现年66岁的“无线绿叶王”吴博君,在2018年时被医生诊断罹患“渐冻症”,一日生活皆须仰赖患先天性小儿麻痹症的妻子照顾,生活处处充满不便,他的妻子更坦言:“如果没有外佣帮忙照顾的话,我会很想抱着(丈夫)一起死。”
“渐冻人症”全称为肌萎缩性脊髓侧索硬化症(ALS),患病者会在两三年内逐渐出现神经肌肉萎缩,手指、四肢逐渐变得无力,吞咽食物也变得异常困难等等,终生须依靠轮椅或是仅能待在床上。
原本一直是由吴博君照料妻子,生活无虑,自从吴博君确诊渐冻人症后,照顾者与被照顾者的身分就此调换。患有小儿麻痹症的吴太太,更是将工作辞去,每日用仅剩少许力气的半边身体,搀扶丈夫如厕、饮食。即便是之后聘请了外佣帮忙,但额外的开销以及枕边人日渐虚弱的身体,也让吴太太多次情绪崩溃。
据港媒报导,在昨(20日)时,吴太太出席香港残疾人士照顾者对施政报告的意见调查发布会,会上她表示“当你看到身边人身体越来越差,你又没能力改变,每个月要补贴几万元,不敢想什么时候会完全没有钱,曾经崩溃到把头撞墙。”一字一句皆是自身过往遭遇的呕心呐喊,言语充斥着恳请政府多加重视对残疾家庭困苦生活救助的期盼。
出处:台湾中国时报
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