TED Residency
Beth Malone: How my dad's dementia changed my idea of death (and life)
Beth Malone: Kako je demencija moga oca promijenila moje shvaćanje smrti (i života)
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Toplinom i milošću, Beth Malone priča vrlo osobnu priču o borbi njezina oca s frontotemporalnom demencijom te kako je to promijenilo njen pogled na smrt (i život). Dirljiv govor o kćerinoj ljubavi -- o oslobađanju te pronalasku 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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Ubit ću svog tatu.
00:19
I called my sister.
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Nazvala sam svoju 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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Ubit ću tatu.
00:27
I'm going to take him to Oregon,
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Odvest ću ga u Oregon,
00:30
find some heroin,
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nabaviti heroin
00:32
and give it to him."
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te mu ga dati."
00:34
My dad has frontotemporal lobe dementia,
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Moj otac ima frontotemporalnu demenciju,
00:36
or FTD.
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odnosno 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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To je bolest koja pogađa ljude
u 50-im ili 60-im godinama.
u 50-im ili 60-im godinama.
00:41
It can completely change
someone's personality,
someone's personality,
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Može u potpunosti promijeniti
nečiju osobnost,
nečiju osobnost,
00:44
making them paranoid and even violent.
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čineći ljude paranoičnima,
čak i nasilnima.
čak i nasilnima.
00:47
My dad's been sick for a decade,
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Moj je otac bolestan jedno desetljeće,
00:49
but three years ago he got really sick,
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ali prije tri godine
bolest je uznapredovala
bolest je uznapredovala
00:51
and we had to move him out of his house --
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te smo ga morali iseliti iz njegove kuće,
00:54
the house that I grew up in,
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kuće u kojoj sam ja odrasla,
00:56
the house that he built
with his own hands.
with his own hands.
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kuće koju je on izgradio vlastitim rukama.
00:59
My strapping, cool dad
with the falsetto singing voice
with the falsetto singing voice
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Moj kršan, staložen otac
falseto pjevačkog glasa,
falseto pjevačkog glasa,
01:04
had to move into a facility
for round-the-clock care
for round-the-clock care
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morao se preseliti u ustanovu
s cjelodnevnom skrbi
s cjelodnevnom skrbi
01:06
when he was just 65.
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kad je imao tek 65 godina.
01:10
At first my mom and sisters
and I made the mistake
and I made the mistake
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Na početku smo majka, sestre i ja
napravile pogrešku
napravile pogrešku
01:13
of putting him in a regular nursing home.
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smjestivši ga u redovan starački dom.
01:16
It was really pretty;
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Bio je stvarno lijep;
01:17
it had plush carpet
and afternoon art classes
and afternoon art classes
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imao je tepih od pliša
i popodnevne satove umjetnosti
i popodnevne satove umjetnosti
01:20
and a dog named Diane.
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te psa zvanog Diane.
01:23
But then I got a phone call.
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Ali, onda sam primila poziv.
01:26
"Ms. Malone, we've arrested your father."
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"Gospođice Malone, uhitili smo Vašeg oca."
01:30
"What?"
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"Molim?"
01:32
"Well, he threatened
everybody with cutlery.
everybody with cutlery.
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"Pa, prijetio je svima
u zajednici priborom za jelo.
u zajednici 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 skinuo zavjese sa zida,
01:39
and then he tried
to throw plants out the window.
to throw plants out the window.
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a potom je pokušao baciti
biljke kroz prozor.
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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I onda je izvukao sve stare žene
iz njihovih invalidskih kolica."
iz njihovih invalidskih kolica."
01:49
"All the old ladies?"
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"Sve stare žene?"
01:50
(Laughter)
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(Smijeh)
01:51
"What a cowboy."
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"Kakav šarmer."
01:53
(Laughter)
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(Smijeh)
01:54
After he got kicked out of there,
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Nakon što je izbačen iz tog doma,
01:56
we bounced him between
a bunch of state-run facilities
a bunch of state-run facilities
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premještali smo ga između
više državnih ustanova
više državnih ustanova
01:59
before finding a treatment center
specifically for people with dementia.
specifically for people with dementia.
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prije no što smo našli lječilišni centar
specijaliziran za ljude s demencijom.
specijaliziran za ljude s demencijom.
