Nathalaligne, Rédaction & Interview

« Aidez-moi à ne pas culpabiliser »

Imaginez cinq femmes, entre 40 et 70 ans, toutes porteuses d’une histoire avec la maladie d’Alzheimer. Que leur proche soit un parent, un conjoint ou un frère, ces femmes aimantes et aidantes assument plus ou moins bien des décisions douloureuses mais inévitables. Une fois par mois, dans les locaux de l’antenne de Douai de France Alzheimer Nord, un groupe de parole leur est ouvert pour exprimer des choses qui résonnent pour chacune d’entre elles…

Le groupe de parole est réuni et comme à chaque séance, personne ne peut savoir ce qui s’y jouera… . Deux des personnes présentes sont là pour la première fois. C’est elles qui, aujourd’hui, vont le plus parler, submergées par l’émotion, assaillies par le doute et la révolte.


Les trois autres, dont l’une vient de perdre son conjoint, sont à l’écoute, le regard bienveillant. Le psychologue et animateur de ce temps de parole propose aux deux nouvelles venues de commencer…

C’est une femme bien décidée qui prend la parole et ses premières larmes ne viennent pas interrompre son histoire. C’est l’histoire d’une femme active, avec des enfants encore à charge et des parents éloignés. C’est l’histoire d’une fille qui, prise par son propre quotidien, n’a pas vraiment vu venir les choses. « A-t-elle laissé sa maman s’épuiser ? » ; « Aurait-elle pu faire autrement ? » se demande t-elle aujourd’hui. Dans l’urgence, elle a dû trouver une structure pour son papa, atteint depuis 2007 de la maladie d’Alzheimer.

« Je suis cette épouse qui n’accepte pas… »

« Aidez-moi à ne pas culpabiliser ! », est une de ses attentes, si bien comprise par les autres qui, toutes, font un effort sur elle-même pour mettre à distance cette culpabilité. « J’ai fait ce qu’il fallait faire mais je n’accepte toujours pas… » Après s’être mobilisée pour trouver un cantou, avoir répondu à des questions déstabilisantes – « Votre proche est-il suffisamment valide ? » ; « Vos parents ont-ils les moyens ? » – elle confie aujourd’hui sa fragilité et son souhait de repartir avec des réponses. Mais il faut du temps pour trouver des réponses – « s’il y en a… » – semblent dire les regards plein de compréhension des plus « anciennes ».

« Je suis votre maman ! Je suis cette épouse qui n’accepte pas de voir son mari devenir un autre. Ce n’est pas mon mari que je voie ! Moi aussi je n’accepte pas ! » C’est au tour de l’autre personne ici pour la première fois de prendre la parole. Plus âgée, c’est une épouse qui crie sa révolte, une épouse elle aussi contrainte à un choix cornélien suite à une hospitalisation, comme si chaque histoire était différente mais avec des points de passage communs. « Nous passons toutes, à un moment de notre histoire par cette décision et nous devons assumer cette terrible impression d’avoir mis nos proches dans une consigne… », confie avec amertume mais sans révolte celle dont l’époux est décédé récemment.

Que reste t-il de l’autre ?

Tant de choses sont abordées dans des échanges plus ou moins sereins. « Vous dites que vous allez voir votre maman tous les jours mais vous, vous pouvez le faire ! Moi je suis à des centaines de kilomètres et je travaille. Qu’est-ce que je suis censée faire ? » Dans la voix, c’est de l’impuissance et non de l’agressivité qui s’exprime. C’est aussi quand même le besoin de se justifier aux yeux des autres, ce qui pourtant n’est pas nécessaire dans ce groupe de parole.

Au-delà des différences et des histoires si semblables et pourtant toutes uniques, des thèmes reviennent comme une constante : la culpabilité bien sûr, le deuil, l’altérité. Qu’est-ce qui reste de l’autre quand l’autre n’est plus là ? Qu’est-ce qu’être un enfant ou un conjoint quand la maladie s’interpose dans la relation ? Que devient le couple ou la relation filiale quand tout s’inverse et que d’épouse ou de fille, on devient mère ou étrangère ? « Ma mère ne m’a jamais vraiment donné de preuve d’amour. C’était une génération comme ça. A présent, elle me touche, me dit que je suis belle. Elle me reconnaît mais ne sait plus qui je suis. Le sourire est là quand j’arrive et puis elle m’appelle d’un nom que je ne connais pas… »

« Je ne peux pas et ne veux pas l’entendre… »

Entre les « il ne faut jamais renoncer, se battre jour après jour, stimuler ce qui marche encore dans la tête », les « mon frère a 55 ans, je préfère ne pas me poser trop de questions » et les « il y a deux mois encore, j’avais un mari, maintenant, j’ai un homme cassé par les médicaments en face de moi »… il est clair que l’avancée dans la maladie change le regard de l’aidant et ce qu’il est prêt, ou pas, à accepter. « Maman est dans son monde et j’accepte de jouer le jeu. J’embrasse ses peluches quand elle me le demande, je les lave avec elle et au moins une chose nous relie pendant cette toilette. »

En évoquant naturellement et sans volonté aucune de choquer l’état avancé de sa maman dans la maladie, cette même personne provoque une réaction vive d’une des participantes : « C’est insupportable ce que vous dites, je ne peux pas et je ne veux pas l’entendre… ». Elle se lève et se dirige vers la porte, sous le regard ému et désolé des autres. Le psychologue ne la retient pas car chacun est libre dans ce groupe et à même de savoir ce qu’il est prêt ou pas à entendre et, surtout, à quel moment. Une bénévole de France Alzheimer l’accompagne pour échanger probablement et l’inviter à revenir dès qu’elle s’en sentira capable.

Aider un proche atteint de la maladie d’Alzheimer est un vrai parcours du combattant mais c’est aussi un parcours initiatique dans la connaissance de soi. Beaucoup de projections se vivent à cohabiter avec la maladie. C’est perturbant, très perturbant et le groupe de paroles est un lieu où exprimer désarroi et colère mais aussi un lieu pour se préparer à avancer dans l’acceptation. Pour se préserver et se défaire du poids de la culpabilité.

• FRANCE ALZHEIMER : 0 811 112 112

Article rédigé par Nathalie Cuvelier pour Aidant attitude

Categories: Récit

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