January 29, 2024 • 42 mins
The Real Retirement Show, hosted by Yasmin and Kathleen, explores caregiving complexities during the aging phase of life. The hosts delve into the various challenges of being a caregiver to aging parents or family members, emphasizing the importance of self-care and open communication. In this episode, they interview Dr. Delia Chiaramonte, an integrative palliative medicine physician and author of 'Coping Courageously'. Dr. Chiaramonte shares strategies to support a loved one's illness without losing oneself, including how to manage caregiver burnout, navigate the healthcare system, and approach difficult conversations. She offers valuable insights on 'toxic positivity' and stresses the importance of acknowledging feelings of suffering and finding gratitude in challenging situations.
00:00 Introduction: The Challenges of Caregiving
00:46 Welcome to The Real Retirement Show
01:29 Introducing Dr. Delia Chiaramonte: Expert in Palliative Care
02:29 Discussing Dr. Chiaramonte's Book: Coping Courageously
03:19 Understanding Palliative Care: A Misconception
04:36 The Impact of Serious Illness on Families
04:51 Personal Experiences with End of Life Care
05:39 The Importance of Open Conversations about Illness
07:12 Navigating the Healthcare System: A Challenge
08:17 The Struggle of Communication within Families
10:28 The Power of Presence in Suffering
15:15 The Role of Acceptance and Control in Caregiving
15:46 The Importance of Being Present to Suffering
18:58 The Struggle of Control in Caregiving
21:44 Understanding the Importance of Decision-Making Autonomy
23:03 Dealing with Anger and Emotional Outbursts
25:10 Managing Frustration and Resentment as a Caregiver
36:11 Navigating the Healthcare System
39:58 Closing Thoughts and Reflections
Learn more about Dr. Chiaramonte and her book: http://www.copingcourageously.com
Retirement Readiness Assessment: www.retirescores.com/ready
Retirement Well-being Assessment: www.retirescores.com
Real Retirement Video Podcast: Real Retirement - YouTube
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Yasmin Nguyen (00:00):
Are you taking care of an aging parent or
family member?
As you approach the later yearsin life, chances are you or
someone you love may beexperiencing a health challenge
or facing a serious illness.
Navigating the journey of beinga caregiver can often lead to
feelings like overwhelm,frustration, fear, sadness,
(00:22):
guilt, anger, exhaustion andloneliness.
How do we take care of ourloved ones when we are barely
taking care of ourselves?
The reality is that many of useither avoid having deep, open
conversations about this journey, carry everything on our
shoulders or simply don't knowhow to deal with the challenges.
(00:43):
Welcome to the Real RetirementShow.
My name is Yasmin and I'mKathleen.
In this show, we delve into themultifaceted world of retirement
beyond the finances.
It isn't your typicalretirement discussion.
It's a vibrant journey intowhat retirement truly means in
today's world.
(01:04):
We bring you real stories fromreal retirees and experts
discussing real challengessurprises, joys, heartaches and
the myriad of emotions that comewith retirement.
From addressing family dynamicsto mental and physical health,
to finding purpose.
We tackle the issues that trulymatter to retirees and those
(01:27):
thinking about retirement.
In today's episode, our specialguest, Dr Delia Caramante, will
share specific strategies andtips to care for a loved one's
illness without losing ourselves.
Dr Caramante is an integrativepalliative medicine physician.
She is the founder of theIntegrative Palliative Institute
(01:48):
and host of the IntegrativePalliative Podcast.
She is board certified infamily medicine and palliative
medicine, certified by theAmerican Board of Integrative
Holistic Medicine.
She is an adjunct assistantprofessor at the University of
Maryland, where she teaches bothpalliative care and integrative
(02:08):
medicine.
Dr Caramante has been voted atop doctor by her position peers
and has published textbookchapters in the fields of
integrative and palliativemedicine.
She is the author of the bookCoping Courageously a
heart-centered guide fornavigating a loved one's illness
without losing yourself.
(02:29):
Let's join our conversationwith Dr Caramante.
Kathleen Mundy (02:34):
I had an opportunity yesterday to
immediately download your bookand committed to making sure
that I had finished the bookbefore this interview.
It highlights so many thingsthat so many people need to live
, jump in and embrace.
One very impressed.
Wow, the book is amazing, I'mtelling you.
(02:55):
I couldn't put it down.
In fact, I fell asleep with itin my hand.
I read it all evening.
Then I said, oh my gosh, okay,I'm going to go to bed, I'll
read another chapter too.
I'll finish it while I'm.
That didn't happen, it wasn'tboring, it was just a late night
.
So it's amazing, it's profound,it's powerful.
Dr. Delia Chiaramonte (03:15):
Well, thank you so much.
Thank you for reading it, and Iappreciate those kind words
very much.
Kathleen Mundy (03:19):
I want you just to give us a little bit of an
overview of what happens whenend of life becomes a reality
for many people, and thedifferences that they have in
our healthcare system, theoptions that they have.