02:03
At first, he kind of liked it,
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Na prvu mu se malo svidjelo,
02:05
but over time his health declined,
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ali mu se s vremenom stanje pogoršavalo
02:07
and one day I walked in
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te sam jedan dan došla
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 sjedi pogrbljeno
na podu noseći kombinezon --
na podu noseći kombinezon --
02:12
those kinds of outfits
that zip in the back.
that zip in the back.
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ona vrsta odjeće koja se kopča na leđima.
02:17
I watched him for about an hour
as he yanked at it,
as he yanked at it,
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Gledala sam ga otprilike sat vremena
dok je to povlačio,
dok je to povlačio,
02:21
trying to find a way out of this thing.
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pokušavajući naći način da to skine.
02:24
And it's supposed to be practical,
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I trebalo bi biti praktično,
02:26
but to me it looked like a straightjacket.
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ali je meni to izgledalo
kao luđačka košulja.
kao luđačka košulja.
02:29
And so I ran out.
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I zato sam istrčala van.
02:32
I left him there.
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Ostavila sam ga tamo.
02:35
I sat in my truck -- his old truck --
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Sjela sam u kamionet -- njegov stari --
02:37
hunched over,
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pogrbljena,
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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a taj duboki unutrašnji osjećaj tuge
dolazio mi je iz trbuha.
dolazio mi je iz trbuha.
02:43
I just couldn't believe that my father,
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Jednostavno nisam mogla
vjerovati da moj otac,
vjerovati da 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 vrlo dragi prijatelj,
02:53
would think that this kind of life
was worth living anymore.
was worth living anymore.
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misli da je ovaj način života
više vrijedan življenja.
više vrijedan življenja.
02:58
We're programmed
to prioritize productivity.
to prioritize productivity.
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Programirani smo da na prvo mjesto
stavljamo produktivnost.
stavljamo produktivnost.
03:02
So when a person --
an Adonis in this case --
an Adonis in this case --
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Pa kada osoba, Adonis u ovome 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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nije više produktivna na način
na koji mi očekujemo da treba biti,
na koji mi očekujemo da treba biti,
03:09
the way that he expects himself to be,
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na način na koji on očekuje od sebe,
03:12
what value does that life have left?
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koja vrijednost tog života onda ostaje?
03:15
That day in the truck,
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Toga dana u kamionetu,
03:17
all I could imagine
was that my dad was being tortured
was that my dad was being tortured
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sve što sam mogla zamisliti
je da mi otac prolazi kroz mučenje
je da mi otac prolazi kroz mučenje
03:21
and his body was
the vessel of that torture.
the vessel of that torture.
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i da je njegovo tijelo
izvor tog njegovog mučenja.
izvor tog njegovog mučenja.
03:26
I've got to get him out of that body.
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Moram ga izbaviti iz tog tijela.
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 ga izbaviti iz tog tijela;
ubit ću svog tatu.
ubit ću svog tatu.
03:32
I call my sister.
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Nazovem sestru.
03:35
"Beth," she said.
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"Beth," kaže ona.
03:40
"You don't want
to live the rest of your life
to live the rest of your life
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Ne želiš proživjeti ostatak svog života
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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I bila bi uhićena, mislim,
03:46
because he can't condone it.
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zato što on to ne može odobriti.
03:48
And you don't even know
how to buy heroin."
how to buy heroin."
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I ti uopće ne znaš ni kako kupiti heroin."
03:50
(Laughter)
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(Smijeh)
03:51
It's true, I don't.
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Istina, ne znam.
03:53
(Laughter)
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(Smijeh)
03:56
The truth is we talk
about his death a lot.
about his death a lot.
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Istina je da dosta pričamo
o njegovoj smrti.
o njegovoj smrti.
03:58
When will it happen? What will it be like?
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Kada će se dogoditi? Kakva će biti?
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 htjela bih da smo o smrti pričali
kada smo svi bili zdravi.
kada smo svi bili zdravi.
04:04
What does my best death look like?
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Kako moja najbolja smrt izgleda?
04:07
What does your best death look like?
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Kako vaša najbolja smrt izgleda?
04:10
But my family didn't know to do that.
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Ali moja obitelj nije znala to napraviti.
04:13
And my sister was right.
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I moja je sestra bila u pravu.
04:15
I shouldn't murder Dad with heroin,
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Ne bih smjela ubiti tatu heroinom,
04:18
but I've got to get him out of that body.
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ali ga moram izbaviti iz tog tijela.
04:22
So I went to a psychic.
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Pa sam otišla psihijatru.
