These kids put it to a standstill with the question of love. They catch her sunbeam by the window. She shakes them for eight hours, if the spasms don’t allow them to sleep. They trust her with their children and sometimes terrible secrets. And she just wants to catch them over the precipice. Irina Tishchenko, the nanny of the children’s hospice “the House with lighthouse,” said “Pravmiru” the importance of being with a terminally ill child together until the end and time to tell him the truth.
Irina Tishchenko. Photo: Sergey Shedrin
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Do you know what love is?
In September it will be three years since I work in a hospice. About hospice I told my friend, who also worked here as a nanny. By education I am an engineer-physicist.
When I worked in social services with persons with disabilities. And once I was told with a huge list to get around the district – to collect statistics about sick children. When I was around family by family, and seen what are children and how they live, what pain my parents, I had a very serious condition. I cried two weeks. The tears flowed and flowed from the pain and helplessness. I couldn’t do for them, I just collected statistics.
It remained in the memory, and when I found out that there is a hospice, my heart sank. I realized that I had come to the right place have been looking for a way. At the interview I was asked how I feel about terminally ill children, am I afraid of disabled children, if I scared they will run and whether or not I do it. I said I wanted.
I started my job as a nanny.
Work in a hospice – another dimension is just. It is important to be here now, did not delay, tomorrow may not be. This is the place where you can easily talk about death, and about many things that went into our society as taboo.
The hospice has the brotherhood of nurses. We are his children called “angladeshi”. Us good words. We share with each other joys and sorrows. I can write in the chat that today the boy who I work for, suddenly grabbed the toy wasn’t enough before, and then suddenly turned. And for all this will be happiness and joy.
I much admire these kids. Such little lies, already a fan of hard rock. Come in a family, and you say: he likes the band “Aria”. Another takes food only under radio “Chanson”. Must sound harsh asepsi male voice, then he allows himself to feed. Another girl – a fan of Anna Herman.
One teenager, who died a year ago from cancer, was very fond of “Ode to joy” and the “Marseillaise.” One day I came to him, and he was waiting for his girlfriend. We sitting with him, and he said to me: “do you know what love is?” I say, “Well, I think I know.” If I understand, he’s my son. And he continues: “do You know what love is? You only think you know. You think love is hugs and kisses? Nothing of the sort! Love is when you can talk to. Or when you can sit down and talk without words”.
Imagine a boy with such burning eyes told me that. But before leaving, he dictated to me a list of different movies that I had reviewed, it was about love, and fighters. I remember the last words he said to me, “you still all ahead! And unexpected happiness can happen at any moment.”
It catches a ray of sunshine, and I stood next to
The hospice helps children with genetic abnormalities like patau syndrome or rett, neuromuscular, with severe CNS lesions, with cancer. Have family a long way before meeting with hospice. Prior to this, parents have a lot of energy spent on it to just survive with this child, taking the necessary meds, diapers and all the time embossing, that someone arguing. Time and effort on a child’s development is not enough.
We meet children at different stages of their lives. Every family is your space and laws. This must be considered. When you do, you don’t have to discomfort. Will have to wait until the family starts to trust someone, need a day, someone month. There are different families. Come one – my mother gives you a clear plan so much time on cartoons, so much to the owner, all painted. In another family I can say: “Do with it what you want, that’s a mountain of toys, give him some”. In the third say that the child is unresponsive, change the diaper and feed.
This is the saddest moment. Parents desperate to give something to a child. And even someone who just lies a lot to give. Put on some music, sing, read, hold hands with, to hold, to give up a toy, and so on. It will be necessary experience.
It is important to allow the child to come true, to help him discover the world.
The children can make something to do with myself. The child shows the ratio of facial expressions, blinking, gestures. Kirill, for whom I come once a week, maybe with something to agree, and what is not, as any boy. It cannot be turned, to plant or do something else without asking. Even have to talk like any child.
With Kirill at first, we played a scene from “the Little Prince” when the Fox was asked to tame him. First, he got used to my voice, the presence, and then let her touch his finger. And so gradually my world was connected with his world. And together we created something new.
Eventually there comes a time when the child does not want you to leave. Or a mother writes to me: “I told my son that there would come a nurse Ira, he smiled, laughed, he is waiting for you!” How not to fly on the wings of this child? Or when the child is not talking, the only thing that suddenly creeps up and climbs on my lap. I’m crying from happiness at such moments. And the parents weep when I told them in the evening saying: “Imagine, he did today!” For example, first picked up a toy.
