September 24, 2024 • 40 mins
After Tina’s dad died, she was devastated. But was her grief “disordered”?
WITH:
+ Lashanna Williams, A Sacred Passing
AND INFORMED BY:
Dying Without Regrets According to a Death Doula - VICE
Seattle-area grief groups bring mourning into the light - Seattle Times
What's A Mental Disorder? Even Experts Can't Agree - NPR
DSM-5-TR turns normal grief into a mental disorder | Miss Foundation
Why was prolonged grief disorder added to the DSM? - American Psychiatric Association
How Long Should It Take to Grieve? Psychiatry Has Come Up With an Answer. - The New York Times
Prolonged Grief Is Now Labelled a Disorder. Not All Psychiatrists Agree. - VICE
It’s Mourning in America | The New Yorker
How People Of Color Can Experience Grief Differently Than White People | HuffPost Life
Grief, Unmedicated - by P.E. Moskowitz - Mental Hellth
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hey, it's enk Faska. Case gets into some heavy topics
about mental health. But keep in mind that I'm a journalist,
not a doctor. So in the description of this and
every episode, I'll leave you a list of relevant resources
and links to the things I'm reading, and while you're listening,
take care.
Speaker 2 (00:23):
I would describe it as being sad about a change,
a feeling of missing and longing. Sometimes you know it,
sometimes you don't. Sometimes it comes back just as sharp
as the moment the news came or the moment the
change happened. It can feel heavy on a body, it
(00:45):
can feel too big, and it can also be a catalyst.
And I also think it's it's just another feeling. I
think grief doesn't have time limit. Grief is as long
as we're conscious. What how a person's gonna want me,
(01:18):
What person's gonna want me, What a person's gonna lock me,
What person's gonna want me, A person's gonna want me?
Speaker 1 (01:25):
What a person's gonna want me?
Speaker 2 (01:27):
What person's gonna lock me? When I press it in anxiety.
Speaker 1 (01:48):
I think about death a lot, both literal deaths and
metaphorical ones. And I also tend to gravitate towards other
people who think about death a lot, and you understand
that if you're paying attention, life will present you with
never ending opportunities to grieve. Lashawna Williams, the voice you
heard at the beginning of this episode, is a death
(02:10):
dula and grief worker, which means she tends to those
who are dying and she tends to the grieving after
the dead have passed. She does this work as part
of an organization called a Sacred Passing. Part of the
comfort that Lashauna provides is allowing making space for every
feeling that accompanies big endings and transitions, all kinds of deaths,
(02:30):
and grief is not just one feeling. It's many, overlapping
and unpredictable feelings about the moments the people that you
have lost. Lashawna and I agree that in some ways,
many ways, grief is normal and the sense that it
will come for us all and we agree that in
that way, grief doesn't belong in a special category. It's
(02:51):
part of the whole kaleidoscope of human emotions. This is
basket Case and I'm NK a reluctant member of the
Dead Mom Club, and this episode is about what happens
when ordinary human experiences like grieving are classified as mental disorders.
This is Tina.
Speaker 3 (03:11):
How do I describe him? He was just very loved.
Speaker 1 (03:17):
A few years ago, Tina's dad died. She says that
when he was alive, he was funny, He dressed well,
and he smelled good. He liked music, especially Al Green
and classic reggae. When Tina was little, she and her
dad would dance to Motown together in their living room.
But Tina's dad could also be reserved. More than once
(03:40):
in our conversation, she used the word stoic to describe him.
Speaker 3 (03:44):
We weren't the closest growing up. He was around. I
grew up with him, but he was I think emotionally
kind of absent. So he had a strained relationship. And
then my parents divorced, and then I think how he
he really wanted to make an effort to build a
relationship with his children after that fact, to try to,
(04:07):
I don't know, just salvage what he could. So the
majority of our closeness was definitely later on. He would
break out the old photo albums and go through all
the different photos aunts and uncles and great aunts and
great uncles, and just going all the way back and
explaining who everyone was and how a lot of these
(04:31):
figures in his life helped him immigrate to the United States.
He didn't have the best childhood growing out back in Jamaica,
and he wouldn't talk about it too much, and you know,
he would actually get pretty emotional. It was nice to
be able to reconcile.
Speaker 1 (04:52):
Sometimes her dad complained about pain and Tina would encourage
him to see a doctor, but her dad would brush
her off.
Speaker 3 (05:00):
He would try to hide if he wasn't feeling well.
He was that old school macho like I don't need
to see a doctor. He's like, I don't have time
for this shit. I have to work, like I don't
want to deal with hospitals or doctors.
Speaker 1 (05:14):
Until one day the pain was so bad that he
couldn't pretend it wasn't happening. He couldn't deny it, and
so this time when Tina told him to go to
the hospital, he listened. At the hospital, her dad was
treated for an infection and doctors told him that they'd
seen a mass. It was possible it was nothing, but
they thought it was best to remove it to be safe.
It wasn't warning. Weeks went by, maybe months, and by
(05:37):
the time her dad returned to the hospital, then nothing
had turned into cancer and the cancer had started to spread.
Speaker 3 (05:44):
I remember speaking to the oncologist when he got his
first diagnosis, just like asking, was my dad got to die?
Like what's the prognosis? Like how many years does he
have left?
Speaker 1 (05:58):
An oncologist told Tina that was treatment and her dad
might live to his seventies ten more years, but he
could also die after five.
Speaker 3 (06:04):
So I think just knowing that and looking at survival rates,
I think that's when it hit me like, oh shit,
that's right, Like one day, we're all going to lose
our parents. We all have to go sometime. Maybe maybe
this is happening sooner than I thought. And yeah, I
kind of just went right into the caregiver mode from
that point.
Speaker 1 (06:24):
Caregiver mode was natural for Tina, a social worker whose
job at the time was working with lung cancer patients,
helping them navigate the administrative aspects of their care.
Speaker 3 (06:34):
Even though my father didn't have lung cancer yet colon cancer,
I felt like it was adjacent enough that I had
a general idea of what resources might already be out there,
what questions to ask, what to expect as far as
next steps.
Speaker 1 (06:48):
Seeah, yeah, what does that mean?
Speaker 3 (06:50):
Like you are very long to do list that would
never end. So a lot of phone calls like understand
what their diagnosis is, what reason sources are available for patients,
how to access support programs, sugle company cost of treatment,
git yourself up to date with whatever you need to
learn about that particular cancer or that particular image blood
(07:12):
test that he would have to get done, learning with
the insurance company on the phone, with the doctor's offices
being on hold for forever. I literally was so busy.
It just felt more comfortable to just keep trying to
juggle everything instead of trying to change anything. I don't
think at the time to go to my brother's and
be like, holy shit, you guys, this is crazy. I'm scared.
Speaker 1 (07:34):
Tina's dad was still undergoing treatment in twenty twenty when
the city they lived in went into lockdown, so Tina
spent even more time at her dad's house, juggling her
relationship with work with being her dad's primary caregiver.
Speaker 3 (07:47):
It was weird being a caregiver because there's this total
role reversal when it's your parent, and I feel like
it's something we should all see coming of like miles away,
Like they take care of us when we're little, and
then when they're older, we're going to take care of that.
Speaker 1 (08:06):
Four years had passed since her dad's diagnosis. For four years,
her dad had been living with cancer, mostly in secret,
but suddenly death was everywhere collective, out in the open.
As the death toll from COVID nineteen kept rising, Tina
tried to convince her dad to take his illness seriously,
to make appointments with his oncologists and keep them so, like.
Speaker 3 (08:28):
My instinct is, okay, you have this diagnosis, let's treat
it and let's do everything we can.
Speaker 1 (08:34):
And then when your dad got his diagnosis, was the
cancer vari advance already?
Speaker 3 (08:38):
It wasn't. That's that's the frustrating part. Yeah, it wasn't.
And he was treating it like it was an inconvenience,
like ough, but I have to work. I can't not work.
Speaker 1 (08:49):
Caring for him was kind of a power struggle. They
argued a lot, and her dad was usually so strong,
so effortlessly self reliant, that seeing him so vulnerable was
awkward for both of them.
