Photo by Bruce Tang on Unsplash

I kept a spreadsheet itemizing each call I made on behalf of my parents, each text to the director of nursing, each plea with the nursing home administrator at the place I’d trusted with their care. The heat went out frequently enough that hall units were added on a temporary basis. When weather warmed and the air conditioning was not on yet, I ran to a hardware store and bought a fan — sweaty, visiting family members of other residents asked where I found it. The call button often quit working. My parents were given a dinner bell to ring if they needed help. But when a single aide was down a long hall, there was little chance the tiny bell would be heard. I asked over and over for an evaluation for both parents who seemed to have dementia. Other times, I asked to have someone trim their toenails. From brain health to the tips of their toes, promised care never came. I was too trusting for too long.

A big million-dollar renovation was underway in the front lobby when they moved in, which to me seemed like an investment in the older building; a good sign. However, as renovations swept the building — wallpaper added here, new paint there — the cosmetic changes seemed to become an excuse to leave residents in their rooms and out of the way. My mother stayed in bed for days. I’d insist an aide help her get dressed and move. There was no physical reason she could not get up, other than the fact that in her confusion and neglect, she’d given up.

I was told that staff had to respect the resident’s autonomy. She didn’t want to get up. When I asked, she was willing. I gave explicit, standing direction to get her dressed and up for the day. Unless I drove over to insist in person, it didn’t happen. She developed a giant blood clot in her leg which resulted in hospitalization, where she fell into delirium. Each time she made a backward step cognitively, she never fully regained. Still, I hadn’t gotten the requested help to diagnose her dementia.

The night she went to the hospital for the blood clot — after a full day of me hounding nursing staff to get her swollen leg checked — was a turning point for me. I’d asked and asked to get a doppler test of her leg, which is how they’d finally found the blood clot. At the ER, my mother’s nurse was waiting for the test reading to come over from the nursing home around the corner. We waited hours but no results arrived. He’d tried calling, but the phones were down (again). Finally, I got in the car and drove over and spoke to the night nurse. The hospital was ready to release my mom back to the nursing home because their ultrasound tech was off for the evening. If things were serious, they seemed to assume, the nursing home would have sent information accordingly. The night nurse looked shocked that anyone would send my mom back. She showed me her sign-out and written in pen was a note that she had a blockage “all the way up leg.” I snapped a picture to at least get that much information over to the ER.

Later, as I looked over the photographed sign-out, I noticed my father’s name too. Earlier the same day he’d had to miss an outside doctor’s appointment due to severe respiratory distress. (Only after an even worse event and an ER trip, was he diagnosed with lung cancer.) That day had been capped off with his wife being rushed to the emergency room for reasons he didn’t understand, and with his memory struggles, would be hard to grasp. He was still having trouble breathing. For his medical sign-out, all that was written was “drama Q.”

Drama queen.

I felt sick.

I asked the emergency room nurse if he could admit my mom overnight. I didn’t think she’d be safe going back to the place that was supposed to be her home.

Of course, I heard from the staff how short they were, how many of the folks passing through were from outside agencies and so the consistency they’d been accustomed to was gone. After the worst of nursing home COVID lockdowns, no one wanted to work there. It was difficult to find aides to do such hard work at relatively low wages. There were a few truly caring, talented nurses who doted on my parents, but most were on their first wing, the higher-level one where they’d been initially when Medicare was still supplementing their stay and covering therapy. Sometimes, when I could not find a single staff member on their wing, I’d rush to the other part of the building to find the one or two nurses I knew would help. I felt sorry for them — some days it was as if any safe care in the facility was riding on them alone.

I’m thinking a lot about the few months my parents spent in that place after reading a new New Yorker investigation, “When Private Equity Takes Over a Nursing Home.” The reporting by Yasmin Rafiei details how care consistently declined in facilities taken over by outside groups that invest in physical upgrades to attract more residents while chopping nursing staff to maximize the bottom line. While the firm central to Rafiei’s piece, Portopiccolo, is not the one that owns the facility where my parents were neglected, the patterns of failed care chilled me in their familiarity. The broken call buttons and not enough staff to answer calls when they were made; staff shortages; residents left in soiled diapers; administrative staff that could not be bothered to improve care even with repeated complaints.

Rafiei points to policy gaps: “Medicare pays five hundred and eighty-five dollars per patient per day; Medicaid pays two hundred and forty-five. Neither adjusts the rate for quality, resident satisfaction, or reputation.” Minimum staffing requirements were cut from the Build Back Better plan after pressure from the nursing-home lobby. Around the time of the 2022 State of the Union, the Biden administration announced a series of reforms, noting that as private equity investment in nursing homes swelled from $5 billion in 2000 to $100 billion in 2018, resident outcomes in these facilities have gotten significantly worse.

The facility I’d trusted with my parents had a good reputation locally. It was actually their second nursing home, and I’d searched carefully and in earnest because the care at my parents’ first facility in their hometown had declined over the pandemic and managing their care from afar was too difficult. After the drama queen incident, with two more ER trips between my parents, I managed to find a truly good facility. There are tiny wings with a nurse or two apiece, aides available at all times, responsive staff if there is a problem. They foster friendships between residents. There’s always something going on, such as gardening or happy hour. Visiting hospice there helped my father (and I) get through his final days. I trust my mother is safe there — and whenever I pop in, mindful to do so at unpredictable times, she’s usually out and dressed, sometimes with a friend. I quit keeping my spreadsheet. I no longer need to track the number of times I ask for simple help because the help just comes.

Only after I’d found this third facility, did I notice one of the Google reviews online from someone who had been happy with my parents’ prior facility “before it was sold! Now, I am so disappointed! There are not enough employees!” I looked back at their old facility’s website, which contained photos of happy thriving people — not taken at the facility — and noted a tiny logo for the new holding company at the bottom. I clicked around and found that it owns 27 facilities now across Ohio and North Carolina. Poking around more, I found that the owner lives in New Jersey.

Trusting strangers to help care for ailing or helpless people is a daunting step. With America’s looming “silver tsunami,” the need for proper care for the elderly will only increase as growing numbers of Boomers require help.

My parents had me when they were older, at a time when most women were not giving birth at forty. That means they are reaching this stage at a point in my life when I am younger than most of the other caregivers popping in and out of the nursing home. I’m among the first of my friends in my generation to go through caregiving for aging parents and I’m picturing the generational crisis looming as Millennials’ lives are upturned fighting for good care for their Boomer parents en masse. Over the past year, I’ve had constant interruptions during the workday as I tried to make my parents’ care team provide needed care at that last facility. I had to hire a care coordinator just to help me make calls and give nudges. I’m a freelancer and had to take off two months, largely unpaid, juggling various hospitalizations and end of life decisions. None of this is easy under the best circumstances, but there’s an oppressive guilt over having trusted the wrong place that I don’t think I will ever shake. Might my father have lived longer if I’d been able to get him proper care and a diagnosis sooner? Might his anxiety and dementia have been treated, making it easier for people to be patient with him before he died? How much worse were some of his last days because I was too naïve and kept believing the care I requested would really be given?

I’m left with questions and a heavy heart. I worry about the other residents still at that facility. From the Google reviews, it does not look as though things are improving. Reform cannot come soon enough. Places trusted to care for the vulnerable should be judged on their merit, on how successfully they meet the call of that work. For now, I’m finally far enough out that I think I can put together my own Google review and a letter to the health department — maybe in a small way, I can help a son or daughter in a similar situation avoid what we went through.