Journal of the Plague Year (#8)

Berkeley, CA 5/11/2020 – Lacking, as we all are, anything like responsible, responsive, informed sources about the COVID – 19 Pandemic, we cluster, knowingly or not, around a few people who seem worth listening to.

The major one in the scientific penumbra is Dr. Anthony Fauci. The major one in the political spectrum is New York Governor Andrew Cuomo. We’ll hear more about Fauci in future weeks.

This week Cuomo, in an aside during his daily, nationally televised press briefing , made a memorable understatement. “Now is not the best time to put your mother in a nursing home.”

Now is, most often, not the best time to have your mother die, either. Yet into such nursing homes coronavirus-bearing or at risk mothers and others continue to pour. Not into hospitals, even the many that frantically ramped up their facilities to treat them. Hospitals make it clear that after they’ve done whatever they can in their emergency rooms and intensive care units towards restoration or at least palliation of their patients, they are not the right places for further housing, short or long term.

28 years ago, my mother and father died within months of each other in a Florida nursing home. Both had told my sister and I, that they did not want to languish and perish in such places. But there was no choice. We didn’t have the money to hire 24/7 home caregivers. When we tried, we found out that we would have had to move to Florida to coordinate their care. Sometimes the workers we would have had to coordinate had serious reliability problems, because they had other jobs and family responsibilities. The law didn’t allow them to give injections. Often they couldn’t read simple instructions. Which was part of why they couldn’t sort out medications and vitamins (at one point my father was taking 16 different pills a day, in different doses at different hours). 

Most of the people we interviewed were empathetic. But all were low-paid with no vacations, and, ironically, no health benefits. So home care was out, and for my parents a nursing home was the only alternative. We found one that was clean and relatively quiet, except for occasional screaming by demented residents. It was clear from a tour of the place that many patients were being warehoused, sometimes for months or years, and rarely left their beds. Doctors, usually their regular doctors, visited daily. 

But the Benskys had developed, during their thirty years as Florida in-migrants what was typical for their demographic: medical dependency. They saw doctors three times a week or more which required traveling in medical transport vehicles, which they found uncomfortable and unreliable, especially in the rain.

These “specialists” ran what came to be known as Medicaid Mills. Waiting rooms filled with elderly people who had little else to do but wait. Almost all of their appointments were useless. How many new dental plates did an elderly man need? How many new prescriptions for glasses when reading eye charts at home showed no change in vision?

When their doctor of twenty years, an old-fashioned general practitioner with a varied practice, retired, he sold his practice to one of his assistants. Very shortly afterward, we got a letter with the news that we were now the clients of a multi-practitioner office. No single doctor would be in charge of my parents. You made an appointment (walk-ins had been possible with the now retired doctor) and saw whoever was on duty. That doctor usually knew nothing about you and your situation beyond what was collected in voluminous, unindexed folders of “notes.” Which, many times, your doctor of the day hadn’t even read.

As their health declined, my parents, both in their upper seventies, became more and more dependent on ambulances to emergency rooms for all medical intervention. Waiting for appointments was out of the question. And, increasingly, doctors wouldn’t even schedule them for visits. The reason, I was told by an informative records clerk at a nearby pharmacy, was that the medical practice where they were now clients was not getting a high enough return for their care. Higher priced meds, for example, were always coming “on the market.” And higher-priced remunerations to doctors who prescribed them were “coming on the market” as well.

Florida was then, and remains today, what the Miami Herald calls the “poster boy” for medical scandal. Just a year ago, a nursing home chain operator was convicted of money laundering, kickbacks, bribery, conspiracy and obstruction of justice. Total estimated amount stolen: $1.2 billion. Unlike most of his co-delinquents he was tried, assessed a big fine, and got a long prison sentence.

And that was well before the current pandemic, where reports of new swindles and scams have grown like palm fronds blowing in an Atlantic coast hurricane. Republican-connected operatives have carved a glide path to what they hope will be quick fortunes. Trump’s son-in-law, Jared Kushner, is the go-to guy in this area, adding to the areas where he has no business being. He is said to do nothing but show up, hire inexperienced and unqualified people like himself, and wait to get a word in edgewise with El Presidente.

When will we know about what’s now going on, as billions of dollars slosh around? Efforts to find out will not be assisted by Florida’s governor. A Trump acolyte, he recently issued a directive ordering the state’s 67 county Medical Examiners offices to not release information about coronavirus deaths. Or coronavirus cases among health care workers. “Privacy concerns” are being cited, although no names are being reported, just demographic information.

