Beyond Words

Outside, the city with its pace; inside, a space where every step takes time.

One hundred days as a personal caregiver in nursing homes with people living with dementia changes my view of relationships. They show that closeness arises where control ends.

Death is closer to us than we think. When it reaches Mr. Weninger at the end of summer, the news surprises me just as I am about to ask a caregiver at the home to prepare him for an outing. Mr. Weninger had seemed so unshakably grounded in life — though in his case, one would have to say: in lying down. After a stroke in his mid-sixties that tore him from his familiar surroundings, the former branch manager of a supermarket north of Vienna ended up on a care ward.

A few weeks earlier, at the beginning of August, I opened the door to his room on the third floor for the first time. I had been in the new job for only a few days — visiting service as a personal caregiver. He lay in bed, flailing his arms uncontrollably, and when he addressed me, my stomach tightened. I could not understand a single word. His dental prosthesis was missing. With a strong, loud voice, he formed sentences that sounded to me like a foreign language. The juice on his bedside table was thickened with a special powder and had the consistency of a gel so he would not choke. In the corner, a wheelchair; on the table, a board intended for writing things down if one cannot understand him. But with his trembling hands, writing is out of the question. Yet Mr. Weninger is mentally fully present. He is reading a crime novel, and I wonder how he turns the pages when he cannot even hold the book steady.

He is happy that I have come. The fact that I understand little does not seem to bother him. When I leave, he waves to me. After 30 minutes, which feel endless, I step outside, take a deep breath, start my Vespa, and drive off.

It is mid-August, summer in the city. I buzz through Vienna on two wheels, from one home to the next, weaving past construction sites, overtaking cars at traffic lights, saving time—only to be slowed down again by my clients shortly afterward: where every step takes effort, where getting up and getting dressed becomes a procedure, different concepts of time apply. As with Mr. Conrad. A brilliant mind from modest beginnings, raised in post-war Germany, he studied physics and mathematics and later developed technical systems for an aircraft manufacturer. He lived in the United States and Great Britain, traveled first class, had a house and a family. Even now he analyzes with razor sharpness and yet cannot grasp what Parkinson’s is doing to him now, in his late seventies. He depends on a walker and on caregivers who help him dress and undress. The sensitive touch screen of his smartphone becomes, for him—the engineer—an insurmountable obstacle: a few incorrect code entries because he touches the screen too often, and then he is unreachable by phone for his wife and adult children for days. “I could never have imagined this,” he says.

Like Mr. Conrad, many believe that intellectual agility, the ability to analyze and plan strategically, would be unbeatable in life. The world as I knew it too: the faster, the more successful. I gave nursing homes a wide berth—too boring. Even in my later years as a pilot, the job description was mainly about the mind.

Here it is different: when you encounter people with word-finding difficulties, the most precise analysis is useless. That information is already in my client file anyway. To the embarrassment of silence, to the merciless impositions of illness, something else must be offered: calmness. Goodwill. Trust. The willingness to engage with the other person and to let go of one’s own plans. One might also say: devotion. Or: heart.

85 percent of caregivers in Austria are women; the European average is around 70 percent, according to statistics. Women evidently live out the capacity for empathetic action in this field far more than men; yet, in managing director positions, the ratio reverses: 30% women, 70% men in the German-speaking world. And even 50 years after former chancellor Bruno Kreisky’s reform of parental leave and divorce law, women who have sacrificed themselves for others often end up needing care themselves at the end of their lives. What they actually wanted, they never asked themselves. Perhaps no one was interested.

Mrs. Gerharter, in her late eighties, is one of them. She tells me, right away, during our first walk together, that she has ruined her life. She grew up in a working-class family near Vienna. Her father dug drainage ditches; she married a neighbor’s son and became pregnant. Raising a child, cooking, working, fixing up the small municipal apartment. Her husband liked to celebrate with his friends. She walked her son to kindergarten, went on to her job as a saleswoman, picked him up again before washing laundry and cooking. Dreams? She was too tired at the end of the day. Travel? Others did that. Role models? She thought Johanna Dohnal, Austrian´s first Minister for Women, was cool; she had met her once. Longings? Mrs. Gerharter pauses. There was her grandmother, who took her as a small child on a summer holiday to visit a friend in Styria, Austria. There she felt safe, with a person who allowed her to simply be as she was. When she remembers it, she has tears in her eyes. Yes, a trip there -- that would please her! But how, without a car, with increasing unease outside and the feeling that she is losing her orientation more and more often?

The mere fact that someone truly listens to her is extraordinary for Mrs. Gerharter. From visit to visit, she begins to discover what brings her joy. She marvels during our outings: “I would never have come here otherwise,” she says. Women like her often seem to believe they have accomplished nothing special. Their life wisdom, what has made them who they are today, remains a blind spot. I tell her.

A few kilometers away, I park the Vespa in front of Mr. Kuba’s apartment. He lives in an attic just below the Kahlenberg, with a view over Vienna. His wife is at the hairdresser’s; he is friendly and worldly, once in a managerial position in a well-known company. In his photo album are neatly labeled pictures from a graduation trip to Naples. He is a graduate engineer and once worked as a ski instructor, athletic, a charming man—and judging by the photos, apparently quite a ladies’ man. Now he does not recognize his own grandchildren, who smile at him from the framed photo on the desk. He flips through the newspaper without reading. Then he looks at me helplessly. Oppressive silence. He begins a sentence, cannot finish it, laughs. Then he jumps up from the couch, goes to the television, opens the lid of a crystal bowl, and offers me a chocolate ball with a radiant smile.

Three weeks later, he throws me out. He believes I am his wife’s new boyfriend and want to move in with them. You never know how the day will unfold or what awaits you on the next visit.

