Sometimes life throws a curveball and children end up being the ones looking after their parents. In this week’s episode, both of our storytellers share stories about times they needed to adult-up and take care of their parents.

Part 1: When Saloni Singh’s mother is diagnosed with terminal cancer, Saloni is unexpectedly shoved into the role of caregiver and matriarch.

Saloni is known as the ‘girl in the white headphones’ because she is happiest when she is sitting in a corner, her noise cancelling headphones playing classical music, her Mac open and words pouring out of her. Those close to her will tell you that she lives life in techni-color and feels everything deeply so it’s hard not to listen when she begins to tell you about it. Saloni’s storytelling skills were first noticed when she distracted an entire wedding party with a story she was making up on the spot that combined Snow white, Cinderella and Thumbelina as one character – she was 2. She hasn’t stopped since. In her words - “I’m a corporate rat by day, introverted writer by night. Stories find me and then I try to find the courage to tell them.” She has been writing for years but has begun sharing her stories only recently at various platforms like The Moth, Fresh Ground Stories, 7 Stories and Story Sphere. This was her first story at Story Collider.

Part 2: After her deaf mother has several strokes and begins experiencing hallucinations, Michelle Antonucci struggles to get her mom the care she needs.

Michelle Antonucci was born and raised in Greenwich Village, later moving to Queens and now Long Island with her wife Patty and dog/child Charlie. She says she is a true New Yorker, as she does not have a Driver's License! Michelle is proud to be a CODA and has spent her life assisting and advocating for her parents. She is very grateful for her wife who has been her rock throughout her mother, Karen's, health crisis. "I truly don't know how we made it through, my wife is amazing". Michelle's story of life as a CODA and the issues the Deaf experience in health care is not unique, and needs to be told again and again to elicit change. "I need to make all the tears mean something".

Episode Transcript

Part 1

There are two people on the stage right now in front of you, a 16 year old woman and a 35 year old kid. Confused? Tell me about it. Let's go back a little bit.

My father was number three of four siblings. I followed five kids, all roughly a year apart. Clearly, the adults in this family were having a great time. But I was everyone's baby. I mean, if I got caught in a game of hide and seek, the game had to stop, and we had to play something else.

All my brothers grew up wearing each other's hand me downs, but this little princess got the pretty new dresses. Every chance they got, my aunts would dress me up like a doll, and the whole family would line up in the living room, watching me sing and dance. Every word that came out of my mouth went with wonder and applause.

Eventually, my dad moved away and the family shrunk to mom, dad, my elder brother, and I. But the dynamic didn't change. Let me paint you a picture.

I was five years old when I was given my own bedroom with an attached bath and a dressing area.

Every morning, my elder brother would be sitting downstairs, fully dressed, obediently eating breakfast, and I'd be on the top floor running around saying, "Where's my books? Where are my shoes?” My hair wild, my tie crooked. And my mother would be chasing me around with a breakfast sandwich to get a few bites in before the damn school bus arrived.

I would turn up late for dinner every night, and then most nights I would simply refuse to eat whatever my mother had made. So it had to be packed away, and the family would drive to my favorite pizza place.

A little spoiled brat. That's who I was.

Now, from these stories, of course, it seems that I was the bane of my mother's existence, which was probably true. But we were very close. I mean, we were very different people even back then. She had been raised to be really loyal and subservient and I was loud and opinionated. She liked to eat salads and fruits and I was practically made out of junk food and ice cream. She was neat and organized and, well, if you could find my bed under my blankets and books, good for you.

But in this large patriarchal family way back in India that we were both living in, she was always under pressure to be the perfect daughter in law, the perfect mother, the perfect wife. I was her only friend. She could confide in me, tell me things that she couldn't say to other people, and I would listen and hug her and make her laugh. It's like we had our little sweet secret world. We were so happy to have each other. Thick as thieves.

So, of course, it was me that she decided to tell when she felt a bump under her arm. She showed it to me, we looked at it, figured it was a pimple. Put a band -aid on it, forgot all about it.

But then the bump got bigger, so she showed it to me again. And I said, “Why are you showing it to me for? Go see a doctor, man.” So she did.

