March 23, 2023 • 51 mins
It seems most people feel obligated to cringe or shut down when the thought of the inevitable surfaces. But the simple fact exists that we will all leave this life at some point. Ali talks with Valoria Walker and Lauren Lyster-Mensh who are trained as end-of-life doulas, people who shepherd the dying and their loved ones through the often difficult, emotional, complicated process. They serve as non-medical advocates and holistic supporters of the person passing. Valoria and Laura talk about their experiences, the death positivity movement, death cafes and how we can all start planning for and normalizing conversations about death.
If you have questions or guest suggestions, Ali would love to hear from you. Call or text her at (323) 364-6356. Or email go-ask-ali-podcast-at-gmail.com. (No dashes)
**Go Ask Ali has been nominated for a Webby Award for Best Interview/Talk Show Episode! Please vote for her and the whole team at https://bit.ly/415e8uN by April 20, 2023!
Links of Interest:
Washington Post Article with Laura and Valoria
Death Doula Days at Historic Congressional Cemetery
Doula by Destiny (Valoria Walker)
INELDA: International End-of-Life Doula Association
Death Doulas Used to Be Rare. The COVID-19 Pandemic Changed That (Time Magazine)
How the Death Positive Movement Is Coming to Life
Death Cafes Spread Rapidly Around the World (Healthnews)
10 Best Books on Death and Dying (according to UpJourney)
Credits:
Executive Producers: Sandie Bailey, Alex Alcheh, Lauren Hohman, Tyler Klang & Gabrielle Collins
Producer & Editor: Brooke Peterson-Bell
Associate Producer: Akiya McKnight
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Welcome to Go ask Alli, a production of Shonda Land
Audio and partnership with iHeartRadio. Rolling on the full. Laughing
is a thing I can. I've seen, We've all seen
people do it. I've done it, I've keep Kidding's for
me now. The work is to want what I have,
even kind of shitty stuff. You know, that's my work.
It's imperfect. So let me ask you a question about
(00:22):
actors because you are Yeah, me too. We are old
funny duddies. We go to sleep at ten, we wake
up at six, we go to bed at eight, So
there are more funny duddies than you. You are the
funny duddiest. Yes, welcome to go ask Alli. I'm Allie Wentworth.
(00:45):
You know I've spoken a lot about aging parents and
how we're dealing with our own mortality, and actually, right
now I have a father in hospice, and I'm sitting
nearby a Boston hospital where my mother is being taken
care of. She just broke a rib and her femur.
And a few weeks ago, I was reading the Washington
(01:07):
Post and I read an article about death dulas, and
I was fascinated because death dulas or end of life
dulas are people that help you. They can advocate for
you and actually make the transition a little bit smoother,
and so I was dying to talk to these death dulas.
(01:29):
Laura Lister Mensch used her downtime during the pandemic to
be trained as an end of life DULA and volunteers
her services in hospice care. She currently is the first
Death Dula in residence at Historic Congressional Cemetery in Washington,
d C, where she holds weekly Death Dula day gatherings
and the Lauria Walker. She's an end of life dula
(01:51):
and the founder of Dula by Destiny. She partners with
organizations to promote, serve, and educate communities about holistic end
of life and advance auts care planning. She's an International
End of Life Dula Association educator and has a master's
in Management of Aging Services. My father is in hospice
(02:17):
in Washington, DC right now, and I realized I didn't
even know what that meant exactly. And then I realized
that I have grown up in a world that doesn't
talk about death very often. And then I was reading
in the Washington Post and I saw two words death dula,
(02:40):
and I thought, what the hell is that. So let's
just start in the most simplistic way. What is a
death duela. I'm going to let Val take the definition,
but I do want to say that the training is
called end of life dula. So it was a little
(03:02):
bit of a stretch that we called it death dula
for this other project. But they're interchangeable. Yes, it is
a more shocking way provocative way to say it. Yeah,
end of life dula sounds a lot more calming and digestible.
So Val, tell me about an end of life dula.
(03:25):
So end of life dula is my preference, and end
of life dula starts out. Let me just say with listening,
but we come into a sacred space, a space where
a person is transitioning to serve them and their families
with assess of humility while we're supporting them to bring
(03:46):
back the humanity and the compassion that we often don't
see in the dying process. We work in a capacity
of being non medical, so we're not in there a
minister any type of medication. We are listening to build
trust in a nonjudgmental way. So if a patient or
(04:10):
a client is saying something to me that may conflict
with me. It is not my place to say, well,
let me try to save you on that, or let
me try to change you on that, or let's think
about it another way, because this dying process is not
about the duela. It's a person that's in front of us.
Caregivers are burned out, confused, under trains, so we try
(04:35):
to help them go through the process by providing a
as much support as we can. And so that's what
a duela is. We bring death awareness. We empower the
clients and the caregiver to speak up because a lot
of times, because you don't know things, or you don't
know a medical terminology, you may not feel comfortable. So
(04:57):
we bring in a conversation where both parties are on
the same page and under the same understanding, and then
we go in as a team member, most of the
time in hospice, not to go in to change the plan,
but to see what we can do to enhance the
plan for the care team and also for the person
that's transitioning and their family members. That's fantastic And Laura,
(05:22):
you during COVID decided to train to be an end
of a life dula and so what made you come
up with this decision and how was that process. I've
always been someone who felt more comfortable about death than
a lot of people around me, and I thought about
being a birth dua when at a certain stage. But
(05:44):
I really felt like I'm reaching a certain age in
early sixties where I'm seeing a lot more death and
friends and family. A lot of people I know are
losing people COVID, and I like a lot of people
decided to lean into this during COVID. It's a phenomena.
I think people are really thinking about deathcare and end
(06:05):
of life care in a way that was not perhaps
happening before. So I'm one of many. One of the
things I love about that article is that I've heard
from callous people who'd never heard of it before, and
so I feel like the service of making sure people
know this exists is part of this passion, part of
(06:26):
this project. It's interesting because people that I've seen in
hospice or in the hospital dying, they don't have an advocate.
Usually is particularly in a hospital, it's usually a family
member saying, you know, excuse me, my husband's uncomfortable, or
the famous scene in terms of endearment, when the mother's screaming,
(06:48):
you know, give my daughter the shot, and so what
you said earlier valves, so you can't. You don't administer medication.
But it sounds like a important, almost imperative part of
dying is to have someone there to kind of represent
you and represent you, know, your wants and your desires.
(07:13):
One of the things that I think we all know,
especially when it comes to death and families, a lot
of family members have different ideas about how family members
should die, and it creates havoc and a family and
lots of anger. And so have you found that you
(07:33):
have to kind of be an intermediary within families too? Absolutely?
I can give you a situation where there was a
family member that I supported in the first meeting. She said, VOW,
I want you here, but my family is not going
to accept the way that I want to die, and
(07:56):
I need to make sure that you are sure with
support parding me. And I said I am, and sure enough,
I set up a virtual meeting with the family member,
and the sister came on and she was saying, you
can't die like this and we need you to keep
on fighting. And I talked to the caregiver that was there.
(08:16):
Of course, the person that was transitioning. And I looked
at him and I said, now is the time that
we have to intervene. And he agreed with me, and
he was the one who told the sister, this is
what she has accepted. This is the way that we're
gonna let this process flow. You can come on board
with us, but we can't let you interrupt this sacred
(08:39):
space that we're holding for her to honor her the
way that she wants to be honored. So you can
get with the program, or you cannot get with the program.
And she flew in the very next day, and she
was okay for a while, and then she flew back
and she started the family dynamics all over again. But
(09:00):
the family member was already deceased by then, right, No,
she was still she was still alive. But we still
did not allow her to interrupt the space that we
was holding for her who was transitioning. M Laura, what
have some of your experience has been? So my work
is is is a little different because I volunteer at
(09:21):
a hospice board in a hospital. Um, I'm there for
anyone who's there. They don't know my name, I don't
know theirs, And I especially focus on people who have
no friends or family and are in their last hours
weeks of life. So it's it's a little different, but
my training as an end of life to a law
(09:44):
really helps me do that work more mindfully and thoughtfully.
What I find is that there's there's a real fear
of all just family and friends, about death, and that
that fear brings out the worst in all of us.
And the antidote to that would be another part of
(10:06):
what DOUST do, which has helped people who are dying,
or maybe way before you're dying, that would be preferable
to kind of write down and share what your desires
would be that are according to your values and your wishes,
so that when someone like VOW or me or someone
else comes along and plays that role as that non
(10:28):
medical supporter, that we know what that person's values were
and what they wanted, because as you're experiencing, sometimes the
person who's actually dying isn't really fully oriented to the
situation and they need an advocate family to kind of
get on board. And I was going to ask you, guys,
(10:53):
what do you do when somebody has had such cognitive decline.
You know that they're nonverbal and they're not really there.
