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Sometimes it is an expression of the highest love to let a child die without causing him additional suffering, say the employees of the children’s hospice.
“Children die much more often than people think,” says piel. dipl. Dorota Zygadło from Krakow Hospice for Children. Fr. Józef Tischner. For 30 years she has been dealing with terminally ill children. – Neurodegenerative diseases, perinatal injuries, inoperable heart defects, storage diseases. This is what children get to us – he lists.
With its own couch
Inpatient hospices resemble a hospital. Home hospice is about taking children away from the hospital. – Home is the right place for terminally ill children – emphasizes Dorota Zygadło.
– I realized this when I stood by the bed of a dying child at home for the first time. Before that, I worked in oncology for several years.
What’s the difference? – In the house are the closest ones, toys, own couch, view outside the window.
However, it is not always possible to care for the sick at home. Often the only option is inpatient hospices. In those where the door is open, at least there can always be someone from the family. – But if it is possible, it is better for the sick person to stay at home – says Dorota Zygadło. – There, death has the dimension it should have.
I’m not a masochist
The help from the home hospice consists in visits of nurses, psychologists, doctors and rehabilitators. Depending on the needs of the families, they come once or several times a month. They enter the daily life of the family and become almost its members. – We clean, wash, cook, make grandma’s name day – says Dorota Zygadło. – Families share with us their troubles, marital fights, stories about rejection by neighbors and friends.
– Some people wring their hands when they hear where I work. They say I’m a masochist – admits Anna Zborowska, a psychologist from Krakow Hospice for Children. Fr. Józef Tischner. – That’s bullshit! We don’t just deal with death. We are primarily concerned with life.
Those who work with a family for many years are also in mourning after the death of their child. – I remember all my patients, sometimes I go to the cemetery for them – says Dorota Zygadło. – Working in a hospice is not about being a cold professional. Showing emotions is a manifestation of humanity.
A slice to lose
– One of the mothers said that when her child was sick, someone called her all the time. But when it died, the phone also died – says Dorota Zygadło.
When a child dies, his family becomes empty. People don’t know what to do or what to say, so they run away. They convince themselves that this is a special time, only for the family. – And it is easier to bear difficult emotions when someone is nearby. He does not have to say anything, it is enough that he is ready to listen – says Anna Zborowska, a psychologist.
It is even worse when friends say: “Don’t worry” or “Come on, don’t cry anymore.” And the worst: “don’t worry, you’ll have another one.”
– The parents of the deceased child then feel that they do not have the right to experience this death normally – explains Anna Zborowska. Such counselors do not realize that a parent who has lost a child will carry some kind of void within them for the rest of their lives. It is impossible for the next child to patch it up.
It was better not to give birth
Will my child die? – such questions are rare, Dorota Zygadło remembers only one such mother. Most people don’t want to hear the answer. “Parents prefer to lie,” says the nurse.
Eventually, however, the doctor makes a diagnosis and says, “Your child is terminally ill.” How do parents react? – They go through a storm of emotions, distrust, then anger appears, and finally denial. Everyone experiences it in their own way – says Anna Zborowska. – Some women in a moment of crisis think: maybe it would be better if I did not give birth?
It usually takes a long time to come to terms with the fact that a child will die. The worst thing is if someone in your parents gives you false hope. – Anyone who gets even a spark of hope will immediately benefit from it – says Dorota Zygadło. – Then it takes a lot of work to explain to the parents that the death of the child is inevitable. The most important thing is to make them realize that they should live this time together.
A child, not a disease
When a child falls ill, parents are ready to do whatever it takes to save them: they organize treatment, equipment, rehabilitation, and resources. The belief that everything possible is being done is reassuring. – These actions must be constructive – says Anna Zborowska. – It’s not about tormenting a child with rehabilitation, but spending time with him.
The hospice staff familiarize parents with their child’s illness and learn how to look after them. So that instead of focusing on the disease, they can focus on the child. – There is such a family; every year, they go somewhere together on five. This is what it is all about.
The expression of the highest love
For some children, death can come at any moment: temporary respiratory failure or choking is enough. Parents need to be ready for this and decide whether to continue therapy at any cost.
