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https:\/\/health2.mingpao.com\/ftp\/Health2\/20170501\/news\/_01YC001_.jpg\u300a\u8d0f\u5728\u7d42\u9ede\u7dda\u300b;https:\/\/health2.mingpao.com\/ftp\/Health2\/20170501\/news\/_01YC002_.jpg\u300a\u86aa\u5c3e\u300b\u5287\u7167\u2014\u2014\u300a\u86aa\u5c3e\u300b\u8b1b\u8ff0\u4e00\u540d\u5973\u5152\u7167\u9867\u60a3\u6709\u8166\u9000\u5316\u75c7\u7684\u6bcd\u89aa\uff0c\u7576\u4e2d\u6240\u9762\u5c0d\u751f\u96e2\u6b7b\u5225\u3002;<\/inline><\/p>\n","protected":false},"excerpt":{"rendered":"

【明報專訊】編按：今屆香港電影金像獎，惠英紅憑《幸運是我》中飾演腦退化症患者，獲得「最佳女主角」。頒獎台上，她一邊流淚，一邊提及剛離世的母親：「我媽媽有十幾年老人癡呆症，癱在牀上連飯都不懂得吃，這套戲是希望大家包容他們。」<\/p>\n

晚期腦退化症病人的生活情况是怎樣？有什麼方法可以延緩退化，改善病人生活質素？家人又有什麼需要準備？家人之間應該如何討論這個話題？<\/p>\n

腦退化症（又名認知障礙症）是近年全球關注的重要健康議題之一。根據衛生署有關香港主要死亡原因報告顯示，2015年因腦退化症死亡的人數為1145人，佔全港死亡原因2.4%，排第8位。由於腦部受損的範圍擴大，晚期腦退化症人士的身體機能逐步退化，對於環境及身邊事物掌握相對較弱。很多腦退化症人士可能已不懂得行走，未能清楚表達自己的需要和意願，以至個人護理上需要更多協助。<\/p>\n

其中一個常見於晚期腦退化症人士的問題就是進食安排，他們可能容易噎住，或不願張開口進食。言語治療師通常會作出評估，因應情况建議照顧者使用凝固粉或糊餐。不過，當吞嚥能力愈來愈差，即使照顧者成功將食物放入腦退化症人士口中，他亦有可能出現含着食物或不懂得吞嚥的情况。他們對食物需求和意欲減低，甚至連水也不願喝，其營養指標或體重會開始下降，嚴重的更會出現脫水。家人很自然會開始擔心病人捱餓，而其中一個可能面對的決定就是鼻胃管餵飼，俗稱「插喉」餵食。鼻胃管餵飼是一種入侵性的介入治療，雖能解決無法進食的問題，但對腦退化症人士來說卻是折磨。<\/p>\n

無法餵食　不忍插喉續命<\/p>\n

曾經照顧過一名接近90歲的晚期腦退化症長者，她因被食物噎着而導致兩次肺炎，被送往醫院。此後，長者開始轉吃糊餐及流質食物。但隨病情轉差，進一步出現進食困難，開始不懂得、也不願意進食。女兒為長者聘請工作員個別照顧及協助進食，但餵食一碗300毫升分量的食物動輒也要花上一個小時或以上，而且很多時都未能完成預計的分量。人手餵食的過程充滿挑戰，但是家人沒有放棄，更嘗試不同的食物，如布甸、芝士蛋糕、芝麻糊、可樂、果汁等。女兒堅決地說﹕「我寧願媽媽死得安安樂樂，也不想她『插喉』續命……」可惜，這位長者吞嚥的情况一直未如理想。再過一段時間，進食時更會咬牙皺眉，樣子很不舒服，加上出現嘔吐和便秘，長者需要再次入院接受治療，而家人亦意識到決定的時候來臨了。<\/p>\n

