Lida Moniava: “We Are Supported Not By Companies From The Forbes List, But By Ordinary People”

Lida Moniava: “We Are Supported Not By Companies From The Forbes List, But By Ordinary People”
Lida Moniava: “We Are Supported Not By Companies From The Forbes List, But By Ordinary People”

Video: Lida Moniava: “We Are Supported Not By Companies From The Forbes List, But By Ordinary People”

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Video: Everyday I Have the Blues 2023, January
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Lida Moniava speaks softly and, answering questions, smiles modestly. Every day she receives dozens of calls from parents of terminally ill children, and then one after another writes posts on social networks to raise money for each new child. This is her job. And if you ask if she gets tired of her, Lida answers without hesitation: "I'm getting tired." But not at all from what everyone thinks about: not from calls and letters, not from all the new stories that often end in death, but from reports, tables and fear that tomorrow the hospice account will be empty.

- Why is a hospice, in which death is a common thing, is still primarily a place about life?

- We played a little with this phrase that hospice is about life. When we first started, people were generally afraid of this word and thought that the hospice was a stage in front of a cemetery or crematorium. In the first months of the existence of the children's hospice, we said that we were from the fund so as not to utter a frightening word. And we began to promote the theme that hospice is about life in order to minimize fear among people. Here children swim in the pool, walk, rejoice, communicate with everyone and live. Their dreams come true here. And now everyone already knows this phrase that hospice is about life, it really is so. If you look at the photographs from the children's hospice, it will become clear that there children are always having fun somewhere, flying in a hot air balloon, swimming on a boat. Now, for example, we are going to sail on a ship. In other words, we try to do soso that every day has as much life as possible. But all the same, it seems important to me not to forget that children die in hospice. We have 100 children dying a year - this is one child every three to four days, and there is also death in the hospice, and we also need to think and talk about this. And the hospice was created precisely so that the children would die well, so that they would not die in pain, in intensive care, alone. So there is life and death here.

- What, in your opinion, is happening with charity in the country today? Do you notice the changes?

- I think we have experienced a very big growth: a huge number of people became volunteers, started donating money, so-called recurrent subscribers appeared - people who subscribe to monthly donations to the hospice. Previously, this was only abroad. The state also began to actively help charitable organizations, grants and subsidies appeared. It's great, we are grateful for it, but at the same time it's also scary. After all, it is important that charitable organizations do not lose their independence, being dependent on a large amount of public money. In Europe, hospices are usually somewhere in the 20% state-run, and the remaining 80% are donations anyway. Now we may get the impression that thanks to subsidies from the government, the hospice is doing well and no longer needs help.In fact, only private donations from people help charities stay independent and generally work. And it is very important that everyone understands this.

Photo: Georgy Kardava
Photo: Georgy Kardava

© Georgy Kardava

- Are we talking about private donations or are we talking about corporate donations made by some companies, too?

- If we specifically mean the children's hospice, it is generally very difficult for us to work with companies. I had such an illusion that there are large, wealthy companies that do not help the hospice just because they do not know about us yet. We took a list of the 100 largest companies on the Russian Forbes list, and wrote a letter about our hospice to each one. When no one answered us, we started calling everyone. It seems that only one company transferred us 15,000 rubles, all the others found reasons to refuse. Some have already allocated their charitable budget, others have a difficult financial situation, and still others are already helping many foundations. As a result, hospice is not supported by companies from the Forbes list, but by ordinary people who transfer 100 or 500 rubles each. Among them there are those who, working in the company, begin to attract colleagues, but such,for the children's hospice to receive corporate charitable assistance from a large company, alas, not yet.

- How much money is required per day to fully cover all expenses and needs?

“The number of our new patients is growing every day. Last year, for example, we spent 500 million rubles. It seemed that we would never collect more than this amount. But more and more children are turning, and in order to help them, you need to have even more money. And this year, according to our assumptions, given the number of children who have already contacted us and may still apply, we will need 650 million rubles. It turns out that we need to collect about 1.5 million per day.

- How many children are now under the care of the hospice?

- Now there are 500 people. But every month we have about 40 new requests, some children die, we remove someone from the register because they feel better. To pick up each new child from the hospital, bring home from intensive care and provide everything necessary, you need 2 million rubles - and this is only for one person.

