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Beth Malone: How my dad's dementia changed my idea of death (and life)
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With warmth and grace, Beth Malone tells the deeply personal story of her dad's struggle with frontotemporal lobe dementia, and how it changed how she thinks about death (and life). A moving talk about a daughter's love -- and of letting go and finding peace.
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.
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I've been doing some thinking.
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I'm going to kill my dad.
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I called my sister.
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"Listen,
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I've been doing some thinking.
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I'm going to kill Dad.
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I'm going to take him to Oregon,
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find some heroin,
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and give it to him."
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My dad has frontotemporal lobe dementia,
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or FTD.
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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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It can completely change
someone's personality,
someone's personality,
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making them paranoid and even violent.
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My dad's been sick for a decade,
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but three years ago he got really sick,
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and we had to move him out of his house --
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the house that I grew up in,
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the house that he built
with his own hands.
with his own hands.
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My strapping, cool dad
with the falsetto singing voice
with the falsetto singing voice
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had to move into a facility
for round-the-clock care
for round-the-clock care
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when he was just 65.
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At first my mom and sisters
and I made the mistake
and I made the mistake
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of putting him in a regular nursing home.
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It was really pretty;
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it had plush carpet
and afternoon art classes
and afternoon art classes
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and a dog named Diane.
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But then I got a phone call.
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"Ms. Malone, we've arrested your father."
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"What?"
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"Well, he threatened
everybody with cutlery.
everybody with cutlery.
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And then he yanked
the curtains off the wall,
the curtains off the wall,
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and then he tried
to throw plants out the window.
to throw plants out the window.
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And then, well, he pulled all
the old ladies out of their wheelchairs."
the old ladies out of their wheelchairs."
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"All the old ladies?"
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(Laughter)
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"What a cowboy."
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(Laughter)
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After he got kicked out of there,
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we bounced him between
a bunch of state-run facilities
a bunch of state-run facilities
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before finding a treatment center
specifically for people with dementia.
specifically for people with dementia.
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At first, he kind of liked it,
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but over time his health declined,
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and one day I walked in
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and found him sitting hunched over
on the ground wearing a onesie --
on the ground wearing a onesie --
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those kinds of outfits
that zip in the back.
that zip in the back.
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I watched him for about an hour
as he yanked at it,
as he yanked at it,
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trying to find a way out of this thing.
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And it's supposed to be practical,
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but to me it looked like a straightjacket.
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And so I ran out.
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I left him there.
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I sat in my truck -- his old truck --
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hunched over,
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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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I just couldn't believe that my father,
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the Adonis of my youth,
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my really dear friend,
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would think that this kind of life
was worth living anymore.
was worth living anymore.
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We're programmed
to prioritize productivity.
to prioritize productivity.
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So when a person --
an Adonis in this case --
an Adonis in this case --
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is no longer productive
in the way we expect him to be,
in the way we expect him to be,
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the way that he expects himself to be,
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what value does that life have left?
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That day in the truck,
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all I could imagine
was that my dad was being tortured
was that my dad was being tortured
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and his body was
the vessel of that torture.
the vessel of that torture.
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I've got to get him out of that body.
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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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I call my sister.
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"Beth," she said.
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"You don't want
to live the rest of your life
to live the rest of your life
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knowing that you killed your father.
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And you'd be arrested I think,
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because he can't condone it.
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And you don't even know
how to buy heroin."
how to buy heroin."
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(Laughter)
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It's true, I don't.
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(Laughter)
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The truth is we talk
about his death a lot.
about his death a lot.
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When will it happen? What will it be like?
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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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What does my best death look like?
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What does your best death look like?
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But my family didn't know to do that.
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And my sister was right.
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I shouldn't murder Dad with heroin,
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but I've got to get him out of that body.
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So I went to a psychic.
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And then a priest,
and then a support group,
and then a support group,
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and they all said the same thing:
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sometimes people hang on
when they're worried about loved ones.
when they're worried about loved ones.
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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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So I went to see Dad.
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I found him hunched over
on the ground in the onesie.
on the ground in the onesie.
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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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I gave him a ginger ale
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and just started talking
about nothing in particular,
about nothing in particular,
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but as I was talking,
he sneezed from the ginger ale.
he sneezed from the ginger ale.
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And the sneeze --
it jerked his body upright,
it jerked his body upright,
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sparking him back to life a little bit.
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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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until it stopped.
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And I heard,
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"Heheheheheh,
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heheheheheh ...
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this is so fabulous.
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This is so fabulous."
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His eyes were open
and he was looking at me,
and he was looking at me,
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and I said, "Hi, Dad!"
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and he said, "Hiya, Beth."
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And I opened my mouth to tell him, right?
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"Dad, if you want to die, you can die.
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We're all OK."
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But as I opened my mouth to tell him,
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all I could say was, "Dad!
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I miss you."
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And then he said, "Well, I miss you, too."
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And then I just fell over
because I'm just a mess.
because I'm just a mess.
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So I fell over and I sat there with him
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because for the first time in a long time
he seemed kind of OK.
he seemed kind of OK.
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And I memorized his hands,
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feeling so grateful that his spirit
was still attached to his body.
was still attached to his body.
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And in that moment I realized
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I'm not responsible for this person.
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I'm not his doctor,
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I'm not his mother,
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I'm certainly not his God,
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and maybe the best way to help him and me
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is to resume our roles
as father and daughter.
as father and daughter.
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And so we just sat there,
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calm and quiet like we've always done.
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Nobody was productive.
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Both of us are still strong.
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"OK, Dad. I'm going to go,
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but I'll see you tomorrow."
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"OK," he said.
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"Hey,
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this is a pretty nice hacienda."
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Thank you.
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(Applause)
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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