Friday, May 20, 2011

Operation Alzheimer's: The next civil-rights struggle

Somebody's mother.

   (5/20/13)  It is not unreasonable to regard American history as an ongoing series of battles for equality, respect and acceptance. African-Americans, immigrants, women, veterans, the disabled and the LGBT community have had to advocate heroically on behalf of themselves, decade after decade. and their progress has been agonizingly slow. We who are in the majority should have had enough integrity and compassion to take the lead in demanding fair treatment for these oppressed groups (don't we have any sense of responsibility, humanity or moral outrage?). We should have embraced and celebrated their differences, instead of forcing them to cry out, "I am a human being!"
    But now, we in the majority really must act: We must give a voice to the millions of Alzheimer's patients who suffer silently in the darkest corners of our collective lives, cruelly stripped of their personhood. We are all they've got, and we're failing miserably. We must wage a War of Interdependence. Shall we overcome?
Break the bonds of complacency and aversion.
    The Alzheimer's patients in nursing facilities across America cannot speak for themselves. Many people, including some of their so-called caregivers, openly characterize these traumatized people as "potted plants" or "zombies." They are said to have "nothing upstairs." Remarks such as "She doesn't know what she wants," or "She'll never know the difference," are expressed all the time.    
    Most of these people, who used to be just like us, are confined in rooms that are lit (if at all) only by a TV set with the sound turned off. A gaunt, slumped, elderly person with haunted eyes is either lashed perversely to a wheelchair, her head lolling forward, or is lying on top of the bed in a fetal position. In one room after another, in thousands of facilities across the country, millions of forgotten people -- the living dead -- have been left to rot. This is America's gulag -- or one of them, anyway.

    It is absolutely chilling to discuss these patients with the "professional" staffs of nursing homes, who will tell you that "Sarah can't talk," even though you have just been talking to her. Their patients are often treated like inanimate objects who are to be wiped off, propped up, and left by themselves for yet another day of nightmarish oblivion. 
     "At this point, all that's left is the disease," a middle-aged nurse told me offhandedly. "Their personalities have been destroyed."
    I found that to be patently false. 
    What I want most to convey is that most of those people are still "there." All I had to do was to kneel down next to a wheelchair, and stroke someone's cheek or take someone's hand or patiently establish eye contact. They were there. Their hunger to be touched was heartbreaking, and so were their confusion and sense of betrayal.
    Most of them did indeed speak to me, and their skewed or muddled perceptions did not negate the fact that they were still themselves. 
"Where am I supposed to be? Are you my mother?"
    I believe the fact that they were essentially in a concentration camp had as much to do with their decline as Alzheimer's did. 

    I strongly suggest that everyone take a little stroll through a nursing home. For two months, I spent several days an hour in one of the top facilities in my state in 2010 and 2012, and I can't forget what I left behind. My interactions with the Alzheimer's patients were heartbreaking ( I am told that conditions continue to deteriorate as the entrepreneurial new owners, who are amassing a "chain" of nursing homes, have continued to slash costs and impose "efficiencies" that measurably decrease patient care. 
    I went into extensive detail in that article, and I plead with you to give it a quick once-over, so you can grasp the vast extent of the suffering and neglect that we as a society are permitting to continue.
    Mary Campbell, Director General, Corrections and Criminal Justice in Canada, has written that "a natural drift toward callousness at best and brutality at worst.....exists in corrections, and a lack of genuine commitment to a culture of human rights can swiftly return prison culture to the dark ages, where expediency rules rather than the law."
    Having read extensively about the history and the current conditions prevalent at nursing homes in the U. S., I find this quote to be strikingly applicable to Alzheimer's institutions. Nursing homes are very much like prisons, although in prison there is hope, and there is vitality, in addition to the fear and cruelty. The "natural callousness" can occur, I believe, because the atmosphere in many nursing homes is one of chaos, stench and hopelessness. Most employees are so poorly paid and burdened with such arduous work that resentment and apathy can easily develop. Because there is rarely any training provided about Alzheimer's disease, aides tend to regard patients as virtual nonentities who have no awareness of whether they're clean or filthy, well-fed or half starved. They probably don't even feel any the pain of those bedsores, right? Especially since it is routine to give them opiates, to "manage their behavior."

I had always thought bedsores were sores, not deep, infected craters.
     Imagine what it would be like to be confined in one of these facilities, and to realize that no one in "the outside world" knew or cared what you were going through. It is so hellish, it is almost unbearable to contemplate.

    And even if you don't care about all those old wrecks, with their gaping mouths and vacant eyes, keep in mind that you may very well wind up in the same situation. Do you think any of these people had any idea that this would be their future? They had children, friends, church brethren, who would never permit such a thing to happen! Surely they would be cared for with tenderness and patience by those to whom they had given so much.
    Dream on.
    Some of the most attractive, wealthiest, most prominent people in our culture have died in these conditions, after languishing there in utter obscurity for years. We never knew about it until we read their obituaries. Most people with Alzheimer's wind up in a nursing home, wasting away until they die. Their families -- exhausted emotionally and financially -- have disappeared, if they were ever there. 
    By deliberately hiding those with Alzheimer's from view -- out of sight and out of mind -- we are committing a sin.  All of us are complicit in this, because we have failed to demand basic civil rights for those with all dementias, and to insist that these rights be enforced through effective monitoring programs.
   International law would deem our treatment of these locked-away people -- these priceless human beings -- as a clear and calculated violation of their fundamental rights. Convicted felons have more freedom and greater legal protections. Dogs at the animal shelter receive more attention and affection (and greater compassion from the public).   

