Wednesday, June 3, 2015

Your purgatory awaits you, Cream of Wheat included

        Say goodbye to everything you know. If you have dementia, it's over.
        Prelude: In yesterday's New York Times, an article describes how frail, mute, helpless elderly residents of care facilities "come alive" when they are placed in cheerful, home-like surroundings and given freedom, choice and affection. “People who were in wheelchairs are walking again. People who weren’t eating real food are eating again. People who weren’t talking are talking again. People who were losing weight no matter what we did are gaining weight.”

 (June, 2012) Each day when I come to visit the nursing home, there is a massive, bloated young man in the lobby who is strapped to his semi-reclined wheelchair, and who writhes and flails constantly, his head thrown back and his eyes seeming to roll in different directions. I am told that most of his brain was destroyed in a car accident, and he has been classified as "unresponsive." As one nurse puts it, "There's nothing upstairs but drool." He has what the insiders call "blunt force dementia," she says. Even so, I don't feel right just ignoring him.
        So finally, I stop. I lean over and whisper, "Good morning. Do you mind if I touch you?" I put my hand on his shoulder. I think I sense a slight relaxation in him, but I'm not sure. I gently place my hand on his cheek. "Ahhhhhhh!" he cries loudly. "Ohhhhhh!" I take his hand, which is curved around in that cerebral-palsy way, and hold it. He is laughing.
    In my younger days, I might have been embarrassed by the spectacle I am creating, but now I don't give a damn what anyone thinks. I tousle the young man's hair and whisper into his ear, "I am sorry for you. I'll see you tomorrow." He squirms and grimaces, extending his twisted arms toward me. When I kiss his forehead, he makes the sweetest sound: A little baby's high-pitched squeal.
    Like everyone else, I have been walking past him, eyes averted, reluctant to "stare." But I couldn't do it anymore. It seemed cruel, not respectful, to ignore him -- however badly that "him" is impaired.
      I am not comfortable with the lobby situation at all. Most of those with Alzheimer's are incarcerated in their semi-dark rooms -- which also seems barbaric -- but every morning, six or eight people, in addition to the "brain dead" young man, are wheeled into the lobby and left there, without their consent, as if on display. These elderly ladies with dementia aren't arranged in anything resembling a social gathering. Rather, their chairs are turned every which way, as if to make it clear that no interaction between them is expected or even encouraged. 
     It looks like it’s straight out of a film by Fellini, or someone like that, who forces us to contemplate the grotesque and the absurd. 
    What is grotesque and absurd is not the addled patients, but rather the way they are treated.
    I am told by staffers that these human beings -- who are prisoners, as far as I'm concerned -- are "intellectually flat-lined," that they "are total goners," that they "don't know what they want," and that they "can't talk." 
    "At this point, all that's left is the disease," a middle-aged nurse tells me offhandedly. "Their personalities have been destroyed."
    In my interactions, I found all of this to be patently false. 
    But for the time being, thanks to the nursing home staff -- and thanks to us -- they are The Living Dead. 
    Several of the clerical ladies sit behind the nursing station, just  feet away, gazing at computer screens, chomping on snacks and chatting among themselves. Aides dash back and forth. Administrative types with clipboards amble past.  
    No one seems to notice what I can’t stop noticing: People in need, people in anguish, people who are lonely, are sitting RIGHT THERE and being treated as if they were invisible. 
    No one wants to be burdened with the frustration, futility and guilt that comes with trying to cope with and comfort those in the grips of dementia. What the nursing home wants isn't the point. It is the institution's responsibility to do it. There are people who are trained to do it. The hugely profitable nursing home can afford to hire them, and they should be legally required to do so.
    The patients appear either to be totally out of it, with vacant eyes and gaping mouths, or they are in distress, as in, "Where am I? Is it tomorrow yet? Is my garden out there?"  
    One is always bent over, covering her face with her hands and gripping her scalp. Another has her head thrown back, causing her to gasp for breath, and her arms are opened wide, as if anticipating an embrace.  
    Doesn't anyone love them? Where are their families? Isn't there a neighbor or former colleague who could stop by and stroke their hair once in awhile? "No one comes -- what's the point, really?" a nurse says. "They don't know who you are. They won't know you've been there or you haven't."

