We Have Betrayed a Generation

This article is the winner of the European Press Prize 2024 in The Public Discourse Award category. Originally published by Preiskovalno.si, Media 24, Slovenia. Translation provided by kompreno. 

I.

I knew that you were slowly leaving us. That night you were in pain, so I took you to the Clinical Centre in Ljubljana. I didn’t want you to die at home, because, in a way, I wanted to spare the children — your grandchildren — from suffering. I didn’t want you to die in the same house where the children were. I didn’t want a coroner’s van to come down the street and take you out of the house in a coffin. I know you didn’t want everyone to see that.

In hospital, as you waited to be examined, your hands clasped in prayer, you begged me to take you home. I didn’t listen. Soon you lost consciousness. You stopped breathing and were on life support. The doctors looked for a room for you and found one at the end of the corridor. You were alone in the room. The doctor was waiting for me and asked me if I understood the seriousness of your condition. I nodded. At the hospital you were given food and water through tubes. You no longer responded to the world around you, except to turn your head at the sound of my voice and open your eyes for a moment. I lay beside you in the hospital bed and told you that everything was going to be all right. That we would go home soon, that you should squeeze my hand if you could hear me. You moved your finger. I had the horrible thought that your brain was working but your body wasn’t. I told you a hundred times that I loved you, that you were the person I loved most in the world, that we would go home as soon as they brought the pills and turned off the machines. I wanted to give you my smell, my warmth, my hugs — like the baby care books tell us to do. Everything would be fine, I kept telling you. I lied. In our biggest hospital they advised me to transfer you to the hospice in Ljubljana. We waited for the transport . . .

II.

Silvija Novak and Brigita Kneževič gathered their courage and a month ago shared their experiences at the Bokalce Nursing Home in Ljubljana. Silvija told us that her mother had been immersed in scalding water. Her whole back, legs and arms were burnt and blistered up to the elbows. Her wounds were treated in hospital. The case was also reported to the police. The home admitted to the incident. Once the anger and disappointment had subsided, life went on. Silvija spent every spare moment with her mother, and when the dementia set in, she even helped to feed her so that she could still have a hot meal. The food was delivered in heated trolleys and insulated containers, and there were microwave ovens in all the living units so that the residents could heat it up, said the director of Bokalce, which is west of the capital. But how can a person with dementia or reduced mobility heat their food, wondered Silvija: “I have asked that people with partial disabilities be helped with appropriate cutlery and that their plates be heated, because they always eat cold food. They are served salad on a flat plate, so they can’t eat it with a fork, they just pick it up with their hands — like in a zoo!”

Brigita Kneževič found her mother with someone else’s dentures in her mouth; she almost choked. She told me about how they swapped beds, and how she could have been given the wrong medicine because of the different name on the edge of the bed. And she told me about the loneliness. In the morning they put her mother in a wheelchair and wheeled her to the window. Hours later they found her, the sun beating down on her overheated face. She couldn’t open her eyes; her pupils had been hit by the strong light for too long.

(None of these claims have yet been resolved, as social and health inspectors are still investigating. There is no broad consensus on who should deal with the elderly and how. Everyone agrees in principle that “a lot needs to be invested in staff training”. We do not have a single quality control system. An elderly person can claim that they are being mistreated and the home can deny it. There is no standard of proof.)

The Slovenian media also picked up a story this year about a student who posted a video of violence against an elderly woman on Tik-Tok. She filmed herself pinching the nose of an immobile resident in a nursing home in Trebnje, then haughtily asking her “What’s wrong?” The elderly woman cries out in pain and tries to protect herself with her hands from the student, who then pulls her hair. The resident is seen pleading with the student, shouting “Stop it!”  In response to the video, the Minister for a Solidarity-Based Future, who heads a ministry created by the current government, said that “trends and research show that violence against the elderly is a phenomenon that we as a society need to pay more attention to.” More attention? We need to give it our full attention, not just more. There is no room for tolerance when it comes to violence! Human Rights Ombudsman Peter Svetina also expressed his dismay at the emergence of videos showing violence against the most vulnerable: “This reflects an alarming erosion of values in society. We need to make young people aware that violence is a crime and that such images deserve condemnation, not likes.”

Every year, the Slovenian police record around 320 cases of violence against people over the age of 64 — 200 against women and 120 against men. We must try to imagine that these are 320 people who are abused, beaten, denied water and food. How many are simply abandoned? Something is terribly wrong in our society. Never before have so many stories of violence and inappropriate behaviour towards the elderly been reported in the Slovenian media in one year. For the first time in our country’s history, we have a ministry that deals with the problems of the elderly. But the shortage of staff is worse than ever. It is not only the workers who are prisoners of the uniform wage system, but also the directors of the homes, who have no leverage to attract staff. “More than half of the workers in care homes earn less than the legal minimum wage,” according to the Association of Social Institutions. In other words, less than €878 a month. That’s why the door is wide open to any student who wants to enter the field. There is a shortage of people interested in caring for the elderly, at least in the public sector. But many have taken advantage of the market and offer care for a hefty fee.

The well-known journalist Eugenija Carl described her experience with a violent care worker who abused her mother. It was only the hidden cameras in her flat that revealed what was happening behind the closed doors of her home. Crucially, she believed her mother when she tried to tell her that there was something seriously wrong with the carer. The worker appeared friendly, gentle and caring, but within the walls of the home there was shouting, physical and psychological abuse. After being exposed in Slovenia and reported to the police, the worker extended her activities to neighbouring Italy.

(Carl has filed a complaint with the police and the public prosecutor’s office. The care worker will be tried.)