事實上，早在一年半之前，醫生已向女兒提議為病人作「預設臨終照顧計劃」，商討晚期照顧時的護理意願，包括是否接受鼻胃管餵飼。可惜當時女兒未有直接詢問媽媽的意願，現在長者情况轉差，未能表達意願，女兒只好與醫生商量，代為作出合適決定。女兒表明不會安排媽媽接受鼻胃管餵飼及其他急救程序。訂定照顧計劃後，女兒亦安心地繼續照顧媽媽，同時得到其他家庭成員的理解和支持，一向疼愛媽媽的她，縱然有萬般不捨，心裏亦知道這是對媽媽最好的選擇。媽媽生命中最後的日子只使用嗎啡和導入生理鹽水維持基本生命需要；最終在院牧的祈禱和家人陪伴下平靜離世。女兒在照顧媽媽的過程中也上了寶貴一課：珍惜現在所擁有的，預早了解家人的晚期照顧意願，及早準備。最後，女兒說：「我已經覺得好安慰，媽媽走得好安詳，我諗佢都想係咁，舒舒服服咁走，唔使再受苦了。」<\/p>\n

早立醫療指示免爭拗<\/p>\n

盡早與腦退化症人士及家人共同訂立「預設臨終照顧計劃」和「預設醫療指示」對腦退化症人士的晚期照顧尤其重要。能夠讓病人在病發初期參與商討及訂立自己往後所希望接受的護理及照顧，不但使他們的意見獲得尊重，生活質素得到維持，也省卻了家人在醫療照顧上很多不必要的爭拗。<\/p>\n

■晚期腦退化病人照顧小貼士<\/p>\n

‧保持皮膚乾爽及確保有充足水分，多補充流質飲料和使用護膚物品<\/p>\n

‧減少身體某些位置持續受壓，如手肘、腳跟、臀部內側及突起的腳骨位置等，建議使用記憶軟墊或保護物料減輕壓力<\/p>\n

‧定期評估腦退化症人士的關節及疼痛狀况，如有疼痛問題應盡早處理<\/p>\n

‧提供不同感官上的正面刺激，加強對外在環境的連結<\/p>\n

‧嘗試如廁訓練及保持日常衛生<\/p>\n

‧按需要評估合適的食物和質感，避免時常噎住<\/p>\n

‧尋求相關的專業醫護協助，定期更新照顧方向和重點<\/p>\n

‧盡早訂立「預定臨終照顧計劃」及「預設醫療指示」<\/p>\n

■知多啲<\/p>\n

送DVD 共讀照顧者故事<\/p>\n

◆書籍推介：《贏在終點線》<\/p>\n

作者﹕陸文慧律師<\/p>\n

出版社﹕亮光文化<\/p>\n

香港首本由律師用中文撰寫、關於「預設醫療指示」的書籍，圖文並茂，提供普及法律知識。內容深入淺出，清晰感人，附錄〈照顧者七大心魔〉更是特別獻給腦退化症病患照顧者的。<\/p>\n

◆微電影推介：《蚪尾》<\/p>\n

故事大綱<\/p>\n

雪兒（劉玉翠飾）照顧患腦退化症的母親近8年，陪伴她邁向人生最後階段；其間，張醫生（張崇德飾）提出有關雪兒母親去或留的抉擇，雪兒和家人為此爭持不下……<\/p>\n

送《蚪尾》DVD<\/p>\n

有興趣讀者，可寄信到沙田亞公角街27號賽馬會耆智園索取，郵件請附貼上港幣5.7郵票的回郵信封（尺寸為B5以上），信封面請註明「索取《蚪尾》DVD」。<\/p>\n

截止日期：2017年5月31日（數量有限，送完即止）<\/p>\n

《蚪尾》預告片：www.youtube.com\/user\/JCCPAHK<\/a><\/p>\n

文：崔志文（賽馬會耆智園項目經理）<\/p>\n

圖：機構提供、網上圖片<\/p>\n

編輯：林信君<\/p>\n

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