A mother and son's photographic journey through dementia | Tony Luciani

譯者: Lilian Chiu 審譯者: Yuchen Lu

When my 91-year-old mother, Elia, moved in with me,

當我九十一歲的媽媽 艾莉亞搬來跟我一起住時，

I thought I was doing her a service.

我認為我是在服務她。

In fact, it was the other way around.

事實卻正好相反。

You see, Mom was having issues with memory loss and accepting her age.

我媽媽有失憶的問題， 而且她無法接受她的年紀。

She looked defeated.

她看起來很挫折。

I tried to make her as comfortable as possible,

我盡可能讓她舒服些，

but when I was at my easel, painting,

但當我在畫架前畫畫時，

I would peek over and see her just ... there.

我會偷瞄，看到她就在「那裡」。

She'd be staring at nothing in particular.

她並沒有真的在看什麼。

I'd watch her slowly climb the stairs,

我會看著她慢慢地爬上樓梯，

and she wasn't the mom I grew up with.

那不是我成長過程中的那個媽媽。

I saw, instead, a frail,

取而代之，我看到的是一個虛弱、

tiny, old woman.

瘦小的老婦人。

A few weeks went by, and I needed a break from my painting.

幾週過去了，我作畫 也需要休息一下。

I wanted to play with the new camera I had just bought.

我想要玩玩我剛買的相機。

I was excited -- it had all sorts of dials,

我很興奮——它有 各式各樣的控制器、

buttons and settings I wanted to learn,

按鈕、設定，我想好好學一下，

so I set up my tripod facing this large mirror,

我把我的三腳架設定好， 面向這面大鏡子，

blocking the doorway to the only bathroom in the house.

擋住了整間房子中 通往浴室的唯一通道。

(Laughter)

（笑聲）

After a while, I hear,

不久後，我聽到：

(Imitating Italian accent) "I need to use the washroom."

「我要上廁所。」 （模仿義大利口音）

(Laughter)

（笑聲）

"Five minutes, Mom. I need to do this."

「五分鐘就好，媽。 我得把這弄好。」

15 minutes later, and I hear, again,

十五分鐘後，我再次聽到：

"I need to use the washroom."

「我要上廁所。」

"Five more minutes."

「再五分鐘。」

Then this happened.

接著就變成這樣。

(Laughter)

（笑聲）

(Applause)

（掌聲）

And this.

還有這樣。

(Laughter)

（笑聲）

And then, this.

接著，這樣。

(Laughter)

（笑聲）

I had my "aha!" moment.

我有了「啊哈！」的一刻。

We connected.

我們連結了。

We had something tangible we could do together.

有了件很實在的事情， 是我們可以一起做的。

My mom was born in a small mountain village in central Italy,

我媽媽是在義大利中部山區的 小村落中出生的，

where her parents had land and sheep.

她的父母在那裡擁有土地和羊群。

At a young age, her father died of pneumonia,

她很小的時候，她的爸爸 就因為肺炎過世，

leaving his wife and two daughters alone with all the heavy chores.

把他的農莊雜務留給 他的妻子和兩個女兒。

They found that they couldn't cope.

她們發現她們實在承受不了。

So a very hard decision was made.

所以做了一個很艱難的決策。

Mom, the oldest, at 13,

我媽是長女，十三歲，

was married off to a complete stranger twice her age.

出嫁給年齡是她兩倍的陌生人。

She went from being just a kid and was pushed into adulthood.

她本來只是個孩子， 被迫長大為成人。

Mom had her first child when she was only 16.

她才十六歲時就有了第一個孩子。

Years later, and now living in Toronto,

數年後一直到現在， 媽媽都住在多倫多，

Mom got work in a clothing factory

在一間衣服工廠工作，

and soon became manager of a very large sewing department.

很快就在一個非常大的 縫紉部門當上主管。

And because it was full of immigrant workers,

因為很多工人都是移民者，

Mom taught herself words from translation books.

媽媽透過翻譯書來自學字詞。

She then practiced them in French, Greek, Spanish, Portuguese, Danish,

接著，她在家裡到處練習， 用法語、希臘語、西班牙語、

葡萄牙語、丹麥語、波蘭語、 俄語、羅馬尼亞語、匈牙利語。

Polish, Russian, Romanian, Hungarian, all around the house.

I was in awe of her focus and determination to succeed

我好敬畏她對於自己熱愛的事

所投入的專注和成功的決心。

at whatever she loved to do.

After that bathroom "aha!" moment,

在浴室的「啊哈！」時刻之後，

I practiced my newfound camera skills with Mom as portrait model.

我讓我媽媽當模特兒， 來練習我新發現的相機技巧。

Through all of this, she talked, and I listened.