They've already written down their wants. And so if somebody
had written down, let's say six months earlier, you know
I love birds. Then when they sort of lose, for
(11:15):
lack of a better phrase, lose their mind, you still
know to talk about birds or to play bird music,
like you implement what they wanted. Whether they're lucid or
not correct, they aren't as if they're sitting there speaking
with us like you and I speak it today. If
they're in hospice or if they're at home, I would
(11:37):
be looking for a way to bring in a bird
in a cage so that that bird can sing in
the morning time, or so that it can be And see,
this is what a duela does. We think outside of
the box. I've had a person who I've actually taken
her outside of acts or I said, do you want
to go outside? She said sure. It was in July.
It was hot, we're in Maryland, the humidity was up.
(12:00):
After five minutes of moving her entire bed out, she said,
I want to go back inside. Okay, our poorness just
had a high slash. But took her back inside alley.
She she died the next day. She transitioned the very
next day, but she had a moment of being outside
(12:23):
for five minutes, and that's what stirs up our heart
and our spirit as end of life duelas walk me through. Um,
there's nothing typical about it, but walk me through sort
of one of your experiences as an end of life Duela. So, Laura,
I mean, how does that work in hospice. I think
(12:45):
it's different in different systems of hospice and different situations.
I'm on a hospital ward and I'm not at liberty
to give their exact protocol, but I will say that
because I'm able to be with people who who are
not surrounded by friends and family and are often very
close to the end of their life, my work mainly
(13:07):
has to do withholding hands. So I just sit and
I hold people's hands and I breathe with them for
as long as I'm there. And that, you know, being
able to be present for somebody who's alone is a
really meaningful thing. I wish more people did it. In DC,
we have a lot of people who end their lives
(13:30):
alone and without any resources or personal effects or not
to mention Adula. So I think we as a society
should be doing better and this should not be something.
But those of us who want to volunteer to do that,
get our training and go do it. And it's very
(13:51):
I think meaningful work and valve. For somebody that, let's say,
wants to age at home and ask you to come
to their like some of your clients ask you to
be with them, how does that process work? So it
really depends on where they are in their journey. If
(14:11):
we are six months out, then of course I'm supporting
them before the transition. So I'm talking about different developments
like VCA, a volunteery, stopping eating and drinking, because I
want to determine how what's their mindset for when they transition.
I'm listening actively. They may want a vigil during that
(14:34):
last breath. They may want to work on a legacy,
so I will talk to them about a legacy projects.
I had an individual lady. This is the forty eight
year old lady who wanted a body donation, but she
wanted her body to be returned back to her family
and the institution that she had filled out the paperwork with.
(14:57):
She was unaware that they cremated and they returned the
remains to the family member. So I had to go
in and find another organization, which I did luckily, that
would do the research on her body and return the
whole body back to the family. And then at that
(15:18):
point she wanted a green burial, so she had a
lot of dynamics as a part of what she was
thinking about. But I had some time to sit with
her and talk that through. So after that process, then
the doing part is educating the family member on the
signs and symptoms. Was changing the breathing, that's changing, the
(15:42):
discoloration of the skin that may be changing. We also
address because we are very much focused on food and eating.
That's how we gather and that's how we comfort ourselves.
So I educate family members on the body is shutting down.
You don't have to bring in a three course meal,
(16:04):
especially if they are refusing food. You don't want to
force that because I understand that that makes you feel better.
You know, when we get sick, mom says, get some
chicken noodle soup because that makes mom feel better and
it also makes the child feel better. But in this case,
we talk about force feeding, so it's education, education, education.
(16:26):
Then we're bringing in what we talked about in the
befour months, the playlists, you know, we're holding space and
we're dealing with family dynamics if that's the case, and
then afterwards we are helping with reprocessing the whole event
(16:47):
that took place, just to see and check where the
caregivers are emotionally. If we see that they are just stuck,
grief stricken, can't move, then we do referrals to license
clinical social workers or grief therapy. We also enact the
after death care if they want the hands washed or
(17:10):
defeat washed or anything like that. And all of that
goes right back to the beginning of listening actively and
having a conversation of what the individual wants, brother it's
at home or any hospice facility. If I had a
terminal disease and I hired one of you to be
(17:32):
my duela, and I said to you, will you help
me take my own life? Could you slash? Would you
I consider being an end of life to it to
be a non medical role, and so that's not my
purview at all. But if you're asking if as a
(17:56):
as an end of life dula, if I was supporting
someone in their value, I wouldn't call that ending their life.
You know, we all have different values around that, but
I think this is a conversation that people are having
about choosing when they want to do that, and there
are different ways that that happens. I think we all
(18:17):
should be talking about it, and we should be sharing it,
and people should be able to state their own wishes.
In my case, I would want to get an understanding
of what you are thinking about when you're talking about
ending your life. Are you talking about medical aid and
dying which is not legal in many states? It's only
legal and about eleven states, So if I'm in Merland,
(18:41):
I can't assist you with that, you know, anyway legal
if you are talking about yeah, legally, if you're talking
about VSA volunteeringly stopping eating and drinking, anyone can assist
you with that, And that really depends on how comfortable
the Duela feels honoring that request for you, and people
(19:03):
choose that to hasten their death. In most cases, they
will begin to stop eating, they're not taking in any fluids,
they're not taking in any substance, and you will see
that the dying process will begin fairly quickly. So that
would be my determination, finding out what is it that
(19:23):
you're really talking about? When it comes now, I would
help with VC and I will provide resources for you.
If you're talking about medical aid and dying, well, can
you talk about the different stages of death? I know
you were just touching upon it, but what are the stages?
So if you're a couple of months out, you are
(19:44):
mostly still able to communicate. And this really is not
I'm going to give you a general description, but it
depends on the disease, your age, your genetics, you know.
So in the beginning you're still a fluid, You're able
to have a conver sation, but you begin to turn inwardly.
(20:04):
There's a period of quietness, reflection. Many people will start
talking about their childhood, you know, what's meaningful to them.
We also address concerns around guilt. You know, anything that
anyone wants to confess to us. We address that, any
unfinished business, forgiveness, we talk about that. And then when
(20:29):
we start moving closer to the ending part of death,
we notice that there's a what they call a death rattle.
If you've heard of the death rattle, where the noise
is right, the gurgling and the throat, that's an indication
of getting close. You may see marbling of the skin
(20:49):
where you see where the veins are not really as
puffy as they normally would be. The skin does a
return back to its regular position. At this time most
of the time that the person is not talkative at all.
You may be able to say wake up, and they
may come up for a couple of minutes, you know,
then go back. So now you're not really able to
(21:13):
communicate with them. And then the last minutes two hours
there's basically no communication. They're sleeping with the mouth open,
You're not seeing any breathing from the chest. A lot
of times you can look at the chest and see
that there's no movement. And so these are some of
(21:34):
the signs that happen across the course, depending on where
you catch a person at in their journey. Has anybody
ever confessed things to you? They have not, but that
I have heard of other dulers saying yes, wow, yeah,
that's fascinating. Yeah, I heard some confessions from family members.
(21:55):
Oh wait a second, yeah, what do you they confess
to you? Yeah? I do find that that as as
we've all seen, right, when when you're with someone in
a moment that is really profound like that or the
moments around it. Um, I think it. People become very
(22:15):
personal and even a stranger will will speak of things
that they might not normally do. And I have found
that family members want to talk, and maybe it's better
that it's not a family member. Maybe it's better that
it's someone that they, you know, have not had a
(22:35):
long relationship with, and they want to they want to talk.
I've been very, very surprised by that and very honored. Yeah,
there's a lot more to come after the short break
(22:58):
and we're back. I wonder this is a question for
both of you, but what an extraordinary time it is
when somebody is transitioning and you're with them. I mean,
it's it's religious almost And how do you not feel
(23:21):
sad yourself after somebody has passed. How do you deal
with the connections that you make with the people that
you're helping and advocating for. Where's the self advocation and
the self love for you when you're helping so many
people do this? I would say on my end as
a newer person to this, before I was allowed to
(23:42):
volunteer at hospice, or before I was able to come
on as an annealda training as a DULA, I was
asked questions about what kind of attitude I was taking
and whether I had self care. That's a really big
part of the training. It's making sure or that people
are not making it about themselves as well said, and
(24:05):
know how to do what you just describe, which is
really hard, which is not to be about you, but
still be in the room and you know you can't
disconnect And I know I do cry and I do
after process that when I leave. For me, you know
Laura talked about we do have a self care section
(24:27):
that we talk about when we are doing the training.
But for me, like for instance, Ali, I supported someone
over a year, ninety three year old lady. It's very
hard not to connect when you're supporting someone for that
amount of time. And I also was asked to attend
(24:47):
her funeral service. Aterwards, I stayed in contact and checked
on her son, who was her primary caregiver a couple
of months, three to six months afterwards, and I took
got three months. I needed to clear my own space
before I could help the next client. Also a part
of our training we talk about rituals and last breath
(25:10):
rituals for family members. So as a ritual, I have
a very strong connection to water and so I have
to get myself to a place where I see water.