- You say that there was no such active support of the state before, but now it has appeared. That is, we can assume that everything has moved off the ground, there is some kind of dialogue?

- Now at the Moscow city level, the Moscow government is helping us a lot, and thanks to the fact that Nyuta Federmesser communicates a lot with all officials, everyone is very disposed to us. Recently, the mayor met with representatives of charities, and the children's hospice was also invited there. We were asked: "Well, how to help?" We said that we would soon open a hospital and we need help to improve the territory there and buy equipment for equipping it. To which the mayor said: “Yes, well, we will do everything, we will help. Write a letter. " That is, there seems to be no difficulty, what we ask is we get it. But in general, government money is very difficult in terms of reporting, we had to hire three employees who are only engaged in preparing reports for government agencies. You have to manually sit in Excel all day long, count the numbers,to provide data. Of course, the state gives money and has the right to demand reports, so that's okay. But it is very difficult for the hospice.

Hospice is supported not by companies from the Forbes list, but by ordinary people who transfer 100 or 500 rubles each

- Let's talk about the hospital that you just mentioned. It will be completed very soon, won't it?

- Yesterday we just went to this construction site, there are the last finishing works. And now it seems to us that the hospice is incredibly small, that we cannot fit in there. For example, in London, where the population is less than in Moscow, there are 4 children's hospices. We thought that we would have one building and all Moscow's problems would be solved. But this is not at all the case. Moscow probably needs 8 children's hospices. But all the same it is joyful that something will already appear. And maybe, when the first hospice has been operating for a couple of years, we will ask the Moscow government for a building for the next, second, hospice and somehow divide the children by districts, because it is difficult to transport children, for example, from Butovo to the other end of the city.

- The children's hospice constantly arranges outdoor events, including whole shifts in the camps. What are they needed for?

- We have about 6 camps a year, not only in summer. Mostly children come to the camps, who breathe through a tube, eat through another tube, who constantly have convulsions. We run camps to get these families out of their homes. They sit in their own captivity, and mom spends round the clock next to the child and his pipes - it is very hard and exhausting, it begins to seem that your life is over. And the camp is a place where no one will turn around and look sideways at all these tubes, at the noise of devices and in general at children who do not always look normal. This is primarily an opportunity for parents to feel that they are normal people, they can go to breakfast in a restaurant or go to a concert in the evening, communicate with other people who understand their problems, with the same parents. Parents also have a lot to learn,almost like resuscitation nurses. While the child is in intensive care, doctors and nurses do everything for him. And mom, in order to take him home, needs to master all the skills. This is taught in a medical college for 4 years, and here she has to figure it out in two weeks. And in the camps, we pay a lot of attention to educating parents. Various specialists come and show how to transplant, feed, and care for the tubes correctly. We have one camp for children with spinal muscular atrophy (SMA), these are children who can talk. The shift has just ended. For all of us, it’s an outlet, because the children talk there, and it’s more like a regular children's camp. And now we still have almost all children on electric carriages. These strollers are very expensive, but within a year the hospice bought them for almost everyone. So the children could move by themselves. We had a new boythey even wanted to expel him from the camp for the fact that he constantly left without asking. And this is a real victory: a completely immobilized child, who can only lift a finger, left without asking, and now they conduct educational conversations with him as with an ordinary teenager (laughs). It's great. But there was a girl who does not have an electric wheelchair. It was painful to look at her: the other children pressed the buttons and left, and she was sitting in her usual one, because the hospice had not yet been able to get her an electric wheelchair. Of course, it is very important for children to be able to move autonomously, and if they are provided with all this, they can make friends or even fall in love, drive away to talk. And if you don't give them all this, they will lie on the beds.a completely immobilized child, who can only lift a finger, left without asking, and now they conduct educational conversations with him as with an ordinary teenager (laughs). It's great. But there was a girl who does not have an electric wheelchair. It was painful to look at her: the other children pressed the buttons and left, and she was sitting in her usual one, because the hospice had not yet been able to get her an electric wheelchair. Of course, it is very important for children to be able to move autonomously, and if they are provided with all this, they can make friends or even fall in love, drive away to talk. And if you don't give them all this, they will lie on the beds.a completely immobilized child, who can only lift a finger, left without asking, and now they conduct educational conversations with him as with an ordinary teenager (laughs). It's great. But there was a girl who does not have an electric wheelchair. It was painful to look at her: the other children pressed the buttons and left, and she was sitting in her usual one, because the hospice had not yet been able to get her an electric wheelchair. Of course, it is very important for children to be able to move autonomously, and if they are provided with all this, they can make friends or even fall in love, drive away to talk. And if you don't give them all this, they will lie on the beds.It was painful to look at her: the other children pressed the buttons and left, and she was sitting in her usual one, because the hospice had not yet been able to get her an electric wheelchair. Of course, it is very important for children to be able to move autonomously, and if they are provided with all this, they can make friends or even fall in love, drive away to talk. And if you don't give them all this, they will lie on the beds.It was painful to look at her: the other children pressed the buttons and left, and she was sitting in her usual one, because the hospice had not yet been able to get her an electric wheelchair. Of course, it is very important for children to be able to move autonomously, and if they are provided with all this, they can make friends or even fall in love, drive away to talk. And if you don't give them all this, they will lie on the beds.