    I wonder what or who is served by having them here in the lobby, deprived of their privacy. Most of them are nicely dressed, coiffed and even manicured, so maybe they are intended as an advertisement for the nursing home's thoughtful patient care. You should see the ones who are in their rooms, with matted hair, greasy skin and feces in their fingernails.
    If the patients  were getting any stimulation or sense of companionship by being out here, I'd be all for it, but they seem uniformly miserable to me. They presumably have no say in whether they can remain in the comfort and solitude of their rooms -- where they can sit with the TV or radio on, or stay in bed, or just lose themselves peacefully inside their own heads. They are props, preventing the lobby from looking so devoid of humanity. It seems like elementary-school punishment: OK, that's it, young lady -- you take your desk out into the hall for the rest of the day.
    How must it feel to be parked here, strapped to your chair, with everyone bustling past as if you don't exist? Or are you glad they're ignoring you, praying that no one stops and pats you and says something sprightly and condescending: "My, don't we look pretty today, in our Sunday best!"
  For the first few days that I visit, I follow everyone’s lead and try to ignore these people, to look the other way. Maybe that’s considered the polite thing to do, I theorize.
But maybe we can pour some light into their minds.
     Soon, I decide to break rank with everyone else and to make some small connection with these neglected human beings.
    At first, I just acknowledge each one with a smile, even though some look right through me, and some who appear to see me don't respond to my friendliness. I then make it a point to touch each one whenever I go through the lobby: I pat their shoulders, stroke their hair, briefly take their hands, and even kiss their cheeks. 
    I try to talk to them, which can be problematic, because some of them beg you not to leave them, or they ply you with urgent, unanswerable questions ("Where is the ice-cream man?" "Isn't there a swimming pool?").  
    One of them accosts me, scooting at me in her wheelchair, gesturing wildly and pleading urgently in German. I try to explain, in French, that I don't speak German. Finally, someone from the nurses' station responds to what's happening in the lobby. She laughingly tells the woman, in German, that I don't speak her language. 
    The woman grabs my hands aggressively and holds on tight. She stares intently, kind of angrily, into my eyes. She wants me to know something. She wants to be sure I "get it." Her knobby hands intensify their grip. Her stare is like an emergency beacon -- a silent scream. All I can say is, "I know. I'm sorry." I blithely stride into the dining room without permission and get her a carbonated drink with crushed ice. She seems stunned and enchanted, for the moment at least. She throws the straw on the floor and drinks it right down, grinning.
    I am deeply moved by an old, dignified, radiant Japanese man who has dementia. For hours, he sits -- regally erect and serene, with his hands folded graciously and a benign smile on his face -- as people walk by, looking everywhere but at him. He reminds me of the Asian Santa Claus, who is also the God of Longevity, except that he's even more majestic. He has very handsome, velour clothes. Another resident tells me this gentleman has six academic degrees and was fluent in Japanese and English.
    I am unsure, as I was with the brain-impaired young man, whether it is presumptuous to approach these people and to stroke them or hold their hands or hug them. Maybe they experience it as condescending or frightening? Or maybe they don't experience it at all. Maybe 'they' don't really exist anymore, except as shells. That's not my impression. I have found some "there" there in pretty much all of them.
    As for touching them: Surely they have the same right as the rest of us to have our personal space respected. But I want so much to convey my compassion that I find it very upsetting not to do something. 
    I am taking a risk with the lovely Japanese man, because he seems at peace, unlike the others, and I would hate to agitate him. I'm surprised to see that he seems aware that I am approaching, and he smiles. I put my hand on his shoulder. He smiles more broadly. I tousle his hair and smooth his flowing beard. He emits a gentle, whimsical laugh. Actually, is it OK to say he emits a gentle, Japanese laugh? Because that's what it sounds like to me, but maybe the conventional wisdom -- or the truth -- is that there is no such thing.
    I hug him and whisper, "I love seeing your beautiful face." He laughs again. He is so touching to behold. I feel like crying. Surely there is a better place for him than this.
    When I walk back through the lobby an hour or so later, on my way out, I wave to him, and he waves back. His eyes are bright.
    A lady with a frantic look in her eyes grabs me and says, "Take me. Please take me." She is struggling to get her wheelchair to move.
    I answer, "Where would you like to go?" I bend down to pat her arm.
    "I don't know where I am supposed to be," she says. Her eyes are so plaintive, so hopeful and childlike, it reminds me of when my father had dementia and kept asking, "Why am I here? Where is my mother?"
Jumbled thought in the demented mind, but thoughts nevertheless.
     She is one of the lobby "regulars," always forced to sit there hour after hour, and always dressed in beautiful, timelessly fashionable woolen knits. Her head, with its thinning white hair, is hung so low that her shoulders loom above it. Her eyes are a milky blue.  

    Her despair is wrenching. Whose mother is she? What was she like before? Can't anything be done to comfort her?
    Not in this place, apparently.
    I ask a nurse if I can take her to her room, because she seems to want to leave the lobby.
    "Elsie can't talk," the nurse says. "And she doesn't know what she wants."
    "She talked to me," I retort, walking way.

