"It's important to know that you're not alone": who supports bereaved families
Families who have lost children after an incurable illness face intense stress and grief, which they often have no one to share with. A long-term support program is being implemented there especially for parents and close children who died under the care of the Dom s Mayak children's hospice. Izvestia tells about how it is arranged and what it is needed for.
"In grief, everyone is unique"
In the case of terminally ill children, not only the patient suffers, but also the whole family, so the psychological support program is an important part of hospice care. In the Lighthouse House, she is designed for 5-10 years, while any family member can seek help: parents, grandparents, brothers and sisters, explains Anna Bubnova, head of the Lighthouse House psychological service.
— The first two years are the most intensive communication, of course, only on the initiative of the family. We have individual meetings with psychologists and group visits as part of the after—death support program," she lists.
Such visits are important so that parents can see that they are not the only ones who have faced the loss of a child, because judging by the familiar environment — friends, relatives — it begins to seem that this tragedy happened only to you, says Alyona Kizino, head of the hospital at Home with a Lighthouse: "In such a situation, it is very important to know, That you're not alone. Everyone is unique in grief, but not in loss itself."
About 150 children die under the care of a children's hospice every year, and about half of these families seek psychological help. Sometimes people come back after a few years because they realize they can't handle their grief.
— People come, for example, after seven years, because at first there was no time and energy for grieving, more children were born, they had to be raised. Then the children grow up, the parents return to the times of illness, and a huge melancholy comes over them," says Alyona Kizino.
"I was very afraid of this moment"
Once a year, the House with a Lighthouse holds a Memorial Day — the children's relatives and hospice staff gather, remember everyone, look at photos, and parents can come from the stage to talk about their child. This year, it was the first such day for Tatiana, an employee of the House with a Lighthouse and the mother of 12-year-old Kirill. They came to the Lighthouse House back in 2015, when the boy was four years old. He had severe damage to the central nervous system and cerebral palsy, and he lived under the care of a children's hospice until the age of 12. In September 2024, Kirill died.
— We knew that Kirusha has an incurable disease. We often discussed with both the hospice doctors and my husband what we would do in this situation. Of course, I was very afraid of this moment," says Tatiana. — But we immediately said that we did not want the child to leave the hospital, but to be at home with us.
As a result, according to her, "Kiryusha decided everything on his own." During the next deterioration, he was at home, and his father, who was going to go to the country, decided to stay because of this. The family had time to say goodbye to their son.
Kirill's attending physician immediately came to their home, who took over all communication with the ambulance and law enforcement agencies (they come without fail in such cases. — Izvestia). The contacts of the funeral agency were also provided to the parents by the children's hospice.
"There were young guys in white gloves who did everything very carefully," Tatiana recalls. — It was valuable to me, because after everything that Kiryusha went through, he deserved everything to be worthy.
"It's like being lifted onto a cloud"
14-year-old Dasha, whose parents also attended Memorial Day for the first time this year, came under the care of the House with a Lighthouse less than a year before her death. Back in 2020, when she was ten years old, the girl was diagnosed with liver cancer. The family has been fighting the disease for more than three years.
— Dasha was an absolutely healthy, very active, very social girl. She loved school, she loved socializing," Svetlana recalls. — During the pandemic, I helped the teacher to teach lessons, as she lacked attention and communication. And then one day Dasha woke up and said, "Mom, my pen hurt so much all night. Can I not go to school?" My child didn't want to go to school.
That's how Dasha ended up with doctors who found a tumor in her liver. The pain in his arm was most likely unrelated to this diagnosis, but it was she who helped detect the disease. The girl underwent two chemotherapies and two surgeries, and the family consulted in leading medical centers in Russia. Due to the fact that she had a rare type of liver cell cancer, she had to be treated according to adult protocols, Svetlana recalls.
For almost four years of illness, Dasha had only four months of remission. The girl went through all the lines of therapy possible for her age and condition. The last of them, although they inhibited the development of the underlying disease, caused severe side effects that prevented the child from living a full life.
Svetlana found out by chance that in the fourth year of treatment, doctors recognized Dasha as needing palliative care. She was sitting at home with her young son when social services started calling her with offers of help for a palliative child. The doctors told the girl's father about this after another consultation, but the family did not understand what palliative care was and did not believe that this could happen to their daughter.
The calls from the social services came as a shock: "We still had a whole course of treatment ahead of us, my child is walking, communicating, and suddenly we get a call asking if we need a special bed for a bedridden."
At the Morozov Hospital and the Dima Rogachev Center, she was advised to contact the Lighthouse House. Svetlana filled out the application on the website herself and still considers it one of the best decisions in life.
— Of course, it was very difficult, but they explained to us that now it's about getting as much time as possible, — Svetlana smiles sadly. — If everything was impossible in the hospital (due to chemically weakened immunity in children with cancer. — Izvestia), but here, on the contrary, everything was possible. And thanks to the Lighthouse House, we've done so much.
