TEDxCambridge
Tony Luciani: A mother and son's photographic journey through dementia
Tony Luciani: Perjalanan fotografi ibu dan anak melalui demensia
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Pelukis Tony Luciani sedang menguji kamera barunya ketika ibunya, Elia, yang berumur 91 tahun muncul dalam latar belakang fotonya. Gambar yang spontan itu kemudian mencetuskan kolaborasi bertahun-tahun, dengan Luciani mendokumentasikan kehidupan dan semangat ibunya yang hidup dengan demensia. Dalam percakapannya yang menyentuh ini, ia bercerita tentang asal usul dari foto favoritnya, yang menangkap suka dan duka dari kepedulian terhadap orang tua yang menua.
Tony Luciani - Artist
Tony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, beginning a four-year-long voyage of discovery. Full bio
Tony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, beginning a four-year-long voyage of discovery. Full bio
Double-click the English transcript below to play the video.
00:13
When my 91-year-old mother, Elia,
moved in with me,
moved in with me,
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Ketika ibu saya, Elia, berumur 91 tahun,
tinggal bersama saya,
tinggal bersama saya,
00:17
I thought I was doing her a service.
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Saya mengira saya melayani dia.
00:20
In fact, it was the other way around.
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Faktanya, yang terjadi adalah sebaliknya.
00:23
You see, Mom was having issues
with memory loss and accepting her age.
with memory loss and accepting her age.
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Ibu mengalami masalah dengan ingatannya
dan juga dalam menerima umurnya.
dan juga dalam menerima umurnya.
00:29
She looked defeated.
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Dia terlihat seperti orang yang kalah.
00:31
I tried to make her
as comfortable as possible,
as comfortable as possible,
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Saya mencoba untuk membuatnya
senyaman mungkin,
senyaman mungkin,
00:35
but when I was at my easel, painting,
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tetapi ketika saya melukis,
00:37
I would peek over
and see her just ... there.
and see her just ... there.
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saya akan mengintip dan mengamati
bahwa dia hanya berada ... di sana.
bahwa dia hanya berada ... di sana.
00:41
She'd be staring at nothing in particular.
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Dia menatap ruang kosong.
00:45
I'd watch her slowly climb the stairs,
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Saya melihatnya menaiki
anak tangga dengan perlahan,
anak tangga dengan perlahan,
00:49
and she wasn't the mom I grew up with.
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dia tidak terlihat seperti
ibu saya yang dulu.
ibu saya yang dulu.
00:52
I saw, instead, a frail,
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Saya melihat seorang wanita
00:55
tiny, old woman.
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yang lemah dan ringkih.
01:01
A few weeks went by,
and I needed a break from my painting.
and I needed a break from my painting.
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Beberapa minggu berlalu, dan saya
membutuhkan istirahat dari melukis.
membutuhkan istirahat dari melukis.
01:04
I wanted to play with the new camera
I had just bought.
I had just bought.
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Saya ingin mencoba kamera
yang baru saja saya beli.
yang baru saja saya beli.
01:07
I was excited --
it had all sorts of dials,
it had all sorts of dials,
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Saya sangat gembira --
kamera itu memiliki banyak tombol,
kamera itu memiliki banyak tombol,
01:10
buttons and settings I wanted to learn,
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dan pengaturan yang ingin saya pelajari,
01:13
so I set up my tripod
facing this large mirror,
facing this large mirror,
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jadi saya mempersiapkan tripod saya
menghadap cermin besar,
menghadap cermin besar,
01:18
blocking the doorway
to the only bathroom in the house.
to the only bathroom in the house.
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menghalangi jalan masuk kamar mandi
satu-satunya di rumah.
satu-satunya di rumah.
01:23
(Laughter)
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(Tertawa)
01:25
After a while, I hear,
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Sesaat kemudian, saya mendengar,
01:29
(Imitating Italian accent)
"I need to use the washroom."
"I need to use the washroom."
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(Meniru logat Italia)
"Saya butuh ke kamar mandi."
"Saya butuh ke kamar mandi."
01:31
(Laughter)
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(Tertawa)
01:32
"Five minutes, Mom. I need to do this."
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"5 menit, Bu. Saya harus melakukan ini."
