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Dying with an End of Life Doula | Mariana Luz | TEDxShelburneFalls


as long as I can remember I’ve always

as long as I can remember I’ve always been fascinated by Big Ideas sort of

been fascinated by Big Ideas sort of

been fascinated by Big Ideas sort of mystical stuff like why are we here

mystical stuff like why are we here

mystical stuff like why are we here what’s my purpose in life where do we go

what’s my purpose in life where do we go

what’s my purpose in life where do we go when we die

when we die

when we die things like that now I’m still thinking

things like that now I’m still thinking

things like that now I’m still thinking about those things and as a student of

about those things and as a student of

about those things and as a student of Buddhism

Buddhism

Buddhism sometimes I’m around people who give me

sometimes I’m around people who give me

sometimes I’m around people who give me some clues I was at a talk recently and

some clues I was at a talk recently and

some clues I was at a talk recently and one of the teachers was talking about

one of the teachers was talking about

one of the teachers was talking about the the suffering the root of all

the the suffering the root of all

the the suffering the root of all suffering which is attachment grasping

suffering which is attachment grasping

suffering which is attachment grasping now just as an illustration of this I

now just as an illustration of this I

now just as an illustration of this I look at my cell phone like many many

look at my cell phone like many many

look at my cell phone like many many many times a day and I read research

many times a day and I read research

many times a day and I read research recently that says that you know we’re

recently that says that you know we’re

recently that says that you know we’re looking at our cell phones over a

looking at our cell phones over a

looking at our cell phones over a hundred times a day

hundred times a day

hundred times a day no since I’ve read that I think about it

no since I’ve read that I think about it

no since I’ve read that I think about it now when I look at my cell phone

now when I look at my cell phone

now when I look at my cell phone sometimes I’m really looking for an

sometimes I’m really looking for an

sometimes I’m really looking for an answer to a question that I asked or a

answer to a question that I asked or a

answer to a question that I asked or a response most of the time I’m escaping

response most of the time I’m escaping

response most of the time I’m escaping from something what is it that I’m

from something what is it that I’m

from something what is it that I’m escaping from is that that awkward

escaping from is that that awkward

escaping from is that that awkward silence when you’re in a room and no

silence when you’re in a room and no

silence when you’re in a room and no one’s talking is it that void inside

one’s talking is it that void inside

one’s talking is it that void inside well my teacher says that what we’re

well my teacher says that what we’re

well my teacher says that what we’re escaping from is the fear of being alone

escaping from is the fear of being alone

escaping from is the fear of being alone and ultimately the fear of death so

and ultimately the fear of death so

and ultimately the fear of death so that’s something to really think about

that’s something to really think about

that’s something to really think about when you go to look at your cell phone

when you go to look at your cell phone

when you go to look at your cell phone now now death is something that was part

now now death is something that was part

now now death is something that was part of everyday life until a few generations

of everyday life until a few generations

of everyday life until a few generations ago even in my grandmother’s day in this

ago even in my grandmother’s day in this

ago even in my grandmother’s day in this culture it’s really changed now death is