    Elsie has recognized me ever since that day. I always stop to touch her and whisper something into her hearing aid.
    She says, "thank you, thank you," in that deep, disembodied voice that the girl in "The Exorcist" has. She looks at me though her hazy vision, and says "thank you" again. Her gratitude at simply being acknowledged makes her situation all the more sad. 
    (My father was the same way: He forgot almost everything, but he never forgot to say thank you when we gave him affection or tucked him into bed.)
   From then on, Elsie and I have silly little interactions every day, but they are real interactions. She definitely has a sense of humor. Sometimes we just wave.
    One day, as I am leaving through the lobby I bend down and whisper, "You look so 'pretty in pink' today."
    I continue toward the door, and she calls out, "So do you. In blue!"
    Please absorb this! Can you see that she exists as a human being? They all do! They get less (much less) attention in here than dogs do at the shelter. They have been dumped here and left to rot. They can't escape. They can't cry out for help or demand their rights, and if they tried, they would be drugged into submission. 
    The vast majority of the people here -- and I confirmed this with the head nurse -- are either on opiates or other psychoactive medications. It's called "behavior management." 
    This is a human-rights violation. We need a class-action lawsuit. We need enforcers with some fire in the belly, not bureaucrats who sit at their desks day after day and sigh about being understaffed. 
    UPDATE March 2, 2012: Toby S. Edelman, who represents patients as a lawyer at the Center for Medicare Advocacy, said, “We could save money and provide better care if nursing homes reduced the inappropriate use of antipsychotic drugs for behavior management.” The American Health Care Association says, "
“Antipsychotic drugs are expensive, costing hundreds of millions of Medicare dollars. They also increase the risk of death, falls with fractures, hospitalizations and other complications.”

    One day, as I'm stroking Elsie, I kneel down so we can have better eye contact. Immediately, I regret having not done this from the start. She stares back at me and smiles.
     "So nice to see you," she says slowly, in that craggy "out of the depths" voice. Her hands are nicely manicured, as usual (on whose volition, I wonder), but her teeth are black.

    I am glad to have chosen to flout the institutional protocol and try to reach out to these people. 
    But now I realize why others might refrain. It leaves you feeling guilty and helpless. These poor people need a lot more than a quick kiss on the cheek or a passing wave. They need the kind of time and attention that nursing homes have chosen not to provide. It would cut into profits, and profits are what this is all about. I mentioned in my previous post( that the staff has been cut in half since I spent time here two years ago, after this institution was bought by two partners at Eduro Healthcare, which intends to amass a chain of nursing homes and turn them into a goldmine. They won't be the first. 
    The first time I took the plunge, and addressed the zombies in the lobby, I turned around to proceed on my way, and saw that two nurses were standing together, staring at me. One was the middle-aged blonde I irritated by persuading the two friends I was there to visit to reject half of the medications that had been -- without their knowledge or consent -- prescribed for them.
    I can't tell if their look is disapproving or resentful or what -- maybe neutral. I wonder if they think that the responsiveness I just elicited in their patient will mean that they can't treat him like a pet rock anymore, which will further burden their already too-busy days. I sympathize with their plight -- they are constantly on the go -- but I won't permit that concern to deter me from reaching out to him. 
     An estimated 3.3 million Americans (among 5.4 million sufferers) will be confined, isolated and lonely in the nation's nearly 16,000 nursing homes, which are among our most dysfunctional institutions, during 2013, according to U.S. News and World Report. If you live to be 65, there is a greater than 50 percent chance that you will spend time in one of them, probably more than once, for a few weeks or several years. The median stay is over 2.5 years.
    One in four people over age 85 spends time in a nursing home each year. Some 75 percent of those with Alzheimer's live out their final months and years in a nursing home. More than 50 percent of nursing home residents have no close living relative, and 75 percent rarely or never have visitors.    
    The notion that elder care should be de-institutionalized is a popular one. According to a poll released in September 2011 by NPR, the Robert Wood Johnson Foundation and the Harvard School of Public Health, 82 percent of pre-retirees (adults over age 50 who have not retired but plan to) and 78 percent of retirees are somewhat or very concerned about being in an institutional environment. They have good cause to be worried.