在這個過程中，她說，我聽。

She'd tell me about her early childhood and how she was feeling now.

她跟我說她孩童時期的事， 以及她現在的感受。

We had each other's attention.

我們擁有彼此的注意力。

Mom was losing her short-term memory,

媽媽失去的是她的短期記憶，

but was better recalling her younger years.

但她較會回憶起她更早些的時期。

I'd ask, and she would tell me stories.

只要我問，她就會跟我說故事。

I listened, and I was her audience.

我會傾聽，我是她的聽眾。

I got ideas.

我有想法產生。

I wrote them down, and I sketched them out.

我會把想法寫下來， 再把它們畫出來。

I showed her what to do by acting out the scenarios myself.

我會親自把情境給演出來， 用這種方式告訴她該做什麼。

We would then stage them.

接著我們就會開始上演。

So she posed, and I learned more about photography.

她會擺姿勢， 而我會學到更多攝影。

Mom loved the process, the acting.

媽媽很愛這個過程，演戲的部分。

She felt worthy again, she felt wanted and needed.

她再次感到自己有價值， 有人想要她、需要她。

And she certainly wasn't camera-shy.

她在鏡頭前一點也不害羞。

(Laughter)

（笑聲）

(Applause)

（掌聲）

Mom laughed hysterically at this one.

拍這張時，媽媽笑到歇斯底里。

(Laughter)

（笑聲）

The idea for this image came from an old German film I'd seen,

這張影像的想法來自於 我看過的一部德國老片，

about a submarine, called "Das Boot."

《從海底出擊》， 是部關於潛水艇的電影。

As you can see, what I got instead looked more like "E.T."

你們可以看到，我拍出的結果 更像《外星人》的 E.T.。

(Laughter)

（笑聲）

So I put this image aside, thinking it was a total failure,

我把這張影像放到一邊去， 認為它完全是失敗之作，

because it didn't reach my particular vision.

因為它沒有達到 我想像中的那個樣子。

But Mom laughed so hard,

但我媽媽笑得好用力，

I eventually, for fun, decided to post it online anyway.

最終，為了好玩， 我還是決定把它放上網。

It got an incredible amount of attention.

它得到了非常大量的關注。

Now, with any Alzheimer's, dementia,

不論是阿茲海默、失智症，

there's a certain amount of frustration and sadness

任何相關的人都免不了

會有一定的挫折感和感傷。

for everyone involved.

This is Mom's silent scream.

這是媽媽的沉默尖叫。

Her words to me one day were,

有一天，她對我說的是：

"Why is my head so full of things to say,

「為什麼我的腦中滿滿都是 我想要說的東西，

but before they reach my mouth, I forget what they are?"

但它們到我的嘴巴之前， 我就已經把它們都忘了？」

"Why is my head so full of things to say,

「為什麼我的腦中滿滿都是 我想要說的東西，

but before they reach my mouth, I forget what they are?"

但它們到我的嘴巴之前， 我就已經把它們都忘了？」

(Applause)

（掌聲）

Now, as full-time care partner and full-time painter,

身為全職的照護夥伴 以及全職的畫家，

I had my frustrations too.

我也會有我的挫折感。

(Laughter)

（笑聲）

But to balance off all the difficulties, we played.

但我們會用玩樂來平衡 所有這些難處。

That was Mom's happy place.

那是我媽媽能感到快樂的地方。

And I needed her to be there, too.

我也需要她在那裡。

(Laughter)

（笑聲）

(Laughter)

（笑聲）

(Laughter)

（笑聲）

Now, Mom was also preoccupied with aging.

媽媽會一直想著「變老」這件事。

She would say, "How did I get so old, so fast?"

她會說：「我怎麼會 這麼快就變得這麼老？」

(Audience sighs)

（觀眾嘆氣）

"So old."

「這麼老。」

"So fast."

「這麼快。」

I also got Mom to model for my oil paintings.

我也讓媽媽當我油畫的模特兒。

This painting is called "The Dressmaker."

這幅畫叫做「裁縫師」。

I remember, as a kid,

我記得，我小時候，

Mom sewing clothes for the whole family

媽媽會為全家人縫衣服，

on this massive, heavy sewing machine

用的是一台又大又重的縫紉機，

that was bolted to the floor in the basement.

放在地下室，固定在地板上。

Many nights, I would go downstairs and bring my schoolwork with me.

許多晚上，我會帶著 我的學校作業下樓去。

I would sit behind her in this overstuffed chair.

我會坐在她身後一張 墊得又軟又厚的椅子上。

The low hum of the huge motor and the repetitive stitching sounds

巨大馬達的低沉嗡嗡聲， 以及不斷重覆的縫紉聲，

were comforting to me.

