This disease needs an extreme makeover of its image.
Dementia testing and dementia facilities need major overhauls as well.
Dementia testing and dementia facilities need major overhauls as well.
We are throwing our loved ones to the wolves. Every day in these dismal surroundings makes them die a little bit more. When you watch as they become helplessly institutionalized, it breaks your heart.
When I "embedded" myself in Dementiaville, I found that beneath those masks of stupor, sullenness and indifference, there were bright, lively, charming people. Many if not most of them still have beautiful minds, if you just connect with them. In their faces, the sun rises again.
These concentration camps must be regulated. We are losing thousands of precious human beings, who are plunging deeper and deeper into oblivion.They are prisoners. We need to hatch an escape plot.
|I took notes as people's lives were being blown away all around me.|
No way do I, as a journalist, have the courage to be embedded with "our nation's finest" as they vaporize one village after another half a world away. My embed assignment in the bowels of Dementiaville wasn't dangerous, but it certainly was devastating. These superficially cheerful facilities -- with all their framed prints, knick-knacks and fake flowers -- manage to be chilling hotbeds -- how's that for a paradox? Hotbeds of bottom-line ruthlessness and paranoid secrecy. As I have noted before, these places (which cost $70,000 to more than $90,000 a year), are a Disneyfied form of Bizarro World, in which gentle, uncomplaining ladies, and a few men, are deprived of adequate nutrition, medical care and cognitive stimulation, despite the glowing promises about "happy days," "gourmet food," and "cutting-edge dementia therapies" on their websites. Their residents actually spend most of the day dozing. Their brains are dissolving like tissue in an ocean of despair.
But my main point in this post is to dispel the image that most of us have about dementia. I have been snooping around these two facilities, having breakfast every day in one or the other, and hanging out with the Grand Dames of Crazy Town. Like most people, I assumed they wouldn't be in these places unless they were real "goners." Why would you install your parent in a gulag like this unless he or she was extremely impaired?
At first glance, the residents seemed gray and dead. Some looked truly retarded or genetically defective. Others looked like mere shells of human beings with nothing inside their pale, wrinkled, waxy skin. My vision of a person with dementia was that she had very little "upstairs." I pictured even those who had some semblance of self-awareness as being lost in their own dark inner worlds, incapable of having relationships, oblivious to their surroundings -- little more than potted plants, certainly devoid of humor, compassion or curiosity.
They are not. Dementia, except in the advanced stages, leaves much of the mind -- and virtually all of the character and personality -- intact. These are delightful, observant, funny and even subversive people who are starved for freedom and affection. Our warehousing of them is almost as heartless as our prison system. To their overlords at the facilities, they are little more than cash cows, which need a modicum of care and feeding -- and milking, of course. Then they are herded out to the semi-dark barn (euphemistically known as "the TV room"), where they spend one comatose day after another.
|Some are pensive, and they ply me with interesting personal questions.|
|Some love crazy stories, and they tell a few of their own.|
|Some seem haunted, but respond to hot chocolate and a kiss..|
|Some are self-aware enough to grieve about their fate.|
|Some are alert and animated, saying "There you are!"|
|Some are evolving into a graceful serenity, and they soothe the anguish of others. .|
|Some are sparkly and wry-humored, and even a bit naughty.|
One of the pleasures that we can give to them, in return, is to show warmth, interest and respect. It wakes them right up. They blossom so fast that pretty soon you feel as if you're in the middle of a burstingly colorful bouquet.
I have discovered in my seemingly interminable life that people over time come to behave according to the expectations of those around them. That's the power of prejudice. You tell someone often enough that he's lazy and shiftless, that he'll "never amount to anything," and he may well be imprinted to be just that.
People with dementia are treated as children: as helpless, as stupid, as objects that must be moved from here to there, as beings with whom no truly meaningful relationship is possible. Being deprived of genuine respect and interest, they wither.