01:36
15 minutes later, and I hear, again,
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15 menit kemudian,
dan saya kembali mendengar,
dan saya kembali mendengar,
01:42
"I need to use the washroom."
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"Saya butuh ke kamar mandi."
01:45
"Five more minutes."
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"5 menit lagi."
01:47
Then this happened.
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Kemudian ini terjadi.
01:53
(Laughter)
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(Tertawa)
01:57
(Applause)
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(Tepuk Tangan)
02:05
And this.
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Dan ini.
02:09
(Laughter)
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(Tertawa)
02:14
And then, this.
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Dan kemudian, ini.
02:19
(Laughter)
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(Tertawa)
02:25
I had my "aha!" moment.
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Saya mendapat pencerahan.
02:29
We connected.
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Kami terhubung.
02:30
We had something tangible
we could do together.
we could do together.
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Kami memiliki sesuatu yang nyata
dan dapat kami lakukan bersama.
dan dapat kami lakukan bersama.
02:36
My mom was born in a small
mountain village in central Italy,
mountain village in central Italy,
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Ibu saya lahir di sebuah desa
di pegunungan di tengah Italia,
di pegunungan di tengah Italia,
02:41
where her parents had land and sheep.
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di mana orang tuanya
memiliki tanah dan domba.
memiliki tanah dan domba.
02:44
At a young age,
her father died of pneumonia,
her father died of pneumonia,
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Di umurnya yang masih muda,
ayahnya meninggal karena pneumonia,
ayahnya meninggal karena pneumonia,
02:47
leaving his wife and two daughters alone
with all the heavy chores.
with all the heavy chores.
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meninggalkan istri dan dua anak perempuan
dengan tugas yang berat.
dengan tugas yang berat.
02:53
They found that they couldn't cope.
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Mereka tidak dapat mengatasinya.
02:56
So a very hard decision was made.
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Sehingga sebuah keputusan berat diambil.
02:59
Mom, the oldest, at 13,
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Ibu, anak yang paling tua, berumur 13,
03:02
was married off to a complete
stranger twice her age.
stranger twice her age.
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dinikahkan dengan orang asing
berumur dua kalinya.
berumur dua kalinya.
03:08
She went from being just a kid
and was pushed into adulthood.
and was pushed into adulthood.
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Dia hanya anak kecil dan mendadak
dipaksa menjadi dewasa.
dipaksa menjadi dewasa.
03:14
Mom had her first child
when she was only 16.
when she was only 16.
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Dia memiliki anak pertama
ketika dia baru berumur 16.
ketika dia baru berumur 16.
03:20
Years later, and now living in Toronto,
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Beberapa tahun kemudian
ia tinggal di Toronto,
ia tinggal di Toronto,
03:23
Mom got work in a clothing factory
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ibu bekerja di pabrik pakaian
03:26
and soon became manager
of a very large sewing department.
of a very large sewing department.
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dan kemudian menjadi manajer dari
departemen jahit yang sangat ramai.
departemen jahit yang sangat ramai.
03:31
And because it was full
of immigrant workers,
of immigrant workers,
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Karena dipenuhi oleh pekerja imigran,
03:34
Mom taught herself words
from translation books.
from translation books.
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ibu mengajari dirinya sendiri bahasa asing
dari buku terjemahan.
dari buku terjemahan.
03:38
She then practiced them in French,
Greek, Spanish, Portuguese, Danish,
Greek, Spanish, Portuguese, Danish,
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Dia berlatih bahasa Perancis, Yunani,
Spanyol, Portugis, Denmark,
Spanyol, Portugis, Denmark,
03:42
Polish, Russian, Romanian, Hungarian,
all around the house.
all around the house.
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Polandia, Rusia, Romania, Hungaria,
semuanya saat di rumah.
semuanya saat di rumah.
03:47
I was in awe of her focus
and determination to succeed
and determination to succeed
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Saya kagum dengan fokus dan
tekadnya untuk sukses
tekadnya untuk sukses
03:53
at whatever she loved to do.
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dalam apapun yang ia senang lakukan.
03:56
After that bathroom "aha!" moment,
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Setelah momen pencerahan
di kamar mandi itu,
di kamar mandi itu,
03:59
I practiced my newfound camera skills
with Mom as portrait model.
with Mom as portrait model.
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saya berlatih kamera dengan
ibu sebagai model potret.
ibu sebagai model potret.
