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A big chunk of family caregivers in this country are part of the “sandwich generation” – people caring for young children and aging parents at the same time. Robert Ingenito was one of them. After caring for his dad and raising his young daughter while working, Robert came to a breaking point. He decided to move his dad to an assisted living facility. It wasn’t an easy decision, and it’s one he still grapples with today.

Learn more about respite care, including respite care opportunities in your area, at ARCH National Respite Network’s website. The website provides a National Respite Locator Service, and information on how to pay for respite care.

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.

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Transcript

SPEAKERS

Sender 2, Sender 1, Robert Ingenito, Sender 3, SuChin Pak

SuChin Pak  00:01

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 healthcare policy and practice, and has a long history of exploring what the US can learn from the best healthcare 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.

 

Sender 1  01:31

It’s time consuming caring for my father and caring for my daughter at the same exact time.

 

Sender 2  01:37

My kids are five and seven years old. My parents are in their late 60s. Some of my biggest struggles is just balancing everything on my plate.

 

Sender 3  01:46

This sandwich generation. No one prepared us for it. No one prepared me for it.

 

SuChin Pak  01:53

I feel exactly the same way all of a sudden you hit your 40s, and nobody’s told you that you’re going to have to raise children and take care of your parents at the exact same time, 30% of family caregivers in this country are part of the sandwich generation, people caring for both young children and elderly loved ones. And many of us also balance work on top of it all, even when there are good days where everything is running smoothly, no one is sick, there’s no emergency to take care of. There’s still this constant feeling of stress. It’s always there. Sandwich generation. I mean, it’s such a cute way to describe a time that for many of us might actually be the hardest years of our life, being stuck in the middle, being pulled in a million directions, often feeling very overwhelmed and very alone. This is uncared for, I’m your host, SuChin Pak. Today I’m talking with Robert Ingenito, who is part of the sandwich generation of caregivers. For several years, Robert’s dad lived with him and his wife as they raised their daughter. Robert worked part time as he juggled family life and being the primary caregiver for his dad. Robert’s father died in February. He was 93 I spoke with Robert about one month later. He was grieving, of course, but he still wanted to talk about his experience, to put words to some of the things he had gone through. Caring for his father had been such a big part of his life. Their relationship in general was so strong, though, Robert says they weren’t always close. What was he like as a dad?

 

Robert Ingenito  03:40

He was quiet. I don’t have many of your typical father son memories. We didn’t do things like play catch or go to baseball games. He wasn’t the more, let’s say hands on parent as my mom, he really focused on his career as attending a physician at a couple of different local hospitals before going into private practice. But you know, he was definitely present and around and just loved being with with me and with our family and going on vacations and and all those things. When my mom passed away when I was 19 years old, I have this very strong memory of my dad and I in the basement of our house, and we’re doing the laundry. And you know, there were two things he he said, One was that it wasn’t supposed to happen this way because my mom was so much more younger than my dad. But two, he acknowledged the fact that he he wasn’t the more hands on parent with me, and that he. So you know that the years ahead would bring us closer together, and you know he did. It was 25 wonderful years of some great father son, time.

 

SuChin Pak  05:20

When Robert was in his late 30s, living in New York City and just starting a new family, his dad was approaching his late 80s. After his dad had a heart attack, Robert took on some caregiving duties, like preparing meals and going to medical appointments, but things really changed when he and his family moved to the suburbs with their toddler and Robert’s dad moved in with them. So all of this is happening. You’re starting a family, your dad is moving in. I mean, this is why we’re sitting down with you. There’s so many books and conversations and TV shows around like becoming a new parent, you know, and the joy of bringing a life this whole kind of part of your life that so many of us find ourselves in, where we’re raising our own family and then taking care of aging parents, that part was like a black box.

 

Robert Ingenito  06:19

Right, I was not expecting him to live up to 93 years of age, right? Like we are in a world today where people’s lifespans are going much further beyond where they used to be. And so I think the fact that I was in this, you know, what’s called the sandwich generation, where, you know, I have a little one, and then also a geriatric one that I’m now taking care of at the same exact time was just, you know, crazy.

 

SuChin Pak  06:53

Yeah, no, it is. It’s a whirlwind, like, there’ll be a moment where the wind dies down, I’m, like, holding my breath, and then it something kicks it up again, and and this juggling of of these two phases in your life that are so different but also weirdly similar.

 

Robert Ingenito  07:13

Yes.

 

SuChin Pak  07:14

And then you’re, you’re both the child and the parent in both situations.

