Sunday, March 27, 2011

Your crime: dementia. Your sentence: solitary confinement

This should be our next civil-rights battleground
Don't feel bad. He doesn't even know he exists.
    Do you ever envision yourself as old and alone? Can you imagine that you -- that active, attractive, sociable you -- might someday essentially be a prisoner in an institution that runs your life? And that nobody will care -- you will be forgotten?
    Maybe your memory and your volition will have deteriorated, but you will still be you. No one seems to realize that. Each day at the nursing home, you get washed off, spoon fed, strapped into a wheelchair, and abandoned in your darkened room. Deeper and deeper you sink, into inconsequentiality.
    You grow pale and gaunt. Your eyes are increasingly haunted. You will be here until you die. Someone needs to be shouting: "WAIT A MINUTE ! THERE'S A PERSON HERE!"

    I feel quite sure that the old people slumped in nursing-home "cells," lit only by a TV day and night, didn't expect that it would come to this.
    I bet they assumed they would grow old gracefully, in their homes, with family and friends for enjoyment and support. They probably pictured music and sunshine, houseplants and home-cooked meals, their pets, their own bathroom and their own bed. They dreamed that their favorite things, accumulated over a lifetime, would surround them, even as the infirmities of age descended.
    Don't we all?
    But the system isn't set up that way. Once you get dementia, the system doesn't view you as a human being any more, even though much if not most of your humanity remains intact, despite the decline in cognitive function. That doesn't matter: It's 'off you go' to one of the grayest, most spirit-killing environments imaginable. 
    Once you're there -- isolated and vulnerable -- you're likely to go downhill fast.You will be sedated, to make you easier to manage, which expedites cognitive decline. You will be forbidden to walk -- since a fall might cause "liability problems" for the institution -- so you're confined to your bed or a wheelchair. In no time, you are considerably weaker and more frail than you were when you arrived. Your helplessness, your isolation, your confusion, your fear, your submission to and dependence upon people who don't know or care about you, rob you of your autonomy. You become part of the nursing home's mindless herd. You become "institutionalized" -- profoundly stripped of your volition and sense of identity. You give up. You are a goner, as far as everyone is concerned, except that you are bringing in thousands of dollars a month to the profiteers who have incarcerated you.
    But you only seem to be a "goner." As I will describe farther down, I interacted over and over again with those I was told were "brain dead" and had "nothing upstairs." They weren't brain dead at all. They were severely traumatized, almost to the point of catatonia, like concentration-camp prisoners. But all it required was a kiss on the cheek, a stroking of hair, a deep look into their eyes, and a question -- How are you feeling? Can I help you in any way? Would you like some hot chocolate? -- and their selves resurfaced rapidly. Those whom I was told couldn't talk talked to me. They were poignantly, heartbreakingly responsive to affection. They asked and answered questions, or -- at they very least -- they smiled gratefully at me and squeezed my hand. A couple of them had quite a sense of humor. But they had been dumped here to rot, and as far as everyone was concerned, that's just what they were doing.
    How can we let this go on?

    The status quo is unacceptable.
     Everything possible must be done to enable people to remain in their homes, as long as they are safe and content there. We must pressure Congress to END THE NURSING HOME MONOPOLY. We must stop dumping our cognitively impaired fellow human beings into institutions that warehouse them for profit, especially when -- for the same amount of money, or less -- they can be cared for in their homes. We must demand that facilities which accept dementia patients employ staff who are trained to comfort, engage, enhance and expand these residents' lives. We must also demand that patient advocates be employed to ensure the competent and humane treatment of all nursing home patients who, for whatever reason (for many, it's fear of retaliation), can't fend for themselves. These advocates should not be paid by or answerable to the nursing home. They should be independent and derive their income from a pool of funds that would be included in the licensing fees the institutions pay. Believe me, they can afford it.
    The vast majority of Americans strongly prefer "aging in place" -- remaining in their homes, even if they develop physical or cognitive disabilities. With varying degrees of help, that would be possible in many if not most cases.
    But it's not working out that way, and you can probably guess why.
     It's POLITICS. Oh yeah, and MONEY.
    It would cost the government far less to help us remain at home or, if necessary, to move into a facility that is dedicated to providing the best, most comfortable, most stimulating and most understanding care possible for those with dementia. But neither of these options is covered.
    What is covered by our "Dear Leaders" in Washington is the NURSING HOME GULAG.