Here water thus my ritual of how our process and
cleanse myself from the person or the client that I
just served. I read about a woman who wanted so
(25:35):
much to be by the beach or on the beach
when she died, and her duela got sand and put
her hand in sands and sort of scented the room
with coconut and created a world that felt like the beach,
you know, put the music on of the waves, which
was so extraordinary, you know, because it's it's simple, but
(26:00):
it's such a beautiful way to help that person die,
especially if they're in a very antiseptic room, to have
that imagination. I know when my stepfather was dying, he
turned to my mother. He died during COVID, he was
ninety nine, and he said, I'm so tired. Can I go?
(26:22):
And my mother said, oh, yes, you can go, And
she talked about him being in a canoe and they
were going down the river and she sort of created,
like Adula, a wonderful picture and he just kind of
fell asleep, which to me was the most beautiful way
one can possibly die. But I believe that that Duela's
(26:45):
can kind of create those wishes and those atmospheres that
people dream about or want when they are passing. You know,
I've never been in a hospital where somebody said, oh here,
let me turn on some classical music, and you know
it just that kind of care is not there exactly,
(27:05):
It's true, and you know, the alternative to that kind
of experience is often the shopping channel. I'm surprised and
how many times I see that people are watching something
that really shouldn't be end of life TV fare and
I wonder if the person in the hospital, you know,
(27:26):
if that's what they wanted or not. But I don't
like to think of people exiting this world to the
shopping channel. Oh no, just my Peppie, please don't not
with QBC Wow, we also use a tool called guided imagery.
So in that case, you know, we would ask you
(27:46):
what is your favorite place, and we would incorporate all
the sounds and smells and everything that we can make
that scessery happen and that connection happen for you. It
sounds like your mother instinctually did god imagery exactly. She did.
She didn't realize she was doing that, but she did.
It's amazing. Yeah, So Laura, you're the resident Death Duela
(28:10):
at Historical Congressional Cemetery, right, yes, which makes me really
pretty pretty nutty. And tell me about those We created
this as an idea. It's not been done. There are
artists in residents at some cemeteries. Congressionals are really special place.
They're allowing a space now for death positive activities, and
(28:31):
so we're just creating it as we go every Saturday,
having people come and just talk about these things and
do activities. I'm really into active what do they mean?
And certainly I'd love one of you to talk about
the death positivity movement. What is a good death? I
hear that phrase over and over again, a good death.
(28:52):
I'll jump in and give you my definition of death positive.
And I have to say that my mother is death negative.
So I often have conversations with my mom about death
positive and death negative. But I used to be involved
with talking about sex and the term sex positive came up,
(29:16):
and I remember thinking, well, that's weird, like what does
that mean? What it means is that you accept that
this is part of the normal experience. Death is part
of the normal experience, and that death is neither good
nor bad, and that the idea that a good death
to me would be one where you I think most
(29:36):
people would say, has dignity, peaceful. It's a peaceful situation,
It is without undue pain and where someone feels that
they are loved. And that is part of what we're doing,
is as end of life dulas is, we're providing an
environment of love for fellow human being, whether there's family
(29:58):
there or not. And that, to me is what we're
describing when we talk about a good death and death positive.
What does your mother mean when she says death negative?
I think she feels that death is somewhere someone has
made a mistake and she says it's fine afterwards, you
(30:19):
can be positive about it. But I can't feel positive
about this. And my mother is a black woman who
has fought all her life to live and has has
faced enormous challenges and had to scrap and fight for
herself in a world that wasn't wasn't really supporting her.
So I totally understand her failing and I understand her
(30:41):
distrust of medical um you know, expertise. Does your mother
want to have a duela with her that would require
a conversation about about this, and I you know, I
think a lot of us live in families where that's
that's a difficult conversation to have. I'm willing to talk
to my mom about it. Hey Mom, Yeah, but I
(31:03):
think that we start the conversation. That's what we're trying
to do with this project that you read about, is
start the conversations. Yeah, I have aging parents now. Like
I said, my father's in hospice and I can't help
but think about my own mortality. It keeps me up
sometimes at night and I think about death and I
think about my children. And it was always, like I
(31:27):
said at the beginning of the podcast, it was we
never spoke about it in my family ever. And I
have a series of grandparents that took their own lives
and that was never spoken of. And so for me
right now, at this moment in my life, I'm actually
fascinated by all of this information because I think there
(31:50):
is a way to have some kind of control over
how you leave. And there's so much of it, like
you said, Laura, is discussion. You know, at some point
I'm going to talk to my children about it. I
want to talk to my husband about it. What are
we thinking, how do we want to do this. Where
do I want to be? What do I want to be?
(32:10):
And I think most people ignore the subject until either
it's too late or they sort of, you know, look
to the medical community and so like you deal with this,
we can't deal with it. So true, I agree with that.
I think we often seek hospice care too late, you know,
(32:32):
and we often have the conversation too late. And I
think on one of your previous podcasts you had a
guest that was talking about near death experience. Right, thank
you for listening. Val sure like and subscribe. But you know,
we we we can be at a restaurant and choke
(32:54):
and die. We you know, we don't have to be
eighty and ninety. You look at the young of those
that are dying on the streets, you know. And I
went back to my university to train or to talk
about advanced care planning and dying, and I was absolutely
amazed at the students in the age range of twenty
two to twenty eight that were willing to listen and
(33:17):
had comments afterwards. And so I just connected with a
business here in Columbia, Maryland. She put out a death cafe,
which I did two weeks ago. We hadn't had one
in Columbia, Maryland since twenty thirteen. We had a waiting list,
we had to refuse people. So individuals COVID unfortunately helped
(33:39):
us bring out death, you know, and so the fear
is still there. But to have someone be able to
hold a space without judgment while you are considering your
mortality is a good thing that's happening in our society. Now,
now for my listeners, can you explain a death cafe?
(34:00):
Because I don't want a reservation? What am I going
to order at the death cafe? A conversation, Laura, So
tell me about it. I've been too many death cafes,
but I facilitated one for the first time yesterday. And
just like Val said, there's a real interest among young people.
(34:23):
This was not just a bunch of eighty year olds.
It wasn't even you know, us sixty some year olds.
There were There was quite a mix of people. But
one phenomena that I've found in Val and I've talked
about this is it's almost all women. It's like the
Union of Men decided that we will send one to
each of your events. But that's it, just one. And
(34:46):
I don't understand it. Why are women so interested in
going to death cafes and coming to death positive events
and becoming duelists. I just think the connection to our emotions.
You know, big boys don't cry and wipe your tears,
and you're the man of the house, you know, So
(35:06):
they don't have opportunities to grieve openly. And a grieving
man has a reputation of and I'm not speaking about
all men, but has a reputation of being a weak man,
and so they are not get ready to come into
a space to talk about death, to show their emotions.
(35:27):
So a lot of that conversation with men go unspoken.
For instance, you know, I have brought my family along
because I've constantly normalized the conversation. When I first started
talking to my son about it, he would sneak out
of the room in the middle of the conversation. I'm like,
where is the boy? Where's the child? You know? And
(35:47):
then the December before COVID, my son came to my
home and said, MA, this is what I want you
to do if I die. And it was completely completely
honest to God, differently than what I would have done.
And so when we don't have these conversations Ali, we
don't honor the very people that are in our homes,
(36:10):
the people that we sleep beside, the people that we love.
You know, we assume this is what they want, but
because we don't have enough carriage and our throats to say,
let's sit down and talk about it. But look after
you normalize it. It took eight years for me to
normalize the conversation with him. But guess what, I now
know how to serve my son and I feel at
(36:33):
peace with being able to do that. And he's only
thirty years old. So you have to get past the
fear of thinking that just because you talk about death,
you're going to die, you know, to have a better death,
have the conversation about it. And so when you go
to the death cafes, basically there are forums in which
(36:54):
you discuss preparing for death, how you would like to
transition in figuring that out. Is that correct? There's no
real agenda, We just let discussions flow organically. Yeah. I
think that death cafees, which were they were a UK
phenomena originally, they are one of the many ways that
(37:17):
people are starting to have these conversations, and I find
it a very profound one for the reason Bell just said,
which is there is no agenda, there's there isn't actually
any advice given or tools. It is a bunch of
unique strangers come into a room and it's a space
in which you have to discuss dying and death and
(37:38):
you you listen to each other, you talk, and everything
that happens is because of the people in that room
that day, which is a kind of a unique experience.
