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
TED Residency

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

貝絲.馬龍: 我爸爸的失智症如何改變了我對於死亡(及生命)的看法

Filmed:
1,258,144 views

帶著暖意和慈愛,貝絲.馬龍訴說這個非常私密的故事,談到她的爸爸因為額顳葉型失智症而在掙扎,也談到這件事如何改變了她對於死亡(和生命)的看法。這場感人的演說,談的是女兒的愛──以及放手和找到平靜。
- 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

Double-click the English transcript below to play the video.

00:12
I've been doing some thinking思維.
0
800
1640
我思考了一陣子。
00:16
I'm going to kill my dad.
1
4240
1760
我要殺了我爸爸。
00:19
I called my sister妹妹.
2
7200
1216
我打電話給我姐姐。
00:20
"Listen,
3
8440
1496
「聽著,
00:21
I've been doing some thinking思維.
4
9960
1560
我思考了一陣子。
00:24
I'm going to kill Dad.
5
12480
1840
我要殺了爸爸。
00:27
I'm going to take him to Oregon俄勒岡,
6
15480
1640
我要帶他去奧勒崗,
00:30
find some heroin海洛因,
7
18080
1896
找一些海洛因,
00:32
and give it to him."
8
20000
1240
給他用。」
00:34
My dad has frontotemporal額顳 lobe dementia癡呆,
9
22720
2136
我爸爸有額顳葉型失智症,
00:36
or FTDftd.
10
24880
1736
也就是 FTD。
00:38
It's a confusing撲朔迷離 disease疾病
that hits點擊 people in their 50s or 60s.
11
26640
2936
是種會讓人困惑的疾病,
通常在五、六十歲時發病。
00:41
It can completely全然 change更改
someone's誰家 personality個性,
12
29600
2896
它會完全改變一個人的人格,
00:44
making製造 them paranoid偏執 and even violent暴力.
13
32520
2080
讓他們偏執,甚至暴力。
00:47
My dad's爸爸的 been sick生病 for a decade,
14
35400
1936
我爸爸已經病了十年了,
00:49
but three years年份 ago he got really sick生病,
15
37360
2536
但三年前病況惡化,
00:51
and we had to move移動 him out of his house --
16
39920
2336
我們得把他帶離他的房子──
00:54
the house that I grew成長 up in,
17
42280
1936
那間房子是我長大的地方,
00:56
the house that he built內置
with his own擁有 hands.
18
44240
2000
是他自己用雙手建立起來的。
00:59
My strapping魁梧的, cool dad
with the falsetto假聲 singing唱歌 voice語音
19
47160
5216
我的魁梧酷老爸,唱歌時會用假聲,
01:04
had to move移動 into a facility設施
for round-the-clock全天候 care關心
20
52400
2429
我們得把他送到有日夜照護的機構,
01:06
when he was just 65.
21
54853
1480
那時他才 65 歲。
01:10
At first my mom媽媽 and sisters姐妹
and I made製作 the mistake錯誤
22
58960
2656
我和我媽媽及姐妹
一開始犯了一個錯誤,
01:13
of putting him in a regular定期 nursing看護 home.
23
61640
2080
把他送到一般的安養機構。
01:16
It was really pretty漂亮;
24
64599
1257
那裡很漂亮;
01:17
it had plush長毛絨 carpet地毯
and afternoon下午 art藝術 classes
25
65880
2936
有長毛絨地毯,下午有藝術課程,
01:20
and a dog named命名 Diane黛安.
26
68840
1800
還有隻叫戴安的狗。
但接著,我接到一通電話。
01:23
But then I got a phone電話 call.
27
71520
1360
01:26
"Ms女士. Malone馬龍, we've我們已經 arrested被捕 your father父親."
28
74520
3120
「馬龍小姐,
我們逮捕了你的父親。」
01:30
"What?"
29
78800
1200
「什麼?」
01:32
"Well, he threatened受威脅
everybody每個人 with cutlery刀具.
30
80760
3000
「嗯,他拿著餐刀威脅每個人。
01:36
And then he yanked猛拉
the curtains窗簾 off the wall,
31
84960
2136
接著他把牆壁上的簾子扯下來,
01:39
and then he tried試著
to throw plants植物 out the window窗口.
32
87120
2320
然後他試圖把植物丟出窗外。