Speaker 3 (09:01):
He was a very independent person, like he hated asking
for help, so to see him in a state where
he kind of had no choice but to rely on
people for help for very intimate things. He was angry
and frustrated. He would yeah, or just get visibly upset,
(09:21):
or try to tell us that he doesn't need help,
like getting off the couch, for example, when he very
much actually really didn't need help. I don't know if
he was fully understanding what was going on and a
brain treatment necessarily, and then finally when he was ready
(09:44):
and it was something that he couldn't ignore anymore, it
just progressed quickly from there, maybe like a year later,
it went to an advanced stage. I was just trying
to stay calm and stay focused. I didn't really stop
the process, my feelings or anything in the moment.
Speaker 1 (10:03):
Eventually, Tina's dad became too weak to move and also
too weak to refuse her help. She started giving him
sponge baths, carrying him from the couch to the bathroom.
Speaker 3 (10:12):
Looking back on it, it was just such a traumatic
time for me. Everything is just so like choppy, and
I just remember at the very end when it was
really hitting me, like we've passed the point of no return.
He's not getting better. Let's just try to keep him
comfortable until he passes away. He even apologized to me
(10:37):
a few times, like towards the very end, and I
was like, look, you took care of me. I'm going
to take care of you.
Speaker 1 (10:45):
More with Tina.
Speaker 3 (10:46):
After the break, towards the end of his life, his
body just couldn't keep up anymore, just kept getting weaker
(11:06):
and weaker, and then he couldn't like talk anymore. He
was mostly just in and out of consciousness or saying
weird things like not knowing where he was or thinking
he was somewhere that he wasn't. That's the first goodbye
I would say, because when I couldn't like talk to
my dad anymore. Like his body is here, his heart
(11:30):
is still beating, he's still breathing, but I can't really
talk to him that much. I wasn't sure when he
was going to pass and I wanted to be there.
I didn't want him to be by himself. He passed
away at home. I was there, my brother was there,
(11:52):
some of our family members were there. We got to
say that we love each other and that we're going
to be okay, and then he passed away. I still
it just yes, it's just something that's just burned in
my memory.
Speaker 1 (12:14):
Does it even feel like you're going back to your life?
How did it feel?
Speaker 3 (12:17):
You know, like extremely jarring. It's not something that I
process until after he passed, when I was like, holy shit,
I can't believe all of that happened. I was doing
so much towards the end that I was neglecting my
own health and my own well being. You know, I
wasn't eating, I wasn't sleeping, I was under extreme amounts
(12:39):
of stress for so long. I feel like I adapted
almost every part of my life to make sure that
caregiving came first. And then all of a sudden, it's
just it's just over, Like Okay, you don't have to
do this anymore. And it was just this huge feeling
of now what.
Speaker 1 (12:58):
Tina crashed after years of constant worrying about the future,
of wondering when it would happen, of hoping it wouldn't,
of bracing for the pain, of wondering whether she'd be
able to withstand it. After years of clenched anticipation the
future had arrived, it was just.
Speaker 3 (13:14):
A lot of like quite, I just felt like my
whole life just fell apart.
Speaker 1 (13:22):
Tina unclenched, and all at once, all of that tension
just released.
Speaker 3 (13:42):
I feel like this will happen for people who aren't
even close with their parents, or maybe had no relationship
with their parents, that they'll still feel grief because your
parents are like a huge part of who you are
and your identity and where you came from. To lose
that connection, it's losing a part of yourself, and also
(14:05):
having to say goodbye to these milestones I was kind
of looking forward to in my lifetime. Maybe one day
I'll get married and my parents will be there, and
maybe I'll have a kid one day, and I'll get
to see my parents become grandparents, and so also saying
goodbye to those like dreams, like being robbed of the
(14:29):
opportunity of making up for lost time for not really
being close throughout childhood. I feel like by the time
my dad and I am reconciled and we actually had
some sort of relationship, it was cut short. It was
just like shit diming. The first year after he passed away,
(14:53):
I was just very numb and just feeling so completely
lost because I've never been through this before.
Speaker 1 (15:01):
Her dad's absence, the permanent and enduring fact of it
didn't feel like something real. Tina would think of something,
she should text him, something she wanted to tell him
on the phone.
Speaker 3 (15:13):
I would have those same moments as you where I'm like, oh,
I need to ask my dad a question about something.
Speaker 1 (15:21):
And then she'd remember.
Speaker 3 (15:22):
But now I can't. Like there's this person who I
would talk to all the time and see all the time,
and now they're gone.
Speaker 1 (15:29):
It was surreal.
Speaker 3 (15:31):
The last thing you want to do is to have
to learn to live without them, but it's just necessary. Life, unfortunately,
goes on. So it's like a mixture of accepting that
old life that you had with them around, like that's
no longer, so accepting that, and then trying to find
meeting in this next chapter in your life. So yeah,
(15:55):
it was a lot of figuring out how to fill
that void. Was so emotional and so sensitive. I was
crying so much. I needed to like tell myself to
come up for air and like take a breakout. We
just like spend the next ten minutes not crying and
just like trying to do something else.
Speaker 1 (16:17):
Yeah, there's a lot of stress built up in your
body that has to go somewhere for sure.
Speaker 3 (16:21):
Yeah, as you.
Speaker 1 (16:22):
Said, you weren't able to process that while it was
happening for reasons that make perfect sense to me. So
I'm not really surprised to hear that you had like
an ongoing physical release because it had been five years.
Speaker 3 (16:32):
Yeah, I was just so devastated at the beginning that
I definitely needed extra support, like not family, not friends,
not someone who knows me, Like a neutral place where
I can just really explain like how truly devastated I was.
I think I was still trying in a way to
just be strong for everyone, and I just couldn't. I
(16:54):
couldn't do that any longer. I just needed to space
where I could just be devastated and just be great.
Speaker 1 (17:00):
Eventually, she saw a therapist, one who practiced cognitive behavioral therapy,
or CBT. When CBT was developed in the nineteen sixties,
it was seen as a more scientific approach to the
then dominant psychoanalytic model of therapy, the kind of therapy
that analyzes and interprets your past in order to understand
what you're feeling now. CVT is now one of the
(17:21):
most common kinds of therapy. It and other behavioral strategies
are focused on the present, what you did today, what
you're going to do tomorrow. It's focused more on measurable
outcomes than gaining psychological insights.
Speaker 3 (17:33):
So it was a lot of like just trying to
help me narrow downw to do list and like kind
of keep organized, and then also just like try to
work in some self care techniques.
Speaker 1 (17:45):
Tina's new to do list, planning her dad's funeral, cleaning
out his apartment, telling his friends and family. The paperwork
the list felt never ending, and checking things off the
list seemed to require a set of life skills that
she hadn't known she would need and that no one
had ever taught her.
Speaker 3 (18:01):
I just I didn't know where to start.
Speaker 1 (18:03):
So she made a list of goals with her therapist,
the things that she would do to feel better, the
tasks that she would complete each week. At the end
of each session, the therapist assigned her homework and they
would check in about it in the next session, and.
Speaker 3 (18:16):
Then I'll show up the next time and I'm like, oh,
I didn't get a chance to do that. I'm just
I'm overwhelmed. I'm devastated. I I just couldn't do it,
And she would get visibly upset. She's like, why not
but I thought you were going to try to do this.
Speaker 1 (18:35):
Tina tried to follow the therapists guidance, but again, like.
Speaker 3 (18:38):
I'm crying like all the time. The last thing I
want to do is like go for a walk, shake
a bubble bath.
Speaker 1 (18:44):
Were you crying a lot? In your sessions with your therapist.
Speaker 3 (18:47):
I would always tell her that I was just overwhelmed
and exhausted. I was really struggling with anxiety. Mostly like
I would be cleaning my dad's place and I'd come
across something that would just remind me of a time
(19:07):
when he was really struggling and really in pain, and
it would just take me right back to that moment
of just like feeling helpless and wanting to help him,
and just feeling sad and scared that he was in
pain and going through all these things. And then before
you know it, like I just like can't breathe, Like
I'm just like in the throes of an anxiety attack.
