Episode 185: LGBTQ Sandwich Generation

Brent Wright is one of 64 million sandwich generation Americans who simultaneously cared for an aging parent and his kids, all under the same roof.  What made their setup unusual?  His mom moved in with Brent and his husband, Sandis, plus their two daughters. Brent tells us how the dynamics in their family changed when his mom moved in, and how his 7- and 10-year-old daughters help care for their grandma. Brent Wright is the Chief Operating Officer of Family Equality, a nonprofit that advances legal and lived equality for LGBTQ+ families, and for those who wish to form them, through building community, changing hearts and minds and driving policy change.

Learn more about Family Equality: Advancing Equality
Family Speak Out: Pearls of Wisdom Program

Also mentioned in the show: T. Rowe Price Annual Parents, Kids & Money Survey

UPDATE: a little over a year after this show aired Brent’s position with Family Equality was eliminated due to funding cuts. He is now Graduate Program Coordinator at Merrimack College in North Andover, MA.

 

INTERVIEW TRANSCRIPT:

JANA PANARITES (HOST) – According to a recent survey by T Rowe Price, more than a third of parents with 8 to 14 year old kids are also caring for an aging family member. 68% of them report that their aging parent or relative is living with them. We’re talking about the sandwich generation: adults who care for their own kids while also caring for a parent or grandparent or both. Brent Wright is a dad who cares for his two daughters and for his mother who moved in with Brent for health reasons. What’s unusual about his situation is that Brent’s mother moved in with her son and her son’s husband. Brent Wright is the Chief Operating Officer of Family Equality, a nonprofit that advances legal and lived equality for LGBTQ+ families, and for those who wish to form them, through building community, changing hearts and minds and driving policy change. Brent Wright joins me from Boston. Brent, welcome to The Agewyz Podcast.

BRENT – Thank you. I’m glad to be here.

JANA – So, I read that you worked in Georgia. Are you from the South? Tell us about your upbringing.

BRENT – I grew up in New England, actually in Maine, as did my husband.  And we met right after our college years in Portland, Maine, which is sort of a hub for folks who are pursuing college. There’s a number schools based out of the Portland area. And then, you know, over the years, we had some job relocation moments, and at one point that brought us to Atlanta, and that’s where we adopted our oldest daughter.

JANA – And do you have siblings?

BRENT – I do. I have three siblings. Only two of them are still with us. One passed away about four years ago now.

JANA – Oh, I’m so sorry.  Do you mind sharing your age?

BRENT – Sure.  I’m 53.

JANA – Okay, so you’re a boomer, like me.

BRENT – I am.

JANA – So, this is not a podcast about gay adoption, but let’s go there anyway, to properly set the stage. I wonder if you could talk about your experience of adopting your daughters. I know this was a transracial adoption.  Tell us about some of the challenges that you faced, and when you adopted.

BRENT – Yeah, our oldest daughter is 10 now, and when we adopted we were also relocating, like I mentioned, to Georgia at the time from Chicago, and really knew that we wanted to be out of the city and in a more suburban environment to start our family, and got connected, surprisingly, in the Atlanta area to an agency that was very gay friendly.  It was really well known at the time for being one of the only national organizations that did, you know, really proactively reach out to people in the LGBTQ community who were seeking to build their family.

BRENT – And they quoted us right from the beginning that it’s about a two year process. And it was interesting, because almost right to the day, it was two years for us to get through the process and to actually successfully adopt our daughter. But, you know, we had the typical journey for that adoption where we had some stops and starts, some matches that didn’t work out, and for various reasons. And then we said Yes to the match for my daughter’s birth mother and everything really fell into place. It was one of those moments where it was, like, this was meant to be somehow.  It was a really great experience.

JANA – Is two years typical for an adoption, or is that just for gay adoptions?

BRENT – They quoted it as typical for anybody who’s in the adoption pipeline, between just sort of the natural stops and starts that you have with some of these matches.  When we decided to be really open to any match, including matches from races that we don’t have, it was a commitment that we made by really reaching out to our network and our community to understand the responsibility we would be taking on to do that, and what that would really mean to bring a child up who did not have the same race that we hold. So that’s been a very intentional decision that we made in a very, very multi-layered process, to make sure we give that the justice that we can.

JANA – Yeah. Well tell us about your daughters – Noelle and Olivia, right?