    (When my father was dying in the hospital, his beautiful nurse, Veronica, asked me if I was scared about not having had children. "Who will take care of you when you're old?" she inquired. These empty hallways and lonely rooms provide an unforgettable retort. Don't count on your kids. You're on your own.)
    To me, that's one of the saddest aspects of this whole situation. This degree of isolation must surely be frightening to anyone who is at the mercy of a fundamentally unpleasant institution. 
He's relatively lucky: a room with a view.
    Having no visits, no warmth, no outside contact to look forward to is particularly tragic, since most of these people have probably spent the better part of their lives caring for others. But the worst part, I believe, is that they don't have a protector: Someone who comes in and checks on things and holds the staff accountable.
    Many of the nation's nursing homes, as government and media investigations have been revealing for years, are scandalously filthy, negligent, abusive, grim, holding pens, even though they have improved over the past 30 years. I haven't visited the worst nursing homes, but I've seen the documentary footage and read the investigative reports. The nursing home I have been visiting for some time has many serious problems, but it does provide a better environment.

     In nursing homes across the country, shell-shocked people line the halls, drooling and tied to their wheelchairs. Until very recently, they were just like us, waking up each morning and looking forward to a pleasant, productive day. 
    Perhaps very soon, we will be just like them. If I am, I hope to have a Glock pistol hidden in my diaper and the capacity to blow my brains out.
    Let's face it: Nursing homes are mainly about urine, feces, disease and disability (oh -- and profitability). You can spritz the air with Springtime Bouquet all you want. You can even be conscientious about keeping patients cleaned up. But the death-and-decline aspect really can't be camouflaged, and most nursing homes don't even try. They are like gulags.
     It is a hopeless and sordid formula: Desperately sick and frail people plus the profit motive. The problems inherent in this formula are evident even in the best nursing homes. The industry -- and it is increasingly a conglomerative industry -- has designed itself expressly to be a focused, aggressive conduit for Medicare and Medicaid money. 
The aides are so kind, but understaffing pushes them almost to the breaking point.
     These corporations study every little provision in the federal guidelines -- and the ways in which those administrative provisions can be fudged, exploited or ignored -- and "patient care" becomes even more of a commodity than it already was. 
     More than $100 billion in state and federal dollars are going into the coffers of these dismal places each year. Residents and their families are paying tens of billions more.

UPDATE: The median bill for a private room in a nursing home is now $91,250 a year, according to an industry survey released on April 9, 2015.Nursing-home bills have been rising at double the rate of inflation over the last five years. One year in a nursing home now costs nearly as much as three years of tuition at a private college.

    I admit that I haven't had a lot of experience with those who have Alzheimer's, but I have interacted with several people who initially seemed to be "far gone," and it soon became evident that they weren't.
    I have found that there is a "here" there if someone takes the time to engage it. Toward the end, my own father appeared to be little more than a potted plant, basking in the sun. But you could take his hands and zero in on his eyes and call out to him -- wherever he was, in there -- and you could almost see the mist rising as Daddy surfaced and "came to." 
    He was still in there, to the very end -- and it was my real, thoughtful, ethical, empathetic Daddy, not some crazed, addled version -- and he was accessible, if the effort was made. 
    For what they are charging, I believe that these nursing homes,  should be required to provide some sort of "comfort caregivers," who would interact with these dear people to whatever extent is possible, even if all they can do is hug them, brush their hair, hold their hands, and maybe listen to music together, or look at a picture book. 
    For the time being, they are doing NOTHING.
    If the facility is unwilling to make a real effort to give those with dementia the greatest possible quality of life, then it should not be allowed to accept dementia patients. The fact is, though, that most of their residents have dementia and neither the government nor their consciences has motivated them to tailor their atmosphere and caregiving to the special needs of these people
    The government, which is footing the bill, should mandate active, tender, individualized care for those who are in cognitive decline.
Those with Alzheimer's can be very responsive when treated with gentleness and patience.
    We've all heard that people with Alzheimer's are "warehoused," but until you walk down long halls and look into each semi-darkened room and see these pale, gaunt human beings sitting there, with no stimulation, no affection, no respect, you probably don't comprehend the full meaning of that term. 
   They are slumped in wheelchairs, sometimes held up by a strap around their chests. Their eyes, if they're open, look as if they are suffering from post-traumatic stress. It is one of the most haunting, starkest realities I've experienced. And now that I've seen how responsive these people can be if they get the right kind of attention, it is even more heartbreaking to look at the lives they have now.
    Let's not forget that there's a very good chance we'll wind up in the same condition. I was shocked a few years ago to read that former New York Mayor John V. Lindsay had died, after having spent several years as an Alzheimer's patient in a nursing home. The last time I saw him, when I worked for his administration, he was tall, vibrant and gorgeous. It's hard to comprehend how far people fall. They just disappear from real life and are hidden away to rot in obscurity.