And I just it's funny. I just had one of
the young ladies in her early thirties maybe latter twenties,
she attended the death cafe that I had. I just
(38:00):
got an email from her yesterday saying that I set
with my father who transitioned. I use some of the
topics that we talked about in the deaf cafe, and
I thank you so much for holding that space for
us to learn. Wow, and we'll be right back. Welcome
(38:28):
back to go. Ask Gali, so, how do how do
I approach this conversation and how do other people talk
to their loved ones. I have two answers to that question,
really briefly. One is start with humor. I think that's
very important. I also think to look at it as
(38:50):
kindness rather than as some sort of burden or something creepy.
It is a kindness to let your wishes be known
and toss your values to your loved ones. And it
doesn't have to be you know, at the end of life.
So it's kindness and humor that I can do. I
(39:11):
suggest to start from a place of yourself. So when
you're sitting down at the table with your loved ones,
you're saying, this is what I would like for you
to do for me. I have been considering more my
mortality lately. This is how I want you to honor me.
I want to be at the beach. I would like
(39:33):
to have a certain type of music played. So now
it's I I I. Because you're if you're sitting down
saying tell me what you want to tell me what
you want, that's abrupt. You know I'm not ready. You
may be considering your mortality, but what makes you think
I'm considering minds? And so it's more of I I.
And that's how I got my son to the place,
(39:54):
because I normalized the conversation with I eye so much
he was comfable enough to say, Okay, well let me
now tell a mom what it is that I want
her to do for me, and so start with the
eye and then be open to whatever it is. Rather
thy are willing to accept what you're saying or not,
(40:15):
you know, share it. Come back a couple of days,
a couple of months later, go back with the I
have been considering my mortality and this is what I
want you to do for me to honor my life
as I transition. That's great. You know, I've done a
podcast with people about money. You know, people are very
(40:35):
reluctant to talk about money, and one of the things
we discussed was putting together a book for your children
that just tells you where money is. And I'm wondering
if there's a way for people to have conversations and
even create a book that's sort of your my transitioning
(40:56):
to afterlife book, you know, if later on you're not
lucid enough to maybe verbalize it that says this is
how I would like to leave. It's interesting, Ali, because
there are quite a few tools like that, but people
don't know they exist. They don't have anyone to help
them work on it. And I think if people knew
(41:20):
that they were out there and that was like your
Thanksgiving activity, some of the family members will leave the room.
But it's a really wonderful experience to do it. I have,
for example, what we call a death binder, and there
are a lot of death binders out there that you
can create. You can create one that's already got all
the tabs on it, and there are books and workbooks
(41:42):
and end of life duelists also do this work. We
help people find the tool that suits them and they
help them get to work on it. And that's really
my mission. I want to get people to start working
on that and then edit it throughout their lives. That
would be perfect. Do you encourage people to write their
own obituary? I do, and we had a workshop on
(42:06):
that at Congressional Cemetery a couple of weeks ago, and
fascinating to me, it was young people mostly. It was
a big group and the question that got people got
stuck on surprised me. I don't know if either of
you would agree, but it was the part on the
form where I asked them to fill out who they
(42:27):
were leaving behind, and people got stuck and really felt
a lot of emotion. Wow, that's something to think about, right.
And here's the best review I could find of the
people who participated in that. Last month, a young person
wrote back to me later and said, I did not
(42:48):
like my obituary as written, and so I'm making changes
in my life so that my obituary will be different.
Oh that's amazing, that's great. Yes, that's great. I can
think of no better outcome. Yeah, that's why we're doing
this projects. It's not just about dying, it's about how
we live. I love that. Yeah. I think people have
(43:09):
dreams a lot. You hear people say, oh, I had
this dream, or sometimes I have this idea about going
to my own funeral and you know, who's going to
be there, who's going to show up, what does it
look like? And I think it might be an interesting
exercise for people to kind of have a creative writing
assignment where they got to be kind of a ghost
(43:31):
at their own funeral. What would they want it to
look like? Right, who would they want to be there,
what are the flowers like? What? You know? Just that
would be kind of a wonderful exercise. We actually do
that as part of the training. You do yes, yeah, oh,
well look at me. You're halfway there exactly. You know
(43:54):
my last question because you have been so incredibly insightful
and helpful. What are you seeing when people are preparing
for their own death? Now, besides the people that come
to the Deaf Cafe, are you seeing that the majority
(44:15):
of people are not dealing with it, They're not confronting it,
and they're not talking about it or I mean, Laura
earlier you said you sort of see a shift where people,
particularly young people, are starting to discuss it a lot more.
I definitely admire the fact that there are younger people
that are willing to have that conversation. I'm really worried
(44:35):
about people who don't because it causes chaos and fear.
But I think the answer is people generally do not
make plans and have not figured out what their values are,
and are not living as if they're mortal. I always
forget that word we are mortals. Yeah, you know, even
in hospice, a lot of people don't have a plan.
(44:56):
I've walked into people who just lost a loved one
and had no plan for where even the body of
the person was going to go or what that person
wanted as far as disposition or memorialization. So I think
we're in denial as a culture, and I think we
(45:17):
live better if we get out of that denial. So
maybe the young people will lead us on this. Yeah,
I hope. So the young people have a lot of
work to do in our country. Sorry kids, yeah, sorry kids.
But I say to my daughter's every day like it's
up to you fix the climate, fix all of it.
(45:38):
So I've asked you many questions about death and transitioning
and being a duela. So now I'm going to turn
the tables and allow both of you to ask me
a question. And I'm going to start with valve. You
can ask me anything you want. Wow. Well, I'm going
to ask you a serious question, but I really want
(45:59):
to ask you a funny question. I have squirrels that
are eating up my lights. I really want to know
how to give rid of squirrels. They're disrespectful. But let
me just go to the real question. You need to
borrow my hound dog. My hound dog will hunt a squirrel.
I'm telling you he pulls me on the leash because
he chases squirrels all the time. I'm gonna I'm gonna
FedEx him to you for a week. Yeah. Yeah, But
(46:23):
but well, now that you know the row of the duela,
and if Laura and I were your duela. What would
be one element or what would be something that you
would like for us to do to help you transition peacefully. Well,
(46:45):
one thing is I do like touch, so I would
definitely want Laura holding one hand and Value holding another hand.
I would like music, a nice classical box, masks and
be minor. I would like in This is where I'm
really going to challenge you. I would like to have
(47:07):
my bed covered in dogs when I die. I love dogs,
My dogs sleep on my bed. I just you'd have
to go to the pound. I don't know the neighborhood.
You'd have to just rally up a whole bunch of
dogs and put them on the bed. And I think
that would that would be And this is just you know,
(47:29):
I'm just starting this process, and believe me, when I
start writing in my journal, I will add things. There'll
be mint, chocolate chip ice cream somewhere in there. But
to me, that would be a nice, peaceful thing. To
have the touch of two women maternal and to have
all these dogs on my bed, That to me is heaven.
(47:50):
There would not be any shopping network. Thank you for sharing,
And Laura, can I answer anything for you? I'm envisioning
you surrounded by dog. It's beautiful. So mine is a
little serious. Okay. You mentioned your father, and that's he's
(48:12):
working his way through the process. And I know that
you mentioned that he had dementia as my dad, one
of my dads did. And I remember the minute that
I was I decided, I'm going to remember you this way, Daddy,
and I held his hands and I said, I'm going
to remember you like this. He was teaching me how
to grow. What is the moment that you think of
(48:34):
when you when your dad was your dad, the way
you remembered him, and that you're going to hold. Oh,
what a lovely question. I think the image that I
hold is my father. He was a reporter for the
Washington Post, and later in life he discovered painting and
(48:54):
he loved to paint, and he could sit on a
grassy knoll for hours and meticulously paint a watercolor. And
I think that's when he was most at peace, when
he was happiest. So those are the moments I hold
close and remember and like to remember about him. Is
(49:16):
when he would be, you know, in his tattered corduroys
and an old sweater, sitting there painting away. Because that
was sort of him in his essence, that's beautiful. Thank
you for doing this, Thank you for enlightening everybody. It's
a incredible subject and it's like you said, I think
(49:37):
it's something we should all be talking about all the time.
And when I put down that roast chicken tonight, George
Stephanopolis is going to get an earful because we're going
to start talking about this. I'm gonna say to him,
if you don't tell me what you want to do,
that I'm going to have my own plans for you
and you're not gonna like it. Thank you, guys, thank
you very much for this. We appreciate it. You know,
(50:01):
I'm sitting in a hotel room and it's snowing outside
in Boston, and as I said at the beginning of
this podcast, I'm very immersed in this. And after I
sign off, I'm going back to the hospital to see
my mother. And one of the things I've really realized,
and you don't really realize until you're in that situation.
They and when I say they, I mean my parents
(50:23):
and people in the geriatric community. They need that hand holding.