culture it’s really changed now death is

culture it’s really changed now death is not something that we see on a

not something that we see on a

not something that we see on a day-to-day basis for the most part it’s

day-to-day basis for the most part it’s

day-to-day basis for the most part it’s removed its medicalised we have our

removed its medicalised we have our

removed its medicalised we have our elders move into a long-term care

elders move into a long-term care

elders move into a long-term care facility or a nursing home where they

facility or a nursing home where they

facility or a nursing home where they pass away peacefully and we never see

pass away peacefully and we never see

pass away peacefully and we never see them again

them again

them again or there’s a medical emergency or rushed

or there’s a medical emergency or rushed

or there’s a medical emergency or rushed to the hospital all kinds of medical

to the hospital all kinds of medical

to the hospital all kinds of medical procedures are done last-ditch efforts

procedures are done last-ditch efforts

procedures are done last-ditch efforts to save your life now the medical

to save your life now the medical

to save your life now the medical establishment is trained to do that

establishment is trained to do that

establishment is trained to do that doctors nurses they’re trained to save

doctors nurses they’re trained to save

doctors nurses they’re trained to save lives

lives

lives but people 75% of people interviewed

but people 75% of people interviewed

but people 75% of people interviewed have said that they would prefer to die

have said that they would prefer to die

have said that they would prefer to die at home only 25% of people actually get

at home only 25% of people actually get

at home only 25% of people actually get to die at home so how can we change that

to die at home so how can we change that

to die at home so how can we change that because death is not part of everyday

because death is not part of everyday

because death is not part of everyday life anymore we don’t talk about it

life anymore we don’t talk about it

life anymore we don’t talk about it doctors are not trained to talk about it

doctors are not trained to talk about it

doctors are not trained to talk about it they’re trained to save lives because

they’re trained to save lives because

they’re trained to save lives because it’s removed from us it’s become a

it’s removed from us it’s become a

it’s removed from us it’s become a stigma let’s face it when you saw that

stigma let’s face it when you saw that

stigma let’s face it when you saw that there was to talk about death on the

there was to talk about death on the

there was to talk about death on the program today you probably wanted to run

program today you probably wanted to run

program today you probably wanted to run out the door and say well I guess I’ll I

out the door and say well I guess I’ll I

out the door and say well I guess I’ll I can I can skip that one we don’t talk

can I can skip that one we don’t talk

can I can skip that one we don’t talk about it because we’re afraid of it now

about it because we’re afraid of it now

about it because we’re afraid of it now song young Rumpy Shea he is a Tibetan

song young Rumpy Shea he is a Tibetan

song young Rumpy Shea he is a Tibetan monk and he wrote the book the Tibetan

monk and he wrote the book the Tibetan

monk and he wrote the book the Tibetan book of living and dying sorry he says

book of living and dying sorry he says

book of living and dying sorry he says imagine how things could be if we would

imagine how things could be if we would

imagine how things could be if we would live our lives infused with the sacred

live our lives infused with the sacred

live our lives infused with the sacred meaning if our end-of-life care were

meaning if our end-of-life care were

meaning if our end-of-life care were always lit by the sense of awe in the

always lit by the sense of awe in the

always lit by the sense of awe in the face of death so think about that if our

face of death so think about that if our

face of death so think about that if our end-of-life care were infused with a

end-of-life care were infused with a

end-of-life care were infused with a sense of awe and if we looked at life in

sense of awe and if we looked at life in

sense of awe and if we looked at life in death as an inseparable whole so the

death as an inseparable whole so the

death as an inseparable whole so the death is just really part of living it’s

death is just really part of living it’s

death is just really part of living it’s something that we all do and if we

something that we all do and if we

something that we all do and if we sought to make love and compassion

sought to make love and compassion

sought to make love and compassion really the measure of our every act what

really the measure of our every act what

really the measure of our every act what a revolution that would be and that we

a revolution that would be and that we

a revolution that would be and that we would all be free we would be free to

would all be free we would be free to

would all be free we would be free to discover our birthright I do believe and

discover our birthright I do believe and

discover our birthright I do believe and I my it’s my hope in my my dream is that

I my it’s my hope in my my dream is that

I my it’s my hope in my my dream is that all people have the right to die with

all people have the right to die with

all people have the right to die with dignity

dignity

dignity where they want to be with the people

where they want to be with the people

where they want to be with the people they want to be in unafraid so as a end

they want to be in unafraid so as a end

they want to be in unafraid so as a end of life doula and if you’re not familiar

of life doula and if you’re not familiar

of life doula and if you’re not familiar with that term it comes from the ancient

