Nyuta Federmesser: "Charity Becomes Hygiene"

Nyuta Federmesser: "Charity Becomes Hygiene"
Nyuta Federmesser: "Charity Becomes Hygiene"

Video: Nyuta Federmesser: "Charity Becomes Hygiene"

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Video: Жизнь на всю оставшуюся жизнь | Nyuta Federmesser | TEDxSadovoeRingWomen 2023, January
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When you talk to Nyuta Federmesser, you count every minute - the time of the founder of the Vera hospice fund and the head of the Center for Palliative Medicine is too expensive to waste. So you think, Nyuta herself will never rush, interrupt and show that at this time her phone is being torn apart by calls, messages and letters on dozens of questions at the same time. She, as always, is calm, ironic and immediately makes it clear that you should not wear a "mournful face" to talk about charity and hospices.

- The Vera Hospice Aid Fund spends a lot of effort to explain to the public that hospice is about life, not death. Do you think outsiders understand this?

- No, not yet. The main problem in palliative care today is the lack of demand for it. People generally do not understand what it is, why it is necessary, what to do with it. After all, someone did not even hear these words - hospice and palliative. Choosing a new slogan for the Vera hospice fund - “Life for the rest of your life” - we conducted a study of what associations the term “hospice” evokes in people. It turned out to be fear, death, pain, loneliness. That is why people do not want to understand, they are afraid. And they try to drive away from themselves as much as possible the thought of seeking help from a hospice, even if someone is seriously ill at home. That is why we decided that we are definitely taking this slogan. And the main task is to change such an associative array in the next three years. Our favorite phrase, with which the Vera foundation has lived for more than ten years - “If a person cannot be cured,this does not mean that he cannot be helped,”she clearly and somehow very correctly entered the minds of people and defined the place of hospice in the health care system: it is a home for those who cannot be cured, but who can be helped. And this phrase stuck in people's heads. Unfortunately, this was not the work of the Ministry of Health, not of doctors, but only of the Vera Foundation. By the way, this is quite funny, but at the very beginning, 10 years ago, when these posters had just appeared in the Moscow metro, they began to call us and ask: "Tell me, please, is this a fund to fight drug addiction?" (laughs). Now no one asks such questions.unfortunately, this is not the work of the Ministry of Health, not of doctors, but only of the Vera Foundation. By the way, this is quite funny, but at the very beginning, 10 years ago, when these posters had just appeared in the Moscow metro, they began to call us and ask: "Tell me, please, is this a fund to fight drug addiction?" (laughs). Now no one asks such questions.unfortunately, this is not the work of the Ministry of Health, not of doctors, but only of the Vera Foundation. By the way, this is quite funny, but at the very beginning, 10 years ago, when these posters had just appeared in the Moscow metro, they began to call us and ask: "Tell me, please, is this a fund to fight drug addiction?" (laughs). Now no one asks such questions.

- What did you do or are going to do so that understanding appears instead of questions?

- We were able to formulate that one of the key problems is the lack of demand for quality of life at the end of life. People just don't understand what hospice is. How can you want to eat an oyster if you don't even know that an oyster is edible. It's the same here. We decided that we have two main informational tasks. The first one is to change this associative array, because hospice is really about life and about love. The second is to create a demand for palliative care, to inform people that the last days of life can be spent with dignity. The last days of life and dying, by the way, are two completely different concepts. You know, if a person's death came quickly - he was hit by a car, for example, - people remember his last days: “Wow, really, how he felt, he said goodbye before death”. Or, here, I had a friend who died, crashed in a car.I remember very well that his mother said at the funeral: “So I came home, and there the sink was disassembled, he started to fix it and didn't fix it. And the coffee is half-drunk. " She has had it in her head all her life - an unfinished sink, half-drunk coffee and a life that was not lived by her son.

