17 I Caregiving and Family Pt 2: The Realities of Caring For Children with Disabilities

Erica spent her childhood living with a disability and needing a lot of care from her mom. As an adult, she’s now the caretaker to two children with disabilities. In this episode, Erica talks about what she learned from her mom as a caregiver, the day to day realities of caring for children who need a lot of assistance and how that impacts her career, her marriage and her finances. 

Check out Erica’s newsletter at Caffeinated Caregivers.
The song featuring Erica’s musical saw was Solar Eclipse by Jenny Johnson.

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Episode transcript is below. Transcripts may not appear in their final form.
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Julia Winston: I'm Julia Winston and this is Refamulating.

In our last episode I introduced you to Kathleen Downes, a 31-year-old woman with cerebral palsy. Kathleen and I talked about how caregiving has impacted her life, especially when it comes to family dynamics because Kathleen receives a lot of care from her family. 

Kathleen Downes: My parents and I are very intertwined. And sometimes that's a scary thing because you have an outsized level of terror about what will happen when they die. 

Julia Winston: I learned so much from Kathleen about what it’s like to be a recipient of care and about how we treat people with disabilities in the United States. It’s important to talk about caregiving in the context of families, because most people can’t afford to pay for care, so family members often end up stepping up. In fact, 20% of all Americans are playing a caregiving role for a loved one, like an elder or someone with a disability. This topic is relevant for a lot of people.

So after talking to Kathleen, who receives care, I also wanted to talk to someone who is giving care, to learn about that side of the experience. Kathleen suggested I call her friend Erica. 

Kathleen Downes: So we actually met online because she runs a page called Caffeinated Caregivers that talks about, you know, caregiving issues. She has two children that are developmentally disabled. 

Erica Stearns: My name is Erica Stearns, and I am 39 years old, and I live in Southern Illinois.

Julia Winston: Erica has a particularly unique perspective because she has been on both sides of the caregiving equation. As a child she had a medical condition that required constant caregiving from her mom, and now she's a caregiver to her two kids, who both have disabilities that require constant medical care. 

Erica Stearns: To me, I've only ever known caregiving to be a form of love. I think it isn't often portrayed as that in today's society, but my entire life, love has repeatedly shown up in the form of care and as a parent, a very, having very unique parenting experience that intersects with being a caregiver on a daily basis. Caregiving is the way that I show my kids love, just one of the many ways, but a very important one.

Julia Winston: So today on Refamulating, we're going to hear Erica's story of receiving care as a child, and providing care as an adult. 

Erica Stearns: so I was born in the mid 80s with a condition that's considered a congenital birth defect where there essentially were holes throughout my airway and digestive system in really critical places. That unfortunately meant if I had ate or drank, that would go straight to my lungs, and it did, and that's how they found out that I had the diagnosis of non isolated tracheal esophageal fistula and atresia. And, you know, nowadays, medical technology has advance substantially. But in 1985, that diagnosis was terminal for many children. So for me, what that looked like was that I required the use of a tracheotomy and a G tube, until the age of 15. And I've had about 32 surgeries in my life.

Julia Winston: Erica’s G tube was a tube that ran directly into her stomach so she could get supplemental nutrition. Having a G tube meant that Erica didn't have a lot of independence as a child, she needed a lot of care. 

Erica Stearns: Unfortunately, in 1985, we didn't have the kind of systems we do today, nor the medical technology for someone like me to go home and live independently right away. So I spent a lot of time growing up in the hospital, especially if I needed any sort of mechanical ventilation. I had paralyzed vocal cords as well. So unlike seeing a child cry or hearing a child cry, my mom didn't have the luxury of those sounds. So she was really creative. She, I was a child who grew up with bells attached to my wrists and my little booties so that if I was making the movements of crying, she would at least be alerted.

Julia Winston: Erica’s mom was a caregiving role model for Erica. And one thing she thinks her mom did really well was build a big community around them.

Erica Stearns: So my family, my aunts, my uncles, my grandparents, they never really made me feel different or othered. This was just me. This was just my journey. I didn't really even know it to be different. I didn't really think of my life as being pitiful or tragic or really that different. I was celebrated as who I was.

Julia Winston: When Erica was 15, doctors were able to remove her trach tube, a device that was inserted into her windpipe to help her breath. 

Erica Stearns: That has not been the end of my medical and disability journey, but it did, have an interesting effect where it moved me from this category of being, very visibly disabled to being non visibly disabled. In fact, most people really don't know that I have a disability now until they hear me talk. And then, typically they assume one of two things, that I'm either a chronic smoker, or, which I'm not, or I have a cold. 

Julia Winston: When the trach tube was removed, Erica was able to live a different life than the one she’d known in childhood. She didn't need constant care anymore, so she gained more independence from her mother and other caregivers. But she wasn't free from her illness.

Erica Stearns: I think the scariest part for me is that they really don't know why my vocal cords are suddenly, working on their own because they were paralyzed, uh, the majority of my childhood. So they really don't have any idea how long that will sustain itself. So I remember at 15 being told, okay, we're going to do this surgery, but you do realize, like, you might have to have a trach again.So that's terrifying. And I think because I had this like weird, I don't know if I'm going to live for very long or if I'm going to have this voice for very long. It just really shaped my drive and my passion to first adventure and do as much as possible with my voice and with my life.

Julia Winston: Erica spent her 20s adventuring. She didn't finish college, instead she traveled, dated to have fun, not to settle down, and she leaned into her love of music. 

Erica Stearns: So I play the musical saw, I can play a number of instruments, but that is the instrument that, I really, grew to love and identify with because I like to call it, it's like my voice. It's the voice that I imagine I would sing with if I had not had paralyzed vocal cords. It's a very ethereal, feminine sound and I play it in such a way that I harmonize with either the other instruments and or the lead singer.

I got to play music and travel the country. music and art, it really led me to where I am today through music. I landed in Southern Illinois and I met my husband Randy and we fell in love through music and Star Trek and video games and It was like we had so much in common. We could just talk and laugh for hours and I really just, I found my best friend and then we decided to become parents and it was so exciting because You know, I thought, how cool would it be if our kid liked Star Trek and video games and music. What a cool kid that would be. That's like what you think in parenthood, right? Like what are our genes going to create? It's going to be this awesome combination of two amazing people, right? 

Julia Winston: Erica and her husband did get pregnant, and they were thrilled. But like many first time parents, she was also scared of what could go wrong. Her own experience of being born with a medical condition had her worried that something similar could happen to her child. 