04:05
Through all of this,
she talked, and I listened.
she talked, and I listened.
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Ketika melakukannya, ia berbicara,
dan saya mendengar.
dan saya mendengar.
04:08
She'd tell me about her early childhood
and how she was feeling now.
and how she was feeling now.
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Dia bercerita bagaimana masa kecilnya
dan bagaimana perasaannya sekarang.
dan bagaimana perasaannya sekarang.
04:13
We had each other's attention.
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Kami saling memperhatikan.
04:17
Mom was losing her short-term memory,
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Ibu kehilangan memori jangka pendeknya,
04:19
but was better recalling
her younger years.
her younger years.
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namun lebih baik dalam mengingat
masa mudanya.
masa mudanya.
04:23
I'd ask, and she would tell me stories.
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Saya akan bertanya, dan dia bercerita.
04:25
I listened, and I was her audience.
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Saya mendengarnya, dan saya
adalah penontonnya.
adalah penontonnya.
04:29
I got ideas.
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Saya mendapatkan ide.
04:31
I wrote them down,
and I sketched them out.
and I sketched them out.
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Saya menulisnya kemudian,
dan menggambar sketsanya.
dan menggambar sketsanya.
04:34
I showed her what to do
by acting out the scenarios myself.
by acting out the scenarios myself.
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Saya akan menunjukkan apa yang dilakukan
dengan memperagakannya langsung.
dengan memperagakannya langsung.
04:40
We would then stage them.
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Kami kemudian akan mempersiapkannya.
04:42
So she posed, and I learned
more about photography.
more about photography.
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Dia berpose, dan saya semakin
banyak belajar mengenai fotografi.
banyak belajar mengenai fotografi.
04:48
Mom loved the process, the acting.
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Ibu mencintai prosesnya, aktingnya.
04:53
She felt worthy again,
she felt wanted and needed.
she felt wanted and needed.
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Dia merasa kembali berarti,
dia merasa diinginkan dan dibutuhkan.
dia merasa diinginkan dan dibutuhkan.
Dia tidak malu berada
di depan kamera.
di depan kamera.
04:58
And she certainly wasn't camera-shy.
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05:00
(Laughter)
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(Tertawa)
05:04
(Applause)
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(Tepuk Tangan)
05:12
Mom laughed hysterically at this one.
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Ibu tertawa histeris untuk yang satu ini.
05:16
(Laughter)
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(Tertawa)
05:19
The idea for this image
came from an old German film I'd seen,
came from an old German film I'd seen,
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Ide gambar ini datang dari film tua Jerman
yang pernah saya tonton,
yang pernah saya tonton,
05:23
about a submarine, called "Das Boot."
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tentang sebuah kapal selam,
berjudul "Das Boot."
berjudul "Das Boot."
05:26
As you can see, what I got instead
looked more like "E.T."
looked more like "E.T."
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Seperti yang dapat dilihat,
itu lebih terlihat seperti "E.T."
itu lebih terlihat seperti "E.T."
05:30
(Laughter)
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(Tertawa)
05:32
So I put this image aside,
thinking it was a total failure,
thinking it was a total failure,
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Jadi saya mengesampingkannya,
berpikir itu sebuah kegagalan,
berpikir itu sebuah kegagalan,
05:35
because it didn't reach
my particular vision.
my particular vision.
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karena tidak mencapai bayangan saya.
05:38
But Mom laughed so hard,
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Namun ibu tertawa dengan keras,
05:41
I eventually, for fun,
decided to post it online anyway.
decided to post it online anyway.
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Saya pada akhirnya, untuk kesenangan,
memutuskan untuk mempostingnya daring.
memutuskan untuk mempostingnya daring.
05:47
It got an incredible amount of attention.
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Foto itu mendapat perhatian
yang sangat luar biasa.
yang sangat luar biasa.
05:51
Now, with any Alzheimer's, dementia,
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Sekarang, dengan datangnya
penyakit alzhemier, dementia,
penyakit alzhemier, dementia,
05:56
there's a certain amount
of frustration and sadness
of frustration and sadness
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muncul perasaan frustasi dan kesedihan
05:59
for everyone involved.
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bagi semua yang terlibat.
06:02
This is Mom's silent scream.
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Ini adalah teriakan sunyi ibu.
