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.