听力课堂TED音频栏目主要包括TED演讲的音频MP3及中英双语文稿,供各位英语爱好者学习使用。本文主要内容为演讲MP3+双语文稿:用创意护理,与失智症老人重建有意义的连接 ,希望你会喜欢!
【演讲者及介绍】 Anne Basting
安妮·巴斯汀将艺术和人文融入到沉默病人的生活和护理环境中。
【演讲主题】如何与痴呆症患者重新建立有意义的联系
How to meaningfully reconnect with those who have dementia.
【中英文字幕】
翻译者 Wanting Zhong 校对者 Yanyan Hong
00:00
Thirty years ago, I walked into a nursing home, and my life changed forever. I was there to visit my grandmother Alice. She was a very powerful woman who had lost a battle with a stroke that stole her ability to speak. Alice had just three forms of communication left. She had this sound that was like, "tss, tss, tss," that she could shift in tone from emphatic, "no, no, no," to enticing, "yes, you've almost got it." She had an incredibly expressive index finger, which she could shake and point with frustration. And she had these enormous pale blue eyes that she could open and close for emphasis. Wide open seemed to say, "Yes, you've almost got it," and closing slowly was -- well, it didn't really need much translation.
三十年前, 我走进了一家养老院, 这趟经历彻底改变了我的人生。 我是去拜访我的祖母爱丽丝。 她是位很强大的女性, 却因败给了中风, 失去了说话的能力。 爱丽丝只剩下三种交流的方式。 她能发出这种 “嘶嘶” 的声音, 她可以改变语调, 时而坚决果断, 仿佛在说 “不,不,不”, 时而循循善诱,仿佛在说 “没错,你就快弄明白啦。” 她的食指表现力异常丰富, 她可以左右摇动手指, 或是恼火地指指点点。 她有一双浅蓝色的大眼睛, 她会通过睁大或合上眼睛表示重点。 睁大双眼似乎是在说, “没错,你还差一点 就明白我的意思啦,” 而缓缓闭目则代表着—— 嗯,似乎不需要我多加解释吧。
01:09
It turns out that Alice had taught me that everyone has a story. Everyone has a story. The challenge for the listener is how to invite it into being, and how to really hear it.
事实上,爱丽丝教给了我一个道理: 每个人都有一个故事。 每个人都有一个故事。 而聆听者的挑战 则是如何邀请对方说出这个故事, 如何真正倾听这个故事。
01:27
Now, Alzheimer's and dementia, these are two words that, when you say them in front of people, you can watch a cloud descend over them. You can imagine me at dinner parties. "What do you do?" "Well, I invite people with Alzheimer's and dementia into expression. Where are you going?"
“阿茨海默症” 和 “失智症”, 当你在人们面前说出这两个字眼, 你就能看到一层阴霾 笼罩到了他们的身上。 你可以想象我去参加晚餐聚会: “ 你是做什么工作的?” “ 我邀请阿茨海默症和 失智症患者表达他们自己。 等等你要去哪里?”
01:46
(Laughter)
(笑声)
01:48
Fear and stigma wrap themselves so tightly around an experience that affects 47 million people across the world, and they can live with this diagnosis for between 10 and 15 years, and that number, 47 million, is supposed to triple by 2050. Family and friends can fade away, because they don't know how to be in your company, they don't know what to say, and suddenly, when you need other people the most, you can find yourself really painfully alone, unsure of the meaning and the value of your own life.
全世界有 4700 万人经受这种经历的 恐惧与污名困扰, 他们将伴随这个诊断 继续生活 10 年到 15 年, 而 4700 万这个数字 有可能在 2050 年翻三倍。 家人与朋友会渐行渐远, 因为他们不知道该如何陪伴你, 他们不知道该说什么话, 突然, 就在你最需要其他人的时候, 你发现你自己已深陷 孑然一人的痛苦之中, 不确定自己的人生 还有什么意义与价值。
02:28
Science is pushing for treatments, dreaming of cures, but loosening that grip of stigma and fear could ease the pain of so many people right now. And luckily, meaningful connection doesn't take a pill. It takes reaching out. It takes listening. And it takes a dose of wonder.
科学正在促进治疗, 梦想着能够治愈它, 但松开那紧握着的污名与恐惧, 现在就能缓解如此多人的痛苦。 所幸的是,有意义的联系 并不需要吃药。 需要的是伸出援手, 需要的是侧耳聆听, 还需要一剂好奇心。
02:56
That really has become my unending quest, set in motion by Alice and then later on by really countless elders in nursing homes and day centers and those struggling to stay at home. And it comes down to the question of how. How do you meaningfully connect?
