TED Residency
Beth Malone: How my dad's dementia changed my idea of death (and life)
Beth Malone: Bagaimana demensia ayah saya mengubah gambaran saya tentang kematian (dan kehidupan)
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Dengan hangat dan anggun, Beth Malone menceritakan kisah pribadi yang mendalam tentang perjuangan ayahnya yang mengidap demensia frontotemporal, dan bagaimana hal itu mengubah caranya berpikir tentang kematian (dan kehidupan). Sebuah ceramah mengharukan tentang cinta seorang anak perempuan -- dan tentang mengikhlaskan dan menemukan kedamaian.
Beth Malone - Social entrepreneur, artist
TED Resident Beth Malone brings bold art to public spaces across the US, encouraging artists to have a sense of humor, to be vulnerable and take creative risks. Full bio
TED Resident Beth Malone brings bold art to public spaces across the US, encouraging artists to have a sense of humor, to be vulnerable and take creative risks. Full bio
Double-click the English transcript below to play the video.
00:12
I've been doing some thinking.
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Aku sudah lama memikirkannya,
00:16
I'm going to kill my dad.
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Aku akan membunuh ayahku.
00:19
I called my sister.
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Aku telepon saudari saya.
00:20
"Listen,
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Dengar,
00:21
I've been doing some thinking.
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aku sudah lama memikirkannya.
00:24
I'm going to kill Dad.
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Aku akan membunuh ayah.
00:27
I'm going to take him to Oregon,
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Aku akan membawanya ke Oregon,
00:30
find some heroin,
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mencari sedikit heroin,
00:32
and give it to him."
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dan memberikannya ke ayah
00:34
My dad has frontotemporal lobe dementia,
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Ayahku mengidap
demensia frontotemporal
demensia frontotemporal
00:36
or FTD.
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atau FTD.
00:38
It's a confusing disease
that hits people in their 50s or 60s.
that hits people in their 50s or 60s.
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Penyakit membingungkan
yang menimpa orang di usia 50 atau 60,
yang menimpa orang di usia 50 atau 60,
00:41
It can completely change
someone's personality,
someone's personality,
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yang dapat mengubah
kepribadian seseorang sepenuhnya,
kepribadian seseorang sepenuhnya,
00:44
making them paranoid and even violent.
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membuat mereka gelisah,
bahkan menjadi kasar.
bahkan menjadi kasar.
00:47
My dad's been sick for a decade,
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Ayahku sudah sakit selama 10 tahun,
00:49
but three years ago he got really sick,
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tapi 3 tahun lalu
sakitnya bertambah parah,
sakitnya bertambah parah,
00:51
and we had to move him out of his house --
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dan kami harus memindahkannya
keluar dari rumah --
keluar dari rumah --
00:54
the house that I grew up in,
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rumah tempatku dibesarkan,
00:56
the house that he built
with his own hands.
with his own hands.
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rumah yang ia bangun
dengan tangannya sendiri.
dengan tangannya sendiri.
00:59
My strapping, cool dad
with the falsetto singing voice
with the falsetto singing voice
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Ayahku yang tegap dan keren
dengan suaranya yang tinggi
dengan suaranya yang tinggi
01:04
had to move into a facility
for round-the-clock care
for round-the-clock care
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harus pindah ke fasilitas 24 jam
01:06
when he was just 65.
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saat dia baru berusia 65 tahun.
01:10
At first my mom and sisters
and I made the mistake
and I made the mistake
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Awalnya aku, ibuku, dan saudariku
membuat kesalahan
membuat kesalahan
01:13
of putting him in a regular nursing home.
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dengan menitipkannya
di panti jompo biasa.
di panti jompo biasa.
01:16
It was really pretty;
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Panti itu sangat cantik;
01:17
it had plush carpet
and afternoon art classes
and afternoon art classes
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memiliki karpet mewah,
dan kelas seni sore hari
dan kelas seni sore hari
01:20
and a dog named Diane.
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dan seekor anjing bernama Diane.
01:23
But then I got a phone call.
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Lalu aku mendapat telepon.
01:26
"Ms. Malone, we've arrested your father."
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"Nona Malone, kami menahan ayah Anda."
01:30
"What?"
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"Apa?"
01:32
"Well, he threatened
everybody with cutlery.
everybody with cutlery.
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Ya, dia mengancam semua orang
dengan peralatan makan.
dengan peralatan makan.
01:36
And then he yanked
the curtains off the wall,
the curtains off the wall,
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Lalu dia menarik tirai dari dinding,
01:39
and then he tried
to throw plants out the window.
to throw plants out the window.