Erica Stearns: And I remember at some point in our journey about midway in pregnancy, we had an ultrasound that came back indicating that our daughter might have a smaller head circumference than what was normal. And that obviously scared us, and we didn't really know what that meant. But in the follow up appointment, our doctor was like, she's down low in your cervix. It's, these measurements are not always accurate, so we'll just keep an eye on it. So we had some follow up appointments and towards the end of her pregnancy, that's when the doctor finally conveyed that the head size was not growing. She was falling off the charts. And when we asked, you know, what could we do to get more information and like, really prepare ourselves, we were told that it was just kind of too late to start preparing ourselves.

By the time You know, I was in my 36th week when he finally really sat us down and told us the reality of what was going on. 

Julia Winston: They didn't know it at the time, but Erica's daughter, Margot, would be born with a rare genetic condition that’s so rare there isn’t a clinical name for it. One of the symptoms is microcephaly, which means she was born with a much smaller head than what is typical for a newborn, which can cause seizures, delayed physical and mental abilities, and problems eating or swallowing. 

Erica Stearns: So when my daughter was born, I could tell instantly that something was wrong. And I think that is probably the worst feeling to have and one of the worst things to admit because I never want to put my daughter in the category of wrong. But that's what it felt like at the time. She didn't cry when she was born. She didn't have much tone or many reflexes. She was having seizures, really aggressive seizures, seizures so bad that she couldn't eat. And when I voiced those concerns and when I voiced the fact that I could recognize that these were seizures, I would say I was told, oh, don't worry. Those are normal newborn baby movements. And for 12 hours, I had to hear so many medical professionals go, Hmm, I don't know. Those just kind of look like normal newborn baby movements. But I knew. Something just primal that told me she's not okay. You need to fight for her. So fight I did, and it wasn't pretty.

Julia Winston: At one point, Erica’s daughter had a massive seizure when the doctor was checking on them. 

Erica Stearns: And from that point forward, things moved pretty quickly. We were sent to a different facility, sent to a different hospital, a more advanced hospital that was able to really support her and provide the type of testing and type of expertise that she needed. We also underwent genetic testing. She went through a lot of really invasive and painful testing to try to determine what the cause of her symptoms were. And we remained in that NICU life, is what they call it, for several months.

And eventually we were able to take our child home. And what that looked like was really learning so many things. being with her at the bedside every day in the NICU. Learning how to read the monitors, learning how to read her. learning to determine what is a seizure versus what is dystonia, learning how to feed her, because she didn't really have very strong oral suck or skills, learning how to love her. She had a lot of tubes and wires, and so just getting skin to skin time was really, it was challenging, but it was something we were motivated to do because we just wanted, we wanted her to know love.

Julia Winston: It would take Erica and her husband a year to learn about the ultra rare genetic condition that caused Margot’s microcephaly. During that year, they spent a lot of time with doctors searching for answers. And in between hospital visits, when they were at home, they started learning how to provide care for Margot.

Erica Stearns: At this point, we didn't really know what Margot had because her genetic testing came back, null. they couldn't really find anything. But we knew that in the world of genetics, I think we at this point, the current landscape might be three to five percent of what we know when it comes to what genetic mutations exist. And so by the time we went home, we were her experts. We still had a lot to learn, but we knew how to love her and how to support her. And we also knew, to some degree, that our care for her would have to evolve as she grew and changed and as her medical complexities, you know, manifested in different ways throughout her life, that we would have to really stay on top of that and, and continue to be her experts, which is somewhat ever evolving.

Julia Winston: When Margot was a little over a year old, Erica got pregnant again, which was a surprise. 

Erica Stearns: We were not totally ready to have a second child while still learning how to be the best parents for Margo, but we just went with it. We kind of felt like we always wanted to have multiple kids, so if we were going to do it, might as well be now. We also felt so scared, and we felt so afraid of people's opinions, and how people might perceive us as being irresponsible for bringing another child into the world, despite having a very medically complex child that required many resources. 

Julia Winston: They had a lot of worries about this second pregnancy. Like Erica said, she worried people would look at them as irresponsible, bringing another child into the world when their daughter already needed so much care and resources. They also worried about how they would juggle two kids when one already needed so much care. And of course, they worried this baby could be born with the same condition as Margo.

Erica Stearns: We did not know what we would do if we found out he had the same condition as Margo. We very much were comforted by the fact that we would have choices. Because we knew that Margo's care was so intense and that we were essentially unsupported. We had to leave our careers. We had to, I mean, we were living on so little financially and utilizing, you know, again, support and resources that we never imagined having to utilize. And also just witnessing Margot go through so much, I mean, so much. And her first year of life was so rocky, so many moments where she was life flighted to receive critical care. I just, we didn't know if it would be fair to put another child through that. And so having a choice gave us so much comfort.

Julia Winston: They had a choice because Erica and her husband live in Illinois, where abortion care was available to them. They didn't really want to share the news that they were pregnant until they had a full MRI done on the baby to see if its head was growing at a normal rate. 

Erica Stearns: Ultimately, we were told our child was healthy and that he didn't appear to have any of the same markers as Margo had, now that we knew a little bit more about Margo. And so we proceeded to carry our pregnancy to term. 

Julia Winston: Once they had those MRI results, they expected to have a totally different experience with the birth of their son. 

Erica Stearns: And we received the second shock of a lifetime, when he was born with the exact same presenting conditions. And to this day, I will tell you that I don't know what decision we would have made if we had found out that he had that condition when we were 20 weeks pregnant. I mean, I don't even know what options you have at that point. And I'm willing to take judgment for that, but I'd really ask people to put themselves in our shoes. Because we loved this child, and we loved him then. But we also saw how much pain our daughter was put through. And we had no idea how long she would live. And we had no idea if we could do this times two. It's so much. The number of doctor's appointments, the numbers of hospitalizations, the number of people it takes to care just for her, we didn't know how we would do that multiplied by two.

I can tell you now that I am so glad that Caratekus is who he is. That's my son, because he really brought so many answers with him because of him being born with the same exact presenting conditions. We were able to have researchers at Yale isolate their genes and determine where that genetic mutation spawned from, and because of that, we have answers for other families around the world. 

The other side of this is that Caratacus ended up not having to have as painful or traumatic or turbulent beginning of life because his sister had paved the way for him. And we knew what worked for her, so we didn't have to have a lot of the mystery trials and challenges.