My Florida parents lived in a modest one-bedroom apartment in a neighborhood of hundreds of such senior citizen developments. They knew who died in in their area within hours. If they needed confirmation, county death (and birth!) records were in their daily newspaper. But try to find out – as I once did – the business results of the medical group that had taken over from their doctor when he retired and you come up against serious opacity. Requiring expertise in forensic economics, law, abundant time, and the patience to continue requests made, ignored, or misinterpreted.

The problem most often cited by my parents was not financial chicanery, however. Or cost, which Medicare covered. Or the availability of staff. It was much more personal. Theft. If patients arrived with a wristwatch, a wallet, a necklace, or even pocket change, it was usually gone within hours. Even my father’s false teeth, kept in a glass by his bedside, disappeared. Inquiries were met with smiles, shrugs, mournful apologies. After I became friendly with a few staff members, and started conversations with Haitians in their Creole and my French, and Cubans where I tried to decipher their rapid-fire Spanish, I was told that it was all the fault of the Haitians or Cubans, depending on which group I wasn’t then talking to.

Thirty-eight years later, it was my turn. And, sadly, now it may be yours as well.

A year ago I was placed, involuntarily, in what was supposed to be a rehab facility. Emergency Room treatment and, just hours later, major surgery had left me unable to function. I had incurred excruciatingly painful multiple fractures, and serious gastro-intestinal wounding, in a sudden accident. The hospital (Kaiser San Francisco) treated me thoroughly and well. But made it clear that they didn’t do post-op housing, once dangerous symptoms (fever, bleeding) were controlled. 

I had little choice about where to go before I was able to go home. So I was sent, via an agonizing ambulance ride, to what is generally referred to as a nursing home. 

It seemed reasonably clean. There seemed to be a lot of people working there, Unfortunately it quickly turned out to be the worst, most traumatic, frightening, saddening, and infuriating eight days I’ve ever spent.

The staff had, basically, three tasks. Attend to patients’ needs. Feed everyone. And distribute meds.

But patients needs were routinely, almost systematically, ignored. Most of us needed help, often a lot of help, doing things we had taken for granted all our lives. Like putting on slippers. Like getting to, and using, a bathroom. Like taking sips of water. Like shifting positions in bed, to try to find ways to endure pain. 

If you managed to get out of bed you were leaving bed linen that was often soiled with your uncontrollable bodily fluids. If an aide happened to be in your room, or passing by in the corridor outside you might get help. Or they might ignore your voice. If you pushed the call button a distant chime went off. A flashing light (visible only at night!) clicked on outside your room. Often it was ignored.

I’d had previous major digestive issues and am a vegan. But even getting oatmeal and toast and apple sauce in the morning, or tofu and rice and bananas later in the day was problematic. It began to feel like I was slowly starving, which I was. I lost 35 of my 195 pounds in two weeks.

The much awaited Meds distribution, three or four times a day, was another major problem. In the hospital where I had my emergency surgery I had quickly become dependent on painkillers, which came regularly, in pills and through IV’s. The nurse’s assistant who brought them asked about their effect every time. And immediately texted or phoned a doctor if it appeared that a change might help.

In the nursing home, none of this happened. One time there was a two-day outage for Ibuprofen. Another time I was offered an opioid which was counter-indicated for my G-I problem (I took it; the pain got better, the GI worse). The aide pushing the meds cart around the hall was often late. Her computer, which kept track of where she was and what she was providing, often didn’t work. It needed re-booting often. I saw it was a ten-year old bottom-end Dell.

Worst (though there was a lot of competition) of all was a false diagnosis that I had somehow brought with me a contagious virus. Where this diagnosis came from was never established. Blood test? Urine test? Fecal samples? In any case everyone who came into my room for whatever reason – staff or visitors – had to put on the now familiar PPE headgear, masks, and body-enveloping gowns. (This only began on Day 3; somehow they missed it before then. If I really had had a virus, I could have contaminated dozens of people.)

It was June, and we were in the midst of a heat wave. The temperature in the room was stifling. Although there was a window that opened we were urged to keep it closed, so as to not interfere with the air conditioning (which wasn’t helping anyway).

I was urged to “move around as much as possible.” So, awkwardly, painfully and usually alone, I grab-barred my way to a walker. And then collapsed into a wheelchair. After a few days I managed to maneuver into a hallway where I propelled myself a little down a corridor. Then a little more. Finally, all around the oval and back to my room.

