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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.

- 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 thinkingразмишљање.
Ubiću svog tatu.
00:16
I'm going to killубиј my dadтата.
Pozvala sam sestru.
00:19
I calledпозвани my sisterсестра.
„Slušaj.
00:20
"Listen,
Razmišljala sam.
00:21
I've been doing some thinkingразмишљање.
Ubiću tatu.
00:24
I'm going to killубиј DadTata.
Odvešću ga u Oregon,
00:27
I'm going to take him to OregonOregon,
naći ću heroin
00:30
find some heroinheroina,
i daću mu ga.“
00:32
and give it to him."
Moj tata ima frontotemporalnu demenciju,
00:34
My dadтата has frontotemporalprednjoj strani loberezanj dementiaDemencija,
ili FTD.
00:36
or FTDFTD.
To je zbunjujuća bolest koja pogađa ljude
u 50-im ili 60-im godinama.
00:38
It's a confusingзбуњујуће diseaseболест
that hitsхитови people in theirњихова 50s or 60s.
00:41
It can completelyу потпуности changeпромена
someone'sНеко је personalityличност,
Može u potpunosti promeniti ličnost osobe,
učinivši je paranoidnom, čak i nasilnom.
00:44
makingстварање them paranoidparanoja and even violentнасилан.
Moj tata je bio bolestan čitavu deceniju,
00:47
My dad'sТата је been sickболестан for a decadeдекада,
ali se pre tri godine baš razboleo
00:49
but threeтри yearsгодине agoпре he got really sickболестан,
i morali smo da ga iselimo
iz njegove kuće -
00:51
and we had to moveпотез him out of his houseкућа --
kuće u kojoj sam odrasla,
00:54
the houseкућа that I grewрастао up in,
kuće koju je izgradio svojim rukama.
00:56
the houseкућа that he builtизграђен
with his ownвластити handsруке.
Moj snažni, kul tata sa glasom u falsetu
00:59
My strappingStavljam, coolхладан dadтата
with the falsettomu singingпевање voiceглас
morao je da se preseli
u ustanovu za danonoćnu negu
01:04
had to moveпотез into a facilityобјекат
for round-the-clockstalna careнега
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 momмама and sistersсестре
and I madeмаде the mistakeгрешка
i smestile ga u običan starački dom.
01:13
of puttingстављање him in a regularредовно nursingstarački home.
Bilo je veoma lepo;
01:16
It was really prettyприлично;
imao je plišane tepihe,
popodnevne časove umetnosti
01:17
it had plushpliљ carpetтепих
and afternoonпоподневни artуметност classespredavanja
i psa po imenu Dajana.
01:20
and a dogпас namedназван DianeDiane.
Ali, onda sam dobila telefonski poziv.
01:23
But then I got a phoneтелефон call.
„Gospođice Maloun,
uhapsili smo vašeg oca.“
01:26
"MsMS. MaloneMalone, we'veми смо arrestedУхапшен your fatherотац."
„Šta?“
01:30
"What?"
„Pa, svima je pretio priborom za jelo.
01:32
"Well, he threatenedпретио
everybodyсвима with cutlerypribor za jelo.
Zatim je istrgao zavese sa zidova,
01:36
And then he yankedзанкирао
the curtainszavese off the wallзид,
a onda je pokušao
da baci biljke kroz prozor.
01:39
and then he triedПокушали
to throwбацање plantsбиљке out the windowпрозор.
A potom, pa, izvukao
je sve starice iz kolica.“
01:42
And then, well, he pulledвуче all
the oldстари ladiesдаме out of theirњихова wheelchairsинвалидски колица."
„Sve starice?“
01:49
"All the oldстари ladiesдаме?"
(Smeh)
01:50
(LaughterSmeh)
„Kakav kauboj.“
01:51
"What a cowboykauboj."
(Smeh)
01:53
(LaughterSmeh)
Nakon što su ga izbacili odatle,
01:54
After he got kickedкицкед out of there,
prebacivale smo ga više puta
u gomilu državnih ustanova
01:56
we bouncedodbilo him betweenизмеђу
a bunchгомилу of state-rundržavna facilitiesобјеката
dok nismo našle centar za lečenje
posebno namenjen ljudima sa demencijom.
01:59
before findingпроналажење a treatmentтретман centerцентар
specificallyпосебно for people with dementiaDemencija.
U početku nam se dopao,
02:03
At first, he kindкинд of likedволи it,
ali je vremenom njegovo zdravlje oslabilo
02:05
but over time his healthздравље declinedOdbili su,
i jednog dana sam ušla
02:07
and one day I walkedходао in
i pronašla ga kako sedi zgrčen na zemlji
dok je nosio kombinezon -
02:08
and foundнашао him sittingседење hunchedухваћен over
on the groundземља wearingноси a onesiekombinezonu --
ona odela koja se zatvaraju
rajsferšlusom pozadi.
02:12
those kindsврсте of outfitskostimi
that zipзип in the back.