     Not long ago, these people were shopping, socializing, going to church, visiting with their children and grandchildren, maintaining and loving their homes, getting their hair done, planting flowers, watching their favorite TV shows and reading the newspaper with their breakfast, just like the rest of us. Now, they are slipping away, hidden in drab rooms, their eyes bereft of hope, and we're letting them. 
    We are failing to grab on to the glimmer that's still there and engage it, and let them know that WE know they're still people. Just look into their eyes -- not a glance, but a direct, focused overture. If necessary, look longer and deeper. Maybe you'll find more than you expected.
    Nearly 75 percent of those with Alzheimer's will die in a nursing home, and the vast majority of them, by that time, will be on Medicaid, having exhausted their Medicare benefits and their personal resources.

    I have visited two local Alzheimer's facilities, where those who can afford to pay for their care reside. 
    What's ironic and tragic is that it actually costs about one-third to one-half as much to be in one of these greatly superior units than it does to be dumped into a nursing home. But Medicare and Medicaid regulations only provide coverage for nursing homes, which is both an inhumane and a fiscally asinine policy. 
    There is a very limited program which provides Medicaid "waivers" to a few Alzheimer's patients each year enabling them to be moved from a nursing home into a dedicated dementia facility.
    The larger policy -- which consigns millions of people to a sort of purgatory for the massive financial benefit of the nursing-home industry -- must be changed. But it will require an assault on the  industry's aggressive, effective Washington lobby.
    As the number of Alzheimer's patients explodes over the next few decades, we must have in place a system that mandates respectful and affectionate care -- one that finds the "there" there in each patient and encourages it to flourish.
     It's hard to make dementia fun and pretty, but dedicated Alzheimer's units do try. At the ones I visited, the environment is colorful, sunny and attractive -- in sharp contrast to the dark, drab nursing home -- and there are decorations created by the patients everywhere. 
    The patients are up, showered and dressed and walking or wheeling themselves around. Some of them just sit there, expressionless, but at least they have company and are in pleasant surroundings. The more alert residents often ask strange questions, or blurt out their bizarre obsessions, or demand attention or affection a bit too aggressively, but their caregivers know how to placate them quite effectively. Their caregivers also know them as individuals who aren't some generic thing known as an "Alzheimer's patient," but as actual people, many of whom still have complex personalities, temperaments and senses of humor. 

    At one facility, they have an ice-cream social every afternoon. They go on outings, like a merry (and not so merry) band of pranksters. There is a very cozy Snoezelen room, in which a distressed or agitated resident can be consoled quietly and privately. It definitely feels a bit like a loony bin in there, but one still senses that what remains in each brain here is being located, engaged and respected.
    One nursing home director told me that these facilities only accept the most functional and manageable Alzheimer's patients. I don't know if that's true. I doubt it. My sense was that by providing the kind of attention their residents need, the facilities are able to improve the functionality and manageability of their wards.
    You shouldn't have to be rich or high-functioning to get this kind of care. If nursing homes weren't so intent on getting rich themselves, they could provide it.
    We must demand it.These are our parents an grandparents, or neighbors and former teachers, our fellow human beings who are essentially imprisoned in what are essentially snake pits of dread, darkness and isolation.
    Nursing homes that accept dementia patients -- and I assume that is virtually all of them -- must be required to provide the kind of care that gives them the best quality of life possible. That means hiring aides who are trained and specifically assigned to get these people out of their solitary tombs and into an area that is designed to HELP THEM rather than ignoring them -- a room that is bright, and which offers some hope that they feel cared for and respected.
   Nursing homes should be required to implement programs based upon the latest research that will encourage whatever capacity for pleasure and interaction remains in dementia patients. Over and over again, people who appeared to be "dead upstairs" -- and whom the staff had told me were "far gone" or "unresponsive" -- have awakened, just as my father used to do, when I gave them some attention and affection. Some respond to music or to looking at picture books. Some perk up if they are taken for a wheelchair "stroll" through the hallways. 
    Whatever their condition, there is no excuse for consigning them to the tortured lives they have now. Nursing homes are hugely profitable.

    Well over half of the nation's nursing homes have been acquired by rapidly growing chains in recent years, and although some improvements or economies of scale may have been achieved (I haven't heard of any), the corporatization of these facilities has obviously made executives, not patients, the primary beneficiaries.
If someone hugged her and held her hand, it would cost too much.