Dr. Delia Chiaramonte (03:33):
I think one of the big misconceptions,
to start with, is around thewhole term palliative care.
People, even other physicians,often think that palliative care
means end of life care, but ittruly does not.
End of life care is a littlepart of palliative care, but
palliative care just means thecare, full person care of
(03:56):
families facing serious illnesswith a focus on reducing
suffering, reducing physicalsuffering, reducing emotional
suffering.
And a serious illness issomething like cancer.
If you have cancer and you'retrying to be cured or you're
trying to have your lifemarkedly prolonged, but you're
(04:17):
nauseous from chemo, you'retired from chemo, you're anxious
, you're depressed, you'rehaving stress, talking to your
family, your family is a mess.
All of that is suffering.
Palliative care is appropriatein that space, even if the
person is hoping to markedlyprolong their life.
It's really about seriousillness, reducing suffering.
(04:37):
The other thing that I think isso important about palliative
care is that it includes as theunit of care, the whole family,
recognizing that if there'ssomething serious going on, it's
not just about the patient,it's about the whole unit.
Kathleen Mundy (04:51):
I experienced this when my father became ill.
This was some 20 odd years ago,which is, in fact, why I said I
wish I did this book then.
But I will tell you, theadvantage that I had during that
process was the fact that I'man only child, so I didn't have
all of that disruptive emotionalbaggage that comes, as you've
described it so eloquently, withthe turmoil that can exist when
(05:16):
family members don't have acontrol point.
I could relate so much to whatyou outlined in your book.
Dr. Delia Chiaramonte (05:22):
Yeah, there's no question that
families can break apart justwhen it's most important to be
together.
That's actually why I calledthe book Coping Pharegiously,
because I think it takes braverycourage to be open, to looking
at these things and talking withyour family and not just being
in a hole and pretending maybeit'll just go if we don't think
(05:44):
about it.
Yasmin Nguyen (05:46):
And certainly when we have these experiences
in our life, especially whenwe've got loved ones that we are
caring for, that are going onthis journey, and we're joining
them on this journey.
So many of us don't necessarilyhave the roadmap, the training,
the skills to navigate it, andwhat you have shared with us
through your book, through yourwisdom, is so important,
(06:09):
especially during this time,this chapter of our lives, when
we do have these healthchallenges that do come up.
And, dillie, I'm curious forthose that are either going
through it or caring for others,that are navigating various
different illnesses.
What are they facing?
What are some of the thingsthat they're struggling with as
this comes up?
Dr. Delia Chiaramonte (06:30):
Yeah, you're so right, because none of
us have a roadmap, becauseusually we haven't been here
before, and so not only do wenot have a roadmap, but no one's
ever really talked about it forour whole life, because it's
kind of the last thing that wedon't talk about.
We can say cancer now, we cansay pregnancy once, a part of
time, that wasn't a thing we cansay erection.
We can say menstruation right,we can say all those things, but
(06:53):
don't talk about death.
People have this kind ofmagical thinking sometimes, like
if I say death, someone's goingto die, but that's of course
not how it works.
It's not how it works, but wedon't have experience in our
life with how to deal with it.
So the things that often come upare a few.
One is the most basic andpractical, which is how do you
(07:16):
even manage the medical system?
Right?
The medical system is chaos.
You wait seven hours in theemergency room.
You don't even know who's thedoctor anyway.
Who's there like who's that guy?
Then there's another guy, thenthere's another person comes in.
Who are all these people andwho am I supposed to listen to
and who's in charge?
People say the physicians orother clinicians will say words
(07:38):
and maybe the family doesn'ttotally understand what they're
trying to say.
And sometimes even physicianswill couch hard things because
we're afraid to say it.
The physician might saysomething well, things aren't
going that well.
What does that mean?
It means that the family justmakes up in their head what that
means.
Who knows what that could mean.
(07:59):
Sometimes a physician says that, and what they mean is it's
time for hospice, that nothingis working, the end is near.
But the family may not hear itthat way.
So there's tons ofmiscommunication just in the
healthcare system.
That's one piece.
That's hard.
Then there are some other thingsthat are kind of more personal
that are hard.
One is that because we don'thave experience talking about
(08:22):
progressive illness and death,the family members often will go
to their own corners and nottalk to each other about it.
And if one person even says,what will we do if the chemo
doesn't work?
Sometimes the family membersjump on them and say don't say
that.
You kids, you have to bepositive, we're not going to
talk like that around here.
And that makes the personretreat.
(08:44):
Right, they just got the whoop.
That's not okay for me to sayso now if they were worrying
about their own death.
Now they're worrying all bythemselves, maybe in a room
filled with family members, andhaving to carry that all alone
because the family wasn'tcomfortable allowing that
conversation into the room.
So that is the part that breaksmy heart, because just at the
(09:08):
time when maybe, time is gettingshorter and connection with the
family is most important,sometimes people kind of break
apart and become lonely withintheir family, and that is
heartbreaking.