(19:31):
I was really angry with my father, angry that he
didn't prioritize his own health, angry that we didn't get
to spend more time together, and just feeling robbed of that.
And I think that's something that I didn't expect. I
think I needed help just processing everything that I went through,
Like starting in the past, I just had a lot
(19:54):
to unpack and I just needed a moment to say,
holy shit, I can't believe all that happened. That was crazy.
I can't believe I did all of that.
Speaker 1 (20:07):
Tina wanted to talk about the swirl of feelings, her
residual fear, her new anxieties, her anger, but CBT looked
away from all that from the root of Tina's emotional overwhelm. Instead,
her therapists focus on the future when she would feel
better again, more like her old self.
Speaker 3 (20:23):
I felt like I was acting or like living a
double life because I was trying to like disconnect the
grieving side of me from the rest of me. And
I just needed to pause to just be in the moment,
because in the five years I was caregiving, I wasn't
in the moment at all.
Speaker 2 (20:44):
I was just.
Speaker 3 (20:46):
I was just trying to keep my dad alive, and
I just felt like I was kind of self disrupting.
Speaker 1 (20:52):
Tina felt like the therapist didn't understand her, and she
didn't understand why her grief is all encompassing or why
it eclipsed everything else in her life.
Speaker 3 (21:00):
So I think ultimately she got frustrated with me and
just made me feel like I wasn't craving properly, or
that I was doing something wrong. In the first couple
of months after.
Speaker 1 (21:11):
He passed, what kinds of things would she say to you?
Speaker 3 (21:13):
She said she saw that I was trying, and that
she was trying to give me all the tools that
she could, but I just wasn't using them. She said,
I don't know why, but you just won't come out
of your comfort zone. And that was so hurtful because
in that point in my life, I felt like I
couldn't be more thrown out of my comfort zone ever.
(21:37):
She said, you keep choosing the pain. She said, I
don't think there's anything more that I could do for you,
like you should see a psychiatrist, maybe go on some medication.
Our last session was cut short because she was like, yeah,
we're done here. I don't know if I could do
anything else for you.
Speaker 1 (21:57):
Abruptly, the therapist ended their session. It would be their
last one.
Speaker 3 (22:01):
I was like, is this happening. I went over to
my partner. I was like, did I do something wrong?
And I was like, I'm not that bad. And then
I was like, wait a second, he passed away five
months ago. I feel bad. I feel like I'm grieving incorrectly.
But at the same time, this can't be right. It's
still such a short period of time, Like it can't
(22:24):
just be me, Like something just didn't feel right.
Speaker 1 (22:27):
Did you ever think about seeing a different kind of therapist?
Speaker 3 (22:30):
I was too scared at that point.
Speaker 1 (22:31):
What were you scared of.
Speaker 3 (22:33):
That would happen again? That someone else would say like, Yep,
you're grieving incorrectly, You're doing something wrong, You're not trying
hard enough. I just didn't want to be criticized. I
just really needed a moment to just be in it,
whether it was wrong or not, If that makes sense.
I think I started looking That same week, I started
(22:55):
looking for a psychiatrist, and I decided that for now
I was just going to do that and hold off
on therapy.
Speaker 1 (23:05):
After the break. Psychiatry enters death work. I said White,
and I'm like, I'm like, that's what she would like.
This is me with my dad and sister picking out
(23:25):
my mom's casket. No one had ever talked to me
about doing this, so I had no idea what to expect.
Speaker 3 (23:34):
Yeah, a white cask.
Speaker 1 (23:35):
You can't go wrong with it because, like I seen
a picture of your mother and red. So if you
get a real, beautiful white casket, it's a completely bizarre experience,
like what I imagine buying a car is like, except
it's not a car. It's a little housebed that my
mom will now reside in forever. I can ask you
(23:59):
what a Tina's dad died a year after my mom
in twenty twenty one. My mom only lived four months
after her cancer diagnosis, so I didn't experience the same
drawn out process that Tina did, and even if I had,
I couldn't possibly know what her particular specific grief feels like.
But I do know what it's like to watch someone
(24:21):
slip from this realm into another. The silence for my
mom's last breath should have been is seered into my memory.
I'm familiar with the undulating waves of grief. Being close
to a death to a person who is dying feels
like being plucked from whatever beach you were on enjoying
your life, and then deposited on some other, distant, foreign one,
(24:44):
a beach you knew you'd visit eventually, but at some
other point, far far in the future. Almost four years
after my mom's death, the grief is still unpredictable, surprising me.
It's hard to imagine that it will ever go away,
or that i've I wanted to. So I can't imagine
that tinis therapist was right, that there's a right way
(25:06):
to grief or a wrong way, or was six months
really too long for her to still be reeling from
the loss of her dad.
Speaker 4 (25:15):
So everything that I do is around grief, as in bereavement,
someone died. That's the only work that I do.
Speaker 1 (25:24):
Doctor Joanne Cacciatore is a research professor in the School
of Social Work at Arizona State University and an expert
on traumatic grief. She has a PhD in Trauma and
Death studies. And I didn't even know that was a thing.
Speaker 4 (25:36):
So in that context, the way that I define grief
is very complex because it's not just a singular emotion.
Speaker 1 (25:44):
Katiatore is the author of several books and nearly one
hundred peer review journal articles about grief, and she's also
experienced traumatic loss herself, so she knows firsthand what deep
grief feels like and also the ways our culture tends
to respond to people who are mourning. How long does
grief take?
Speaker 4 (26:01):
So I would say that for some losses there is
no end point, but where people seem to turn a
corner in my research but also in my clinical experience
working directly with people, the point where they feel like
they can start to trust this is my experience, seemed
to be somewhere between year four and year five when
(26:21):
they start to go, Okay, maybe I'm going to make
it through this, maybe I can survive this. But it's
like lifting a weight. It's not that the grief gets
lighters or that the grief goes away. It's that you
build emotional muscle to carry the grief, just as you
would if you lifted a weight. If you lifted a
(26:41):
fifteen pound barbell once today and it was really heavy,
and then tomorrow you did it again, and the next
day you did it twice, and the next day you
did it four time, and the next day you did
it twelve times, and you kept doing it. You're building
the muscle, and it's the same thing with grief. You're
learning not to be afraid of your emotional experiences, whatever
(27:03):
they are. Despair and the rage, guilt, shame, terror, You
learn to feel the primary honest emotion. Then you go, Okay,
I can handle it. I've handled it before. I shouldn't
have to handle it, don't want to handle it, But
here I am handling it. Someone who has acute or
subacute traumatic grief and it's presenting itself in symptoms like
(27:27):
social withdrawal or intense longing agony pain. Those are all
normal things, and of course, just because their normal doesn't
mean it's not painful.
Speaker 1 (27:44):
But a controversial new diagnosis called prolonged grief disorder, or PGD,
suggests that while some grief experiences are normal, others are
disordered or pathological, so intense that they require psychiatric attention.
PGD became official in twenty twenty two WHO when it
was added to the DSM that's the Diagnostic and Statistical Manual,
(28:04):
basically the American Psychiatric Association's guidebook for Mental disorders now.
Psychiatrists who push for this diagnosis say grief only becomes
a problem in certain extreme cases, like when someone is
in crisis, where the grief is so overwhelming that it's
hard for them to function, especially if that feeling lasts
for over a year. They believe that giving grief an
(28:26):
official diagnosis can help relieve that kind of suffering. Adding
grief to the DSM means doctors can treat it with
medication and also bill insurance companies for helping people with
their condition, but not everyone agrees. Critics like doctor Catiatore
argue that the symptoms linked to PGD are just part
of the natural process of grieving. These symptoms can include
(28:49):
experiences like feeling disbelief about the death, feeling lonely, or
feeling like a part of you has died along with
the person you lost. Doctor Catiatore isn't alone in thinking
that labeling grief as a mental disorder could lead to
unnecessary medical treatment, including the use of antidepressants, which might
not be effective for someone simply going through a natural
grieving process. She also worries it will lead to additional
(29:12):
stigma for grieving people. Instead of addressing the root causes
of their suffering.