Likewise, we tend to see what we expect to see. If we envision those with dementia as defective nonentities, we will be inclined not to notice or seek out evidence to the contrary. This same bias applies to the elderly in general, and to racial minorities, to immigrants, and to poor people. In our minds, they are basically subhuman. We fail to see their beauty. We fail to see their dignity and courage. We fail to find their wisdom and resiliency. They are inferior beings whom we avoid, ignore, fear or scorn.
|Embrace him, and pour him some coffee. See what happens.|
We need to embrace those with dementia as fellow human beings, who are real people in need of our compassion and our organized intervention.
I discovered that even those who seemed "deadest," or even downright crazy, burst out of their shells immediately when given an embrace or asked a sincerely curious question. The few who really are pretty whacked-out -- who walk around muttering and scowling -- actually laugh when you say something like, "Don't you feel like punching holes in these stupid walls?" or "Let's sneak downstairs and steal a bunch of muffins and pastries and a bottle of champagne!" They laugh in such a way that their earlier behavior almost seems like a crotchety persona that they deliberately created (although I don't think that's the case) but the point is that they can essentially be tickled back to a more normal mode of behavior. There's one especially scowly, muttery, agitated lady -- who keeps whispering to me "We've got to save the children. Don't tell anyone: It's happening tonight. You have to help me." I tell her of course I'll be there. When she gives me dirty looks, instead of ignoring her (as I formerly did), I embrace her and say, "You are the most darling lady here. Thank god the children have you." Her whole body softens. If she scowls, I punch her in the shoulder and scowl back. She laughs.
Most of the people in the dementia wards don't seem tense, but you can feel this softening -- this bliss -- if you hold them, stroke their hair, take their hands in yours, or kiss them on the cheek.
They are starved for affection. This kills me. Sometimes they actually moan or are moved to tears by the simplest gesture that says, "I'm noticing you." They don't get this affirmation from each other, and they get very little from the brisk, overworked staff.
There is one particularly poignant, tiny woman, who is a sort of Sleeping Beauty. She touches all of us with her glowing white hair and angelic expression. She never opens her eyes, and her head is always down, resting on her chest. She is an adorable creature who seems oblivious to everything.
One day, I couldn't resist bending over and putting my arms around her. This lady, whom none of us had ever seen move a muscle, reached up and placed her hand on mine. There were audible gasps at the table. It was a magical moment from which all of us learned, yet again, that we should stop underestimating each other. Essentially, I had said, "I care," and she had replied, "thank you."
We sit in the dining room for at least two hours. I usually forget that I'm in a locked dementia ward, because our conversations are as amusing as I'd have at any cocktail party. I don't get the literary allusions or current-affairs debates, but what I do get is actual discussions about their lives, their opinions and questions about my life, and their feelings about their situation. Mostly it's banter, but if you can transform a table full of blank, joyless people into a cackling, wise-cracking party, it does tend to make you feel that you have something useful to contribute to the world, which is not my usual state of mind.
Some of the ladies are shy and quiet, but you can see by their responsiveness to our jabbering that they have nice brains. Even if they aren't understanding what we're talking about, they're engaged, and they know when to laugh. Many of them are very quick-witted. We hatch escape plots and fantasize about where we'd go and how we'd live if they could get the hell out of this spirit-killing place. They come up with some enchanting, hilarious scenarios, and we all chime in, adding our own scurrilous details ("Let's have poker and male strippers!").
One day, one of the most dead-looking people there -- whom I have learned to regard as one of the smartest -- inquired if I would mind her asking me a personal question.
She never got a chance to ask it, because her own question sparked a lively debate about what is "personal," and what is too personal, and why can't we all be free to express our curiosity. They are not stupid, but they recognize stupidity. They whisper wry, subversive, wickedly funny comments about the negligence and fundamental dishonesty of the dementia facility. They know they're just props here: They have supporting roles in a melodrama about capitalism. They are cogs. The whole thing is a going-through-the-motions exercise in which they are necessary yet unimportant.
MY SHOCKING INSIGHT
One day I didn't get to the facility before breakfast was served, so as I approached the dining room, everyone was already eating. I was shocked by what I saw. The ladies were not interacting at all. They looked down, they looked out the window, they looked vacantly into nowhere. I realized for the first time that each table needs someone like me: a facilitator who can initiate conversation and keep the interactions rolling along. If the facility weren't so hungry for money, it could have the charming aides do this, instead of making them be waitresses, after having each roused, bathed and dressed her six clients. Hire some waitresses! The aides are certainly more qualified than I am to bring out the best in these "locked in" people, but even I -- a total novice -- am able to transform a dismal morning into a delightful one, just by honestly caring for and rejoicing in these people.
