(English version is on the bottom.)
照顧媽媽的印尼外勞璐璐有五年沒回印尼了，2024年4月她告假一個月回印尼，我們姊妹三人就接起照顧媽媽的大小事宜。我雖知照顧人不容易，但是我自覺憑著自己的愛心及耐心，應該沒太大的問題。誰知才在幾天的獨自照顧下，我完全顛覆了我對自己的自我印象。話說四月的第一個禮拜，因為媽媽行動不便，主要是大妹晚上與媽媽睡，我則負責白天的主要照顧事宜而大妹則是扮演輔助的角色（因為她自己還有其他的事要忙），那個禮拜我都還好，照顧媽媽沒有感到太吃力。第二個禮拜我去了很早之前便計劃的日本之行，從美國回來的小妹接手照顧媽媽的事情，我知道她很辛苦，但是我遠在日本，沒辦法幫什麼忙。一個禮拜後，我從日本回來，小妹去外地辦事，我又接手負責照顧的事。這時大妹有幾天有事，我說我沒問題可以晚上跟媽媽睡，白天也可以照顧她。誰知失智的媽媽，晚上有些時候在夢中會呼喊她小時候親近的玩伴或照顧她的同鄉姊姊的名字，這個姊、那個姊叫個不停，有時也會呼喊她的媽媽以及弟弟的名字，這讓原本神經質很淺眠的我，很難入睡。晚上沒睡好，白天精神不濟，耐心也慢慢被消磨掉。媽媽白天有時嗜睡，可以連續睡好幾個鐘頭，這讓我有一些喘息的時間，並且有時間去準備簡單的餐點。但是有時媽媽每隔10幾20分鐘就說要上廁所，但是卻沒尿，接著又要繼續睡，就這樣起來躺下，起來躺下數次，我的耐心又受到挑戰。要不然就是又像晚上一樣，眼睛閉著，但是嘴上不停的叫這個人的名字、叫那個人的名字，連續ㄧ、兩個鐘頭或更久，拍拍她，她又示意沒事要繼續睡，像這種疲勞轟炸的叫聲，也是挑戰我的耐心的時候。就這樣才兩、三天下來，我就崩潰了，只好請大妹晚上再回來陪媽媽睡覺。這時我才知我的耐心真是不夠用，愛心也在沒耐心的情況下，大打折扣。在這同時我也有以下的一些感想：
- 我回想當我的女兒們還是嬰兒的時期，她們常會沒預警的哭，此時你就得放下手上做的事來照看她們，「我」這個字眼已經不存在在我的字彙裏。有時候她們會哭鬧不停，奶也餵了，尿布也換了，卻還是歇斯底里的哭鬧，面對這個無法表達哪裡不舒服的幼兒，我心裡沒有厭煩，只有焦慮，希望能儘早找到她們不舒服的原因，幫她們舒緩状況。照顧失智患者，其實也是一樣道理。雖然他們外觀是成年人，但是內在的年齡到底是多大，我們真的不曉得。在我們的眼裏他們看起來像是似乎沒來由的吵鬧，其實他們並不是故意找你麻煩，而可能是他們身體上或心裏面有些需要想要表達出來，這時保持平常心，不厭不倦不累，才能保持雙方平靜安穩的状態，減緩或減短吵鬧情況。
- 「失智」從中文字面看來好像這個人持續停留在癡呆、失去了智力、缺乏思考能力、無法自理生活的状態中，事實並不然。失智有不同的輕重程度，它的成因也不只是一般人想像的老化而已，花蓮縣衛生局「01 你知道失智症是什麼嗎」，有很精簡的介紹。這個月在我與媽媽照夕相處的生活中，我觀察到幾點：她並不是總是在失憶的状態下，她有時記憶鮮明，有時也很幽默，會講出有智慧、語不驚人死不休的話語。她有很細膩的觀察力，也很敏感，我猜她可能是高敏感人，周遭的事務或別人的反應，都有可能影響到她，因而有時會很情緒化。有時我以為她心不在焉，視而不見，聽而不聞，實際上，她之後（甚至數天後）說的話或做的反應，可知道我和他人的對話及舉動，她都裝進了她的腦袋裏；如果我累了，沒有笑臉對待她，也會影響到她的情緒；如果太多家人同聚一堂，從她的表情也可看出她可能觸景傷情(因為爸爸不在了)。我也注意到，其實她很想要陪伴她的人能給她全部的注意力，如果她看你一直在滑手機，她會想辦法吵你，直到你理她為止。她精神好的時候，她還滿喜歡與人閒聊的。另外一個有趣的事是，我們全家都是外省人，她以前在家主要是用國語與我們溝通，但是現在她在睡夢中，或躺在床上剛醒來的時候，她有時會說海南島的家鄉話，或是初中時住在桃園時的主要語言 －台語，有一天她與復健師們用流利的台語對話，大家都很驚訝。有時聽別人描述有些失智者疑心病重，而且易怒或有暴力傾向，而媽媽則是常向照顧她的人說謝謝，心存感激，與年輕時較嚴厲的個性，完全不同。
- 我對長期的照顧者或看護，充滿無限的敬意，他們日日夜夜、月月年年打理大大小小的事宜，真不是我這種臨時的替代者能相提並論的。先不說把屎把尿，煮飯餵食的勞力事，日以繼夜、不離不棄的心力投入，我就不知道我能支撐多久，還能不愁眉苦臉的過日子。我看著璐璐照顧媽媽時，有時口中哼著歌，不知道那是不是她舒解的管道，方且不論她是否開心，但是從小地方可以看出她總是盡忠職守，也願意多做份外之事。在復健中心，我也看過一個外勞，一直笑咪咪的幫助她的主人，並不時的鼓勵她的主人繼續加油，很令人感動。
- 不管是照顧失智或任何輕、重症病的患病家人，照顧者常會碰到許多挑戰，也或許經過長久下來的照顧，會有身心俱疲的感覺，適時尋求外在的幫忙是有必要的。你是否聽說過這樣一句話：“休息是為了走更長遠的路”? 不要因為面子問題而硬撐在那裏，不管是尋求喘息的幫助，或是與其他照顧者交換心得或吐苦水，或許多少都有一些幫助。
- 有些時候照顧人的事情看起來簡單，但深究其步驟，並非這麼輕而易舉。例如去復健這件事，要將媽媽弄醒並搞得出得了門去復健，真得花些工夫跟技巧，並要狠著心不能妥協讓她回去睡覺，否則好幾次跟本沒法出門復健。再說去醫院看醫生，有些大醫院很難找到停車位，開車到醫院後，放下一個人帶媽媽看病，還要想辦法開車繼續轉，轉到看完病後再來接人。如果叫給殘障人服務的計程車，你必需先預定，有時你要的時間或許沒空檔，只能遷就選別的時間，而且他們都把接送客人的行程排得滿滿的，放下這個客人後，又去接下一個客人，因此你也得好好的預估你看病的時間，否則約太早，如果剛好那天看病時間拖很長，你只能心急、焦慮，另想辦法，但是如果約太晚，你也只好枯坐等待，這時要如何安撫想回家睡覺的媽媽又是另一回事。有時不親身經歷這些事，不太能理解這些挑戰及難處。
- 我想照顧成人與照顧嬰兒或幼兒類似，可以根據不同的理論及信念，從嚴守作息吃飯時刻表到自由隨性無為之制都有，誰是誰非，誰好誰壞都很難說。我自知我是心太軟，常經不起媽媽的哀求，就姑且不做一些該做的事，像強迫她自己起身、走路、少睡覺，看到璐璐常不幫她，要強迫她自己出力，聽起來很殘酷，有時看了心疼，但同時我也看到媽媽因此比較強健，走路也比較穩當。人的肌肉不動就很容易萎縮，為了她好，真得狠一點心。
- 這次回來我發現媽媽活潑多了，她的溝通能力明顯進步很多，問她誰是誰，她能叫得出名字的比例也比以前大很多。我觀察到璐璐常跟她講話，不管媽媽是否有回應與她有雙向的對話，這種語言的刺激對減緩失智的惡化，我想應該是有作用的。
