I Don’t Know How He Works in Theatre While Fighting for His Mom’s Right to Healthcare

About the Artist Caregiver

I’m a thirty-two-year-old cis white gay man in New York. I work at two prominent Broadway/Off-Broadway nonprofits and as a freelance audition coach and reiki practitioner. I am an auditioning and represented actor. I live with my husband (who is a server and performer) and our dog, cat, and (his) snake. I care for my mother and grandmother who reside in a nursing home ninety minutes from my home.

Village: My mom lives with traumatic brain injury and immobilizing arthritis, and my grandma (who used to be her caretaker) has dementia. My husband supports me. I support my mother and grandmother. No other family is able to “help” with the caretaking except three family members who live in different states. While supportive and communicative, they’re not on-site. The staff at the nursing home are part of our village. There is one certified nursing assistant CNA I consider family. Executive staff act as a barrier to care. Insurance is the Village demon.

Financial Impact: In 2021 at age twenty-eight, I was forced into putting both my grandmother and mother into care facilities. I was working full-time making a six-figure salary and was denied a leave of absence to help my mom and grandma in their transition, which forced me to have to leave that job. I bartended part-time while my mom was evicted and moved between four different nursing homes and my grandmother suffered a stroke and needed to apply for Medicaid. I took a chunk of her money to cover my own bills and health insurance during that time but had to do a GoFundMe to raise it back, or else my grandmother would have been denied Medicaid. I came out of it all with $30,000 of debt. Though happier working in theatre, I cobble together multiple jobs at a time to equal full-time hours (often more), but not a living wage.

Diary

Friday

9:30 a.m., Kelly Clarkson’s Underneath the Tree blares on the speakers. Last night, I went to a fantastic event that awards grants to indie theatre artists. The event happens annually, but it was my first time attending. I was representing my solo show that I’m currently producing. My husband and I were both busy yesterday, which was the anniversary of our engagement, so we planned to wake up early today and decorate the apartment for Christmas. We light the tree, hang the garlands, position the icicles.

We finish just in time for my 3:00 meeting with the director of my solo show, a producing consultant, and a dramaturg. My solo show details my struggles getting my mom the care she needs while she was bound to government healthcare in a Medicaid nursing home—a prison. I have to create this show as an act of activism. The system that puts profit over patients is criminal, though not yet by law. I vow to work tirelessly until these criminals are finally recognized as just that. My director and the consultants agree that there’s not enough of me in the show. Not enough of what I’ve sacrificed to try and care for my mom and grandma.

I hop off the call and send one last email to the social worker at the nursing home. Every couple of days, I follow up on the care I’ve been requesting for two years now. They won’t do anything for us, but it doesn’t stop me asking. I just want them to explore a different treatment option, but they’ve delayed and denied the care without a clear or official reason.

Now, I’m off to house manage Off-Broadway.

It makes it feel like it’s my fault. I know it’s not, but I’m the only one around, so who else is there to blame?

Saturday

I’m house managing again today. It’s the show’s closing day (and a two-show day). I enjoy making sure people are taken care of and things are running smoothly, and think I do it well!

I call Mom on my quick break as I walk to get a bite. She wants to leave the nursing home; she tells me she’s ready to go. She tells me she wants to get a small apartment for her mother and herself. I tell her, “You gotta lose weight and get your surgery first, and then we can talk about it.” I wish every conversation didn’t default to this, but every conversation with her starts or ends with this. It makes it feel like it’s my fault. I know it’s not, but I’m the only one around, so who else is there to blame? I try to remember to have compassion for myself, for her, for the whole situation. I tell her I’ll see her Thursday. She asks, “How many days is that?”

Sunday

I work a double at my other job managing a rehearsal space. Eight hours just sitting at a front desk gets monotonous.

Free time is something I struggle with—I always have. As a child, I didn’t realize all the responsibility that was thrust onto me as an emotional caretaker for my mom. When her physical health began declining, I was launched from emotional caretaker to a literal one. I think that’s why it feels like I need to be needed to activate. I don’t know if I’ll ever have a healthy relationship with free time.

The phone rings. Hi, Mom. What’s up? Mhmm. I’m at work right now. No, it’s okay, I can’t talk long but I wanted to say hello too. I know you want to get out of there, Mom, but you can’t yet. You need to lose weight so you can get the surgery on your knees, remember? I know, Mom. Listen, let me go, I’ll call you later. Love you. 

I miss her. “Would anyone like my shift tomorrow?” I type into my coworker group chat. But before I hit send, I need to think it through. What’s tomorrow’s train schedule? Will I arrive during recreation time or after? Will she be dressed and ready? Will her diaper be clean? What time would I need to wake up? With the anxiety of someone fighting off a lion, I hit send. Instantly, someone picks the shift up. Looks like I’m going to Mom’s tomorrow.