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lalu dia mencoba melempar tanaman
keluar jendela.
keluar jendela.
01:42
And then, well, he pulled all
the old ladies out of their wheelchairs."
the old ladies out of their wheelchairs."
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Dan dia menarik semua wanita tua
dari kursi roda mereka.
dari kursi roda mereka.
01:49
"All the old ladies?"
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"Semua wanita tua?"
01:50
(Laughter)
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(Tertawa)
01:51
"What a cowboy."
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"Garang sekali."
01:53
(Laughter)
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(Tertawa)
01:54
After he got kicked out of there,
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Setelah dia diusir dari sana,
01:56
we bounced him between
a bunch of state-run facilities
a bunch of state-run facilities
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kami memindahkannya ke beberapa
fasilitas milik negara
fasilitas milik negara
01:59
before finding a treatment center
specifically for people with dementia.
specifically for people with dementia.
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sebelum menemukan pusat perawatan
khusus penderita demensia.
khusus penderita demensia.
02:03
At first, he kind of liked it,
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Awalnya, dia agak menyukainya,
02:05
but over time his health declined,
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tapi seiring waktu
kesehatannya memburuk,
kesehatannya memburuk,
02:07
and one day I walked in
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sewaktu aku mengunjunginya
02:08
and found him sitting hunched over
on the ground wearing a onesie --
on the ground wearing a onesie --
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dan menemukannya duduk membungkuk
di atas tanah mengenakan baju terusan--
di atas tanah mengenakan baju terusan--
02:12
those kinds of outfits
that zip in the back.
that zip in the back.
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jenis pakaian
dengan ritsleting di belakang.
dengan ritsleting di belakang.
02:17
I watched him for about an hour
as he yanked at it,
as he yanked at it,
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Aku memperhatikan sekitar satu jam
saat ia menariki bajunya,
saat ia menariki bajunya,
02:21
trying to find a way out of this thing.
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mencari cara untuk keluar dari benda itu.
02:24
And it's supposed to be practical,
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Seharusnya baju itu praktis,
02:26
but to me it looked like a straightjacket.
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tapi bagiku
itu terlihat seperti baju tahanan.
itu terlihat seperti baju tahanan.
02:29
And so I ran out.
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Dan aku tak tahan lagi.
02:32
I left him there.
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Aku tinggalkan dia di sana.
02:35
I sat in my truck -- his old truck --
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Aku duduk di truk --truk lamanya--
02:37
hunched over,
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membungkuk,
02:39
this really deep guttural cry
coming out of the pit of my belly.
coming out of the pit of my belly.
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tangis parau yang sangat mendalam ini
keluar dari perutku.
keluar dari perutku.
02:43
I just couldn't believe that my father,
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Aku hanya tidak percaya bahwa ayahku,
02:47
the Adonis of my youth,
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Pujaan masa mudaku,
02:50
my really dear friend,
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teman terbaikku,
02:53
would think that this kind of life
was worth living anymore.
was worth living anymore.
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akan mengira kehidupan semacam ini
layak untuk dijalani.
layak untuk dijalani.
02:58
We're programmed
to prioritize productivity.
to prioritize productivity.
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Kita diajarkan untuk
memgedepankan produktivitas.
memgedepankan produktivitas.
03:02
So when a person --
an Adonis in this case --
an Adonis in this case --
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Jadi ketika seseorang --
seorang pujaan dalam kasus ini --
seorang pujaan dalam kasus ini --
03:06
is no longer productive
in the way we expect him to be,
in the way we expect him to be,
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sudah tidak lagi produktif
seperti yang kita harapkan,
seperti yang kita harapkan,
03:09
the way that he expects himself to be,
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seperti apa yang dirinya harapkan,
03:12
what value does that life have left?
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nilai apa yang tersisa dari kehidupan itu?
03:15
That day in the truck,
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Hari itu di dalam truk,
03:17
all I could imagine
was that my dad was being tortured
was that my dad was being tortured
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yang bisa kubayangkan hanyalah
ayahku sedang disiksa
ayahku sedang disiksa
03:21
and his body was
the vessel of that torture.
the vessel of that torture.
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dan tubuhnya
adalah wadah dari penyiksaan itu.
adalah wadah dari penyiksaan itu.
03:26
I've got to get him out of that body.
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Aku harus mengeluarkannya dari tubuh itu
03:28
I've got to get him out of that body;
I'm going to kill Dad.
I'm going to kill Dad.
