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

86,951 views ・ 2017-12-07

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Translator: Jacob Pedersen Reviewer: Jette Thrane
00:12
I've been doing some thinking.
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Jeg har tænkt over noget.
00:16
I'm going to kill my dad.
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Jeg vil slå min far ihjel.
00:19
I called my sister.
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Jeg ringede til min søster.
00:20
"Listen,
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"Hør her,
00:21
I've been doing some thinking.
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Jeg har tænkt over noget.
00:24
I'm going to kill Dad.
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Jeg vil slå far ihjel.
00:27
I'm going to take him to Oregon,
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Jeg vil tage ham med til Oregon,
00:30
find some heroin,
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finde noget heroin,
00:32
and give it to him."
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og give ham det."
00:34
My dad has frontotemporal lobe dementia,
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Min far har frontotemporal demens,
00:36
or FTD.
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også kaldet FTD.
00:38
It's a confusing disease that hits people in their 50s or 60s.
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Det er en forvirrende sygdom som rammer folk i 50'er eller 60'erne.
00:41
It can completely change someone's personality,
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Det kan ændre en persons personlighed fuldstændigt,
00:44
making them paranoid and even violent.
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gøre dem paranoide og endda voldelige.
00:47
My dad's been sick for a decade,
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Min far har været syg i et årti,
00:49
but three years ago he got really sick,
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men for tre år siden blev han rigtigt syg,
00:51
and we had to move him out of his house --
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og vi var nødt til at flytte ham ud af hans hus -
00:54
the house that I grew up in,
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det hus jeg voksede op i,
00:56
the house that he built with his own hands.
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det hus han byggede med sine egne hænder.
00:59
My strapping, cool dad with the falsetto singing voice
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Min flotte, seje far med falset sangstemmen
01:04
had to move into a facility for round-the-clock care
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var nødt til at flytte på plejehjem med døgnpleje
01:06
when he was just 65.
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da han var bare 65 år.
01:10
At first my mom and sisters and I made the mistake
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Min mor, mine søstre og jeg lavede den fejl,
01:13
of putting him in a regular nursing home.
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at flytte ham til et almindeligt plejehjem.
01:16
It was really pretty;
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Der var meget flot,
01:17
it had plush carpet and afternoon art classes
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der var plystæpper, kunsttimer om eftermiddagen
01:20
and a dog named Diane.
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og en hund som hed Diane.
01:23
But then I got a phone call.
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Men så modtog jeg et opkald,
01:26
"Ms. Malone, we've arrested your father."
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"Frk. Malone, vi har arresteret Deres far."
01:30
"What?"
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"Hvad?"
01:32
"Well, he threatened everybody with cutlery.
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"Altså, han truede alle med bestik.
01:36
And then he yanked the curtains off the wall,
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Så rev han gardinerne ned fra væggen,
01:39
and then he tried to throw plants out the window.
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og så prøvede han at smide planter ud af vinduet.
01:42
And then, well, he pulled all the old ladies out of their wheelchairs."
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Og så, altså, han trak alle de gamle damer ud af kørestolene."
01:49
"All the old ladies?"
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"Alle de gamle damer?"
01:50
(Laughter)
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[Latter]
01:51
"What a cowboy."
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"Sikke en cowboy."
01:53
(Laughter)
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[Latter]
01:54
After he got kicked out of there,
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Efter at han blev smidt ud derfra,
01:56
we bounced him between a bunch of state-run facilities
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smed vi ham rundt mellem flere offentlige institutioner
01:59
before finding a treatment center specifically for people with dementia.
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før vi fandt et behandlingscenter for folk med demens.
02:03
At first, he kind of liked it,
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I starten kunne han, godt lide det,
02:05
but over time his health declined,
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men hans helbred blev over tid dårligere
02:07
and one day I walked in
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og en dag kom jeg ind
02:08
and found him sitting hunched over on the ground wearing a onesie --
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og fandt ham foroverbøjet på gulvet, iført en heldragt -
02:12
those kinds of outfits that zip in the back.
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den slagt dragter med lynlås i ryggen.
02:17
I watched him for about an hour as he yanked at it,
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Jeg kiggede på ham i omkring en time, mens han hev i den,
02:21
trying to find a way out of this thing.
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og prøvede at få den af.
02:24
And it's supposed to be practical,
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Meningen er at den skal være praktisk,
02:26
but to me it looked like a straightjacket.
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men jeg synes at det lignede en spændetrøje.
02:29
And so I ran out.
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Og så løb jeg.
02:32
I left him there.
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Jeg efterlod ham der.
02:35
I sat in my truck -- his old truck --
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Jeg sad i min bil - hans gamle bil -
02:37
hunched over,
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foroverbøjet,
02:39
this really deep guttural cry coming out of the pit of my belly.
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det her dybe, gutturale skrig kom fra min maves dyb.
02:43
I just couldn't believe that my father,
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Jeg kunne bare ikke tro, at min far,
02:47
the Adonis of my youth,
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min ungdoms Adonis,
02:50
my really dear friend,
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min virkelig kære ven,
02:53
would think that this kind of life was worth living anymore.
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skulle mene at den måde at leve på, skulle være værd at leve.
02:58
We're programmed to prioritize productivity.
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Vi er programmeret til at prioritere produktivitet.
03:02
So when a person -- an Adonis in this case --
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Så når en person - i dette tilfælde, en Adonis -
03:06
is no longer productive in the way we expect him to be,
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ikke længere er produktiv, på den måde vi forventer af ham,
03:09
the way that he expects himself to be,
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den måde han selv forventer,
03:12
what value does that life have left?
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hvilken værdi har det liv så tilbage?
03:15
That day in the truck,
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Den dag i bilen,
03:17
all I could imagine was that my dad was being tortured
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var det eneste jeg tænkte på, at min far blev tortureret
03:21
and his body was the vessel of that torture.
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og hans krop var torturens beholder.
03:26
I've got to get him out of that body.
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Jeg må få ham ud af den krop.
03:28
I've got to get him out of that body; I'm going to kill Dad.
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Jeg må få ham ud fra den krop, jeg vil slå min far ihjel.
03:32
I call my sister.
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Jeg ringer til min søster.
03:35
"Beth," she said.
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"Beth," sagde hun.
03:40
"You don't want to live the rest of your life
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"Du vil ikke leve resten af dit liv
03:42
knowing that you killed your father.
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med tanken om at du slog din far ihjel.
03:44
And you'd be arrested I think,
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Og jeg tror at du vil blive anholdt,
03:46
because he can't condone it.
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da han ikke kan billige det.
03:48
And you don't even know how to buy heroin."
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Og du ved ikke engang hvordan man køber heroin."
03:50
(Laughter)
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[Latter]
03:51
It's true, I don't.
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Hun har ret.
03:53
(Laughter)
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[Latter]
03:56
The truth is we talk about his death a lot.
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Sandheden er, at vi taler meget om hans død.
03:58
When will it happen? What will it be like?
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Hvornår sker det? Hvordan vil det være?
04:00
But I wish that we would have talked about death when we were all healthy.
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Jeg ville ønske, at vi havde talt om døden da vi alle var raske.
04:04
What does my best death look like?
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Hvordan ser min bedste død ud?
04:07
What does your best death look like?
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Hvordan ser din bedste død ud?
04:10
But my family didn't know to do that.
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Men min familie vidste ikke hvordan.
04:13
And my sister was right.
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Og min søster havde ret.
04:15
I shouldn't murder Dad with heroin,
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Jeg skal ikke slå min far ihjel med heroin
04:18
but I've got to get him out of that body.
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men jeg er nødt at få ham ud af den krop.
04:22
So I went to a psychic.
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Jeg besøgte en clairvoyant.
04:24
And then a priest, and then a support group,
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Og så en præst, og så en støttegruppe,
04:26
and they all said the same thing:
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og de sagde alle det samme,
04:28
sometimes people hang on when they're worried about loved ones.
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nogle folk holder fast, når de er bekymrede for deres nærmeste.
04:31
Just tell them you're safe, and it's OK to go when you're ready.
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Fortæl dem at du er i sikkerhed, og at det er okay at give slip.
04:35
So I went to see Dad.
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Jeg tog hen til min far.
04:37
I found him hunched over on the ground in the onesie.
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Han sad foroverbøjet på gulvet iført heldragten.
04:40
He was staring past me and just kind of looking at the ground.
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Han stirrede forbi mig, og så nærmest bare på gulvet.
04:43
I gave him a ginger ale
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Jeg gav ham en ingefærøl
04:44
and just started talking about nothing in particular,
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og begyndte bare at snakke, ikke om noget særligt,
04:47
but as I was talking, he sneezed from the ginger ale.
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Men som jeg snakkede, nyste ham på grund af ingefærøllen.
04:52
And the sneeze -- it jerked his body upright,
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Og det nys - gav et ryk i ham,
04:55
sparking him back to life a little bit.
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og gav ham en lille gnist af livet tilbage.
04:57
And he just kept drinking and sneezing and sparking, over and over and over again
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Han fortsatte med at drikke, nyse og gnistre, om og om igen
05:02
until it stopped.
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indtil det stoppede.
05:05
And I heard,
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Og jeg hørte,
05:07
"Heheheheheh,
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"Hehehehe,
05:09
heheheheheh ...
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hehehehe ...
05:12
this is so fabulous.
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det her er så fantastisk.
05:15
This is so fabulous."
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Det her er så fantastisk."
05:18
His eyes were open and he was looking at me,
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Hans øjne var åbne og han så på mig,
05:21
and I said, "Hi, Dad!"
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og jeg sagde, "Hej far!"
05:23
and he said, "Hiya, Beth."
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Og han sagde, "Hejsa Beth."
05:27
And I opened my mouth to tell him, right?
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Jeg åbnede munden for at fortælle ham:
05:29
"Dad, if you want to die, you can die.
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"Far, hvis du har lyst til at dø, kan du godt dø.
05:32
We're all OK."
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Vi er allesammen okay."
05:33
But as I opened my mouth to tell him,
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Men da jeg åbnede munden,
05:35
all I could say was, "Dad!
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Kunne jeg kun sige, "Far!
05:40
I miss you."
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Jeg savner dig."
05:42
And then he said, "Well, I miss you, too."
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Og så sagde han, "Jamen, jeg savner også dig."
05:44
And then I just fell over because I'm just a mess.
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Så faldt jeg bare sammen fordi jeg er et stort rod.
05:47
So I fell over and I sat there with him
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Jeg faldt sammen og sad der med ham
05:52
because for the first time in a long time he seemed kind of OK.
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fordi, for første gang i lang tid, virkede han nogenlunde okay.
05:56
And I memorized his hands,
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Og jeg tænkte på hans hænder,
05:59
feeling so grateful that his spirit was still attached to his body.
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og var så taknemmelig for at hans sjæl stadig var i kroppen.
06:05
And in that moment I realized
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Og i det øjeblik indså jeg,
06:08
I'm not responsible for this person.
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at jeg ikke er ansvarlig for denne person.
06:11
I'm not his doctor,
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Jeg er ikke hans læge,
06:13
I'm not his mother,
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Jeg er ikke hans mor,
06:15
I'm certainly not his God,
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Jeg er helt sikkert ikke hans Gud,
06:17
and maybe the best way to help him and me
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og måske er den bedste måde, at hjælpe ham og mig på,
06:21
is to resume our roles as father and daughter.
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at indtage vores roller som far og datter.
06:25
And so we just sat there,
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Så sad vi bare der,
06:27
calm and quiet like we've always done.
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stille og roligt, som vi altid har gjort.
06:30
Nobody was productive.
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Ingen var produktive.
06:32
Both of us are still strong.
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Vi er begge stadig stærke.
06:37
"OK, Dad. I'm going to go,
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"Okay far, jeg går nu,
06:40
but I'll see you tomorrow."
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men vi ses i morgen."
06:43
"OK," he said.
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"Okay." sagde han.
06:46
"Hey,
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"Hey,
06:48
this is a pretty nice hacienda."
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det her er en ret fin landejendom."
06:51
Thank you.
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Tak.
06:53
(Applause)
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[Applaus]
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