06:06
Her words to me one day were,
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Ibu pernah berkata padaku suatu hari,
06:08
"Why is my head so full of things to say,
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"Mengapa kepalaku penuh dengan
ucapan yang ingin kusampaikan,
ucapan yang ingin kusampaikan,
06:12
but before they reach my mouth,
I forget what they are?"
I forget what they are?"
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namun sebelum mencapai mulut,
aku lupa apa yang ingin kusampaikan?"
aku lupa apa yang ingin kusampaikan?"
06:20
"Why is my head so full of things to say,
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"Mengapa kepalaku penuh dengan
ucapan yang ingin kusampaikan,
ucapan yang ingin kusampaikan,
06:27
but before they reach my mouth,
I forget what they are?"
I forget what they are?"
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namun sebelum mencapai mulut,
aku lupa apa yang ingin kusampaikan?"
aku lupa apa yang ingin kusampaikan?"
06:33
(Applause)
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(Tepuk tangan)
06:44
Now, as full-time care partner
and full-time painter,
and full-time painter,
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Sekarang, menjadi pengasuh penuh waktu
dan pelukis penuh waktu,
dan pelukis penuh waktu,
06:49
I had my frustrations too.
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Saya juga memiliki rasa frustasi.
06:53
(Laughter)
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(Tertawa)
06:55
But to balance off
all the difficulties, we played.
all the difficulties, we played.
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Tapi untuk menyeimbangkan seluruh
kesulitannya, kami bermain.
kesulitannya, kami bermain.
06:58
That was Mom's happy place.
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Itu merupakan tempat kebahagiaan ibu.
07:01
And I needed her to be there, too.
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Dan saya juga membutuhkan
dia untuk ada di sana.
dia untuk ada di sana.
07:05
(Laughter)
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(Tertawa)
07:10
(Laughter)
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(Tertawa)
07:15
(Laughter)
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(Tertawa)
07:19
Now, Mom was also preoccupied with aging.
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Sekarang, ibu disibukkan oleh penuaan.
07:22
She would say,
"How did I get so old, so fast?"
"How did I get so old, so fast?"
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Dia akan berkata, "Bagaimana aku
bisa cepat bertambah tua?"
bisa cepat bertambah tua?"
07:29
(Audience sighs)
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(Penonton mendesau)
07:41
"So old."
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"Sangat tua."
07:48
"So fast."
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"Sangat cepat."
07:53
I also got Mom to model
for my oil paintings.
for my oil paintings.
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Saya juga meminta ibu untuk menjadi
model lukisan cat minyak saya.
model lukisan cat minyak saya.
07:57
This painting is called "The Dressmaker."
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Lukisan ini berjudul "The Dressmaker."
("Penjahit")
("Penjahit")
08:02
I remember, as a kid,
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Saya ingat, ketika saya masih kecil,
08:05
Mom sewing clothes for the whole family
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Ibu menjahit pakaian untuk
seluruh anggota keluarga
seluruh anggota keluarga
08:07
on this massive, heavy sewing machine
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pada mesin jahit yang berat dan besar ini
08:11
that was bolted
to the floor in the basement.
to the floor in the basement.
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yang dikunci di lantai dasar rumah.
08:15
Many nights, I would go downstairs
and bring my schoolwork with me.
and bring my schoolwork with me.
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Banyak malam saya akan menuruni tangga
dan membawa tugas sekolah saya.
dan membawa tugas sekolah saya.
08:20
I would sit behind her
in this overstuffed chair.
in this overstuffed chair.
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Saya akan duduk di belakangnya
di kursi empuk ini.
di kursi empuk ini.
08:25
The low hum of the huge motor
and the repetitive stitching sounds
and the repetitive stitching sounds
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Dengungan pelan dari mesin dan
suara mesin jahit yang berulang
suara mesin jahit yang berulang
08:30
were comforting to me.
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menenangkan saya.
08:33
When Mom moved into my house,
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Ketika ibu pindah ke rumah saya,
08:35
I saved this machine and stored it
in my studio for safekeeping.
in my studio for safekeeping.
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saya menyimpan mesin ini
di studio saya untuk diamankan.
di studio saya untuk diamankan.
08:40
This painting brought me
back to my childhood.
back to my childhood.