They need to know that they're supported and loved. And
particularly when I was talking to Laura. You know, the
idea that she's in these hospitals where people have nobody
else around them and she holds their hand is so
(50:44):
huge because at the end, if you're transitioning, the idea
that the touch of human being is right there is
so imperative. So thank you both Beloria and Laura for
telling us their stories, providing such an important service. And
for more info on what you've heard in this episode,
(51:06):
check out our show notes. Be sure to subscribe, rate
and review Go ask Alli, and follow me on social
media on Instagram at the real Alli Wentworth. Now. If
you'd like to ask me a question or suggest a
guest or a topic to dig into, I would love
to hear from you, and there's a bunch of ways
you can do it. You can call or text me
at three two three three six four sixty three five six,
(51:27):
or you can email a voice memo right from your
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And if you leave a question, you just might hear
it on Go ask Alli. Go ask Alli is a
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(51:51):
podcasts from Shondaland Audio, visit the iHeartRadio, app, Apple podcasts,
or wherever you listen to your favorite shows.
Welcome to Go ask Alli, a production of Shonda Land
Audio and partnership with iHeartRadio. Rolling on the full. Laughing
is a thing I can. I've seen, We've all seen
people do it. I've done it, I've keep Kidding's for
me now. The work is to want what I have,
even kind of shitty stuff. You know, that's my work.
It's imperfect. So let me ask you a question about
(00:22):
actors because you are Yeah, me too. We are old
funny duddies. We go to sleep at ten, we wake
up at six, we go to bed at eight, So
there are more funny duddies than you. You are the
funny duddiest. Yes, welcome to go ask Alli. I'm Allie Wentworth.
(00:45):
You know I've spoken a lot about aging parents and
how we're dealing with our own mortality, and actually, right
now I have a father in hospice, and I'm sitting
nearby a Boston hospital where my mother is being taken
care of. She just broke a rib and her femur.
And a few weeks ago, I was reading the Washington
(01:07):
Post and I read an article about death dulas, and
I was fascinated because death dulas or end of life
dulas are people that help you. They can advocate for
you and actually make the transition a little bit smoother,
and so I was dying to talk to these death dulas.
(01:29):
Laura Lister Mensch used her downtime during the pandemic to
be trained as an end of life DULA and volunteers
her services in hospice care. She currently is the first
Death Dula in residence at Historic Congressional Cemetery in Washington,
d C, where she holds weekly Death Dula day gatherings
and the Lauria Walker. She's an end of life dula
(01:51):
and the founder of Dula by Destiny. She partners with
organizations to promote, serve, and educate communities about holistic end
of life and advance auts care planning. She's an International
End of Life Dula Association educator and has a master's
in Management of Aging Services. My father is in hospice
(02:17):
in Washington, DC right now, and I realized I didn't
even know what that meant exactly. And then I realized
that I have grown up in a world that doesn't
talk about death very often. And then I was reading
in the Washington Post and I saw two words death dula,
(02:40):
and I thought, what the hell is that. So let's
just start in the most simplistic way. What is a
death duela. I'm going to let Val take the definition,
but I do want to say that the training is
called end of life dula. So it was a little
(03:02):
bit of a stretch that we called it death dula
for this other project. But they're interchangeable. Yes, it is
a more shocking way provocative way to say it. Yeah,
end of life dula sounds a lot more calming and digestible.
So Val, tell me about an end of life dula.
(03:25):
So end of life dula is my preference, and end
of life dula starts out. Let me just say with listening,
but we come into a sacred space, a space where
a person is transitioning to serve them and their families
with assess of humility while we're supporting them to bring
(03:46):
back the humanity and the compassion that we often don't
see in the dying process. We work in a capacity
of being non medical, so we're not in there a
minister any type of medication. We are listening to build
trust in a nonjudgmental way. So if a patient or
(04:10):
a client is saying something to me that may conflict
with me. It is not my place to say, well,
let me try to save you on that, or let
me try to change you on that, or let's think
about it another way, because this dying process is not
about the duela. It's a person that's in front of us.
Caregivers are burned out, confused, under trains, so we try
(04:35):
to help them go through the process by providing a
as much support as we can. And so that's what
a duela is. We bring death awareness. We empower the
clients and the caregiver to speak up because a lot
of times, because you don't know things, or you don't
know a medical terminology, you may not feel comfortable. So
(04:57):
we bring in a conversation where both parties are on
the same page and under the same understanding, and then
we go in as a team member, most of the
time in hospice, not to go in to change the plan,
but to see what we can do to enhance the
plan for the care team and also for the person
that's transitioning and their family members. That's fantastic And Laura,
(05:22):
you during COVID decided to train to be an end
of a life dula and so what made you come
up with this decision and how was that process. I've
always been someone who felt more comfortable about death than
a lot of people around me, and I thought about
being a birth dua when at a certain stage. But
(05:44):
I really felt like I'm reaching a certain age in
early sixties where I'm seeing a lot more death and
friends and family. A lot of people I know are
losing people COVID, and I like a lot of people
decided to lean into this during COVID. It's a phenomena.
I think people are really thinking about deathcare and end
(06:05):
of life care in a way that was not perhaps
happening before. So I'm one of many. One of the
things I love about that article is that I've heard
from callous people who'd never heard of it before, and
so I feel like the service of making sure people
know this exists is part of this passion, part of
(06:26):
this project. It's interesting because people that I've seen in
hospice or in the hospital dying, they don't have an advocate.
Usually is particularly in a hospital, it's usually a family
member saying, you know, excuse me, my husband's uncomfortable, or
the famous scene in terms of endearment, when the mother's screaming,
(06:48):
you know, give my daughter the shot, and so what
you said earlier valves, so you can't. You don't administer medication.
But it sounds like a important, almost imperative part of
dying is to have someone there to kind of represent
you and represent you, know, your wants and your desires.
(07:13):
One of the things that I think we all know,
especially when it comes to death and families, a lot
of family members have different ideas about how family members
should die, and it creates havoc and a family and
lots of anger. And so have you found that you
(07:33):
have to kind of be an intermediary within families too? Absolutely?
I can give you a situation where there was a
family member that I supported in the first meeting. She said, VOW,
I want you here, but my family is not going
to accept the way that I want to die, and
(07:56):
I need to make sure that you are sure with
support parding me. And I said I am, and sure enough,
I set up a virtual meeting with the family member,
and the sister came on and she was saying, you
can't die like this and we need you to keep
on fighting. And I talked to the caregiver that was there.
(08:16):
Of course, the person that was transitioning. And I looked
at him and I said, now is the time that
we have to intervene. And he agreed with me, and
he was the one who told the sister, this is
what she has accepted. This is the way that we're
gonna let this process flow. You can come on board
with us, but we can't let you interrupt this sacred
(08:39):
space that we're holding for her to honor her the
way that she wants to be honored. So you can
get with the program, or you cannot get with the program.
And she flew in the very next day, and she
was okay for a while, and then she flew back
and she started the family dynamics all over again. But
(09:00):
the family member was already deceased by then, right, No,
she was still she was still alive. But we still
did not allow her to interrupt the space that we
was holding for her who was transitioning. M Laura, what
have some of your experience has been? So my work
is is is a little different because I volunteer at
(09:21):
a hospice board in a hospital. Um, I'm there for
anyone who's there. They don't know my name, I don't
know theirs, And I especially focus on people who have
no friends or family and are in their last hours
weeks of life. So it's it's a little different, but
my training as an end of life to a law
(09:44):
really helps me do that work more mindfully and thoughtfully.
What I find is that there's there's a real fear
of all just family and friends, about death, and that
that fear brings out the worst in all of us.
And the antidote to that would be another part of
(10:06):
what DOUST do, which has helped people who are dying,
or maybe way before you're dying, that would be preferable
to kind of write down and share what your desires
would be that are according to your values and your wishes,
so that when someone like VOW or me or someone
else comes along and plays that role as that non
(10:28):
medical supporter, that we know what that person's values were
and what they wanted, because as you're experiencing, sometimes the
person who's actually dying isn't really fully oriented to the
situation and they need an advocate family to kind of
get on board. And I was going to ask you, guys,
(10:53):
what do you do when somebody has had such cognitive decline.
You know that they're nonverbal and they're not really there.
They've already written down their wants. And so if somebody
had written down, let's say six months earlier, you know
I love birds. Then when they sort of lose, for
(11:15):
lack of a better phrase, lose their mind, you still
know to talk about birds or to play bird music,
like you implement what they wanted. Whether they're lucid or
not correct, they aren't as if they're sitting there speaking
with us like you and I speak it today. If
they're in hospice or if they're at home, I would
(11:37):
be looking for a way to bring in a bird
in a cage so that that bird can sing in
the morning time, or so that it can be And see,
this is what a duela does. We think outside of
the box. I've had a person who I've actually taken
her outside of acts or I said, do you want
to go outside? She said sure. It was in July.
It was hot, we're in Maryland, the humidity was up.
(12:00):
After five minutes of moving her entire bed out, she said,
I want to go back inside. Okay, our poorness just
had a high slash. But took her back inside alley.
