ABOUT THE SPEAKER
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.

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.

More profile about the speaker
Beth Malone | Speaker | TED.com
TED Residency

Beth Malone: How my dad's dementia changed my idea of death (and life)

Beth Malone: Como a demência do meu pai mudou minha ideia sobre a morte (e sobre a vida)

Filmed:
1,148,219 views

Com entusiasmo e encanto, Beth Malone nos conta uma história muito íntima sobre a luta de seu pai contra a demência frontotemporal e como ela mudou a maneira como ela pensa sobre a morte (e a vida). Uma palestra emocionante sobre o amor de uma filha, e sobre se desprender e encontrar sua paz.
- 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

Double-click the English transcript below to play the video.

00:12
I've been doing some thinking.
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Eu estive pensando.
00:16
I'm going to kill my dad.
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Vou matar meu pai.
00:19
I called my sister.
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Liguei para minha irmã.
00:20
"Listen,
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"Escuta,
00:21
I've been doing some thinking.
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eu estive pensando.
00:24
I'm going to kill Dad.
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Vou matar o papai.
00:27
I'm going to take him to Oregon,
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Vou levá-lo até Oregon,
00:30
find some heroin,
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pegar um pouco de heroína,
00:32
and give it to him."
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e dar para ele".
00:34
My dad has frontotemporal lobe dementia,
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Meu pai tem demência
frontotemporal, ou DFT.
00:36
or FTD.
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00:38
It's a confusing disease
that hits people in their 50s or 60s.
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É uma doença complexa que atinge
pessoas de 50 ou 60 anos.
00:41
It can completely change
someone's personality,
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Ela pode mudar totalmente
a personalidade de alguém,
00:44
making them paranoid and even violent.
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deixando-o paranoico e até violento.
00:47
My dad's been sick for a decade,
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Meu pai já está doente há uma década,
00:49
but three years ago he got really sick,
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mas três anos atrás ele piorou muito
00:51
and we had to move him out of his house --
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e tivemos que tirá-lo da nossa casa...
00:54
the house that I grew up in,
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a casa em que nós crescemos,
a casa que ele construíra
com suas próprias mãos.
00:56
the house that he built
with his own hands.
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00:59
My strapping, cool dad
with the falsetto singing voice
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Meu pai forte e legal
com um falsete cantante
01:04
had to move into a facility
for round-the-clock care
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teve que entrar numa instituição
com cuidados de 24h ao dia já aos 65 anos.
01:06
when he was just 65.
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01:10
At first my mom and sisters
and I made the mistake
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De início, minha mãe, eu
e minhas irmãs cometemos o erro
01:13
of putting him in a regular nursing home.
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de colocá-lo numa casa de retiro normal.
01:16
It was really pretty;
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Ela era muito bonita;
01:17
it had plush carpet
and afternoon art classes
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tinha um tapete felpudo
e aulas de arte vespertinas
01:20
and a dog named Diane.
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e uma cachorra chamada Diane.
01:23
But then I got a phone call.
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Mas aí, me ligaram.
01:26
"Ms. Malone, we've arrested your father."
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"Srta. Malone, prendemos o seu pai".
01:30
"What?"
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"Quê?"
01:32
"Well, he threatened
everybody with cutlery.
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"Ele ameaçou todo mundo com talheres.
01:36
And then he yanked
the curtains off the wall,
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Depois arrancou as cortinas das paredes,
01:39
and then he tried
to throw plants out the window.
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e tentou jogar plantas pela janela.
01:42
And then, well, he pulled all
the old ladies out of their wheelchairs."
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Por fim, ele empurrou todas as idosas
pra fora das cadeiras de rodas".
01:49
"All the old ladies?"
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"Todas as idosas?"
01:50
(Laughter)
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(Risos)
01:51
"What a cowboy."
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"Que caubói!"
01:53
(Laughter)
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(Risos)
01:54
After he got kicked out of there,
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Depois que ele foi expulso de lá,
01:56
we bounced him between
a bunch of state-run facilities
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nós o colocamos em várias
instituições federais
01:59
before finding a treatment center
specifically for people with dementia.
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até acharmos um centro de tratamento
específico para aqueles com demência.
02:03
At first, he kind of liked it,
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A princípio, ele até curtiu,
mas, com o passar do tempo,
sua saúde piorou e, um dia,
02:05
but over time his health declined,
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02:07
and one day I walked in
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eu fui até lá e o vi sentado e curvado