Posmatrala sam ga
oko sat vremena dok ga je vukao,
02:17
I watchedгледао him for about an hourсат
as he yankedзанкирао at it,
pokušavajući da se izvuče iz toga.
02:21
tryingпокушавајући to find a way out of this thing.
Trebalo bi da bude praktično,
02:24
And it's supposedпретпостављено to be practicalпрактично,
ali meni je izgledalo kao ludačka košulja.
02:26
but to me it lookedпогледао like a straightjacketludaиku koљulju.
Zato sam istrčala.
02:29
And so I ranтрчао out.
Ostavila sam ga tamo.
02:32
I left him there.
Sedela sam u svom kamionu -
njegovom starom kamionu, pogurena,
02:35
I satсат in my truckкамион -- his oldстари truckкамион --
02:37
hunchedухваћен over,
dok je duboki grleni vapaj
dopirao iz moje stomačne duplje.
02:39
this really deepдубоко gutturalgrlen cryплач
comingдолазе out of the pitjama of my bellyстомак.
Jednostavno nisam mogla
da poverujem da bi moj otac,
02:43
I just couldn'tније могао believe that my fatherотац,
Adonis moje mladosti,
02:47
the AdonisAdonis of my youthмлади,
moj veoma dragi prijatelj,
02:50
my really dearдрага friendпријатељ,
smatrao da je ovakav život
više vredan življenja.
02:53
would think that this kindкинд of life
was worthвреди livingживи anymoreвише.
Programirani smo da dajemo
prioritet produktivnosti.
02:58
We're programmedпрограмирано
to prioritizeприоритет productivityпродуктивност.
Zato kada osoba - Adonis u ovom slučaju -
03:02
So when a personособа --
an AdonisAdonis in this caseслучај --
više nije produktivna
onako kako to očekujemo od nje,
03:06
is no longerдуже productiveпродуктиван
in the way we expectочекујте him to be,
onako kako ona očekuje od sebe,
03:09
the way that he expectsočekuje da će himselfсам to be,
kakva vrednost preostaje tom životu?
03:12
what valueвредност does that life have left?
Tog dana u kamionu
03:15
That day in the truckкамион,
jedino o čemu sam mogla da mislim
jeste da se moj tata muči
03:17
all I could imagineзамислити
was that my dadтата was beingбиће torturedмучен
i da je njegovo telo nosilac tog mučenja.
03:21
and his bodyтело was
the vesselпловило of that tortureмучење.
Moram da ga izbavim iz tog tela.
03:26
I've got to get him out of that bodyтело.
Moram da ga izbavim
iz tog tela; ubiću tatu.
03:28
I've got to get him out of that bodyтело;
I'm going to killубиј DadTata.
Pozvala sam sestru.
03:32
I call my sisterсестра.
„Bet“, rekla je.
03:35
"BethBet," she said.
„Ne želiš da provedeš ostatak života
03:40
"You don't want
to liveживи the restодмор of your life
znajući da si ubila svog oca.
03:42
knowingзнајући that you killedубијен your fatherотац.
Mislim i da bi bila uhapšena,
03:44
And you'dти би be arrestedУхапшен I think,
jer on to ne može da odobri.
03:46
because he can't condoneodobravam it.
A ti čak ni ne znaš kako da kupiš heroin.“
03:48
And you don't even know
how to buyкупити heroinheroina."
(Smeh)
03:50
(LaughterSmeh)
Istina je, ne znam.
03:51
It's trueистина, I don't.
(Smeh)
03:53
(LaughterSmeh)
Istina je da mi mnogo pričamo
o njegovoj smrti.
03:56
The truthистина is we talk
about his deathсмрт a lot.
Kada će se desiti? Kako će to izgledati?
03:58
When will it happenдесити се? What will it be like?
Ali, volela bih kada bismo svi razgovarali
o smrti dok smo zdravi.
04:00
But I wishжелети that we would have talkedпричао
about deathсмрт when we were all healthyздрав.
Kako izgleda moja najbolja verzija smrti?
04:04
What does my bestнајбоље deathсмрт look like?
Kako izgleda vaša najbolja verzija smrti?
04:07
What does your bestнајбоље deathсмрт look like?
Ali, moja porodica nije umela to da uradi.
04:10
But my familyпородица didn't know to do that.
Moja sestra je bila u pravu.
04:13
And my sisterсестра was right.
Ne treba da ubijem tatu heroinom,
04:15
I shouldn'tне би требало murderубиство DadTata with heroinheroina,
ali moram da ga izvučem iz tog tela.
04:18
but I've got to get him out of that bodyтело.
Otišla sam kod vidovnjaka,
04:22
So I wentотишао to a psychicvidovnjak.
zatim kod sveštenika,
pa onda u grupu za podršku,
04:24
And then a priestсвештеник,
and then a supportподршка groupгрупа,
04:26
and they all said the sameисти thing:
i svi su govorili jedno te isto:
04:28
sometimesпонекад people hangвиси on
when they're worriedзабринуто about lovedвољен onesоне.
ponekad se ljudi čvrsto drže u životu
kada su zabrinuti za svoje voljene.
