Listening To People Without Voices

communicate with dementia patients, reading another person,

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I got my first summer job when I was 13 years old.  My official title was “feeder.” This was my first exposure to time clocks and posted schedules. Also my first exposure to quite a bit more.

My grandparents had died a few years earlier after protracted illnesses, and like many others, I associated the sounds and smells of the unhealthy elderly with my own grief.

Before I started all I knew was that was supposed to wear a white uniform to work. On my first day I was informed my only task was to spoon-feed patients unable to feed themselves. The head nurse handed me a list of names with room numbers and told me I had to be done in two hours. “It doesn’t matter if you clock out late,” she said, “We aren’t paying you more than your allotted two hours.” Her swiftly delivered instructions were entirely lacking in useful information.

As I walked down the hall I discovered every resident there thought I was a nurse. Me, a girl who fell over her own feet. Me, a girl who could barely endure the sorrow of driving past a puppy chained to a tree, an unknown puppy whose imagined plight kept me upset for hours. Now I was surrounded by real plight.

Perilously frail people lined the hallway. Nearly every one of them sought my attention. They asked me to get them something urgent like a bedpan or a pill. They asked why they couldn’t go home or lie down or find something missing. They asked to simply to engage in a little conversation. I was overwhelmed.

One woman cried as she begged me to hold her hand. I smiled and nodded. As I listened to her cry I couldn’t help but steal glances at her hand’s bumpy joints and raised purple veins. I realized it had once been as strong and soft as mine. Time’s appetite made me feel as if the walls, floors, and ceiling were already collapsing.  But I had a job to perform. Surely hungry people were waiting for me. She wouldn’t let go. Not knowing what else to do, I crouched by her wheelchair there in the hallway and smiled weakly as I carefully uncurled her fingers from mine.

heart-based communication, transcending speech, speaking with people who can't speak,

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The patients I was expected to feed lay hostage on narrow beds in identical rooms. Each person’s eyes stared, some directly at me and some at a place well beyond me. Trays of pureed food waited at each bedside. I had to figure out how to lower the metal bed rails in order to reach patients. I held out wavering spoonfuls of meat, potatoes, and vegetables pureed into of a nauseating mush of pale browns and olive greens. After the first patient gagged, I realized it was possible to raise a person’s head and shoulders using a crank at the foot of the bed. Like every other surface, those crank handles seemed to bristle with germs.

I was repulsed by almost everything there except for the people. I found their faces especially compelling. One of the few men on my list was hunched and fierce like a hawk, giving the impression he was ready to fly at any moment. One woman’s deep-set brown eyes were beseeching although she could say only a few garbled words. She looked at me as if she could see much more than those who walk and talk so casually could do. Another woman, whose powdery thin skin and soft clouds of white hair made her look angelic, rarely opened her eyes. When she did I felt strangely blessed. Her awake moments, although silent, felt like moments of expansive awareness.

Maybe it was a 13-year-old’s sense of drama, but I loved these people in a way I couldn’t explain. I wanted them to feel comfort and peace in the minutes we had together. I didn’t know how to accomplish that. But I started, from my first day, to ask them a question. I told them my name each time, that I was there with dinner, and then I asked them what they’d like me to know or asked what it was like to be them. And then I was quiet while I listened to whatever their silence could tell me. I knew most couldn’t hear me or answer me. But I was sure there was a reason I felt something different in the presence of each person. I felt it strongly.

Sometimes an aide would hustle into the room and sharply tell me to hurry. “No use talking to someone stone deaf” or “Ain’t nobody home in there.” But somehow these people, not fully in the stream of life and yet not departed, seemed imbued with more instead of less. They were my elders, far ahead of me in every way, and I hoped for a hint of what they knew. I wished to make my attention into an antennae to pick up whatever they might be sending.

mystical communication with the elderly, speaking to those near death, communicating with the dying,

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This is a way of communication I have continued to explore. We humans are connected by much more than language and social norms. We understand each other in far less overt ways. We entrain to one another’s heartbeats, synchronize our moods, react to the light each living cell emits, and pick up energy that some call intuition and others call morphic resonance.

It wasn’t anything I talked about then and even now it’s hard to explain. This is hardly a process unique to me, just something I am still trying learn. If I had to put it in steps, here they are.