 

Robert Ingenito  07:20

Yeah, you know, it was funny in September of 2020, you know, we’re in the midst of covid, right? And our daughter is now, I think she’s probably about, you know, two or three years old, and we’re like, you know, in the middle of potty training. But at that same time, my father had a very mild stroke, and he fractured his hip, and so after he went to the hospital, and, you know, came back home, we had to do things like install chair lifts and we bought walkers and a bed, cane and a commode to go over the toilet. And, you know, this is kind of a funny little story that my wife and I, you know, would talk about. But you know, as I said, it’s around this time that we’re potty training our little daughter, and she has a special potty seat, right that goes over the regular toilet seat. However, whenever she needed to go to the bathroom, we had to swap out my dad’s commode with her potty seat. And whenever my dad had to use the bathroom, we would swap out her potty seat with his commode. And my wife and I would say, these potty seats and commode manufacturers need to get together and, like, build a device that can accommodate sandwich generation households.

 

SuChin Pak  08:47

I mean, I just, I love it. It’s, you know, you gotta just, like, look at those moments, and it’s the absurdity of, like, hold on. Wait, which? Wait, who has to pee? Hold on, I gotta get the right toilet. I just, I love it. I know I’m in that phase where my my dad just doesn’t want to eat. What do you use to eat? And so I’m like, am I cooking for to eat chicken nuggets right now? Like frozen chicken nuggets for my kids, and then my dad, that’s all he wants to eat. And my dad was never that person.

 

Robert Ingenito  09:27

And it’s just also a sweet like changing of identity. The parent becomes, yeah, the child, and the child becomes the parent. And you’re making decisions, you’re you know, you’re cooking meals, you’re doing tasks that you’d normally associate with, you know, changing of a diaper on a baby table, when no you’re actually doing that for your loved one, for your parent or for, you know, somebody who, uou need to take care of, and it’s hard, it’s really, really tough to kind of put your, your brain and your, your whole being into that new role with this person.

 

SuChin Pak  10:16

When we come back, Robert talks about how this new role became all consuming, and when he got to his breaking point.

 

SuChin Pak  10:44

Talk to me about what that care looked like for you. You know, describe a typical day for me, you know, when he was living in your home, and what you were doing for him on a day to day basis?

 

Robert Ingenito  12:13

A typical day was usually getting up, getting our daughter to school. Maybe I would put in a couple of hours of work for my part time job, and then I would come back to the house, get him out of bed, usually around like 11 o’clock in the morning, help him change out of his pajamas, into some day clothes, get him downstairs, give him a cup of coffee, set him on the couch, maybe turn on the TV, or give him a book or a crossword puzzle to do, and then I could kind of leave him out to himself for the day. You know, he would be able, with his walker, to get up, go to the bathroom on his own, and that was pretty good. I would go back to work and pick up my daughter from school, bring her to her swim lesson or whatever. And then we’d come back home, and I’d make dinner, and that would be, you know, kind of the highlight of his day, being with everyone around the dinner table. And then after, you know, a couple of hours, usually around 9, 10, o’clock, I’d, you know, help him up the stairs with the stair chair, help change him into his pajamas, get him back into bed, and wish him good night. And that was kind of like the routine of doing that while at the same time raising our little daughter. It was kind of like a day in, day out, routine that you get caught up in, and you don’t realize that so much of this, these small but important tasks, are becoming so much a part of who you are. And when it’s over, you just feel like, what happened? Where did that piece of me go? And it’s taken quite a while for me to I’m still kind of coming to terms with that.

 

SuChin Pak  14:16

I mean, I don’t think I’ve ever heard anyone say it that way? And it’s so true that these small tasks become who you are when you’re a caregiver.

 

Robert Ingenito  14:27

Yeah, I would shave him, you know, I would, I would shave him usually, like, once a week, on this on the weekends. And my dad, he, you know, while he was up there in the years, he had a pretty good, you know, faculties, but his hearing was really bad. And so when a person’s hearing is bad, communication right, starts to become a thing. And I once a week when I would shave him, you know, and I put the shaving cream on his face, and I take the razor and carefully, you know, shave whatever stubble he had there. It became such an incredibly intimate and personal form of communication between me and my dad, and, you know, it wasn’t, it’s not like the most favorite task that I had to do, right? But I kind of liked it, and I miss it now because it was just a way for me to show him that I loved him.