Kathleen Mundy (09:21):
I wonder if I'm unique in this.
I remember a time when my dadwas going through this end of
life and I asked him what's itlike for you?
Yasmin Nguyen (09:34):
I'm so sorry.
Kathleen Mundy (09:41):
Sorry, don't be sorry.
He said something so profound.
He said to me it's like beingencased in cement.
I got it.
I really that changed.
Dr. Delia Chiaramonte (10:02):
So sorry, please don't be sorry.
This is exactly what we shouldbe doing, which is feel the real
feelings when things are hard.
Kathleen Mundy (10:11):
Well, it changed our conversations from that
point forward because all of asudden I really understood he
was feeling no one was trying tointerpret.
Yasmin Nguyen (10:25):
I know it was raw , it was real.
Kathleen Mundy (10:29):
Yeah, I think that, oh, pardon me, sorry,
please I think that we shouldallow ourselves the opportunity
to ask these hard questions tothem so we have an understanding
.
Wow, oh, please, it's OK.
(10:52):
Yeah, I guess I'm not over it.
Dr. Delia Chiaramonte (10:55):
I'm so sorry for your loss.
Losing a parent, no matter howlong it's been, is just a
life-changing experience.
Kathleen Mundy (11:02):
In your book you mentioned how it's important to
accept things and how somepeople don't do it and they
don't allow them to speak abouttheir oncoming death, and that's
what spoke to me.
I was grateful for anythingduring those months.
I was grateful that I actuallyhad the courage to ask them that
(11:24):
question.
Dr. Delia Chiaramonte (11:25):
I'm so proud of you that you did that.
Yasmin Nguyen (11:28):
Delia, the work that you have shared is so
powerful.
It touches us to our core, someplaces that women have known
has healed, and you're reallyhelping us share and express the
real experiences in our lives.
And that's what thisconversation, this show, is
about is really tapping into therealities with love, with
(11:51):
kindness, with generosity, withwisdom, so that we can all
experience a better placetogether.
Dr. Delia Chiaramont (11:59):
Absolutely , and I'm really touched by that
story that you told us,kathleen, because you allowed
him to share something thatbefore he may not have been
sharing, but he was certainlyfeeling it and he was feeling it
all alone, and anytime we'regoing through something tough,
it's better to share it withsomebody who cares about us than
(12:19):
to go through it all alone.
You have such a great exampleof how having that connected
moment even though you couldn'tmake it, not feel that way to
him, but just having thatconnected moment was so powerful
for you and I have no doubt itwas powerful for him.
And that's exactly the pointhonestly, that's why I wrote
this book is for exactly whatyou just described.
(12:41):
Because if we're afraid to askthose questions, how are you
doing?
What does it feel like?
Are you afraid?
What can I do for you?
The thing I think is importantto say is we don't have to know
how to do it.
Well, there's no right words.
You can just come in someone'spresence and say I literally
(13:02):
don't know what to say.
I have no idea what to say.
I wish I could fix this, but Iknow I can't and I don't know
what to say.
I just want you to know that Ilove you and I'm here.
That's all I've got.
That's amazing, right?
You don't have to have theperfect words.
Yasmin Nguyen (13:15):
Right Dilya.
I'm curious, aside from couragethat Kathleen exhibited, to ask
for those who may not be inthat place.
Where they have that courage,how do you approach or how do
you ask those questions, or howdo you initiate a conversation
that feels so scary?
Dr. Delia Chiaramonte (13:38):
No one has to have the courage first.
Really, it's an act as if kindof thing.
You can be shaky and crying anda mess or have no idea what
you're about to say, but justbring your wholehearted open
self to the other person'spresence.
And you can even do it withsilence.
If you really come to someone'sbedside and you bring your open
(14:00):
self and you allow tears toform in your eyes.
If that's what you're feelingand you hold their hand and you
squeeze it, that counts.
You don't even need words.
Kathleen Mundy (14:09):
When I was reading your book, that became
almost a mantra.
It's silence is a language thatwe don't often use, and I think
that was very profound, thatyou mentioned that several times
throughout, and you'reabsolutely right.
Dr. Delia Chiaramonte (14:26):
Thank you for highlighting that.
It is so important.
And what I find that sometimespeople do instead is things they
do things like well, I'm goingto go clean the kitchen, dad and
I put all the things away andI'm now I'm going to go to the
store and I'll make us somedinner and, yes, everybody has
to eat.
But you know you can order.
Like, don't do that.
How about just sit quietly bytheir bedside or read them the
(14:48):
newspaper or watch a movietogether, even if they're
sleeping through half of it?
We sometimes do when we'reanxious because it feels safer,
like I know how I can dosomething.
I could do the laundry, I'll godo the laundry, but we really
want to not do that, if possible, and just leave some of that
and just be present with eitherthe person who's ill or with
(15:11):
another family member, just bepresent in the scary stuff.
And that's really theacceptance part, I think, is not
that you accept that someone'sdying, as though you like it,
and of course you don't like it,but just things are what they
are, right and pretending isworse.
