ik mis mijn vrouw, ze heeft MD

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3 dagen Nijmegen - NECC opname

Geplaatst op 30-03-2013 door Ben Siebers
Categorieën: Opname NECC Nijmegen

In november 2012 had ik weer telefonisch contact met Prof. Dr. van Engelen om wat problemen te bespreken. Na dit gesprek stelde Dr. van Engelen voor om Ineke 3 dagen op te nemen in Nijmegen, in het NECC, het Neuromusculair Expertise en Consultatie Centrum.
Ineke ging hiermee akkoord en begin maart werd ze opgenomen. Ze kreeg daar onderzoeken van de longarts, neuroloog, fysio, logopedie, observatie door verpleegkundige.
De 1e dag, maandag, begon, na een intake gesprek, met een longonderzoek waarna een consult met de longarts. Hieruit bleek al dat er veel te weinig zuurstof in het bloed zat en er werd een extra onderzoek ingepland, een inspanningstest. Na alle onderzoeken kregen we op woensdag om 12:30 uur de uitslag van de drie dagen te horen in een eindgesprek waarbij de artsen aanwezig waren en een coördinator / supervisor. Dit team had voor het gesprek een uur overleg gehad over alle uitslagen.
De supervisor viel gelijk met de deur in huis, Mevrouw, het gaat niet goed met u, als u zo doorgaat geniet u niet erg lang meer van uw kleinkinderen (dit had Ineke steeds aangegeven in gesprekken), BOEM !!!! dat kwam binnen, en dat terwijl wij niet hadden verwacht dat er echt iets uit deze drie dagen zou komen, alleen de hoop hadden dat er misschien iets gedaan zou kunnen worden aan haar energie level.
Haar longen functioneren niet goed, haar hart geeft problemen en het zuurstof tekort is een probleem. Dan hebben we het nog niet over haar gewichtsverlies, kracht afname etc.

Maar zo'n schrik moment is misschien wel de enige manier om iemand met MD er van te overtuigen dat er echt iets aan de hand is, dat er echt iets moet veranderen.

Er wordt nu van alles in gang gezet om haar te helpen en te begeleiden om vanaf nu WEL de dingen te doen die ze moet doen maar tot nu toe steeds weer achterwege liet onder het mom van, "ach het gaat toch niet slecht".
Bagatelliseren van de problemen, het is een bekend verschijnsel.

Wat ben ik blij dat Dr. van Engelen deze opname heeft voorgesteld.

Ze moet nu weer terug naar Prof. Smeets, de cardioloog, ze wordt een aantal dagen opgenomen in een beademings centrum om haar te helpen het cpap apparaat WEL te gebruiken. Ze krijgt een coach toegewezen van de stichting MEE die haar moet gaan begeleiden en haar steeds weer dat duwtje in de rug te geven om de juiste dingen te doen.

Kan ik dat dan niet zul je nu denken ? Nee ....................
Ik heb dat steeds geprobeerd, maar tegenover mij, de partner, is het onderkennen van haar problemen niet aan de orde, het gaat allemaal goed, ik heb het uiteraard continue geprobeerd, praten, stimuleren, zelfs boos worden (soms) het helpt allemaal niet. Alleen maar vreselijk frustrerend, je voelt je steeds meer op een eilandje staan in je eentje.
Nee, ik kan het niet..............meer

Ik ben dus erg blij dat we nu begeleiding en hulp van buiten af krijgen en hoop dat er nu iets gaat veranderen, de tijd zal het leren.

En uiteraard zullen wij haar in alles helpen, steunen en van haar blijven houden :-)


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