From the nursing home in Maribor, there are also stories of abandoned elderly people who spend 15 hours in the same nappy. Some residents haven’t been outside for three years! Staff have accused the director, and a group of them spoke of humiliation, intimidation and confirmed rumours of degrading care. The director denied any improper or inappropriate treatment of the residents. However, it appears that not all the allegations were unfounded. Analysis of professional inspections revealed a number of anomalies and inadequately regulated procedures.

(Despite the proven irregularities and the home’s serious financial problems, the director’s mandate was extended, even against the opposition of the minister responsible. The director is close to the ruling party.)

III.

Deventer is a place in the Netherlands that has made the headlines of the world’s leading newspapers for its bold concept: the Humanitas nursing home is also a home for students. When I visited the facility in 2017, I was greeted by the director, Gea Sijpkes, who, like the managers of all nursing homes in our country, was facing a shortage of staff. In 2012, she started renting rooms to students who couldn’t afford to rent an apartment, in exchange for spending 30 hours of a week with the elderly. I was particularly impressed by one student who wrote a business plan for his thesis with the help of one of the home’s residents. Another student had love problems and was dating a lot. The elderly resident was so eager for information about the dates that he would wait for him until 3am to hear about them. He came alive each time the love story progressed, and when the love faded, he offered a shoulder, warm words and encouragement.

Gea Sijpkes says that at first there was a lot of resistance and doubt about the idea of the elderly living side by side with students, with prejudice coming from all sides. “Students don’t have any respect for the elderly, they drink, they have fun”. But it turns out that if you choose people carefully and give them a chance, life in the nursing home becomes livelier. At Humanitas, students make pancakes and play board games with the elderly. When I visited, I saw a young student in a short skirt serving coffee and bringing smiles to the faces of the grey-haired residents, who looked at her affectionately. The director was not upset.

IV.

In Slovenia, around the same time as in the Netherlands, we introduced a good practice in 2012 and turned one of the homes for the elderly into a kindergarten during the summer holidays. During the holidays, many parents did not have childcare, so it was organised in the home. This year, Ana Petrič, director of the Notranje Gorice Home for the Elderly, opened a Montessori kindergarten in the same building. “All the research, practice and projects show that the elderly give a lot to the children and the children give a lot to the elderly,” she said in a post. Interest in enrolment is growing.

You were taken to the hospice by ambulance. Contrary to my expectations, there was no deathly silence, but rather a low, muted buzz. They bathed you. I brought your pillow from home. I hoped that you could smell the familiar scent of home, where, despite your wishes, I hadn’t been able to keep you for the final two days. I lay down next to you, although they said I shouldn’t; they said that all senses are heightened at the end of the journey and that I shouldn’t “cling” to you. I didn’t listen to them. I climbed over the wooden railing and whispered in your ear for the hundredth and two hundredth time that you were the person I loved most in the world. That you were the best mummy. And I cuddled you. Tatjana Fink, the director of the Ljubljana Hospice (Ljubhospic), came several times to ask me how I was and if I needed anything. She monitored you and also prepared me. She literally guided me through the stages of dying. It hurt me when she told me that you would no longer have water and food because it was hospice care. I moistened your mouth with swabs. Every time you swallowed I got confirmation that you weren’t dying yet, and I deluded myself into thinking that maybe you weren’t. That night your breathing changed.

Tatjana asked to see me in the morning. She told me that I had to let you go. She said that I was clinging to you too much and that you were clinging to life. I had to let you go, she said. “If you do that, she will die peacefully,” she told me. I resisted the idea of literally accompanying you to your death. But I did it. Quietly, as if I didn’t want you to hear me, I said you could go. Tell Dad he was the best, too, and give him a hug. Tell him I will look after the gang as usual. I got out of bed and told Tatjana that I was leaving and that I would not be coming back. With tears in my eyes, I told her that my conscience was burning with guilt for telling you that you could go.

An hour after I left, you died. You died exactly as the doctor at the psychiatric hospital in Ljubljana, who had treated you for insomnia, had told me a month earlier. He had ordered a detailed MRI scan, which showed that you would die of a disease other than your primary one. I never told you this. 

(I lived with my mother all my life, except for five years. She never had to go into a nursing home.)

Soon we will all be old

The number of old people is increasing everywhere. Soon we will all be old. There will be no one to take care of us unless we have at least one relative or family member willing to do so. On 1 January 2024, the Long-Term Care Act will come into force in Slovenia, which will allow us to receive a salary if we care for a family member. Will we return to our roots and live in large extended families again? Do we have guarantees that there will be less violence behind the walls of nursing homes? We need a new social contract in which we commit ourselves to raising the threshold of compassion for the elderly to the highest level of sensitivity. Nothing shocks society any more. The media may sound the alarm on websites or in print with stories of elder abuse, but in the long run the response is lukewarm. Instead of sensitivity to the world, screens and social media have brought us indifference and habituation. Violence and neglect are part of our lives, so many people simply wave away inadequate care for the elderly. Research shows that babies desperately need touch, cuddles and safe shelter to develop normally. But few write about the tenderness and touch that older people need. Even if not all of them need it, it is important to look deeply into their eyes and express gratitude — and interest. “There has been a deep erosion of values in relation to the older generation,” says Human Rights Ombudsman Peter Svetina. Our grandparents’ generation deserves better. We have found ourselves trapped in a cycle of time scarcity that has pushed us to the wall. With a lump in our throat, we have left our grandmothers and grandfathers in the care of a stranger who often lacks the experience, the will to take care of them, to wash them, to turn them. We have given concessions to large institutions rather than small boutique homes, and appointed political figures as directors, some of whom lack the competence to manage. And we have reached a point where, despite the many irregularities, despite the lack of uniform guidelines, it is impossible to get into a nursing home because the waiting lists are unbearably long. There are empty beds in homes because there is no staff to look after more residents. No one wants to work with the elderly. 

 Who is going to untie this Gordian knot? And when?