It’s a Friday night and I’m stuck in a broken elevator in the assisted living wing where my mom now lives in New Jersey. Not exactly the weekend I envisioned at midlife, but here we are. If I were at home in LA, I’d be doing happy hour, then dinner, then soft pants by 10. Instead I’m wondering if anyone actually monitors the emergency call button in this elevator — or if that’s also something I’m supposed to handle. I text a selfie to my Daughters of Decline group chat, knowing they’ll at least make me laugh. And they deliver. “But they’re supposed to assist your living!” “The elevator won’t let you down.” “You’re floored.” They were on fire. Meanwhile I was out of snacks and low on patience.

My mother is 91. She had me, her first child, at 42, then my brother at 46. She has heart failure, COPD, narcolepsy, and a devout faith in pleasing people. After my father died, she moved to the “independent living” wing at a top-rated Continuing Care Retirement Community where she’s been for eight years. CCRCs market themselves as last-stop destinations for aging — promising seamless transitions from independent living to memory care and hospice. When she moved in, we didn’t calculate how long and in what circumstances we could afford for her to live here. Instead, we were just eager to ease the sting she felt in leaving her home, and the vibe here — somewhere between college dorm and cruise ship — did just that. There’s a cafeteria, a dining room, library, gift shop, beauty salon, art studio, theater, gym, and indoor pool with daily water aerobics. The pickleball court and medical spa are part of the recent push to attract younger old people. It’s idyllic, and my father’s Port Authority Pension — an epic windfall that catapulted my mom from a working-class existence to this “luxury” village — has covered it. Until now.

And while the amenities are great, I would vastly prefer being in LA than stuck in this elevator. But I'm here because in March some of my cousins brought my mom to a party. Despite knowing her medical conditions — and that she's a fall risk — they served her shots and then kept her overnight without her medications to keep their party going. She woke up at 1am, disoriented in a strange bedroom with no wall rails, and fell. One cousin called me from the ER, reporting that she had two fractures in her femur and respiratory failure. "It's no biggie," the cousin said. Frantic, I flew across the country and haven’t left. I haven’t seen or heard from the cousins since.

Here's what my days look like now: I dress her. Bathe her. Do her laundry. Calm her when she struggles to use a tool to wipe herself. Push her in her wheelchair to and from physical therapy where she’s learning how to walk again. Drive her to the oral surgeon, since she lost a tooth when she fell. Replace hearing aids. Talk to Medicare about coverage gaps. All in a facility that claims to offer comprehensive care, that has a beauty salon where she could get a blowout — if she pays someone to wheel her there. But when her oxygen line fills with condensation or she's stranded on the toilet buzzing the aide for help, she waits. The facility suggested I hire my mom a personal aide to help with these needs, for an hourly fee. It's the assisted living version of charging for carry-on bags, a clause we discovered by falling into this crisis.

On the nursing end of things, this place couldn't be better. The nurses are outstanding, and Medicare pays for that. But my mom's pension has no room for extras and that’s why I’m still here, essentially her one-woman eldercare coordinator and aide. I'm doing the work this place markets — and I'm not alone. The other daughters here greet me with knowing, empathic looks. Our text thread is a place to both vent and laugh. One of my recent contributions: “OMG today the guy in 324 walked to the dining room naked except for a tee that read With a shirt this amazing, who needs pants?” This was the first penis I’d seen in months — and one I’m still trying to scrub from my memory.

Together we navigate a system propped up by an architecture of guilt — the emotional scaffolding that keeps daughters like us from walking away. Because not being here feels like neglect. And that emotional bind is exactly what the system monetizes. I’m not accompanying her to appointments; I’m proving I’m a good daughter. (Never mind that I have a younger brother, a disabled veteran, who lives 20 minutes away. A topic for another time.)

Like many women — especially self-employed, unmarried, child-free daughters — I’m assumed to be available, graceful, and self-sufficient. When I do the caregiving, it’s called love. When I pay someone else to do it, it’s labor — a framing that hides the real cost: my time, my sanity, my financial future. According to the AARP, unpaid caregivers contribute $600 billion annually to an industry profiting from the illusion of care, and give an average of 18 hours a week while losing income, savings, and Social Security in the process. It’s a quiet catastrophe that guts the future. My financial plans are ruined. A partner I loved couldn’t take the strain. My sunny LA apartment sits empty. My friends, creative work, and life are all there. And I’m here.

I'm scared to choose my own future over my mother’s. I’m scared to be stuck here indefinitely. I also fear that if I go back to my life something terrible will happen to my mom — and I will lose this opportunity to be with her forever. I love her so much it knots my stomach. I love this extra time with her, eating together and listening to her tell the same childhood stories again and again. Loving her also means I can’t stand to watch her suffer, worry, or slip further away, but I know I’m losing her and I can’t handle that either.  

Amidst these immediate tensions, another, more distant one has come into focus: If this is care at its best, who will help me when my independence deteriorates? It’s a bleak future to anticipate, one that has me wondering if I'd prefer to plan my ending — somewhere serene, somewhere with agency. I try not to spiral. But lately I’ve been confronted with two endings at once: hers, which is near, and mine, which I hope is far off. I’d love to get back to wasting time on lighter obsessions — like dating or shoes.

Back in the elevator, I press the help button. Then the emergency button. No response. I slump against the wall and laugh, too exhausted to panic. It’s almost too obvious a metaphor to text the group: stalled, silent, no clear help coming. If there was a punchline, I was stuck in it.

PRISM'S TAKE: A BABY STEP INTO CAREGIVING

So yes, caregiving is tough, and it can be tempting to stay blissfully oblivious before you’re called on to do it. But that’s like knowing an avalanche is coming, and instead of running, deciding to cozy up in your basecamp tent.

So to coax ourselves (and you) out of the tent, here’s some basic info provided by Maggie as a good place to start.  

Decoding the residential living options

• Independent living: An apartment/house designed for older adults who can live on their own without assistance (if aides are required, resident pays). Facilities often include amenities like wellness programs, pools, lectures, etc.

• Assisted living: Private/semi-private apartments or rooms for people who need help with Activities of Daily Living (bathing, dressing, etc.). Offers three meals a day and medication management. Nurses are provided, but family often organizes healthcare. 

• Memory care: Specialized residences for people suffering from dementia, offering increased security (so residents can’t wander), as well as tailored programming and design. Also includes more robust medical support and a higher staff to resident ratio. 

• Sub acute care: Rehab facility for recovery after a medical issue (e.g. hip/knee replacement, stroke, cardiac events), with doctors and nursing provided. Essentially functions like a hospital with the goal of getting the resident strong enough to return to their previous setting. 

• Continuing Care Retirement Community: One campus offering all of the above so patients don’t have to relocate as their health needs change. 
  

Nurses vs. aides

Nurses and aides differ in training and duties. 

• Aides help with more of the Activities of Daily Living. At Maggie’s mom’s facility, “aides aren’t allowed to touch medical equipment or medication — my mom has an aide twice a week that basically empties the dishwasher and changes her sheets. She’s allowed to remind my mom to take medication and to clean her CPAP machine, but she isn’t allowed to actually do it.”

• Nurses have formal medical training and administer medication, check vitals, and monitor conditions. They’re often covered by Medicare, though Maggie points out: “The nurses in the health center put her medication in pill boxes for her now — something she used to do but can’t anymore — and that too is an additional fee.”

It’s a complex world, but the more we talk about it the less overwhelming it becomes. Thank you for your service, Maggie!