1. Pay close attention to the other person. You may choose to look at them for as long as is comfortable, or simply to sit quietly nearby.

2. Be aware of your bodily sensations. Recognize them without making a mental effort to interpret them, at least right away. They are significant.

3. Be aware of seemingly irrelevant things that occur to you—song lyrics, flickering memories, a rush of emotion. Recognize these without making an effort to interpret them. These too are significant.

4. Slow down, staying with your awareness of the present moment. You are allowing your heart’s wisdom to enter your consciousness. Opening to understanding with your most vulnerable self, unguarded by the analytical mind, can be a way to receive such wisdom.

5. Send kindness to the other person in whatever way you can. perhaps as a quiet blanket of compassion or as waves of love. Your heart’s electrical impulse emanates several feet from your body, affecting the electrical impulse of another person’s heart within that distance. A loving heart actually transmits that sensation to people nearby. The kindness you send is received. Trust that.

6. After following this procedure through several visits you may choose to send a request from the deepest part of yourself to the other person. Then pay attention to the sensations in your own body, to whatever images and emotions arise, and to the quiet sense of knowing that seems to come from nowhere. These are a response. You may have to work hard to refrain from inserting what you think into the situation. Stay centered.

7. Honor the other person. Choose to close with a prayer, a kiss, a few minutes to rub lotion on his or her hands, or some other direct contact.

 

mystical communication, silent understanding, heart-to-heart communion, speak to the dying,

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My summer as a Feeder seemed endless. I wasn’t good at my job. I realize now how badly informed I was in my position. Not only was I not instructed to raise the head of the bed, I also wasn’t told how much to feed each person or how important it was to get them to drink. I remember feeding very little to the people who looked away, closing their mouths against nourishment. I didn’t know what else to do for people who were trapped in small sweltering rooms inside barely functioning bodies. I could hardly eat that summer either. The smell of the nursing home—old urine and cooked cabbage—seemed to reappear in my nostrils at odd moments, leaving me with no appetite.

After my work was finished each afternoon I spent time listening to the patients parked in wheelchairs and those walking along the hallway handrails. They told me of tragedies. Not the wars and poverty they’d experienced but more recent sorrows— children who didn’t visit, pets gone, choices taken away. They begged me to help them in dozens of ways, every one beyond my ability. They cried. Several women there were healthy in body and mind, but had lost their homes and possessions when they recovered from supposedly terminal conditions, leaving them in institutionalized for years. One man, Joe, told me every day that he was afraid of burning in hell. He insisted he was doomed for eternity unless he could confess to a priest. With the hubris of a non-Catholic, I thought I could easily fix the problem. I told him I’d get someone to come from the Catholic church a half mile away. When I called I was told no priest would come, as a layperson conducted all required nursing home ministry tasks. The next day I asked Joe if he would confess to a layperson. He shook his head with sorrow so profound I could barely breathe.

My job was over when school started. I promised myself I would go back to visit. The faces of the people I fed rose up in my idle moments and in my dreams, but I didn’t go back. The silences I held for them became my own silence.

alzheimer's sufferers still communicate, communicate with the dying, listening to silent people,

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What if a man cannot be made to say anything?

How do you learn his hidden nature?

…I sit in front of him in silence,

and set up a ladder made of patience,

and if in his presence a language from beyond joy

and beyond grief begins to pour from my chest,

I know that his soul is as deep and bright

as the start Canopus rising over Yemen.

…there’s a window open between us,

mixing the night air of our beings.

Rumi 

Do Brain Training Games Work?

Nurturing neurons

Nurturing neurons

We listen to a lot of public radio in my house. Shows like RadiolabThis American Life, and Science 360  make chores go faster and often lead to great conversations. But I bristle every time I hear another sponsorship slogan by a certain program underwriter. It goes something like this: “Lumosity, the brain training program to improve memory and performance, for life.”

Every time I hear it, I think of my dad’s experience. My father moved back to his childhood hometown when he was in his seventies. He was delighted to run across people he’d known decades earlier. They recognized him, asked about his family, reminisced about his mother (who’d been a popular high school teacher), and shared stories of their own lives. It was an absolute thrill for him. He felt rooted, more truly at home than he’d felt for years. “Who you are,” he told me, “is all in what you remember.”

