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

Translator: Jacob Pedersen Reviewer: Jette Thrane

I've been doing some thinking.

Jeg har tænkt over noget.

I'm going to kill my dad.

Jeg vil slå min far ihjel.

I called my sister.

Jeg ringede til min søster.

"Listen,

"Hør her,

I've been doing some thinking.

Jeg har tænkt over noget.

I'm going to kill Dad.

Jeg vil slå far ihjel.

I'm going to take him to Oregon,

Jeg vil tage ham med til Oregon,

find some heroin,

finde noget heroin,

and give it to him."

og give ham det."

My dad has frontotemporal lobe dementia,

Min far har frontotemporal demens,

or FTD.

også kaldet FTD.

It's a confusing disease that hits people in their 50s or 60s.

Det er en forvirrende sygdom som rammer folk i 50'er eller 60'erne.

It can completely change someone's personality,

Det kan ændre en persons personlighed fuldstændigt,

making them paranoid and even violent.

gøre dem paranoide og endda voldelige.

My dad's been sick for a decade,

Min far har været syg i et årti,

but three years ago he got really sick,

men for tre år siden blev han rigtigt syg,

and we had to move him out of his house --

og vi var nødt til at flytte ham ud af hans hus -

the house that I grew up in,

det hus jeg voksede op i,

the house that he built with his own hands.

det hus han byggede med sine egne hænder.

My strapping, cool dad with the falsetto singing voice

Min flotte, seje far med falset sangstemmen

had to move into a facility for round-the-clock care

var nødt til at flytte på plejehjem med døgnpleje

when he was just 65.

da han var bare 65 år.

At first my mom and sisters and I made the mistake

Min mor, mine søstre og jeg lavede den fejl,

of putting him in a regular nursing home.

at flytte ham til et almindeligt plejehjem.

It was really pretty;

Der var meget flot,

it had plush carpet and afternoon art classes

der var plystæpper, kunsttimer om eftermiddagen

and a dog named Diane.

og en hund som hed Diane.

But then I got a phone call.

Men så modtog jeg et opkald,

"Ms. Malone, we've arrested your father."

"Frk. Malone, vi har arresteret Deres far."

"What?"

"Hvad?"

"Well, he threatened everybody with cutlery.

"Altså, han truede alle med bestik.

And then he yanked the curtains off the wall,

Så rev han gardinerne ned fra væggen,

and then he tried to throw plants out the window.

og så prøvede han at smide planter ud af vinduet.

And then, well, he pulled all the old ladies out of their wheelchairs."

Og så, altså, han trak alle de gamle damer ud af kørestolene."

"All the old ladies?"

"Alle de gamle damer?"

(Laughter)

[Latter]

"What a cowboy."

"Sikke en cowboy."

(Laughter)

[Latter]

After he got kicked out of there,

Efter at han blev smidt ud derfra,

we bounced him between a bunch of state-run facilities

smed vi ham rundt mellem flere offentlige institutioner

before finding a treatment center specifically for people with dementia.

før vi fandt et behandlingscenter for folk med demens.

At first, he kind of liked it,

I starten kunne han, godt lide det,

but over time his health declined,

men hans helbred blev over tid dårligere

and one day I walked in

og en dag kom jeg ind

and found him sitting hunched over on the ground wearing a onesie --

og fandt ham foroverbøjet på gulvet, iført en heldragt -

those kinds of outfits that zip in the back.

den slagt dragter med lynlås i ryggen.

I watched him for about an hour as he yanked at it,

Jeg kiggede på ham i omkring en time, mens han hev i den,

trying to find a way out of this thing.

og prøvede at få den af.

And it's supposed to be practical,

Meningen er at den skal være praktisk,

but to me it looked like a straightjacket.

men jeg synes at det lignede en spændetrøje.

And so I ran out.

Og så løb jeg.

I left him there.

Jeg efterlod ham der.

I sat in my truck -- his old truck --

Jeg sad i min bil - hans gamle bil -

hunched over,

foroverbøjet,

this really deep guttural cry coming out of the pit of my belly.

det her dybe, gutturale skrig kom fra min maves dyb.

I just couldn't believe that my father,

Jeg kunne bare ikke tro, at min far,

the Adonis of my youth,

min ungdoms Adonis,

my really dear friend,

min virkelig kære ven,

would think that this kind of life was worth living anymore.

skulle mene at den måde at leve på, skulle være værd at leve.

We're programmed to prioritize productivity.

Vi er programmeret til at prioritere produktivitet.

So when a person -- an Adonis in this case --

Så når en person - i dette tilfælde, en Adonis -

is no longer productive in the way we expect him to be,

ikke længere er produktiv, på den måde vi forventer af ham,

the way that he expects himself to be,

den måde han selv forventer,

what value does that life have left?

hvilken værdi har det liv så tilbage?

That day in the truck,

Den dag i bilen,

all I could imagine was that my dad was being tortured

var det eneste jeg tænkte på, at min far blev tortureret

and his body was the vessel of that torture.

og hans krop var torturens beholder.

I've got to get him out of that body.

Jeg må få ham ud af den krop.

I've got to get him out of that body; I'm going to kill Dad.

Jeg må få ham ud fra den krop, jeg vil slå min far ihjel.

I call my sister.