    The valuation of the nursing home industry more than doubled between 2005 and 2010, when it  was estimated at $258 billion. Experts project a steady growth will continue at annual rates of over 6 percent, resulting in a market with revenues of $353.5 billion in 2015.    
    Year after year, multiple reports by the Government Accountability Office and the Medicare Payment Advisory Commission (MedPAC) have shown that the Medicare program overpays skilled nursing facilities by billions of dollars, according to an October 2011 study by the Center for Medicare Advocacy. 
    For seven years in a row, MedPAC reported that aggregate profit margins for freestanding nursing facilities exceeded 10 percent. In 2007, the profit margin was 14.5 percent. 
    No wonder: In 2011, the average annual cost for nursing home care was over $111,000. At the nursing home I visited most often, short-term care was $113,000 (for the basics), and long-term was about $80,000. Care in inferior facilities (and they are terrible) was available for about $65,000.
    Despite these scandalous overpayments, the Centers for Medicare & Medicaid Services discovered on a national level exactly what I discovered on a local one: Nursing facilities have not increased their staffs; in fact, many have slashed them. 
    Where do the billions of dollars in overpayments go? 
    "The overpayments go to corporate profits and to excessive executive compensation, not to the care and services needed by residents," according to the Medicare Advocacy study.  
    Even in so-called nonprofit nursing homes, CEOs have been found to pay themselves as much as $1.5 million annually.

    These financial aspects of our nursing-home debacle are yet another example of how corrupted our government programs become, practically from the moment they are conceived.
    The real tragedy is the people -- these millions of dear people who are hidden away from us, as invisible and dispirited as if they were at Guantanamo.  
    One of the rarely reported cruelties resulting from the profit motive is that nursing homes tend to treat terminal Alzheimer's patients aggressively -- at great cost, and causing more anguish to the patient -- for one infection or illness after another, even those who are likely to die anyway within 18 months. 
    Studies published in the New England Journal of Medicine in 2009 revealed that a surprising number of frail, elderly Americans in nursing homes are subjected to expensive, futile care at the end of their lives, which merely inflicts suffering and prolongs the dying process, but provides "profit enhancement" for the institutions. The researchers assert that hospice care is more humane and cost-effective in such cases, but nursing homes have a huge monetary interest in holding onto terminal patients.
Here's what "the greatest nation on Earth" does to its elders.
Who did she used to be? Think of all the care she gave to others.
    I have walked into rooms that contained women who look similar to the one above. I bend down and take their hands and say, "Couldn't I bring you something? How about hot chocolate?"
    Their gratitude, their quivering emotion at even being acknowledged, is just too much. They shouldn't have to be so moved by a bit of kindness. They should be enveloped in kindness. That's what these places should be all about. 
    And residents need advocates.
    My uncle and my friends were lucky. They had an advocate: Me. I may not be the most upbeat and heartwarming person to have at your bedside, but I am ferocious in seeing to it that those I care about (or just met) are being treated properly.
    People in hospitals, and in nursing homes, need an advocate. Some may have the clarity and strength of will to do it for themselves, but I believe most do not.
    Even those who are not addled by age, pain or medications very likely feel too vulnerable to complain, or to assert their rights, or to question their treatment protocol. They don't want to get on the wrong side of the staff. They know that those people can make life pure hell for them. Nobody dares to rock the boat.
     When I had two friends in the same nursing home last summer, I spent about three hours each morning in the facility. I became a familiar face to dozens of people, both staff and residents. 
    The residents often felt the need to whisper to me about what was "going on" in the facility. They  usually begged me not to say or do anything, for fear of reprisals, but if their complaint was general enough that I was sure they couldn't be pinpointed as my source, I did mention the issue to the administration. 
    I must say that management's response reminded me of my work in prison reform. The wardens discredited their inmates, saying they are chronic troublemakers, or "mentally unbalanced," or that they "misperceive" things, or that the incident they've described is an "aberration." Or they say the problem is being "worked on." Or they assure you that it will be "looked into" or put on the agenda of a forthcoming staff meeting or even "studied by a grievance committee."
    In general this a joke, a delaying tactic and a strategy for getting rid of you. Both the prison wardens and the nursing home honchos know that you, their patients and their prisoners will either be released or lose hope (or die), and that they can keep stringing people along indefinitely. Meanwhile, the problems persist or get worse.
    Inspection information on nursing homes in my state, and around the country, reveals a sickening and frightening reality. In all the searches I've done, I've found almost no facilities that are regarded as excellent. You're lucky if you locate a convenient one that is "average." It seems odd that the word average is used, since the vast majority are below or "well below" average. The average ones should perhaps be called "darn good," relatively speaking.
    The data on nursing homes include one report after another about  inexcusable deficiencies in sanitation -- in the kitchens, patient rooms, bathrooms and the common areas. The failure to provide a safe environment -- to prevent falls and eliminate fire hazards, for example -- is surprisingly common.
    (Once these corporate guys see how easy it is to cut a little bit here and a teensy bit there, it becomes positively addictive, when they see how much money will be pouring straight into their laps.)
    Both administrative and patient-care staffs are being slashed. Thus, ratings for "quality of care" continue to decline. The incidence of infections associated with institutionalization -- such as MRSA, clostridium difficile (C. diff), pneumonia and tuberculosis are on the rise.  The amount of time spent per patient has dropped by half since 2005. Here is one result of decreased quality of care:

I always thought bedsores were sores, not deep, infected craters.
   Patient cleanliness and comfort are given short shrift, as indicated by the pervasiveness of bed sores and fungal infections caused by inadequate attention to incontinence care, as well as by problems associated with colostomy and ileostomy hygiene. 
    The administration of unnecessary drugs is one of the most often cited abuses. 
    I would love to know what percentage of patients are being administered drugs to sedate them, modulate their moods or sap them of energy and interest. I have no doubt whatsoever that narcotics are grossly overused; every person I met (who was able to respond lucidly to a question) was being administered the opiate Lortab. 
    It makes things so much easier on the staff to just knock patients out. But it is also a sort of partial murder. They're still alive, but they're cognitively impaired, and their motor skills are affected.They are absolutely unable to fend for themselves.
    Another major failing, according to federal surveys is "providing a positive, supportive and caring environment." It requires staffers who aren't dashing around, feeling chronically behind schedule, to create such an atmosphere.  
    Incidents of emotional, physical and sexual abuse continue to rise, as does the use of physical restraints. These are further evidence of employees who are poorly screened, trained, managed and supported.
    The Centers for Disease Control receives 35,000 complaints of nursing home abuse, gross neglect, and exploitation annually, but advocacy groups estimate that only one in five instances is reported.
    Residents report interference with their mail, phone use and access to the outside world.
No place to go. All day to get there.
    Critics say the "wait time" after a call button has been pressed has increased to a degree that endangers patient safety. Each patient with whom I've spoken has told me that it was not uncommon to wait 45 minutes for an aide to arrive, and there were times when no one ever responded. The call button might be pressed to say "I need water" or "I need my undergarments changed," or it might mean "I think I'm having a heart attack."
    Medications to "manage" or sedate patients, mentioned above, are used to enable cuts in patient-care staffs. Some blame these drugs, which affect cognition, appetite and motor skills, including balance, for the rising number of falls among patients, often resulting in broken legs or hips.
I wonder if she is having any thoughts. Does she have hope, or is she resigned to dying here?
     Fewer than 25 percent of doctors affiliated with nursing homes graduated from an American medical school. This may or may not reflect on quality, but it makes one wonder what is going on. 
     At first, I didn't look into the rooms when I began visiting the nursing home each day.  I didn't want to violate anyone's privacy or seem voyeuristic. But the investigative streak in me ultimately took over, and I became as observant as possible without being intrusive.
    Nursing homes are very sad places -- there's no way around it.
Most people here are old and frail, lonely and frightened. 
Someone to love, even if he can't love her back.
 They lie in bed looking half-dead or anguished, or they sit in front of the TV with gray faces and vacant eyes. 
    Just over half of the country's nursing-home population suffers from dementia. This condition predisposes them to an array of other conditions, particularly pneumonia. Most of them have urinary and/or fecal incontinence. 
    Many of them are on liquid or pureed diets, and quite a few must be hand-fed by an aide. 
    Congestive heart failure and diabetic complications -- including amputation -- are among the top reasons people are placed into nursing homes. Those who have a broken limb or joint, or are recovering from pneumonia or a stroke, are most likely to recover and be released within one to three months.
    I mentioned in my previous post that when my uncle was in a nursing home several years ago, the halls were bustling with cheerful, attentive, skillful aides. They were delightful. One couldn't help but smile.
    Now, the nursing home has been bought by a corporation that was created in 2009 for the purpose of acquiring and "monetizing" nursing homes.
    I wasn't aware of that until I had spent quite a bit of time there last summer,  but the first thing I noticed when I entered was the emptiness of the halls, the lack of cheerful labor going on around me. The staff has been slashed.
    The aides all seem to be Mexican now, unlike the formerly international composition. I can't imagine why that is the case -- maybe those from Eastern Europe were able to find better-paying jobs -- but those who remain are all wonderful people, with an erect bearing, a warm smile and a purposeful stride. They exude cleanliness and always wear crisp scrubs. Their hair is pulled away from their glowing faces. 
 She treats patients as if each was her own mother.
    These poverty-wage workers display the same dignity, decency, professionalism and compassion as those who were here three years ago, but the understaffing is pushing them nearly to the breaking point. Some of them are so flushed and out of breath that it is alarming. 
    When a request is made of them, as they dash around trying to attend to too many patients, they remember to take care of it for you, or they don't. If they don't, it certainly isn't their fault. I can't imagine them working any harder than they do. 
    Time after time during my visits to this nursing home, I have seen these "underlings" go beyond the call of duty, gladly helping you in ways that are someone else's responsibility, even as they are trying desperately to fulfill their own responsibilities.
    The nurses, who also have a lot of responsibility since there is rarely a doctor on site, are also pushed to the limit. One morning I ask the nurse if this is a good time for me to pose a couple of questions about one of my friend's medical issues. 
   “Not really -- I’m doing morning meds,” she says. I ask her when would be a good time. “It’s never a good time. I’m running around all day. You might as well do it now,” she says, her impatience evident. I ask how late she works. “Until we’re done,” she says – a shift that lasts at least 12 hours. 
  The wonderful Hispanic men -- and a few women -- who work in the kitchen -- and who are also laboring frantically -- display a pride and finesse that would one might expect in a first-class restaurant. They are gracious, responsive, deferential people who manage to produce intelligently conceived and beautifully presented meals three times a day (plus a bedtime snack), despite the hurried institutional imperative. Their elegance in this institution is quite amazing; they have a modesty, a chivalry and a sense of propriety that one rarely sees, except perhaps in old movies.
    I have no idea why or how this is the case, but someone deserves a medal for such extraordinary training. 
    From what I read, it is exceedingly rare. Nursing home food is generally regarded as slop. What my two friends are being served is attractive and tasty, although I think it needs to be improved nutritionally. Too little fresh produce and whole grains. Too much fat and sugar. But it is the kind of food that most people enjoy, and it is prepared with great attention to detail.
    It is significantly better here than it was at the highly regarded hospital in which my female friend spent several days. I was awed to see how the nursing-home kitchen staff is able to cater to dozens of special needs, requests and restrictions. The menu is varied and enticing. The coffee is excellent. If the gentleman who manages the kitchen had been in charge of the whole institution, it would be a model facility.
    In general, nursing home food has been characterized by the federal Health and Human Services agency as "substantially worse in flavor and nutritional value to that served in a typical prison."
    The common areas of the nursing home still look fairly clean, although they are becoming a bit shabby and faded. The rooms are another story. They are cluttered and chaotic. The carpets and chairs are stained. I know for a fact that at least some of the stains are from fecal material, because I was there when they happened. The staining is widespread. 
    The bathrooms, at least when I saw them, were haphazardly cleaned, with grimy fixtures and a moldy or mildewy residue in the corners of the shower. 
     The sinks are tiny -- so small that no necessities can be left on them. The aides put toothbrush and toothpaste, water glass, skin lotion, etc., in a medicine cabinet that is entirely out of reach of someone in a wheelchair. A patient in a wheelchair, which virtually all of them are, can’t even reach the soap dispenser or the paper towels in order to wash his or her hands. 