04:24
And then a priest,
and then a support group,
and then a support group,
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Zatim svećeniku pa u grupu za podršku
04:26
and they all said the same thing:
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i svi su rekli istu stvar :
04:28
sometimes people hang on
when they're worried about loved ones.
when they're worried about loved ones.
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nekada ljudi ostaju kada
brinu o svojim bližnjima.
brinu o svojim bližnjima.
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 sigurni
te da je u redu da odu čim su spremni.
te da je u redu da odu čim su spremni.
04:35
So I went to see Dad.
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Pa sam otišla vidjeti tatu.
04:37
I found him hunched over
on the ground in the onesie.
on the ground in the onesie.
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Našla sam ga pogrbljenog
na podu u kombinezonu.
na podu 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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Gledao je pored mene i samo,
na neki način, gledao u pod.
na neki način, gledao u pod.
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 pričati ni o čemu važnom,
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 ja pričala
on je kihnuo od soka.
on je kihnuo od soka.
04:52
And the sneeze --
it jerked his body upright,
it jerked his body upright,
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I to kihanje mu je trznulo
tijelo prema gore,
tijelo prema gore,
04:55
sparking him back to life a little bit.
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pomalo ga vraćajući 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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I samo je nastavio piti i kihati
te se vraćati u život, ponovno i ponovno
te se vraćati u život, ponovno i ponovno
05:02
until it stopped.
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dok nije prestalo.
05:05
And I heard,
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Onda sam čula,
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 sjajno.
05:15
This is so fabulous."
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Ovo je tako sjajno."
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
te je gledao u mene,
te je gledao u mene,
05:21
and I said, "Hi, Dad!"
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rekla sam mu, "Bok, tata!"
05:23
and he said, "Hiya, Beth."
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a on je rekao, "Bok, Beth."
05:27
And I opened my mouth to tell him, right?
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I otvorila sam usta da mu kažem,
05:29
"Dad, if you want to die, you can die.
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"Tata, ako želiš umrijeti, možeš umrijeti.
05:32
We're all OK."
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Mi smo svi dobro."
05:33
But as I opened my mouth to tell him,
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Ali kako otvorih usta da mu kažem,
mogla sam mu samo reći, "Tata!
05:35
all I could say was, "Dad!
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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 odgovorio,
"Pa, i ti meni nedostaješ."
"Pa, i ti meni nedostaješ."
05:44
And then I just fell over
because I'm just a mess.
because I'm just a mess.
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I onda sam samo pala prema njemu
jer sam bila potresena.
jer sam bila potresena.
05:47
So I fell over and I sat there with him
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I tako sam pala prema njemu
i sjedila s njim,
i sjedila s 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 po prvi put nakon dugo vremena,
činio se donekle dobro.
činio se donekle dobro.
05:56
And I memorized his hands,
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I sjećam se njegovih ruku,
05:59
feeling so grateful that his spirit
was still attached to his body.
was still attached to his body.
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osjećajući se toliko zahvalno što je
njegov duh još povezan s njegovim tijelom.
njegov duh još povezan s njegovim tijelom.
06:05
And in that moment I realized
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I u tom sam trenutku shvatila
06:08
I'm not responsible for this person.
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da nisam ja odgovorna za ovu osobu.
06:11
I'm not his doctor,
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Nisam njegov liječnik,
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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sigurno nisam njegov Bog
06:17
and maybe the best way to help him and me
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te je možda najbolji način
da pomognem njemu, a i sebi,
da pomognem njemu, a i sebi,
06:21
is to resume our roles
as father and daughter.
as father and daughter.
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da održavam naše uloge oca i kćeri.
06:25
And so we just sat there,
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I tako smo sjedili tamo,
06:27
calm and quiet like we've always done.
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smireni i tihi kao što smo uvijek bili.
06:30
Nobody was productive.
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Nitko nije bio produktivan.
06:32
Both of us are still strong.
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Oboje smo još uvijek snažni.
06:37
"OK, Dad. I'm going to go,
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"Dobro, tata. Sada ću ići,
06:40
but I'll see you tomorrow."
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ali vidimo se sutra."
06:43
"OK," he said.
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"Dobro," rekao je.
06:46
"Hey,
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"Hej,
06:48
this is a pretty nice hacienda."
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ovo je poprilično lijepo imanje."
06:51
Thank you.
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Hvala vam.
06:53
(Applause)
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(Pljesak)
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