 

SuChin Pak  15:42

Yeah, I mean, I feel the same way when I am like coloring my mom’s hair, because she’s just all and she refuses to just accept that her hair is gray. She won’t let that go. And I think also, too, it’s the touch, you know what I mean, because it’s like so much of of of caregiving becomes like a like a obligatory or like, you know, a touch that it that has to lead somewhere or do something. And then when you’re in those intimate moments and you’re holding your father’s head, or I’m holding my mom’s neck to make sure that, you know, I’m getting her hair just right that touches, I mean, it says it’s everything.

 

Robert Ingenito  16:27

Yeah, it’s everything. It’s all about mother and daughter. It’s all about father and son. It’s just like, you know that bond and you don’t need words at that moment. You just, you just rely on touch and care. And you know, as I’m shaving him, I’m thinking, oh, I don’t, you know, I don’t want to nick him, I don’t want to cut him. And you know, you’re doing it carefully, and you’re just so present in that moment, yeah.

 

SuChin Pak  17:01

But it wasn’t always easy to savor the time together, especially as Robert’s caregiving responsibilities became more intense.

 

Robert Ingenito  17:10

At night, he would have to get up from bed to go to the bathroom, and I tied this bell around his walker, and whenever I would hear it ring, I would spring out of bed and run over and be with him, just to make sure that he wouldn’t fall and I wasn’t getting sleep. And my wife said, you can’t keep this up. You just you can’t keep doing this, you know, to yourself. And that was the straw that broke the camel’s back. For me, you’re thinking, well, I can do these small, incremental things. I can do things like shaving and that stuff like that. But when it was coming to the point where I was just physically tied to the house because I was so afraid for him and his health and safety and well being or worrying about a fall, that was the piece that I just knew I can’t keep this up.

 

SuChin Pak  18:20

Robert did have a home health aide help out at the house some days, but he desperately needed some deeper breaks from caregiving.

 

Robert Ingenito  18:28

There would be, on occasion, maybe, like, two or three times where we would do this thing called respite care. And you know, I’d explain to my dad that he’s gonna have to go into a place for like, two weeks where I know he’s gonna be, you know, taking care of, you know, in a safe environment. And he’d say to me, no, I don’t need to do that, right? Like, why are you doing this? And I would have to each time remind him, like you’re not doing this for you. You’re doing this for me, right? Like, I need to take a break from this caregiving. I need to, you know, focus on my family. And when I would say those things to him, you know, he kind of understood what, where I was coming from, and you know, agreed to doing, you know, the respite care.

 

SuChin Pak  19:26

it’s so important for caregivers to ask for help and take a break when we need it. Respite care provides short term relief from a few hours to a few weeks, giving primary caregivers time to rest, travel or spend time with other family and friends, you can look for providers through a home health agency or your local Department on Aging, but as Robert learned, sometimes respite care just isn’t an option. Were there moments when you were. Taking care of your father, that you felt that it was pulling you away from being a father.

 

Robert Ingenito  20:10

Oh, yeah, absolutely. The one memory that really rises to my mind is in August of last year, last summer, my family and I were planning to go away on vacation, and I had signed up my dad to do this respite care so that we could go away, and he got sick. And you know, when you do sign up for respite care, you have to go through this process of being evaluated, and when he got ill, well, the evaluation that had been conducted no longer applies, and so the respite care had to be canceled, and I had to stay home with him, and my wife and our daughter went away on this trip, and it was hard. It was really, really hard. Leading up to this moment, I was realizing that this was becoming a bigger and bigger part of my identity. And I would remark to my wife, you know, how long can I keep this up? But after that trip, after that experience, my wife and I, we kind of came to this conclusion that, you know, this is just not sustainable, and that we needed to find a way for him to get the care that he needed that wasn’t going to be as taxing on on me or on our family, and that’s when we moved him into assisted living, where he stayed for the next about five months of his life.

 

SuChin Pak  21:54

Moving a parent into assisted living isn’t an easy decision for a lot of people. For Robert, though, something happened decades earlier in his life that made it particularly difficult.

 

Robert Ingenito  22:06

So I’m 19 years old. I’m a sophomore in college. My mom, who had been battling colon cancer, was basically at the end of her rope, and they told us that we needed to pursue hospice care for her, and we brought her home, we gave her everything that we could, and she from her deathbed, she says to me, you know, don’t put your father in a nursing home. And for a 19 year old sophomore, you know, it had an incredibly huge impact, and something that I carried with me for the past, my gosh, I’m now 44 years old, so you do the math, right, like every single decision that I made about my dad’s care was colored by that promise, and I can still remember it so vividly. And so when she made this, this request of me, I just said, yeah, I’ll do it. You’re, you’re my mom. You’re dying, I want to do whatever it is you want me to do, because I love you. And she was in so much pain, and she was coming to the end of her life, I wanted to do whatever I could to be a good son for her.