这已经成为了我无止境的探寻, 最初,是爱丽丝促使了我开始, 后来是无数养老院、日间护理中心里 和挣扎着想继续留在家里的 老人继续推动我进行求索。 最后回到了 “怎么办” 的问题上, 怎样才能富有意义地建立联系?
03:16
I got a big part of that answer from a long-married couple in Milwaukee, Wisconsin, where I'm from, Fran and Jim, whom I met on a rather dreary winter day in their tiny, little kitchen in a humble duplex over by Lake Michigan. And when I walked in, Fran and a caregiver and a care manager greeted me really warmly, and Jim stood staring straight ahead, silent. He was on a long, slow journey into dementia and was now beyond words. I was there as part of a project team. We were doing what we called "artistic house calls," with a really simple goal of inviting Jim into creative expression, and hopeful in modeling for Fran and the caregivers how they could meaningfully connect using imagination and wonder. Now, this was going to be no small task, because it turns out Jim had not spoken in months. Could he even respond if I invited him into expression? I didn't know.
对这个问题的回答 有很大一部分来自我的故乡 威斯康星州密尔沃基市的 一对结婚多年的夫妇, 弗兰和吉姆。 那是一个萧瑟的冬日, 在密歇根湖边一栋简陋的复式楼里, 我在他们狭小的厨房里 第一次和他们见了面。 当我走进房间时, 弗兰和一位看护工 以及一位照护管理师 非常热情地向我打招呼, 而吉姆则是直直地瞪视着前方, 沉默地站着。 他身处一趟漫长而缓慢的、 通往失智症的旅程, 如今已然无法言语。 我是作为项目组的成员前去拜访。 我们在进行所谓的 “艺术家访”, 目标非常简单—— 邀请吉姆进行创意表达, 并希望能为弗兰和看护者树立榜样, 告诉他们如何用想象力与好奇心 建立有意义的联系。 而今,这并非易事, 因为吉姆已经好几个月没有开口了。 如果我邀请他进行表达, 他到底能进行回应吗? 我不知道。
04:28
Family members, when they try to connect, most commonly will invoke a shared past. We say things like, "Do you remember that time?" But nine times out of 10, the pathway for that one answer to travel in the brain is broken, and we're left alone with a loved one in the fog.
当家人们试图建立联系时, 他们大多数会援用 某段过往的共同经历。 比如我们会说, “ 你还记得那个时候吗?” 但十有八九, 让答案回到大脑的通路是断掉的, 我们心爱的人如坠五里雾中, 留下我们孤身一人。
04:50
But there is another way in. I call them beautiful questions. A beautiful question is one that opens a shared path of discovery. With no right or wrong answer, a beautiful question helps us shift away from the expectation of memory into the freedom of imagination, a thousand possible responses for people with cognitive challenges.
但还有另一种办法, 我把它叫做 “美丽的提问”。 一个美丽的提问 能开拓共同探索的道路。 它的回答无关对错; 一个美丽的提问能帮助我们 抽身离开对回忆的期待, 踏入想象的自由之中, 对认知受挫的人 可以开拓一千种可能的回答。
05:19
Now, back in the kitchen, I did know one thing about Jim. I knew that he liked to walk along Lake Michigan, and when I looked around that kitchen, I saw, over by the stove, this trunk that was just covered in little pieces of driftwood. And I thought, "I'll try a question that he could answer without words." So I tried, "Jim, can you show me how water moves?" It was silent for a while, but then really slowly he took a step over to that trunk and he picked up a piece of the driftwood and he held it out, and then very slowly he began to move his arm, leading with that driftwood. In his hand, it became buoyant, in sync with the motion of the waves that he made with his arms. It began this slow journey across calm waters, this gentle rolling to the shore. Transferring his weight from left to right and back again, Jim became the waves. His grace and his strength just took our breath away. For 20 minutes, he animated one piece of driftwood after the other. Suddenly, he was not disabled. We were not gathered in this kitchen for a care crisis. Jim was a master puppeteer, an artist, a dancer.