When we're pretending, we can'tbe real and part of what we
(15:32):
want to do and we have limitedtime with someone is to be in
their presence and to be real.
Yasmin Nguyen (15:38):
Speaking of presence during your book launch
, you had talked about the 10different experiences that I
think you went through.
I'm curious if you would sharewhat were some of those other
ones and expand a little bitmore on what do you mean by
being present to the suffering?
Dr. Delia Chiaramonte (15:55):
Sure.
Let me just share briefly thebackground to that conversation.
So one of my children had aninjury, a pretty significant
injury, when she was a middleschooler and there was a very
long recovery and there weretimes when we didn't know if it
was ultimately going to be okayand there was a ton of physical
(16:19):
suffering and emotionalsuffering involved in that.
And so the first part that washard for us and I found the same
things that were hard for meand my family were the same
things I find in my patients andtheir families, and the first
one was just to be in thepresence of someone else who's
suffering.
So when someone is suffering,it feels easier to go downstairs
(16:42):
and do the laundry than to bewith them.
It's hard to be with someonethat you care about who's
suffering when you can't fix it.
If you could fix it it would beeasy, but if you can't fix it,
it's hard in so many ways.
It's hard because you love them, it's hard because you feel
that you get guilty or broken,sort of that.
(17:04):
You can't make it go away.
And it's physically hard.
Even the way human beings are,we often take on what other
people are feeling and you mayfeel headache or tightness in
your chest or tense in your body, when you see someone else
suffering and it's hard to stay,it's hard to be in their
presence, but also it'simportant because they feel it
(17:25):
anyway.
They can't run away from it,and so there's really like
they're suffering alone orthey're suffering with company,
and it is almost always betterto have somebody who cares about
you, who at least sees you, andit's important to be seen.
And so the image that I findhelpful, that was helpful for me
(17:45):
and is helpful for the patientsand families that I've cared
for, is to walk beside someone.
So when we feel like I have tofix this and I can't, it's
unbearable.
But when we see like you arewalking up a very tall hill here
, I can't make the hill besmaller, but I can walk beside
you and then at least you're notwalking up that hill yourself.
Kathleen Mundy (18:09):
I think the one of the things that sometimes
families try and do is justcontrol the situation.
Yes, and when you take thattime to be present in that
suffering, you have to acceptthat you can't control it.
It is an uncontrollablecircumstance and for a
(18:30):
control-free it's reallydifficult.
I wouldn't have the skill setto do so, and I think that one
of the things that you mentionedin your book is that some of
the practices that you're goingto talk about of course I've
interrupted you twice now, butof the 10 points you mentioned
how often you need to practicethese so that you become really
(18:52):
good at it, so that you canutilize it when it's necessary.
Dr. Delia Chiaramonte (18:57):
Correct, and I do want to speak, since
you mentioned it, about controlfor a moment.
What people tend to do becauseit makes them feel better,
they're not being bad people,they're just trying to survive a
difficult situation is it feelsgood to control something, even
if the something is kind ofirrelevant.
So that's what makes people godownstairs to do the dishes when
(19:18):
their loved one is suffering.
I can't fix this, but Icouldn't do the dishes.
But we have to check ourselvesfor that and make sure we're not
trying to control somethingthat is irrelevant to the story
and instead let that go and bepresent, even if it doesn't feel
like we're doing anything.
But we are doing somethingbecause what we're doing is
presence with another person andthat counts.
(19:40):
So I do think that's animportant thing to look at,
because people often thinkthey're doing a good job by all
the controlling that they'redoing, and this comes up very
often with aging parents.
So let's say, aging parents whoare still cognitively intact, so
they should be making their owndecisions, right, boy?
The kids want to controleverything that their aging
(20:01):
parents are doing.
You need to stop eatingSnickers bars, and you have to
exercise and you have to bebetter about writing down your
medicines and you have to go tothe day program, you have to do
all these things and they cancreate conflict with their
parent just when they're notgoing to have that much time
left with their parent.
And this idea of people who arecognitively intact are allowed
(20:25):
to make their own bad decisionsis really important, right?
Yeah, sure, maybe they shouldeat more vegetables, but
probably you should have whenyou were a teenager too, and you
didn't.
And people are allowed to maketheir own bad decisions, so we
should prioritize therelationship.
Yasmin Nguyen (20:40):
Oh, that really hits home.
I found myself Mom, you need tostop eating that sugar stuff,
Dad, we need it.
And then of course, I feel badafter I've kind of shamed or
judged them.
I feel like the roles were kindof reversed, like back in the
day they were telling me thisstuff and now it's my turn.
But now I realize I have totake a moment and pause and
(21:03):
catch myself and notice that, oh, am I more committed to being
right or am I more committed tobe loving?
Kathleen Mundy (21:10):
There you go, that's true.
Yasmin Nguyen (21:12):
And it's that moment of pause that, okay, it
doesn't need to be this way, thething doesn't need to be over
here, it's okay, I'll just moveit later.