Speaker 4 (29:18):
Rather than considering social, historical, economic context, they would just
rather take a reduction, a thick approach.
Speaker 3 (29:30):
We go in and we.
Speaker 4 (29:31):
Say these are the emotions you're allowed to steal this
and how long you're allowed to steal them. You have
to return to productivity as quickly as possible, because if
you don't, then you have a pathology. And we're going
to have to treat you as if you have a pathology.
And here's what that is, symptom. And if you're not
better by then then you have pathological grief. Then you
are disordered. It's been thirty years, and I still grieve
(29:54):
for my daughter. If by grieving you mean feeling fad,
feeling despair and anger and protesting, I still protest. I
mean thirty years, really, I still protest. The other day
I had a nice, good thob in the car because
I missed my daughter. And that's perfectly fine. And if
someone tried to tell me I'm disordered, I'll tell them
(30:15):
to go fuck off. Sorry, but I will. I have
no qual about that at all.
Speaker 1 (30:20):
As an academic social worker, doctor Caciatore sees grief within
its broader cultural context, and she sees PGD as an
individual solution to a larger systemic issue.
Speaker 4 (30:30):
I mean, do you know one of the questions that
defines prolonged grief disorder is are you lonely? So you
have increased risk of having prolonged grief quote disorder if
you're lonely. But there's no social responsibility of other people there.
Speaker 1 (30:44):
Grieving is stigmatized in mainstream US culture. We aren't supposed
to talk about death or our grief. Both made people
really uncomfortable. We aren't practiced at supporting grieving people. We
avoid them, and we avoid mentioning the person they lost.
We're afraid to make someone sad with their memory. But
all of that actually makes grieving harder and lonelier. And
when you're.
Speaker 4 (31:04):
Talking about social determinants of health, we know loneliness is
a greater risk factor for poor health outcomes than commonly
recognized one. The Surgeon General made that announcement with the
data showing that loneliness is more risky to the health
than smoking, dideites, than obesity. And yet it's the core
emotional experience of people after catastrophic loss. So is it
(31:28):
the loneliness that's killing people or is it the.
Speaker 1 (31:31):
Grees KATCHIATORI points out that diagnoses aren't free from politics,
even though they're often written as if they exist outside
of social context. So even though the PGD diagnosis was
created in a society where loneliness and isolation are pretty common,
it doesn't really factor that in.
Speaker 4 (31:47):
I conducted one sety where we ask people how satisfied
were you with the level of grief support that you
received from these various groups? We act about therapists and
medical provide writers, psychiatrists and medical doctors, obgyns. We asked
about neighbor's family friends. We asked about all of these
(32:08):
different groups. Okay, how satisfied were you? The highest rated
human group satisfaction was sixty seven percent, and it was
support groups. People wanted to connect with others who were
like them, and most all the other groups ranked at
about fifty percent are below talkable. Social workers, for example,
ranked at thirty two percent, which is really grid. But
(32:32):
animals ranked eighty nine percent satisfaction.
Speaker 1 (32:36):
So what does that tell you?
Speaker 4 (32:37):
It tells you we all need a rescue animal number one.
But it also tells you that when it comes to
good grief support, be like a dog's just sit and stay.
Don't judge, don't rush when people are crying, don't avert
your gaze. Don't take your best friend out for a
drink when she saed because her son died of chanther.
Just it with her, and poor of her, photographed with her,
(32:58):
and remember. And the problem is we don't have enough
relationships like that, because that is what helps greeting people
their community, their local community. If people are educated and
if people have the tool that they need to support
greeting people, they can do it, can come together in
(33:18):
local communities and really help people.
Speaker 1 (33:20):
And in that way, learning to face grief our own
and someone else's is just part of being a more
empathic human.
Speaker 4 (33:27):
I'm passionate, obviously, and I'm passionate because I lived it
thirty years ago. My life changed and I would never
be the same again.
Speaker 1 (33:48):
Tina did meet with the psychiatrist for her grief. She
told him that she wanted to feel less dis less anxious.
She wanted to be able to go to work, spend
time with her family, with her partner. The psychiatrist asked
her about her medical history, whether she has any allergies,
and at the end of their first meeting, he prescribed
her an antidepressant.
Speaker 3 (34:07):
So I was on lexaprel and then I switched to
well butrin because lexapro I just felt too many side effects.
Speaker 1 (34:18):
Tina did not meet the criteria for complex grief disorder,
and she doesn't remember receiving an official diagnosis, but she
does remember that she felt helpless and out of control.
She wasn't eating, She wasn't sleeping. She was stuck in
a stressed response for months. The death of her dad
was more than she could handle on her own, and
she needed support. The way she put it is, she
(34:39):
needed crisis management. And taking antidepressants gave Tina a sense
of relief because treating her depression made room for the
other feelings, the things she wanted to feel. It made
enough room for her grief.
Speaker 3 (34:53):
So it was good to get to a place where
I can just be open and on its like, I
am going through this, I am grieving, but I'm also
still me.
Speaker 1 (35:06):
And you didn't. You didn't lose access to your grief
or your grieving process. The medication helped you to be
able to take care of yourself. It didn't necessarily like
numb your feelings through the grief, which I think is important.
Speaker 3 (35:18):
Oh yeah, yeah. The way I see it is the
medication helps bring you to your natural baseline, so then
you can actually go ahead and try whatever therapeutic techniques
they're throwing at you, because without it, like I wasn't
in a proper place to be doing those things.
Speaker 1 (35:40):
To like receive what the CVT therapist was offering.
Speaker 3 (35:43):
Yeah, exactly, I think I'm much better now. I'm still
taking antidepressants because I still feel like it's a benefit
for me. Maybe it's something I'll come off of in
the future, but for now it's doing the trick. And
I've just been doing a lot of journaling, exercise, meditation,
(36:05):
all the good stuff that I just was not ready
to do early on. I think the biggest thing was
getting to a point where I could just accept myself
and accept that I was grieving, and that grieving, no
matter what you do or how you decide to express it,
it's going to be messy. And of course you don't
(36:27):
want to be in pain. Of course you want to
feel better, but at the same time, because they're gone,
the only real connection that you have to your loved
one anymore is the grief, and in a way, this
is like the last way I'll ever be able to
express some sort of love or affection towards them, And
(36:48):
I just wish it was reframed in that way that
it's okay to grieve, but you can still take care
of yourself, and you could be grieving, but you could
also still be living.
Speaker 2 (37:13):
If someone has died and they are open to it,
washing and shrouting a body is really important to me.
It's a very very common ritual for me to practice
with people. It's not what a funeral director would do,
or it's not what a doctor would do. I have
a really beautiful clay bowl and that's what I use
(37:36):
for body washing. If it's your thing, you can put
some herbs in there. People are really specific about what
they want, sunflower petals and will a lee rose petals
in a lavender camomeal, mugwort, pe and e petals, and
at that point, with warm water in the bowl, we
just gently washed the body. Dying is really hard and
(37:58):
a lot of times people aren't that mobile at the end.
So saliva pools and spaces and the sticky from medical
tape and so we can remove all that, remove medical gunk.
The shrouds that we use are just to cream linen,
and so we will lay someone on that linen and
(38:19):
decorate the shroud with any notes or letters that people wanted,
anything that the person wanted with them, and we wrap
them up and wrap them from their feet up. It's
an opportunity to metabolize some of your grief, to honor
the grief, really think about that person and thank them
(38:42):
for their life. Time slows down a little bit. It's
not okay, let's get back to work. Let's do this
and move slowly through it and have an opportunity to
be It was really a long explaination.
Speaker 1 (39:07):
No, that was really perfect.
Speaker 3 (39:09):
This sounds so lovely.
Speaker 1 (39:09):
I wish I really wish we could have done that.
Speaker 2 (39:11):
I wish you could have too.
Speaker 1 (39:24):
Basket Case is a production of molten Heart and iHeart Podcasts.
This series was created and is executive produced by Jasmine J. T.