Dorota Zygadło: – It is a success when we manage to convince parents not to use persistent therapy. Sometimes it is an expression of supreme love to let a child die without causing him additional suffering by forcefully extending his life for a day or two. Then we hear that the smile on the child’s lips appeared only after death.
Children do not demonize death
A small child understands death as a lack of mum. Greater – as loss of peers, cycling, computer games. – When informed that they will die, children often react more maturely than their parents. They do not push this thought away, they do not deceive themselves – says Dorota Zygadło.
How do I talk to my children about death? “One thing’s for sure, don’t lie,” says the nurse. Hiding the truth is the worst solution. – Of course, you cannot torment a teenager with talks about death, if he does not want to talk about it – explains Anna Zborowska. – But if he asks, you have to tell the truth.
– I remember two friends of mine lying in the hospital room, both with cancer – says Zygadło. – When one of them died, the other boy, less than three years old, began to ask. But there was no fear in it.
Death scenario
– I do not remember the fear in the eyes of a dying child. I saw him in the eyes of my parents – says Dorota Zygadło. That is why parents need other people next to each other. – They ask: what will it look like, will my son choke? We get such a phone and get into the car. Sometimes we make it, sometimes we don’t. But the very awareness that we are on the way helps parents – she says.
Can you predict when a child will die? Only for tumors. In other cases, it is impossible to predict the course of the disease, to set a plan for which parents could prepare. – In the case of many children, death may come tomorrow or in 20 years – explains Anna Zborowska.
Blue suit
Some children choose who they want to go out with. – One of the mothers said that her son, who always slept with his brother, wanted to sleep with her that night – replies Anna Zborowska. “He said he loved her and then told her to turn around and go to sleep.” In the morning he was dead.
Another boy, 6 years old, has only reacted to his mother for the past week. – You can’t justify it neurologically. That’s what he chose – says the psychologist.
Children sometimes try to help their parents according to their age and abilities. – Usually it is like: “mom don’t cry”, “mom will be fine, it doesn’t hurt me”. But there are also cases of emotional blackmail, says Zygadło. – A teenager torn from his life has to express it somehow. And the emotions of the sick person and his mother overlap. One boy spent the day trying to sleep, and at night, when his mother wanted to rest, he expected her constant attention.
– The family should make full use of this last time, live it together – emphasizes Anna Zborowska. – One boy before his sister’s communion personally chose a blue suit and everyone knew it would be either for communion or for a coffin. Another boy wanted to go to the movies. It may seem trivial, but it was very important to this child.
Life after death
According to Adam M. Cieśla, the founder of the Krakow Hospice for Children. Fr. Józef Tischner, the most important task of the hospice “is to prepare the family in the best possible way for the reality of death that we know nothing about” (Tygodnik Powszechny 28/2015). But the work of the hospice does not end when the child leaves. Then you have to rebuild your life where its most important point was missing.
– I was visiting a family for a few years and the first thing I saw was a mother with a baby in her arms. I can’t get used to the fact that now his hands are empty. What then must she feel? – Dorota Zygadło wonders.
– Well-organized relationships in the family allow you to survive this difficult time. Our goal is, as psychology calls it, to use our own resources – says Anna Zborowska. – If there are other children in the house: it is important that they do not feel spurned or ignored. And parents must have time to rest and be with each other.
– Once one of the mothers, looking through a pile of papers, told me: “I have to look for a job, because when my child dies, I want to have something to do with myself” – adds Dorota Zygadło.
What a psychologist will do
It happens that parents avoid contact with a psychologist after their child’s death. They believe that they should first organize everything for themselves and – most of all – are afraid that the psychologist will recall what has been forgotten, and will “rummage up” what has been displaced. Therefore, usually the first person in the hospice they talk to is the nurse.
How to live a normal life after losing a child? – Many say that the love that a sick child has released in their family allows it – says Anna Zborowska. – After death, a child mentally accompanies his parents, it is difficult for them to organize everything anew. It was the center of their lives and suddenly it was gone. They do not notice that there is also life on the doorstep of the house. Therefore, you have to actually let the baby go.