现在,回到厨房, 我知道关于吉姆的一件事。 我知道他喜欢沿着密歇根湖散步, 而当我环顾那个厨房, 我看到炉子旁边 有一个箱子上堆满了小块浮木。 于是我心想, “ 让我试试问一个 他不需要说话也能回答的问题。” 于是我试着问道, “ 吉姆, 你能不能跟我演示一下 水是怎么动的呢?” 他沉默了一会儿, 但接下来他非常缓慢地 向那个箱子迈出了一步, 他捡起了一块浮木, 接着他伸手举着浮木, 然后他开始非常缓慢地移动他的手臂, 引导那块浮木。 它在他的手中浮动, 随着他用手臂模仿的波浪一同沉浮。 它开始了在宁静水面 上的缓慢旅途, 乘着温柔的波浪, 轻轻地朝岸边进发。 他把身体重量从左换到右边, 再从右挪回左边, 吉姆变成了波浪。 他的优雅和力量让我们屏息惊叹。 整整 20 分钟, 他让一片又一片的浮木灵动起来。 突然间,他不再身患残疾。 我们聚集在这个厨房里 并不是要解决看护危机。 吉姆是一位木偶大师, 一位艺术家, 一名舞者。
07:24
Fran later told me that that moment had been a turning point for her, that she learned how to connect with him even as he progressed through the dementia. And it really became a turning point for me, too. I learned that this creative, open-ended approach could help families shift, expand their understanding of dementia as more than just tragic emptiness and loss into also meaningful connection and hope and love. Because, creative expression in any form is generative. It helps make beauty and meaning and value where there might have been absolutely nothing before. If we can infuse that creativity into care, caregivers can invite a partner into meaning-making, and in that moment, care, which is so often associated with loss, can become generative.
后来弗兰告诉我, 那一刻对于她来说是一个转折点, 即使吉姆的失智症日益加重, 她也学会了如何与他建立联系。 而这段经历对我来说 确实也是一个转折点。 我认识到了这种富有创意的、 开放性的方法 能帮助家庭转变、 拓宽他们对失智症的理解, 让他们知道这并不只是 悲惨的空虚与失去, 还可以变成有意义的联系、 还有希望 与爱。 因为任何形式的创意表达 都是创造的过程。 它能让美与意义与价值 在原本一片荒芜的地方苏生。 如果我们能把这种创造力 注入到看护之中, 看护者就能邀请伴侣一起创造意义, 而在那一刻, 往往与 “失去” 联系在一起的看护 也能创造出新的意义。
08:37
But so many settings of care offer bingo and balloon toss. Activities are passive and entertainment-oriented. Elders sit and watch and applaud, really just distracted until the next meal. Loved ones trying to keep their partners at home sometimes don't have anything to do, and so they resort to watching television alone, which compounds the symptoms of dementia with what researchers now tell us really are the devastating impacts of social isolation and loneliness.
但很多看护设施 进行的是宾果(bingo) 或者扔气球之类的游戏。 这些活动是被动的、娱乐性质的。 老人们一边坐着观看一边鼓掌, 充其量只是在下一顿饭之前 转移注意力的方式。 有的人试图让 失智症的伴侣待在家里, 可有时却让他们无所事事, 只能独自一人看电视, 这反而加重了失智症的病情, 因为目前的研究发现, 社交隔离和孤独感 是造成毁灭性打击的元凶。
09:24
But what if meaning-making could be accessible to elders and their care partners wherever they lived? I've really been totally transformed and captivated by bringing these creative tools to caregivers and watching that spark of joy and connection, discovering that creative play can remind them of why they do what they do.
但假如老年人和照顾他们的伴侣 无论住在哪里, 都能获得创造意义的手段呢? 令我完全转变、深深着迷的是 把这些创意工具带给看护者, 看见那喜悦与联结的火花, 发现创意的玩乐 能让看护者重新想起 自己为什么坚持到了现在。
09:51
Bringing this creative care to scale could truly shift the field. But could we do it? Could we infuse it into a whole care organization or an entire care system?
如果能扩大这种创意看护的规模, 我们就能真正地改变这个领域。 但我们能做到吗? 我们是否能将这种看护模式 注入到整个看护组织, 甚至是整个看护系统中呢?
10:09
The first step towards that goal for me was to assemble a giant team of artists and elders and caregivers in one care facility in Milwaukee. Together, over two years, we tackled reimagining the story of Homer's "Odyssey." We explored themes. We wrote poems. Together, we created a mile-long weaving. We choreographed original dances. We even explored and learned Ancient Greek with the help of a classics scholar. Hundreds of creative workshops we embedded into the daily activities calendar and invited the family members to join right along with us, and had caregivers and staff from every single area of care collaborating on programming for the first time. The culminating moment was an original, professionally produced play that blended the professional performers right alongside the elders and the caregivers, and we invited a paying audience to follow us from scene to scene, one in the nursing home, in the assisted living dining room, and finally in the chapel for the final scene where a chorus of elders all playing Penelope lovingly welcomed Odysseus and the audience home. Together, we had dared to make something beautiful, to invite elders, some with dementia, some on hospice, into making meaning over time, to learn and grow as artists. All this in a place where people were dying every day.