The doctors of the children's hospice helped to ease the last months of Dasha's life — they not only picked up painkillers, but also found a replacement for the medicine that made the girl's face swell, which she, who loved beauty and communication, was very afraid of. They were provided with the necessary medical equipment so that they could travel on their own. The House with a Lighthouse gave the family tickets to the Bolshoi Theater, which not only Dasha dreamed of, but also Svetlana herself.
— We have been fighting for several years, constantly doing everything possible, looking for new options, second opinions. It's like you, a little ant in a huge three—liter jar, endlessly fingering your legs, and all you get in response is: "Progression, progression, progression," she says. — And suddenly [in the "House with a Lighthouse"] you were taken on a soft cloud and lifted up from this jar. We felt such support, and I was shocked.
Dasha's attending physician was Violetta Gorynya, a palliative care physician who died in a train crash in the Bryansk region in June this year. She stayed with the girl until the very end. Like Kirill, Dasha was dying at home — Violetta came to the family home, helped the girl say goodbye to her family before her death, and then go through all the organizational aspects.
— We immediately got a call from the House with a Lighthouse and offered the help of a funeral agency, for which we are very grateful, — says Svetlana. "My little girl was buried like a princess.
"There was a whole intensive care unit in the apartment"
Irina lost her son Nikita a year ago, when he suffered a severe childhood stroke at the age of three weeks. The doctors offered to keep the child, who would never even walk, but Irina flatly refused: "My task was to make sure that he lived a happy life." Later, she gave birth to another son, and Nikita lived a full life with them for 14 years — the family even went on vacation to Egypt.
During the pandemic, the boy was admitted to the intensive care unit — Irina spent several months in the hospital with him. The Lighthouse House helped them return home. On the doctor's advice, she filled out an application, and the hospice provided everything necessary for Nikita to be able to live at home, and then supported the family for more than two more years — until Nikita's death.
"I had a whole intensive care unit in my apartment, and they brought it all," Irina recalls now. — When Nikita was gone, we loaded a whole "Gazelle" of all kinds of equipment.
The hospice also helped with social respite. When the boy got worse, the family hired a 24-hour babysitter. And then, together with this nanny, Nikita was admitted to the hospital "At Home with a lighthouse" for two weeks so that his parents could go on vacation.
Emotional burnout is one of the most common problems faced by parents of seriously ill children, explains Anna Bubnova. Therefore, the children's hospice has special programs aimed at ensuring that they can get a break — for example, the opportunity to live with their child in a hospital for a while, where all household worries will be removed from them. Or leave the child under the supervision of specialists so that the parents can be with each other.
Svetlana, Dasha's mother, remembers their stay in the hospital as a "recharge", which gave her the strength to go all the way with dignity and manage to do the most for the child before his death.
Irina says that she refused to communicate with other parents who lost their children on her own: she seemed to have already learned how to cope with pain, but she was afraid that meeting the same mothers would "break down." However, she continues to communicate with the "House with a lighthouse".
— For example, we made a boat for 40 days. There's a fence there where there are boats dedicated to dead children. We hung Nikita's boat there," she says. — It seems that the child is no longer there, but for us there are still some events all the time.
"It's important for any parent that someone remembers their child."
If Dasha spent very little time registered at a children's hospice, Kirill and his parents communicated with the staff for several years. Everyone who knew him came to both the funeral and the wake.
— It was very valuable. It is important for any parent that someone besides him remembers about his child, says Tatiana. — But it seems to me that it was also important to the nannies, for example, in their own way, because Kirill had his own relationships with each of them.
Tatiana was offered to contact the children's hospice at any time when she wanted to talk: "No one forced themselves, but I always knew that I had someone to call."
After saying goodbye to Dasha, Svetlana and her husband were also offered psychological help, but they have not yet used it — Svetlana was simultaneously working, receiving additional education and raising her youngest son. To find time for regular sessions with a psychologist, you would have to give up something. But since the support program is long-term, she does not exclude that she will seek support after completing her studies.
But the whole family participated in a country event held for such families by the House with a Lighthouse this spring. This made it possible not only to be together, but also to communicate with other parents, Svetlana recalls. Since Dasha had been in the hospice hospital only once during her illness, they had few opportunities to get to know families experiencing a similar loss.
— In such grief, it is very important that there is a person who has been through it, — says Anna Bubnova. — Because when a child dies, we find ourselves in a conditional "ice cave": relatives and friends are afraid to talk a lot, so as not to reopen the wound.
The field trips, during which support groups take place, consist of two stages — autumn and spring. If the first one is aimed precisely at helping loved ones find some kind of support, to find support in the face of other families who have gone through this, then in spring psychologists most often see people who have already found some kind of support for themselves and have begun to overcome the crisis, says Anna Bubnova: "Often a community is formed on such trips. parents, they start communicating outside of our meetings."
Svetlana met some of those she met at field events on Memorial Day.: "I already saw familiar faces there. And the stories that people were telling from the stage sounded completely different."
It is important to remember not only your child, but everyone, Tatiana is sure.
—Because all our children deserve to be remembered," she says. — And if you do it together, it's very supportive.
Переведено сервисом «Яндекс Переводчик»