And he's also taught us a lot about our kid's conditions. Many of the things that we thought were maybe developmental delays for Margo or a part of her medical condition, we learned it's actually just a part of her personality. She does not like to perform for people. She's not, overly emotional or expressive, she's actually quite serious. Our son, on the other hand, is a performer. He is overly expressive and actually brings out a different side of her. We've learned she's very protective of him and she's very much observant of what other people are doing to him.

Julia Winston: So now, Erica and her husband are caregivers to two medically complex children. And as we learned in our last episode with Kathleen, families who include people with disabilities don’t really get much help. The way it works in the US is that the family has to provide most of the care, and figure out a way to pay for all the medical needs. 

Erica's kids are now 8 and 6. Even though they've been able to learn more about the kids' rare genetic condition, they still need constant caretaking.

Julia Winston: What kind of care do they need? 

Erica Stearns: Margo and Karatakis, they require full care. So they are unable to live independently or eat independently. And at times they need a lot of respiratory support to breathe. So that looks like helping provide not only the daily hygiene care, such as bathing and feeding and changing, but it also means that in order to You know, get them into comfortable positions we are lifting and moving their bodies and utilizing different mobility aids to keep them comfortable and keep them in alignment and keep their bodies supported. It means that they require what we refer to as a cocktail of medications to keep their seizures at bay and to keep them healthy and to allow them break from seizure activities so that they can develop and enjoy the world. It requires constantly coordinating with medical teams, charting, keeping really meticulous notes on changes in their health status. It could be as simple as, were they very sleepy and did their respirations, decrease significantly to something more obvious such as they were having grand mal seizures or they were up all night puking.

So, yeah, it's kind of like having a field hospital in our home. So, we very much live with medical equipment as a part of our decor. We don't spend a lot of time outside of our home because we have found that it's just, really inaccessible to take a lot of those devices and our children out into the world that really isn't designed to support people who require a lot of technological support in order to live. And even like at a more basic level, living in Southern Illinois, the majority of places are not wheelchair accessible. The majority of places, in fact, I don't know of a single one in a two hour radius that has an adult size changing table for our children to just do what humans do regularly, which is use the restroom.

Julia Winston: And what kind of care will they need in the future?

Erica Stearns: There are no adults living with their rare disease. We've kind of always been told and under the impression that our children may not reach adulthood. At the very beginning of my daughter's life, we were told we would be lucky if she lived to see childhood. So, you know, it's just kind of been one step at a time and having grown up and really kind of survived against the odds, I Maybe that influenced me into really, like, not fully taking doctors seriously when they said things like that because, I mean, they said that about me. They said I'd never be able to talk or eat on my own or breathe on my own. And here I am doing those things. But I also have to acknowledge that, like, I'm very lucky and I don't have the same, cognitive disabilities, intellectual disabilities, physical disabilities as my children and, and we just don't know. So we just take one day at a time.

So, as a family, we've really kind of made priority in balancing their quality of life, and make our home as much of a fun place and an oasis as it can be, so that we don't feel like our kids are missing out on experiences that could be happening outside of our home, if that makes sense.

Julia Winston: How have you turned your house into an oasis? And what do you like to do

Erica Stearns: Yeah, so we actually, my husband and his father, they built, um, what we call our kids accessible wing on our house. So they have a room and a bathroom that was designed just for them and all of their needs. We also made it so that our kids had their own outdoor space where they could watch all the wildlife that tends to grace our forested property. My husband is an avid gardener, so we have a flower garden right outside of their windows, their bedroom windows, but we've also planted it in such a way that they can have easy access to the flower garden. And the flower garden brings so much too, right? We have caterpillars that get to crawl on their arms and butterflies and snakes and frogs and lizards. And my daughter absolutely hates this part, but we let them touch all those critters and just really kind of, you know, I guess replicate what I imagined Snow White and the Seven Dwarfs had. It's just cottagecore life. 

Julia Winston: Redesigning their house is just one thing Erica and her husband had to adjust in their lives to accommodate their kids' disabilities. They also had to reframe their expectations around what parenting and having a family would look like for them. 

Erica Stearns: I think we had imagined as musicians that we would have our kids out at concerts and we would be taking them to art shows and we would really be out there doing more creative community centric activities. And I think that has been a part of this journey that we have really grieved is that we just haven't been able to do that.

On one hand it's lack of accessibility in those spaces, but the other side of it is that a lot of times that kind of stimulation results in seizure activity and it really puts our kids at high risk for, you know, contracting. a virus or illness. And we've just learned over the years after our few attempts of doing things like that, it ended up resulting in prolonged hospitalizations. And again, touch and go moments where we Where our child's life really hung in the balance, and we decided that's not really worth it.

Julia Winston: When we come back, Erica opens up about finances. 

Julia Winston: I'm curious to hear a little bit about the financial realities of your life, having children with the disabilities that your children have. What are the financial implications for your family?

Erica Stearns: Yeah, I think this is an important, um, question and I think it's one that, many years ago I had a lot of shame surrounding it to answer because, again, our society really measures success based on things like material items and and honestly our income. So for a while, the fact that I was happy, so happy being a mom and so happy having my child at home and alive, I felt quite ashamed, like I had in some way failed because, I had to give up my career in order to care for my child. Unfortunately, we don't have a system where there's, you know, daycares who are equipped to care for children who have feeding pumps and seizures and, and really need extra one on one support.

My husband and I, we both came to a relationship with our own independent income and career paths, and that quickly had to change following the birth of our daughter. Um, my husband's job kept him traveling a little bit every day, pretty far from the home. And there were a couple of incidents in Margo's first year of life where we didn't know if she would live.

We had to rush her to the ER and I had to watch some pretty scary things happen, including her being sent off in a helicopter three hours away to a different hospital. And the fact that my husband could not be there with us in that moment was really, really hard on him. So, in order to be closer to home, he took a different job that was paid significantly less. And to him, that felt very much like a step down. But, As far as our lives were concerned, it was a step up. It allowed us to be closer. you know, He had a job that was more understanding of our family circumstances. 

Julia Winston: Not long after Margo’s birth, Erica found out her family qualified for Medicaid, which offered more caregiving coverage than their private insurance. Medicaid is for low income families. When they started their family they didn’t qualify because both Erica and her husband had jobs. But after Margot was born, Erica left her job to take care of Margot and they’d spent all their savings on medical bills.  