She she died the next day. She transitioned the very
next day, but she had a moment of being outside
(12:23):
for five minutes, and that's what stirs up our heart
and our spirit as end of life duelas walk me through. Um,
there's nothing typical about it, but walk me through sort
of one of your experiences as an end of life Duela. So, Laura,
I mean, how does that work in hospice. I think
(12:45):
it's different in different systems of hospice and different situations.
I'm on a hospital ward and I'm not at liberty
to give their exact protocol, but I will say that
because I'm able to be with people who who are
not surrounded by friends and family and are often very
close to the end of their life, my work mainly
(13:07):
has to do withholding hands. So I just sit and
I hold people's hands and I breathe with them for
as long as I'm there. And that, you know, being
able to be present for somebody who's alone is a
really meaningful thing. I wish more people did it. In DC,
we have a lot of people who end their lives
(13:30):
alone and without any resources or personal effects or not
to mention Adula. So I think we as a society
should be doing better and this should not be something.
But those of us who want to volunteer to do that,
get our training and go do it. And it's very
(13:51):
I think meaningful work and valve. For somebody that, let's say,
wants to age at home and ask you to come
to their like some of your clients ask you to
be with them, how does that process work? So it
really depends on where they are in their journey. If
(14:11):
we are six months out, then of course I'm supporting
them before the transition. So I'm talking about different developments
like VCA, a volunteery, stopping eating and drinking, because I
want to determine how what's their mindset for when they transition.
I'm listening actively. They may want a vigil during that
(14:34):
last breath. They may want to work on a legacy,
so I will talk to them about a legacy projects.
I had an individual lady. This is the forty eight
year old lady who wanted a body donation, but she
wanted her body to be returned back to her family
and the institution that she had filled out the paperwork with.
(14:57):
She was unaware that they cremated and they returned the
remains to the family member. So I had to go
in and find another organization, which I did luckily, that
would do the research on her body and return the
whole body back to the family. And then at that
(15:18):
point she wanted a green burial, so she had a
lot of dynamics as a part of what she was
thinking about. But I had some time to sit with
her and talk that through. So after that process, then
the doing part is educating the family member on the
signs and symptoms. Was changing the breathing, that's changing, the
(15:42):
discoloration of the skin that may be changing. We also
address because we are very much focused on food and eating.
That's how we gather and that's how we comfort ourselves.
So I educate family members on the body is shutting down.
You don't have to bring in a three course meal,
(16:04):
especially if they are refusing food. You don't want to
force that because I understand that that makes you feel better.
You know, when we get sick, mom says, get some
chicken noodle soup because that makes mom feel better and
it also makes the child feel better. But in this case,
we talk about force feeding, so it's education, education, education.
(16:26):
Then we're bringing in what we talked about in the
befour months, the playlists, you know, we're holding space and
we're dealing with family dynamics if that's the case, and
then afterwards we are helping with reprocessing the whole event
(16:47):
that took place, just to see and check where the
caregivers are emotionally. If we see that they are just stuck,
grief stricken, can't move, then we do referrals to license
clinical social workers or grief therapy. We also enact the
after death care if they want the hands washed or
(17:10):
defeat washed or anything like that. And all of that
goes right back to the beginning of listening actively and
having a conversation of what the individual wants, brother it's
at home or any hospice facility. If I had a
terminal disease and I hired one of you to be
(17:32):
my duela, and I said to you, will you help
me take my own life? Could you slash? Would you
I consider being an end of life to it to
be a non medical role, and so that's not my
purview at all. But if you're asking if as a
(17:56):
as an end of life dula, if I was supporting
someone in their value, I wouldn't call that ending their life.
You know, we all have different values around that, but
I think this is a conversation that people are having
about choosing when they want to do that, and there
are different ways that that happens. I think we all
(18:17):
should be talking about it, and we should be sharing it,
and people should be able to state their own wishes.
In my case, I would want to get an understanding
of what you are thinking about when you're talking about
ending your life. Are you talking about medical aid and
dying which is not legal in many states? It's only
legal and about eleven states, So if I'm in Merland,
(18:41):
I can't assist you with that, you know, anyway legal
if you are talking about yeah, legally, if you're talking
about VSA volunteeringly stopping eating and drinking, anyone can assist
you with that, And that really depends on how comfortable
the Duela feels honoring that request for you, and people
(19:03):
choose that to hasten their death. In most cases, they
will begin to stop eating, they're not taking in any fluids,
they're not taking in any substance, and you will see
that the dying process will begin fairly quickly. So that
would be my determination, finding out what is it that
(19:23):
you're really talking about? When it comes now, I would
help with VC and I will provide resources for you.
If you're talking about medical aid and dying, well, can
you talk about the different stages of death? I know
you were just touching upon it, but what are the stages?
So if you're a couple of months out, you are
(19:44):
mostly still able to communicate. And this really is not
I'm going to give you a general description, but it
depends on the disease, your age, your genetics, you know.
So in the beginning you're still a fluid, You're able
to have a conver sation, but you begin to turn inwardly.
(20:04):
There's a period of quietness, reflection. Many people will start
talking about their childhood, you know, what's meaningful to them.
We also address concerns around guilt. You know, anything that
anyone wants to confess to us. We address that, any
unfinished business, forgiveness, we talk about that. And then when
(20:29):
we start moving closer to the ending part of death,
we notice that there's a what they call a death rattle.
If you've heard of the death rattle, where the noise
is right, the gurgling and the throat, that's an indication
of getting close. You may see marbling of the skin
(20:49):
where you see where the veins are not really as
puffy as they normally would be. The skin does a
return back to its regular position. At this time most
of the time that the person is not talkative at all.
You may be able to say wake up, and they
may come up for a couple of minutes, you know,
then go back. So now you're not really able to
(21:13):
communicate with them. And then the last minutes two hours
there's basically no communication. They're sleeping with the mouth open,
You're not seeing any breathing from the chest. A lot
of times you can look at the chest and see
that there's no movement. And so these are some of
(21:34):
the signs that happen across the course, depending on where
you catch a person at in their journey. Has anybody
ever confessed things to you? They have not, but that
I have heard of other dulers saying yes, wow, yeah,
that's fascinating. Yeah, I heard some confessions from family members.
(21:55):
Oh wait a second, yeah, what do you they confess
to you? Yeah? I do find that that as as
we've all seen, right, when when you're with someone in
a moment that is really profound like that or the
moments around it. Um, I think it. People become very
(22:15):
personal and even a stranger will will speak of things
that they might not normally do. And I have found
that family members want to talk, and maybe it's better
that it's not a family member. Maybe it's better that
it's someone that they, you know, have not had a
(22:35):
long relationship with, and they want to they want to talk.
I've been very, very surprised by that and very honored. Yeah,
there's a lot more to come after the short break
(22:58):
and we're back. I wonder this is a question for
both of you, but what an extraordinary time it is
when somebody is transitioning and you're with them. I mean,
it's it's religious almost And how do you not feel
(23:21):
sad yourself after somebody has passed. How do you deal
with the connections that you make with the people that
you're helping and advocating for. Where's the self advocation and
the self love for you when you're helping so many
people do this? I would say on my end as
a newer person to this, before I was allowed to
(23:42):
volunteer at hospice, or before I was able to come
on as an annealda training as a DULA, I was
asked questions about what kind of attitude I was taking
and whether I had self care. That's a really big
part of the training. It's making sure or that people
are not making it about themselves as well said, and
(24:05):
know how to do what you just describe, which is
really hard, which is not to be about you, but
still be in the room and you know you can't
disconnect And I know I do cry and I do
after process that when I leave. For me, you know
Laura talked about we do have a self care section
(24:27):
that we talk about when we are doing the training.
But for me, like for instance, Ali, I supported someone
over a year, ninety three year old lady. It's very
hard not to connect when you're supporting someone for that
amount of time. And I also was asked to attend
(24:47):
her funeral service. Aterwards, I stayed in contact and checked
on her son, who was her primary caregiver a couple
of months, three to six months afterwards, and I took
got three months. I needed to clear my own space
before I could help the next client. Also a part
of our training we talk about rituals and last breath
(25:10):
rituals for family members. So as a ritual, I have
a very strong connection to water and so I have
to get myself to a place where I see water.
Here water thus my ritual of how our process and
cleanse myself from the person or the client that I
just served. I read about a woman who wanted so
(25:35):
much to be by the beach or on the beach
when she died, and her duela got sand and put
her hand in sands and sort of scented the room
with coconut and created a world that felt like the beach,
you know, put the music on of the waves, which
was so extraordinary, you know, because it's it's simple, but
(26:00):
it's such a beautiful way to help that person die,
especially if they're in a very antiseptic room, to have
that imagination. I know when my stepfather was dying, he
turned to my mother. He died during COVID, he was
ninety nine, and he said, I'm so tired. Can I go?