with that term it comes from the ancient

with that term it comes from the ancient Greek it’s been around a long long time

Greek it’s been around a long long time

Greek it’s been around a long long time it means a woman who helps another woman

it means a woman who helps another woman

it means a woman who helps another woman through childbirth and delivery and

through childbirth and delivery and

through childbirth and delivery and provides care for the family the mother

provides care for the family the mother

provides care for the family the mother and the infant after birth it’s

and the infant after birth it’s

and the infant after birth it’s interesting that we’re now using this

interesting that we’re now using this

interesting that we’re now using this same term that we used to have

same term that we used to have

same term that we used to have ah sure in life we’re using it at the

ah sure in life we’re using it at the

ah sure in life we’re using it at the end of life as well a end of life doula

end of life as well a end of life doula

end of life as well a end of life doula is someone who helps bring somebody and

is someone who helps bring somebody and

is someone who helps bring somebody and helps comfort somebody and provide care

helps comfort somebody and provide care

helps comfort somebody and provide care at the end of their life the Dalai Lama

at the end of their life the Dalai Lama

at the end of their life the Dalai Lama says that as a newborn baby we’re all

says that as a newborn baby we’re all

says that as a newborn baby we’re all helpless and without the care that we

helpless and without the care that we

helpless and without the care that we receive we wouldn’t have survived so

receive we wouldn’t have survived so

receive we wouldn’t have survived so likewise people at the end of their

likewise people at the end of their

likewise people at the end of their lives we become fairly helpless and need

lives we become fairly helpless and need

lives we become fairly helpless and need care and he says that this is one of the

care and he says that this is one of the

care and he says that this is one of the most important things that we can do is

most important things that we can do is

most important things that we can do is to relieve people from discomfort and

to relieve people from discomfort and

to relieve people from discomfort and anxiety and to assist them and that

anxiety and to assist them and that

anxiety and to assist them and that really our prime aim in helping a dying

really our prime aim in helping a dying

really our prime aim in helping a dying person is to put them at ease I have a

person is to put them at ease I have a

person is to put them at ease I have a couple of stories about the work that

couple of stories about the work that

couple of stories about the work that I’ve been doing as a mic there’s no

I’ve been doing as a mic there’s no

I’ve been doing as a mic there’s no thank you as an end of life doula I was

thank you as an end of life doula I was

thank you as an end of life doula I was sitting with a woman once caring for her

sitting with a woman once caring for her

sitting with a woman once caring for her I’d been working with her for a body

I’d been working with her for a body

I’d been working with her for a body about a year and she was getting towards

about a year and she was getting towards

about a year and she was getting towards the end of her life and she said I feel

the end of her life and she said I feel

the end of her life and she said I feel very safe with you well I was really

very safe with you well I was really

very safe with you well I was really flattered that she told me that and I

flattered that she told me that and I

flattered that she told me that and I got to thinking about this woman she was

got to thinking about this woman she was

got to thinking about this woman she was very demanding very exacting she wanted

very demanding very exacting she wanted

very demanding very exacting she wanted things a certain way she would tell you

things a certain way she would tell you

things a certain way she would tell you over and over and over how she wanted

over and over and over how she wanted

over and over and over how she wanted that and she was a little bit grumpy

that and she was a little bit grumpy

that and she was a little bit grumpy about it she could be very critical with

about it she could be very critical with

about it she could be very critical with the people around her in her life well

the people around her in her life well

the people around her in her life well this didn’t bother me because I’m

this didn’t bother me because I’m

this didn’t bother me because I’m somebody I like things a certain way and

somebody I like things a certain way and

somebody I like things a certain way and when I get to a certain point in my life