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Aku harus mengeluarkannya dari tubuh itu;
aku akan membunuh ayah.
aku akan membunuh ayah.
03:32
I call my sister.
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Aku telepon saudariku.
03:35
"Beth," she said.
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Dia jawab "Beth".
03:40
"You don't want
to live the rest of your life
to live the rest of your life
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Kau tidak ingin menjalani sisa hidupmu
03:42
knowing that you killed your father.
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dikenal bahwa kau membunuh ayahmu.
03:44
And you'd be arrested I think,
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Dan menurutku kau akan ditangkap,
03:46
because he can't condone it.
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karena ia tidak bisa memaafkanmu.
03:48
And you don't even know
how to buy heroin."
how to buy heroin."
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Kau bahkan tidak tahu cara membeli heroin.
03:50
(Laughter)
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(Tertawa)
03:51
It's true, I don't.
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Itu benar, aku tidak tahu.
03:53
(Laughter)
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(Tertawa)
03:56
The truth is we talk
about his death a lot.
about his death a lot.
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Kami sering membicarakan
tentang kematiannya
tentang kematiannya
03:58
When will it happen? What will it be like?
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Kapan terjadinya?
Akan seperti apa?
Akan seperti apa?
04:00
But I wish that we would have talked
about death when we were all healthy.
about death when we were all healthy.
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Tapi aku harap kami bisa membicarakan
soal kematian di saat kami semua sehat.
soal kematian di saat kami semua sehat.
04:04
What does my best death look like?
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Seperti apa kematian terbaikku?
04:07
What does your best death look like?
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Seperti apa kematian terbaikmu?
04:10
But my family didn't know to do that.
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Keluargaku pun tak tahu
cara melakukannya.
cara melakukannya.
04:13
And my sister was right.
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Dan saudariku benar.
04:15
I shouldn't murder Dad with heroin,
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Tak seharusnya aku
membunuh ayah dengan heroin,
membunuh ayah dengan heroin,
04:18
but I've got to get him out of that body.
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tapi aku harus mengeluarkannya
dari tubuh itu
dari tubuh itu
04:22
So I went to a psychic.
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Jadi aku pergi ke dukun.
04:24
And then a priest,
and then a support group,
and then a support group,
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dan ke pendeta, ke kelompok pendukung,
04:26
and they all said the same thing:
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dan semua mengatakan
hal yang sama
hal yang sama
04:28
sometimes people hang on
when they're worried about loved ones.
when they're worried about loved ones.
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terkadang seseorang bertahan
saat khawatir dengan orang tercinta
saat khawatir dengan orang tercinta
04:31
Just tell them you're safe,
and it's OK to go when you're ready.
and it's OK to go when you're ready.
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Katakan padanya bahwa kau baik-baik saja,
dan tidak apa jika dia pergi.
dan tidak apa jika dia pergi.
04:35
So I went to see Dad.
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Jadi aku pergi menemui ayah
04:37
I found him hunched over
on the ground in the onesie.
on the ground in the onesie.
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menjumpainya sedang membungkuk
memakai baju terusan.
memakai baju terusan.
04:40
He was staring past me
and just kind of looking at the ground.
and just kind of looking at the ground.
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Dia hanya melihatku sekilas
lalu menatap ke tanah,
lalu menatap ke tanah,
04:43
I gave him a ginger ale
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Aku beri dia minuman jahe
04:44
and just started talking
about nothing in particular,
about nothing in particular,
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dan mulai mengobrol basa-basi
04:47
but as I was talking,
he sneezed from the ginger ale.
he sneezed from the ginger ale.
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tapi saat aku sedang berbicara,
dia bersin dari minuman jahenya.
dia bersin dari minuman jahenya.
04:52
And the sneeze --
it jerked his body upright,
it jerked his body upright,
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Dan bersinnya --
menyentakkan tubuhnya tegak lurus
menyentakkan tubuhnya tegak lurus
04:55
sparking him back to life a little bit.
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memicunya sedikit kembali ke kehidupan.
04:57
And he just kept drinking and sneezing
and sparking, over and over and over again
and sparking, over and over and over again
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dan dia terus minum, dan bersin,
dan kembali ke kehidupan, terus menerus
dan kembali ke kehidupan, terus menerus
05:02
until it stopped.
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sampai akhirnya berhenti.
05:05
And I heard,
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Dan aku mendengar,
05:07
"Heheheheheh,
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Heheheheheh,
05:09
heheheheheh ...
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heheheheheh...
05:12
this is so fabulous.
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ini sangat menakjubkan,
05:15
This is so fabulous."