Green and it is hosted, produced, and sound designed by
me NK Nicole Kelly. Special thanks to Tina Oshawna Williams
and Joanne Cacier Torre production support from Siona Petros and
(39:45):
Amani Winner. Sonic elements provided by Chad Corey Adrian Lily
as our mixed engineer. Our theme is blue and orange
by Command Jasmine. Our show art was created by Sinay Rolson,
factchecking by Serena Solyn Lee. Google services provided by Rowan
Marin and File. Our executive producer from iHeart Podcasts is
Lindsay Hoffman.
Hey, it's enk Faska. Case gets into some heavy topics
about mental health. But keep in mind that I'm a journalist,
not a doctor. So in the description of this and
every episode, I'll leave you a list of relevant resources
and links to the things I'm reading, and while you're listening,
take care.
Speaker 2 (00:23):
I would describe it as being sad about a change,
a feeling of missing and longing. Sometimes you know it,
sometimes you don't. Sometimes it comes back just as sharp
as the moment the news came or the moment the
change happened. It can feel heavy on a body, it
(00:45):
can feel too big, and it can also be a catalyst.
And I also think it's it's just another feeling. I
think grief doesn't have time limit. Grief is as long
as we're conscious. What how a person's gonna want me,
(01:18):
What person's gonna want me, What a person's gonna lock me,
What person's gonna want me, A person's gonna want me?
Speaker 1 (01:25):
What a person's gonna want me?
Speaker 2 (01:27):
What person's gonna lock me? When I press it in anxiety.
Speaker 1 (01:48):
I think about death a lot, both literal deaths and
metaphorical ones. And I also tend to gravitate towards other
people who think about death a lot, and you understand
that if you're paying attention, life will present you with
never ending opportunities to grieve. Lashawna Williams, the voice you
heard at the beginning of this episode, is a death
(02:10):
dula and grief worker, which means she tends to those
who are dying and she tends to the grieving after
the dead have passed. She does this work as part
of an organization called a Sacred Passing. Part of the
comfort that Lashauna provides is allowing making space for every
feeling that accompanies big endings and transitions, all kinds of deaths,
(02:30):
and grief is not just one feeling. It's many, overlapping
and unpredictable feelings about the moments the people that you
have lost. Lashawna and I agree that in some ways,
many ways, grief is normal and the sense that it
will come for us all and we agree that in
that way, grief doesn't belong in a special category. It's
(02:51):
part of the whole kaleidoscope of human emotions. This is
basket Case and I'm NK a reluctant member of the
Dead Mom Club, and this episode is about what happens
when ordinary human experiences like grieving are classified as mental disorders.
This is Tina.
Speaker 3 (03:11):
How do I describe him? He was just very loved.
Speaker 1 (03:17):
A few years ago, Tina's dad died. She says that
when he was alive, he was funny, He dressed well,
and he smelled good. He liked music, especially Al Green
and classic reggae. When Tina was little, she and her
dad would dance to Motown together in their living room.
But Tina's dad could also be reserved. More than once
(03:40):
in our conversation, she used the word stoic to describe him.
Speaker 3 (03:44):
We weren't the closest growing up. He was around. I
grew up with him, but he was I think emotionally
kind of absent. So he had a strained relationship. And
then my parents divorced, and then I think how he
he really wanted to make an effort to build a
relationship with his children after that fact, to try to,
(04:07):
I don't know, just salvage what he could. So the
majority of our closeness was definitely later on. He would
break out the old photo albums and go through all
the different photos aunts and uncles and great aunts and
great uncles, and just going all the way back and
explaining who everyone was and how a lot of these
(04:31):
figures in his life helped him immigrate to the United States.
He didn't have the best childhood growing out back in Jamaica,
and he wouldn't talk about it too much, and you know,
he would actually get pretty emotional. It was nice to
be able to reconcile.
Speaker 1 (04:52):
Sometimes her dad complained about pain and Tina would encourage
him to see a doctor, but her dad would brush
her off.
Speaker 3 (05:00):
He would try to hide if he wasn't feeling well.
He was that old school macho like I don't need
to see a doctor. He's like, I don't have time
for this shit. I have to work, like I don't
want to deal with hospitals or doctors.
Speaker 1 (05:14):
Until one day the pain was so bad that he
couldn't pretend it wasn't happening. He couldn't deny it, and
so this time when Tina told him to go to
the hospital, he listened. At the hospital, her dad was
treated for an infection and doctors told him that they'd
seen a mass. It was possible it was nothing, but
they thought it was best to remove it to be safe.
It wasn't warning. Weeks went by, maybe months, and by
(05:37):
the time her dad returned to the hospital, then nothing
had turned into cancer and the cancer had started to spread.
Speaker 3 (05:44):
I remember speaking to the oncologist when he got his
first diagnosis, just like asking, was my dad got to die?
Like what's the prognosis? Like how many years does he
have left?
Speaker 1 (05:58):
An oncologist told Tina that was treatment and her dad
might live to his seventies ten more years, but he
could also die after five.
Speaker 3 (06:04):
So I think just knowing that and looking at survival rates,
I think that's when it hit me like, oh shit,
that's right, Like one day, we're all going to lose
our parents. We all have to go sometime. Maybe maybe
this is happening sooner than I thought. And yeah, I
kind of just went right into the caregiver mode from
that point.
Speaker 1 (06:24):
Caregiver mode was natural for Tina, a social worker whose
job at the time was working with lung cancer patients,
helping them navigate the administrative aspects of their care.
Speaker 3 (06:34):
Even though my father didn't have lung cancer yet colon cancer,
I felt like it was adjacent enough that I had
a general idea of what resources might already be out there,
what questions to ask, what to expect as far as
next steps.
Speaker 1 (06:48):
Seeah, yeah, what does that mean?
Speaker 3 (06:50):
Like you are very long to do list that would
never end. So a lot of phone calls like understand
what their diagnosis is, what reason sources are available for patients,
how to access support programs, sugle company cost of treatment,
git yourself up to date with whatever you need to
learn about that particular cancer or that particular image blood
(07:12):
test that he would have to get done, learning with
the insurance company on the phone, with the doctor's offices
being on hold for forever. I literally was so busy.
It just felt more comfortable to just keep trying to
juggle everything instead of trying to change anything. I don't
think at the time to go to my brother's and
be like, holy shit, you guys, this is crazy. I'm scared.
Speaker 1 (07:34):
Tina's dad was still undergoing treatment in twenty twenty when
the city they lived in went into lockdown, so Tina
spent even more time at her dad's house, juggling her
relationship with work with being her dad's primary caregiver.
Speaker 3 (07:47):
It was weird being a caregiver because there's this total
role reversal when it's your parent, and I feel like
it's something we should all see coming of like miles away,
Like they take care of us when we're little, and
then when they're older, we're going to take care of that.
Speaker 1 (08:06):
Four years had passed since her dad's diagnosis. For four years,
her dad had been living with cancer, mostly in secret,
but suddenly death was everywhere collective, out in the open.
As the death toll from COVID nineteen kept rising, Tina
tried to convince her dad to take his illness seriously,
to make appointments with his oncologists and keep them so, like.
Speaker 3 (08:28):
My instinct is, okay, you have this diagnosis, let's treat
it and let's do everything we can.
Speaker 1 (08:34):
And then when your dad got his diagnosis, was the
cancer vari advance already?
Speaker 3 (08:38):
It wasn't. That's that's the frustrating part. Yeah, it wasn't.
And he was treating it like it was an inconvenience,
like ough, but I have to work. I can't not work.
Speaker 1 (08:49):
Caring for him was kind of a power struggle. They
argued a lot, and her dad was usually so strong,
so effortlessly self reliant, that seeing him so vulnerable was
awkward for both of them.
Speaker 3 (09:01):
He was a very independent person, like he hated asking
for help, so to see him in a state where
he kind of had no choice but to rely on
people for help for very intimate things. He was angry
and frustrated. He would yeah, or just get visibly upset,
(09:21):
or try to tell us that he doesn't need help,
like getting off the couch, for example, when he very
much actually really didn't need help. I don't know if
he was fully understanding what was going on and a
brain treatment necessarily, and then finally when he was ready
(09:44):
and it was something that he couldn't ignore anymore, it
just progressed quickly from there, maybe like a year later,
it went to an advanced stage. I was just trying
to stay calm and stay focused. I didn't really stop
the process, my feelings or anything in the moment.