when I get to a certain point in my life

when I get to a certain point in my life when I can’t do those things it might

when I can’t do those things it might

when I can’t do those things it might not be that happy about it so I get it

not be that happy about it so I get it

not be that happy about it so I get it and she got that I got it and she felt

and she got that I got it and she felt

and she got that I got it and she felt safe with me but I think also because

safe with me but I think also because

safe with me but I think also because she was nearing the end of her life and

she was nearing the end of her life and

she was nearing the end of her life and she was becoming weaker she knew she

she was becoming weaker she knew she

she was becoming weaker she knew she needed someone to be there for her and I

needed someone to be there for her and I

needed someone to be there for her and I realized that this was a very very

realized that this was a very very

realized that this was a very very independent woman she had raised the

independent woman she had raised the

independent woman she had raised the daughter on her own she had been a

daughter on her own she had been a

daughter on her own she had been a career woman and she didn’t feel

career woman and she didn’t feel

career woman and she didn’t feel supported she just didn’t feel like

supported she just didn’t feel like

supported she just didn’t feel like there was someone there who could really

there was someone there who could really

there was someone there who could really take care of her

take care of her

take care of her and she asked me to be around her more

and she asked me to be around her more

and she asked me to be around her more as she felt herself getting weaker and

as she felt herself getting weaker and

as she felt herself getting weaker and she was going to need more care which

she was going to need more care which

she was going to need more care which was really terrifying to somebody who’s

was really terrifying to somebody who’s

was really terrifying to somebody who’s always taking care of themselves so

always taking care of themselves so

always taking care of themselves so that’s one

that’s one

that’s one area that I feel I can be of help I can

area that I feel I can be of help I can

area that I feel I can be of help I can provide comfort to somebody who’s

provide comfort to somebody who’s

provide comfort to somebody who’s nearing the end of their life and help

nearing the end of their life and help

nearing the end of their life and help that person guide that person just like

that person guide that person just like

that person guide that person just like a midwife guides a woman through the

a midwife guides a woman through the

a midwife guides a woman through the birth process I can help guide somebody

birth process I can help guide somebody

birth process I can help guide somebody and help somebody

and help somebody

and help somebody the unafraid at the end of their life

the unafraid at the end of their life

the unafraid at the end of their life I’ve had some amazing experiences in

I’ve had some amazing experiences in

I’ve had some amazing experiences in this work I’m sorry I wanted to tell you

this work I’m sorry I wanted to tell you

this work I’m sorry I wanted to tell you about what it has been like for us now

about what it has been like for us now

about what it has been like for us now where people die a way out of view in

where people die a way out of view in

where people die a way out of view in hospitals or maybe even hooked up to

hospitals or maybe even hooked up to

hospitals or maybe even hooked up to machines having medical procedures but I

machines having medical procedures but I

machines having medical procedures but I want you to imagine what it would be

want you to imagine what it would be

want you to imagine what it would be like if we had this scenario a woman I

like if we had this scenario a woman I

like if we had this scenario a woman I knew was at the end of a terminal

knew was at the end of a terminal

knew was at the end of a terminal disease she decided on her own with the

disease she decided on her own with the

disease she decided on her own with the help of her healthcare practitioners

help of her healthcare practitioners

help of her healthcare practitioners that she was going to have no more

that she was going to have no more

that she was going to have no more treatment and just go home and die in

treatment and just go home and die in

treatment and just go home and die in the presence of her loved ones and the

the presence of her loved ones and the

the presence of her loved ones and the home she loved with her pets that she

home she loved with her pets that she

home she loved with her pets that she loved and she moved into the little

loved and she moved into the little

loved and she moved into the little house that she had built in her backyard

house that she had built in her backyard

house that she had built in her backyard it was surrounded by woods there was a

it was surrounded by woods there was a

it was surrounded by woods there was a little stream in the back it was really

little stream in the back it was really

little stream in the back it was really kind of perfect she had a art studio and

kind of perfect she had a art studio and

kind of perfect she had a art studio and a kitchenette she had everything she

a kitchenette she had everything she

a kitchenette she had everything she needed right there she was also a very

needed right there she was also a very

needed right there she was also a very independent woman and had always done

independent woman and had always done

independent woman and had always done things on her own and never needed help

things on her own and never needed help

things on her own and never needed help when she got towards the end of her life

when she got towards the end of her life

when she got towards the end of her life her family became aware that she was

her family became aware that she was

her family became aware that she was going to need help and they didn’t want

going to need help and they didn’t want

going to need help and they didn’t want to be care providers they wanted to be

to be care providers they wanted to be

to be care providers they wanted to be able to be the emotional support after

able to be the emotional support after

able to be the emotional support after all they were going through their own

