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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.

- 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

Razmišljala sam.
00:12
I've been doing some thinking.
Ubiću svog tatu.
00:16
I'm going to kill my dad.
Pozvala sam sestru.
00:19
I called my sister.
„Slušaj.
00:20
"Listen,
Razmišljala sam.
00:21
I've been doing some thinking.
Ubiću tatu.
00:24
I'm going to kill Dad.
Odvešću ga u Oregon,
00:27
I'm going to take him to Oregon,
naći ću heroin
00:30
find some heroin,
i daću mu ga.“
00:32
and give it to him."
Moj tata ima frontotemporalnu demenciju,
00:34
My dad has frontotemporal lobe dementia,
ili FTD.
00:36
or FTD.
To je zbunjujuća bolest koja pogađa ljude
u 50-im ili 60-im godinama.
00:38
It's a confusing disease
that hits people in their 50s or 60s.
00:41
It can completely change
someone's personality,
Može u potpunosti promeniti ličnost osobe,
učinivši je paranoidnom, čak i nasilnom.
00:44
making them paranoid and even violent.
Moj tata je bio bolestan čitavu deceniju,
00:47
My dad's been sick for a decade,
ali se pre tri godine baš razboleo
00:49
but three years ago he got really sick,
i morali smo da ga iselimo
iz njegove kuće -
00:51
and we had to move him out of his house --
kuće u kojoj sam odrasla,
00:54
the house that I grew up in,
kuće koju je izgradio svojim rukama.
00:56
the house that he built
with his own hands.
Moj snažni, kul tata sa glasom u falsetu
00:59
My strapping, cool dad
with the falsetto singing voice
morao je da se preseli
u ustanovu za danonoćnu negu
01:04
had to move into a facility
for round-the-clock care
kada je imao svega 65 godina.
01:06
when he was just 65.
Najpre smo moja mama i sestre
napravile grešku
01:10
At first my mom and sisters
and I made the mistake
i smestile ga u običan starački dom.
01:13
of putting him in a regular nursing home.
Bilo je veoma lepo;
01:16
It was really pretty;
imao je plišane tepihe,
popodnevne časove umetnosti
01:17
it had plush carpet
and afternoon art classes
i psa po imenu Dajana.
01:20
and a dog named Diane.
Ali, onda sam dobila telefonski poziv.
01:23
But then I got a phone call.
„Gospođice Maloun,
uhapsili smo vašeg oca.“
01:26
"Ms. Malone, we've arrested your father."
„Šta?“
01:30
"What?"
„Pa, svima je pretio priborom za jelo.
01:32
"Well, he threatened
everybody with cutlery.
Zatim je istrgao zavese sa zidova,
01:36
And then he yanked
the curtains off the wall,
a onda je pokušao
da baci biljke kroz prozor.
01:39
and then he tried
to throw plants out the window.
A potom, pa, izvukao
je sve starice iz kolica.“
01:42
And then, well, he pulled all
the old ladies out of their wheelchairs."
„Sve starice?“
01:49
"All the old ladies?"
(Smeh)
01:50
(Laughter)
„Kakav kauboj.“
01:51
"What a cowboy."
(Smeh)
01:53
(Laughter)
Nakon što su ga izbacili odatle,
01:54
After he got kicked out of there,
prebacivale smo ga više puta
u gomilu državnih ustanova
01:56
we bounced him between
a bunch of state-run facilities
dok nismo našle centar za lečenje
posebno namenjen ljudima sa demencijom.
01:59
before finding a treatment center
specifically for people with dementia.
U početku nam se dopao,
02:03
At first, he kind of liked it,
ali je vremenom njegovo zdravlje oslabilo
02:05
but over time his health declined,
i jednog dana sam ušla
02:07
and one day I walked in
i pronašla ga kako sedi zgrčen na zemlji
dok je nosio kombinezon -
02:08
and found him sitting hunched over
on the ground wearing a onesie --
ona odela koja se zatvaraju
rajsferšlusom pozadi.
02:12
those kinds of outfits
that zip in the back.
Posmatrala sam ga
oko sat vremena dok ga je vukao,
02:17
I watched him for about an hour
as he yanked at it,
pokušavajući da se izvuče iz toga.