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Lukisan ini membawa saya kembali
ke masa kanak-kanak.
ke masa kanak-kanak.
08:44
The interesting part
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Bagian menariknya ialah
08:46
was that it was now Mom,
sitting behind me,
sitting behind me,
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sekarang ibu yang duduk di belakang saya,
08:51
watching me paint her
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melihat saya melukis dirinya
08:53
working on that very same
machine she sewed at
machine she sewed at
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bekerja di mesin jahit yang sama
08:57
when I sat behind her, watching her sew,
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ketika saya duduk di belakangnya,
melihat dia menjahit,
melihat dia menjahit,
09:01
50 years earlier.
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50 tahun yang lalu.
09:07
I also gave Mom a project to do,
to keep her busy and thinking.
to keep her busy and thinking.
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Saya memberinya tugas untuk dilakukan,
agar tetap sibuk dan tetap berpikir.
agar tetap sibuk dan tetap berpikir.
09:11
I provided her with a small camera
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Saya memberinya kamera sederhana
09:14
and asked her to take at least
10 pictures a day of anything she wanted.
10 pictures a day of anything she wanted.
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dan memintanya untuk mengambil setidaknya
10 gambar setiap harinya mengenai apapun.
10 gambar setiap harinya mengenai apapun.
09:18
These are Mom's photographs.
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Ini adalah foto yang diambil oleh ibu.
09:21
She's never held a camera
in her life before this.
in her life before this.
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Dia tidak pernah menggunakan
kamera sebelumnya.
kamera sebelumnya.
09:25
She was 93.
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Dia berumur 93 tahun.
09:53
We would sit down together
and talk about our work.
and talk about our work.
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Kita akan duduk bersama dan
membicarakan pekerjaan kita.
membicarakan pekerjaan kita.
09:57
I would try to explain
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Saya akan mencoba menjelaskannya
09:58
(Laughter)
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(Tertawa)
10:00
how and why I did them,
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bagaimana dan mengapa saya melakukannya,
10:03
the meaning, the feeling,
why they were relevant.
why they were relevant.
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maknanya, perasaannya,
mengapa mereka relevan.
mengapa mereka relevan.
10:07
Mom, on the other hand,
would just bluntly say,
would just bluntly say,
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Ibu, di lain sisi, hanya akan berkata,
10:10
"sì,"
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"ya,"
10:12
"no,"
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"tidak,"
10:13
"bella" or "bruta."
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"bagus" atau "buruk."
10:15
(Laughter)
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(Tertawa)
10:17
I watched her facial expressions.
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Saya memperhatikan raut wajahnya.
10:21
She always had the last say,
with words or without.
with words or without.
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Dia selalu yang terakhir mengucap,
dengan atau tanpa kata.
dengan atau tanpa kata.
10:28
This voyage of discovery
hasn't ended with Mom.
hasn't ended with Mom.
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Perjalanan penemuan dengan
ibu belum berakhir.
ibu belum berakhir.
10:33
She is now in an assisted
living residence,
living residence,
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Dia kini tinggal di tempat tinggal
yang berkebutuhan khusus,
yang berkebutuhan khusus,
10:37
a 10-minute walk away from my home.
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10 menit jalan kaki dari rumah saya.
10:41
I visit her every other day.
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Saya mengunjunginya setiap hari.
10:45
Her dementia had gotten to the point
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Demensianya sudah mencapai tahap
10:47
where it was unsafe for her
to be in my house.
to be in my house.
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di mana dia tidak aman untuk
berada di rumah saya.
berada di rumah saya.
10:50
It has a lot of stairs.
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Banyak tangga di dalamnya.
10:54
She doesn't know my name anymore.
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Dia tidak tahu nama saya lagi.
10:58
(Voice breaking)
But you know what? That's OK.
But you know what? That's OK.
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Tapi Anda tahu? Itu tidak masalah.
11:02
She still recognizes my face
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Dia masih mengenali wajah saya
11:05
and always has a big smile
when she sees me.
when she sees me.
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dan selalu tersenyum lebar
saat melihat saya.
saat melihat saya.
11:10
(Applause)
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(Tepuk tangan)
11:23
(Applause ends)
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(Tepuk tangan selesai)
11:25
I don't take pictures of her anymore.
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Saya tidak mengambil gambarnya lagi.