Photo: Georgy Kardava
Photo: Georgy Kardava

© Georgy Kardava

- There is a practice in the world to support patients with spinal muscular atrophy, including the possibility of their integration into society. They are helped to find remote work or are hired as interns in large companies. Do we have such precedents today?

- In Russia, the quality of life of such children has changed only recently. Previously, almost all the children died before the age of 18, but an NIV apparatus for lung ventilation, a cough and other equipment appeared. Now they can live up to 40 years and longer. And if earlier families abandoned school, adhering to the logic “why waste time on this, if the child dies, we'd better make him happy every day”, now there is a sense of studying at school, since it is important to be able to work. We have created a special hospice for young adults, we take patients there from the age of 18. And at first, we thought that we would find a job for everyone: we would write to Facebook, there would be offers for remote employment, we would distribute it - and everyone would be happy. It turned out that everything is much more complicated: these guys do not know how to work, they almost did not go to school, no one deals with them,they are very childish, they enjoy playing with the computer much more than working. Any action takes them much more time - the word by letter must be typed with the mouse. It turns out that it is not enough to find an employer who will give these guys the same work that gives ordinary people. The first step is to prepare patients for work. We have had cases when they suddenly began to work poorly, did not complete anything on time. So everything is more complicated than it seems from the outside. We want a social teacher to work for us: for each teenager, he will be able to select a job that the child can really cope with, and will not take 10 times more without evaluating his strength. We really want our teenagers to be offered jobs, they are really fond of design or, for example, programming, but you need to understandthat such an employee will still have to be invested. However, it is very important to do this. All over the world, guys with a similar diagnosis graduate from institutes, work, come up with something of their own. I watched a film where a young man with Duchenne myopathy visited eight guys with the same syndrome and made a story about how they live. Someone organizes rock festivals, someone does something at the church. In general, it is very important that they all fit into an active social life, but one must understand that this is difficult for many reasons. Right now, for example, many have graduated from school, passed the Unified State Exam, and they need to study further, but institutes are almost not adapted to move in a wheelchair. We are trying to find distance learning options, but not such that they would send you an assignment, you did it, and then only passed the session, but with video tutorials and feedback.Now we have to recruit some one-time courses, that's all the training.

Photo: Georgy Kardava
Photo: Georgy Kardava

© Georgy Kardava

- How do you deal with fatigue and how do you help hospice staff cope with it?

- It seems to me that emotional burnout very often begins due to unrealized expectations. Many people think, well, they had a boring job, they sat in the office or in the bank all day at the computer, and it was so dreary. And now they will get down to real business, go to a hospice and radically change their lives. They come to the hospice, but life does not change, because it consists of the same set as in any other place: a computer, documents, ordinary small routine tasks. We are now spending a lot of effort on the selection of employees so that they come with the right motivation, so that they do not want to change the world and save children, because they will not be able to do this by filling out the application boards. And it will quickly end in frustration and burnout. It is necessary that people be interested in the social sphere and at the same time they would be ready to do all these routine, boring things,of which our life consists. But on the other hand, it is normal for a person to work in a hospice for a while and leave. I am even glad that the circle of people is expanding who understand what hospice is, know that these children can be helped and exactly how to help. An employee who has worked with us for two years will still tell a huge number of people about the hospice, he will carry our idea further. So I don’t think it’s awful if someone quits because they’re unable to cope with the hospice job. It's the same in banks and other places.anyway he will tell a huge number of people about the hospice, he will carry our idea further. So I don’t think it’s awful if someone quits because they’re unable to cope with the hospice job. It's the same in banks and other places.anyway he will tell a huge number of people about the hospice, he will carry our idea further. So I don’t think it’s awful if someone quits because they’re unable to cope with the hospice job. It's the same in banks and other places.