Erica Stearns: At one point following my daughter's NICU stay, I actually requested all the medical bills, and they were over a million dollars. And we were trying to figure out how we could manage this life financially, because Insurance, we knew was not going to cover everything that our daughter needed, but we had pretty good success with Medicaid. And while it is not ideal, there are definitely a lot of improvements that Medicaid needs to make. It did a lot to support her and us. 

Julia Winston: But there is a cost to that support. Medicaid is the best option because most private insurance companies will not cover all the care someone with a severe disability needs. They usually won’t even cover some of it. So Medicaid has the best coverage, but it’s exclusively for low income families. Which means families who are not low income have to choose to be poor so they can get the care they need. 

Erica Stearns: And, you know, that really put us in a bind because the alternative is me leaving my daughter in the care of someone who is not, at that point, was not, we didn't have things like home health nursing because, again, Medicaid provides home health nursing, so if I returned to work and made more money, then I would essentially lose the skilled nursing support that Allows me to even go to work and earn that money. So it was such a catch 22.

Julia Winston: Erica and her husband had a very clear line they couldn't cross. When their kids were first born, they couldn’t make more than around 45 thousand dollars a year to stay on Medicaid. So neither she or her husband could advance in a career or have a side hustle to save, or take themselves on a vacation. In the last few years, things have started to change for the better.

Erica Stearns: Fortunately in our state of Illinois, They were considered eligible for waiver status, which essentially meant that having a Medicaid waiver in the state of Illinois, they would not count the parent's income against my kid's eligibility. And that happened only, I think almost two and a half, three years ago now, and that was a really, I mean, that was a transformative moment because suddenly, because they were eligible for a program that didn't count our income against us, we were finally able to look at options like returning to our career and not living under the limitation of, a substantially limited income.

Julia Winston: Erica recognizes she is lucky because she lives in Illinois, a state that passed legislation creating this waiver program. But a lot of states don't have this waiver, and families have to stay poor to get their kids care. 

Erica Stearns: And some people might ask, well, why didn't you just go and get private insurance? And again, I want to remind them that most private insurance companies do not provide home health nursing. And that's really what our children needed. So the option was put my children in the care of an unskilled individual so that I could be away for eight hours a day to pay for a private insurance that as I know, very well does not cover the majority of the needs that my children have, or stay home and just learn to live with less.

We couldn't go off and buy a home. We couldn't go off and buy a new vehicle. We didn't really have the resources for that. We had to utilize not only Medicaid, but we utilized Social Security Income, which is another program that is so beneficial for not only families of kids with disabilities, but also people with disabilities. And yet it's a program that has not been updated in over 50 years. So 50 years ago, they decided that a family could have at least 2, 000 in assets, and that was pretty substantial for 50 years ago, you know? 

And this day and age, $2,000 is not enough enough of a security for families. $2,000 that asset limit includes things, not just what you hav e in your bank account, but if you have another vehicle, any other, you know, big tag item things that you might have, if you, even if you have a john boat, you know, they're going to count that as an asset. 

Julia Winston: The waiver meant they could make more money, have more assets, and still get Medicaid. Another thing that changed in Illinois in the last few years is that the state will pay a family member performing caregiving duties. These policy changes allowed Erica and her husband to re-evaluate their careers and caregiving situation.

Erica Stearns: My husband is a veterinary technician. And I was an optician and I ran a small eye doctor's office. We kind of went back to the drawing board and we both realized as caregivers, We were not the same people that we were at the beginning of our careers. We have learned so much. I often tell other caregivers, you can't unsee or unlearn what you now know. It's all a matter of figuring out how to use that in your life. And, and determine how you want to use that knowledge. For me, I decided I wanted to use that knowledge to help other caregivers.

For my husband, he decided he wanted to become a nurse, and the primary caregiver. That's kind of atypical for a lot of family dynamics, but my husband is a very, very nurturing person who is actually quite a natural caregiver. And I think moving from finding a vein on a chihuahua to finding a vein on a human is going to be pretty easy for him. So nursing kind of felt like the natural progression for him. And it meant that the care that we're doing overnight, the hours that we have available for nurses that we can't fill, he can get paid to fill those because we're already doing the work regardless.

Julia Winston: So he's being paid to care for your children.

Erica Stearns: he will, once he is complete in nursing school. There are some states that currently pay caregivers who don't even have a nursing degree. Unfortunately we live in a state that's not quite there yet.

Julia Winston: These kinds of policy changes not only give Erica's family a financial break, but it allows her and her husband to have lives outside of caregiving. With her husband as the full time caregiver, Erica wanted to spend more of her time doing advocacy work and interacting with more families like hers.

Erica Stearns: since becoming a caregiver, I've been very passionate about finding ways to help caregivers feel validated and normal in their experiences. And one way that I do that, I do this for the state of Illinois through a program that is designed to, provide care coordination services to children with medical or medically fragile and technology dependent. I get to interact with parents early on in their journey with caregiving and really welcome them to the community and give them what I like to think of as the holy grail of resources that I didn't necessarily get at the beginning of my journey. 

Julia Winston: She also created a website called Caffeinated Caregivers, where she and her collaborator Alyssa Nutile write about what it's like to receive care and share resources for caregivers. Being able to have time for her own passions is something she and her husband have tried to always make a priority. 

Erica Stearns: It's, and it's such a relief to have that as a parent because I don't always want to be a nurse. I don't always want to have to do what often feels like the painful or mean things to my kids.  So, having someone else come into our lives and give us that respite, give us that break from being the person to always do the medical stuff. The break where I just get to go downstairs and be mom. That is where home health has greatly improved our lives. Not only has it allowed us to play just the part of mom and dad while they're here.But we also get to do things outside of caregiving that help us to really re identify with ourselves because I firmly believe that our kids need that too. Our kids need to see who we are as people outside of caregiving so that they can have those examples of being people as well.

Julia Winston: When Erica was a child with a lot of medical needs, she remembers seeing her mom get lost in sewing projects, and how happy that  made her. 

Erica Stearns: She was doing it, any chance she got when, whenever she had a break from me, I'd sneak in the living room and I'd see her sewing and I'd see her in her zen. And now when I sew, I feel connected to her through that. So for my kids, when they see, uh, Me doing my work or they see their dad and me playing music or video gaming. We like to do that too. They get to see us in our zen, and maybe it will help them feel connected to us when they grow up to discover their own versions of that for themselves. It's hard to say, but I think that part of being a parent and a caregiver is really important to, to balance and include in your life.