Jeg ringer til min søster.

"Beth," she said.

"Beth," sagde hun.

"You don't want to live the rest of your life

"Du vil ikke leve resten af dit liv

knowing that you killed your father.

med tanken om at du slog din far ihjel.

And you'd be arrested I think,

Og jeg tror at du vil blive anholdt,

because he can't condone it.

da han ikke kan billige det.

And you don't even know how to buy heroin."

Og du ved ikke engang hvordan man køber heroin."

(Laughter)

[Latter]

It's true, I don't.

Hun har ret.

(Laughter)

[Latter]

The truth is we talk about his death a lot.

Sandheden er, at vi taler meget om hans død.

When will it happen? What will it be like?

Hvornår sker det? Hvordan vil det være?

But I wish that we would have talked about death when we were all healthy.

Jeg ville ønske, at vi havde talt om døden da vi alle var raske.

What does my best death look like?

Hvordan ser min bedste død ud?

What does your best death look like?

Hvordan ser din bedste død ud?

But my family didn't know to do that.

Men min familie vidste ikke hvordan.

And my sister was right.

Og min søster havde ret.

I shouldn't murder Dad with heroin,

Jeg skal ikke slå min far ihjel med heroin

but I've got to get him out of that body.

men jeg er nødt at få ham ud af den krop.

So I went to a psychic.

Jeg besøgte en clairvoyant.

And then a priest, and then a support group,

Og så en præst, og så en støttegruppe,

and they all said the same thing:

og de sagde alle det samme,

sometimes people hang on when they're worried about loved ones.

nogle folk holder fast, når de er bekymrede for deres nærmeste.

Just tell them you're safe, and it's OK to go when you're ready.

Fortæl dem at du er i sikkerhed, og at det er okay at give slip.

So I went to see Dad.

Jeg tog hen til min far.

I found him hunched over on the ground in the onesie.

Han sad foroverbøjet på gulvet iført heldragten.

He was staring past me and just kind of looking at the ground.

Han stirrede forbi mig, og så nærmest bare på gulvet.

I gave him a ginger ale

Jeg gav ham en ingefærøl

and just started talking about nothing in particular,

og begyndte bare at snakke, ikke om noget særligt,

but as I was talking, he sneezed from the ginger ale.

Men som jeg snakkede, nyste ham på grund af ingefærøllen.

And the sneeze -- it jerked his body upright,

Og det nys - gav et ryk i ham,

sparking him back to life a little bit.

og gav ham en lille gnist af livet tilbage.

And he just kept drinking and sneezing and sparking, over and over and over again

Han fortsatte med at drikke, nyse og gnistre, om og om igen

until it stopped.

indtil det stoppede.

And I heard,

Og jeg hørte,

"Heheheheheh,

"Hehehehe,

heheheheheh ...

hehehehe ...

this is so fabulous.

det her er så fantastisk.

This is so fabulous."

Det her er så fantastisk."

His eyes were open and he was looking at me,

Hans øjne var åbne og han så på mig,

and I said, "Hi, Dad!"

og jeg sagde, "Hej far!"

and he said, "Hiya, Beth."

Og han sagde, "Hejsa Beth."

And I opened my mouth to tell him, right?

Jeg åbnede munden for at fortælle ham:

"Dad, if you want to die, you can die.

"Far, hvis du har lyst til at dø, kan du godt dø.

We're all OK."

Vi er allesammen okay."

But as I opened my mouth to tell him,

Men da jeg åbnede munden,

all I could say was, "Dad!

Kunne jeg kun sige, "Far!

I miss you."

Jeg savner dig."

And then he said, "Well, I miss you, too."

Og så sagde han, "Jamen, jeg savner også dig."

And then I just fell over because I'm just a mess.

Så faldt jeg bare sammen fordi jeg er et stort rod.

So I fell over and I sat there with him

Jeg faldt sammen og sad der med ham

because for the first time in a long time he seemed kind of OK.

fordi, for første gang i lang tid, virkede han nogenlunde okay.

And I memorized his hands,

Og jeg tænkte på hans hænder,

feeling so grateful that his spirit was still attached to his body.

og var så taknemmelig for at hans sjæl stadig var i kroppen.

And in that moment I realized

Og i det øjeblik indså jeg,

I'm not responsible for this person.

at jeg ikke er ansvarlig for denne person.

I'm not his doctor,

Jeg er ikke hans læge,

I'm not his mother,

Jeg er ikke hans mor,

I'm certainly not his God,

Jeg er helt sikkert ikke hans Gud,

and maybe the best way to help him and me

og måske er den bedste måde, at hjælpe ham og mig på,

is to resume our roles as father and daughter.

at indtage vores roller som far og datter.

And so we just sat there,

Så sad vi bare der,

calm and quiet like we've always done.

stille og roligt, som vi altid har gjort.

Nobody was productive.

Ingen var produktive.

Both of us are still strong.

Vi er begge stadig stærke.

"OK, Dad. I'm going to go,

"Okay far, jeg går nu,

but I'll see you tomorrow."

men vi ses i morgen."

"OK," he said.

"Okay." sagde han.

"Hey,

"Hey,

this is a pretty nice hacienda."

det her er en ret fin landejendom."

Thank you.

Tak.

(Applause)

[Applaus]