对于我来说,迈向这个目标的第一步 是在密尔沃基市的一个看护设施 聚集了一支由艺术家、老人 和看护者组成的庞大队伍。 在两年时间里, 我们一起挑战了对荷马史诗 《奥德赛》重新进行想象, 我们探索了各种主题, 我们写诗。 我们一同创作出了 一幅 1.5 公里长的编织画。 我们编排了原创舞蹈。 我们甚至在一位古典学者的帮助下 探索并学习了古希腊语。 我们把数百个创意训练营 纳入了日常活动安排, 并邀请老人的家人们一起加入, 这也是第一次让所有护理方向的 看护者和职工一起 合作组织一个项目。 这个项目的高潮 是一部原创的、 专业监制的戏剧, 其中有职业表演者和老人 与看护者一起同台演出, 我们邀请买了票的观众 跟随我们探访每一个场景, 从养老院内, 到生活辅助餐厅, 最后在教堂里 迎来终幕: 一个老年人合唱团 一齐扮演佩涅洛佩, 深情地迎接奥德修斯与观众们回家。 大家共同勇敢地尝试了 去做一些美丽的事情, 去邀请患有失智症 或者接受临终关怀的老人们 一起日积月累地做有意义的事, 去像艺术家那样学习和成长。 而这一切都是在这个 每天都有人去世的地方进行的。
12:06
I find myself now in a place where I'm having to tackle this challenge of meeting a person with dementia across that gap in a more personal way. At a family dinner over the holidays, my mother, who was seated next to me, turned to me and said, "Where's Annie?" My funny and beautiful and feisty mother had been diagnosed with Alzheimer's. And I found myself in that place that everyone dreads. She didn't recognize me. And I had to figure out fast if I could do what I'd been coaching thousands of other people to do, to connect across that gap. "Do you mean Ellen?" I said, because my sister's empty chair was just right across the table from us. "She just went to the bathroom." And my mother looked at me, and then something deep inside sparked, and she reached out and smiled and touched my shoulder and she said, "You're right there." And I said, "Yes, I am right here."
现在,我发现我自己 也遇到了这样的事情, 需要去应对这个 跨越联系的鸿沟 与失智症患者相逢的挑战。 在一次假日家族聚餐上, 坐在我旁边的母亲 转过头对我说,“ 安妮在哪里?” 我那有趣、美丽、爽朗的母亲 被诊断患有阿茨海默症。 我发现我也处在了 那个所有人都恐惧的境地。 她不认得我了。 而我必须马上弄清楚 我自己能不能做到 我已经教给了千百人的事情—— 跨越鸿沟建立联系。 “ 您是说爱伦吗?” 我说道, 因为我妹妹的空座位 就在我们两人的对面。 “ 她刚刚去了洗手间。” 我的母亲看着我, 然后在她脑海深处, 有什么东西亮了一下, 她伸出手,微笑着摸摸我的肩膀, 然后说,“ 你就在这里呀。” 而我说,“ 没错, 我就在这里。”
13:27
I know that that moment is going to happen again and again, not just for me and my mom but for all 47 million people across the world and the hundreds of millions more who love them.
我知道这个瞬间 还会一次又一次地重演, 不只是在我和母亲身上, 还会在全世界 4700 万人 以及无数深爱他们的人 身上发生。
13:42
How will we answer this challenge that is going to touch the lives of every family? How are our care systems going to answer that challenge? I hope it is with a beautiful question, one that invites us to find each other and connect. I hope our answer is that we value care and that care can be generative and beautiful. And that care can put us in touch with the deepest parts of our humanity, our yearning to connect and make meaning together all the way to the end.
我们该如何应对 这个将会触及每一个家庭的挑战? 我们的看护系统 该如何应对这个挑战? 我希望我们能对这个挑战 回以一个美丽的提问, 一个邀请我们找到彼此、 建立联系的提问。 我希望我们能回答说, 我们关心对老人的看护, 看护可以是有所成效的, 也可以是美丽的; 看护能让我们触及人性的最深处—— 我们对与彼此连结、 共同创造意义的渴望, 一直到人生的尽头。
14:28
Thank you.
谢谢。
14:29
(Applause)
(掌声)