    You can't age in place, because the system that would help to fund that humane approach is corrupt. Hot-shot lobbyists have ensured that billions of dollars go into nursing-home coffers every year, rather than helping you live with as much freedom, comfort and autonomy as possible. As a result, nursing homes have become so profitable that they are being rapidly bought up by speculators, who amass chains of homes and heartlessly slash staffs (often by half) to increase income. They have evolved from healthcare facilities into commodities.
    The Wall Street dudes have noticed this delicious potential for easy money.
    Because these chains have become so hugely profitable -- at the expense of neglected patients and facility maintenance --  they are being gobbled up by large private investment groups, according to the New York Times -- investment groups that don't give a damn about old people or health care. They acquire all kinds of businesses, and all they care about is the bottom line.
     For example, National Healthcare Corp., which has amassed dozens of nursing home chains, reported an 80 percent increase in profit in one year, a 2010 article in Business Week reported. 
     In New York alone, profits exceed a billion dollars a year, the Attorney General's office has disclosed.

    The rather hapless state and local agencies that are supposed to protect residents'  rights and monitor their care are underfunded and overwhelmed. Medicare and Medicaid are ineffective, bloated bureaucracies that perversely continue to flood, with our tax dollars, the least attractive and least efficient caregiving model we've got.
    In my state, those whose job it is to protect nursing home patients are an utter failure, and they know it. Every person with whom I spoke said "you're asking all the right questions," and "you raise some challenging arguments," and "you're preaching to the choir."
    But over and over again, their excuse for being unable to fulfill their mandate was, "it's complicated."
    I was told, "It's people like you, with a fire in the belly, who can get the reform we need. Be sure to contact your legislator."
    How ridiculous! Get some fire in your own belly, why don't you? Or give your job to someone who's got it.
    It is our paid officials who are in the best position to design and get funding for adequate programs. We should surely support them in their efforts (just as we should support our relatives and friends who are huddled in the corners of nursing-home rooms, their heads in their hands).
    The state-mandated Office of Public Guardianship "serves as guardian and/ or conservator when a vulnerable adult who has no other person able and willing to do so and that we have petitioned the court and been granted that authority by a court order," according to the administrator. The "difficult part" is that the agency can only afford to serve 225 people in the state.

    When I asked how many thousands of people in the state have no protector, no guardian, no friend or family member who watches out for them and makes certain they are being treated properly in nursing homes, nobody knew. The Commission on Aging had planned to find out, but never did. It was "complicated," and, "We have no funding to address broad questions such as these."
    It is accurate, the administrator added,  "to say that our current system does not have the resources to serve all the vulnerable incapacitated adults in our state."   
    Why can't nursing homes be required to provide a list each month of the residents who have no guardian or protector? No one in the bureaucracy was inclined to provide an answer. It seems so simple. It is not an onerous requirement. It's the least we can do: To maintain a database of people whose welfare is not currently being monitored. 
    For the time being, these are the Forgotten People.
    Think how easy it would be to become one of those. Think how hard it will be not to. The statistics aren't in our favor, if we live to be over 80.
    Certainly it's true of all of our social-service programs that the needs of many people can't be met, but at least those people (most of them, anyway) have some capacity to fend for themselves. 
    One official assured me, "Facilities are required to report abuse or neglect of a patient."
    That sounds like an extraordinarily naive assumption.
   Each county in the nation has an Ombudsman for Long-Term Care, but they are clearly unable to meet the need. In my county, for example, there are three staff members who purportedly cover 90 institutions and 5,000 patients. They spend most of their time "putting out fires," the program manager says. 
    He also says that his office "advocates for what the residents want," but of course the most vulnerable patients can't verbalize what they "want," even if they could find a phone book, locate the appropriate agency and summon the courage to make the call. It can't be done. We need a proactive approach for protecting those with cognitive impairment.
    But we need to stop placing all the blame on the system for the gulags in which millions of our parents, grandparents, friends and neighbors are confined, and take a look at ourselves.
    As I roamed the halls of the nursing home in which my mother was recovering from a fractured pelvis, what I saw was helplessness, hopelessness and loneliness. Where were their loved ones?
    "Once they get put in there, their families pretty much disappear," a county official told me.
    When I worked in prison reform, I was distressed that hundreds of thousands of people are shut away, out of sight and mind, and we all go on our merry ways without giving a thought to the injustice, anguish and violence these offenders endure.
    At least it can plausibly be said that most of them must bear part of the blame for their circumstance.
    But what did all those desolate people in nursing homes do to deserve their nightmarish fate?