I don't need to yell at themfor it or anything like that.
Dr. Delia Chiaramonte (21:25):
Good for you for having that realization.
It's really important.
It's hard, it's hard but it'simportant.
But you can say your thing onceor twice, maybe three times max
.
Maybe they don't know sugar isbad for you, whatever.
Just in pace you can say itonce or twice, but if you've
said it a few times and they'renot listening to you, you know,
stop.
They're allowed to make adecision that you think is wrong
(21:48):
, Even if you are legitimatelycorrect.
It would be better to do ityour way.
They're allowed to make adecision that's different than
what you think and what mattersmore?
The relationship, or themeating more vegetables, right?
So if you could say well,before they died, they ate a lot
of vegetables.
Kathleen Mundy (22:05):
We hate each other now, but they sure ate
vegetables, and I want to justask what does it matter at that
point in their life if they eatvegetables or candy bars every
day?
It's not life changing.
Dr. Delia Chiaramonte (22:16):
But it is the urge we were talking about
before to control somethingcontrollable when you can't
control the uncontrollable.
So my parents are aging andthat breaks my heart and I'm not
going to have them forever andoh my gosh, that's terrifying.
So I'll focus on this otherthing instead.
But really, the acceptance partis wow, life is finite and for
(22:39):
my parents it is potentiallyparticularly finite.
Oh, we never know that, butpotentially, and that's hard.
Let me be with that.
Instead of trying to controlother things to make myself feel
better in the moment, let methink well, wow, how, how, what
do we need to repair with eachother?
How can we just spend some funtime together?
What would be a new experiencethat we could have together?
Focus on the relationship,prioritize the relationship.
Yasmin Nguyen (23:03):
Speaking of control, there's a lot of
emotions that go with that, andone of the ones that that
typically accompany controllingis anger, and I remember you
mentioning something about beingthe brunt of their anger.
Can you talk a little bit aboutthat?
Dr. Delia Chiaramonte (23:17):
That's a great question.
So when someone is suffering,they often feel angry because
their life got messed up.
That was the case for mydaughter.
But people who have cancerthat's not fixable people whose
life didn't turn out how theywanted even if they're, they
have normal aging but they'relooking back at their life and
(23:37):
they didn't do the things theywish they done or they missed
opportunities that they can'tgive back now.
People feel angry sometimes andthat's legitimate that they
feel angry.
But they also sometimes sharethat anger with the people in
their life and that can be hard.
Now it's better if we can see itkind of from the up high, like,
(24:00):
wow, that person, my loved one,is feeling legitimately angry
about this thing that ishappening to them.
They're sharing it with mebecause they feel safe with me,
but that's hard for me.
So, seeing it in that way, youcan make a plan, like sometimes
you can set boundaries and say Ineed you to stop yelling at me,
please.
I hear how much you'resuffering, I hear that you are
so suffering, but it hurts mewhen you yell.
(24:21):
So if you could yell less, thatwould be better.
You can do that.
You could just find other waysto fill up your cup to
experience for yourself like,wow, that was a hard interaction
.
I feel kind of stressed outabout it.
I'm not going to yell back atmy loved one because that's only
going to fracture arelationship.
It won't help anything.
But I've been kind of wounded alittle bit.
So let me go for a run, let metake a shower, let me call my
(24:45):
therapist, let me talk to afriend, let me write in my
journal, let me go cook, let mego create something, whatever it
is that is in our own fill up,our cup plan.
So I think not being reactiveand seeing the big picture makes
it much easier to tolerate, asopposed to if you're just in it
and they yell at you and youyell back.
Then your relationship isfractured again and nothing good
(25:07):
came to that.
Kathleen Mundy (25:09):
You know, this brings up a question that I have
now Is that, if you're acaregiver, how can you deal with
the frustration and theresentment when you're trying so
hard and yet it seems sometimeslike they don't appreciate what
you're doing or the sacrificesthat you might be making?
How would you advise acaregiver to deal with something
(25:30):
like that?
Dr. Delia Chiaramonte (25:31):
It's such a great question.
That happens all the time.
So in the fantasy world wewould be loving and we would
show up with our presence, andthen the other people would be
so appreciative and they wouldtell us how wonderful we are in
a relationship with each other.
Sometimes that happens, butoften it doesn't happen quite
that way, because both peopleare suffering.
Plus, we bring our ownpersonalities to our
(25:54):
circumstance and there may havebeen conflict between the people
before.
It may be that the person, thepatient themselves, is so angry
that they can't feel grateful.
So the first thing I would sayis we have to be realistic about
what we can offer withoutdepleting ourselves too much,
and that it's okay to do less.
(26:16):
And this may sound harsh, butthat's the way it is.
So we shouldn't give so muchthat we're hanging on by our
fingernails, dusted, depleted,sick, resentful People do that,
but that's not the best approach.
In the book there's a chaptercalled you Song Creating an
Imperfect Plan which counts,even if there's just one child.