BRENT – So Olivia’s 10, she’s our oldest daughter, and Noelle is soon to be eight.  She’ll be eight in January. And they’re both African American. They’re not biologically related. They have different birth mothers. When we adopted our oldest daughter, we had only planned on having one child, and as often is the case for families, unexpectedly, a second opportunity came our way.

BRENT – We had close friends who had just adopted as well, and they had an experience with their adoption agency where they’d heard about this child that was matched with parents who both lost their job and had to back out of the adoption at the last minute, for pretty dramatic financial reasons, and they were looking for a rematch for this birth mother, who was going to be giving birth in about four weeks. And we said Yes to the opportunity, thinking that we’d had stops and starts with our first daughter, and it was unlikely that it was going to work out. And four days later, we got a call that we were going to be parents, and she’d gone into labor early, and we needed to immediately come to Philly. We were in the Boston area, and we became parents in four days.

JANA – Wow.  And you said, Olivia is the older?

BRENT – Correct.

JANA – The older one, okay… and Noelle.  So that’s nice, she has a sister.  Does the agency that you went through specialize in gay adoptions, or just adoptions across the board?

BRENT – They serve the broader community.  They just had found that their sort of angle was they were open to working with gay couples or singles, and just had become really well known in the gay community for that. They ended up going out of business a couple of years ago, so they no longer exist, which presents its own challenges for the families that worked with them.

JANA – Did you have any concerns with adopting, first of all as white parents, and also as gay parents?

BRENT – I think for me, I had a lot of connections to communities of color through the work, and through my own extended family. So I felt more fluent in terms of what I needed to really be thoughtful about and intentional about. So I went into it with more comfort than my husband necessarily had. He had far less experience in that way and was really worried about everything from haircare to just making some really not culturally appropriate decisions, or you know, resources and things like that. So it was definitely a process for us. We talk about race in our family almost every day. My girls are still big tub takers and it was a great chance to have conversations with them during a quiet time and to talk about these kinds of things. We still do that today a lot. My oldest daughter no longer likes to take a tub with her sister, but, you know.

JANA – Yeah, okay. Well, I want to get to your mom, because that’s the main thrust of this conversation. So I’m curious to know what your relationship with your mom was like before she moved in, and what precipitated the move.

BRENT – So, I was a later in life child, so my parents were older when I was born. And when I came out, we had a conversation about it, but in typical New England fashion, it was like, I’m okay with that. Let’s just not talk about it.

JANA – Move on. (laughter)

BRENT – Yeah, exactly. And from the time they met Sandis, my husband, when we were dating, you know, they treated him as though he was like anybody else they’d met that I had dated. And they weren’t homophobic in that way at all. I didn’t have that experience. But I also didn’t have that level of conversation or relationship with them that it felt like they really knew what my life was like and understood it. Again it was sort of that, don’t ask, don’t tell, almost kind of vibe to it over the years.

BRENT – My dad passed away in the year 2000, so my mom after that had some health struggles and had been in a semi- assisted living situation. As those health pieces progressed, I felt less and less comfortable that she was safe and her hygiene wasn’t at a quality I felt comfortable with either, and I knew she wasn’t comfortable with. Growing up with her my whole life, I knew you know what her level of comfort with that was so-

JANA – Was she in Maine?

BRENT – She was in Maine. And, you know, I have some extended family that’s still in the area where we grew up, and where she was living, but it wasn’t as close as like a sibling to check on her and really make sure that things were okay on a daily basis. And then she had a fall, a pretty significant fall, where she cracked her hip, broke her hip. And at that point, we just decided that was the final straw.  That really told us, like, she needs more than she’s getting right now. And our home had a first floor bedroom and we just felt like, you know, that was the natural next step – was to offer that space to her and bring her down to live with us.

JANA – Mm-hmm.  And what was that conversation like, with Sandis?

BRENT – You know (laughs), it was a lot about talking through how our life was going to change. We knew what it was like to have a baby. We knew what it was like to have another being, very dependent on us for their meals and for their care and even their hygiene. So you know, we had a lot of conversation about that. I think conversation is much different than reality.

JANA – It sure is.

BRENT – So there was definitely some reality that we had some adjusting to do.

JANA – Was your mother resistant at all?

BRENT – You know, I think at that point she was so unhappy with where she was living, in terms of her ability to even get her laundry done, and just like the things that for her no longer were things that she could do independently.  And she really needed more assistance than she could get in this semi-assisted environment. And then once she broke her hip, she really just needed pretty intensive assistance for those first few weeks. So it just wasn’t a reality for her to even really stay there at that point.