Julia Winston: This season, we've been toying a little bit with the idea of utopia. We talked about it extensively in episode 11, challenging ourselves to imagine what life could look like if we focused more on fulfillment than achievements. When you really step back and dare to dream, what’s your ideal way to live? To parent? So I asked Erica, what would her ideal, utopian, version of care look like? 

Julia Winston: If you could dream of a world where life was easier and where you think life was better for people who are in positions where they're giving and receiving care, what would you want to see be?

Erica Stearns: An ideal world for my family and for me it would be the elimination of barriers and total access to things like health care and support. And I don't just mean Healthcare support, I mean, actual physical, emotional, mental support as well.

Throughout history, we have moved from a very communal society to one that is very individualized, and yet our healthcare system has moved towards the concept of community care. So, Everything about healthcare now is really focused on getting the patient out of the hospital and back into their community, and that's great in theory, but it's absolutely unrealistic in practicality, in reality, because when you go into their community, There are so little resources and financial support or financial incentive for someone in your community to step into your lives and help you to provide that community care. 

I think there's a very big misunderstanding and gap between medical professionals and the hospital, really supporting you and teaching you how to be a support provider and caregiver and then sending you home and just essentially being like, okay, figure it out, figure it out without any compensation, figure it out without any, anyone to give you a break.

Julia Winston: Utopia for Erica also looks like more people caring about caregiving.

Erica Stearns: Evelyn Carter. jimmy Carter's wife. Right? Fact check me. 

Julia Winston: Her name is Rosalyn Carter and she was a staunch supporter of caregivers.

Erica Stearns: she said it best when she said that, you know, Everyone, at one point in their life, will either be a caregiver or a recipient of care. And I don't think any one of us really take that into account until we are forced to. And then that experience tends to really shape you to the extent that you look at life and systems differently. Whether it is you're caring for a parent, or you're caring for your child, or you're receiving care yourself. And I would ask our listeners to not wait until that moment to really start thinking about the concept of care, giving or receiving, and how it impacts, or could impact you, or is impacting your neighbor, or your family member, or your friend. And ask, ask those people in your lives, if you have them, what you can do. It might just be as simple as a phone call to your local legislator. It might be a meal. It might be, hang out with me and have a glass of wine and let's not talk about it at all. It might be, don't view me as a person who needs care, just view me as me.

16 I Caregiving and Family Pt 1: What It's Really Like To Receive Long-Term Care When You Have a Disability

In this episode we meet Kathleen Downes- a 31-year-old woman who lives with her parents and dog in New York. Kathleen has cerebral palsy, which means she needs constant care to do daily activities. Kathleen talks about the complicated relationship between care recipients and their families, the broken policies that force impossible choices, and the radical act of finding joy despite a system designed for isolation.

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Episode transcript is below. Transcripts may not appear in their final form.
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Julia Winston: I’m Julia Winston and this is Refamulating, a show that explores different ways to make a family.

When we started planning this season, we knew we wanted to do a story on caregiving. A friend who had been a caregiver to her father suggested it, and we liked the idea since so many families deal with caregiving at one point or another. 

Our original idea for this episode was to feature what it's like to provide care for a family member. That’s what we were looking for when we did a call out on social media. 

Kathleen Downes: I am a 31-year-old lifelong care recipient with cerebral palsy. I have always needed near total assistance with all activities of daily living. 

Julia Winston: This is Kathleen Downes. She lives in Floral Park, outside of New York City, and she emailed us after seeing our Instagram post looking for people who deal with caregiving. 

Kathleen Downes:I saw on IG that you were looking to talk about how caregiving shapes families. I rarely, if ever, see care recipient narratives told although needing care shapes my every relationship both with my family and my paid caregivers. All of my ideas about what a family can look like for me are also shaped by this reality given that I can’t marry or cohabitate without risking the benefits that fund my care.

Julia Winston: When we heard from Kathleen, we realized how important it is to center the experience of receiving care, as well.

Most of us avoid the topic of caregiving. Think about it, when you picture your life's last chapter, what do you imagine? Is it you and your partner, gray-haired and holding hands on your front porch? Or maybe it's living in a fabulous house with all your closest friends, trading jokes like the Golden Girls. Few of us imagine spending years with limited mobility and depending on others to make sure we eat and use the bathroom. 

It feels scary, but here's the thing – if we're blessed with a life full of deep connections, giving and receiving CARE is going to be part of our story. And not just in our later years – it shows up throughout our lives in all sorts of ways. Sometimes it's the care we expect, like having a baby or helping aging parents. Sometimes it's unexpected – an accident, an illness, a child who needs extra support. This is all just part of being human, we all have bodies that will eventually break down. When it comes to giving and receiving care, it's not a question of if, but when and how.

Right now, one in five adults in the United States is caring for a loved one – that's 20% of us stepping into a role that nobody feels totally prepared for, but one that represents some of the deepest expressions of love we can offer each other. 

Another reality of caregiving is it often falls on family members to do it. It’s expensive and logistically difficult for most people to get outside help, so caregiving often ends up having a massive impact on family dynamics.

Kathleen Downes: we have a real culture of fear and disdain towards needing help with things, especially in America. And there was sort of that realization that I represent, some people's worst fear for themselves.

Julia Winston: Today's story looks at caregiving from a perspective we don't often hear – what it's like to be on the receiving end. As you listen, I invite you to notice your own reactions. Where do you feel resistance? What makes you uncomfortable? Because let's be honest – caregiving can be scary to think about. 

But when we open up these conversations, when we make space for all kinds of care stories to be told, we're doing more than just sharing experiences. We're helping build a society that's more honest about what it means to care for each other, and maybe even one that's better equipped to support us all when we need it most. 

Kathleen Downes: I have a brain injury that occurred at some point in utero. So Basically, cerebral palsy is the functional consequence of that brain injury. the communication between my brain and the rest of my body is, you know, not wired correctly. I have very limited movement. Um, And I have a lot of spasticity, meaning that all of my muscles are unnaturally tight.

Julia Winston: For Kathleen, this muscle tightness means she often feels like she's fighting against herself. Because of that she mostly moves around in a power wheelchair and needs help doing most physical activities. 

