Last week, you asked the other legislators why your wife’s rights weren’t considered after she fell multiple times and contracted COVID-19.

It’s a fair question, but what I thought was, “Welcome to American long-term care.”

My sister and I know. Our parents had dementia at the same time, and while that was going on, we provided distance care for our aunt, who has severe mental illness. It’s been 20 years, more or less, with other ill family members woven into the tapestry.

Oh, we may not have seen it all, but we sure saw most of it. Or heard about it from agonized certified nursing assistants (CNA) or matter-of-fact residents who knew they could be next. These were for-profit and not-for-profit homes. (There were no county-owned places where my family lived). But it could be anywhere, including in family care.

There was the woman who fell and stayed on the floor for over an hour because her call button was on the wall, out of reach. There was oxycontin prescribed to a woman with a history of substance abuse—but don’t worry about addiction, her family was told. Until she was quickly addicted, and it was a sudden and overwhelming problem.   

The man with dementia who pulled out his own catheter and then lay in pain until overburdened staff could get to him.

People—so many people—lying in dirty or wet briefs because, again, the staff was overwhelmed and had to triage.

Nights, a CNA told me, where patients were given risperidone (an antipsychotic that makes you sleepy) because it eased the burden on the one—one!—college student in charge of two wards. One of those patients, a younger woman, was violent, but he was good at calming her down. (“There’s been a murder in my room,” she told me once, and when I went to see what was up, the man stopped me. “Yeah, no. It would be your murder.” Why was she there? I have no idea.)

In some places, patients are heavily medicated to keep them calm, and because staff can’t cope when everyone gives way to terror or despair, or falls on the way to the bathroom or decides to hit their neighbor—all at once. It helps in the short term, but the family sees that the person they loved isn’t home.

Assuming, of course, that family visits.

There’s speculation on who the “angels of death” might be: the idea that certain staff would be willing to put the suffering out of their misery. (On bad days, my aunt has begged me to get her on “the list.”)

I’ve seen staff and owners who wrecked their own physical and mental health trying to provide top-quality care to everyone.

All of this was before COVID-19.

The pandemic has made the situation exponentially worse. Some hospitals are discharging patients earlier and sicker because they need the beds. Assisted living and nursing homes are having trouble coping with fewer staff and patients who need a higher level of care, not to mention putting in COVID-19 wards. Communication between family, nursing home and hospital is breaking down. The system was fragile to begin with, and COVID has shattered it.

Ombudsmen keep an eye on patients who don’t have family and on nursing homes in general. Strict reporting requirements try to ensure that problems are caught early. But during COVID-19, ombudsmen visits have been limited. We’re relying on luck and the dedication of the staff.

What’s behind this? This is just my opinion, and I will emphasize that individuals are not at fault. This is a systemic problem.

People living longer, and with more disabling conditions, which means the old methods of long-term care are under strain.

Medicaid reimbursement to nursing homes is not enough to pay for our poorest and sickest. Costs are increasing rapidly for those who pay privately; we were just quoted $9,000/month for a family member who suddenly needs more intensive care and oversight. (Medicare doesn’t cover long-term care, but they will pay for a certain amount of skilled nursing each benefit period.)

There’s not enough staff. Sometimes that’s because they’re hard to find. Sometimes it’s because the money isn’t there to pay them what they’re worth. (Many don’t even make the $15 minimum wage that’s being proposed.)

In one area, immigrants were the caregivers and they were incredible, one and all. If you look at homes, check staff conditions; we’ve thought some close to slavery.

In-home care is, in general, better, but it assumes that family (and/or aides) are available to handle it and have the skillset and help to make it work. And while a grown child may love their parent, dementia or constant pain or sleep schedules that get them up every couple of hours—for years, remember—changes the balance. Especially when the person involved might weigh more than you do. There should be no shame in saying you can’t cope or that you need more than two hours of sleep at a time. 

And yes, the profit motive comes into it too. There was one couple who thought they’d turn their big house into a group home and make some money. They were referred to a group home owner who probably burst into laughter and then talked them out of it. I wonder if the 10-year rate of nursing home closures nationwide, and the turnover in owners, has something to do with that.

Not every place has these issues. Many are wonderful but the majority, I’d guess, are struggling. Our elderly and disabled suffer, and they can’t always tell us what’s wrong.

There’s no tidy ending here, no good final quote. There’s just exhaustion and slogging through until the end comes. And then you miss them, and think of what you could have done differently, and things you wish you hadn’t said. Our loved ones deserve better. The staff deserve better. And so do we. Because, someday, that will be us in those beds.

Annemarie Schuetz, like so many, juggles a job and caregiving. She writes for the River Reporter.