It became obvious that it was necessary to explain all this to people in a completely different way. Now, if we form an understanding of what palliative care and hospice are, people will begin to demand exactly this. When we come to the dental office, we know that they will give us preventive pain relief there. That is, first we will receive an injection, and then we will be treated for what is causing us pain. Before that, it was different. They started drilling for us, and we said: “Oh, what are you doing! What a nightmare!" And the doctor answered: “What, inject? Well, come on, coward, let's inject! " And even earlier, such issues were not discussed at all. It hurt to go to the dentist. The tooth was removed without anesthesia, you clung to the armrests or to mom, if mom was allowed in, and she was there. Today you know that you don't have to be afraid of a dentist, because the place of treatment will be anesthetized and this will provide comfort. It's the same with palliative care. Actually,in the process of dying, everything is quite predictable if a person dies from a progressive chronic disease. Experienced doctors working in this field will tell and explain to relatives and the patient what will happen and how. They can calm and relieve not only pain, but also fear of the unknown. There are tons of things that can be discussed, said to calm anxiety. This is work to anticipate severe symptoms that plunge loved ones into a state of horror and hell if death occurs without our accompaniment. And if I step a little further, I will tell you that palliative care and obstetrics are about the same thing. They say in our country: “What, before they gave birth under a bush, they cut the umbilical cord with a sickle, and that's okay.” When doctors try to reduce child and maternal mortality, they are proactive.A doctor in obstetrics at the beginning of life and a doctor in palliative at the end of life is a doctor who accompanies the processes. There is no task to cure, because to be born and die is not a disease. This is a normal process. There is a task - to accompany two very difficult moments: to prevent difficulties, the hardest components that may appear, and to work them out ahead of time. And, secondly, we need to convey to people, to instill in their heads the understanding that palliative care is our right to dignity, so that your last days pass without pain, dirt and humiliation.and work out ahead of time. And, secondly, we need to convey to people, to instill in their heads the understanding that palliative care is our right to dignity, so that your last days pass without pain, dirt and humiliation.and work out ahead of time. And, secondly, we need to convey to people, to instill in their heads the understanding that palliative care is our right to dignity, so that your last days pass without pain, dirt and humiliation.

Photo: Georgy Kardava
Photo: Georgy Kardava

© Georgy Kardava

- You often compare hospice to home …

- The hospice is the home, the last home. And a place of love. Here, too, in fact, everything is quite simple. If the truth is spoken between us, if we stopped lying to each other and said the most important thing: “I'm dying, you know this, I know this,” then we begin to appreciate the remaining time. And then we become wise enough so that rubbish and husks go to the side. And people really live. Hospice patients enjoy any weather, there is no bad weather for them, because any is beautiful. They delight in the guests. Or, on the contrary, they can easily say: "Let this one don't come to me anymore." They have little time left, they will no longer tolerate anything out of politeness. They rejoice at some favorite food, a ray of the sun, and even rejoice at the clouds. An amazing story for me was the elections in the hospice and in the palliative care center,because it was the first time I saw people who were really consciously voting. One man said that he had never voted in his life, even during the Soviet Union he ignored all this, and now he will vote because he will not have another chance. There was a woman who literally died two or three minutes after she voted for Putin, having previously stroked his photo on a poster. And so tenderly she said: "Mine, mine." And it was absolutely unbelievable, her son and I stood and laughed at the touching picture and such a naive expression of feelings - very open, which people do not do at the vote. Usually they tick the box with stern faces. And after that I told her: "Oh, listen, I ran out of badges" I chose the president of the country ", now I will run and bring you." I run away, after three minutes I return and understand:the son is sitting next to her and still does not see, but I can already see and say: "But mom is gone." And this is some kind of fantastic life for the rest of your life, because the last thing you did in your life was to elect a president. Funny and touching.

- Probably, for many it is unexpected to see this “Life for the rest of your life” in the hospice?