all they were going through their own

all they were going through their own grief in their own loss they were

grief in their own loss they were

grief in their own loss they were experiencing that they were gonna lose

experiencing that they were gonna lose

experiencing that they were gonna lose this very beloved woman so that’s where

this very beloved woman so that’s where

this very beloved woman so that’s where I came in now she had friends come and

I came in now she had friends come and

I came in now she had friends come and visit but when she was tired they would

visit but when she was tired they would

visit but when she was tired they would go to the main house she had her little

go to the main house she had her little

go to the main house she had her little little cute little house in the back we

little cute little house in the back we

little cute little house in the back we had birds singing we had people would

had birds singing we had people would

had birds singing we had people would come and play music out the

come and play music out the

come and play music out the a window there’s a little little pond

a window there’s a little little pond

a window there’s a little little pond and a fountain it was just it was really

and a fountain it was just it was really

and a fountain it was just it was really beautiful

beautiful

beautiful and at the very end she had chosen to be

and at the very end she had chosen to be

and at the very end she had chosen to be with her sister and she took her last

with her sister and she took her last

with her sister and she took her last breath peaceful she had resolved all the

breath peaceful she had resolved all the

breath peaceful she had resolved all the things that she had had to think about

things that she had had to think about

things that she had had to think about her family knew and her wishes were

her family knew and her wishes were

her family knew and her wishes were there were no issues that came up

there were no issues that came up

there were no issues that came up oftentimes there’s a movement right now

oftentimes there’s a movement right now

oftentimes there’s a movement right now a movement that’s changing the way

a movement that’s changing the way

a movement that’s changing the way people have experienced death it’s

people have experienced death it’s

people have experienced death it’s called death over dinner and I encourage

called death over dinner and I encourage

called death over dinner and I encourage you to just look it up it’s there’s TED

you to just look it up it’s there’s TED

you to just look it up it’s there’s TED talks and there’s a website it helps

talks and there’s a website it helps

talks and there’s a website it helps people talk about death we don’t talk

people talk about death we don’t talk

people talk about death we don’t talk about it because it’s become so

about it because it’s become so

about it because it’s become so stigmatized and removed from everyday

stigmatized and removed from everyday

stigmatized and removed from everyday life this movement helps you sit with

life this movement helps you sit with

life this movement helps you sit with your loved ones over dinner and talk

your loved ones over dinner and talk

your loved ones over dinner and talk about you know have them do you have a

about you know have them do you have a

about you know have them do you have a Medical proxy do you have somebody in

Medical proxy do you have somebody in

Medical proxy do you have somebody in your life who knows your wishes at the

your life who knows your wishes at the

your life who knows your wishes at the end of your life if you can’t make

end of your life if you can’t make

end of your life if you can’t make decisions and they’ll make them for you

decisions and they’ll make them for you

decisions and they’ll make them for you these are all really critical things

these are all really critical things

these are all really critical things having your assets and your have you

having your assets and your have you

having your assets and your have you done a will have you had these

done a will have you had these

done a will have you had these conversations with the people in your

conversations with the people in your

conversations with the people in your life about what you would like what you

life about what you would like what you

life about what you would like what you would not like in terms of medical

would not like in terms of medical

would not like in terms of medical intervention at the end so this woman

intervention at the end so this woman

intervention at the end so this woman had had all of those conversations

had had all of those conversations

had had all of those conversations already she was ready and she slipped

already she was ready and she slipped

already she was ready and she slipped away very peacefully another thing that

away very peacefully another thing that

away very peacefully another thing that happened to me that was pretty amazing

happened to me that was pretty amazing

happened to me that was pretty amazing with this same woman towards the end a

with this same woman towards the end a

with this same woman towards the end a couple of days before she finally passed

couple of days before she finally passed

couple of days before she finally passed away I was up in her room with her at

away I was up in her room with her at

away I was up in her room with her at night at this point she felt she wanted

night at this point she felt she wanted

night at this point she felt she wanted somebody close by in case she needed

somebody close by in case she needed

somebody close by in case she needed something during the night and that’s

something during the night and that’s

something during the night and that’s one of the things I can do besides

one of the things I can do besides

one of the things I can do besides providing comfort I can make sure that

providing comfort I can make sure that

providing comfort I can make sure that you’re not in pain I can make sure that

you’re not in pain I can make sure that

you’re not in pain I can make sure that your pillows are plumped if somebody

your pillows are plumped if somebody

your pillows are plumped if somebody needs to use the bathroom or needs to be

needs to use the bathroom or needs to be

needs to use the bathroom or needs to be washed I can do that so during the night