11:28
That wouldn't be fair
or ethical on my part.
or ethical on my part.
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Itu tidak adil dan etis bagi saya.
11:32
And she wouldn't understand
the reasons for doing them.
the reasons for doing them.
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Dia tidak mengerti alasan
untuk melakukannya.
untuk melakukannya.
11:36
My father,
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Ayah saya,
11:38
my brother,
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saudara saya,
11:40
(Voice breaking) my nephew,
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keponakan saya,
11:46
my partner and my best friend,
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partner saya dan teman baik saya,
11:49
all passed away suddenly.
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semua meninggal secara mendadak.
11:51
And I didn't have the chance
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Dan saya tidak mendapat kesempatan
11:54
to tell them how much
I appreciated and loved them.
I appreciated and loved them.
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untuk memberitahu mereka betapa
saya menghargai dan mencintai mereka.
saya menghargai dan mencintai mereka.
11:58
With Mom, I need to be there
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Untuk ibu, saya butuh untuk berada di sana
12:02
and make it a very long goodbye.
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dan membuatnya sebagai perpisahan
yang sangat amat panjang
yang sangat amat panjang
12:09
(Applause)
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(Tepuk tangan)
12:20
(Applause ends)
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(Tepuk tangan selesai)
12:22
For me, it's about being present
and really listening.
and really listening.
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Bagi saya, itu semua tentang hadir dan
benar-benar mendengar.
benar-benar mendengar.
12:27
Dependents want to feel
a part of something, anything.
a part of something, anything.
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Ingin merasa menjadi bagian
dari sesuatu, apapun itu.
dari sesuatu, apapun itu.
12:30
It doesn't need to be something
exceptionally profound that's shared --
exceptionally profound that's shared --
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Itu tidak harus sesuatu yang
sangat penting --
sangat penting --
12:35
it could be as simple as walks together.
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itu dapat sesederhana berjalan bersama.
12:38
Give them a voice
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Berikan mereka suara
12:41
of interaction, participation,
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dari interaksi, partisipasi,
12:44
and a feeling of belonging.
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dan sebuah perasaan kepemilikan.
12:48
Make the time meaningful.
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Buatlah waktu berarti.
12:52
Life, it's about wanting to live
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Kehidupan, adalah tentang
keinginan untuk hidup
keinginan untuk hidup
12:56
and not waiting to die.
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dan bukan menunggu ajal menjemput.
13:01
(Applause)
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(Tepuk tangan)
13:11
(Applause ends)
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(Tepuk tangan selesai)
13:14
Can I get a wave and a smile
from everyone, please?
from everyone, please?
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Bisakah saya mendapat lambaian dan
senyuman dari semua orang, tolong?
senyuman dari semua orang, tolong?
13:18
(Laughter)
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(Tertawa)
13:20
This is for you, Mom.
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Ini untukmu, bu.
13:23
(Camera clicks)
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(Kamera klik)
13:25
(Applause)
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(Tepuk tangan)
ABOUT THE SPEAKER
Tony Luciani - ArtistTony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, beginning a four-year-long voyage of discovery.
Why you should listen
Tony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, and it was the imaginative expression of the collaboration that propelled his work internationally. After more than 40 years as a full-time painter, Luciani garnered worldwide attention with this four-year-long photography series. Their voyage of discovery, expressing the benefits of inclusion and participation within a creative medium, has gone beyond the boundaries of recognizing it as just a personal visual diary.
Luciani graduated from Toronto's Ontario College of Art in 1977 with prestigious honors. At age 21, he was encouraged to continue with his fifth-year post-graduate study in Florence, Italy. It was there that he found maturity while carefully observing the historical paintings of the Renaissance Masters. Upon returning, he was promptly accepted for representation by a well-respected and established Canadian art gallery.
In defining his work, Luciani prefers to be placed in a tradition of realism, which is both interpretive and characterized by focused observation. As a photographer, he likes defining his imagery as an "obvious extension" to what he already creates as an artist.
Luciani's art can be found in private, public and corporate collections globally. An unabridged edition of one-hundred photographs titled "MAMMA, In the Meantime" is in the collection of the local chapter of the Canadian Alzheimer Society. He is represented by Loch Gallery in Toronto, Winnipeg and Calgary.
Tony Luciani | Speaker | TED.com