- When we are going to a hospital or a hospice, we put on a mournful face and prepare to suffer and sympathize in advance, just leaving the subway or car. In fact, patients do not want to spend the rest of their time getting that sympathy. They will mark your new shoes, they will say - beautiful earrings, good hair. They will say what a thousand people outside the hospice will not tell you. They notice and say exactly what we want to hear and never hear, because, counting on a lot of time ahead and its infinity, we do not tell each other the main thing. We allow ourselves to quarrel, slam the door. "I hate you, let's get divorced" - that's all. And there is only "I love you." "Sorry, love, forgive, you are the best." It's always like this in parting. When my child and I have a fight, and then we see off to school,all the same we hug him: "Beloved crocodile, go kiss." You leave to rest, get on the plane, try to keep things in order, call your parents. And here people part forever, and they know it. Even if it was not said, they looked at each other and said everything in silence. It is the concentration of life and the concentration of love. You can really feel it when you come to the hospice. There is a completely different flow of time, some kind of hole between the worlds. Slower and quieter. Crocuses bloom in the first Moscow hospice in the center of Moscow when there is still snow everywhere. There is some amazing cherry, which does not grow anywhere else in this part of our country.and they know it. Even if it was not said, they looked at each other and said everything in silence. It is the concentration of life and the concentration of love. You can really feel it when you come to the hospice. There is a completely different flow of time, some kind of hole between the worlds. Slower and quieter. Crocuses bloom in the first Moscow hospice in the center of Moscow when there is still snow everywhere. There is some amazing cherry, which does not grow anywhere else in this part of our country.and they know it. Even if it was not said, they looked at each other and said everything in silence. It is the concentration of life and the concentration of love. You can really feel it when you come to the hospice. There is a completely different flow of time, some kind of hole between the worlds. Slower and quieter. Crocuses bloom in the first Moscow hospice in the center of Moscow when there is still snow everywhere. There is some amazing cherry, which does not grow anywhere else in this part of our country.when there is still snow everywhere. There is some amazing cherry, which does not grow anywhere else in this part of our country.when there is still snow everywhere. There is some amazing cherry, which does not grow anywhere else in this part of our country.

Photo: Georgy Kardava
Photo: Georgy Kardava

© Georgy Kardava

- Do visitors stop being afraid when they end up in a hospice?

- Let's take a specific example. Sergei Sobyanin recently came to visit us. And it was clear that he was afraid of the hospice, just like any other person who had never been there. He came nervous and the first thing he did was a remark to the photographer and the security guard: “What is it, here is a medical institution, there are heavy people, why are you walking in front of me taking pictures, and you say something into your earphone. Come on, all from here! " I said: "Sergei Semenovich, here is the hospice, let me show you everything." And I see how he begins to look around, and he, like every relative, every volunteer who comes for the first time, has a stupor. No tiled walls, no bad smell, no crying relatives in black. The dog is running. He is amazed, and I say: “This is a volunteer dog. Not to your arrival, do not think, we just have volunteer dogs. " He immediately reacts:"I have a dog too." Then I say: “Today in the hospice people are signing, we can go to the ward to congratulate the newlyweds.” And we come to the ward, where it is immediately clear who the patient is. On the bed lies a pale, green Tolya, and Olya fusses around. And he so neatly, neatly begins to talk with the groom, and in this neat conversation Tolya says the phrase: "And for two with Olya we have seven children." Sergei Semenovich changes in his face and says: "This is what you give!", And then immediately stretches out his hand to him like a man. And I understand: that's it, the ice has broken, the fear is gone, the mayor doesn't care at all that there is a dying person in front of him. They had a male conversation. Do you understand? This is the place of truth, where it comes out in a second. Falseness leaves, false leaves, therefore hospice is about love. But until we make it public, the myths will remain.We need to open doors, we need to let volunteers in, we need to destroy these stupid stereotypes.

- You destroy stereotypes, including with the help of Facebook, where you have a huge audience. How do you find the time for this?