I hope the call lasts an hour, because then I can get the full $26 of my hourly pay.

Monday

It’s 3:47 a.m. I’m having trouble falling asleep. I hope I can get to sleep soon. I don’t want to ruin my day.

I wake up around 11:30 a.m, already stressed. If it gets too late, it feels pointless to go to the nursing home. I forgot I have a 2:00 p.m. call with my managers at the theatre. Shit, the dog needs a walk. I’d usually call Mom on my walks, but do I tell her I’m coming? If I tell her and don’t make it, she’ll be upset. If I don’t tell her, I’ll feel guilty. Maybe I just won’t call at all…

Hi, Mom. Yes, it’s good to hear your voice. How are you doing? How long has that hurt you? Did you tell anyone? The nurse? Your aide? Okay, well tell someone, anyone, everyone. I’ll tell them when I talk to them. Me? I’m walking the dog. She’s good. She says hi. (In dog voice) “Hi I miss you!” Yeah, that was her. I wish you could too. You’ll come see my home one day. Yeah, and my job too. Alright, Mom, I have to go. I have a work meeting in a bit. I’ll talk to you later. Love you.

I tell myself I have to do just one thing for them today. A nurse called me three weeks ago to confirm a follow-up appointment for my grandma, and still no appointment is made, I’d do it if I could, but they have to. 

I text about Mom’s pain and Grandma’s appointment, ending with “Please get back to me.” I get a reply pretty quickly: “Let me find out for you and get right back to you, 5 minutes.”

Almost a full ninety minutes go by. I doomscroll. If my mind is off and jumping from one square to the next every four seconds, I’m not thinking about how angry it makes me that it takes three months to get an answer to a simple question. The phone finally rings.

“Hello. I’m not at the nursing home now, and I will have to give you an update tomorrow.

“But that’s what you told me last week.”

“I know, my apologies. Have a fantastic day!”

2:00. I hop on the call with the theatre. I hope the call lasts an hour, because then I can get the full $26 of my hourly pay. The two people on the call have salaries and health insurance. I have $26.

The call does last an hour, and now there’s no more excuses. I need to go. I should go. It’s time to go. But I do not move from the couch. A full day on the couch in paralysis. You could call this a day off, but I’d rather have worked for fourteen hours straight.

My husband returns home. I’m sad, I want to cry. “I didn’t go. All I had to do was go visit her, and I couldn’t even do that. What is wrong with me?” He cues up our favorite movie. Time on the couch doesn’t feel so bad anymore.

Tuesday

It’s 11:00 a.m. I’m awake, dressed, the dog is walked, and I’m going to meet C. I spent eight years starring in and directing shows for her immersive theatre company. My first show with her was in an abandoned theatre on 42nd Street in 2015. It was the last show my mom and grandma were well enough to make it into the city to see.

C is working on an art/activism project to free an elephant who’s being kept in solitary confinement at the zoo. I jumped at the opportunity to spend the day travelling around the city putting up posters with her.

I get a text from the theatre. “They’re cancelling the show tonight, can you call off the staff?” How long will it take me to tell five employees they don’t have to come in for work—five minutes, ten minutes? $4.30 that I can put on my time sheet. Yipee.

We drive all over the city, hanging posters with art that she drew of an elephant behind fences. We talk about life, art, history, memories, artificial intelligence, billionaires, optioning scripts, and, very briefly, of my mom. She wants to free an elephant. I want to free my mom.

We finish at 6:00 p.m. C’s been like a mother figure to me. I have a lot of mother figures in my life. Sorry, Mom. I should call her.

The phone immediately goes to voicemail. This is the fourth cell phone I’ve bought her this year. I’ve asked the nursing home to please install a bedside phone for her many times. “Absolutely,” they always tell me. Still no phone.

Wednesday

I haven’t experienced a show day in a while. The last show I performed in (besides my solo show) was Hair in November 2022. My grandma’s favorite. She had just moved into assisted living. Her dementia was apparent but not debilitating yet. I remember taking a train at 9:00 a.m. to pick her up, got right back on the train with her, took her to lunch, and brought her to my 12:30 call time. If Mom was able to stand, and if Medicaid covered recreational rides for wheelchair users, I would’ve loved for her to be there too. I wonder if either of them will ever get to see me perform again.

But…show day. My friend curates a show that sets circus performance to a live band. I am the emcee. Shots get me through my first time emceeing in years.