Lulu, an Indonesian migrant worker who has been caring for my mother, hasn’t returned to Indonesia in five years. In April 2024, she finally took a month’s leave to visit her homeland, and my two sisters and I stepped in to take care of our mom. Initially, I believed that with love and patience, I could handle the responsibility without major issues. However, after just a few days of caring for her alone, my self-perception underwent a complete overturn. During the first week of April, my sister P stayed with our mom at night because Mom couldn’t get out of bed by herself. I took charge of daytime care, and my sister P assisted (as she had other commitments). Everything seemed manageable. Then, the following week, I embarked on a long-planned trip to Japan. My younger sister S, who had returned from the United States, took over the caregiving duties. I knew it was challenging for her, but being far away in Japan, I couldn’t offer much help. Upon my return from Japan, my sister S had to leave town for some personal matters, so I resumed the role of caring for Mom. During this time, my sister P also had other commitments elsewhere. I assured everyone that I could handle sleeping with Mom at night and providing daytime care. Little did I know that my mom, who suffers from dementia, would occasionally call out names from her dreams — childhood playmates, village sisters who cared for her in her youth, even her mother and younger brothers. I am a light sleeper. These nighttime calls disrupted my sleep badly. I found myself sleep-deprived, low on energy during the day, and gradually losing my patience. My mom experienced frequent bouts of drowsiness during the day, often sleeping for hours on end. This provided me with some respite and allowed me to prepare simple meals. However, there were moments when my mom insisted on going to the bathroom every 10 or 20 minutes, even though she didn’t actually need to go. She would then return to bed, only to repeat the process multiple times. These situations tested my patience. Like at night, with her eyes closed, my mom would call out this name or that name during the day. She would continue this for hours. When I patted her hand and tried to wake her up, she signaled that she would like to continue sleeping. Sounds like this, which are a bombardment of fatigue, also challenge my patience. But after just a few days, I reached my limit and had to ask my sister P to return and share the nighttime caregiving duties. It was then that I realized my patience was insufficient, and my love waned when impatience set in. These experiences have given me much to reflect upon.