01:42
And then, well, he pulled all
the old ladies女士們 out of their wheelchairs輪椅."
33
90280
4200
接著,他把所有的老太太
都從輪椅上拉下來。」
01:49
"All the old ladies女士們?"
34
97200
1376
「所有的老太太?」
01:50
(Laughter笑聲)
35
98600
1176
(笑聲)
01:51
"What a cowboy牛仔."
36
99800
1256
「好一個牛仔。」
01:53
(Laughter笑聲)
37
101080
1656
(笑聲)
01:54
After he got kicked out of there,
38
102760
1616
在他被趕出去之後,
01:56
we bounced反彈 him between之間
a bunch of state-run國營 facilities設備
39
104400
2576
我們帶他去一些公立養護中心,
他總是被攆走,
01:59
before finding發現 a treatment治療 center中央
specifically特別 for people with dementia癡呆.
40
107000
4256
最後才找到一家
專門為失智症設立的治療中心。
02:03
At first, he kind of liked喜歡 it,
41
111280
2056
一開始,他還蠻喜歡那裡的,
但隨時間過去,他的健康惡化,
02:05
but over time his health健康 declined下降,
42
113360
1936
02:07
and one day I walked in
43
115320
1256
有一天,我去那裡時,
02:08
and found發現 him sitting坐在 hunched駝背 over
on the ground地面 wearing穿著 a onesieonesie --
44
116600
4216
發現他坐在地上縮著身體,
穿著連身衣──
02:12
those kinds of outfits服裝
that zip壓縮 in the back.
45
120840
2160
背後有拉鏈的那種連身服裝。
02:17
I watched看著 him for about an hour小時
as he yanked猛拉 at it,
46
125760
3216
我看了他一個小時,
他一直在拉扯那件連身衣,
02:21
trying to find a way out of this thing.
47
129000
2400
試著要把它脫掉。
02:24
And it's supposed應該 to be practical實際的,
48
132000
2856
那本來應該是很實用的服裝,
02:26
but to me it looked看著 like a straightjacket緊身衣.
49
134880
2160
但我只覺得它看起來像緊身約束衣。
02:29
And so I ran out.
50
137760
1520
所以我跑出去了。
02:32
I left him there.
51
140520
1560
我把他丟在那裡。
02:35
I satSAT in my truck卡車 -- his old truck卡車 --
52
143440
2256
我坐在我的卡車裡──
那是他的老卡車──
02:37
hunched駝背 over,
53
145720
1616
彎著身,
02:39
this really deep guttural喉音 cry
coming未來 out of the pit of my belly肚皮.
54
147360
3200
從我的內心深處發出粗啞的哭聲。
02:43
I just couldn't不能 believe that my father父親,
55
151480
2880
我就是無法相信,我的父親,
我年輕時的阿多尼斯,
(註:希臘神話中的美少年)
02:47
the Adonis尼斯 of my youth青年,
56
155880
1920
02:50
my really dear friend朋友,
57
158960
1760
我親愛的朋友,
02:53
would think that this kind of life
was worth價值 living活的 anymore.
58
161640
2920
會認為這樣的生命還值得活下去。
02:58
We're programmed程序
to prioritize優先 productivity生產率.
59
166520
2760
我們天生就是會
把生產力排到高優先順序。
03:02
So when a person --
an Adonis尼斯 in this case案件 --
60
170720
3336
所以當一個人──
在這個例子中是阿多尼斯──
03:06
is no longer productive生產的
in the way we expect期望 him to be,
61
174080
3656
不再有我們期待他應該有的生產力,
不再有他期待他自己
該有的生產力時,
03:09
the way that he expects預計 himself他自己 to be,
62
177760
1840
03:12
what value does that life have left?
63
180600
2360
那樣的生命還剩什麼價值?
03:15
That day in the truck卡車,
64
183640
1856
那天,在卡車裡,
03:17
all I could imagine想像
was that my dad was being存在 tortured折磨
65
185520
4176
我能想像的只有我爸爸正受到虐待,
03:21
and his body身體 was
the vessel船隻 of that torture拷打.
66
189720
2960
而他的身體就是那虐待他的容器。
03:26
I've got to get him out of that body身體.
67
194040