JANA – What do you mean when you say semi-assisted? What does it look like?

BRENT – So the place that she was living in was owned by an extended relative, a cousin of my mother’s who had worked in a nursing home for many years. And after she left that and retired, she and her husband bought a home that had multiple bedrooms and was large enough to offer this to other folks.  And she had a live-in nurse that lived there also that helped the folks that lived there.

JANA – I see.  So it was kind of like a boutique setup.  That’s actually becoming more popular.  So was there ever any discussion that she might move in with one of your other siblings?

BRENT – You know, I think if my sibling that passed away, that might have been an option for him, but the other two – no. They both have families and situations that I don’t think – and their homes aren’t really set up for that. And we felt our own pressure around it because our house did have this first floor bedroom with its own bathroom. And there were just so many factors that really lent themselves to the accessibility for her.

JANA – Do you other two siblings live in Maine, or are they elsewhere?

BRENT – I have one that lives just outside Nashville, and then one who’s in Maine, but she lives in a very rural area on a lake.

JANA – So that’s probably a challenge, too – living out in a rural area.  So when did your mom move in?

BRENT – That was about three and a half years ago.

JANA – Okay. Not that long ago.

BRENT – No.

JANA – So how’s it going?

BRENT – Well, she doesn’t live with us anymore.

JANA – Oh, she doesn’t?

BRENT – No.

JANA – Oh… so what happened? Take us through that.

BRENT – Yeah. So the first couple of years, I think it went pretty well.  I mean, there was a lot of challenges for us as a family because some of the things that we wouldn’t normally do as a family – and we are big travelers, so we would, you know, at the drop of a hat: Oh, we don’t have any plans this weekend, everybody’s going to pack a bag and we’re gonna go a couple states over and just do it this fun little getaway weekend.  There was none of that anymore. Everything had to be really scripted and planned.

BRENT – And, you know, we did establish a network of support. So we had a home health aide that would come in and do some work with my mom. And then we also found some really great care providers who would actually stay at the house overnight if we ever needed that. I felt like there was a stream of people in and out.  It got to the point where like, I didn’t even have to answer the door. They’d just come in and knew their way around.  That took some time, obviously to build those relationships and find those relationships

JANA – So it was sort of manageable for a certain period of time.  How long did that last?

BRENT – I would say that was about two years.  And it was over the last, you know, after we got past that two year mark, there were a good six months where it became super challenging.

JANA – How old is she, by the way? How was she when she moved in?

BRENT – So she’s 91 now. So she was like, probably 88, because she’s an August birthday. So she was probably 88. But you know, her help just – people at that age, all the little things become bigger things. And we could see clearly the dementia side of her diagnosis was progressing. She was starting to like, see things that weren’t there. And the kids especially my youngest daughter, didn’t understand that. That stuff became harder on the family. And then her toileting became increasingly a challenge for her.

BRENT – At the point at which she went in the nursing home. She had had a couple of really scary health moments where she passed out. And she ended up getting diagnosed with ovarian cancer that had spread pretty much throughout her body.

JANA – Oh my goodness.

BRENT – And they could see spots in all, basically, the major organs, which was an explanation of why her toileting was getting bad and like all those different things. And because of her advanced age, they couldn’t treat it the way they would normally treat cancer. She couldn’t withstand chemo or radiation or treatments. And she needed blood transfusions pretty regularly.

JANA – When was that diagnosis?

BRENT – That was around December, January.  Around this time last year.  And it was really the doctor that made the decision for us, where basically, as they were telling us all of these different things they’re like, and she can’t go home with you. She needs to be monitored. Her blood levels need to be monitored, she’s probably going to need ongoing transfusions.  Like we can’t treat the cancer, we can only treat the symptom.

JANA – So is she essentially on hospice?

BRENT – So the crazy thing is around January, February-ish, when she got discharged last year, she went into a nursing home, she went into the first one, which, you know, was probably okay. But she had an attack of this cancer related symptoms where she had to leave the nursing home and go back into the hospital. And when she got released from that second visit, we chose a nursing home that was more highly recommended to us by some of the folks that we know, we have a good friend who’s an occupational therapist here in town and she works at that nursing home and so we, we chose this place and it’s super close to our house. It’s like half a mile from my house. So I still go up every day. I do her laundry, I bring her special food treats and stuff like that.  And the kids go up, so it’s nice. We still have a close family connection to her, but we now have trained professionals who can actually meet the needs that she now has.