(26:39):
The idea that it's true, it'snot going to be perfect, this
fantasy, if I'll just give upeverything and care for my
parent and then they'll be soloving.
Yeah, it sometimes doesn't workthat way at all.
So the idea really in theImperfect Plan is let me
self-reflect what can I dowithout feeling completely
depleted?
So maybe I can come over twicea week, but if I come over seven
(27:02):
days a week I'm going to loseit.
So you don't do seven days aweek.
So the first thing is what can Ido without feeling totally
depleted?
Who can I get to help me?
Who else can help me?
And the obvious people if thereare siblings or other immediate
family.
But how about the next levelout?
How about friends?
How about neighbors?
(27:22):
How about the next level out?
How about people at religiousorganizations or in your book
club or at work?
And how can people help?
So sometimes people can help byshowing up and actually doing
things.
Sometimes they help by sendingfood, but sometimes they can
help with money.
Some people can help with money.
They might be like I'm notcoming over and I'm not wiping
(27:43):
any butts, but I'd pay for somethings.
And they might pay for somehome health care, right, so that
you can have a break.
So I really think the centralcore in your question is to only
give what you can give and thenbe creative about getting help
for all the other stuff.
Kathleen Mundy (28:05):
That's a really good point.
I know that oftentimes you feelobligated to do absolutely
everything, but the point thatyou make that some people who
can't spend time might have theresource to get a cleaning help
or something or have someonecome in and do the laundry I
think that's really, reallyrelevant because it gives you an
(28:25):
opportunity to step back alittle bit, and in your book you
mentioned that you knowremoving yourself and kind of
stepping back and letting go alittle bit.
Dr. Delia Chiaramonte (28:34):
Yep, right, exactly.
And so that concept of I feelobligated.
If you're running on obligationand you're pushing yourself so
much that you're depleted,you're not a very good caregiver
anymore and your personprobably is not feeling better
that you're there, becauseyou're probably crabby and
annoyed and they might feelafraid to ask for anything.
(28:56):
They will feel your negativeenergy.
So it's much better to givewhat you can give and still keep
positive energy and get helpfor the rest of the stuff than
to be like, no, it's fine, I'lldo it, and you show up with that
energy.
Yasmin Nguyen (29:09):
That's actually not great, even for the person
you're trying to help.
That's such an importantdistinction.
Delia, the energy of obligationand a conversation with mentors
in the past.
They've helped me notice thedifference between when you make
a decision to do something outof obligation, rather out of
(29:31):
excitement or love, what bounceback is resentment.
Dr. Delia Chiaramonte (29:36):
Yep, they will feel that, and I think
that avoiding regret is a prettyimportant piece of this whole
thing, because when you're in ityou can be like, fine, I'm here
, I'm annoyed, and they can tellI'm annoyed, but whatever, at
least I'm here.
But then at some point theywill be gone and you don't want
to be stuck with that thinkinggosh, the whole last year I was
(29:58):
just annoyed and that's not howI want to end my relationship
with this person.
So the other piece to this, Ithink, is that when we ourselves
are depleted, hard things areharder.
So part of the answer to yourquestion that's maybe one step
back is that we actually reallyneed to work on filling up our
(30:18):
own cup so that we are as filledup as we can be, because we
probably can help more than, andwe can help in a more loving
attached way than that.
If we're just like I'm workinglike a dog, I'm volunteering,
I'm doing these extra things,I'm cleaning my house myself,
I'm making dinners every day,I'm driving the kids all by
(30:40):
myself to all the things and I'mjust white, that person trying
to provide caregiving is reallyhampered, whereas if they could
do some things to lighten theirown load, like.
Maybe someone else can drive mykids to some other things and
maybe I can order in healthyfood sometimes and maybe I can
get somebody else to clean thehouse now and then.
Maybe I can lower my standards alittle bit and just let it be a
(31:01):
little messier, for right nowit's kind of a crisis time.
Maybe I can work a little bitless at work or do a day at home
, I can ask anyway.
So what are the ways that wecan reduce the things that empty
our cup and add more thingsthat fill up our cup?
Maybe I really need an hour ortwo alone every weekend.
(31:21):
I can pick the place in myhouse and put a note on the door
and say nobody bother me unlessthere's blood.
This is my time.
Maybe I need to join a runningclub, or maybe I need to have a
book club, or maybe I need to goget a massage every other week.
What are the things that I needto fill up my cup so that I'm
in a better space and from there, the person who is ill will get
(31:44):
the very best of me.
Kathleen Mundy (31:47):
I was really inspired by your concept and how
you deal with what you calltoxic positivity.
That struck me as a concept Inever, ever thought about before
.
But I know many people go intothis positivity lane and almost
push away reality, thinking thatthey're doing the right thing.
(32:08):
And just explain your concept alittle bit for us, sure.
Dr. Delia Chiaramonte (32:12):
Thank you for allowing me to speak on
this because I think it's reallyimportant.