 

SuChin Pak  23:43

Oh, when you tell me that story, just like how much love that your mother had, you know in her last moment, she was like, take care of this person that I love. So there is some poetry, some some beautiful. It’s it’s both it’s the hardest and it’s the most beautiful. So I have to imagine, since this promise you made to your mom that moving him into this assisted facility, how hard that decision was.

 

Robert Ingenito  24:20

It was, it was the worst decision I had to make. I just felt awful. I remember the day my wife and I were driving to this facility to sign the lease. You know, we’re heading down the Hutchinson River Parkway, and I say to my wife, I feel like I’m throwing in the towel. I really thought that I could keep this promise, that I could, you know, I would be able to keep him at home, and that he would spend his, you know, final days in our house. Um, and it just, it wasn’t realistic. It wasn’t possible. I couldn’t keep it up. There was a small pang of guilt. Well, let’s not call it small. There was a big pang of guilt there. You know, I don’t want to necessarily pigeonhole, you know, cultural stereotypes, but, you know, I grew up, you know, in this Catholic Italian Filipino household where guilt is a big thing. And this was a promise that I had made to my mom on her deathbed, right? Like.

 

SuChin Pak  25:36

If that isn’t the most Catholic Filipino, you know, immigrant mom thing to do, right? Like, out of a movie, yeah.

 

Robert Ingenito  25:46

But I just, I had to come to terms for myself. I had to come to terms, you know, understand, like, I’m a dad, I’m a husband. I there’s so much more going on here that I have to be aware of, that’s beyond just being a good son. It was hard. It was really, really hard, but amazingly, like after he moved in, after a good week or so, I was really impressed by like the socialization he was getting and the engagement he was getting from the staff and from the other residents, in ways, in that which I couldn’t have provided to him if he was at home, right? And that, to me, was like a wonderful surprise, just it made the decision a little bit better.

 

SuChin Pak  26:47

I feel like, as a caregiver, it’s so hard to ever make the right decision. Everything always feels like you didn’t do enough, the second guessing and the guilt, it just weighs you down, and it doesn’t help that we have so few real options for care in this country, especially when you factor in the cost of care, and then on top of that, the stigma many people feel around nursing homes. But Robert was able to move beyond that and realize that he wasn’t throwing in the towel. He was doing what he thought was best for his whole family. There’s something to be said for having the courage to make a change, even if it’s one you hadn’t planned on. After this short break, Robert talks about how his six year old is dealing with all the change.

 

SuChin Pak  29:31

Welcome back. After Robert moved his dad to an assisted living facility, he said the house felt empty at first, but the transition ended up being good for the family dynamic as a whole.

 

Robert Ingenito  29:45

It improved. It definitely improved. I think if you were to ask my wife and our daughter, right, like I was a more present father and husband for them, and I think we. In the times that I would visit with my dad, or, you know, take him out to a restaurant or to to our house for dinner, I was in a better place, right? I was, I was better able to, like, take on whatever the challenge was, because I had that rest and that respite, and I can come at things in a much, you know, refreshed way. But holy cow, the price tag on that is huge. Yeah, for the five months that he was there, he was paying around 11, $12,000 a month to be in that facility. And, you know, he was a doctor. He had, fortunately, the savings to do it, but it was expensive. And, you know, Medicare’s not paying for this, and you have to know, right? It’s only going to get more expensive.

 

SuChin Pak  30:55

So all of that was paid out of pocket, like none of that was covered by insurance at all.

 

Robert Ingenito  31:02

No, I mean, his doctor’s visits, the trip to the emergency room when he fell the medications that he was on, you know, that’s covered by Medicare. And he had, he had a good supplemental insurance that also would take care of, you know, whatever wasn’t covered by Medicare. But yeah, the assisted living facility, the rent that he was paying there, the fees that he was paying for medication review, for diapers, for the care that he was receiving, basically, that’s all out of pocket, and it’s, it’s really, it’s a big price tag.

 

SuChin Pak  31:47

This is something we heard from a lot of caregivers. Medicare just doesn’t cover so many of these costs. Medicare is a federal health insurance program for Americans 65 and older, it covers things like routine doctor visits, preventative care and hospital stays, but like we’ve mentioned in previous episodes, it does not cover assisted living facilities or other long term residential care such as nursing homes or memory care facilities. Medicaid, a joint federal and state program may cover long term care, usually in a nursing home, but only for low income seniors, and the demand is high. But despite the big price tag of the assisted living facility, Robert was grateful for the care his dad received. His dad stayed there for five months until he had an incident.