- I reflect on the time when my daughters were infants. Their cries would erupt unexpectedly, demanding immediate attention. In those moments, the word “I” vanished from my vocabulary. Sometimes, despite feeding and diaper changes, their cries persisted relentlessly, leaving me both concerned and anxious. These tiny beings couldn’t articulate their discomfort, and my role was to decipher the reasons behind their distress and alleviate their condition. A similar perspective applies to caring for individuals with dementia. Although they appear as adults, their inner age remains a mystery. To us, their fussiness seems baseless, but it’s essential to recognize that they aren’t intentionally causing trouble. Instead, they harbor unexpressed physical or emotional needs. In such situations, maintaining a calm demeanor is crucial. Only when we remain composed can we create a stable environment and gradually mitigate any disruptions.
- The term “dementia” in Chinese conjures an image of perpetual mental fog, diminishing intelligence, and an inability to care for oneself. However, reality may not be the case. Dementia exists in varying degrees of severity, and its causes extend beyond mere aging, contrary to popular belief. The Hualien County Health Bureau succinctly introduces this topic in their piece titled “01 Do You Know What Dementia Is.” Recently, while spending time with my mother, I’ve made several observations. She doesn’t constantly dwell in a state of forgetfulness. At times, her memory is vivid, and she surprises us with her humor—cracking jokes or sharing sagely advice. Her powers of observation are delicate, and she is pretty sensitive. I suspect she might be a highly sensitive person. External factors, such as her surroundings or others’ reactions, seem to significantly impact her emotions. As a result, she occasionally experiences intense emotional responses. Even when she appears absent-minded or unresponsive, her subsequent words or reactions (sometimes days later) reveal that she keenly observes my interactions with others, storing every detail in her mind. I’ve noticed that my mood directly affects hers. If I’m fatigued and fail to greet her with a smile, it impacts her emotional state. Similarly, when too many family members gather, her expression hints at potential distress (likely due to my father’s absence). Interestingly, she craves undivided attention from her companions. If she catches someone engrossed in their phone, she’ll ingeniously find ways to draw their focus back to her. In moments of joy, she loves engaging in conversations. And here’s a fascinating twist: while Mandarin remains our family’s primary language, my mother occasionally switches to her native Hainan Island dialect or Taiwanese which is the dialect that she spoke during her junior high school years in Taoyuan. Once, she even conversed fluently in Taiwanese with rehabilitation therapists, leaving everyone pleasantly surprised. Contrary to stereotypes, my mother expresses gratitude and frequently says thank you to those who care for her. This starkly contrasts with her stricter and more stern demeanor from her younger self.