Except one day I was confronted by an angry staff member who asked me where I was going. And didn’t I know I was quarantined with a virus? Where was my PPE? I told her, truthfully, that no one had told me I needed to wear it. That in any case I couldn’t put it on by myself. And that waiting for help was usually futile. “Well in that case you have to stay quarantined” was her parting shot.

I started crying. If I’d have known how, or believed in it, I would have prayed. I tried to tell myself that I needed to want to live. To take it by the moment. To hold in my heart my three infant and toddler grandchildren, whose lives I wanted to live to be a part of.

Miraculously, the chief RN at the facility happened by and saw me, half dressed in a sweaty T-shirt, half seated in a wheelchair, sobbing uncontrollably. I told her I could not be physically confined like that, being cornered anyway by immobility, pain, insomnia, delirium, and starvation. 

She was sympathetic, possibly because I was one of the few inhabitants (there were about 50 of us) who could carry on a conversation. Most of us were medicated into semi-consciousness or had lost our speech faculty.

She suggested the best hours for corridor exercise, and I only went then. I never put on the PPE gear. And, as it turns out, I shouldn’t have had to. Several months later I was re-tested and found virus-free. A doctor (there were none on duty at the Rehab place, although there were supposed to be) had been needed to straighten this out. Unfortunately one was on vacation, her substitute had an out-of-town emergency. A health aide mumbled something about how “it happens all the time.” What “it” was I never found out.

What I did find out was that my Medicare plan was paying around $400 a day for my totally inadequate care. An administrator informed me that If I wanted more individual attention I would have to get a private room, rather than the two-person sweat lodge where I’d landed. And that would cost twice as much. And no, I couldn’t just pay the extra part above what Medicare paid, I had to absorb the entire sum because of the way their fee structure was set up.

Although I could think and talk somewhat rationally I was still very traumatized. I could not shut off my mental “replay” button, which was stuck on images of the accident. I also could not do some everyday things like hold a pen steadily enough to write. Sending a text of more than a few words took forever, as my fingers usually hit the wrong keys. I could not read more than a sentence or two at a time. And I certainly couldn’t negotiate the fiscal or medical matters I was confronting. 

I knew I was fortunate in having friends, neighbors, and family to try to help me. They brought me food I could eat. A charger for my phone. A few books in which I grazed. And the sports section of the Chronicle.

I think of all this as I read that in the current Pandemic, custodial places like the one I survived are the major places of CODVID-19 death. 25,000 of the nationwide total of 78,000 deaths, as of this writing, are estimated to have taken place in nursing homes. In California the latest official number is 40%. Though both numbers are probably very understated. 

The Trump gang tries to focus on “reopening,” with a glorious nation once again charging forth, destined for affluence, albeit radically unequally. And, of course, gratefully re-electing Trump. The cost, as Philip Rucker writes in the Washington Post, is a “grim steady, daily accumulation of lonely deaths.” A disproportionate number of them in nursing homes. 

There are very few that are publicly owned, even in places like San Francisco and New York, which have good public hospitals. They’re privately owned because those who own them, in the words of a recent New York Times headline, are “Setting Aside Quality Care for a Profit.” Like the bloodsuckers who “took care of” my parents decades ago. Like the owners whose facility so neglected me. They have one underlying belief. The bottom line is the bottom line. 

“Private equity” (Venture Capital aka Vulture Capital) buys up nursing homes. Then staffs are cut to to increase profits. Equipment isn’t stockpiled for emergency needs. Self-deals for operational items are made through new corporate structures. Bankruptcies are filed. Tax breaks and tax evasions come into play. The whole vast chicanery that the U.S. business/political system can, and does, deploy, goes into action. (NY Times, 5/8/2020)

Where is the adult supervision in all of this? 

Easy. There isn’t any. And as long as the electoral industry stays fueled by the same mega-bucks folks who now run it, there won’t be. Biden backers, eager or reluctant, should remember what his day job was for 36 years. Senator from Delaware, legal headquarters for corporations that revel in lack of transparency, low or no taxes, and legal impunity.

What about states and cities? Shouldn’t they be doing something? When they staff up to make it seem like they’re trying, it doesn’t look so good.

One local example. This week an “Economic Recovery Team” was named for Silicon Valley. The mayor of San Jose, Sam Licardo, organized it. There are 58 members, representing business and commerce, ranging from banks to educational institutions, and, of course, health care. There is no one identified as being from a neighborhood organization, a church, a PTA, a social justice group, a union or a student government organization. Or environmental activists. The only person with words like “environment, policy, and social initiatives” next to her name is Lisa Jackson. She’s a corporate officer for Apple.