says she and Vega rolled up their sleeves....

 

MALA: And we spent a whole weekend scrubbing like just every inch of her kitchen to get as much of the grease off as possible. And I think she saw how much we both were working and I feel like her heart melted, like whatever remaining discomfort or, I mean she still has some discomfort, but whatever remaining coldness she had in her heart just really evaporated.

 

AM-T: Mala had been trying to woo her mother-in-law for years - often through their joint love of cooking. Mala really wanted to learn from Vega’s mom. For so long, every offer of help in the kitchen had been rebuffed. 

 

MALA: When I first was asking her, she's like, ‘no, I don't need any help. I don't need any help.’ And then at some point she was like, ‘so this is the way you do this, you know, this is how you make idlis, and this is how you make…’

 

VEGA: And I would go even a step further and say it went from a begrudging allowance of Mala to be in the kitchen while she cooked to proactively seeking Mala out and being like, Hey, Mala, I'm going to make this particular dish. Do you want to come watch me?

 

AM-T: This was a huge step. For years, Vega’s mom couldn’t even sayMala’s name--now she was inviting Mala into her domain. In the end, it was Mala’s persistent curiosity and kindness that won over her mother-in-law.Today, Vega says the two of them are close to her parents. In fact her parents just moved from their longtime home to an apartment less than a half hour drive from Vega and Mala. Vega says they’re in their eighties now but still active and in good health. Still, when the time comes, she and Mala are ready to look after them.

 

AM-T:  As the relationship with Vega’s mother began to improve, the pair still faced the disapproval of Mala’s father. Mala is the baby of her family. She has two older sisters, and she says she always felt like her dad’s favorite. But he had no qualms telling her that being gay was unacceptable. 

 

MALA: He continued to express he didn’t believe that this was natural. He wouldn’t say he thought I was failing the family or failing society, but we’d have lots of philosophical arguments...

 

AM-T: Mala’s father, Raj, told Mala it was her duty to marry and have children-no matter what she might feel for other women. He was a pillar of his local south Indian community. He was active at the Hindu temple. He was a religious man. Vega says...

 

VEGA: There was nothing that Mala could say or that he could learn that was gonna surpass his deep fundamental belief that it was wrong on religious grounds. 

 

AM-T:  Still, he always kept up his relationship with Mala. And while he was courteous to Vega, he was cool and distant. He would never acknowledge her as Mala’s wife. Then, in 2012, Raj got sick. By this time Mala and Vega were living nearby, in the Washington DC area. After being in pain for months, in 2013 he was finally diagnosed with both lung disease and stage 4 cancer. This changed everything, because Raj had been looking after his wife for years. Mala’s mom, Picha, had gone deaf at age 40. That had isolated her hugely. Raj was her interpreter. She had never learned to drive, so Raj took her everywhere. Her arthritis had been so bad for so long that he did all the cooking and housework. Now, Vega says, with his diagnosis, everything was falling apart.

 

VEGA: He couldn't take care of things around the house. So Mala was finding herself going to their house almost on a daily basis, if not on a daily basis. Her father was in and out of the hospital and/or rehab and at some point, we just both looked at each other and were like, we're going to have to move in, aren't we? And in the meantime her father had been pleading with Mala, like, I can't do it. I please move in with us. We'll do any, you know, whatever you need to have happen, we will do it so that you can move in with us. I need you. 

 

AM-T: So they did. But it was traumatic for Mala. They were back in her childhood bedroom, where as a teenager she’d wrestled so much with her sexuality, she’d come close to taking her own life. Then there was her parents’ relationship. Mala say theirs was a difficult marriage. 

 

MALA: So there were lots of times where I got in between my dad and mom would be in fights. It was like they reverted back to the way they were when I was five years old and I would get in between the two of them so that they wouldn't so that my dad wouldn't hit her, or like it was...my mom was scared of him. 

 

AM-T: Mala wanted to protect her mother. 

 

MALA: When my dad got sick, like I, it, I really, I keep telling my, my mom this, it's like I really was moving in for her.

 

AM-T: She says yes, she took care of her father gladly. She did things for him she’d never have done if she hadn’t loved him deeply. 

 

MALA: But there was no one for my mom. Like my dad had a community of friends, a religious community of friends, people that came to visit him, people that he could talk with on the phone. If I had not been there, somebody in the community would have picked up to help my dad. But there were very few people that could care for my mom or communicate with my mom in ways that she was able to receive it. 

 

AM-T: Remember, her mother Picha is deaf and has been since Mala was seven years old. She doesn’t speak much English and she can be hard to understand when she does. She doesn’t have close friends. And her relationship with her husband was rough. Mala thought, if one of her three daughters isn’t here to help her, she could die too. Vega says that dedication has paid off. 