Kathleen Downes: So getting dressed, going to the bathroom, taking a shower, setting up food. Um, I have some use of my hands, but not enough to, um, you know, complete most tasks independently. the CP, it's been a huge shaping factor in the person that I became. So I don't. I don't really see my CP as a, um, you know, as a positive or a negative. It's just something that is, like, you know, like my hair color or whatever. Obviously it has a much bigger impact on my life than my hair color and it shapes everything. But it's not something that I see myself as battling against or, you know, an opponent of any kind. 

Julia Winston: This is Kathleen’s relationship with her disability. And I wanted to know, what was her relationship like with her family? 

Kathleen Downes: I live with my mom and my dad and then I have an identical twin sister whose name is actually Claire, um, and she lives in Manhattan, and I have Um, and an older sister. She lives outside of New Orleans in Louisiana. 

Julia Winston: What have your relationships with your siblings been like through the years when it comes caretaking and the roles they've played or just in general,

Kathleen Downes: They never provided much physical care to me growing up. I don't think my parents ever wanted them to feel like they had to be the physical caregiver. But having a twin is a lot of fun, and contrary to what a lot of people think in, in popular culture, I'm sorry to say that we don't have   . but it's also hard sometimes because you're pretty much seeing an exact parallel life, like, she looks exactly like me, but walking. So it's complicated. 

It's hard sometimes to have somebody who's my exact age, but able bodied, and I want all the best things for her, and I want her to do all the things that she loves, and I want her to go get the job, get the apartment, get the cat, do everything, because she's the best. But at the same time, it's very difficult to know that she has her own apartment, and a job that pays enough to live on her own and she can travel on her own and choose where she wants to go. And knowing that there's only one thing preventing that from being the truth for me. And I'm sure she feels sad about that sometimes too. 

Julia Winston: I want to learn about your experience being the recipient of caregiving through different stages of your life. Starting when you were a child, did having a disability and needing care make you feel different? What was your relationship to these circumstances when you were a child?

Kathleen Downes: I've never known a life where I didn't need an extreme amount of help. So it's not like there was ever a time that I was completely independent. But when you're a little kid, it's less isolating because everybody is being taken care of by their parents.

And then when you start to hit like, you know, middle school especially, and people are starting to become physically independent and obviously they're dressing themselves, they're going to the bathroom on their own, they're doing all that on their own and you're not, that's sort of, I think one of the first big realizations that you, you're not like everybody else .

And at some point, My life really diverged from my able bodied peers because I still needed help with all the other things that they were able to do.

Julia Winston: What was Caregiving like for you when you were a child and then what was it like to receive care during puberty? And when you became a teenager.

Kathleen Downes: So when I was little, it was mostly my parents. Yeah, and then in elementary and high school, I had, like a one to one caregiver in school But when you're little, it's much easier to find people who will do it because you're physically easier to move. You're cute. you're not bothered as much by having a person glued to you. And then when you get older, when I hit high school, it's like I started to not want somebody attached to me because it really drives people away from talking to you. When you have, like, this adult just there all the time. The average tenth grader does not want to talk to you if you have, like, you know, a middle aged mom following you around and it's It's a real skill to just learn how to be a shadow and essentially act as a person's arms and legs without interfering with their ability to make choices, even if those choices are bad, without interfering in their conversations. but a lot of my aids in high school, they just didn't know how to do that. T hey would butt into my conversations or they would, you know, just be too there. 

Julia Winston: Kathleen and her parents struggled with the aides she had in high school. Some were too involved, but others were neglectful, leaving her alone so they could take a call or talk to other adults in the school. Some refused to lift her up and many just didn't give her the physical support she needed.

Kathleen Downes:Sometimes they just wouldn't even show up. which part of me loved because I would just sneak around on my own. But, you know, sometimes it was a real problem. It got to the point where I stopped drinking in school because I just wanted to dehydrate myself as much as possible cause it was just, I felt it was easier for everyone if I just didn't pee because it was like, well this person's gonna drop me, this person really doesn't want to do this. and it's just easier for everybody if I don't. So I would come home, like, enormously dehydrated. It was almost like an eating disorder, but with fluid.

Julia Winston: The aides at school were Kathleen's first experience in realizing just how much of her quality of life depended on the quality of the people taking care of her. So after high school, she wanted to go to college like other students. But she also knew she'd need constant care- which made the college search more specific.

Kathleen Downes: I knew when I graduated high school that I didn't want to the only visibly disabled person in the school anymore. It was too hard to do that again because everybody knew who I was, but nobody actually knew me. I always equated it with being like a mascot. It would be like, oh, everybody knew like, yeah, that girl in the wheelchair, but very few people meaningfully engaged with me.

Because even when I didn't have the aid on top of me anymore, when you need care, you just get left out of things. Because teenagers start driving on their own in inaccessible cars, and they don't want to wait for you, for your mom to drive you in your accessible van so you can meet up with them. And then, it's like, no, no, no, no.so I specifically sought out a college that was disability friendly, which is surprisingly difficult to find, especially for physical disability.

Julia Winston: Kathleen ended up enrolling at the University of Illinois at Champagne because it has a specific program for people with physical disabilities. One thing the program offered was accessible dorm rooms on the first floor.

Kathleen Downes: So we lived in a regular dorm with the other kids, but, but our floor was like wheelie land and the students could get a job to take care of us.  and all of a sudden my parents were 900 miles away, so if somebody didn't show up, it's not like I could just, you know, call them and have them take over. Um, And in retrospect, it was really, it was really selfless and courageous of my parents to let me go, because I know that it must've been hard for them to, to let go. Because sometimes there would be times where somebody didn't show up and I would have to find a sub at the last minute or somebody would abruptly tell me they were going home for the weekend and I needed to find coverage for the shift. 

It’s the hardest thing. I've ever done it , because it's like running a softball team while you're also going to school. It's like the eternal group project, except the group project never ends, and you, you are the group project. Like, if somebody doesn't show up the consequences you don't get out of your bed.

Julia Winston: Kind of like building a plane while in flight, these student caregivers were learning on the job as they took care of Kathleen and other students with disabilities. 

Kathleen Downes:  At one point when I was in college, I literally had to make a sign which I printed from my computer, Please wipe from front to back. Because a lot of people just did what was convenient for them based on the angle that they were standing at. And I get it, it's like, it's tough to hold a person up and use your other hand to, you know, really get in there. But, it's like, how many UTIs can I get, man? And they, especially the guys, they would be like, oh, it's front to back, I never thought about it before. 

