With diagnosis he moves in with you and will not leave you again so quickly. You will be told: It is ALS, lung cancer, MSA or another pestilence that you can hardly influence. So there he is, sitting there with his eyes on you, while you’re thinking “how do I tell I to my family, friends or employer?
One does not know how to handle it. It pulls the ground from under your feet. And with children, especially when they are small, you have additional existential worries.
Many shy away from bringing children on board (regardless of their age). You want to protect them . Children, however, have fine antennae and perceive the changed situation particularly intensively. But they often do not dare to talk about it. Especially when they “feel” that adults do not deal with it openly! Children then often relate this to themselves and can get feelings of guilt.
Therefore children also have the right to information and are much stronger and more resilient than adults think. In an open and honest conversation with the whole family
-clarified possible misunderstandings,
-strengthened the trust among each other and
-the new life situation can be mastered together
Sometimes you are at a loss for words, but that is not bad. Children cope better with it later than you think and do not have the feeling of being cheated. You can get help here, for example.
www.traube-Koeln.de . There are similar organisations in other cities.
In my work at Intensiv I have always been a supporter of children visiting their grandmother/grandfather/mother or dad, also in the interest of the children.
Of course not in the peak phase of sepsis, when grandma has 35 litres of water too much on board!
I have made the experience, when children are well prepared and came to intensive care, they had rather factual questions. What is the tube for, what is the patch ect?
Even if relatives die, I think one should give the children the opportunity to say goodbye. When my grandfather died, I was told “Remember my grandfather as you knew him”, but at the same time they talked about what my grandfather looked like.
If adults need a degree, why not let the children?
http://www.medizin-fuer-kids.de/bibliothek/nachrichten/schmerzen.html
However, there are also many children who take over the care of mum or dad. Children should stay children, they should be happy when they feel like it and cry when they are sad. A friendly ex-colleague (she works at Traube köln, among others) told me how she works with children – this is not witchcraft, but they give the children space for their anger, fear, happiness, etc.
https://www.pausentaste.de/darum-gehts/
The colleague pleads for an accompaniment already during her lifetime also for neurological diseases such as ALS, MS, MSA, etc. For adults but also for children of the affected persons.
I think this is a great idea, but unfortunately it can only be realised in 1:1 care. And I don’t have to tell you now about lack of funds.
Your soccer-loving twitterer calls out a #saisonspende = seasonal donation season. The conditions are determined by everyone. Per goal by Jonas Hector, per white-vest game by Timo Horn etc. is donated to a charitable organization.
At Intensiv the black dog is omnipresent at all times and he has also moved in with me. Of course you think about how you want to be cared for and what kind of quality of life you have! I do not want a respiratory situation at home and I do not want resuscitation. And I hope my doctors (should I be in intensive care) will order a morphine perfusor soon enough.
I have also talked about this with my sister – it is not easy and sometimes tears are shed. But it does not burden her and we have reduced her shyness a little bit. She also knows that I wish I could lie under a tree in my effzehtricot and have my sausages grilled.
With the boss I spoke once about it. Yes, yes I know living wills and so on, but I have worked for 30 years in intensive care.