Speaker 1 (10:03):
Eventually, Tina's dad became too weak to move and also
too weak to refuse her help. She started giving him
sponge baths, carrying him from the couch to the bathroom.
Speaker 3 (10:12):
Looking back on it, it was just such a traumatic
time for me. Everything is just so like choppy, and
I just remember at the very end when it was
really hitting me, like we've passed the point of no return.
He's not getting better. Let's just try to keep him
comfortable until he passes away. He even apologized to me
(10:37):
a few times, like towards the very end, and I
was like, look, you took care of me. I'm going
to take care of you.
Speaker 1 (10:45):
More with Tina.
Speaker 3 (10:46):
After the break, towards the end of his life, his
body just couldn't keep up anymore, just kept getting weaker
(11:06):
and weaker, and then he couldn't like talk anymore. He
was mostly just in and out of consciousness or saying
weird things like not knowing where he was or thinking
he was somewhere that he wasn't. That's the first goodbye
I would say, because when I couldn't like talk to
my dad anymore. Like his body is here, his heart
(11:30):
is still beating, he's still breathing, but I can't really
talk to him that much. I wasn't sure when he
was going to pass and I wanted to be there.
I didn't want him to be by himself. He passed
away at home. I was there, my brother was there,
(11:52):
some of our family members were there. We got to
say that we love each other and that we're going
to be okay, and then he passed away. I still
it just yes, it's just something that's just burned in
my memory.
Speaker 1 (12:14):
Does it even feel like you're going back to your life?
How did it feel?
Speaker 3 (12:17):
You know, like extremely jarring. It's not something that I
process until after he passed, when I was like, holy shit,
I can't believe all of that happened. I was doing
so much towards the end that I was neglecting my
own health and my own well being. You know, I
wasn't eating, I wasn't sleeping, I was under extreme amounts
(12:39):
of stress for so long. I feel like I adapted
almost every part of my life to make sure that
caregiving came first. And then all of a sudden, it's
just it's just over, Like Okay, you don't have to
do this anymore. And it was just this huge feeling
of now what.
Speaker 1 (12:58):
Tina crashed after years of constant worrying about the future,
of wondering when it would happen, of hoping it wouldn't,
of bracing for the pain, of wondering whether she'd be
able to withstand it. After years of clenched anticipation the
future had arrived, it was just.
Speaker 3 (13:14):
A lot of like quite, I just felt like my
whole life just fell apart.
Speaker 1 (13:22):
Tina unclenched, and all at once, all of that tension
just released.
Speaker 3 (13:42):
I feel like this will happen for people who aren't
even close with their parents, or maybe had no relationship
with their parents, that they'll still feel grief because your
parents are like a huge part of who you are
and your identity and where you came from. To lose
that connection, it's losing a part of yourself, and also
(14:05):
having to say goodbye to these milestones I was kind
of looking forward to in my lifetime. Maybe one day
I'll get married and my parents will be there, and
maybe I'll have a kid one day, and I'll get
to see my parents become grandparents, and so also saying
goodbye to those like dreams, like being robbed of the
(14:29):
opportunity of making up for lost time for not really
being close throughout childhood. I feel like by the time
my dad and I am reconciled and we actually had
some sort of relationship, it was cut short. It was
just like shit diming. The first year after he passed away,
(14:53):
I was just very numb and just feeling so completely
lost because I've never been through this before.
Speaker 1 (15:01):
Her dad's absence, the permanent and enduring fact of it
didn't feel like something real. Tina would think of something,
she should text him, something she wanted to tell him
on the phone.
Speaker 3 (15:13):
I would have those same moments as you where I'm like, oh,
I need to ask my dad a question about something.
Speaker 1 (15:21):
And then she'd remember.
Speaker 3 (15:22):
But now I can't. Like there's this person who I
would talk to all the time and see all the time,
and now they're gone.
Speaker 1 (15:29):
It was surreal.
Speaker 3 (15:31):
The last thing you want to do is to have
to learn to live without them, but it's just necessary. Life, unfortunately,
goes on. So it's like a mixture of accepting that
old life that you had with them around, like that's
no longer, so accepting that, and then trying to find
meeting in this next chapter in your life. So yeah,
(15:55):
it was a lot of figuring out how to fill
that void. Was so emotional and so sensitive. I was
crying so much. I needed to like tell myself to
come up for air and like take a breakout. We
just like spend the next ten minutes not crying and
just like trying to do something else.
Speaker 1 (16:17):
Yeah, there's a lot of stress built up in your
body that has to go somewhere for sure.
Speaker 3 (16:21):
Yeah, as you.
Speaker 1 (16:22):
Said, you weren't able to process that while it was
happening for reasons that make perfect sense to me. So
I'm not really surprised to hear that you had like
an ongoing physical release because it had been five years.
Speaker 3 (16:32):
Yeah, I was just so devastated at the beginning that
I definitely needed extra support, like not family, not friends,
not someone who knows me, Like a neutral place where
I can just really explain like how truly devastated I was.
I think I was still trying in a way to
just be strong for everyone, and I just couldn't. I
(16:54):
couldn't do that any longer. I just needed to space
where I could just be devastated and just be great.
Speaker 1 (17:00):
Eventually, she saw a therapist, one who practiced cognitive behavioral therapy,
or CBT. When CBT was developed in the nineteen sixties,
it was seen as a more scientific approach to the
then dominant psychoanalytic model of therapy, the kind of therapy
that analyzes and interprets your past in order to understand
what you're feeling now. CVT is now one of the
(17:21):
most common kinds of therapy. It and other behavioral strategies
are focused on the present, what you did today, what
you're going to do tomorrow. It's focused more on measurable
outcomes than gaining psychological insights.
Speaker 3 (17:33):
So it was a lot of like just trying to
help me narrow downw to do list and like kind
of keep organized, and then also just like try to
work in some self care techniques.
Speaker 1 (17:45):
Tina's new to do list, planning her dad's funeral, cleaning
out his apartment, telling his friends and family. The paperwork
the list felt never ending, and checking things off the
list seemed to require a set of life skills that
she hadn't known she would need and that no one
had ever taught her.
Speaker 3 (18:01):
I just I didn't know where to start.
Speaker 1 (18:03):
So she made a list of goals with her therapist,
the things that she would do to feel better, the
tasks that she would complete each week. At the end
of each session, the therapist assigned her homework and they
would check in about it in the next session, and.
Speaker 3 (18:16):
Then I'll show up the next time and I'm like, oh,
I didn't get a chance to do that. I'm just
I'm overwhelmed. I'm devastated. I I just couldn't do it,
And she would get visibly upset. She's like, why not
but I thought you were going to try to do this.
Speaker 1 (18:35):
Tina tried to follow the therapists guidance, but again, like.
Speaker 3 (18:38):
I'm crying like all the time. The last thing I
want to do is like go for a walk, shake
a bubble bath.
Speaker 1 (18:44):
Were you crying a lot? In your sessions with your therapist.
Speaker 3 (18:47):
I would always tell her that I was just overwhelmed
and exhausted. I was really struggling with anxiety. Mostly like
I would be cleaning my dad's place and I'd come
across something that would just remind me of a time
(19:07):
when he was really struggling and really in pain, and
it would just take me right back to that moment
of just like feeling helpless and wanting to help him,
and just feeling sad and scared that he was in
pain and going through all these things. And then before
you know it, like I just like can't breathe, Like
I'm just like in the throes of an anxiety attack.
(19:31):
I was really angry with my father, angry that he
didn't prioritize his own health, angry that we didn't get
to spend more time together, and just feeling robbed of that.
And I think that's something that I didn't expect. I
think I needed help just processing everything that I went through,
Like starting in the past, I just had a lot
(19:54):
to unpack and I just needed a moment to say,
holy shit, I can't believe all that happened. That was crazy.
I can't believe I did all of that.