Actually, people get confusedabout gratitude and toxic
positivity.
So gratitude meaning lookingfor the things in your life for
which you are grateful isgenerally a healthy
psychological thing to do.
It reduces anxiety, it reducespain, improves sleep, depression
(32:34):
et cetera.
But toxic positivity is reallybrutal.
The concept there iswhitewashing all the bad things
away.
No, it's fine, everything'sgreat, it's going to be fine.
So if someone says, gosh, thedoctor said the chemo might not
work, a loved one this happensall the time will jump in and
say don't you say that?
(32:54):
That's not true.
We have to be positive.
If you're not positive, it'snot going to work and all that
does is shut down the person whowas having some realistic
concerns about how things aregoing to go.
So toxic positivity is likewhite paint over the moldy wall
it looks good for a second andyou might think that it's good,
(33:15):
but it is covering up somedifficult stuff underneath and
it's not psychologically goodfor anybody.
So the trick that I like to usethat allows space for both the
hard parts and also the gratefulparts is this sentence of I
(33:37):
don't like or I hate, if youwant that.
I don't like blank, but at leastblank.
So I don't like that.
I have cancer, but at least myfamily lives in town.
I don't like that.
My headaches won't go away, butat least the snow stopped.
(33:58):
I don't like that.
My child's not doing well inschool, but at least we got this
great dog and it's brought themood up in the house.
They don't even have to berelated, so I don't like that.
I have to go get a mammogramtoday, but at least I had a
great breakfast.
The point is it makes space forthe thing I really don't like.
It doesn't say I don't hatecancer.
(34:22):
It allows space for it.
Hate that.
But then it just gives you thespace to turn your head of your
attention a little bit and saybut here's something I could
show, a moment of gratitude.
That's so powerful, dilya.
Yasmin Nguyen (34:37):
And the distinction with that particular
phrase is that you'reacknowledging what's there.
You're saying that, hey, hereit is, but I don't have to like
it.
But then I appreciate somethingelse.
It's not, like you said,whitewashing and saying no, no,
no, it's not there, I don't seeyou, I don't see you.
But it's just saying, hey, it'sthere and I'm focused on
(34:57):
something more positive, exactly.
Kathleen Mundy (35:00):
But this skill set could be used absolutely
every day, whether you're in acrisis or not.
Dr. Delia Chiaramonte (35:07):
It should be.
I do that all day long.
It changes the way you carryyourself through the day.
Any time I go gosh, whatever itnow it pops to my mind and most
of the time, most of the time,I'm able to say, yeah, I don't
like that thing, but at leastthis other thing, and it just
lightens the heavy a little bit.
It just reminds you that, yeah,that stinks, but look, there's
(35:30):
other stuff too, and it's awonderful psychological tool.
Here's what I love at the booklaunch party last week I shared
that, and since then people havebeen texting me their phrases
that they did that day, and itmakes me so happy.
It makes me think, oh, we allshould be doing this all the
time.
We should be texting ourfriends.
Oh, I don't like blank, but atleast blank.
Kathleen Mundy (35:49):
It's a great size I'm going to share with you
.
I used it immediately becauseit's knowing like crazy here and
I said I don't like cold, snowydays, but I get a chance to
look at the forest behind wherewe live.
Dr. Delia Chiaramonte (36:03):
So I love that I was able to use that.
Perfect, exactly perfect.
That's great Thanks for sharingthat.
Yasmin Nguyen (36:11):
Delia, you had mentioned earlier about
navigating some of the healthcare system and the challenges
that are out there, and,kathleen, in one of our
conversations we talked aboutsome of the delays that we
experience in getting news aboutvarious different diagnoses or
perhaps even being heard by ourprofessional caregivers too.
(36:33):
And so, deely, I'm just curiouswhat's your experience been
like and what are some thoughtsthat you have around navigating
some of those particularchallenges as a caregiver with
the health care system?
Dr. Delia Chiaramonte (36:46):
Yeah, boy , the health care system is kind
of a mess, I'm sorry to say,and so because of that, I would
say that being organized andvigilant and a really good
communicator, those are probablythe key things.
So, organized, I give anexample in the book of how you
might organize your medicalrecords, and actually on my
(37:08):
website too is something peoplecan download about how they
should set up their notebook.
This is important because youmight assume that if you go to
two doctors, that they both knowwhat medicines you're taking.
Or if the new guy changed yourmedicine, he told the old guy,
no, he didn't.
So nobody knows what you'retaking except you.
You go to a hospital, they'llpull up the medical record from
(37:28):
when you were there two yearsago.
They might write down thosemedicines as though those are
your current medicines and theymay not be your current medicine
.
So you as the patient andfamily are the source of truth,
and so you have to have anotebook that has all the stuff
and carry it around with you sothat the source of truth is with
you and you share it, so thatin terms of organization, I
(37:49):
think is really important.
Related maybe to that one iswrite down your questions before
you go into the office, becauseyou'll think you'll remember.
