Mitten in Mannheim, nur einen Steinwurf von dem imposanten Barockschloss entfernt, liegt das Kinderhospiz Sterntaler. Hier kümmern sich Menschen um das Leben schwerstkranker Kinder und Jugendlicher. Hier pulsiert die Großstadt.Der Weg zum Büro des Sterntaler e.V. führt vorbei am Schaufenster des Sterntalerlädchens und dem Eingang der Sterntaler Kinderbetreuung. Hier arbeitet Sabine Volkert, eine junge, offene, engagierte Frau – zuständig für Presse- und Öffentlichkeitsarbeit. Sie setzt sich an einen ovalen Holztisch in dem hellen, freundlichen Besprechungsraum und beginnt zu erzählen. Über die Arbeit des Hospizes und die Akzeptanz der Arbeit in der Gesellschaft. Rund 30 Familien mit erkrankten Kindern werden derzeit vom Mannheimer Kinderhospiz zu Hause gepflegt und versorgt. Hinzugekommen ist die Möglichkeit der stationären Aufnahme in Dudenhofen. Dort öffnete das Hospiz Sterntaler am 19. Oktober 2009 seine Türen – das erste Kinderhospiz in Rheinland-Pfalz. „Momentan können wir dort drei Kinder, ihre Eltern und Geschwister aufnehmen“ freut sich Sabine Volkert. Es war ein langer Weg bis dorthin. Häusliche Krankenpflege bietet das Kinderhospiz Sterntaler e.V. schon seit 2004 an; der Schritt zur stationären Aufnahme war von Beginn an geplant. „Wenn erst mal die Scheune umgebaut ist, haben wir bis zu zwölf stationäre Plätze.“
Im Hospiz Sterntaler wird versucht, die Tage der Kinder mit viel Leben zu füllen. Sie bunt und schön zu machen. Für alle. Man kann spüren, dass es Frau Volkert wichtig ist, wenn sie sagt, dass „Dudenhofen ein Ort ist zum Lachen und zum Weinen, beides hat seinen Raum und seine Zeit. Viele Leute haben erst einmal Scheu davor zu kommen. Aber nachdem sie diesen Ort besucht haben, ändert sich irgendetwas. „Ich glaube sie spüren die sonnige Stimmung – es ist hell, ruhig und heiter.“ Die „Gäste“ eines Hospizes sprechen von einer Art Zuhause, nicht von einem Krankenhaus und man ahnt, wie viel Wärme es dafür braucht, wie viel Einfühlungsvermögen, Menschenliebe und Demut aller Menschen, die dort arbeiten. „Die Pflegeschwestern leisten eine bewundernswerte Arbeit. Die emotionale Belastung ist groß, aber die Arbeit ist auch sehr erfüllend“, sagt Sabine Volkert. Dem kann die Intensivkrankenschwester Simone B. zustimmen: „Wenn ich das Vertrauen der Eltern und des Kindes habe, wenn ich merke, dass ich die Familie in dieser schweren Zeit hilfreich begleiten kann, dann kriege ich eine Menge zurück, das gibt mir sehr viel.“
Ein Kind bedeutet Zukunft
Wie wichtig Öffentlichkeitsarbeit ist, weiß Susanne Kolbe, die als Familientherapeutin auch viele Trauernde begleitet: „Die Hospiz-Idee muss weiter verbreitet werden. Herausgelöst aus Familie und Alltag sind der Tod und das Sterben zu tabuisierten Erfahrungen unserer Gesellschaft geworden. Aber in einem Hospiz geschieht das Sterben nicht im Verborgenen“. Die Beschäftigung mit dem Thema Tod ist meist eine belastende Konfrontation mit der eigenen Endlichkeit. Besonders groß sind die Berührungsängste, wenn es dabei um Kinder geht. Ein Kind bedeutet Zukunft, seine Perspektive heißt Entfaltung, Entwicklung und Wachstum. Da ist kein Platz für den Tod. „Der Tod eines Kindes ist eine schwere Hypothek für alle Mitglieder einer Familie“, schreibt Gertrud Ennulat in ihrem Buch „Kinder trauern anders: Wie wir sie einfühlsam und richtig begleiten“. In der Sorge um das schwer kranke Kind geraten die Eltern aus ihrem Gleichgewicht. In der Familie verändert sich die Balance des bisherigen Lebens. Deswegen ist es den Sterntalern auch ein großes Anliegen, die Geschwister zu unterstützen und zu begleiten. „Wir unternehmen ganz verschiedene Sachen. Manchmal steht einfach nur Spaß haben auf dem Programm. An anderen Tagen gehen wir beispielsweise klettern oder veranstalten Märchennachmittage. Hier steht dann eher der therapeutische Aspekt im Vordergrund. Ganz wichtig ist uns dabei, dass jede Unternehmung von unseren Pädagogen begleitet wird.“
Die finanzielle Situation der Kinderhospize ist schwierig. Seit 1997 regelt § 39a des fünften Sozialgesetzbuchs die Finanzierung stationärer Hospize durch die Krankenkassen. Mit einer Gesetzesänderung im Dezember 2001 wurde auch die Unterstützung ambulanter Hospiz-Dienste geregelt. „Die Kassen zahlen nur 60% der Pflegekosten für das Kind. Für die Finanzierung aller weiteren Kosten die entstehen, sind die Hospize auf Spenden angewiesen. „Zuschüsse vom Bund gibt es nicht“, bedauert Frau Volkert. Deswegen freuen sich die Sterntaler sehr über Botschafter, wie den in Mannheim geborenen Comedian Bülent Ceylan und die vielen einzelnen Spender. „Auch mit einer Mitgliedschaft kann man uns sehr helfen.“
Ein paar Stunden Auszeit
“Erwachsenenhospize” stehen ihren Gästen explizit nur für die finale, letzte Lebensphase offen. Kinder-Hospiz-Arbeit dagegen beginnt schon mit der Erkrankung und nicht erst, wenn der Tod nah ist. Sie steht als ein unterstützendes Angebot für die gesamte Familie Lebens begrenzend erkrankter Kinder, Jugendlicher und auch junger Erwachsener zur Verfügung. „Zumeist sind die Eltern eines erkrankten Kindes durch die permanente Verfügbarkeit physisch und psychisch vollkommen erschöpft. Manchmal bedarf es da einfach nur ganz dringend ein paar Stunden Auszeit“, ist die Erfahrung von Schwester Simone. Um diese Arbeit leisten zu können, ist das Sterntaler Kinderhospiz auch auf Familienbegleiter angewiesen. „Familienbegleiter arbeiten ehrenamtlich und werden von uns intern kostenfrei ausgebildet. Sie leisten wichtige, häufig ganz praktische Arbeit in den Familien. Sie gehen z.B. einkaufen oder übernehmen Fahrdienste, sind Begleiter im Alltag und stehen für Gespräche über Sorgen und Ängste zur Verfügung – besonders in schwierigen Phasen“.
Insgesamt gibt es in Deutschland zehn Hospize für Kinder, die diese kompetente, ganzheitliche Unterstützung leisten. Das erste dieser Art wurde 1998 in Olpe eröffnet. Hinzu kommen etwa 25 ambulante Dienste.
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