THIS IS NOT A TEST: IT IS A CROSS EXAMINATION
I assume these "demented" people scored poorly on all those horrible tests they give you to assess your mental competency. It's very presumptuous of me to say so, but I think somebody needs to re-examine these tests and come up with something that measures aspects of our cognition that are actually important.
Impaired ability to perform challenging mental arithmetic — for example, counting backward from 100 by 7s -- or remembering a list of unrelated objects or words, or arranging a bunch of shapes into an octagon? I'm sure these tests measure aspects of our minds that have utility, but they tell us nothing about what is truly of value: our empathy, insight, powers of observation, sense of humor, our various pleasures -- cooking, nature, music, sports, books, grandchildren, long walks, whatever -- they don't measure our love of life or our ability to enjoy it. These tests demean and discomfit you from the beginning by asking you to turn a circle into a clock that indicates a particular time, and condescendingly ask you a bunch of juvenile questions. You feel like a child and a lab rat. It's hurtful and it's damned irritating to have your personhood reduced by this absurd methodology.. People with dementia tend to become confused and fearful more easily than the rest of us, but this sort of thing makes even me panic, and my brain is reasonably intact:
The women at the facilities I visit, who I assume flunked similar ridiculous tests, actually do have some degree of dementia, I assume (at least I guess I have to assume that), but that should not become their identity, just as having a stutter or a prosthetic leg shouldn't determine your identity. We give those with mental retardation, autism and Down's syndrome more credit for intellectual potential than we do those with dementia. This is a terrible mistake, and millions of potentially blissful lives are suffering as a result.
We must develop progressive, humane standards of dementia care that legally oblige these profit-obsessed corporations to live up to their promises. There is ample evidence, as I will discuss in a subsequent post, that new technologies and environments (and even vitamins, caffeine and nicotine) are effective in slowing or even reversing cognitive decline.
The dementia industry is oblivious to all of this. They don't give a damn about doing their jobs properly. These corporations must be compelled to live up to their glorious promises or be prosecuted and forced out of business. We are all complicit in this denial of basic human rights to the most helpless among us.
An in-depth portrait of Sunrise Senior Living, which operates nearly 300 dementia wards: http://kronstantinople.blogspot.com/2014/11/darkness-at-sunrise-warehousing.html
There was a frantic coverup and destruction of evidence when my mother claimed she had been raped in a dementia facility. http://kronstantinople.blogspot.com/2014/11/if-tree-falls-in-forest-rape-vs-dementia.html
She suffered, untreated (but easily treated), from an acute attack of delirium for a week before winding up in the emergency room. She has never been the same. http://kronstantinople.blogspot.com/2014/11/malpractice-and-malfeasance-ignore-her.html
Excerpt from "Elderly Girl transforms getting old into a sexy new fad" (http://kronstantinople.blogspot.com/2012/06/elderly-girl-transforms-getting-old.html):
DEMENTIA WILL BECOME A RAPTUROUS NEVERLAND
Let's learn to regard dementia as a welcome escape, and a chance to be totally irresponsible. Speak your mind, spew vulgarities, demand butterscotch pudding and a vanilla-mint e-cigarette! Those poor immigrant girls will be constantly running around to fulfill your every wish. Let's all pledge to slip them a hundred-dollar tip every day. Their overlords are heartless profiteers, and the aides get practically nothing for their exhausting labors. We can rally our remaining cerebral function and organize a union for those sweethearts!
|Finally, we can express our "wacko" sides, with impunity. Go for it!|
But now, before we slip into something more comfortable -- the cozy neon gown known as dementia -- we can get things in place to ensure that we will have a blast, instead of being warehoused and narcoticized. Let's get psychedelic drugs and other mind-bending substances legalized for those with dementia, so we can party in our heads (like it's 1999), instead of sitting there drooling. Let's publicize technologies that have shown the capacity to jolt our memories back to life and to stimulate the production of new brain cells.