And I think another skill of being a caregiver, you just, the best ones just melt into the background and only intervene when you ask them to. 

But some people Don't know how to do that at first, so I've had to work really hard to be up front about my expectations and be like, look if I come home and I am You know crying on the phone or something or Gossiping with one of my friends. If I want you to be part of it. I'll let you know

I was like I was at school with One of my student caregivers, the morning that my grandmother died, and it was just like, you, you, obviously you grieve like everybody else does, but I didn't get to do it with any degree of privacy, and I still had to move forward and take a shower. And normally in a situation like that, you would cry in the shower by yourself. But this person has to be with you and they're forced to be a witness sometimes to the worst moments of your life. And paid caregivers come in and out of your life, but they get weirdly, you know burned into certain memories.

Julia Winston: Kathleen studied social work in school, but never got a job that utilizes this degree. Because here’s the crazy thing… If Kathleen wanted to go get a job as a social worker, she would make too much money to qualify for Medicaid, which is how she currently pays for all her medical needs. And she also needs constant care, which is expensive if you’re hiring outside caregivers - too expensive for a social worker’s salary, and too expensive to be covered by Medicaid. It’s a catch 22. So the most optimal situation for Kathleen at this point is to not work, and to receive care from her parents.

In fact, right now Medicaid pays for a caregiver to come help Kathleen 35 hours a week. The rest of the time her parents, who are in their 60, do the caregiving.

Kathleen Downes: I feel that I will always be much more connected to my parents than I would have been otherwise because, I mean, I think needing help from them all the time has brought us closer and forced us to spend a lot more time together than we would have. 

My mom and I joke around, but we're not really kidding, that sometimes it's hard to know where I start and she ends and vice versa. And we're in such a routine that like, it's, it's almost robotic, like the way that she puts my shoes on. Nobody is ever going to do it as automatically or with as much attention to detail as she does. 

So I feel that, you know, my parents and I are very intertwined. And sometimes that's a scary thing because, you have an outsized level of terror about what will happen when they die. but at the same time, I feel grateful that we've gotten to be with each other in this way, and that I have a natural understanding that bodies are not infallible, and that we all need each other in some way. 

Julia Winston: Just like her relationship with her twin sister, Kathleen has complicated feelings about how much love and care her parents have given her throughout her life. 

Kathleen Downes: I feel tremendously guilty sometimes that they can't just go do the things that other people in their golden years are doing. And they've, they've never made me feel bad about that. But still, because of the culture that we live in everywhere around there's messaging that disabled people are burdens and it's hard not to internalize that and feel guilty sometimes.

But I certainly wish sometimes that it was easier for me to do things on my own and that my parents could do what they wanted and they could just be my parents without having to worry about who's doing what. my next shower, and they're getting older too, and there's going to come a point where they may need care of themselves.

And I struggle with knowing that I can't give that to them. So I always tell them I'll do their paperwork. I'll make their calls for them.

Julia Winston: Through her own experience and through connecting with other people with disabilities, Kathleen has learned a lot about the systems that support, or, frankly, don't support, people with disabilities.

Kathleen Downes: In this country, we don't treat these things as policy failures. We treat disability as like, oh, that's a you problem, and your mother will just continue to take care of you even if she's 95 until her heart stops beating. And it causes parents of kids with disabilities to feel like they can never die because the system has a lot of cracks in it. 

I wish the system would update itself to reflect that we are still here. I think it's very much formatted on old fashioned ideas that nobody with a disability was going to live for very long, or that, you know, that they would have no pursuits beyond sitting in their house with their parents and There's so many more opportunities for people with disabilities now, and we are living to the old, so the system needs to catch us. 

Julia Winston: In addition to being a licensed clinical social worker, Kathleen also has a certificate in patient advocacy. She spends a lot of time advocating for better policies and helping other people with disabilities navigate the complicated systems they rely on to get care.

Julia: What are some policy changes that would change your day to day life of past?

Kathleen Downes: So, right now, the only, like, ongoing funder of custodial care, so, Showering, bathing, hair brushing, going to the bathroom. All the things that you need to do to maintain a body. The only major funder for that is Medicaid. Private insurance does not cover that. Medicare does not cover that. So, it's Medicaid or it's out of pocket. And Medicaid requires you to be very poor. Like, not poverty line below it. and As a result, it affects your access to careers and to being able to, to have money for other things. And it, it sort of relies on the idea that your family will just provide for you financially forever. And I'm very fortunate that my parents are able to provide for me financially.But it doesn't feel good to have to be financially dependent on them because I'm in the care system.

The people who write these policies, they don't think it matters for us to have any pursuits besides just existing. So, I wish that Care services didn't have to be tied to Poverty. It's a strange thing to me To put an income cap on a disabled person and essentially punish them for the type of help that they need. If I chose to just say, fuck it, I'm going off Medicaid, I don't want to deal with this anymore, I would literally spend every cent I made on medical stuff, so it's like there's no point.

We've got no problem funding a A bunch of other things, even in the healthcare sphere, like if I tomorrow needed a surgery that cost 100, 000, they would likely pay for it, but if I approached them and said I need 100, 000 worth of 24 hour care, they would be like, LOL no, here's five hours and your aging mother can do the rest.

Julia Winston: Ok… this is just absolutely insane. Are we serious?? How can we allow our system to be so unreasonable and uncaring? We spend so much energy avoiding unpleasant topics like illness, injury and caregiving that we miss the chance to CARE about each other.  To create real change. To contemplate how we might build the kind of support networks and policies that could help people who need help simply live their everyday lives.

It goes without saying that Kathleen is extremely passionate about advocating for change, especially because the way it works now puts a ton of pressure on families. Kathleen’s parents have been physically and emotionally supporting her for most of her life. That takes a toll on them, but it also takes a toll on Kathleen. 

Kathleen Downes: We talk a lot about caregiver burnout. We do not talk about care recipient burnout. It is so stressful to need help with everything because you're constantly thinking about someone else besides yourself and am I hurting their back? Is it an inconvenience for them to drive me here? And then with the paid people, it's like you're always waiting for the other shoe to drop because these jobs unfortunately don't pay well, because again, not valued culturally. So you're just like, Oh God, please don't quit. Please don't quit. If I have to search for another person in six months, I'm going to scoop my eyeballs out because it is so much work to hire and train someone new.