Further inspection showed that she had a cut on her left breast, which was bleeding. “Ah, it's a skin allergy,” the doctor said, and gave her a lotion.

My mother obediently applied the lotion for several weeks, but the cut continued to bleed. So we went back to the doctor who took another quick look and simply changed the lotion.

A few more weeks went by, but now the lump was becoming bigger and the doctor was completely lost. So a flurry of random tests started, but none of the tests would tell us anything.

Oddly, it was me who first uttered the horrifying words in a very quiet car ride from yet another appointment.

“What if it's cancer?”

“Don't be silly. You watch too many movies. What do you know? The doctor knows best.”

But I repeated that a few weeks later at breakfast.

“What if it is cancer? Shouldn't we at least find out?”

By that time, the lump was big enough that my parents agreed. It took all of five minutes for the oncologist to confirm our worst fears. A biopsy was sent off for a sample and this time the test came back quick. Stage four, breast cancer.

The lump in my mother's breast had tentacles growing up her nose, reaching for her brain, and further expanding across her chest, reaching for her heart. The doctor gave her six months to live.

Ever been on a roller coaster? When it's going up and down and you're laughing and cheering, and suddenly the roller coaster turns upside down, you feel bile rise up in your throat and you think you're going to throw up. That's how that moment felt.

The best oncology specialist was in a whole other city so dad called him and took him through all mom's reports. And he said, “Well, the only thing you can do is chemotherapy and radiation to at least try and slow it down.”

I remember that evening like it was yesterday. My dad and my grandpa walked away discussing finances and logistics. My brother went to his room, leaving me and mom on her bed.

She slowly reached over and grabbed my hand and said, “I have very little time left. And you know these men, they can't even boil water. You have to take over for me.”

I remember snatching my hand back saying, “Are you crazy? You can't be serious.” I mean, come on. My mother ran that house with the expertise of a CEO running a company. And I was like the unpaid intern who shouldn’t have been hired in the first place. I couldn't take over.

But funnily enough, it was my gender that was getting me the job this time. As the only other woman, it had to be me.

So my on the job training started. Mom's treatment was in a different city, so her and dad were away a lot, leaving me in charge of the house, my grandpa and my brother. I was in high school. A kid who had never entered the kitchen. Didn't know how to switch on the stove. Hell, I didn't know the difference between dishwashing liquid and cooking oil.

So I fumbled. Dishes would constantly fall from my hands and crash to the floor. The blender would explode because I forgot to put the lid on. The house would constantly smell of burnt food and the laundry would be piling up in one corner completely forgotten.

On the rare days, mom was home. I was her nurse. I had to remember to give her the meds on time, to apply the ointment properly, to make the high protein meals she needed to keep her immunity up to continue the chemotherapy that was keeping her alive. Some days I got it right. Most days I didn't.

Then the news of my mother's illness traveled and my mom has a lot of fans, so there was a line of people waiting outside the door to see her. The doorbell rang every five minutes. Now, these would have been quick visits that all of us would not have noticed, but my mom was the perfect hostess. And now she wanted me to play that role.

Hot tea and snacks had to be served to every single guest. I don't know how to make tea, so I screwed it up. The tea would be cold, I would break a cup so the pair wouldn't match, the snacks would be undercooked.

That's when the shaming began. “Oh, clearly this apple fell very far from the tree. Hahaha.” “Oh, I taught my daughter how to cook at a very young age. I mean, you really must teach them young. You know, it's always the young ones who are really spoiled. I mean, look at her. She can't even hold a tray.”

As the chemotherapy weakened my mother, the words began to come from her. Frustrated that she couldn't help, she would criticize every single thing I did. And I would scream, saying, “I'm doing my best.” Then I would go and hide in the bathroom crying, holding on to that sink going, “Why is this happening? Is this my life? Is this my life? This can't be happening.”

At this point, it felt like the patient and the nurse both were not going to make it. And then summer vacations rolled by so my dad flew me out to the city where my mother was getting treated. I walked into the room where she was getting chemotherapy and she was sitting in this chair, really small and frail. She smiled at me weakly and waved, and I waved back. The nurse sent me outside.