02:21
trying to find a way out of this thing.
Trebalo bi da bude praktično,
02:24
And it's supposed to be practical,
ali meni je izgledalo kao ludačka košulja.
02:26
but to me it looked like a straightjacket.
Zato sam istrčala.
02:29
And so I ran out.
Ostavila sam ga tamo.
02:32
I left him there.
Sedela sam u svom kamionu -
njegovom starom kamionu, pogurena,
02:35
I sat in my truck -- his old truck --
02:37
hunched over,
dok je duboki grleni vapaj
dopirao iz moje stomačne duplje.
02:39
this really deep guttural cry
coming out of the pit of my belly.
Jednostavno nisam mogla
da poverujem da bi moj otac,
02:43
I just couldn't believe that my father,
Adonis moje mladosti,
02:47
the Adonis of my youth,
moj veoma dragi prijatelj,
02:50
my really dear friend,
smatrao da je ovakav život
više vredan življenja.
02:53
would think that this kind of life
was worth living anymore.
Programirani smo da dajemo
prioritet produktivnosti.
02:58
We're programmed
to prioritize productivity.
Zato kada osoba - Adonis u ovom slučaju -
03:02
So when a person --
an Adonis in this case --
više nije produktivna
onako kako to očekujemo od nje,
03:06
is no longer productive
in the way we expect him to be,
onako kako ona očekuje od sebe,
03:09
the way that he expects himself to be,
kakva vrednost preostaje tom životu?
03:12
what value does that life have left?
Tog dana u kamionu
03:15
That day in the truck,
jedino o čemu sam mogla da mislim
jeste da se moj tata muči
03:17
all I could imagine
was that my dad was being tortured
i da je njegovo telo nosilac tog mučenja.
03:21
and his body was
the vessel of that torture.
Moram da ga izbavim iz tog tela.
03:26
I've got to get him out of that body.
Moram da ga izbavim
iz tog tela; ubiću tatu.
03:28
I've got to get him out of that body;
I'm going to kill Dad.
Pozvala sam sestru.
03:32
I call my sister.
„Bet“, rekla je.
03:35
"Beth," she said.
„Ne želiš da provedeš ostatak života
03:40
"You don't want
to live the rest of your life
znajući da si ubila svog oca.
03:42
knowing that you killed your father.
Mislim i da bi bila uhapšena,
03:44
And you'd be arrested I think,
jer on to ne može da odobri.
03:46
because he can't condone it.
A ti čak ni ne znaš kako da kupiš heroin.“
03:48
And you don't even know
how to buy heroin."
(Smeh)
03:50
(Laughter)
Istina je, ne znam.
03:51
It's true, I don't.
(Smeh)
03:53
(Laughter)
Istina je da mi mnogo pričamo
o njegovoj smrti.
03:56
The truth is we talk
about his death a lot.
Kada će se desiti? Kako će to izgledati?
03:58
When will it happen? What will it be like?
Ali, volela bih kada bismo svi razgovarali
o smrti dok smo zdravi.
04:00
But I wish that we would have talked
about death when we were all healthy.
Kako izgleda moja najbolja verzija smrti?
04:04
What does my best death look like?
Kako izgleda vaša najbolja verzija smrti?
04:07
What does your best death look like?
Ali, moja porodica nije umela to da uradi.
04:10
But my family didn't know to do that.
Moja sestra je bila u pravu.
04:13
And my sister was right.
Ne treba da ubijem tatu heroinom,
04:15
I shouldn't murder Dad with heroin,
ali moram da ga izvučem iz tog tela.
04:18
but I've got to get him out of that body.
Otišla sam kod vidovnjaka,
04:22
So I went to a psychic.
zatim kod sveštenika,
pa onda u grupu za podršku,
04:24
And then a priest,
and then a support group,
04:26
and they all said the same thing:
i svi su govorili jedno te isto:
04:28
sometimes people hang on
when they're worried about loved ones.
ponekad se ljudi čvrsto drže u životu
kada su zabrinuti za svoje voljene.
04:31
Just tell them you're safe,
and it's OK to go when you're ready.
Samo im recite da ste bezbedni
i da je u redu da odu kad su spremni.