- It has become almost impossible to devote time to this, which is why I feel remorse and suffer a lot. I have a wild amount of unwritten posts in my head and the most important texts. In general, I am so arranged that in order to understand something, I have to write. At least to speak, to say aloud - I am a philologist by training. This applies to any component of my work. And if I have written a text, then I must read it aloud, pronounce it in order to understand if my words and accents are correctly placed. And I just physically suffer that I do not have time. We need to tell more, take more pictures. I need pictures of life in a hospice and palliative care center. I need photos of volunteers, reportage photos of what is happening, and at least some minimal comments on these frames. After all, the goal is precisely the removal of barriers,informing. In general, I am very conscious of this and follow the subscribers and their reactions. As a result, I live with a phone in the shower, in the toilet, on vacation. I tell my eldest son: “Listen, it's impossible to sit at the table with you, I see you with the phone all the time, put it down at last”. He answers: "What about you?" After all, I sit in the same way, only my phone is not in front of my nose, but lies on the table. And I see that at some meetings, everyone listens and writes down as decent ones, and I sit and practice my finger motor skills.only my phone is not in front of my nose, but lies on the table. And I see that at some meetings, everyone listens and writes down as decent ones, and I sit and practice my finger motor skills.only my phone is not in front of my nose, but lies on the table. And I see that at some meetings, everyone listens and writes down as decent ones, and I sit and practice my finger motor skills.

Hospice patients notice and say what we so want to hear and never hear. Because, counting on a lot of time ahead and its infinity, we do not tell each other the main thing

- If we talk about trends in the field of charity, what changes are taking place now?

- It seems to me that there are fewer charitable events, especially in Moscow. Maybe in other cities and regions it is still growing, but in our country it is already fading away, because Moscow is a city that lives at a wild pace, which gets tired of everything very quickly and quickly gets tired of everything. Try now to invite people to a charity auction. "Ugh, we've been there 20 times already." "So what, what will Urgant lead, all the same it all already happened." You need to come up with new and new ways all the time. And even now, thank God, we can finally say that charity is not becoming a fashion, but the norm. And the fact that people began to subscribe to recurring payments (monthly standing payments. - Approx. RBC Style), just means that fashion has been replaced by consciousness. Fashionable is when you bought a certain non-random bag and go with it,so that everyone can see, pay attention, discuss. Recurring payments are already the norm, and this is absolute happiness. Charity is not something incredibly high - “to create blessings”. No, “donation” is a more peaceful and different calm word. And even the word “sacrifice” I don't really like it either, because there is no sacrifice in it. It's just your civic consciousness. Chekhov wrote that one should knock on the door of every happy person and remind him that there are unhappy people. So you need to knock on your conscience and remind you that someone is worse off. Academician Likhachev said surprisingly about hospices: they are very important to our society, in which the level of pain has exceeded all conceivable limits. And hospice is an opportunity to justify one's existence, to help. And here it is important that all the pathos goes away. For all of us, charity is now becoming hygiene.This is how we understand that we cannot but brush our teeth in the morning, not watch the film "Summer", we also understand that we cannot fail to be subscribed to recurring payments of a particular fund. Sooner or later, alas, trouble will come to every home. Helping others, we help ourselves first of all, because we gain confidence that this hygiene of society will also spread to us, we calm ourselves. The fact that the fashion for charity, as it seems to us, is passing, does not mean that it is going away, but is taking on completely different dimensions. Drawing comparisons from the world of fashion, charity used to be couture, and now it is becoming ready-to-wear. It is high time.Helping others, we help ourselves first of all, because we gain confidence that this hygiene of society will also spread to us, we calm ourselves. The fact that the fashion for charity, as it seems to us, is passing, does not mean that it is going away, but is taking on completely different dimensions. Drawing comparisons from the world of fashion, charity used to be couture, and now it is becoming ready-to-wear. It is high time.Helping others, we help ourselves first of all, because we gain confidence that this hygiene of society will also spread to us, we calm ourselves. The fact that the fashion for charity, as it seems to us, is passing, does not mean that it is going away, but is taking on completely different dimensions. Drawing comparisons from the world of fashion, charity used to be couture, and now it is becoming ready-to-wear. It is high time.