很能安撫我。

When Mom moved into my house,

當媽媽搬到我家來時，

I saved this machine and stored it in my studio for safekeeping.

我保存了這台機器， 把它保存在我的工作室裡。

This painting brought me back to my childhood.

這幅畫把我帶回了我的童年。

The interesting part

有趣的是，

was that it was now Mom, sitting behind me,

現在是我媽媽坐在我身後，

watching me paint her

看著我畫她，

working on that very same machine she sewed at

我現在用的就是當年 她用來縫紉的機器，

when I sat behind her, watching her sew,

只是當時是我坐在 她身後，看著她縫紉，

50 years earlier.

那是五十年前。

I also gave Mom a project to do, to keep her busy and thinking.

我也給了媽媽一個專案計畫， 讓她能有事可以忙且持續思考。

I provided her with a small camera

我給了她一台小型相機，

and asked her to take at least 10 pictures a day of anything she wanted.

要她每天至少拍十張相片， 拍任何她想拍的東西。

These are Mom's photographs.

這些是媽媽拍的照片。

She's never held a camera in her life before this.

在這之前，她從來沒有拿過相機。

She was 93.

她九十三歲。

We would sit down together and talk about our work.

我們會一起坐下來， 談論我們的作品。

I would try to explain

我會試著解釋

(Laughter)

（笑聲）

how and why I did them,

我如何／為什麼做這些作品，

the meaning, the feeling, why they were relevant.

意義是什麼、感覺是什麼、 這些有什麼重要的。

Mom, on the other hand, would just bluntly say,

另一方面，媽媽只會很直率地說：

"sì,"

「是。」

"no,"

「不。」

"bella" or "bruta."

「美麗」或「畜牲」。

(Laughter)

（笑聲）

I watched her facial expressions.

我看著她的面部表情。

She always had the last say, with words or without.

任何事最後一定由她決定， 不論是不是用言語表達。

This voyage of discovery hasn't ended with Mom.

媽媽的這項發現之旅 並沒有到此結束。

She is now in an assisted living residence,

她現在住在一間 輔助生活的療養機構，

a 10-minute walk away from my home.

離我家只要走路十分鐘。

I visit her every other day.

我每隔一天就去看她一次。

Her dementia had gotten to the point

她失智的狀況已經到了

where it was unsafe for her to be in my house.

住在我家對她來說 並不安全的程度。

It has a lot of stairs.

我家有很多樓梯。

She doesn't know my name anymore.

她也叫不出我的名字了。

(Voice breaking) But you know what? That's OK.

（聲音中斷）但， 你知道嗎？那沒關係。

She still recognizes my face

她仍然認得我的臉孔，

and always has a big smile when she sees me.

當她看到我時， 總會露出大大的微笑。

(Applause)

（掌聲）

(Applause ends)

（掌聲結束）

I don't take pictures of her anymore.

我不再拍她的照片了。

That wouldn't be fair or ethical on my part.

我這樣做是不公平或不道德的。

And she wouldn't understand the reasons for doing them.

她不會了解做這些事的理由。

My father,

我爸爸、

my brother,

我兄弟、

(Voice breaking) my nephew,

（聲音中斷）我姪子、

my partner and my best friend,

我的另一半，和我最好的朋友，

all passed away suddenly.

都突然間就過世了。

And I didn't have the chance

我沒有機會

to tell them how much I appreciated and loved them.

告訴他們我有多感謝他們、愛他們。

With Mom, I need to be there

對我媽媽，我得要在她身邊，

and make it a very long goodbye.

用很長的時間來說再見。

(Applause)

（掌聲）

(Applause ends)

（掌聲結束）

For me, it's about being present and really listening.

對我來說，重點是 要陪在身邊且能真正傾聽。

Dependents want to feel a part of something, anything.

受撫養的家屬會想要有 參與某件事，任何事的感覺。

It doesn't need to be something exceptionally profound that's shared --

與他們分享的不見得要是 特別了不起的事——

it could be as simple as walks together.

像是一起散步這麼簡單的事也可以。

Give them a voice

給他們發言權，

of interaction, participation,

讓他們互動、參與，

and a feeling of belonging.

找到歸屬感。

Make the time meaningful.

讓時間有意義。

Life, it's about wanting to live

人生，重點是想要活著，

and not waiting to die.

而不是等待死亡。

(Applause)

（掌聲）

(Applause ends)

（掌聲結束）

Can I get a wave and a smile from everyone, please?

能不能請大家對我 揮揮手，微笑一個？

(Laughter)

（笑聲）

This is for you, Mom.

這是給你的，媽媽。

(Camera clicks)

（相機快門聲）

(Applause)

（掌聲）