JANA – So she’s 91 now?

BRENT – She’s 91. But you know what’s crazy? For us, since she’s been in this nursing home, I just had her case meeting with the folks who are on her care team. And her most recent round of blood tests and all the other things that they run are so good. She is literally the cat with nine lives. I mean, she just – we thought, she’s been on death’s door so many times now that, like, I’m just like, Okay, I think she’s gonna be around a little longer. The most they have to do is that blood transfusion when her levels drop, and she’s had some pretty dramatic weight loss moments. She’s gained a little bit recently, but she’s still really skinny and really tiny.

JANA – Transfusions are really exhausting for older people, too.  For anyone, but especially for older people.

BRENT – You know, it’s so weird though, like when they do the transfusion, her entire body color almost immediately changes. She goes from, like a very sallow yellow-ish tone, almost immediately to a more – pinker – like you can see it almost going through her. It’s so weird.

JANA – Wow.  That’s fascinating. And I was going to ask, because in the survey that I mentioned in the open, it was also reported that nearly a third of dual caregivers spend $3,000 or more a month caring for an aging parent or a relative. So what does that look like for you? Are you paying for her care?

BRENT – So she had to get on what’s called MassHealth, here in the state. And there were a lot of financial eligibility requirements around that, where she had to liquidate what small amount of fiscal assets that she had.

JANA – So that’s like a Medicaid program?

BRENT – Yeah. And it’s intense. They go back and look at bank accounts. And there’s all kinds of hoops that you jump through to get through that process. But yeah, it’s expensive. I mean, it was shocking to see nursing home bills before that actually kicked in. You don’t pay anything until their eligibility is determined, so that these bills just build up.  And you get them in the mail, and you’re like, Okay, it’s now $40,000. It just keeps growing.

JANA – Wow.  And you just put the bills aside because you’re not legally liable for them while the process is being executed to go on MassHealth?

BRENT – Exactly.

JANA – I see.

BRENT – And we were super lucky. Because again, we knew a couple people who were connected to the field, who had told us, don’t spend down what little bit she has.  You actually set up a trust where it’s held as an aside, and all these little meals and things they can actually reimburse from the trust. And then when she passes away, if there’s money there, the nursing home, those payments, get applied to it, and then it goes pretty quickly.

JANA – Yeah, that’s a whole other topic. Well, I want to go back for a minute to when your mom moved in with you and how your girls reacted to that initially.

BRENT – It was interesting because I think for them, it was a transition of this person that they had a lot of happy, affectionate memories for, to seeing more, like, the daily struggles that this person goes through, and whether it’s the toileting, the feeding, the getting dressed, the showering, all those different things that are such a challenge.

BRENT – And I say this to my husband, but also to other members of our family: as hard as it was during those couple of years, I think it was so good for them, because they have a level of compassion and understanding I’m not sure at their age they would have had. Like when we go up to the nursing home now, they immediately take out the Lysol wipes that she likes to have her tray wiped down with.  My older daughter will immediately, when her meal comes, when the nursing home staff bring that in, she immediately uncovers it and starts cutting up her food for her.  Just things that are instinctual for them now.  This person needs my assistance and I don’t need to be asked to do it.  I know what I know what I need to do.

JANA – That’s really great for them to have that exposure. So before your mom moved in with you, let’s say she had to move in with you and for some other reason, do you think it would have been difficult for her to move into a gay couples house? I mean, you know, obviously, a lot of gay adults have parents who rejected them, or they haven’t entirely accepted their sexual orientation, even though their child’s now an adult, leading a full, healthy life. So that’s why I was asking you earlier about your relationship with your mother, because, you know, I wondered whether she was resistant because of your sexual orientation, because this is quite common, right?

BRENT – Yeah, yeah. I think it would have been a different story if it was my dad.  As much as he was accepting on the surface, I think the reality of living with us would have been different for him and harder. There were moments when my mother’s dementia flashed, and you could see things where she was super confused. Like, I remember a moment when she had one of her hospital stays where she was telling the nurse Oh, are you single?  You know, this is my son, you should talk to him. Like, you know, almost trying to do this weird matchmaking thing and I’m like – eh?  And the nurse would know.  Like, Oh, I’m with my husband and my two kids.  Like, what? We’re not matchmaking here. So there’s some of that. You know, that would flare up now and then.

