Snowdrop

Ivan comes to the Yekaterinburg hospice not to die and not live, and at least live with dignity for several weeks

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I am sitting opposite a large man in the first Yekaterinburg hospice. He was fifty years old, fifteen of them he did not leave the house and did not wash for seven years. In the text, he asks to call him Ivan, because he is shy of his present name and position.

Ivan's position is unenviable - outwardly large and strong, he can very little. Six on the beds with headphones in the ears, which in the morning prudently stuck a nurse into the ears. It’s hard to move a small computer mouse with large fingers and it is embarrassing to respond to mobile calls. The phone lies on the bed, and every time he calls, Ivan is nervous. Having gathered all his strength, concentrating to the limit, he presses the “reply” button and turns on the speakerphone. Putting his neck to the bed, he speaks loudly to be heard. They usually call a daughter or grandson. They also shout that words reach from bed to Ivan.

In the Yekaterinburg hospice, Ivan is the second time. He is a special patient. Unlike many, he is not here then to survive without pain of the last days. The last days he will have many more, and how much exactly it is unknown. Ivan has a rare genetic disease in which muscles gradually become thinner. Slowly, year after year, a person loses the ability to move: walk, do something with his hands. Each new day takes a little life from Ivan. And he does not know whether it is good or bad to die a little bit .

He does not know whether it is good or bad to die a little

Inquiring Ivan about the past, I feel like a sadist. A completely immobilized man tells how he rode a bicycle and how much he would give if he could learn again. As at the age of 20 he traded at the Kvass station. He sold a huge barrel in four hours - this is a record speed, so no one could, only Ivan. How married, how a daughter was born. And as one day, when the first abundant snow fell, he could not reach the garage.

Corridor of the second floor photo: Fedor TELKOV for TD

“It was the day when I unexpectedly became a“ snowdrop ”. You know, the so -called pensioners, whose cars are standing all winter, and only in the spring they start them. So I could not clean the road to the garage. And he spent the whole winter at home. ”

Then Ivan was already diagnosed. He already knew that he would not be better. But he was not going to take the disease. I did household chores - my hands still moved. He went down on the elevator to the first floor, then quietly on the steps - he went for a walk. And once, as once a “snowdrop”, Ivan became a “stroller”-he simply could no longer get to his feet. He left the house in a stroller once - his wife asked his friends who threesomed him from the stairs. Ivan felt like a burden and decided that he would not ask anyone else. And the donkey at home. Was 2000. At first he yearned. Then he went crazy. And then he resigned himself.

“ Have you ever looked after a disabled person?” - Ivan interrupts the story, carefully looking at me.

- It was business.

- Then let's drink coffee. There is a mug there, wash it. There is a teapot. There is water there. Here is a high glass, with a tube, see? Wash him, please. Will be mine. And in the nightstand in the chocolate box - open.

I pour coffee into a glass, cover with a lid, insert a tube. I sit down on the bed.

-Uh , no, you don’t have to drink me! I myself can. See, pocket on my chest? Insert a glass there.

I insert - the tube is very close at his mouth. He unnaturally extends his neck and captures her lips. "I came up with this SHAM!" - Bubes proudly. We take turns biting the chocolate (he allows him to feed himself), and Ivan talks about what it feels like - not to see the city of 15 years.

Lingerie in laundry photo: Fedor TELKOV for TD

“A couple of times I was taken to the hospital. Well, what have I seen there? Machines flashing houses. Part of the houses, more precisely - I was half -laying. I noticed that the skyscrapers grow more and more - where the sky was, there roofs appeared. I heard that the Yeltsin Center was built with our beautiful. To see ... when I could no longer do anything myself, my wife looked after me. What could she? Feed, put it around the room in a stroller. I could hardly go into a bath in a chair, but I could not turn around there at all. Therefore, he stopped washing - the wife used wet wipes and washed my head in the room. I sometimes remember what it feels like when water flows from the shower on the skin. What a pleasant sensations are. This is for me now, like space . "

A year ago, the wife of Ivan died. He does not want to talk about it. He only tells that when he was left without her, he called the social service - he asked if they could help with a nurse. Ivan is angry, recalling how three women came - to tell that the list of services does not include everything that he wants (only the purchase of products and drugs). But if Ivan really needs it, then paid services are much more extensive. Ivan sent them away and never called again.

A daughter with her husband moved to Ivan. Every night they jumped from his screams - Ivan's muscles at the feet of Ivan brought so hard that he could not endure the pain. He was planted on the bed - the pain subsided. He crawled to the bed to sleep - it all started again. “They walked with me like a zombie. I hated myself for this. And then I found out that the hospice was opening. And he received a direction there. He sent his daughter on vacation for 20 days, left her without himself. "

The hospice was good. There were medicines that prevented Ivan from writhing from pain at night. There were nurses who were not like indifferent women from the social service. There were doctors who did not ask stupid questions. It was not a shame to ask for help - one could be yourself.

A nurse in the procedural office photo: Fedor Telekov for TD

Here Ivan went outside for the first time in 15 years. Summer, +30. It was unbearably pulled to smoke, it was impossible in the building of the hospice. He asked for a cigarette. He dragged on. He was drove around the yard. The sun was warming his cheeks, juicy grass cut his eyes, somewhere in the distance, new skyscrapers loomed ... The sounds of the city laid their ears, Ivan closed his eyes. And when he opened his eyes, nothing disappeared.

Now Ivan is at home. But he hopes that he can come to the hospice yet. He even secretly dreams of working there as a guard: “I can press the mouse and on the alarming button, I probably could also.” This place was not a verdict for Ivan, but by the whole world, in which he is not a “snowdrop”, but a person.

The first Yekaterinburg hospice is a unique one of a kind. Death is not felt in it, but the house is felt. The state allocates funds for basic needs, but they are catastrophically lacking. Not enough money for medicines. And to the organization of the Hospice Otkvynaya Service. The other day they will bring materials and repair the third floor will begin. After the repair, the number of places in the hospice will increase from 30 to 52, and this is already half of the stationary places necessary for the city. But all this was bought not on budget funds, but on donations, on our donations.

For example, in the budget for food, each patient has 67 rubles per day. You can imagine how to feed a dying person 67 rubles. Therefore, we collect funds for this - for food, and for medicines, and for repairs. If you arrange a monthly donation even for a hundred rubles, one of the hospice patients will become easier. He can at least eat normally. Even a small amount can help Ivan and feel alive to many others.