- And what about the division into public and non-public assistance?

- I am sympathetic to people who say: "Yes, I am ready to help, but not publicly." I understand their motives, but I want to shake them all up and shout: "This is wrong!" Everything has just begun to return to normal, but this requires so much effort. We are terribly lacking role models. People want to rely on someone they trust, whom they are used to seeing on TV, in newspapers or magazines. We do not have the right to help quietly yet; we must help loudly. A famous person can attract 1000 unknown people at one time who will subscribe to recurring payments, and it is irresponsible just to keep silent about charity.

Photo: Georgy Kardava
Photo: Georgy Kardava

© Georgy Kardava

- Now, for example, you can buy a T-shirt with a print (T-shirt "Not life, but a fairy tale", published in honor of the book of the same name by Alena Doletskaya. - Approx. "RBC Style") in support of the Vera hospice fund. It is also one of the forms of public statement, and also fashionable.

- Yes, this is all very important. I'm not a fashionable person at all, I don't know all these tendencies, names. It is important for me, firstly, to be comfortable, and secondly, not to be displayed. Clothes are self-expression, you dress the way you see yourself. And when I watch the conditional "Fashionable Sentence", I am overwhelmed by pain for people: yes, they have become very beautiful, transformed, but up to that moment, when everyone was scolding, it was she, and now some completely alien aunt, not her. I just love prints - anywhere, because it's about you. You will never wear a T-shirt with a slogan that you don't relate to. And it will never go out of style, it will always be relevant, because it makes it possible to say everything with a closed mouth. The other day I changed my Facebook profile picture: now I am wearing a T-shirt with the words “Caution! I do not correct my speech production ",which a member of our board gave me. And some incredible number of people have already said: "Nyuta, we want the same." And I’m already looking for someone who will print these T-shirts for me, I’m already counting how much we can earn on them, I remember those who wanted, so that they could not cut it later (laughs).

Anyone wearing a Life for the Rest of Your Life T-shirt is a person who brings amazing knowledge to the world. Each person in Alena Doletskaya's T-shirt is the one who brings warmth. Anyone wearing a T-shirt “I'm Not Correcting My Speech Production” is a person whose chest actually says “Stop Lying”. And this is all very important. In any way, we must inform people that they have the right to dignity and pain relief at the end of their lives.

- People who do charity work are often asked about burnout. Have you encountered him?

- I don't believe in burnout. If a person has chosen the right field of activity, then his work is not burnout, but "burning". She lifts up to heaven. If I really feel bad, I go to the hospital to see patients and relatives. It is hard for me to be in bureaucratic offices, it is very difficult to deal with finances, I just hang myself from it. Many aspects of work are not easy, but not those about which they just say: "Oh, how hard it must be in the hospice, your patients" recover "like flies, how do you cope there?" Yes, we are doing great. There is no more rewarding field in medicine, because every second you feel your usefulness. You go into a four-bed ward and you cannot leave it, because there are four people, and everyone needs you: make the light brighter, straighten the curtain, open the window; blowing, warm, cold, turn your leg,To wash a cup, give a drink, correct teeth, scratch an ear - this is infinity. You don't feel for a second that you're out of work. We will all die sooner or later, but the fact that with every movement, every action you bring a person obvious benefit is a real drug. It turns you on so much and it certainly doesn't burn you out.

In palliative care, relatives who have lost a child, mother, husband, brother come to visit us for years to express their gratitude. What is burnout? I will probably die of fatigue, but not of emotional burnout (laughs). If I am disconnected from work, I will go crazy. The one who is out of place burns out. I think this applies to any area. Now, working in a bank, I probably would have burned out for sure. Although I think I would rather blow it up (laughs) …>

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