1800
我得把他從那身體中救出來。
03:28
I've got to get him out of that body身體;
I'm going to kill Dad.
68
196600
2840
我得把他從那身體中救出來;
我要殺了我爸爸。
03:32
I call my sister妹妹.
69
200600
1240
我打電話給我姐姐。
03:35
"Beth貝絲," she said.
70
203400
1800
「貝絲,」她說。
「你不會想要帶著
你殺了自己爸爸的記憶
03:40
"You don't want
to live生活 the rest休息 of your life
71
208800
2136
03:42
knowing會心 that you killed殺害 your father父親.
72
210960
1816
度過你的下半輩子。
03:44
And you'd be arrested被捕 I think,
73
212800
2096
且我認為你會被逮捕,
因為他無法縱容你做這事。
03:46
because he can't condone縱容 it.
74
214920
1576
03:48
And you don't even know
how to buy購買 heroin海洛因."
75
216520
2256
而且你甚至不知道去哪買海洛因。」
03:50
(Laughter笑聲)
76
218800
1016
(笑聲)
03:51
It's true真正, I don't.
77
219840
1256
是真的,我不知道。
03:53
(Laughter笑聲)
78
221120
1360
(笑聲)
03:56
The truth真相 is we talk
about his death死亡 a lot.
79
224200
2056
事實是,我們常常談他的死亡。
03:58
When will it happen發生? What will it be like?
80
226280
2000
何時會發生?會是怎樣的情況?
04:00
But I wish希望 that we would have talked
about death死亡 when we were all healthy健康.
81
228304
4072
但我希望我們在大家都健康時
就已經談論過死亡。
04:04
What does my best最好 death死亡 look like?
82
232400
2480
我最好的死亡會是什麼樣子的?
04:07
What does your best最好 death死亡 look like?
83
235880
2080
你最好的死亡會是什麼樣子的?
但我的家人之前不知道要那麼做。
04:10
But my family家庭 didn't know to do that.
84
238840
2000
04:13
And my sister妹妹 was right.
85
241680
1520
我姐姐是對的。
04:15
I shouldn't不能 murder謀殺 Dad with heroin海洛因,
86
243800
1960
我不該用海洛因來謀殺我爸爸,
04:18
but I've got to get him out of that body身體.
87
246800
1960
但我得把他從他的身體中救出來。
04:22
So I went to a psychic精神.
88
250560
1360
所以我去找靈媒。
04:24
And then a priest牧師,
and then a support支持 group,
89
252760
2096
接著去找牧師,然後是支持團體,
04:26
and they all said the same相同 thing:
90
254880
1615
他們都說一樣的話:
有時,人們不願離開
是因為他們擔心他們愛的人。
04:28
sometimes有時 people hang on
when they're worried擔心 about loved喜愛 ones那些.
91
256519
3097
04:31
Just tell them you're safe安全,
and it's OK to go when you're ready準備.
92
259640
3200
只要告訴他們你很安全,
準備好了就可以離開,沒關係的。
04:35
So I went to see Dad.
93
263600
1240
所以我去看爸爸。
04:37
I found發現 him hunched駝背 over
on the ground地面 in the onesieonesie.
94
265840
2496
我發現他穿著連身衣,
曲身坐在地上。
04:40
He was staring凝視 past過去 me
and just kind of looking at the ground地面.
95
268360
3016
他的視線穿過我,像是看著地板。
我給他一瓶薑汁汽水,
04:43
I gave him a ginger生薑 ale麥酒
96
271400
1256
04:44
and just started開始 talking
about nothing in particular特定,
97
272680
2616
開始說話,沒聊什麼特別的,
04:47
but as I was talking,
he sneezed打個噴嚏 from the ginger生薑 ale麥酒.
98
275320
3920
但當我在說話時,
他因為薑汁汽水而打噴嚏。
04:52
And the sneeze噴嚏 --
it jerked猛地 his body身體 upright直立,
99
280000
3616
而那噴嚏讓他的身體突然被拉直,
04:55
sparking火花 him back to life a little bit.
100
283640
1936
稍稍讓他有一點生命的火花。
04:57
And he just kept不停 drinking and sneezing打噴嚏
and sparking火花, over and over and over again
101
285600