Some scold, others flee from me; once, a woman becomes physically aggressive. Traumatic experiences with men in the past are not uncommon. A person’s character also shines through the illness. People like Mr. Kuba have a fine sensitivity to moods and a great fear of losing control. It is said that emotions do not become demented.

An old pilot colleague, to whom I tell about my new work over a beer in the evening, asks whether I might not want to fly again after all. “Doesn’t it drag you down?” A good friend worries I might give myself up. “I could never do something like that!”

It takes time before I grow into this new role. It requires adapting again and again to very different characters and situations. Much suffering is palpable — and visible.

When sitting next to someone lying in bed with closed eyes, the temptation to pull out the phone and quickly check emails is great. It would not be noticed. But it also has something corrupt about it. It feigns presence where there is none.

Sometimes I think I am the wrong person for this job. I never intended to work with people with dementia. What is fascinating about it? Perhaps their directness. The honesty in their interactions. Here, no one needs to convince the other. No pitch like in the startup world, which has made me tired, with its celebratory posts on LinkedIn or Instagram: what great podcast idea someone has, which seminar over the weekend has changed one’s view of life, how “thrilled” one is to have been chosen by Impact Magazine so-and-so as entrepreneur of the millennium. Everyone wants to shine.

In nursing homes, it is moments that shine.

Martin Buber wrote a hundred years ago about what it means to truly encounter one another, and even today practice shows how right he was. He distinguishes between two kinds of relationship: that between I and It. I treat the other as an object—I have a goal, want to achieve something, control the situation. The other becomes a means to my ends. Then there is the encounter with a You. On equal footing — as an equal partner, without a plan, without knowing what will come. In such an encounter, everything is possible. And nothing is predictable.

This offers the chance to enter a completely different reality. And, as a colleague says, it has something almost political about it. Validation, a concept developed by the American Naomi Feil in the 1970s and first published in 1982, builds on this. Feil noted that one does not argue with people with dementia, nor explain to them why they are mistaken; instead, one refrains from judging and accepts the laws of the other person’s world. In this way, people retain their dignity, experience appreciation, and feel warmth despite their illness. Validation is now a common practice in dealing with dementia. The conscious shift of one’s own perspective often proves to be a stroke of luck. It opens access to an unexpectedly deep connection with other people.

Dementia as a force that shatters our conception of the world and reveals humanity behind it. A daring thought. A beautiful one as well.

I experience several such moments in which my reality turns 180 degrees. Always with people to whom I initially felt superior.

The first is given to me by Matthias, who is a year younger than I am and has Trisomy 21 (Down syndrome). He likes to color in coloring books, and when we go to a nearby shop together to pick out a new one, he greets complete strangers along the way. “Hello there!” he says cheerfully and waves at them. Some look away, others greet him back. He gives the saleswoman in the bakery a hand-kiss. At first, I am embarrassed. She, however, is not bothered; she gives him a raspberry slice. Matthias can take such joy in things that I feel like an old know-it-all beside him. He wakes me up. Strikes a chord that had long been silent. His innocent joy, free of any ulterior motive, is contagious. Back in his room, he sits at the desk, colors in his new Ariel book, listens to Schlager music, and is content with the world. When was the last time I was?

It becomes even clearer with Erik, just over 60, in a nursing home for years. He has been diagnosed with an “intellectual disability.” He sits in a wheelchair, and we do his favorite puzzle together: Ravensburger, age 6+, 100 pieces, two fire engines in front of a burning house. There is a lot going on in my life at the moment, and I notice how restless I become when I see Erik pick up a piece that does not fit and try to attach it where it does not belong. Not him. He smiles and tries. Rejoices and makes a joke. I look at the puzzle with the fire engine, then into Erik’s face. And then my certainty is gone. The truth reshapes itself. I am allowed to learn here. Slowing down. Relaxation. Humor. Joy and lightness — just as they are reflected in Erik’s face. It is a beautiful face. A You that—in the sense of Martin Buber — has found the way to my I. And has remained there ever since.

After dozens of clients and attentive listening, one thing is clear: as long as someone lives, there are also longings. With Norbert, an autistic man who also suffers from epilepsy, I visit a thermal spa and push him for hours through the pool with his flotation vest. He relaxes so much that, lying on his back in the water, he briefly dozes off. For Karl, who has not left the nursing home for months, it becomes a spontaneous outing in a wheelchair, during which we order a cheeseburger with fries together at the McDonald’s around the corner. Matthias wishes to start a Harley Davidson once in his life — so I take him to the store on Triester Straße, and he is allowed to do just that. For Mr. Conrad, I arrange a phone call with his best school friend; they have not spoken in years.

These are the moments that enrich this work.

On a late summer afternoon with Mr. Weninger, we decide to go on an outing. In the meantime, I know his family from photos, have grown accustomed to his way of speaking, and found a way to communicate well: I ask questions, he answers. The more I learn about him, the more I admire him. The way he bears his fate without despair. Days, weeks in a room. Locked behind glass panes at a constant temperature, the world with its changing seasons—unreachable for him.

For every movement, he depends on the availability of others and still smiles when he sees me.

We go into the garden with the wheelchair. He shows me the way there, gestures, enjoys taking the lead, enjoys the wind and the sunlight on his face. Later we take a selfie and visit the café on the ground floor. He orders apple juice, into which I stir the thickening powder, then I hand him the cup. He drinks, nods with satisfaction, invites me for a coffee — and the waitress he likes as well. His voice is so loud that everyone looks. They see: a happy Mr. Weninger. It is the last image I have of him. The next outing never took place. At the latest then, I realized who was truly the one who had received a gift on that day when we saw each other for the last time.