TED Residency
Beth Malone: How my dad's dementia changed my idea of death (and life)
Bet Maloun (Beth Malone): Kako je demencija mog tate promenila moju predstavu o smrti i životu
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Sa toplinom i blagošću Bet Maloun priča duboko ličnu priču o borbi svog oca sa frontotemporalnom demencijom i o tome kako je ona promenila njen način razmišljanja o smrti i životu. Dirljiv govor o ljubavi ćerke, prihvatanju i nalaženju mira.
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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Razmišljala sam.
00:16
I'm going to kill my dad.
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Ubiću svog tatu.
00:19
I called my sister.
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Pozvala sam sestru.
00:20
"Listen,
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„Slušaj.
00:21
I've been doing some thinking.
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Razmišljala sam.
00:24
I'm going to kill Dad.
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Ubiću tatu.
00:27
I'm going to take him to Oregon,
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Odvešću ga u Oregon,
00:30
find some heroin,
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naći ću heroin
00:32
and give it to him."
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i daću mu ga.“
00:34
My dad has frontotemporal lobe dementia,
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Moj tata ima frontotemporalnu demenciju,
00:36
or FTD.
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ili FTD.
To je zbunjujuća bolest koja pogađa ljude
u 50-im ili 60-im godinama.
u 50-im ili 60-im godinama.
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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00:41
It can completely change
someone's personality,
someone's personality,
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Može u potpunosti promeniti ličnost osobe,
00:44
making them paranoid and even violent.
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učinivši je paranoidnom, čak i nasilnom.
Moj tata je bio bolestan čitavu deceniju,
00:47
My dad's been sick for a decade,
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00:49
but three years ago he got really sick,
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ali se pre tri godine baš razboleo
00:51
and we had to move him out of his house --
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i morali smo da ga iselimo
iz njegove kuće -
iz njegove kuće -
00:54
the house that I grew up in,
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kuće u kojoj sam odrasla,
00:56
the house that he built
with his own hands.
with his own hands.
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kuće koju je izgradio svojim rukama.
00:59
My strapping, cool dad
with the falsetto singing voice
with the falsetto singing voice
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Moj snažni, kul tata sa glasom u falsetu
01:04
had to move into a facility
for round-the-clock care
for round-the-clock care
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morao je da se preseli
u ustanovu za danonoćnu negu
u ustanovu za danonoćnu negu
01:06
when he was just 65.
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kada je imao svega 65 godina.
01:10
At first my mom and sisters
and I made the mistake
and I made the mistake
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Najpre smo moja mama i sestre
napravile grešku
napravile grešku
01:13
of putting him in a regular nursing home.
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i smestile ga u običan starački dom.
01:16
It was really pretty;
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Bilo je veoma lepo;
01:17
it had plush carpet
and afternoon art classes
and afternoon art classes
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imao je plišane tepihe,
popodnevne časove umetnosti
popodnevne časove umetnosti
01:20
and a dog named Diane.
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i psa po imenu Dajana.
01:23
But then I got a phone call.
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Ali, onda sam dobila telefonski poziv.
01:26
"Ms. Malone, we've arrested your father."
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„Gospođice Maloun,
uhapsili smo vašeg oca.“
uhapsili smo vašeg oca.“
01:30
"What?"
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„Šta?“
01:32
"Well, he threatened
everybody with cutlery.
everybody with cutlery.
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„Pa, svima je pretio priborom za jelo.
01:36
And then he yanked
the curtains off the wall,
the curtains off the wall,
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Zatim je istrgao zavese sa zidova,
01:39
and then he tried
to throw plants out the window.
to throw plants out the window.
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a onda je pokušao
da baci biljke kroz prozor.
da baci biljke kroz prozor.
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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A potom, pa, izvukao
je sve starice iz kolica.“
je sve starice iz kolica.“
01:49
"All the old ladies?"
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„Sve starice?“
01:50
(Laughter)
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(Smeh)
01:51
"What a cowboy."
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„Kakav kauboj.“
01:53
(Laughter)
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(Smeh)
01:54
After he got kicked out of there,
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Nakon što su ga izbacili odatle,
01:56
we bounced him between
a bunch of state-run facilities
a bunch of state-run facilities
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prebacivale smo ga više puta
u gomilu državnih ustanova
u gomilu državnih ustanova
01:59
before finding a treatment center
specifically for people with dementia.
specifically for people with dementia.
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dok nismo našle centar za lečenje
posebno namenjen ljudima sa demencijom.
posebno namenjen ljudima sa demencijom.
02:03
At first, he kind of liked it,
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U početku nam se dopao,
ali je vremenom njegovo zdravlje oslabilo
02:05
but over time his health declined,
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02:07
and one day I walked in
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i jednog dana sam ušla
02:08
and found him sitting hunched over
on the ground wearing a onesie --
on the ground wearing a onesie --
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i pronašla ga kako sedi zgrčen na zemlji
dok je nosio kombinezon -
dok je nosio kombinezon -
02:12
those kinds of outfits
that zip in the back.
that zip in the back.