5176
他只是不斷喝汽水和打噴嚏,
然後有一點火花,一次又一次,
05:02
until直到 it stopped停止.
102
290800
1560
直到停止。
05:05
And I heard聽說,
103
293280
1200
而我聽到了,
05:07
"HehehehehehHeheheheheh,
104
295440
1856
「嘿嘿嘿嘿嘿,
05:09
hehehehehehheheheheheh ...
105
297320
2736
嘿嘿嘿嘿嘿……
05:12
this is so fabulous極好.
106
300080
2680
這實在太棒了。
05:15
This is so fabulous極好."
107
303760
2160
這實在太棒了。」
05:18
His eyes眼睛 were open打開
and he was looking at me,
108
306480
2816
他的眼睛打開了,他看著我,
05:21
and I said, "Hi你好, Dad!"
109
309320
1856
我說:「嗨,爸爸!」
05:23
and he said, "Hiya你好, Beth貝絲."
110
311200
2980
而他說:「你好啊,貝絲。」
05:27
And I opened打開 my mouth to tell him, right?
111
315480
1976
而我要張開口,告訴他:
05:29
"Dad, if you want to die, you can die.
112
317480
2576
「爸,如果你想要死,你可以。
05:32
We're all OK."
113
320080
1240
我們都會沒事的。」對吧?
05:33
But as I opened打開 my mouth to tell him,
114
321960
1816
但當我張開口要告訴他時,
05:35
all I could say was, "Dad!
115
323800
1440
我能說的只有:「爸!
05:40
I miss小姐 you."
116
328160
1440
我好想你。」
05:42
And then he said, "Well, I miss小姐 you, too."
117
330160
2736
接著他說:「我也好想你。」
05:44
And then I just fell下跌 over
because I'm just a mess食堂.
118
332920
2696
然後我就跌坐下來了,
因為我是一團糟。
05:47
So I fell下跌 over and I satSAT there with him
119
335640
3240
我跌坐下來,我和他坐在那裡,
05:52
because for the first time in a long time
he seemed似乎 kind of OK.
120
340680
2960
因為這麼久以來,
他第一次看起來似乎很好。
05:56
And I memorized記憶 his hands,
121
344840
2656
我記著他的手,
05:59
feeling感覺 so grateful感激 that his spirit精神
was still attached to his body身體.
122
347520
4480
非常感恩他的心靈
還和他的身體連結在一起。
06:05
And in that moment時刻 I realized實現
123
353400
1920
在那一刻,我了解到,
06:08
I'm not responsible主管 for this person.
124
356120
2120
我不用對這個人負責。
06:11
I'm not his doctor醫生,
125
359560
1496
我不是他的醫生,
06:13
I'm not his mother母親,
126
361080
1280
我不是他的母親,
06:15
I'm certainly當然 not his God,
127
363160
2336
我肯定不是他的神,
06:17
and maybe the best最好 way to help him and me
128
365520
3736
也許,幫助他和我最好的方式,
06:21
is to resume恢復 our roles角色
as father父親 and daughter女兒.
129
369280
2800
就是繼續扮演我們的父女角色。
06:25
And so we just satSAT there,
130
373360
1360
所以我們就坐在那裡,
06:27
calm冷靜 and quiet安靜 like we've我們已經 always doneDONE.
131
375440
2576
像過去一直以來那樣,沉靜、安靜。
06:30
Nobody沒有人 was productive生產的.
132
378040
1400
沒有人有生產力。
06:32
Both of us are still strong強大.
133
380800
1520
我們兩個人都還很堅強。
06:37
"OK, Dad. I'm going to go,
134
385240
3056
「好了,爸,我要走了,
06:40
but I'll see you tomorrow明天."
135
388320
1286
但我明天會再來看你。」
06:43
"OK," he said.
136
391360
1640
「好,」他說。
06:46
"Hey,
137
394880
1200
「嘿,
06:48
this is a pretty漂亮 nice不錯 hacienda牧場."
138
396920
1880
這是個挺好的大莊園。」
06:51
Thank you.
139
399960
1216
謝謝。
06:53
(Applause掌聲)
140
401200
4280
(掌聲)
Translated by Lilian Chiu
Reviewed by Marssi Draw

▲Back to top

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