no chão usando um macacão...
02:08
and found him sitting hunched over
on the ground wearing a onesie --
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02:12
those kinds of outfits
that zip in the back.
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aquelas roupas com o zíper nas costas.
02:17
I watched him for about an hour
as he yanked at it,
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Por uma hora fiquei o vendo puxar
02:21
trying to find a way out of this thing.
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e tentar sair da roupa.
02:24
And it's supposed to be practical,
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Ela era para ser mais prática,
02:26
but to me it looked like a straightjacket.
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mas, pra mim, ela parecia
uma camisa de força.
02:29
And so I ran out.
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Daí, saí correndo.
02:32
I left him there.
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Deixei meu pai lá.
02:35
I sat in my truck -- his old truck --
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Sentei curvada na antiga caminhonete dele,
02:37
hunched over,
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soltando um choro gutural que saía
bem do fundo da minha barriga.
02:39
this really deep guttural cry
coming out of the pit of my belly.
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02:43
I just couldn't believe that my father,
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Não conseguia aceitar que meu pai,
02:47
the Adonis of my youth,
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o Adônis da minha juventude,
02:50
my really dear friend,
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meu querido amigo,
02:53
would think that this kind of life
was worth living anymore.
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acharia que ainda valia a pena
viver daquele jeito.
02:58
We're programmed
to prioritize productivity.
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Somos programados
a priorizar a produtividade.
03:02
So when a person --
an Adonis in this case --
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Logo, quando uma pessoa,
um Adônis nesse caso,
03:06
is no longer productive
in the way we expect him to be,
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não é mais produtivo como é esperado dele,
03:09
the way that he expects himself to be,
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ou do jeito que ele espera de si mesmo,
03:12
what value does that life have left?
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quais princípios sobraram dessa vida?
03:15
That day in the truck,
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Naquele dia, na caminhonete,
03:17
all I could imagine
was that my dad was being tortured
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tudo que eu pensava era que meu pai
estava sendo torturado
03:21
and his body was
the vessel of that torture.
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e seu corpo era um abrigo
para aquela tortura.
03:26
I've got to get him out of that body.
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Tenho que tirá-lo daquele corpo.
03:28
I've got to get him out of that body;
I'm going to kill Dad.
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Tenho que tirá-lo daquele corpo;
vou matar o meu pai.
03:32
I call my sister.
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Ligo para minha irmã:
03:35
"Beth," she said.
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"Beth", ela disse.
03:40
"You don't want
to live the rest of your life
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"Você não quer viver o resto da vida
sabendo que você matou seu pai.
03:42
knowing that you killed your father.
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03:44
And you'd be arrested I think,
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E acho que você iria presa,
pois ele não pode te absolver.
03:46
because he can't condone it.
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03:48
And you don't even know
how to buy heroin."
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E você não faz ideia
de como comprar heroína".
03:50
(Laughter)
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(Risos)
E é verdade, eu não sei.
03:51
It's true, I don't.
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03:53
(Laughter)
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(Risos)
A verdade é que falamos
muito sobre a morte dele.
03:56
The truth is we talk
about his death a lot.
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03:58
When will it happen? What will it be like?
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Quando acontecerá? Como ela será?
04:00
But I wish that we would have talked
about death when we were all healthy.
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Mas queria ter falado sobre a morte
quando estávamos todos saudáveis.
04:04
What does my best death look like?
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Como é a minha melhor morte?
04:07
What does your best death look like?
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Como é a sua melhor morte?
04:10
But my family didn't know to do that.
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Mas minha família não sabia fazer isso.
04:13
And my sister was right.
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E minha irmã estava certa.
04:15
I shouldn't murder Dad with heroin,
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Não posso matar meu pai com heroína,
04:18
but I've got to get him out of that body.
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mas tenho que tirá-lo daquele corpo.
04:22
So I went to a psychic.
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Daí, fui ver uma vidente,
04:24
And then a priest,
and then a support group,
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depois um padre e um grupo de apoio,
e todos disseram a mesma coisa:
04:26
and they all said the same thing:
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às vezes as pessoas se prendem
ao se preocupar com alguém amado.
04:28
sometimes people hang on
when they're worried about loved ones.
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Só diga que você está segura, e tudo