    The big plastic shower chairs that aides bring in if a patient wants more than a sponge bath may be clean, but they don't look like it. They are stained, and they often appear to have fresh, sticky spots on the seat, on which the naked patient must sit. A seated patient cannot reach the soap dish (there's no soap there anyway) and there is no place to put shampoo or conditioner. The shower itself is extremely difficult even for a healthy, upright person to turn on and to adjust for temperature. There is very little water pressure. I gave showers to each of my friends, and I was so flushed and flustered afterward that I had to go outside for some fresh air. 
    If the plight of strangers doesn't move us to demand reform, maybe the specter of our own "golden years" will. I feel sure that the people who are virtual prisoners in nursing homes across the country would never have imagined that it would come to this.
    It can happen easily. It can happen fast. We can hope that our spouses or children will take care of us -- or at least assertively monitor our care -- but we certainly can't count on it.
    We need a "peoples' lobby" to counterbalance the rich, focused manipulations of the nursing-home industry. We need to demand changes in Medicare reimbursements that will enable those with dementia to get appropriate care. 
    Until we do, we are complicit in the slow, solitary, agonizing death of a big part of a whole generation. Soon, it will be our turn.

THIS IS THE FOLLOW-UP ARTICLE TO "nursing home netheworld"

See also "Your crime: dementia. Your sentence: Solitary confinement.

This excellent blog post contradicts pretty much everything I have to say.
UPDATE: comments on the above-mentioned post, as well as new books, and several articles in top U.S. magazines (such as the New Yorker), contradict Dr. Gillick's contention that "enlightened" approaches don't have any impact, and support my conviction that they can be transformative.