One of my first girls was a genetic disease. When I arrived, she was sitting in a big bed like in the cage, she was in her 9th year. The family had many children, the forces on it are not particularly enough. She had become so accustomed to be always the one that was surprised about my appearance there. We began to walk together, wash dishes, wash hands, she could contemplate the water.
She bad seen, and always catching a ray of sunshine at the window, and I was standing next to her. I shared her world and she cared. Through the year, even the parents couldn’t know. She became more independent and neat. If earlier she was fed in a lying position – swaddled, forced to open his mouth there poured a mess, a year later, she was sitting together with all behind a table that was included in the family.
I have to be prepared for the fact that he dies in my arms
We tell the family that even if the kid is that special, still needs to develop, should not be stopping anything.
The nanny needs a working mom. A woman should not dwell on a child’s life, it should be in your space. And it shall come to pass, be realized. Parents need to walk to go out to do their business. In addition, the nurse coming into the family, expanding the circle of acquaintances of the child. Family should not be a closed system, we want the kid to have many friends.
Kirill I go once a week, someone two. Every day in the same family does not work. Even partly right, because we want parents got used to the fact that their world consists of different friendly people. Today I have Kirill, yesterday was dying of cancer boy, the next day a new boy, who is still my mom’s-mom’s of others and even allows you to roll it pram.
I think the nanny is the discoverer and translator of the needs of the child. Need to look for the language that you understand. The movement of the eyes, shaking the handle, the head turning, the sound of the growl-grunt. Have to agree, and this is a very important conversation. The nanny reveals the child of his ability. It is necessary to offer to him and the parents: maybe it’s to try, and maybe it is, watch how he reacts.
At some point I can be as Arina, and sometimes as Mary Poppins.
In some family I with boy run, like a captain or a pirate. And building a nest out of hand, take the child and sit with him all day, because only in my arms, swaying, he calms down, and he held seizures. Sometimes 8 hours, I was so. The child was strong dystonic attacks, I went with him on hand, don’t even remember where he was sitting, I didn’t care, I saw that the child comfortable, and I knew that at my job.
A hospice nurse needs to know many details: how to sanitize to a child who breathes through a tracheostomy, suffocated, to be able to feed through a gastrostomy tube, use the equipment for the ambulance. I have to be prepared for the fact that he dies in my arms.
The first girl I sanitized was hydrocephalus. She was lying in the corner of a tiny room full of residents. I had to learn to sanitize, because I understood – her life depends on how I will do this or that manipulation. On first visits, I went along with the nanny who taught me that.
The most terrible – when in front of you is a sharp deterioration. For example, the baby turned blue. It must quickly pump the Ambu-bag to connect oxygen. And at first I was stressed. There is no such.
Yesterday I was the boy of seventeen who is dying. His condition deteriorated, he morfinova pump, on oxygen, all dehydrated and could die at any moment. I’m sitting next to him, looking for saturation, if necessary give oxygen, I give, and the parents, of course, in the mountain. Mom asks: “So still he can hear us? He understands something?” I believe that even if he does not respond, you still hear. Hears his soul. What to do? How to help in a dire situation, when mom and dad crying?
I told him yesterday I read “Scarlet sails”. It was important for me to hold his hand, to make oxygen, give medications on time and to read this book. Be sure to read to the end to he remembered that grey realized the dream of Assol. And in this reading the parents were able to calm down. And the atmosphere became more relaxed, was not so depressing.
I tell the kids: “Hello, God”
When I come to the children, then mentally say, “Hello, God”, it is easy for me. There is a book “Oscar and the pink lady”, there is a sick boy wrote letters and each start like so: “Hello, God.” The child that I came into this world came not in vain, he came for some reason. I do not ask him why, I just want to be near him.
When a child is born in the family, the parents perceive it differently. They’re telling me, waited for that child as he was born, and someone took a situation and someone is looking for the culprit in the incident. It’s a continuous bare the pain of what happened.
I tell parents that the child came into the world, and why and how is not for us to judge. It is by fate. And I don’t even want to think about why it happened. He came to this experience. I say to them: you understand, you accept, you will be easier.
You just think differently: the child chose your family, knowing that you can handle it. And the experience of his life, he can get you. As you have it.