A Cruel Spotlight: Dementia on Display
I was told they have "nothing upstairs," that they're "goners. That's a lie
     Each day, when I visit the nursing home over a period of two months, I am not comfortable with the lobby situation at all. Six or eight ladies and one man are wheeled into the area and left there, without their consent, as if to put them on display. These elderly people 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.  
    (Most of those with Alzheimer's are incarcerated alone in their semi-dark rooms -- which also seems barbaric.) 
     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.
"Where am I supposed to be? Are you my mother?"
    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 animal 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. 
    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. 

    Almost every week, there is a major national news story about the "looming epidemic" of Alzheimer's disease. Some sources say the epidemic is already upon us, and anyone who knows a few people over eighty would probably agree.
    This epidemic will bankrupt our country, fiscal analysts state (as if we weren't already way past bankrupt).
    My solution is simple, moral and humane. Each of us, in our living wills, should be allowed to specify the point in our decline at which we don't want to go on living.
     It would save a whole lot of people from years of grief. And it would decrease the demands on our budget by billions of dollars.
    I have written before about the right -- which is not recognized in most states -- to commit suicide (
    It's my life, and I will end it if and when I choose, whether it's legal or not. It's nobody's business. Laws against it are barbaric, medieval and presumptuous.

    I also advocate the right for each of us, in our living wills, to describe in detail the point at which we wish to discontinue living. If doctors are uncomfortable with carrying out our wishes, there should be trained people who are designated and certified to do so.
    Every person with whom I've ever discussed Alzheimer's has expressed horror at the thought of "living on" after their selves have been extinguished by the disease. They don't want to exist as shells of their former selves. They are sickened by the specter of sitting -- vacant-eyed, mouth hanging open -- in some drab nursing facility, or even at home. They don't want to be the "living dead." They don't want to be bathed and toileted by others.
    They do not want to remain alive, if they don't even recognize their loved ones or get any pleasure from nature, music, food and friends.
    They don't want to be a burden. They don't want to be a drag on the lives of others, who suffer endlessly over their loved one's decline. 

    Everyone has told me, the would want to be "let go" at this point. 
    I feel the same way. (I would also want to be freed from conditions such as ALS.)
    If we were permitted to specify the point in our decline at which we would like to be put to sleep -- gently and painlessly -- it would prevent so much anguish. 
    As anyone who has had a loved one with dementia will tell you, it can dominate your life for years. (the life expectancy is eight to 10 years after diagnosis). You feel profound pain. You feel guilty and helpless. You feel trapped and exhausted and probably, on some level, angry.

    If you are the caregiver, you sometimes wonder, secretly, if you are wasting your time. At some point, your loved one is, for all intents and purposes, gone. You are devoting your life (and shortening it as well) to a being who doesn't even know he exists. If this being expresses anything at all, it is usually distress, confusion or anger. But there comes a time when there just isn't any "there" there.
    Most people are dumped into nursing home quite a while before this stage is reached. It is exhausting to care for them, and most families can't handle it. Nursing home administrators, as well as the Ombudsman for Long-Term Care, have told me that once a family installs a dementia patient in a facility, their visits to their loved one dwindle down to practically nothing very quickly. 

    And their loved one sits in a dark room, lit only by a TV set (which they aren't watching), and they are strapped to their chairs to keep them upright, and they may well be sitting in a soiled diaper for hours, and they are probably hand fed by a rushed aide in an understaffed facility.
    We are already spending billions of dollars a year to warehouse Alzheimer's patients in nursing homes. Almost three-fourths of them will die in a nursing home, and it can take years for them to die. Nursing homes are notorious for taking extreme measures to keep them alive, because they are getting very rich by "caring" for this population.
     As I have written in the past, I believe we give up on those with Alzheimer's too soon. 

    I met many people in the nursing home who had been dismissed as "goners" and were treated like potted plants. I discovered that one can connect with these people, if an effort is made. People whom I had been told by nursing home staff were unable to speak did speak to me, after I knelt down beside their wheelchairs, established eye contact and spoke to them. Many of them respond powerfully to affection. They express gratitude for the smallest kindness.
    So I believe we need to be mandating much better care for dementia patients who do still have a person "in there," and we need a legal, dignified way out for those who do not.

    Nursing homes have become prime properties with "an excellent price to earnings ratio," and are being bought up by money men who slash staffs, reduce amenities and sit back while the Medicaid funds pour in.
     Medicaid must put an end to the warehousing of dementia patients. A protocol must be established that would provide the richest, fullest, most attentive and compassionate care possible to those who are still responsive.
    But when I lose that responsiveness and collapse into an internal void, and when the essential "me" has been eaten away, I want the right to be given an injection. I want to be freed, and I want everyone who is suffering due to my condition to be freed, and I want the taxpayers to be freed.


A DIALOGUE on the right to die: