TED Residency
Beth Malone: How my dad's dementia changed my idea of death (and life)
Beth Malone: Hvordan min fars demens ændrede min indstilling til døden (og livet)
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Med varme og ynde, fortæller Beth Malone den dybt personlige historie, om hendes fars kamp med frontotemporal demens, og hvordan det ændrede på hendes tanker om døden (og livet). Et bevægende foredrag om en datters kærlighed - og om at give slip og finde fred.
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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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,
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.
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.
som rammer folk i 50'er eller 60'erne.
00:41
It can completely change
someone's personality,
someone's personality,
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Det kan ændre en persons
personlighed fuldstændigt,
personlighed fuldstændigt,
00:44
making them paranoid and even violent.
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gøre dem paranoide
og endda voldelige.
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,
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 -
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.
with his own hands.
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det hus han byggede med sine
egne hænder.
egne hænder.
00:59
My strapping, cool dad
with the falsetto singing voice
with the falsetto singing voice
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Min flotte, seje far med falset
sangstemmen
sangstemmen
01:04
had to move into a facility
for round-the-clock care
for round-the-clock care
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var nødt til at flytte på plejehjem
med døgnpleje
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
and I made the mistake
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Min mor, mine søstre og jeg lavede
den fejl,
den fejl,
01:13
of putting him in a regular nursing home.
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at flytte ham til et almindeligt
plejehjem.
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
and afternoon art classes
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der var plystæpper, kunsttimer
om eftermiddagen
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."
Deres far."
01:30
"What?"
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"Hvad?"
01:32
"Well, he threatened
everybody with cutlery.
everybody with cutlery.
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"Altså, han truede alle med bestik.
01:36
And then he yanked
the curtains off the wall,
the curtains off the wall,
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Så rev han gardinerne ned
fra væggen,
fra væggen,
01:39
and then he tried
to throw plants out the window.
to throw plants out the window.
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og så prøvede han at smide
planter ud af vinduet.
planter ud af vinduet.
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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Og så, altså, han trak alle
de gamle damer ud af kørestolene."
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
a bunch of state-run facilities
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smed vi ham rundt mellem flere
offentlige institutioner
offentlige institutioner
01:59
before finding a treatment center
specifically for people with dementia.
specifically for people with dementia.
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før vi fandt et behandlingscenter
for folk med demens.
for folk med demens.
02:03
At first, he kind of liked it,
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I starten kunne han,
godt lide det,
godt lide det,
02:05
but over time his health declined,
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men hans helbred blev over
tid dårligere
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 --
on the ground wearing a onesie --
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og fandt ham foroverbøjet på gulvet,
iført en heldragt -
iført en heldragt -
02:12
those kinds of outfits
that zip in the back.
that zip in the back.
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den slagt dragter med
lynlås i ryggen.
lynlås i ryggen.
02:17
I watched him for about an hour
as he yanked at it,
as he yanked at it,
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Jeg kiggede på ham i omkring
en time, mens han hev i den,
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.
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 -
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.
coming out of the pit of my belly.
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det her dybe, gutturale skrig
kom fra min maves dyb.
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,
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.
was worth living anymore.
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skulle mene at den måde at leve på,
skulle være værd at leve.
skulle være værd at leve.
02:58
We're programmed
to prioritize productivity.
to prioritize productivity.
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Vi er programmeret til at
prioritere produktivitet.
prioritere produktivitet.
03:02
So when a person --
an Adonis in this case --
an Adonis in this case --
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Så når en person -
i dette tilfælde, en Adonis -
i dette tilfælde, en Adonis -
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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ikke længere er produktiv,
på den måde vi forventer af ham,
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
was that my dad was being tortured
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var det eneste jeg tænkte på,
at min far blev tortureret
at min far blev tortureret
03:21
and his body was
the vessel of that torture.
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.
I'm going to kill Dad.
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Jeg må få ham ud fra den krop,
jeg vil slå min far ihjel.
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
to live the rest of your life
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"Du vil ikke leve
resten af dit liv
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.
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."
how to buy heroin."
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Og du ved ikke engang
hvordan man køber heroin."
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.
about his death a lot.
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Sandheden er, at vi taler
meget om hans død.
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?
Hvordan vil det være?
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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Jeg ville ønske, at vi havde talt om døden
da vi alle var raske.
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.
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
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,
and then a support group,
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Og så en præst,
og så en støttegruppe,
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.
when they're worried about loved ones.
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nogle folk holder fast,
når de er bekymrede for deres nærmeste.
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.
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.
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.
on the ground in the onesie.
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Han sad foroverbøjet
på gulvet iført heldragten.
på gulvet iført heldragten.
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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Han stirrede forbi mig,
og så nærmest bare på gulvet.
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,
about nothing in particular,
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og begyndte bare at snakke,
ikke om noget særligt,
ikke om noget særligt,
04:47
but as I was talking,
he sneezed from the ginger ale.
he sneezed from the ginger ale.
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Men som jeg snakkede,
nyste ham på grund af ingefærøllen.
nyste ham på grund af ingefærøllen.
04:52
And the sneeze --
it jerked his body upright,
it jerked his body upright,
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Og det nys -
gav et ryk i ham,
gav et ryk i ham,
og gav ham en lille gnist
af livet tilbage.
af livet tilbage.
04:55
sparking him back to life a little bit.
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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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Han fortsatte med at drikke, nyse
og gnistre, om og om igen
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,
and he was looking at me,
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Hans øjne var åbne
og han så på mig,
og han så på mig,
05:21
and I said, "Hi, Dad!"
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og jeg sagde,
"Hej far!"
"Hej far!"
05:23
and he said, "Hiya, Beth."
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Og han sagde,
"Hejsa Beth."
"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.
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!
"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."
jeg savner også dig."
05:44
And then I just fell over
because I'm just a mess.
because I'm just a mess.
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Så faldt jeg bare sammen
fordi jeg er et stort rod.
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
og sad der med ham
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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fordi, for første gang i lang tid,
virkede han nogenlunde okay.
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.
was still attached to his body.
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og var så taknemmelig for
at hans sjæl stadig var i kroppen.
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.
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,
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,
at hjælpe ham og mig på,
06:21
is to resume our roles
as father and daughter.
as father and daughter.
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at indtage vores roller
som far og datter.
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.
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."
landejendom."
06:51
Thank you.
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Tak.
06:53
(Applause)
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[Applaus]
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