如何与失智症患者再次建立有意义的联系 Anne Basting: How to meaningfully reconnect with those who have dementia

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演员: Anne Basting


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