    This is not the way to treat Alzheimer's. It's the way to get rich off of it. Medicare and Medicaid disburse tens of billions of dollars to nursing homes each year, thanks to a brilliant lobbying machine that favors them over more humane, less-expensive alternatives
    While profits surge, and nursing-home chains amass tens of thousands of "beds" apiece, patients are neglected, overmedicated, undernourished, isolated and abused. They remain in soiled diapers for hours. They are left without access to fluids. Their call-button signals are ignored.  
    The average annual cost per patient has reached a new high of nearly $87,000 a year to warehouse our helpless, voiceless elders and rake in the profits. Patients become both the cost of doing business -- which the efficiency experts keep minimizing brilliantly, by slashing staffs and amenities -- and the source of dazzling revenues.
    As of this year, an estimated 5.4 million people suffer from Alzheimer's disease. Just over 75 percent of them will wind up in a nursing home, according to the Alzheimer's Association. Virtually all of them will die there.
    They are put out to pasture, except that it would be much nicer if there really were a pasture.

    Ombudsmen for long-term care in several states have acknowledged to me that very few of these people ever have visitors -- except perhaps on holidays -- after their families leave them there. It is understandable that the excuse, "She won't know the difference if we drop by or not" is so often expressed. We can't judge those who can no longer cope with a parent's decline. But we as a society can and must cope. 
     Ombudsmen claim not to have adequate staff to ensure the health and safety of those confined to nursing homes. In some states, they plead for volunteers to do this difficult and complex job. It is clear that in many if not most states, the "watchdogs" have become either too complacent or too cozy with nursing-home officials to do anything even remotely resembling an aggressive defense of patients' rights.
    Thus, Alzheimer's patients are plunged into a shadowy netherworld in which they lose track of time, and are sapped of energy by drugs, isolation and inactivity. A 2011 report by Medicare reported that opiates, antipsychotics and anti-anxiety medications were being vastly overused (conveniently, they keep patients in a stupor), costing the government hundreds of millions of dollars annually. 
    The drugs make you prone to falls, so your keepers require that you remain in a wheelchair, or in bed, to protect themselves from liability claims. Within weeks, Alzheimer's patients who had entered a care facility with the capacity to walk around -- exploring and interacting -- cannot even stand up. Inactivity breeds weakness, physically and mentally. It is a surefire way to create depression. Deeper and deeper, our precious elders sink into catatonia. Their eyelids are getting so heavy! So are their heads! It is a living death. 
    Is it the disease, or is it the institution? 
    One thing is certain: It is a scandal of epic proportions that implicates us all.
Let's get those poor, traumatized people OUT OF THERE.

       So what does civil rights mean, in this context? I know from family experience that an unprotected elder can be locked away in a dementia facility without even having had a thorough medical and psychological workup. Numerous factors, most of them reversible, can mimic dementia, including poor medication management, loneliness, depression, untreated chronic pain and emotional trauma and other medical conditions.
    We should demand that at least two qualified doctors diagnose the patient with Alzheimer's or some other form of dementia -- using a full physical and psychological workup, including an MRI -- before he or she is institutionalized.
    We should demand that every patient diagnosed with dementia or Alzheimer's  be placed in the least restrictive facility possible.
    We should demand that every Alzheimer's patient have access to legal counsel.
    We should ensure that the patients' rights of free expression, without fear of retaliation, be enforced. Anonymous complaints against personnel or practices should be enabled. Their rights to send and receive mail, to have phone access and to question their confinement must be respected. 
    Each patient should be entitled to periodic reviews of his condition to see if he can live comfortably in a less restrictive, oppressive, isolated and expensive environment.
    Friends and loved ones, if there are any, must have the right to view and question the medications that are being administered. 
    The state must maintain a database of every Alzheimer's patient who does not have an advocate: a friend or family member who has medical power of attorney or at least a consistent and ongoing interest in the patient's welfare. 
    Most of these patients have no one who is monitoring their treatment or even visiting them. The state must provide a system of ensuring the well-being of these patients. Every other patient who is helpless, such as those with ALS, or who have had a debilitating stroke, should also be included. People are suffering desperately, and there is no one to help them.
    A forceful protocol governing state ombudsmen for long-term care must be put in place. They are not even coming close to providing the oversight that is needed to ensure the well-being of patients with Alzheimers, and with other long-term conditions as well. We Baby Boomers should volunteer to supplement their inadequate staffs. 
    Until things get organized try this: Just walk right into a nursing home (there's no security), and start paying visits to those who are alone in their rooms. Perhaps it's technically illegal. I don't know. I couldn't care less. There's all sorts of illegal stuff going on in there, and I'm just trying to mitigate it.
    Give them comfort. Hug them, stroke them, kiss their cheeks, hold their hands! They are aching for this kind of attention. I have never met any one of them who didn't love having her hair brushed or lotion massaged into her shoulders, arms, legs and feet. A cool or warm cloth pressed against the face seems to refresh them.
    Assess the condition of their bodies and their environment. Alert the media. Harass the regulators. Take pictures.
    Shall we overcome? If we don't, we'll be sorry. 

COMING NEXT: Elderly Girl weighs in (as she always must) with some outrageous yet oddly sensible strategies.