And we talk a lot about the sandwich generation of caring for an elderly person and children and the, and you know, the woman caught in the middle of the sandwich, which is you know, I have an elderly grandmother and then my mom has me and she's in the sandwich. But what if you are one of the slices of bread? I don't think that people think about that it's hard for us too. And I think sometimes we  position the care recipient as burden to the caregiver, and we position the care recipient as feeling bad about needing all the help.

But what if we reframed as a, we're, we're all in the same struggle here. We've all been collectively failed by bad. policy. and at the root of all of it is ableism because when we don't value people with disabilities, we don't value the people who take care of them either. Because I think there's this resounding idea that our lives just have no value. Nor do the people who do the work of keeping us alive. 

Julia Winston: When you think about creating your own family and your future, what is possible and what isn't?

Kathleen Downes: Oh, see, that's a tough one. if I got married, I would lose Medicaid. because they count your assets together with whoever you marry. And I would also lose my cash benefit. So I know I can never get legally married. Which is, I know marriage isn't everything and you can still love someone without ever marrying them, but not having the choice is a sad thing. I have struggled with a hesitation around romantic relationships in general because there's always that question in your head, like, how does the care play into this? Like, if they're able bodied, they're going to have to adjust to these extra people, these caregivers being a big part of your life, and more than likely they're going to have to be comfortable giving physical care to you.

And then if you're with somebody who's disabled, it's like you can't provide care to each other, so you have to think about how to coordinate care for both of you, and there's, at least for me, there's, I've just always had this sense of, let me just isolate myself from this to protect myself, um, because just even, even diving into The dating world is incredibly complex when you need as much help as I do.

Julia Winston: I want to pause for a second and just name what’s happening here. Kathleen is  literally being forced to choose between having healthcare and having love in her life. And that's not a personal failing - that's our system actively pushing people into isolation, it’s a symptom of our epidemic of loneliness. We know that human connection is essential to human life and we live in a society that glorifies romantic love, yet we've built systems that actually punish people for seeking it out. That's not right, and it's not Kathleen who needs to change - it's these broken systems that need to change.  

And I would love to have my own children, but medically, I just don't think that it would be a safe thing for me. And I'm speaking for myself. I'm not at all speaking for all people with disabilities. Um, and also I'm so restricted financially that having my own kids just doesn't feel possible. So I've had to work really hard to nurture people in other ways, and I, I think you can totally have a fulfilled life without having your own kids, but again, policy has kind of made the choice for me. And I do grieve sometimes when I see other people my age that have their own house and three kids and all that. 

Julia Winston: The biggest question Kathleen has about her future is what will happen when her parents can't be her main caregivers anymore.

Kathleen Downes: I very much fear the day that my parents die. It's my biggest fear. And it's a hard thing knowing that your biggest fear is a certainty. But my mom always says that you will be okay because You're the best at all your administrative stuff, and you're a strong person, and people will help you. But it's scary because the systems that are supposed to help us, they don't always. And my older sister is chronically ill and not able to care for me physically.

And a lot of my friends are also disabled, and we're living with the same fears. We talk a lot about, okay, are we going to help each other? I'm so scared about all of It's scary winding up in a nursing home, but at least we'll be together. 

Julia Winston: These policies prevented her from accomplishing certain things an able bodied person could. But her life experiences have given her insights that most of us don't have because the world is designed for us and our bodies. 

Kathleen Downes: Culturally we're supposed to feel ashamed when a body can't do everything on its own, but That, that's the nature of a human body, especially over time. And again, this is very woo woo, but I sort of feel like I've already seen the truth. Nobody is really independent, and nobody's body works perfectly forever.

And it's really hard to develop like a positive sense of self when that's all around you, even if nobody says it to you directly. I resent when people say things like, Oh, if I wind up needing care that will be the loss of my dignity. Because they are implying that I don't have any dignity. It's true that if you have, you know, bad luck finding a good caregiver, they can put you in some undignified situations, but I don't think needing care itself is undignified.

I think the lack of support that Our government gives towards people who need care it certainly reinforces the idea that you don't matter very much and that the people who care for you don't matter very much either. So it's always felt like a mission of mine to be happy anyway. Uh, even when it's challenging.I think that's been the battle of my adult life, is trying to make peace with who I am. 

Julia Winston: It almost seems like an, an act of, uh, like a radical act to be joyful.

Kathleen Downes: Yeah, it's like, of course I have my moments where I wish I could do more on my own. But the truth is that most of the time I'm a generally happy person. I think that this is probably part of my purpose.

A lot of people are, oh you'd still be the same person if you weren't disabled. Really? Uh, I don't, I don't think so. It changed the kind of life I could have. It changed the kind of life that my parents and my family could have. It, it changed, it shaped everything that I am and that I'm going to be.

It's very much a mixed blessing. For all of the things that it's made hard and challenging for me, I think there's also been a million good things. I think I'm probably a way more empathetic person than I would have been. I certainly wouldn't have all this nerdy interest in policy if I wasn't disabled. For all I know, if I wasn't disabled, I could be in, into something that would horrify me in my present life, like football.

Julia: laughing, 

Kathleen Downes: And I've always felt that disability brings me much closer to the truth of life, that Everybody needs each other in some way. The whole idea of independence as a concept, it's false. It's a myth. Um, we, we sell it to people, especially in America as like, you are the pinnacle of success if you're independent, but everybody is interdependent.

Also being in disability world, you see how fragile life is. I have a lot of friends that, because of circumstances around their disability, have not gotten to live for a very long time. I have to be accepting of that and be joyful anyway, which I feel like is a nice hearty fuck you to the long term care system because they don't want you to be happy. and they don't think you can be.   I think it is my mission to be joyful anyway, and that doesn't mean you're happy all the time, but it is You still have a worthy life.

Julia Winston: Kathleen's story challenges us to face a truth we often avoid: care connects us all. What if we saw care not as a burden, but as a bridge between us? What becomes possible when we stop fearing dependence and start embracing our interconnectedness?

As millions of baby boomers age into needing care, these questions will become more urgent for all of us. But perhaps instead of seeing this as a crisis, we can view it as an invitation - to reimagine how we support each other and to reshape how we think about care. Not as a loss of dignity, but as one of the deepest expressions of our shared humanity. Or you could be like Kathleen and treat it like a big FUCK YOU to the system! at the very least – a fuck you to the long term care system. 

By having these conversations now, by hearing stories like Kathleen's, we can begin building the kind of society that honors both caregivers and care recipients. Because, let’s get real - ultimately, most of us will be both.