bem ir embora quando estiver pronta.
04:31
Just tell them you're safe,
and it's OK to go when you're ready.
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04:35
So I went to see Dad.
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Daí, fui visitar meu pai,
04:37
I found him hunched over
on the ground in the onesie.
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e o vi sentado e curvado
no chão usando o macacão.
04:40
He was staring past me
and just kind of looking at the ground.
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Ele encarava algo, meio
que olhando para o chão.
04:43
I gave him a ginger ale
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Dei um refrigerante para ele
e comecei a falar sobre nada demais,
04:44
and just started talking
about nothing in particular,
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04:47
but as I was talking,
he sneezed from the ginger ale.
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só que, enquanto eu falava,
ele espirrou por causa do refrigerante.
04:52
And the sneeze --
it jerked his body upright,
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O espirro deixou seu corpo todo ereto,
04:55
sparking him back to life a little bit.
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faiscando um pouco de vida nele.
04:57
And he just kept drinking and sneezing
and sparking, over and over and over again
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Ele continuou bebendo, espirrando
e faiscando de novo e de novo
05:02
until it stopped.
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até que parou.
05:05
And I heard,
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E eu escutei:
05:07
"Heheheheheh,
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"Hehehehehe,
05:09
heheheheheh ...
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hehehehehe...
05:12
this is so fabulous.
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isso é fabuloso.
05:15
This is so fabulous."
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Tão fabuloso".
05:18
His eyes were open
and he was looking at me,
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Seus olhos estavam abertos
e ele olhava para mim,
05:21
and I said, "Hi, Dad!"
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e eu disse: "Oi, pai!"
05:23
and he said, "Hiya, Beth."
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e ele disse, "Olá, Beth".
05:27
And I opened my mouth to tell him, right?
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Daí eu abri a boca para falar algo como:
05:29
"Dad, if you want to die, you can die.
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"Pai, se quiser morrer, pode
morrer, nós estamos bem".
05:32
We're all OK."
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05:33
But as I opened my mouth to tell him,
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Mas, assim que abri a boca para falar,
tudo que consegui dizer foi: "Pai!
05:35
all I could say was, "Dad!
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05:40
I miss you."
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Sinto sua falta".
05:42
And then he said, "Well, I miss you, too."
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E ele me disse: "Sinto sua falta também".
05:44
And then I just fell over
because I'm just a mess.
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Então, só desabei, pois eu estava acabada.
05:47
So I fell over and I sat there with him
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Caí no chão e sentei com ele,
05:52
because for the first time in a long time
he seemed kind of OK.
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pois pela primeira vez depois
de muito tempo ele parecia bem.
05:56
And I memorized his hands,
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E eu memorizei suas mãos,
05:59
feeling so grateful that his spirit
was still attached to his body.
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agradecendo muito que o espírito
dele ainda estava em seu corpo.
06:05
And in that moment I realized
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Naquele momento, eu percebi
06:08
I'm not responsible for this person.
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que não sou responsável por aquela pessoa.
06:11
I'm not his doctor,
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Não sou sua médica,
06:13
I'm not his mother,
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não sou sua mãe,
06:15
I'm certainly not his God,
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com certeza não sou seu Deus,
06:17
and maybe the best way to help him and me
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e talvez a melhor maneira
de ajudá-lo e me ajudar
06:21
is to resume our roles
as father and daughter.
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é voltar a exercer
os papéis de pai e filha.
06:25
And so we just sat there,
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Daí, ficamos só sentados lá,
06:27
calm and quiet like we've always done.
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quietos e calmos, como sempre fizemos.
06:30
Nobody was productive.
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Ninguém foi produtivo.
06:32
Both of us are still strong.
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Nós dois ainda éramos fortes.
06:37
"OK, Dad. I'm going to go,
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"Beleza, pai. Estou indo,
06:40
but I'll see you tomorrow."
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mas te vejo amanhã".
06:43
"OK," he said.
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"Beleza", ele disse.
06:46
"Hey,
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"E, ei,
06:48
this is a pretty nice hacienda."
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este sítio aqui é bem legal".
06:51
Thank you.
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Obrigada.
06:53
(Applause)
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(Aplausos)
Translated by Joao Vital Parente Correia
Reviewed by Maricene Crus

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ABOUT THE SPEAKER
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.

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.

More profile about the speaker
Beth Malone | Speaker | TED.com