I think my performance was shit. It was. But it was fun, and everyone else was great. My husband and I head to the piano bar that we met at. I drunkenly sing a tune with my friend on the keys, and hubby takes me home. Apparently, I spent our walk home and the rest of the evening tormenting him, repeatedly asking if he still loved me. 

Thursday

I wake up surprisingly fine this morning. I was afraid I’d oversleep and miss going to Mom’s again. My husband wakes me up with an “I Love You.” A shower, one too many makeup removal wipes, and shit! I forgot I have a video meeting with the theatre. I hop on four minutes late and blame it on my dog. Thirty minutes. $13. I suit up, walk the dog, have some oatmeal, and head to the train.

I work on an application for a fellowship program while commuting. I’m submitting my solo show to a program that mentors artivists (artist/activist). I’m feeling good so the application responses flow out of me. I’m really proud of it.

The train slows down over the bay, the water rushes beneath the tracks. Should I go to the store for them first? If they need anything, I’ll trek back out. That can be a good excuse if I need a moment to breathe.

There’s a new receptionist, finally. She’s sweet. The last receptionist was a temp security guard. He was nice, but he was security, in uniform. Before him was a girl, younger than me. She would give me solace when I was distressed or crying which… was often. It’s nice when a kind face greets you in a cruel place.

I go to Grandma on the sixth floor. When she had a stroke and needed to move to a nursing home, I worked hard to get her into the same home as Mom. They were in the same room for a while until the social worker decided to move my mom to a locked dementia unit like a prisoner, all because she had a meltdown in the lobby over wanting to get her nails done. Important to note that Mom doesn’t have dementia; she lives with the effects of a very severe traumatic brain injury.

Grandma isn’t in the rec room. She’s not in her bedroom either, but her roommate Margaret is. Sweet lady, but she never stops talking, so I keep it quick.

The system is designed to keep her there so the government can put her money back in their pockets. 

I take the elevator downstairs. Mom’s floor is locked, so you need to punch in a secret code. Mom’s roommate is at the elevator doors trying to get in. Since the floor is locked, the residents stalk the elevator doors to try and sneak out. It’s sad watching residents try to escape.

My mom is almost three hundred pounds, can’t stand or walk, and just pushes herself along slowly in her wheelchair. She knows where she is, when it is, who we are. Because of the brain injury, she has a temper. My whole life she’s had screaming outbursts. I guess it was “too much” for the executive staff (who are paid with every bit of my family’s income). Every aide who does the real work of caring for my mom, and her temper, deeply disagrees with moving her.

Mom and Grandma are hanging out together on the fourth floor. Not much makes me happy about this place, but this does.

I really thought that a nursing home would help. Mom needed assistance losing weight through physical therapy, exercise, and, I thought, the new weight loss medications on the market. If she lost enough weight to get knee surgery, she’d regain the ability to stand and walk, and she could resume the independent life she lost. My god, was I naive.

A few residents are all huddled by the television playing trivia.

Trivia ends, and we say our goodbyes to the others. I take Mom and Gram to hang out in Mom’s room. All the residents are sweet, but when I’m there, I try to make time for us that doesn’t feel like we’re trapped in a hospital.

Mom packs her things up into garbage bags almost every day because she wants to leave. She used to have a bunch of duffle bags and purses, but I took them away so she’d stop packing up. Now, she just uses garbage bags. Every time I go, I unpack them all with her, hang the clothes back up, organize the toiletries and electronics I’ve gotten her, and tell her, “We’re just making it feel comfortable until you lose enough weight for your surgery and can get out of here.” I used to genuinely believe this would happen. Now, I don’t. Not because of Mom’s health, but because of the United States healthcare system and this nursing home that I put her in. The system is designed to keep her there so the government can put her money back in their pockets.

By the time Americans are confronted with the horrors of a nursing home, they’re either all on their own, at death’s door, or have family that can pay to get them private care. I feel like situations like mine are rarer: I can’t afford a house for us. I can’t afford private care. But I can see the negligence that the state hopes will go unnoticed and that no one will do anything about it. But I can tell her story. I can expose this. I can do the work to change this. Well, I hope I can….

Reflections

A note from the cared for: I asked my mom if she’d like to add anything and recorded her response. The recording lasted ten minutes. I plucked this quote for you.

Me: “What does it mean to you to have me help you in this way?”

Mom: [speaking directly into the microphone, to you, the readers] “I’m sorry to say that he is my son, and I’m supposed to be tending to him. But on the other hand, he’s coming and tending to me and my needs. And… I… It’s easy, and it’s not. He makes it easy for me because he’s a pleasurable fella. And he’s more good looking than I could have asked for. But… It is what it is. I know I say that over and over, but I like to take care of my own stuff…”