04:31
Just tell them you're safeсигурно,
and it's OK to go when you're readyспреман.
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 wentотишао to see DadTata.
Zatekla sam ga zgrčenog
na zemlji u kombinezonu.
04:37
I foundнашао him hunchedухваћен over
on the groundземља in the onesiekombinezonu.
Zurio je mimo mene
i nekako gledao u zemlju.
04:40
He was staringзурење pastпрошлост me
and just kindкинд of looking at the groundземља.
Dala sam mu sok od đumbira
04:43
I gaveдала him a gingerGinger alepivo
i samo počela da pričam
ni o čemu naročito,
04:44
and just startedпочела talkingпричају
about nothing in particularпосебно,
ali dok sam pričala,
kinuo je zbog soka sa đumbirom.
04:47
but as I was talkingпричају,
he sneezedkinuo from the gingerGinger alepivo.
Od kijanja mu se telo trglo
u uspravan položaj,
04:52
And the sneezekijanje --
it jerkedizdrkali his bodyтело uprightусправно,
malo ga povrativši u život.
04:55
sparkingспаркинг him back to life a little bitмало.
Nastavio je da pije,
kija i trza se iznova i iznova,
04:57
And he just keptчува drinkingпити and sneezingкијавица
and sparkingспаркинг, over and over and over again
dok nije prestalo.
05:02
untilсве док it stoppedпрестала.
Čula sam:
05:05
And I heardслушао,
„Heheheheheh,
05:07
"HehehehehehHeheheheheh,
heheheheheh.
05:09
hehehehehehheheheheheh ...
Ovo je tako fantastično.
05:12
this is so fabulousсјајно.
Ovo je tako fantastično.“
05:15
This is so fabulousсјајно."
Oči su mu bile otvorene
i gledao je u mene.
05:18
His eyesочи were openотворен
and he was looking at me,
Rekla sam: „Zdravo, tata!“,
05:21
and I said, "HiZdravo, DadTata!"
a on je rekao: „Zdravo, Bet.“
05:23
and he said, "HiyaZdravo, BethBet."
Otvorila sam usta da mu kažem:
05:27
And I openedотворен my mouthуста to tell him, right?
„Tata, ako hoćeš, možeš da umreš.
05:29
"DadTata, if you want to dieумрети, you can dieумрети.
Svi smo u redu.“
05:32
We're all OK."
Ali, čim sam otvorila usta da mu kažem,
05:33
But as I openedотворен my mouthуста to tell him,
05:35
all I could say was, "DadTata!
jedino što sam mogla
da izgovorim bilo je: „Tata!
Nedostaješ mi.“
05:40
I missГоспођица you."
A on je tad rekao:
„Pa, nedostaješ i ti meni.“
05:42
And then he said, "Well, I missГоспођица you, too."
Onda sam se samo sručila
jer sam prosto u haosu.
05:44
And then I just fellпао over
because I'm just a messнеред.
Sručila sam se i sedela sa njim
05:47
So I fellпао over and I satсат 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 seemedизгледало је kindкинд of OK.
Upamtila sam njegove ruke,
05:56
And I memorizedZapamtio his handsруке,
dok sam osećala toliku zahvalnost
što je njegov duh još vezan za telo.
05:59
feelingОсећај so gratefulзахвални that his spiritдух
was still attachedу прилогу to his bodyтело.
U tom trenutku sam shvatila
06:05
And in that momentтренутак I realizedреализован
da ja nisam odgovorna za ovu osobu.
06:08
I'm not responsibleодговоран for this personособа.
Nisam njegov doktor,
06:11
I'm not his doctorдоктор,
nisam njegova majka,
06:13
I'm not his motherмајка,
zasigurno nisam njegov bog,
06:15
I'm certainlyсигурно not his God,
i možda je najbolji način
da pomognem i njemu i sebi
06:17
and maybe the bestнајбоље way to help him and me
da nastavim sa našim ulogama oca i ćerke.
06:21
is to resumebiografija our rolesулоге
as fatherотац and daughterћерка.
I tako smo samo sedeli,
06:25
And so we just satсат there,
mirni i tihi kao i uvek.
06:27
calmмирно and quietтихо like we'veми смо always doneГотово.
Niko nije bio produktivan.
06:30
NobodyNiko nije was productiveпродуктиван.
Oboje smo još jaki.
06:32
BothOboje of us are still strongјак.
„U redu, tata.
06:37
"OK, DadTata. I'm going to go,
Idem, ali vidimo se sutra.“
06:40
but I'll see you tomorrowсутра."
„U redu“, rekao je.
06:43
"OK," he said.
„Hej,
06:46
"Hey,
ovo je baš fina hacijenda.“
06:48
this is a prettyприлично niceлеп haciendaHaciende."
Hvala.
06:51
Thank you.
(Aplauz)
06:53
(ApplauseAplauz)
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