- Are you looking for a balance between work, which is clearly more than just work for you, and personal time?

- I have a slightly different story. I was a volunteer and came to the hospice from this volunteer life. And it turned out that at first I talked with the children all the time, and then I began to do things that I was not interested in at all: financing issues, finding employees, building some kind of internal work regulations. And I want something different, I want to play with the children. But you understand: in order to play with these children and so that they are not in intensive care, you must first do all the previous things. And since the main joy for me is when I manage to spend time with children, on weekends I try to go to hospice events in order to continue to volunteer with them. From this, strength appears for the entire next week. And so for most of our office employees. In order not to burn out, it is important for them to see children and understand why all these tables,which you do on weekdays.

- Do the organizations at whose venues you hold hospice events get in touch or do you take the initiative, refer to theaters, museums, swimming pools, and so on?

- Most often they call us. Recently, for example, there was a match, we got a call and asked if we would like to bring our children. On New Year's Eve, they also cut off our phone, invite us to different Christmas trees. A holiday is an important, good thing, but we really want children to be able to go somewhere every day. And this is much more difficult to organize. For example, the playground, where we hold hospice events once a month, is afraid to receive our children at other times, because the resuscitator comes with us, we bring all the equipment, they are calm. And to imagine that such a child will come at another time, when there is no doctor nearby, is scary. This is normal. Our goal is to find places where our children can come on a daily basis, on a daily basis, and not to a formal hospice event, with a doctor, photographer and ambulance. After all, it is very important for a family to understandthat a normal life can be more than once a month.

Many people think, well, they had a boring job, they were sitting in the office or in the bank all day at the computer, and it was so sad. And now they will get down to real business, go to the hospice and radically change their lives.

- Are there any initiatives from not organizations, companies, but private people?

- Yes, and this is the most valuable thing. For example, we have a hospice friend with his own yacht, and he came up with the idea that children can ride it. Then he wrote to friends from the yacht club, told about us, offered to join. As a result, we gathered 100 people, a bunch of yachts rolled us. It turns out that 20 tickets were not allocated by the decision of the management, but people self-organized and shared the good that they have. It's worth a lot.

- How can an outsider understand what he can share?

- You can share everything. Once we got a call from a girl who has her own beauty salon and said: "Let my mothers do beautiful haircuts." And for the second year already, our mothers have been cutting their hair there, and then they write us letters: "Hurray, I felt like a woman." It happens that manicure specialists suggest: "For girls-patients or mothers, we can have a manicure." And this is also in great demand. The list can be long. Someone wants to arrange a culinary holiday, come and cook some extraordinary dish. Or, for example, a person has a dog, he comes with his pet, and the child lies on it, strokes, and this brings a lot of joy to everyone. Someone has a car - you can give a lift to a sick child who otherwise would not leave the house at all. And someone just has time, and people in our office are sitting with documents, helping to sort things out,or, on the contrary, they come to the child, to their parents, chatting about something: how they went on vacation, what is the weather outside. Even this is a huge help to a family with a sick child, they meet some kind of life outside. It seems to me that everyone can help with what he himself likes to do, what he loves. When you share your loved ones, it is for your joy, and the child's family is happy. All possible ways to help are registered on our website, there are a lot of them, and everyone can choose what is more interesting to him, according to his capabilities. For example, you can arrange your birthday in favor of a children's hospice: refuse gifts, instead ask friends and guests to donate money. You can hold a small fair at work. For example, bake cookies and sell them for 100 rubles, and transfer the proceeds to a hospice. Or, here we are, we opened a charity online store.There are all sorts of pretty things related to the sea and lighthouses - we are called "House with a lighthouse." There are cups, T-shirts, jewelry, dishes. You can buy a gift there for a friend, and this will also be a help. All the money from sales goes to the children's hospice.

- Do you think anyone can become a volunteer?