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Ini sangat menakjubkan.
05:18
His eyes were open
and he was looking at me,
and he was looking at me,
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Matanya terbuka dan dia menatapku,
05:21
and I said, "Hi, Dad!"
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dan aku berkata "Hai ayah!"
05:23
and he said, "Hiya, Beth."
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dan dia berkata, "Hiya, Beth."
05:27
And I opened my mouth to tell him, right?
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Dan aku harus mengatakannya, ya kan?
05:29
"Dad, if you want to die, you can die.
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"Ayah, tidak apa-apa
jika ayah ingin mati.
jika ayah ingin mati.
05:32
We're all OK."
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Kami baik-baik saja."
05:33
But as I opened my mouth to tell him,
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Tapi saat aku membuka mulutku,
05:35
all I could say was, "Dad!
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yang bisa kuucapkan hanyalah,
"Ayah!
"Ayah!
05:40
I miss you."
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Aku merindukanmu."
05:42
And then he said, "Well, I miss you, too."
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Lalu dia berkata,
"Ya, aku juga merindukanmu."
"Ya, aku juga merindukanmu."
05:44
And then I just fell over
because I'm just a mess.
because I'm just a mess.
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Dan kemudian aku terjatuh,
karena aku sangat kalut.
karena aku sangat kalut.
05:47
So I fell over and I sat there with him
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Jadi aku terjatuh,
dan duduk di sana bersamanya
dan duduk di sana bersamanya
05:52
because for the first time in a long time
he seemed kind of OK.
he seemed kind of OK.
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karena untuk pertama kalinya,
dia terlihat baik-baik saja.
dia terlihat baik-baik saja.
05:56
And I memorized his hands,
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Dan aku merasakan tangannya,
05:59
feeling so grateful that his spirit
was still attached to his body.
was still attached to his body.
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merasa sangat bersyukur bahwa jiwanya
masih melekat pada tubuhnya.
masih melekat pada tubuhnya.
06:05
And in that moment I realized
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Dan pada momen itu aku sadar
06:08
I'm not responsible for this person.
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Aku tidak bertanggung jawab
atas ayahku.
atas ayahku.
06:11
I'm not his doctor,
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Aku bukan dokternya,
06:13
I'm not his mother,
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aku bukan ibunya,
06:15
I'm certainly not his God,
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dan sudah tentu aku bukan Tuhannya,
06:17
and maybe the best way to help him and me
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dan mungkin,
cara terbaik untuk kami berdua
cara terbaik untuk kami berdua
06:21
is to resume our roles
as father and daughter.
as father and daughter.
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adalah dengan melanjutkan peran kami
sebagai ayah dan anak.
sebagai ayah dan anak.
06:25
And so we just sat there,
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Akhirnya kami hanya duduk,
06:27
calm and quiet like we've always done.
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tenang dan sunyi
seperti yang selalu kami lakukan.
seperti yang selalu kami lakukan.
06:30
Nobody was productive.
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Tidak melakukan apa pun.
06:32
Both of us are still strong.
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Kami berdua masih tetap kuat.
06:37
"OK, Dad. I'm going to go,
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"OK ayah, aku akan pergi,
06:40
but I'll see you tomorrow."
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tapi aku akan datang lagi besok."
06:43
"OK," he said.
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"OK", katanya.
06:46
"Hey,
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"Hei,
06:48
this is a pretty nice hacienda."
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tempat ini cukup bagus."
06:51
Thank you.
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Terima kasih.
06:53
(Applause)
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(Tepuk tangan)
ABOUT THE SPEAKER
Beth Malone - Social entrepreneur, artistTED Resident Beth Malone brings bold art to public spaces across the US, encouraging artists to have a sense of humor, to be vulnerable and take creative risks.
Why you should listen
Beth Malone is executive director and partner at Dashboard US, an award-winning, experimental creative agency. Dashboard has presented exhibitions and special artist projects in cities around the country including New York, New Orleans, Atlanta, and Detroit. Dashboard has commissioned new, nontraditional works from over 200 artists.
Malone encourages artists to have a sense of humor, to be vulnerable and take creative risks, a practice she employed for herself when processing illness, caretaking and death. In 2014, she and her dad were sitting on a couch in a psychiatric hospital in Atlanta, GA. He looked at her and said, "I’m gonna be lost after this. After this, I’m gonna be gone." In August 2017, her dad passed away from frontotemporal lobe dementia -- just two months after she gave her TED Talk. It was a good death.
Beth Malone | Speaker | TED.com