 

VEGA: It would be fair to say...I think her mom says it and I think maybe even her sisters say it - that her mom is alive today because Mala moved in. 

 

AM-T:  As Mala supported her mom, she was chief caregiver for her dad. He needed an advocate in the hospital partly because in his pain, his fluent English was becoming a lot harder to comprehend. His cancer and lung disease were getting worse. At home she took over the cooking and housework and helped with their finances. She arranged for wheelchairs and oxygen tanks; she helped her dad in the bathroom. 

 

MALA: Like I'd have to give him an enema and things like that. Those are kind of, it's like you just dig in, you just get into it, right? Whatever modesty we had before that had to happen, like it was gone at that point. And, so in some ways, our relationship was very intimate and he trusted me to do things and to take care of him. And then [on] other ways, we were just arguing all the time, like he was trying to get my mom to do more things and I'm like, Mom is not in any shape to do things. So like...she's already fallen three times.

 

AM-T: Did he appreciate your care... on the good days, like I know you had these arguments, but was he grateful to you for being there? 

 

MALA: Oh my God, so much. He was so grateful. Like he'd always say that he didn't know how he would have gotten through this without me. And then he would also acknowledge, he was like, I see how much Vega helps you. And even if I don't agree with the relationship, I see how much of a support she's been for you. 

 

AM-T: But he never spoke those words to Vega. She still felt she didn’t fit in in this house that belonged to her father-in-law, who was polite to her, but wouldn’t acknowledge her relationship with Mala. She used to go with Mala to see her dad when he was in the hospital. She says Raj seemed grateful to have her there, as another person who could take in what the doctor was saying. But when it came time to introduce her...

 

VEGA: Mala and he would race to be the first person. So he would say, this is my daughter Mala. And then he would say, and this is... and Mala would say ‘my wife’ and he would say ‘her friend.’ [Laughs] And so it was weird. It was a weird, weird time. I'm very glad we were there. I would not take it back for a second. I watched Mala have a chance to be so intimately involved with this person and recreate a new relationship with this person. That's sacred. Like there, there's no way I would not do that again, but I can't say that it was easy.

 

AM-T: Late in 2013, doctors told Raj’s family there was nothing more they could do. He was put on hospice care. His older daughters flew in to be with him. One day, says Vega, everyone gathered in his room.

 

VEGA: They dressed him up in a nice sweater, like they dressed them up to look nice and they all wore nice clothes. They wanted to take like kind of last pictures with the family. So since I was there, I was kind of like the designated photographer…

 

AM-T: So she takes a photo of each family member with Raj, with and without the others - there are lots of iterations. And when she’s finally done, she’s about to put the camera down...

 

VEGA: And Raj, in this weakened, fragile, barely able to talk state, he was like, ‘I would also like a photo with Vega.’ [Sighs] And that's still, again, that still brings tears to my eyes...cause it was the first time ever that he recognized me as a family member.

 

AM-T: Raj died a week later. 

Vega and Mala stepped up to take care of their parents because they wanted to. They weren’t pushed into it by brothers and sisters. But Suzanne Weessies, of the Pride Center of Western New York,says in a family with more than one child, the LGBTQ sibling is often designated as the caregiver by the others. 

 

SUZANNE WEESSIES: Because the straight siblings assume that the gay or lesbian sibling, because they are less likely to have children, I'm less likely to have a more ‘traditional’ life, that they probably have more time, fewer obligations in their personal life. You know, there's a devaluing of their time and of their life. So they end up being put in the position to be the primary caregiver. But they are often caring for a parent who may have been unwelcoming to them in their life.

 

AM-T: Family dynamics are one challenge. Money can be another. Taking care of somebody can get really expensive. A study by the Center for American Progress found that LGBTQ people tend to earn less than their heterosexual co-workers. 

 

SUZANNE: Because they're less likely to be promoted or considered for more prominent or higher earning positions just because of discrimination that still exists in the workplace.

 

AM-T: So they may not be earning as much as they could. Then when it comes to care, she says they end up paying more for extra help because they often have less of a family network...

 

SUZANNE: Whereas one person can call perhaps a niece or their kid and say, ‘can you please come sit with your grandfather or come sit with your uncle so I can get out for the day?’ They may not have that, so they have to pay someone to do it.

 

AM-T: So caring for someone is often harder financially for LGBTQ folks. Who, Suzanne says,  are only half as likely to have a partner as they age. But when the LGBTQ person is a spouse caring for their partner, there are other issues to contend with. 