- Yes, anyone. For example, in England we were told that they are very fond of people with depression. It seemed to me that a person in depression is a contraindication for a volunteer. It turns out the opposite. Then I thought that you shouldn't take people who have recently died someone close to volunteers, because it will be very painful for them and they can hardly restrain themselves, it will somehow result. But no, and you can also find some kind of work for them, for example, in the office, helping to collect parcels for children. A woman came to us, very elderly, for many, many years she worked as a teacher. Our office was next to her house, and she helped fill out the paperwork and did it perfectly.

- For you personally, what is the most difficult thing in your work now?

- It is very difficult to collect money, because it is a lot of stress when 500 children are under care. And it is very scary that at some point there will not be enough money to pay employees, to buy consumables and devices. I was already scared, and now the hospital will open. Maintaining a 4-storey building is generally a disaster. Every morning I see how much money came to our account the day before, how many months are left in advance. Now the hospice has money for three months in advance. And you constantly think: what if they end up later?

Photo: Georgy Kardava
Photo: Georgy Kardava

© Georgy Kardava

- And what has changed in your personal worldview, attitude during your work in charity, including in the hospice? What has passed, for example, from the category of "important" to unimportant and vice versa?

- Usually they say: "I came to the hospice and now I understand that everything else is nonsense." No, I didn't have anything like that (laughs). It's amazing to work in charity. When you live in an ordinary world, a lot of bad things happen around - dishonest acts, bad things. And the hospice is always receiving calls from people who are ready to help, to give something of their own, to share something. Someone wants to give money. Yesterday I went to a cafe, and there a girl came up to me to say that she is the owner of the establishment and wants to help the hospice. Every day we meet with all kinds of kindness, and it's an incredibly wonderful life. In general, it seems to us that hospice is such a separate world where everyone wants to help each other. People begin to show their best qualities around these children.

- How has society as a whole changed during your work in charity? You just said, for example, that it is very important for children not to look at them, not to look at them. Do we have any progress in this sense?

- Well, yes, something is changing. But changes should begin not even with society, but with the self-awareness of family members of terminally ill people. When the history of the hospice was just beginning, families believed that a sick child was such a defeat that it is generally embarrassing to talk about, they hid their misfortune, tried to hide the child from everyone. We had a family that only took the child out into the street at night, because during the day they were ashamed. And now there is almost no such thing thanks to publications on this topic. It seems to me that people are beginning to think that they have the right to a normal life, just like the rest, they start to defend their rights. For example, before, my mother, with her head down, simply left the intensive care unit in tears if she was not allowed there. Now she begins to demand, explain that she has the right to be there, is trying to get her in.Previously, any official could say, they say, you have a bedridden child, why does he need a wheelchair, why does he need orthopedic shoes, I will not prescribe anything for you. And mothers also left with nothing. Now parents know that they have rights, they know how to defend them. And officials are already afraid not to include in the individual rehabilitation program what the children are really supposed to do. And through such willpower of parents, society begins to change. Unfortunately, this is not all from people to disabled people, but on the contrary: disabled people are forced to organize and do everything, as in Europe, which requires a lot of energy from them. A girl came to us with a lecture, she is now about 30 years old, she has spinal muscular atrophy (SMA). She told how she loves to travel, flies on airplanes, travels everywhere. And what is it worth when you come and they tell you:"We have no way to carry you on the plane, sit on the floor and drag you on a drag." And she endures all this for the sake of being able to travel. She explained that when you have inner strength, you can cope with everything with a smile, and when you have no strength, you start thinking: it is better to stay at home and not fly anywhere. But due to the fact that many such families have willpower, they change the whole world around them, help us change.

- Lida, but there are times when it seems that there is no strength at all, and your hands are lowered?

- I often have this, because I am very bored sitting with tables. But as soon as I start thinking, everything, I'm tired, the phone rings, and the parents of some child say that he is in intensive care, they want to take him home, but the doctors say that this is impossible, that the equipment is needed, and it costs 2 million rubles. And they have no money, and, probably, they will never be able to take it. But I know how to help them, and this is very motivating to drive away sad thoughts and start organizing help, because in fact it is easy to help them, and in two weeks the child may be at home. And the hospice has mechanisms for how to do this. And such calls from new families, who are still at a loss and do not know how to cope with them, help a lot not to turn sour.>

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