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ona odela koja se zatvaraju
rajsferšlusom pozadi.
rajsferšlusom pozadi.
02:17
I watched him for about an hour
as he yanked at it,
as he yanked at it,
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Posmatrala sam ga
oko sat vremena dok ga je vukao,
oko sat vremena dok ga je vukao,
02:21
trying to find a way out of this thing.
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pokušavajući da se izvuče iz toga.
02:24
And it's supposed to be practical,
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Trebalo bi da bude praktično,
02:26
but to me it looked like a straightjacket.
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ali meni je izgledalo kao ludačka košulja.
02:29
And so I ran out.
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Zato sam istrčala.
02:32
I left him there.
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Ostavila sam ga tamo.
Sedela sam u svom kamionu -
njegovom starom kamionu, pogurena,
njegovom starom kamionu, pogurena,
02:35
I sat in my truck -- his old truck --
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02:37
hunched over,
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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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dok je duboki grleni vapaj
dopirao iz moje stomačne duplje.
dopirao iz moje stomačne duplje.
02:43
I just couldn't believe that my father,
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Jednostavno nisam mogla
da poverujem da bi moj otac,
da poverujem da bi moj otac,
02:47
the Adonis of my youth,
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Adonis moje mladosti,
02:50
my really dear friend,
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moj veoma dragi prijatelj,
02:53
would think that this kind of life
was worth living anymore.
was worth living anymore.
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smatrao da je ovakav život
više vredan življenja.
više vredan življenja.
02:58
We're programmed
to prioritize productivity.
to prioritize productivity.
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Programirani smo da dajemo
prioritet produktivnosti.
prioritet produktivnosti.
03:02
So when a person --
an Adonis in this case --
an Adonis in this case --
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Zato kada osoba - Adonis u ovom slučaju -
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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više nije produktivna
onako kako to očekujemo od nje,
onako kako to očekujemo od nje,
03:09
the way that he expects himself to be,
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onako kako ona očekuje od sebe,
03:12
what value does that life have left?
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kakva vrednost preostaje tom životu?
03:15
That day in the truck,
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Tog dana u kamionu
03:17
all I could imagine
was that my dad was being tortured
was that my dad was being tortured
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jedino o čemu sam mogla da mislim
jeste da se moj tata muči
jeste da se moj tata muči
03:21
and his body was
the vessel of that torture.
the vessel of that torture.
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i da je njegovo telo nosilac tog mučenja.
03:26
I've got to get him out of that body.
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Moram da ga izbavim iz tog tela.
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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Moram da ga izbavim
iz tog tela; ubiću tatu.
iz tog tela; ubiću tatu.
03:32
I call my sister.
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Pozvala sam sestru.
03:35
"Beth," she said.
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„Bet“, rekla je.
„Ne želiš da provedeš ostatak života
03:40
"You don't want
to live the rest of your life
to live the rest of your life
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znajući da si ubila svog oca.
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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Mislim i da bi bila uhapšena,
03:46
because he can't condone it.
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jer on to ne može da odobri.
03:48
And you don't even know
how to buy heroin."
how to buy heroin."
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A ti čak ni ne znaš kako da kupiš heroin.“
03:50
(Laughter)
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(Smeh)
03:51
It's true, I don't.
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Istina je, ne znam.
03:53
(Laughter)
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(Smeh)
Istina je da mi mnogo pričamo
o njegovoj smrti.
o njegovoj smrti.
03:56
The truth is we talk
about his death a lot.
about his death a lot.
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03:58
When will it happen? What will it be like?
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Kada će se desiti? Kako će to izgledati?
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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Ali, volela bih kada bismo svi razgovarali
o smrti dok smo zdravi.
o smrti dok smo zdravi.
04:04
What does my best death look like?
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Kako izgleda moja najbolja verzija smrti?
04:07
What does your best death look like?
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Kako izgleda vaša najbolja verzija smrti?
04:10
But my family didn't know to do that.
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Ali, moja porodica nije umela to da uradi.
04:13
And my sister was right.
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Moja sestra je bila u pravu.
04:15
I shouldn't murder Dad with heroin,
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Ne treba da ubijem tatu heroinom,
04:18
but I've got to get him out of that body.
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ali moram da ga izvučem iz tog tela.
04:22
So I went to a psychic.
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Otišla sam kod vidovnjaka,
zatim kod sveštenika,
pa onda u grupu za podršku,
pa onda u grupu za podršku,
04:24
And then a priest,
and then a support group,
and then a support group,
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04:26
and they all said the same thing:
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i svi su govorili jedno te isto:
04:28
sometimes people hang on
when they're worried about loved ones.
when they're worried about loved ones.