Speaker 1 (20:07):
Tina wanted to talk about the swirl of feelings, her
residual fear, her new anxieties, her anger, but CBT looked
away from all that from the root of Tina's emotional overwhelm. Instead,
her therapists focus on the future when she would feel
better again, more like her old self.
Speaker 3 (20:23):
I felt like I was acting or like living a
double life because I was trying to like disconnect the
grieving side of me from the rest of me. And
I just needed to pause to just be in the moment,
because in the five years I was caregiving, I wasn't
in the moment at all.
Speaker 2 (20:44):
I was just.
Speaker 3 (20:46):
I was just trying to keep my dad alive, and
I just felt like I was kind of self disrupting.
Speaker 1 (20:52):
Tina felt like the therapist didn't understand her, and she
didn't understand why her grief is all encompassing or why
it eclipsed everything else in her life.
Speaker 3 (21:00):
So I think ultimately she got frustrated with me and
just made me feel like I wasn't craving properly, or
that I was doing something wrong. In the first couple
of months after.
Speaker 1 (21:11):
He passed, what kinds of things would she say to you?
Speaker 3 (21:13):
She said she saw that I was trying, and that
she was trying to give me all the tools that
she could, but I just wasn't using them. She said,
I don't know why, but you just won't come out
of your comfort zone. And that was so hurtful because
in that point in my life, I felt like I
couldn't be more thrown out of my comfort zone ever.
(21:37):
She said, you keep choosing the pain. She said, I
don't think there's anything more that I could do for you,
like you should see a psychiatrist, maybe go on some medication.
Our last session was cut short because she was like, yeah,
we're done here. I don't know if I could do
anything else for you.
Speaker 1 (21:57):
Abruptly, the therapist ended their session. It would be their
last one.
Speaker 3 (22:01):
I was like, is this happening. I went over to
my partner. I was like, did I do something wrong?
And I was like, I'm not that bad. And then
I was like, wait a second, he passed away five
months ago. I feel bad. I feel like I'm grieving incorrectly.
But at the same time, this can't be right. It's
still such a short period of time, Like it can't
(22:24):
just be me, Like something just didn't feel right.
Speaker 1 (22:27):
Did you ever think about seeing a different kind of therapist?
Speaker 3 (22:30):
I was too scared at that point.
Speaker 1 (22:31):
What were you scared of.
Speaker 3 (22:33):
That would happen again? That someone else would say like, Yep,
you're grieving incorrectly, You're doing something wrong, You're not trying
hard enough. I just didn't want to be criticized. I
just really needed a moment to just be in it,
whether it was wrong or not, If that makes sense.
I think I started looking That same week, I started
(22:55):
looking for a psychiatrist, and I decided that for now
I was just going to do that and hold off
on therapy.
Speaker 1 (23:05):
After the break. Psychiatry enters death work. I said White,
and I'm like, I'm like, that's what she would like.
This is me with my dad and sister picking out
(23:25):
my mom's casket. No one had ever talked to me
about doing this, so I had no idea what to expect.
Speaker 3 (23:34):
Yeah, a white cask.
Speaker 1 (23:35):
You can't go wrong with it because, like I seen
a picture of your mother and red. So if you
get a real, beautiful white casket, it's a completely bizarre experience,
like what I imagine buying a car is like, except
it's not a car. It's a little housebed that my
mom will now reside in forever. I can ask you
(23:59):
what a Tina's dad died a year after my mom
in twenty twenty one. My mom only lived four months
after her cancer diagnosis, so I didn't experience the same
drawn out process that Tina did, and even if I had,
I couldn't possibly know what her particular specific grief feels like.
But I do know what it's like to watch someone
(24:21):
slip from this realm into another. The silence for my
mom's last breath should have been is seered into my memory.
I'm familiar with the undulating waves of grief. Being close
to a death to a person who is dying feels
like being plucked from whatever beach you were on enjoying
your life, and then deposited on some other, distant, foreign one,
(24:44):
a beach you knew you'd visit eventually, but at some
other point, far far in the future. Almost four years
after my mom's death, the grief is still unpredictable, surprising me.
It's hard to imagine that it will ever go away,
or that i've I wanted to. So I can't imagine
that tinis therapist was right, that there's a right way
(25:06):
to grief or a wrong way, or was six months
really too long for her to still be reeling from
the loss of her dad.
Speaker 4 (25:15):
So everything that I do is around grief, as in bereavement,
someone died. That's the only work that I do.
Speaker 1 (25:24):
Doctor Joanne Cacciatore is a research professor in the School
of Social Work at Arizona State University and an expert
on traumatic grief. She has a PhD in Trauma and
Death studies. And I didn't even know that was a thing.
Speaker 4 (25:36):
So in that context, the way that I define grief
is very complex because it's not just a singular emotion.
Speaker 1 (25:44):
Katiatore is the author of several books and nearly one
hundred peer review journal articles about grief, and she's also
experienced traumatic loss herself, so she knows firsthand what deep
grief feels like and also the ways our culture tends
to respond to people who are mourning. How long does
grief take?
Speaker 4 (26:01):
So I would say that for some losses there is
no end point, but where people seem to turn a
corner in my research but also in my clinical experience
working directly with people, the point where they feel like
they can start to trust this is my experience, seemed
to be somewhere between year four and year five when
(26:21):
they start to go, Okay, maybe I'm going to make
it through this, maybe I can survive this. But it's
like lifting a weight. It's not that the grief gets
lighters or that the grief goes away. It's that you
build emotional muscle to carry the grief, just as you
would if you lifted a weight. If you lifted a
(26:41):
fifteen pound barbell once today and it was really heavy,
and then tomorrow you did it again, and the next
day you did it twice, and the next day you
did it four time, and the next day you did
it twelve times, and you kept doing it. You're building
the muscle, and it's the same thing with grief. You're
learning not to be afraid of your emotional experiences, whatever
(27:03):
they are. Despair and the rage, guilt, shame, terror, You
learn to feel the primary honest emotion. Then you go, Okay,
I can handle it. I've handled it before. I shouldn't
have to handle it, don't want to handle it, But
here I am handling it. Someone who has acute or
subacute traumatic grief and it's presenting itself in symptoms like
(27:27):
social withdrawal or intense longing agony pain. Those are all
normal things, and of course, just because their normal doesn't
mean it's not painful.
Speaker 1 (27:44):
But a controversial new diagnosis called prolonged grief disorder, or PGD,
suggests that while some grief experiences are normal, others are
disordered or pathological, so intense that they require psychiatric attention.
PGD became official in twenty twenty two WHO when it
was added to the DSM that's the Diagnostic and Statistical Manual,
(28:04):
basically the American Psychiatric Association's guidebook for Mental disorders now.
Psychiatrists who push for this diagnosis say grief only becomes
a problem in certain extreme cases, like when someone is
in crisis, where the grief is so overwhelming that it's
hard for them to function, especially if that feeling lasts
for over a year. They believe that giving grief an
(28:26):
official diagnosis can help relieve that kind of suffering. Adding
grief to the DSM means doctors can treat it with
medication and also bill insurance companies for helping people with
their condition, but not everyone agrees. Critics like doctor Catiatore
argue that the symptoms linked to PGD are just part
of the natural process of grieving. These symptoms can include
(28:49):
experiences like feeling disbelief about the death, feeling lonely, or
feeling like a part of you has died along with
the person you lost. Doctor Catiatore isn't alone in thinking
that labeling grief as a mental disorder could lead to
unnecessary medical treatment, including the use of antidepressants, which might
not be effective for someone simply going through a natural
grieving process. She also worries it will lead to additional
(29:12):
stigma for grieving people. Instead of addressing the root causes
of their suffering.
Speaker 4 (29:18):
Rather than considering social, historical, economic context, they would just
rather take a reduction, a thick approach.
Speaker 3 (29:30):
We go in and we.
Speaker 4 (29:31):
Say these are the emotions you're allowed to steal this
and how long you're allowed to steal them. You have
to return to productivity as quickly as possible, because if
you don't, then you have a pathology. And we're going
to have to treat you as if you have a pathology.