Otišla sam da vidim tatu.
04:35
So I went to see Dad.
Zatekla sam ga zgrčenog
na zemlji u kombinezonu.
04:37
I found him hunched over
on the ground in the onesie.
Zurio je mimo mene
i nekako gledao u zemlju.
04:40
He was staring past me
and just kind of looking at the ground.
Dala sam mu sok od đumbira
04:43
I gave him a ginger ale
i samo počela da pričam
ni o čemu naročito,
04:44
and just started talking
about nothing in particular,
ali dok sam pričala,
kinuo je zbog soka sa đumbirom.
04:47
but as I was talking,
he sneezed from the ginger ale.
Od kijanja mu se telo trglo
u uspravan položaj,
04:52
And the sneeze --
it jerked his body upright,
malo ga povrativši u život.
04:55
sparking him back to life a little bit.
Nastavio je da pije,
kija i trza se iznova i iznova,
04:57
And he just kept drinking and sneezing
and sparking, over and over and over again
dok nije prestalo.
05:02
until it stopped.
Čula sam:
05:05
And I heard,
„Heheheheheh,
05:07
"Heheheheheh,
heheheheheh.
05:09
heheheheheh ...
Ovo je tako fantastično.
05:12
this is so fabulous.
Ovo je tako fantastično.“
05:15
This is so fabulous."
Oči su mu bile otvorene
i gledao je u mene.
05:18
His eyes were open
and he was looking at me,
Rekla sam: „Zdravo, tata!“,
05:21
and I said, "Hi, Dad!"
a on je rekao: „Zdravo, Bet.“
05:23
and he said, "Hiya, Beth."
Otvorila sam usta da mu kažem:
05:27
And I opened my mouth to tell him, right?
„Tata, ako hoćeš, možeš da umreš.
05:29
"Dad, if you want to die, you can die.
Svi smo u redu.“
05:32
We're all OK."
Ali, čim sam otvorila usta da mu kažem,
05:33
But as I opened my mouth to tell him,
05:35
all I could say was, "Dad!
jedino što sam mogla
da izgovorim bilo je: „Tata!
Nedostaješ mi.“
05:40
I miss you."
A on je tad rekao:
„Pa, nedostaješ i ti meni.“
05:42
And then he said, "Well, I miss you, too."
Onda sam se samo sručila
jer sam prosto u haosu.
05:44
And then I just fell over
because I'm just a mess.
Sručila sam se i sedela sa njim
05:47
So I fell over and I sat there with him
jer je prvi put posle dugo vremena
nekako izgledao u redu.
05:52
because for the first time in a long time
he seemed kind of OK.
Upamtila sam njegove ruke,
05:56
And I memorized his hands,
dok sam osećala toliku zahvalnost
što je njegov duh još vezan za telo.
05:59
feeling so grateful that his spirit
was still attached to his body.
U tom trenutku sam shvatila
06:05
And in that moment I realized
da ja nisam odgovorna za ovu osobu.
06:08
I'm not responsible for this person.
Nisam njegov doktor,
06:11
I'm not his doctor,
nisam njegova majka,
06:13
I'm not his mother,
zasigurno nisam njegov bog,
06:15
I'm certainly not his God,
i možda je najbolji način
da pomognem i njemu i sebi
06:17
and maybe the best way to help him and me
da nastavim sa našim ulogama oca i ćerke.
06:21
is to resume our roles
as father and daughter.
I tako smo samo sedeli,
06:25
And so we just sat there,
mirni i tihi kao i uvek.
06:27
calm and quiet like we've always done.
Niko nije bio produktivan.
06:30
Nobody was productive.
Oboje smo još jaki.
06:32
Both of us are still strong.
„U redu, tata.
06:37
"OK, Dad. I'm going to go,
Idem, ali vidimo se sutra.“
06:40
but I'll see you tomorrow."
„U redu“, rekao je.
06:43
"OK," he said.
„Hej,
06:46
"Hey,
ovo je baš fina hacijenda.“
06:48
this is a pretty nice hacienda."
Hvala.
06:51
Thank you.
(Aplauz)
06:53
(Applause)
Translated by Ivana Krivokuća
Reviewed by Tijana Mihajlović

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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