(26:22):
And my mother said, oh, yes, you can go, And
she talked about him being in a canoe and they
were going down the river and she sort of created,
like Adula, a wonderful picture and he just kind of
fell asleep, which to me was the most beautiful way
one can possibly die. But I believe that that Duela's
(26:45):
can kind of create those wishes and those atmospheres that
people dream about or want when they are passing. You know,
I've never been in a hospital where somebody said, oh here,
let me turn on some classical music, and you know
it just that kind of care is not there exactly,
(27:05):
It's true, and you know, the alternative to that kind
of experience is often the shopping channel. I'm surprised and
how many times I see that people are watching something
that really shouldn't be end of life TV fare and
I wonder if the person in the hospital, you know,
(27:26):
if that's what they wanted or not. But I don't
like to think of people exiting this world to the
shopping channel. Oh no, just my Peppie, please don't not
with QBC Wow, we also use a tool called guided imagery.
So in that case, you know, we would ask you
(27:46):
what is your favorite place, and we would incorporate all
the sounds and smells and everything that we can make
that scessery happen and that connection happen for you. It
sounds like your mother instinctually did god imagery exactly. She did.
She didn't realize she was doing that, but she did.
It's amazing. Yeah, So Laura, you're the resident Death Duela
(28:10):
at Historical Congressional Cemetery, right, yes, which makes me really
pretty pretty nutty. And tell me about those We created
this as an idea. It's not been done. There are
artists in residents at some cemeteries. Congressionals are really special place.
They're allowing a space now for death positive activities, and
(28:31):
so we're just creating it as we go every Saturday,
having people come and just talk about these things and
do activities. I'm really into active what do they mean?
And certainly I'd love one of you to talk about
the death positivity movement. What is a good death? I
hear that phrase over and over again, a good death.
(28:52):
I'll jump in and give you my definition of death positive.
And I have to say that my mother is death negative.
So I often have conversations with my mom about death
positive and death negative. But I used to be involved
with talking about sex and the term sex positive came up,
(29:16):
and I remember thinking, well, that's weird, like what does
that mean? What it means is that you accept that
this is part of the normal experience. Death is part
of the normal experience, and that death is neither good
nor bad, and that the idea that a good death
to me would be one where you I think most
(29:36):
people would say, has dignity, peaceful. It's a peaceful situation,
It is without undue pain and where someone feels that
they are loved. And that is part of what we're doing,
is as end of life dulas is, we're providing an
environment of love for fellow human being, whether there's family
(29:58):
there or not. And that, to me is what we're
describing when we talk about a good death and death positive.
What does your mother mean when she says death negative?
I think she feels that death is somewhere someone has
made a mistake and she says it's fine afterwards, you
(30:19):
can be positive about it. But I can't feel positive
about this. And my mother is a black woman who
has fought all her life to live and has has
faced enormous challenges and had to scrap and fight for
herself in a world that wasn't wasn't really supporting her.
So I totally understand her failing and I understand her
(30:41):
distrust of medical um you know, expertise. Does your mother
want to have a duela with her that would require
a conversation about about this, and I you know, I
think a lot of us live in families where that's
that's a difficult conversation to have. I'm willing to talk
to my mom about it. Hey Mom, Yeah, but I
(31:03):
think that we start the conversation. That's what we're trying
to do with this project that you read about, is
start the conversations. Yeah, I have aging parents now. Like
I said, my father's in hospice and I can't help
but think about my own mortality. It keeps me up
sometimes at night and I think about death and I
think about my children. And it was always, like I
(31:27):
said at the beginning of the podcast, it was we
never spoke about it in my family ever. And I
have a series of grandparents that took their own lives
and that was never spoken of. And so for me
right now, at this moment in my life, I'm actually
fascinated by all of this information because I think there
(31:50):
is a way to have some kind of control over
how you leave. And there's so much of it, like
you said, Laura, is discussion. You know, at some point
I'm going to talk to my children about it. I
want to talk to my husband about it. What are
we thinking, how do we want to do this. Where
do I want to be? What do I want to be?
(32:10):
And I think most people ignore the subject until either
it's too late or they sort of, you know, look
to the medical community and so like you deal with this,
we can't deal with it. So true, I agree with that.
I think we often seek hospice care too late, you know,
(32:32):
and we often have the conversation too late. And I
think on one of your previous podcasts you had a
guest that was talking about near death experience. Right, thank
you for listening. Val sure like and subscribe. But you know,
we we we can be at a restaurant and choke
(32:54):
and die. We you know, we don't have to be
eighty and ninety. You look at the young of those
that are dying on the streets, you know. And I
went back to my university to train or to talk
about advanced care planning and dying, and I was absolutely
amazed at the students in the age range of twenty
two to twenty eight that were willing to listen and
(33:17):
had comments afterwards. And so I just connected with a
business here in Columbia, Maryland. She put out a death cafe,
which I did two weeks ago. We hadn't had one
in Columbia, Maryland since twenty thirteen. We had a waiting list,
we had to refuse people. So individuals COVID unfortunately helped
(33:39):
us bring out death, you know, and so the fear
is still there. But to have someone be able to
hold a space without judgment while you are considering your
mortality is a good thing that's happening in our society. Now,
now for my listeners, can you explain a death cafe?
(34:00):
Because I don't want a reservation? What am I going
to order at the death cafe? A conversation, Laura, So
tell me about it. I've been too many death cafes,
but I facilitated one for the first time yesterday. And
just like Val said, there's a real interest among young people.
(34:23):
This was not just a bunch of eighty year olds.
It wasn't even you know, us sixty some year olds.
There were There was quite a mix of people. But
one phenomena that I've found in Val and I've talked
about this is it's almost all women. It's like the
Union of Men decided that we will send one to
each of your events. But that's it, just one. And
(34:46):
I don't understand it. Why are women so interested in
going to death cafes and coming to death positive events
and becoming duelists. I just think the connection to our emotions.
You know, big boys don't cry and wipe your tears,
and you're the man of the house, you know, So
(35:06):
they don't have opportunities to grieve openly. And a grieving
man has a reputation of and I'm not speaking about
all men, but has a reputation of being a weak man,
and so they are not get ready to come into
a space to talk about death, to show their emotions.
(35:27):
So a lot of that conversation with men go unspoken.
For instance, you know, I have brought my family along
because I've constantly normalized the conversation. When I first started
talking to my son about it, he would sneak out
of the room in the middle of the conversation. I'm like,
where is the boy? Where's the child? You know? And
(35:47):
then the December before COVID, my son came to my
home and said, MA, this is what I want you
to do if I die. And it was completely completely
honest to God, differently than what I would have done.
And so when we don't have these conversations Ali, we
don't honor the very people that are in our homes,
(36:10):
the people that we sleep beside, the people that we love.
You know, we assume this is what they want, but
because we don't have enough carriage and our throats to say,
let's sit down and talk about it. But look after
you normalize it. It took eight years for me to
normalize the conversation with him. But guess what, I now
know how to serve my son and I feel at
(36:33):
peace with being able to do that. And he's only
thirty years old. So you have to get past the
fear of thinking that just because you talk about death,
you're going to die, you know, to have a better death,
have the conversation about it. And so when you go
to the death cafes, basically there are forums in which
(36:54):
you discuss preparing for death, how you would like to
transition in figuring that out. Is that correct? There's no
real agenda, We just let discussions flow organically. Yeah. I
think that death cafees, which were they were a UK
phenomena originally, they are one of the many ways that
(37:17):
people are starting to have these conversations, and I find
it a very profound one for the reason Bell just said,
which is there is no agenda, there's there isn't actually
any advice given or tools. It is a bunch of
unique strangers come into a room and it's a space
in which you have to discuss dying and death and
(37:38):
you you listen to each other, you talk, and everything
that happens is because of the people in that room
that day, which is a kind of a unique experience.
And I just it's funny. I just had one of
the young ladies in her early thirties maybe latter twenties,
she attended the death cafe that I had. I just
(38:00):
got an email from her yesterday saying that I set
with my father who transitioned. I use some of the
topics that we talked about in the deaf cafe, and
I thank you so much for holding that space for
us to learn. Wow, and we'll be right back. Welcome
(38:28):
back to go. Ask Gali, so, how do how do
I approach this conversation and how do other people talk
to their loved ones. I have two answers to that question,
really briefly. One is start with humor. I think that's
very important. I also think to look at it as
(38:50):
kindness rather than as some sort of burden or something creepy.
It is a kindness to let your wishes be known
and toss your values to your loved ones. And it
doesn't have to be you know, at the end of life.
So it's kindness and humor that I can do. I
(39:11):
suggest to start from a place of yourself. So when
you're sitting down at the table with your loved ones,
you're saying, this is what I would like for you
to do for me. I have been considering more my
mortality lately. This is how I want you to honor me.