JANA – Well, Brent, what are you hearing from other LGBT caregivers, if anything about caring for aging parents?

BRENT – You know, there’s just not a lot of ways for us to connect with each other. I think, I found that it was really hard for me even with my siblings to talk about what the reality was like, because if you don’t experience it I think it’s really hard to understand completely.  And I think the limitations it places on you socially, you know, whether it’s the family trips or doing stuff with other couples and other families and things like that, like there are so many more factors that go into that. And at that time, I couldn’t at the drop of a hat, accept those invitations.  I had to say no more often than not.  Or I was the one not to go, while the rest of the family went.

JANA – Yeah.  Of course, this is true of all caregivers, regardless of sexual orientation. Do you hear stories from other gay and lesbian caregivers, of challenges that they face, particularly because of their sexual orientation?

BRENT – From the folks that I know there’s a lot of worry and fear about it because of the relationship that they have had, about their identity over the years with their parents. Like, what is going to happen when that time comes? And if that is an ask of me, or that I’m the only option, how am I going to handle that? And what will it be like? I think there’s just so much stress in folks who see that as more imminent.

JANA – Yeah. Is there anything that you would like people to know about LGBT caregivers that they might not know?

BRENT – I think finding your village, finding your network, you know, like that was so critical for me in those first six months. It was about understanding what resources are out there that I could tap into for some support, some “respite,” and there actually are respite providers out there for caregivers.  But also just having a network of people who either had it going on or had done it before, or who could talk about it and understand it. And I think that’s always the key is that feeling of – you get it! You know, you get it!

JANA – Yeah, exactly. It’s such a relief, isn’t it? Do your other siblings visit your mom?

BRENT – They do.  Not as regularly as she or I would like, I think. It’s that typical story of, they sort of take for granted that she’s going to be there tomorrow. And I see the reality of that more than they do because I’m seeing her every day.

JANA – Yeah. Well, there’s something sobering about caring for somebody who is older.  You really, in a way, have to face your own mortality. You can’t escape it. How would you say your relationship with your husband changed during the time that your mom lived with you, and now?

BRENT – You know, I think that these sorts of things test your relationship, but also make you realize how strong it is.  And I think that’s been true of this, it’s been true about becoming parents. And you know, I think that’s why I’m with my husband actually… is because we stand the test of those challenges, and have over and over again.  I think that’s part of how a lot of people survive their relationships, and that’s why they survive.  It’s because they’re able to withstand some of those challenges.

JANA – You guys have been together a long time, haven’t you?

BRENT – We have. (laughter)

JANA – Go ahead, tell me.

BRENT – 25-plus years.

JANA – Wow.  That’s awesome, though. That’s fantastic. Brent, I want to ask about this program with Family Equality called Family Speak Out, because I know that you engage with grandparents and elders in the LGBTQ community. And I would love to hear about Pearls of Wisdom, that part of the program.

BRENT – Yeah, you know, over the years, we’ve learned that the ability for our community to tell our stories is our most powerful tool to connect with each other, but also to change hearts and minds, to help people who may not understand the LGBTQ community from a firsthand perspective, to do so in ways they can relate to.

BRENT – We started Pearls of Wisdom specifically to focus on the grandparents and the elders in our community. The woman who sort of inspired it talked a lot about a Jewish tradition around basically passing on knowledge to the next generation, so the pearl of wisdom. And that’s really what started the program. I think we’re in our fifth year of it now, I’d have to go back and look for sure. But it really is about that experience of helping people who may have been conflicted by their child coming out, who may not have been as accepting of their lifestyle or of their community members. And as they became grandparents, they really rethought those relationships and thought about them in new ways. And I think it’s been a huge benefit to our work that we do at Family Equality, because it gives us a chance to really reach out to people, speak out to people and help others understand that perspective.

JANA – We’ve been speaking with Brent Wright, caregiver to his daughters, Olivia and Noelle, and a caregiver for his mom, who no longer lives with Brent and his husband, but lived with them for about two years.  Brent is the Chief Operating Officer of Family Equality, which just celebrated its 40th anniversary, and you can find out more about the work of this great organization by going to familyequality.org.  Brent, thank you so much for sharing your story on the podcast. It’s been fascinating.

BRENT – Thank you.