 

SUZANNE: Often it's the fear of accessing healthcare. They're afraid that if they bring in like a home health aid to give the caregiver some assistance and relief that if that home health aide finds out they're in a, you know, a home where there's a same sex couple or a transgender person, that either they will give less warm and appropriate care or they'll just ask to be reassigned to a different patient...or otherwise, just not do their job appropriately because they're going to be discriminatory.

 

AM-T: It’s not just care at home that people worry about. They’re afraid of how they’ll fare in retirement communities, assisted living facilities or nursing homes. Prejudice and bullying by elderly residents or staff can ruin the experience. Suzanne says some older LGBTQ people end up going back into the closet when they move into a facility. Taking care of Mala’s parents has made both Mala and Vega think about how they want to age and who their own caregivers might be. They know one thing: they’re unlikely to have the same type of dedicated care Mala is giving her mom right now. 

 

AM-T: Mala and Vega don’t live with Picha any more--they needed their independence back after several years of living in Mala’s old family home. But they found a building with two apartments on the same floor, one across the hall from the other. 

Mala drops in on her mother several times a day. She is in her 80s, and diabetic. They speak in Tamil...

 

MALA: She said she keeps eating...I said did you check your sugar, she said ‘no, I just keep eating something here and there so I can’t check my sugar.’

 

AM-T: Mala cooks her mother’s meals, orders her medications, and does almost everything else. 

 

MALA: I check and see how she’s feeling for the day, like is she feeling tired? I try to troubleshoot with her, do you need some exercise…

 

AM-T: She also drives her to doctors’ visits, makes sure her bills are paid, and takes care of other financial stuff. Meanwhile Mala has a full-time job. For the last several years, she and Vega have had their own business, a consultancy for non-profits. They work from home, which makes looking after her mother easier than it would be otherwise. 

Technology helps as well. If Mala is busy with work in the morning...instead of going over, she’ll Facetime her mom on her iPad…

 

MALA: It auto answers. So she doesn't, ‘cause she doesn't know exactly how to like answer calls. So it auto answers and then she wakes up and she sees me on her iPad and she's like, Oh, hi, hi, good morning. And then I'll be like, how did you sleep, or when did you go to sleep?

 

AM-T: Mala is proud of her mom. This new iPad user was only educated to a fifth grade level in India. She married at 17. And after losing her hearing, she led an isolated life at home. 

 

MALA: You know, I just keep thinking, OK, so my dad did get a chance to see some of his dreams come true. And now my mom is finally getting a chance, and she's living by herself in her own space for the first time ever! And she, she just did this when she's 83 years old. And that just blows my mind. Talk about role models. I'm like, I want to be that able to change.

 

AM-T: She says looking after her mom feels different than caring for her father. 

 

MALA: With my dad it was more about duty and with my mom it just feels like such an honor, ‘cause like my mom and I did not have a relationship at all growing up. She was, she became deaf when I was in second grade.

 

AM-T: After Mala’s mother lost her hearing, they couldn’t communicate well, and grew apart. Mala’s eldest sister helped to raise her. She says today, she and her sisters each play a different role with their mom. Her oldest sister has a friend-like relationship with her, her middle sister is a calming presence…

 

MALA: And then I'm the one who kind of takes care of all of her, makes sure that she has access and that she can get around. And I actually am able to now sit and talk with my mom and spend more time with her in ways that I never was when I was a kid. So it just feels really special. Just yesterday, my mom said, ‘you've given me a new life.’ And I said, well, you gave me life. So you know, we're even now [laughing].

 

A M-T: Since I first spoke to Mala and Vega they’ve moved again - along with Picha. They now live in the same apartment complex as Vega’s parents.

It’s the same setup as before - Mala and Vega are in one apartment, Picha is right across the hall. 

Vega says the move was good timing for Covid-19 - it’s been a relief to be so close to her own parents as well as Picha. The five of them see each other all the time and hardly anyone else. 

Vega says the isolation has taken a toll on Picha because she’s naturally very sociable. But they’re glad they’re all together and looking out for one another. 

In our next episode, we’ll meet a family who have made taking care of one person a way of life for them all: 

 

TAPE/BRENDA: we are so proud of this house because it is a four generation dementia-friendly home. How cool is that? How many people can say there's four generations in the house?

 

Tight Knit is a project of the Ralph C. Wilson Jr. Foundation.

Our story editor is Diantha Parker. This series is sound designed and mixed by Thrilla Park Audio. And our executive producer is Mikel Ellcessor for Limina House. 

We had production assistance from Mary Sier, Sara Ali and the team at Lafayette American.

The caregivers we’re meeting are just some of the many people out there who are looking after someone.If what you’ve heard reminds you of someone you know, please share this with them. You can find this story and more at tightknit dot org. 

You can also join the conversation on social media @RCWJRFI’m Ashley Milne-Tyte. And thanks for listening.