I hope none of you have experienced this, but the oncology wing of most hospitals is very quiet. I was sitting in the hallway with my head in my hands and all I could hear was the pitter patter of tiny feet, so I looked up. And through this dark hallway with just a little bit of light coming from the window at the end, I could see the silhouette of this little boy and his father who were walking up and down.

At first, I thought nothing of it. I figured it was another kid who had to be distracted so that they didn't make a scene. But then they turned around and started walking towards me, and that's when I saw it. The needle that was going into the little boy's arm, attached to a tube going into a bag of chemotherapy the father was holding up.

The kid was too young to know any better, but the tears trickling down the father's face told me it wasn't looking good.

That was the moment I grew up. This wasn't about me. This was about my mother. My life was only changing. Her life was ending. And from that day, everything changed. I began to Google recipes. I learned how to make grandpa's meals the way he liked. I woke up early to get breakfast ready for my brother and I before school. The house became neat and organized. The laundry got done on time.

One day, my mother called me, saying the really grumpy aunt who had visited us the day before had called her praising my maturity and hospitality. My mom was crying. “My little baba's all grown up. I can leave this world peacefully now. We're both ready.” And it really felt like we were. Like we were both coming to the end of this long road and now we just wanted the car to stop.

But that car took a sharp turn left. A young doctor came to my mother's hospital and brought with him an experimental drug. It had never been tried before, so we didn't know the risks, but we had a few months left on the clock. We didn't care. We signed up immediately.

My mother was moved from the general ward to a VIP suite where a bunch of doctors started giving her attention. For legal reasons, they couldn't even tell us what the drug did, except for the fact that it was non invasive. They would just put three drops in my mother's nose while she got her regular chemotherapy. Three little drops that proved to be magic. The tentacles died and stopped growing, and the tumor shrunk.

Eventually, they felt confident enough to make a small cut on the side of her breast and simply pluck out the tumor that was dead.

Eventually, they did a little bit of radiation to make sure nothing came back, but then she was in remission. It was over. I was still in high school.

But while the cancer had changed my mother's body, somehow it had done the same thing to my mind. Because while now, technically, I could go back to being the kid I was, I'd forgotten how. It was like in that movie, The Matrix. I had been brutally unplugged and I couldn't go back. I'd forgotten how to laugh and be naughty and gossip about boyfriends. I was a 16 year old woman. Too mature, too serious, too heavy on the head.

“Why are you such a granny? Lighten up!” “Oh, please can someone give her a cane to walk with. She's so old.”

Eventually, that stopped. Everybody stopped inviting me to birthday parties, labeled a weirdo, a misfit, excluded from everything.

This feeling of not being good enough for anybody began to set deep into my bones, so I poured myself into work and academics, three postgraduate degrees, multiple promotions. Eventually, I left the country, bought a large house, hired full time help, living a life of luxury, creating a new identity of someone who could do anything, someone who is admired, and someone who is now welcome everywhere.

More than a decade passed, and a few years ago, work brought me to the US. In this strange new do it yourself world, something really strange became painfully apparent. That I couldn't bring myself to do basic things, like load the dishwasher or make toast. I mean, I tried. I just couldn't do it.

As it turns out, the trauma of being forced to run a household at such a young age had created a mental block in my head that I just couldn't get past. I would enter the kitchen and I would get paralyzed. And now there was no help to hide behind, so my new boyfriend and friends began to notice. The shaming began again.

“Oh, look at her, our little Indian princess. Is this beneath you? Do you need us to help you, my lady?”

Or sometimes, "Why are you a 35 year old kid, dude? Like, grow up. Everybody knows how to do this.”

A misfit, yet again. Failing at life, yet again. And this time, I began to sink.

Luckily, life is not without its little mercies. Medicine in the form of psychotherapy found me and over four long years, the 16 year old woman and the 35 year old kid met.

The 16 year old was pissed off. “Why do I have to take care of everyone? Why doesn't someone take care of me for a change?”

The 35 year old kid was stomping her foot going, "Why was my childhood taken away? You know what it was? I was so free and cool that I was punished. That's what it was. I was punished.”