The most gut-wrenching part of moving back, for my dad, was meeting up with his old friend Mitchell.* Our language doesn’t yet have a word for the moment when any of us meets up with someone we’ve known for years, only to realize the other person is suffering from dementia.

Developing dementia of any sort was my father’s worst nightmare. He read every article on prevention and subscribed to various journals so he could keep up with the latest Alzheimer’s disease research. He modified his already stringent diet and intensified his rigorous memory preservation efforts; influenced, in part, by advertisements from “brain training” companies that relentlessly targeted his age group.

He’d recently and very happily remarried, sang in the church choir, went on bike rides, was an enthusiastic bird watcher and gardener. But he’d turn down going to lunch with friends and skip interesting programs at the senior center because he prioritized brain training. He memorized sequential pictures and lists of words, did math problems and crossword puzzles, and clicked through brain training programs for hours every day. He couldn’t have known that his active life would suddenly be cut short by an aneurysm. I’m still saddened by the time he spent indoors hunched over a computer screen instead of letting himself more fully engage in life’s pleasures.

Here’s what’s particularly galling. Experts tell us that more frequent social activities (like the ones my dad kept skipping) offer a protective effect. Studies show that a larger network of regular social contacts is associated with better semantic and working memory well into old age.

Do brain training programs offer similarly protective effects? Not even close.

As the population ages, more and more people are trying to ward off cognitive decline by using brain games like Brain HQ, Dakim Brain Fitness, My Brain Trainer, and of course, Lumosity. (Over 70 million people use Lumosity, many paying $15 a month.) Customers are assured that such programs will improve memory and thinking skills. They’re told these games are backed by scientific evidence. In fact, Lumosity‘s site lists a number of studies.

Those studies, however, may only tangentially relate to the product or cannot be replicated by more exacting researchers. Some of this research is conducted by individuals or institutions with financial links to brain training companies.

And here’s the thing: Improvements in game scores don’t really translate into better cognitive functioning in daily life, especially long-term, even though that’s what motivates people to play in the first place.

A few years ago, the Alzheimer’s Society teamed up with the BBC to launch the Brain Test Britain study. Over 13,000 people participated. The results weren’t promising. People under 60 got better at individual games, but their overall mental fitness didn’t improve. An expanded study to test those over 60 is still being analyzed, but it doesn’t sound like breaking news either.

Sure, players will improve their scores on games they enjoy, but if time spent playing subtracts from other more beneficial activities, it’s time squandered. There’s also worry that when brain training customers believe these games protect them from dementia, they may be less likely to eat right, get enough exercise, and pay attention to other means of prevention.

Scientists are speaking up about this. A joint statement titled “A Consensus on the Brain Training Industry from the Scientific Community” was released last year by the Stanford Center on Longevity and the Max Planck Institute for Human Development in Berlin. The 70 scientists who participated summed it up this way,

We object to the claim that brain games offer consumers a scientifically grounded avenue to reduce or reverse cognitive decline when there is no compelling scientific evidence to date that they do. The promise of a magic bullet detracts from the best evidence to date, which is that cognitive health in old age reflects the long-term effects of healthy, engaged lifestyles. In the judgment of the signatories, exaggerated and misleading claims exploit the anxiety of older adults about impending cognitive decline.

All of us are used to companies stretching the truth in order to get more customers. But we live at a time when one in three seniors dies with Alzheimer’s disease or another form of dementia.  It’s estimated that the number of people with Alzheimer’s disease will triple in the next 40 years.  (I’m going to be pretty old in 40 years. I bet you will be too.) It’s particularly heinous when companies exploit very realistic fears. When trusted news outlets accept money from these companies, that’s when I turn off the radio.

*Name changed to protect identity.

Update. The creators of Lumosity have agreed to pay the Federal Trade Commission a 2 million dollar fine for lying to customers. “Lumosity preyed on consumers’ fears about age-related cognitive decline, suggesting their games could stave off memory loss, dementia, and even Alzheimer’s disease,” said Jessica Rich, Director of the FTC’s Bureau of Consumer Protection. “But Lumosity simply did not have the science to back up its ads.”