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ponekad se ljudi čvrsto drže u životu
kada su zabrinuti za svoje voljene.
kada su zabrinuti za svoje voljene.
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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Samo im recite da ste bezbedni
i da je u redu da odu kad su spremni.
i da je u redu da odu kad su spremni.
04:35
So I went to see Dad.
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Otišla sam da vidim tatu.
04:37
I found him hunched over
on the ground in the onesie.
on the ground in the onesie.
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Zatekla sam ga zgrčenog
na zemlji u kombinezonu.
na zemlji u kombinezonu.
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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Zurio je mimo mene
i nekako gledao u zemlju.
i nekako gledao u zemlju.
04:43
I gave him a ginger ale
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Dala sam mu sok od đumbira
04:44
and just started talking
about nothing in particular,
about nothing in particular,
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i samo počela da pričam
ni o čemu naročito,
ni o čemu naročito,
04:47
but as I was talking,
he sneezed from the ginger ale.
he sneezed from the ginger ale.
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ali dok sam pričala,
kinuo je zbog soka sa đumbirom.
kinuo je zbog soka sa đumbirom.
04:52
And the sneeze --
it jerked his body upright,
it jerked his body upright,
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Od kijanja mu se telo trglo
u uspravan položaj,
u uspravan položaj,
04:55
sparking him back to life a little bit.
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malo ga povrativši u život.
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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Nastavio je da pije,
kija i trza se iznova i iznova,
kija i trza se iznova i iznova,
05:02
until it stopped.
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dok nije prestalo.
05:05
And I heard,
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Čula sam:
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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Ovo je tako fantastično.
05:15
This is so fabulous."
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Ovo je tako fantastično.“
05:18
His eyes were open
and he was looking at me,
and he was looking at me,
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Oči su mu bile otvorene
i gledao je u mene.
i gledao je u mene.
05:21
and I said, "Hi, Dad!"
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Rekla sam: „Zdravo, tata!“,
05:23
and he said, "Hiya, Beth."
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a on je rekao: „Zdravo, Bet.“
05:27
And I opened my mouth to tell him, right?
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Otvorila sam usta da mu kažem:
05:29
"Dad, if you want to die, you can die.
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„Tata, ako hoćeš, možeš da umreš.
05:32
We're all OK."
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Svi smo u redu.“
05:33
But as I opened my mouth to tell him,
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Ali, čim sam otvorila usta da mu kažem,
05:35
all I could say was, "Dad!
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jedino što sam mogla
da izgovorim bilo je: „Tata!
da izgovorim bilo je: „Tata!
05:40
I miss you."
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Nedostaješ mi.“
05:42
And then he said, "Well, I miss you, too."
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A on je tad rekao:
„Pa, nedostaješ i ti meni.“
„Pa, nedostaješ i ti meni.“
05:44
And then I just fell over
because I'm just a mess.
because I'm just a mess.
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Onda sam se samo sručila
jer sam prosto u haosu.
jer sam prosto u haosu.
05:47
So I fell over and I sat there with him
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Sručila sam se i sedela sa njim
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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jer je prvi put posle dugo vremena
nekako izgledao u redu.
nekako izgledao u redu.
05:56
And I memorized his hands,
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Upamtila sam njegove ruke,
05:59
feeling so grateful that his spirit
was still attached to his body.
was still attached to his body.
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dok sam osećala toliku zahvalnost
što je njegov duh još vezan za telo.
što je njegov duh još vezan za telo.
06:05
And in that moment I realized
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U tom trenutku sam shvatila
06:08
I'm not responsible for this person.
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da ja nisam odgovorna za ovu osobu.
06:11
I'm not his doctor,
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Nisam njegov doktor,
06:13
I'm not his mother,
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nisam njegova majka,
06:15
I'm certainly not his God,
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zasigurno nisam njegov bog,
06:17
and maybe the best way to help him and me
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i možda je najbolji način
da pomognem i njemu i sebi
da pomognem i njemu i sebi
06:21
is to resume our roles
as father and daughter.
as father and daughter.
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da nastavim sa našim ulogama oca i ćerke.
06:25
And so we just sat there,
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I tako smo samo sedeli,
06:27
calm and quiet like we've always done.
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mirni i tihi kao i uvek.
06:30
Nobody was productive.
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Niko nije bio produktivan.
06:32
Both of us are still strong.
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Oboje smo još jaki.
06:37
"OK, Dad. I'm going to go,
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„U redu, tata.
Idem, ali vidimo se sutra.“
06:40
but I'll see you tomorrow."
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06:43
"OK," he said.
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„U redu“, rekao je.
06:46
"Hey,
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„Hej,
06:48
this is a pretty nice hacienda."
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ovo je baš fina hacijenda.“
06:51
Thank you.
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Hvala.
06:53
(Applause)
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(Aplauz)
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