They talked for a while. Over time, we understood what happened and the shame and loss and humiliation just fell away. And together we learned to forgive. Forgive the mother who had asked way too much of me, because who else would she have turned to? Forgive my boyfriend and my friends and people in my life who will probably mock me forever because they don't know what happened. They weren't there. But most importantly, to forgive myself for having been lost and scared for so long. That gave me the strength to pick up the leftover pieces of my personality and start over, to pick up a pen and start writing my story.

It's taken me 26 years to say this, but I really don't care what anybody thinks, because you know what? I tried my best, and my mother's alive because of it. She's still with us today. All those years ago, I helped save her. Now, I'm going to save myself. Thank you for listening.

Part 2

I'm standing in my basement talking to my mother who's sitting right across from me on the couch. She suddenly jerks back, wide eyed, trying to get away from something. She puts her hand on her head and she says, "Joyce, needle."

Joyce is one of the many fictional delusions my mother was having that was harming her, but this was the first time I was seeing it in action rather than just hearing a story about it.

My mother had been living with my wife and I on and off for about four years. She needed someone to cook, clean, and make sure she took her medications. I was and am the only person that could take on that job.

My brother and I were born to two deaf parents. My father died over 20 years ago. I'm what's known as a CODA, a child of deaf adults. When my mother was a baby, her parents took her from doctor to doctor to figure out what was wrong. Many wanted to institutionalize her, until one finally said, "She's just deaf."

Many deaf in my parents' generation grew up in homes where no one spoke ASL and, therefore, they didn't communicate with their own families. My parents' schooling was focused on adapting to the hearing world instead of actual learning. They were punished for speaking ASL in school and they had to wear hearing aids that back then were huge contraptions, even though they were 100% deaf. And they were forced to do things like sit in front of a lit candle and say the letter P over and over until it blew out.

Like most CODAs, I was the bridge between the deaf world and the hearing world from the moment I could speak. I was their ears, their voice and, most importantly, their advocate. I had to grow up fast translating about things I didn't understand like IRAs and leaky sinks. We were stared at all the time.

At restaurants, my parents chose to sit in the back facing the wall. I had to hear cruel and ignorant statements that would repeat over and over in my head. “Deaf and dumb”, “deaf mute”.

My parents would ask, "What'd they say?"

“Nothing.” I didn't want to hurt their feelings. Instead, I grew a thick skin and I protected them. I was their parent just as much as they were my own.

My favorite was when people would speak louder when they found out my parents were deaf. Even doctors. Or when they would ask, "Can they sign their name?”

I wanted to scream, “It's their ears that are broken, not their brain.” But I'm a polite CODA.

I have wonderful, beautiful memories, too. Deaf people are very strong and very brave and very proud. They have their own culture, humor and mannerisms. I can remember going to the deaf clubs, all of us CODAs sitting in the back of the room, falling asleep while our parents talked the night away. You would think it was a quiet room, but it was loud. Hands flaring, voices humming, and laughter.

And before there was caption, CODAs were caption. I remember sitting in front of the TV telling mom what Bobby Ewing was saying on the show Dallas.

When I was about seven or eight, I was in my grandparents' kitchen. My mom was in the living room within eye shot. My grandma got up and dropped pots and pans onto the floor. She said, "See, your mother's deaf."

I had just been telling her that my parents weren't deaf at all, that they were spies. And that I would try to trick them by covering my mouth and not yelling mom and dad, but yelling their real names, “Karen, Vinnie.” But they never turned around because they were good at their job.

My mom never slept at night because she was worried that we would need her, even though we had a light that flickered when we cried.

One night, on her rounds, I reached out my hand in the dark and I touched her. She put her hand on mine and her hand said, “I love you,” an emotion more meaningful than any word said aloud.

In June 2021, I went down to make sure that my mom had gotten up for the day. She was lying in bed staring at the ceiling and wasn't moving. I tried to rouse her, but she wouldn't move. I immediately thought she went blind. My worst nightmare.