And here's what that is, symptom. And if you're not
better by then then you have pathological grief. Then you
are disordered. It's been thirty years, and I still grieve
(29:54):
for my daughter. If by grieving you mean feeling fad,
feeling despair and anger and protesting, I still protest. I
mean thirty years, really, I still protest. The other day
I had a nice, good thob in the car because
I missed my daughter. And that's perfectly fine. And if
someone tried to tell me I'm disordered, I'll tell them
(30:15):
to go fuck off. Sorry, but I will. I have
no qual about that at all.
Speaker 1 (30:20):
As an academic social worker, doctor Caciatore sees grief within
its broader cultural context, and she sees PGD as an
individual solution to a larger systemic issue.
Speaker 4 (30:30):
I mean, do you know one of the questions that
defines prolonged grief disorder is are you lonely? So you
have increased risk of having prolonged grief quote disorder if
you're lonely. But there's no social responsibility of other people there.
Speaker 1 (30:44):
Grieving is stigmatized in mainstream US culture. We aren't supposed
to talk about death or our grief. Both made people
really uncomfortable. We aren't practiced at supporting grieving people. We
avoid them, and we avoid mentioning the person they lost.
We're afraid to make someone sad with their memory. But
all of that actually makes grieving harder and lonelier. And
when you're.
Speaker 4 (31:04):
Talking about social determinants of health, we know loneliness is
a greater risk factor for poor health outcomes than commonly
recognized one. The Surgeon General made that announcement with the
data showing that loneliness is more risky to the health
than smoking, dideites, than obesity. And yet it's the core
emotional experience of people after catastrophic loss. So is it
(31:28):
the loneliness that's killing people or is it the.
Speaker 1 (31:31):
Grees KATCHIATORI points out that diagnoses aren't free from politics,
even though they're often written as if they exist outside
of social context. So even though the PGD diagnosis was
created in a society where loneliness and isolation are pretty common,
it doesn't really factor that in.
Speaker 4 (31:47):
I conducted one sety where we ask people how satisfied
were you with the level of grief support that you
received from these various groups? We act about therapists and
medical provide writers, psychiatrists and medical doctors, obgyns. We asked
about neighbor's family friends. We asked about all of these
(32:08):
different groups. Okay, how satisfied were you? The highest rated
human group satisfaction was sixty seven percent, and it was
support groups. People wanted to connect with others who were
like them, and most all the other groups ranked at
about fifty percent are below talkable. Social workers, for example,
ranked at thirty two percent, which is really grid. But
(32:32):
animals ranked eighty nine percent satisfaction.
Speaker 1 (32:36):
So what does that tell you?
Speaker 4 (32:37):
It tells you we all need a rescue animal number one.
But it also tells you that when it comes to
good grief support, be like a dog's just sit and stay.
Don't judge, don't rush when people are crying, don't avert
your gaze. Don't take your best friend out for a
drink when she saed because her son died of chanther.
Just it with her, and poor of her, photographed with her,
(32:58):
and remember. And the problem is we don't have enough
relationships like that, because that is what helps greeting people
their community, their local community. If people are educated and
if people have the tool that they need to support
greeting people, they can do it, can come together in
(33:18):
local communities and really help people.
Speaker 1 (33:20):
And in that way, learning to face grief our own
and someone else's is just part of being a more
empathic human.
Speaker 4 (33:27):
I'm passionate, obviously, and I'm passionate because I lived it
thirty years ago. My life changed and I would never
be the same again.
Speaker 1 (33:48):
Tina did meet with the psychiatrist for her grief. She
told him that she wanted to feel less dis less anxious.
She wanted to be able to go to work, spend
time with her family, with her partner. The psychiatrist asked
her about her medical history, whether she has any allergies,
and at the end of their first meeting, he prescribed
her an antidepressant.
Speaker 3 (34:07):
So I was on lexaprel and then I switched to
well butrin because lexapro I just felt too many side effects.
Speaker 1 (34:18):
Tina did not meet the criteria for complex grief disorder,
and she doesn't remember receiving an official diagnosis, but she
does remember that she felt helpless and out of control.
She wasn't eating, She wasn't sleeping. She was stuck in
a stressed response for months. The death of her dad
was more than she could handle on her own, and
she needed support. The way she put it is, she
(34:39):
needed crisis management. And taking antidepressants gave Tina a sense
of relief because treating her depression made room for the
other feelings, the things she wanted to feel. It made
enough room for her grief.
Speaker 3 (34:53):
So it was good to get to a place where
I can just be open and on its like, I
am going through this, I am grieving, but I'm also
still me.
Speaker 1 (35:06):
And you didn't. You didn't lose access to your grief
or your grieving process. The medication helped you to be
able to take care of yourself. It didn't necessarily like
numb your feelings through the grief, which I think is important.
Speaker 3 (35:18):
Oh yeah, yeah. The way I see it is the
medication helps bring you to your natural baseline, so then
you can actually go ahead and try whatever therapeutic techniques
they're throwing at you, because without it, like I wasn't
in a proper place to be doing those things.
Speaker 1 (35:40):
To like receive what the CVT therapist was offering.
Speaker 3 (35:43):
Yeah, exactly, I think I'm much better now. I'm still
taking antidepressants because I still feel like it's a benefit
for me. Maybe it's something I'll come off of in
the future, but for now it's doing the trick. And
I've just been doing a lot of journaling, exercise, meditation,
(36:05):
all the good stuff that I just was not ready
to do early on. I think the biggest thing was
getting to a point where I could just accept myself
and accept that I was grieving, and that grieving, no
matter what you do or how you decide to express it,
it's going to be messy. And of course you don't
(36:27):
want to be in pain. Of course you want to
feel better, but at the same time, because they're gone,
the only real connection that you have to your loved
one anymore is the grief, and in a way, this
is like the last way I'll ever be able to
express some sort of love or affection towards them, And
(36:48):
I just wish it was reframed in that way that
it's okay to grieve, but you can still take care
of yourself, and you could be grieving, but you could
also still be living.
Speaker 2 (37:13):
If someone has died and they are open to it,
washing and shrouting a body is really important to me.
It's a very very common ritual for me to practice
with people. It's not what a funeral director would do,
or it's not what a doctor would do. I have
a really beautiful clay bowl and that's what I use
(37:36):
for body washing. If it's your thing, you can put
some herbs in there. People are really specific about what
they want, sunflower petals and will a lee rose petals
in a lavender camomeal, mugwort, pe and e petals, and
at that point, with warm water in the bowl, we
just gently washed the body. Dying is really hard and
(37:58):
a lot of times people aren't that mobile at the end.
So saliva pools and spaces and the sticky from medical
tape and so we can remove all that, remove medical gunk.
The shrouds that we use are just to cream linen,
and so we will lay someone on that linen and
(38:19):
decorate the shroud with any notes or letters that people wanted,
anything that the person wanted with them, and we wrap
them up and wrap them from their feet up. It's
an opportunity to metabolize some of your grief, to honor
the grief, really think about that person and thank them
(38:42):
for their life. Time slows down a little bit. It's
not okay, let's get back to work. Let's do this
and move slowly through it and have an opportunity to
be It was really a long explaination.
Speaker 1 (39:07):
No, that was really perfect.
Speaker 3 (39:09):
This sounds so lovely.
Speaker 1 (39:09):
I wish I really wish we could have done that.
Speaker 2 (39:11):
I wish you could have too.
Speaker 1 (39:24):
Basket Case is a production of molten Heart and iHeart Podcasts.
This series was created and is executive produced by Jasmine J. T.
Green and it is hosted, produced, and sound designed by
me NK Nicole Kelly. Special thanks to Tina Oshawna Williams
and Joanne Cacier Torre production support from Siona Petros and
(39:45):
Amani Winner. Sonic elements provided by Chad Corey Adrian Lily
as our mixed engineer. Our theme is blue and orange
by Command Jasmine. Our show art was created by Sinay Rolson,
factchecking by Serena Solyn Lee. Google services provided by Rowan
Marin and File. Our executive producer from iHeart Podcasts is
Lindsay Hoffman.
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