Hospice manager Ute Nerge describes the most sensitive time at the Sternenbrücke.
The way over the rainbow
When we feel that one of our young guests is losing the strength to live, a nurse will be there around the clock for this family exclusively - day and night. The dying phase can last several days. Now the nurses, the paediatricians and adolescent medicine specialists as well as palliative medics, the grief counsellors and I have to work closely together. Sometimes hourly meetings are required to ensure that pain medication for the young people up to the age of 27 is administered properly. We use pain relief patches or pain relief lollies, suppositories, drops, tablets, and juices. Few of the children have been on an infusion so far. But we are prepared for everything and have all the necessary equipment. To help the child breathe, we give him or her oxygen if he or she wants to or the parents do. We talk to the family a lot. The parents notify relatives and friends, who come to us to accompany the family hand in hand with us and we provide support.
Waiting – holding out – consoling – being there for one another.
We use aromatherapy, which all nurses are trained in. They help the family relax – take deep breaths. Oils in aroma lamps help the families and the sick child calm down and relax in the dying phase. We make sure that the parents and siblings don’t forget to eat and drink in this situation so that they can keep up their strength. The child gets everything he or she wants, and eats and drinks what he or she likes. Usually, the child will be sleepy, unconscious or barely conscious. We put an extra bed right next to that of the child. Many families lie on the bed, holding their child in their arms. They take turns, they wait. The favorite stories of the child are read and music, which the star child loved, is played.
When the child “goes over the rainbow”, we open the window, if the parents want us to, so that the soul can go up to heaven. This is a common ritual. We light a candle by the building entrance as a sign for anyone who comes in to be prepared. If the parents want us to, we leave them alone with their child to give them a chance to say goodbye. And we stay with them if they don’t. Depending on the situation we notify the people who are important to the parents, and may also contact a pastoral worker. Many of the nurses come to be with the parents and to say goodbye.
We are also always there for the siblings and grandparents. We answer questions, hug people, we wait. We might wash the child and dress him or her one last time with the parents. A candle is burning on the table. Quite often, our families have prepared for this moment. The child is given objects of nostalgic significance to take with him or her on the final journey: the ring from the godmother, the jacket knitted by grandma, the dress or trousers from the last holiday. The cap he or she always wore …
A little bronze angel is placed nearby. It will protect the child from now on. Together with one of our grief counselors we go to the Garden of Memory, either carrying the child or with the child in the stroller. Even at night. Other parents who are with us for respite care often accompany the parents, and experience the same situation that they will have to go through at some point. All the candles in the lamps for our star children in the garden are burning. There is a lamp on a butterfly made of sandstone, which we hand to the parents. They put it in a place they have chosen, perhaps next to the lamp of a child that they knew well. The new candle is placed amidst the others. Our grief counsellors are by the family’s side the whole time. When the parents or a sibling light the candle in the lamp, a few loving words are said, and then everyone is speaking the Lord’s Prayer, if the parents agree. Everyone sings the song: “Das wünsch ich sehr, dass immer einer bei Dir wär’, der lacht und spricht: Fürchte Dich nicht.” (I want very much for there always to be someone by your side who laughs and says: don’t be afraid).
Rituals from other faiths can also be performed. We have so far always fulfilled the wishes of the family. Together with the family we now take the child to the Farewell Room and lay it into to the farewell bed. The “starry sky” is shining, and many candles are burning. We quietly listen to the music that the star child listened to. Children’s songs, musicals, rock music. Everything that is a reminder is allowed and has its place here. Everyone who bids farewell can light a candle on our tree of life – in memory of this young short life.
We can look after the child for several days. An air-conditioning system and a “star bed” with cooling function allow us to do that. Memories of good and difficult times fill the infinite emptiness and silence. Pictures and words of remembrance are immortalized in an album, which has its place in our Farewell Room. All of our star children have left their traces there. The time that the parents suddenly have available to them, time that used to be spent caring for their child, helplessly casts them into a void. Arms that used to carry, stroke and console are now empty. They often show and say this to us. A different life has begun for them, a life they don’t want. A life they can barely imagine. In memory of their child we give the parents a silver star that has the name of their child engraved on it. Almost all our orphaned mothers carry it on a chain around their neck close to their heart.
The parents usually talk to the undertaker, with our grief counsellors or me, in the Fireplace Room. All special wishes are received with sensitivity. Quite often, the parents thought about it a long time ago, and have talked to us about it. They know exactly what they want. They also talk to us about their fears, and we take time to talk to them about them. The time until the funeral is almost always spent painting the coffin. The undertaker brings it as soon as the family wants him to, and puts it in our Creative Room. The family, friends, and other parents whom the family knows, and the staff at the Sternenbrücke paint the coffin, if that’s what the parents want. Butterflies, the sun, animals, angels and much more are painted with great love. Once a father said to us: “It is the last home for our child, and a home should be beautiful.” Pictures of the family are attached underneath the lid. One sibling wanted to put a torch inside. The family touches, feels and thinks about this new “home”. Grasping has two senses, namely holding and under-standing. It makes the coffin less scary. The child is talked about a lot. There is a memory associated with each figure. Sometimes a story brings a smile, sometimes tears.
If the parents are still with us on our stone-workshop day, they come with us to the workshop. They sit with us and make a figure for their child, either for the Garden of Memory or they put it into the coffin or on the grave. Here they have time to grieve and to talk to the other parents. They talk to the stone sculptor, whom they often already know from their respite care days. The thoughts and ideas for the memory stone that they worked on with him are now turned into reality. They have familiar people with them here too. All the stones are special “gravestones”. A hockey stick, a donkey, a cuddly toy, a heart, a fire engine … a memory.
When the day comes for the child to be picked up by the undertaker, the parents will have had a long time to say goodbye. Again and again they touch their child, take him or her into their arms one more time, try to understand that what they have been afraid of for so long has now happened. Siblings see and feel for the first time what “dead” means – depending on how old they are, they find it hard to understand. They see their parents in a situation that is alien to them; they feel insecure and fearful or helpless and unable to cope. They need our help as much as their parents do. With little aids we try to show and explain to them, what death means.