I signed into her hand, “Hello. Hi, Mom.” Nothing. Turned out, she had multiple strokes due to a blocked artery in her heart. Mom came home to recover before having bypass surgery.

All CODAs know and experience that hospital rules do not apply to us. We can come and go 24/7. We can walk into ICU's, pre op rooms, recovery rooms. I probably could have stood next to the surgeon had I asked. Why? Because not even the medical field knows how to effectively communicate with the deaf.

They forget that the deaf have feelings and thoughts and opinions of their own. They forget to be nice and reassuring. Instead of explaining what they're about to do, they just do it, and my mom negatively reacts and she's labeled as difficult.

My mom came home to recover from bypass surgery, but I knew that this living arrangement was no longer temporary.

I don't remember when my mom started hallucinating, but I do recall all the screaming and crying about all the people trying to harm her, about the clown climbing into the window, the dragon on the ceiling, the war in my backyard, the hole and the coffin under her bed, and all the cameras watching her. She couldn't understand why I was allowing people to harm her. She would scream and cry all day long, but especially in the early morning hours when the rest of the neighborhood was sleeping.

And while she's screaming and crying, I'm kneeling in front of her, crying, “Please stop.”

Neurological scans showed that the strokes had caused significant brain damage. Medications helped her to sleep, which meant my wife and I could sleep as well.

Things were good for a short while, but then the hallucinations started and Joyce was back. I really hate Joyce. I called, I emailed, I Googled so many places trying to find help. They said that she needed a psychiatrist, but all the waiting lists were six months long. I apologized to all the receptionists who cried along with me as I pleaded, "I just need help."

Out of desperation, we took mom to a walk in clinic where a psychiatrist prescribed new medications. He also put her on a wait list for a psychiatric facility. Again, a doctor trying to institutionalize her.

The medications worked until, one day, my mom tried desperately to get out of the house because “they” were trying to get her.

I broke down, probably for the millionth time, but I knew it had to be the last. On November 1st, 2022, we took mom to the ER and sat for hours and hours. I sat in that chair and cried as my mom rubbed my back comforting me.

I pleaded to the staff, "Please help us." Finally, a nurse heard.

Mom was unofficially diagnosed with dementia. I learned that hallucinations can sometimes occur with dementia, but that because of their sensory loss, deaf people can suffer more severe hallucinations than hearing people.

Social workers began submitting applications to nursing homes that kept getting denied. The staff would whisper to me, "They won't admit it, but it's because she's deaf."

Like a good CODA, I stayed with mom day in and day out. On Day 20, I lost all hope and I envisioned mom coming home with us and I melted, probably the biggest breakdown I've ever had. I cried and I cried and the psychiatrist came in and I pleaded and repeated over and over, “We can't go home.”

On December 1st, 2022, mom was finally accepted to a nursing home after being denied 46 times. She was in the hospital for a month not because she was sick but because she had nowhere to go, because the system failed her.

Sending a parent to a nursing home is the most difficult decision that any child has to make. Sending a deaf parent to a home where no one knows ASL or understands the deaf culture and history is agonizing.

Now, I was the one putting her in a home where she would not be understood, where it is her versus the hearing people, but she needed more one on one attention than I could safely provide.

A few weeks into being in the nursing home, a nurse practitioner called with lots of questions. She finally asked, "Is your mom schizophrenic?"

"What?"

She said, "I'm so sorry and ashamed that someone wrote 'schizophrenic' in her file." Not that she was deaf with dementia, but schizophrenic. Once again, misunderstood simply because she cannot hear.

My wife and I visit my mom at least twice a week and I video chat with her very often, but she's still lonely. Why didn't I put her in a deaf nursing home? Because despite the number of deaf seniors in New York, there aren't any. In fact, there's only two in the United States, one in Ohio and one in Massachusetts.

It's now almost a year later and Joyce has found her way into the nursing home, wreaking havoc. I sometimes still have to remind people to pull their mask down or to face her when speaking to her, to be patient and to watch their body language.

Around month eight, I was on a video chat with mom and a staff member walked in. She said, "You want to join us? We're listening to music."

I'm a polite CODA and I've learned to choose my battles, so I kept quiet.

Thank you.