 

Robert Ingenito  32:45

He fell, he fractured his pelvis. We had to go to the emergency room at our local hospital, and after about four or five days, I could see, you know, this is not something that you can do surgery on. This is not something that he would be bouncing back from the way he bounced back from his other falls. And I talked to the doctors, I talked to the palliative care team, I talked to the social workers, and I said, look, I just want him to be as comfortable as possible. I want him to you know, whatever we could do to mitigate the pain, let’s do it. And if we can get him into a hospice hospital, I would appreciate it.

 

SuChin Pak  33:33

For people nearing the end of life, Hospice provides compassionate care focused on pain relief and providing comfort. Hospice also gives emotional support for the family.

 

Robert Ingenito  33:46

He was moved that evening, and I remember following the ambulance from the regular hospital to the hospice hospital. And it felt like again, you know this, you know, throwing in of the towel. And it was, like this last trip for him that I just felt awful about. And I felt, my God, I’m making these decisions for him, and I’m, I’m basically, you know, giving him a death sentence, right? Like when you say hospice care, you know this is, this is what it means. And when we got there, I remember meeting with the doctor, talking about the medications that he was on. He was on, you know, different heart medicines. And I said, look, I know where this is heading. Do we need to be on this heart medicine? And it was again, another difficult decision that I had to make, and we took him off those medicines, and about two and a half weeks later, he was gone.

 

SuChin Pak  34:57

Robert’s dad died at 93 years old. And when we talked about a month after his dad died, Robert was understandably tender. I could hear him contemplating the decisions he made in real time. I was so grateful he was open with me, because so many of us will someday be faced with very similar decisions, and they’re hard to make and talk about but Robert says he doesn’t regret anything about the care he gave his dad, including moving him to assisted living. Kids can be a great medicine through grief, and Robert’s daughter is no exception. She’s six years old now.

 

Robert Ingenito  35:39

She grew up knowing that this grandpa who was, you know, in his 80s and 90s, was not the same grandpa as, like my wife’s parents, who are now in their 60s, and so, you know, she couldn’t like play with him the way she plays with my In laws. You know, he wasn’t the kind of grandpa that could just, you know, get up and run around the house with her, or play, you know, make believe games with her, or for that matter, as I said, his hearing was really bad. Could hear her the same way, you know, that, you know, I could hear her. And so that was a major stumbling block, I would say. But there were small moments where I felt we could bridge that gap. And so sitting in his lap while he’s in the wheelchair, and we’re, you know, going across to the church garden across the street from our house, or riding in his lap as he’s going down the stair chairs. You know she would love that. Just a couple weeks ago, we had the stair chairs removed from our house, and I had, like, huge, you know, emotional reactions to that. And I learned from our daughter’s teacher that she too was crying in school because she knew that they were being removed and they were just this piece of equipment in our house that really made it so possible for him to live with us and to be part of us and to like for her, to share this memory with him, right that when we had to get them removed, it really like hit us in ways that we didn’t realize that. You know, it would be like that.

 

SuChin Pak  37:47

Have you thought about what you will say? Or maybe you’ve already had conversations with her about this time?

 

Robert Ingenito  37:56

With a six year old, right? You got to think about what is understandable for somebody this age. A couple weeks ago, she and I went to the cemetery. They had put up the stone my dad’s buried, or entombed, rather, next to my mother in mausoleum, and we found the two of them next to each other. And it, you know, when you go to a cemetery, right? It’s a sad time, but when you go with a six year old, like there’s a certain levity to the situation, like we were taking pictures of the stone, and my daughter’s like kneeling next to her grandma and grandpa their names, and she’s smiling and kind of being a silly, you know, little six year old. And I don’t know, I felt like this is nice, you know, this is actually a really nice experience to be having. And instead of, like, coming to the person’s grave, and, you know, you’re going to feel sad, of course, right? Like that’s that’s a given, but to go to the grave and be with someone who is just have such a light heart and a light, you know, spirit, it’s it’s a great learning experience for me, yeah.

 

SuChin Pak  39:32

Robert’s story reminds me that when they say caregiving is a journey, it’s really true. You can go from helping your parents here and there to moving them in, and then eventually you come to lose your loved one, and that will continue the journey in a whole different way, feeling that loss, but also feeling lost yourself. I was imagining all these things, sitting with Robert and seeing his grief. I think in the end, when you’re caring for a loved one, you just want to know that you did all that you could, you loved as well as you could, and that those last years were met with dignity and care.

 

CREDITS 40:24

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.