In one family, when I dared to say, mom has kissed me, and wept. And she seemed relieved. But we are all people. And to some the idea we can go a long time, cannot be rushed. And can and not come. I recently saw an article of Nuty Federmesser that death is like birth. When a person is born, there comes a time when it is not necessary to hurry. Exactly the same must come death. It is not necessary to hurry or, conversely, to run away from it. Very easy to take, as birth.
For me there is no difference: a child is ill since birth, or he was injured, or had cancer. If you ask parents, for them there is a difference. Mother of cancer boy who’s leaving now, tells how it seemed to her that her grief is the greatest. What is stronger can not be. She is the most unhappy. But when she got to the Holy Trinity Church in Khokhlov, where children’s hospice conducts the Liturgy, and when she saw all the other children, she was shocked. She said, “Ira, I saw so many children! I saw that all the mountain. And they have too. And they hurt too. They are heroes and courageous people who live like this.”
Do you want to say goodbye to mom? She didn’t want
The theme of infant death has long been taboo. Parents fear afraid to talk about it. And even hide the diagnosis from the child. We have no right, of course, without permission to tell him about it. But I really want to convey to parents that a lie begets a lie. The child feels that the parents do not agree. For those who are dying, there is a special sensitivity to what surrounds them and what the conversations are.
The child feels very good to their parents. And they fear the word “death.” And they are trying to protect him, build around a child’s fortress. And in fact, is a fortress of alienation. Instead help each other to live this stage, the parent frightens the child their fears.
When you lose a child, parents often ask for the help of hospice, to someone who came and supported. And I was on this individual post spring in the same family. I legs bowed to these parents because they took care of the child, was calm, caring for him, telling him everything that’s going on, and they were together. It was very beautiful. The child was not alone. This way, they even helped the child to leave.
When parents are silent, I can’t help it. I just talk to him and reassure that he was not afraid. I think that death is the continuation of life. That this does not happen – you have lived, and all. There is no separation, there is only meeting. We are not forgiven. I think what you have to say about it.
Two years ago, took a big girl. The rest of the secret of her diagnosis. She isolated her and did not say what was happening to her. Mom fell in her pain, and the daughter was left alone with the disease without support, they had a hard relationship. In the end my mom allowed us to tell the girl the truth. Then the doctor came to the child: “Light, you die. You have a little more time if you want to say goodbye to mom?” She didn’t want. And it’s scary.
I want to catch the children catcher
In the adult hospice is the commandments of mother Teresa. The most important words for me that if you are full of fears, if your head is busy with its own problems, you don’t have to go to work for these children. Because you don’t have time and effort to fall in love. We must forget everything, I go to work, and I’m available to that child. I have time when I can draw, sing, dance, sit hand-in-hand. This watch is valuable because tomorrow it may not be.
I am inspired by the novel of J. D. Salinger’s “the catcher in the rye”. I am very in tune with the dream of the protagonist. It represents a field of rye in which children run, and from the edge of the abyss. And he wants to catch these kids that they do not fall.
I see my mission that way. To be near the abyss, in silence, or speaking, to be in sorrow and joy. The abyss is their fears, pain, loneliness, misunderstood. To help the child to come true.
If we met by fate, to help him to be and to live in this world in the best way as long as it’s released.
I think it’s important to share everything that is happening with children and families. And in this I find happiness. I hit that place and do the job that you want to do. And from whom receive strength and inspiration. Despite the fact that children die more often. I feel glad that they left under the care of our hospice, they were not alone.
I’m not tired from work. I have another item: someone has to go in there. The child lies in pain, the tubes, the drugs, and someone needs to be there. Because it is necessary. I want to be near them.
I have my own position about life and death. It helps me, I live in perfect harmony. Life is a continued death, death is the continuation of life. We come into this world as someone to live the experience of this period what it is. And the important thing is not how long you live, 5 years or 8. This child lived to 5 years, can make your experience much more than the man who lived longer. They say a wise man who has lived 90 years on the tombstone was written: “I have lived 8 years of my life.”
A typical question of others: “How can you? There in the gap, the children are unhappy, they die. There is so much pain!” I don’t feel this grief. I feel happiness. Working here, I see brighter colors of life. I find it easier to accept what was happening, it became easier to relate to those situations when it seems that there is no solution. That’s a heavy load and would not roll. Nothing of the sort. There are lots of options to decide. Telling me these children. Its a small example, but for me it is very big. These children teach me a lot. They teach me patience and joy, forcing me to look at my problems very differently. It seems to us that we are unhappy and we have a lot of problems, but everything is relative.
