從共舞到獨舞 - 失智症老人妻子照顧者之婚姻故事

根據98年度老人生活狀況調查報告及95年度身心障礙者生活需求調查報告之統計分析指出，國內失智症老人之照顧者主要特性為妻子照顧者居多，且有三成照顧者本身也是老人；其次，受到失智症病症特殊性的影響，患者的認知、記憶及語言表達等功能將逐漸退化，對於妻子照顧者來說，彷彿走在一段被遺忘的旅途上，她們如何詮釋夫妻共同記憶的失去，又如何面對老年期自我統整之挑戰，乃是本研究關注的焦點與探究目的。本研究著重於生命歷程及主體生命的經驗與感受，故採質性研究中的生命史研究為方法，以大台北地區六名介於60至82歲之間的失智老人妻子照顧者作為受訪對象。本研究發現失智老人的妻子照顧者在老年期統整自己的生命時，其自我混搭了妻子、照顧者及老人三種角色。首先，老年婦女受到傳統中華文化與對婦女角色的規訓極深，也較看重婚姻責任與承諾，因此縱使失智丈夫已遺忘妻子，也無法執行原有的角色與功能，甚至連日常生活能力也喪失，卻不會妨礙自己對於妻子的角色及身分之認同，是其特殊之處。其次，目前夫妻相處的時間裡填滿了個人照顧工作，形成了妻子照顧者覺得現在的生活填滿了對於丈夫的照顧工作，又失智丈夫隨著病程嚴重度，逐漸無法發揮溝通、互動、決策等功能，甚至無法回應與表達情感支持、失去夫妻作伴的意義，發展出婚姻觀的質變。至於妻子照顧者在面對老年期自我統整之挑戰，研究者認為有一派的妻子照顧者認為自己「人生已接近圓滿、對於每個階段的角色都沒有遺憾、認為自己一生付出沒有虧欠他人」，此類型妻子照顧者與丈夫失智前的關係較好、社會支持程度較高、肯定自我過去人生故事的價值與貢獻；但也有另一派妻子認為「對人生感覺較絕望、尚有遺憾」，此類型的妻子則認為自己辛苦付出卻沒有獲得相對的回饋，也因而感到生命無望。總言之，失智老人的妻子照顧者也是老人，然她們的需求往往被其他角色所蒙蔽。最後，本研究也研提建議供制訂老人照顧政策與服務之參考。

關鍵字

妻子照顧者；失智症；生命史研究；老年婦女

並列摘要

According to the Report of the Senior Citizen Condition Survey 2009 and the Report of Disabled People’s Living Condition and Demand Survey 2006, in Taiwan, the main characteristics of the caregivers of the elderly with dementia are that most of the caregivers are wives and 30% of the caregivers themselves are also elderly. Secondly, since patients are affected by the particularity of dementia symptoms, their cognitive, memory, and language expression functions will gradually deteriorate. For the wife caregivers, it seems that they are on a journey to oblivion. How they deal with the loss of memories shared with their husbands and how they face the challenge of self-integration in old age are the main focus and purpose of this study. This study focuses on the life course and the life experience and feelings of the subject. It adopts the life history research method in the qualitative research with six wife caregivers of the elderly suffering from dementia aged between 60 and 82 years old in the greater Taipei area taken as the interviewees. In this study, it has been found that along with managing their own lives in the old age, the wife caregivers of the elderly with dementia take on mixed roles of a wife, caregiver and senior themselves. First of all, elderly women are deeply disciplined by the traditional Chinese culture and the expected roles of women, and they also pay more attention to marriage responsibility and commitment. Therefore, even if the dementia-stricken husband has forgotten his wife, and become unable to perform his original role and function, or even activities of daily living, what is particularly notable is that the husband will not be hindered from recognizing the role and identity of his wife. Secondly, at this stage, when the time the husband and wife spend together is occupied with personal care work, the wife caregiver comes to feel that her current life is full of care work for her husband. With the severity of the disease escalating, the dementia-stricken husband gradually becomes unable to communicate, interact, make decisions and other functions, or even unable to respond to and express emotional support, which results in his inability to accompany his wife as a life partner and qualitative changes in views on marriage. In addition, the researchers believe that in the face of the challenge of self-integration in the old age, some wife caregivers think that they are "close to the completion of life, having no regrets about their roles during each stage and thinking that they have not owed anything to others in their life". This type of wife caregivers had a better relationship with their husbands before they were diagnosed with dementia, have a higher degree of social support, and approve the value and contributions in their previous life. On the other hand, some wives “feel despair and regret about life". These types of wives think that they have not received corresponding return for their hard work, and therefore feel hopeless about life. In general, although the wife caregivers of the dementia-stricken elderly are also seniors, their needs are often overshadowed by other roles. Finally, this study also provides suggestions for the development of elderly care policies and services.