‘Mijn buurman mag zelf zijn beleg kiezen, en ik niet. Ben ik dan geen mens!?’, briest Maurice. ‘Men zegt dat hier een duister persoon woont…’, fluistert Monica. ‘Er zijn er hier die niet eerlijk zijn,’ verzucht Georgette. Het zijn slechts enkele van de stemmen die je hoort in een zorgeenheid voor personen met dementie.
Vandaag menen we steeds beter te kunnen meten en weten hoe de ‘wereld van dementie’ in elkaar zit. Dit onderzoek nodigt de lezer uit net die kennis terzijde te leggen om in alle openheid een gesloten afdeling voor ouderen met dementie binnen te stappen. Daar is het voor de bewoners lang niet altijd duidelijk hoe herinneren werkt, wat zorg betekent of wie er eigenlijk ziek is.
Dementie is een groot probleem: ‘ik hoop maar dat ik het ook niet krijg’.
De Wereldgezondheidsorganisatie beschouwt dementie vandaag als een topprioriteit. De zorgzwaarte die dementie met zich meebrengt dreigt de welvaartsstaat te verzwakken. Kwalificaties als ‘tsunami’ en ‘epidemie’ verwoorden de angst voor het grensoverschrijdend gedrag, de aftakeling en afhankelijkheid van een steeds groter deel van onze bevolking. Politiek en wetenschap richten zich dan ook op kwalitatieve en betaalbare zorg.
Voor het modern individu is het echter moeilijk om voor ‘dementen’ te zorgen: dementen verliezen hun verstand en dus zichzelf, ze kunnen ons niets meer geven, het zijn on-mensen. Sinds de jaren ’90 stelt de persoonsgerichte benadering dan ook dat we hen eerst en vooral anders moeten leren zien: als mensen, met een ‘rotziekte’. Vandaag spreken we niet meer over ‘dementen’ maar gebruiken we het politiek correcte ‘personen met dementie’. Door hun relaties met ons behouden ze hun menselijkheid.
Wat als dementie niet het probleem is?
Het lijkt inhumaan om deze filosofie in twijfel te trekken of om te zeggen dat ‘dementie’ niet het probleem is. Toch is dit de houding die ik als antropologe moest aannemen om de polsslag van deze woonomgeving te voelen. Deze afdeling is namelijk geen optelsom van personen met een beperking, maar een web van relaties waarin mensen tot de laatste zucht proberen een enigszins comfortabel, eigen leven te leiden.
Persoonsgerichte zorg werkt vandaag actief rond herinneringen en verleden identiteiten. Door deze letterlijk te her-inneren, stelt men, kan de persoon met dementie even terug zichzelf zijn. Ik merk echter dat zeker niet alle herinneringen of identiteiten in elke situatie even bruikbaar zijn, ook niet voor personen met dementie.
Hier zitten schooljuffrouwen, huisvrouwen en voormannen dagenlang samen aan een tafel. Wanneer de huisvrouw de schooljuffrouw verwijt dat ze zich meer permitteert omwille van haar stand, dan is die identiteit voor haar niet zalvend of helend meer, maar gevaarlijk en anti-sociaal. Frida, de schooljuffrouw, maakt dan ook de keuze om zich niet met die identiteit te vereenzelvigen en om haar herinneringen te bewaren voor veilige gesprekken, ver weg van de tafel van huisvrouwen.
Op dezelfde manier werkt professionele zorgverlening met verleden interesses en capaciteiten. Van Monica weet men dat ze intelligent is. De zorgverlening complimenteert haar met die eigenschap en bovendien helpt die kennis hen om ‘demente’ van ‘gezonde’ momenten te onderscheiden. Voor Monica echter is haar intelligentie altijd een grote bron van frustratie geweest. Monica mocht niet studeren en als moeder van vijf belandde ze thuis bij de kinderen waar ze eenzaam werd, verveeld en verbitterd. Wanneer ik haar een krant aanreik, omdat ook ik geloof dat ze intelligent is, wordt ze hier dan ook helemaal niet gelukkiger van maar kregelig en gekwetst: ‘kom, doe dat nu maar weg!’.
De persoonsgerichte benadering houdt vast aan deze verleden eigenschappen. Voor de omgeving is herkenbaarheid een teken van gezondheid. Zowel de dementie als de opname in een woonzorgcentrum betekenen echter een voortdurende verandering die aanpassingen vraagt. Ook voor personen met dementie is teruggaan geen mogelijkheid. ‘We moeten, we moeten voort’, zegt Georgette.
‘Clara zegt dat ik haar zuster ben, hé Clara, ik ben uw zuster hé?!’
Geïndividualiseerde zorg is vandaag de goede praktijk in de zorgverlening: de eigenheid en autonomie van de persoon moeten centraal staan.
Ondertussen zitten Clara en Liliane lange dagen aan dezelfde tafel. Liliane bezit nog bepaalde sociale vaardigheden en legt die als een schommelstoel onder Clara, die dat besef eerder is verloren maar daar niet bijzonder onder lijdt. Liliane zorgt voor Clara: ze vraagt haar te blijven zitten zodat men niet kwaad op haar zou worden, ze lacht met haar kwajongensstreken, ze wijst haar de weg naar het toilet. Clara zorgt voor Liliane, die eenzaam is, en nors, door haar toe te laten haar zuster te zijn, en soms haar moeder. Deze processen, deze zelfzorg en samenzorg, zijn vitaal voor Clara en Liliane, maar verrassen dementie-experten die het ‘individu’ als zorgeenheid nemen waardoor samenleven een voetnoot wordt.
Mannen en vrouwen, tussen 50 en 95, met uiteenlopende achtergrond en ziektebeeld delen wel en wee. Natuurlijk is dat samenleven moeilijk. Maurice wil dan ook graag naar een andere afdeling: ‘er zijn hier veel mensen die sukkelen’, zegt hij. En inderdaad, er zijn veel mensen die sukkelen in deze gesloten afdeling, de Vergeet-me-Nietjes. Toch is het voor de bewoners zeker niet altijd duidelijk wat het probleem is.
Zo is het voor Erna duidelijk dat Frida het moeilijk heeft omdat ze haar moeder is verloren en voelt Monica dat ze anders is omdat zij aan een ‘dikke tafel’ (haar rolstoeltafeltje, alleen) zit en de anderen aan een ‘slanke tafel’ (de tafel van schooljuffrouwen en huisvrouwen).
‘Ja maar, meiske, ik was hier ook maar halsoverkop’.
Met dit etnografisch onderzoek wil ik de onvoorspelbaarheid en creativiteit van het samenleven, die anders in de marge van geprofessionaliseerde zorgethiek verdwijnt, een stem geven. Afgestemd op wat van waarde is voor de bewoners, ervaar ik het voortleven in een gesloten afdeling als een uitermate relationeel proces in een omgeving waarin men vaak het gevoel heeft ‘hier ook maar halsoverkop’ te zijn. Wanneer we realistische uitspraken willen doen over personen met dementie is het zinvol om hen zelf te laten bepalen wat het probleem is.
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