I want to be at the beach. I would like
(39:33):
to have a certain type of music played. So now
it's I I I. Because you're if you're sitting down
saying tell me what you want to tell me what
you want, that's abrupt. You know I'm not ready. You
may be considering your mortality, but what makes you think
I'm considering minds? And so it's more of I I.
And that's how I got my son to the place,
(39:54):
because I normalized the conversation with I eye so much
he was comfable enough to say, Okay, well let me
now tell a mom what it is that I want
her to do for me, and so start with the
eye and then be open to whatever it is. Rather
thy are willing to accept what you're saying or not,
(40:15):
you know, share it. Come back a couple of days,
a couple of months later, go back with the I
have been considering my mortality and this is what I
want you to do for me to honor my life
as I transition. That's great. You know, I've done a
podcast with people about money. You know, people are very
(40:35):
reluctant to talk about money, and one of the things
we discussed was putting together a book for your children
that just tells you where money is. And I'm wondering
if there's a way for people to have conversations and
even create a book that's sort of your my transitioning
(40:56):
to afterlife book, you know, if later on you're not
lucid enough to maybe verbalize it that says this is
how I would like to leave. It's interesting, Ali, because
there are quite a few tools like that, but people
don't know they exist. They don't have anyone to help
them work on it. And I think if people knew
(41:20):
that they were out there and that was like your
Thanksgiving activity, some of the family members will leave the room.
But it's a really wonderful experience to do it. I have,
for example, what we call a death binder, and there
are a lot of death binders out there that you
can create. You can create one that's already got all
the tabs on it, and there are books and workbooks
(41:42):
and end of life duelists also do this work. We
help people find the tool that suits them and they
help them get to work on it. And that's really
my mission. I want to get people to start working
on that and then edit it throughout their lives. That
would be perfect. Do you encourage people to write their
own obituary? I do, and we had a workshop on
(42:06):
that at Congressional Cemetery a couple of weeks ago, and
fascinating to me, it was young people mostly. It was
a big group and the question that got people got
stuck on surprised me. I don't know if either of
you would agree, but it was the part on the
form where I asked them to fill out who they
(42:27):
were leaving behind, and people got stuck and really felt
a lot of emotion. Wow, that's something to think about, right.
And here's the best review I could find of the
people who participated in that. Last month, a young person
wrote back to me later and said, I did not
(42:48):
like my obituary as written, and so I'm making changes
in my life so that my obituary will be different.
Oh that's amazing, that's great. Yes, that's great. I can
think of no better outcome. Yeah, that's why we're doing
this projects. It's not just about dying, it's about how
we live. I love that. Yeah. I think people have
(43:09):
dreams a lot. You hear people say, oh, I had
this dream, or sometimes I have this idea about going
to my own funeral and you know, who's going to
be there, who's going to show up, what does it
look like? And I think it might be an interesting
exercise for people to kind of have a creative writing
assignment where they got to be kind of a ghost
(43:31):
at their own funeral. What would they want it to
look like? Right, who would they want to be there,
what are the flowers like? What? You know? Just that
would be kind of a wonderful exercise. We actually do
that as part of the training. You do yes, yeah, oh,
well look at me. You're halfway there exactly. You know
(43:54):
my last question because you have been so incredibly insightful
and helpful. What are you seeing when people are preparing
for their own death? Now, besides the people that come
to the Deaf Cafe, are you seeing that the majority
(44:15):
of people are not dealing with it, They're not confronting it,
and they're not talking about it or I mean, Laura
earlier you said you sort of see a shift where people,
particularly young people, are starting to discuss it a lot more.
I definitely admire the fact that there are younger people
that are willing to have that conversation. I'm really worried
(44:35):
about people who don't because it causes chaos and fear.
But I think the answer is people generally do not
make plans and have not figured out what their values are,
and are not living as if they're mortal. I always
forget that word we are mortals. Yeah, you know, even
in hospice, a lot of people don't have a plan.
(44:56):
I've walked into people who just lost a loved one
and had no plan for where even the body of
the person was going to go or what that person
wanted as far as disposition or memorialization. So I think
we're in denial as a culture, and I think we
(45:17):
live better if we get out of that denial. So
maybe the young people will lead us on this. Yeah,
I hope. So the young people have a lot of
work to do in our country. Sorry kids, yeah, sorry kids.
But I say to my daughter's every day like it's
up to you fix the climate, fix all of it.
(45:38):
So I've asked you many questions about death and transitioning
and being a duela. So now I'm going to turn
the tables and allow both of you to ask me
a question. And I'm going to start with valve. You
can ask me anything you want. Wow. Well, I'm going
to ask you a serious question, but I really want
(45:59):
to ask you a funny question. I have squirrels that
are eating up my lights. I really want to know
how to give rid of squirrels. They're disrespectful. But let
me just go to the real question. You need to
borrow my hound dog. My hound dog will hunt a squirrel.
I'm telling you he pulls me on the leash because
he chases squirrels all the time. I'm gonna I'm gonna
FedEx him to you for a week. Yeah. Yeah, But
(46:23):
but well, now that you know the row of the duela,
and if Laura and I were your duela. What would
be one element or what would be something that you
would like for us to do to help you transition peacefully. Well,
(46:45):
one thing is I do like touch, so I would
definitely want Laura holding one hand and Value holding another hand.
I would like music, a nice classical box, masks and
be minor. I would like in This is where I'm
really going to challenge you. I would like to have
(47:07):
my bed covered in dogs when I die. I love dogs,
My dogs sleep on my bed. I just you'd have
to go to the pound. I don't know the neighborhood.
You'd have to just rally up a whole bunch of
dogs and put them on the bed. And I think
that would that would be And this is just you know,
(47:29):
I'm just starting this process, and believe me, when I
start writing in my journal, I will add things. There'll
be mint, chocolate chip ice cream somewhere in there. But
to me, that would be a nice, peaceful thing. To
have the touch of two women maternal and to have
all these dogs on my bed, That to me is heaven.
(47:50):
There would not be any shopping network. Thank you for sharing,
And Laura, can I answer anything for you? I'm envisioning
you surrounded by dog. It's beautiful. So mine is a
little serious. Okay. You mentioned your father, and that's he's
(48:12):
working his way through the process. And I know that
you mentioned that he had dementia as my dad, one
of my dads did. And I remember the minute that
I was I decided, I'm going to remember you this way, Daddy,
and I held his hands and I said, I'm going
to remember you like this. He was teaching me how
to grow. What is the moment that you think of
(48:34):
when you when your dad was your dad, the way
you remembered him, and that you're going to hold. Oh,
what a lovely question. I think the image that I
hold is my father. He was a reporter for the
Washington Post, and later in life he discovered painting and
(48:54):
he loved to paint, and he could sit on a
grassy knoll for hours and meticulously paint a watercolor. And
I think that's when he was most at peace, when
he was happiest. So those are the moments I hold
close and remember and like to remember about him. Is
(49:16):
when he would be, you know, in his tattered corduroys
and an old sweater, sitting there painting away. Because that
was sort of him in his essence, that's beautiful. Thank
you for doing this, Thank you for enlightening everybody. It's
a incredible subject and it's like you said, I think
(49:37):
it's something we should all be talking about all the time.
And when I put down that roast chicken tonight, George
Stephanopolis is going to get an earful because we're going
to start talking about this. I'm gonna say to him,
if you don't tell me what you want to do,
that I'm going to have my own plans for you
and you're not gonna like it. Thank you, guys, thank
you very much for this. We appreciate it. You know,
(50:01):
I'm sitting in a hotel room and it's snowing outside
in Boston, and as I said at the beginning of
this podcast, I'm very immersed in this. And after I
sign off, I'm going back to the hospital to see
my mother. And one of the things I've really realized,
and you don't really realize until you're in that situation.
They and when I say they, I mean my parents
(50:23):
and people in the geriatric community. They need that hand holding.
They need to know that they're supported and loved. And
particularly when I was talking to Laura. You know, the
idea that she's in these hospitals where people have nobody
else around them and she holds their hand is so
(50:44):
huge because at the end, if you're transitioning, the idea
that the touch of human being is right there is
so imperative. So thank you both Beloria and Laura for
telling us their stories, providing such an important service. And
for more info on what you've heard in this episode,
(51:06):
check out our show notes. Be sure to subscribe, rate
and review Go ask Alli, and follow me on social
media on Instagram at the real Alli Wentworth. Now. If
you'd like to ask me a question or suggest a
guest or a topic to dig into, I would love
to hear from you, and there's a bunch of ways
you can do it. You can call or text me
at three two three three six four sixty three five six,
(51:27):
or you can email a voice memo right from your
phone to Go ask Alli podcast at gmail dot com.
And if you leave a question, you just might hear
it on Go ask Alli. Go ask Alli is a
production of Shondaland Audio and partnership with iHeartRadio. For more
(51:51):
podcasts from Shondaland Audio, visit the iHeartRadio, app, Apple podcasts,
or wherever you listen to your favorite shows.
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