washed I can do that so during the night

washed I can do that so during the night she sat up in bed and said oh who are

she sat up in bed and said oh who are

she sat up in bed and said oh who are these people here and I she was sounded

these people here and I she was sounded

these people here and I she was sounded really delighted that she was being

really delighted that she was being

really delighted that she was being visited now I’ve heard people on the

visited now I’ve heard people on the

visited now I’ve heard people on the brink of death

brink of death

brink of death visits from people that they love people

visits from people that they love people

visits from people that they love people that have passed on before but this was

that have passed on before but this was

that have passed on before but this was a little bit different because she said

a little bit different because she said

a little bit different because she said your family’s here this is your family

your family’s here this is your family

your family’s here this is your family and they’re so happy and they’re so

and they’re so happy and they’re so

and they’re so happy and they’re so delighted and I asked her to describe

delighted and I asked her to describe

delighted and I asked her to describe who was here and it was my partner from

who was here and it was my partner from

who was here and it was my partner from who had died 21 years ago and he was

who had died 21 years ago and he was

who had died 21 years ago and he was there in the room according to her with

there in the room according to her with

there in the room according to her with my children the way they looked 21 years

my children the way they looked 21 years

my children the way they looked 21 years ago my children are adults now and she

ago my children are adults now and she

ago my children are adults now and she said he’s such a gentle man and he’s so

said he’s such a gentle man and he’s so

said he’s such a gentle man and he’s so happy and he’s so peaceful and it just

happy and he’s so peaceful and it just

happy and he’s so peaceful and it just gave me this amazing chill we both had

gave me this amazing chill we both had

gave me this amazing chill we both had tears in her eyes that she was able to

tears in her eyes that she was able to

tears in her eyes that she was able to see through this permeable door between

see through this permeable door between

see through this permeable door between the worlds it was there it gave me such

the worlds it was there it gave me such

the worlds it was there it gave me such hope because at that time I had been

hope because at that time I had been

hope because at that time I had been asking myself more and more I’ve been

asking myself more and more I’ve been

asking myself more and more I’ve been working with people who are whore dying

working with people who are whore dying

working with people who are whore dying and I wondered to myself is this the

and I wondered to myself is this the

and I wondered to myself is this the work I should be doing am I in the right

work I should be doing am I in the right

work I should be doing am I in the right place here this is not exactly what I

place here this is not exactly what I

place here this is not exactly what I thought I’d be doing at this time in my

thought I’d be doing at this time in my

thought I’d be doing at this time in my life and here was an answer to my

life and here was an answer to my

life and here was an answer to my question I’m in the right place if I’m

question I’m in the right place if I’m

question I’m in the right place if I’m able to provide comfort and care for

able to provide comfort and care for

able to provide comfort and care for someone who’s in that place accompany

someone who’s in that place accompany

someone who’s in that place accompany them to the door I cannot go through the

them to the door I cannot go through the

them to the door I cannot go through the door with them we’re all going to die

door with them we’re all going to die

door with them we’re all going to die we’re all going to be alone when we die

we’re all going to be alone when we die

we’re all going to be alone when we die but hopefully we can provide comfort and

but hopefully we can provide comfort and

but hopefully we can provide comfort and care for people who are in that place so

care for people who are in that place so

care for people who are in that place so they can be unafraid so they can be

they can be unafraid so they can be

they can be unafraid so they can be comforted so they can be at peace when

comforted so they can be at peace when

comforted so they can be at peace when they die thank you so much for being

they die thank you so much for being

they die thank you so much for being here today I hope I’ve given you

here today I hope I’ve given you

here today I hope I’ve given you something to think about

something to think about

something to think about thank you

thank you

thank you [Applause]

”

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