- I hold boundless respect for long-term caregivers and caretakers. They shoulder the responsibility day and night, month after month, year after year, in a way that a temporary replacement like me cannot truly compare to. The labor involved—whether it’s tending to basic bodily needs, preparing meals, or providing emotional support—requires unwavering dedication. As for myself, I wonder how long I could sustain this work without showing signs of strain. Observing Lulu, who occasionally hums songs while caring for my mom, I can’t help but wonder if that serves as her channel of relief. Regardless of whether she was happy or not, I could tell from small things that she was always dedicated to her duties and willing to do more to help out. In a rehabilitation center, I witnessed a foreign worker who consistently wore a smile while assisting her master. This caregiver encouraged her master to persevere, offering unwavering support. The scene with such love and compassion is truly touching.
- Whether caring for family members with dementia or any mild or severe disease, caregivers often encounter numerous challenges. The physical and mental exhaustion that accumulates over extended periods of care can be overwhelming. Seeking external assistance in a timely manner is crucial. Have you ever heard the idiom, “A little rest goes a long way”? Don't try to hang in there just to save face Whether it involves seeking respite help, exchanging tips, or candidly sharing experiences with other caregivers, there may be relief and support waiting on that path.
- Sometimes caring for others seems deceptively simple, but upon closer examination, it reveals it's not so simple. Take rehabilitation, for instance. It requires considerable effort and skill to wake Mom up and get her ready for rehabilitation sessions. We must be resolute—refusing to compromise and not allowing her to go back to sleep, otherwise we won’t be able to go to rehabilitation. Hospital visits present another set of challenges. Large hospitals often lack parking spaces. Arriving at the hospital, we drop off one person accompanying Mom for her doctor’s appointment, then embark on the task of finding parking or driving around. Coordinating the pickup afterward involves careful timing and strategic driving. If we opt for a disabled taxi, reservations are essential. Balancing our preferred time with their availability adds another layer of complexity. Predicting appointment durations is crucial. Set the pickup time too early, and anxiety sets in if the appointment runs long. Set it too late, and we find ourselves waiting long and try comforting Mom as she yearns to return home and rest. Sometimes it is hard to understand the challenges and difficulties without experiencing these things firsthand.
- Caring for adults bears similarities to caring for babies or young children. The approaches can vary widely, influenced by different theories and beliefs. Some caregivers strictly adhere to schedules for waking up, resting, and eating, while others allow total freedom without imposing rules. Determining what’s right or wrong, good or bad, remains challenging. Personally, I find myself soft-hearted, often unable to resist my mother’s pleas. Consequently, I sometimes neglect tasks I should perform—like encouraging her to get up, walk, or sleep less. Observing Lulu’s caregiving approach, I’ve noticed a different perspective. Rather than immediately rendering assistance, Lulu encourages my mom to get up, walk, or eat independently. It might seem harsh, and I feel distressed witnessing it. However, I also recognize the positive outcome: my mother grows stronger and walks more steadily due to this approach. Our muscles easily atrophy without movement. Ultimately, for her well-being, sometimes we must be tough.
- When I came back home this time, I noticed a remarkable change in my mom. She appeared much livelier, and her communication skills had significantly improved. When asked about people, she could now recall a greater proportion of their names compared to before. Observing Lulu’s interactions with mom, I realized that Lulu engaged in frequent conversations, even when mom didn’t always respond. This consistent language stimulation seems to be effective in slowing down the progression of dementia.
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