Uneven days

Lyudmila Alexandrovna is 70 years old. Her son Efim is 43. They live together, watch films together, discuss books, monitor ratings in their favorite car racing. Previously, they walked a lot, got out for concerts. Now the biggest adventure for Lyudmila Alexandrovna is a trip to the store. And for Efim - hold out without mom for half an hour

We help Gaordi help

Efim has a backker's muscle dystrophy. A genetic mutation, a rare disease that is not treated - neither in our country, nor in others. It has long been chained to a stroller, and the process of muscle atrophy continues. Unfortunately, doctors do not give forecasts. Yes, they are not waiting. In this family they have long learned how to live here and now, not regretting the past and not making up the future. And there is no doom in this, but there is great wisdom.

Lyudmila Aleksandrovna photo: Valery Zaitsev for TD

Previously, parents who first encountered this diagnosis often turned to Lyudmila Alexandrovna. She advised everyone, answered questions, even for some time she worked as a specialist in socio-legal issues in Gaordi (St. Petersburg Association of Public Associations of Parents of Children with disabilities). Then sites, forums, social projects began to appear, and now Lyudmila Alexandrovna simply tells her story so that other families see not only difficulties, but also opportunities in life.

One whole

“Fima was diagnosed at seven years old. We assumed that something was wrong, he was weak, painful. But then no one could think about a rare genetic disease. Fortunately, we were lucky to be observed with the professor, who diagnosed.

Although we had a complete family and my father helped in everything, we had to become the whole with Fima, I completely devoted my time to taking care of him. When Fima went to school, I quit my job and came at the breaks to transfer it from class to class. At the age of 11, I had to switch to home schooling. Fortunately, our class was very friendly, the guys all lived in our house, helped, came to visit. But after school, a vacuum formed. So that Efim has the opportunity to communicate, bought a computer. When the Internet appeared, he became a salvation: a source of knowledge, and a means of communication, and a window into the world. ”

Efim photo: Valery Zaitsev for TD Efima’s computer table is a place where he spends most of his time. Efim is becoming increasingly difficult to cope with mouse management photos: Valery Zaitsev for TD

Efim's childhood and youth, despite the difficult diagnosis, were happy. Loving parents, big city, long walks in parks. It became really difficult when Efim grew up. The father had a stroke, he could no longer fully help the family, did not drive the car, and did not lift severity.

Last year, Efim's father died. And Lyudmila Alexandrovna realized: you can’t do without outside help. Even by working with Gaordi, she knew that there are saving employees who come to families to help care for the sick, to conduct economy and - most importantly - give parents time. The very respite, without which neither mother nor her son can handle. But the situation with the diagnosis of Efim was complicated by the fact that leaving for him demanded special skills. And general training was not suitable here.

Become your own person

“You see,” Lyudmila Alexandrovna explains, deftly pulling Efima in an armchair and laying his hand on a computer mouse from the right angle, “such patients are very special. Physiologically, everything proceeds in different ways, and psychologically-these are adults, with their habits, with character. A coming person should not only help, he should not harm. In fact, he becomes a member of the family - it happens with us three times a week for six hours! Complete trust and mutual understanding, willingness to study, strength and dexterity are needed. In our case, it must be a man: here physical endurance is required - raise the stroller to the elevator, shift the Efim - and emotional comfort in the procedures. Well, it’s interesting to talk with a person with similar hobbies. ”

Lyudmila Aleksandrovna photo: Valery Zaitsev for TD

Such a person was found for the Alexander himself - a close friend of the family volunteered to help. He went through training in the "respite" and became an official assistant. But if the family does not have such trusted people, the “respite” will select an employee and help him to go through an adaptation - all participants in the process should be as comfortable as possible. In fact, the task is not just to choose an assistant, but to find your own, a person whom the family will accept and who will be easy to work in it.

Life is one

“You will not leave such wards to students or beginners. This will not be a respite already, but solid nerves, ”Lyudmila Alexandrovna laughs. - When our assistant sits with Efim, I can sleep (at night we wake up every hour, and this is very difficult). I can go for a while, for a walk or to the store. But I must be sure that everything is in order at home and my son is fine. Otherwise, the rest will not work. You know, many parents think that programs like “respite” are a way to turn off, forget, at least a little to live some other life. But this is not so. You have one life with your special child, it doesn’t matter how old he is and in what condition he is. Life is one. And with an assistant, you simply share the load without shifting responsibility to him and not trying to run away from something. This is just a vacation, because you need to relax - for the sake of your family and a child who needs your strength and support. ”

Lyudmila Alexandrovna shows the toys of the son of Efim, which they gathered with her father photo: Valery Zaitsev for TD Puzzles that Efim collected. Five years ago, he took one or two months for each. Now he is no longer able to cope with this task photo: Valery Zaitsev for TD

Efim smiles, nods: “When an assistant comes, this does not mean that I do not need my mother. This means that there will be a clock when we can switch to our conversations and things, weakening a little bunch. I am with both hands for help from the side. Mom, for example, would be good to be in the air, walk. For me, communication with someone is also valuable. I mainly communicate on a network with people with similar diagnoses. Of course, we greatly support each other, share experience, but sometimes I just want to chat - to discuss the news or listen to an interesting story. ”

“Children with such diagnoses are usually given a lot of attention. For teenagers and youth, there are also many events: meetings, camps, concerts. And adults - they seem to not exist, ”says Lyudmila Alexandrovna. - Everyone goes into “survival”, in isolation, closes in himself and his family. And for us, “respite” is also communication, socialization, some movement. The days are no longer the same. "

The same days in a small apartment in the sleeping area of ​​St. Petersburg are stretched for many years. An adult woman and her adult son, forever connected by invisible shackles of the diagnosis. Daily overcoming difficulties: turn over-reserve-fed. Products and medicines that have to be ordered at the house - you don’t even run away to the pharmacy in a neighboring house without an assistant. And there are also very difficult tasks, for example, a trip to the doctor. Or moving to the summer to a social cottage in the village of Solnechny.

Efim photo: Valery Zaitsev for TD

For Efim, only a specially equipped taxi is suitable, where you can call in a stroller. Such a car is expensive. A woman, a backpack, a stroller and her passenger. When the family has a special person, elementary actions become a test. And, having taken a few steps, it is very important to stop and take a breath so as not to fall. A feat - a respite - the next feat.

In order for the Plus Division project to help such families in their daily exploits, he also needs help. Funds are needed for training and salary of assistant employees, compensation for transportation costs, as well as for the salary of a project coordinator who has to do literally everything-from planning the work of employees, selecting and evaluating families to examination of the conditions in which wards live, drawing up all types of reporting and personal affairs of people with disabilities. More than 30 families need a “respite daily. A monthly donation is three minutes of your time and any feasible amount. And in return-great gratitude from people who have learned to truly value time.