And then, as soon as you gointo the office you forget all
the questions, the doctorsrushing around, then they leave
and you go oh, we didn't askabout that thing.
So write down your questions,have them open and then write
down the answers.
And if you're not able to writedown the answer because you
don't totally understand, askagain so they totally understand
(38:10):
.
So organize all the informationfrom all your medical
experiences in one place.
Vigilance, unfortunately, isvery important.
There are tons of medicalerrors every year.
It's nobody's fault per se.
Doctors and nurses are doingthe best they can.
The system is chaotic.
It'll blame anybody, but it's afact there are errors.
(38:30):
So if I have a loved one who'sin the hospital, as much as
possible I would try to havesomebody there.
So that's an example of how youcould bring in other helpers.
You don't have to be thereevery minute.
Maybe there's a neighbor whocould come for a few hours, or
people from church or synagogueor your mosque could come for a
while.
Maybe someone from work couldcome for a while.
(38:51):
But as much as possible it'sgood to have somebody there and
watch what's happening.
So if they give pills andthere's a blue one, and there
wasn't a blue one there beforesay whoa, hang on one second,
what's that blue pill and whyare they taking it?
And if the nurse isn't sure,say wait, don't take that yet.
Go, please call the doctor andask them what that pill is for,
(39:14):
because there's a possibility itcould be for somebody else.
Kathleen Mundy (39:18):
You know I keep relating this story about the
experience I had with my father,but when he was hospitalized
for a few months actually nearthe end I had a notebook that I
asked people when if you visitLyle, would you please give me a
description of what you find?
It was a huge advantage and Iwould leave a note for the next
(39:39):
person who might be in it and itreally helped reduce my anxiety
and it was a nice threadthroughout his time that he was
with us.
Dr. Delia Chiaramonte (39:51):
That's a great example and a really
important thing to do.
Thank you for that.
Yasmin Nguyen (39:57):
That's so powerful.
Wow, delia.
We're so grateful that youbring such richness in
experience and experience andwisdom.
And for those interested inlearning more about Dr
Caramonte's work and her amazingbook, visit
wwwcopingcouragiouslycom.
We'll also include the links toher website, book and resources
(40:19):
in our show notes atwwwrealretirementshowcom.
Kathleen Mundy (40:25):
Well, you've opened my eyes to a lot of
things today and yesterday, andthat was the best 24 hours to
spend with the book.
Dr. Delia Chiaramonte (40:32):
Well, thank you so much.
Thank you for reading it, and Iappreciate those kind words
very much.
Yasmin Nguyen (40:36):
Thank you, Delia.
We're so blessed and gratefulthat you hear that your mission
is helping so many people, notonly within this retirement
conversation, but so many othersas well, and this is an
important topic that I think wejust don't have an opportunity
to really explore much, and thatyour book is a gift that allows
us to do so.
Kathleen Mundy (40:58):
Absolutely.
Yasmin Nguyen (40:59):
Kathleen, anything else?
Kathleen Mundy (41:00):
Well, this has been an emotional journey for me
.
For sure.
We are blessed to have someonelike you, who takes this journey
to help others, because it willbe life changing for them.
The memories that they willcreate, the legacy that they
will leave, will be somethingthat they can be incredibly
proud of, with your help.
(41:20):
I think the lessons we learnedfrom each other are lessons that
we absolutely hold as gold, andwhen we have like-minded people
that are open, open hearts,open mind, come together and
share those experiences thatactually will help someone else
in their journey is why I thinkpeople are put on this earth.
(41:41):
Just in closing, I just want tosay I have a 95-year-old
mother-in-law that I don't havea lot of experience dealing with
this up until I am now dealingwith it, and the information
that you provided really isgoing to give me insight into
how I can make the relationshipbetter and her experience here
better.
I'm looking forward to ourblossoming new relationship.
Yasmin Nguyen (42:06):
Thank you for taking the time to join us today
.
If you enjoyed this episode orfound it valuable, please
subscribe, follow and leave acomment or a view on your
favorite platform.
If you have friends, clients orloved ones who are retired or
thinking about retirement, weinvite you to share this show
with them.
Check out the show notes withlinks to resources mentioned in
(42:28):
this episode atrealretirementshowcom.
Remember, retirement is ajoyful journey we get to
experience together.
Join us next week for anotherreal retirement conversation.
Are you taking care of an aging parent or
family member?
As you approach the later yearsin life, chances are you or
someone you love may beexperiencing a health challenge
or facing a serious illness.
Navigating the journey of beinga caregiver can often lead to
feelings like overwhelm,frustration, fear, sadness,
(00:22):
guilt, anger, exhaustion andloneliness.
How do we take care of ourloved ones when we are barely
taking care of ourselves?
The reality is that many of useither avoid having deep, open
conversations about this journey, carry everything on our
shoulders or simply don't knowhow to deal with the challenges.
(00:43):
Welcome to the Real RetirementShow.
My name is Yasmin and I'mKathleen.
In this show, we delve into themultifaceted world of retirement
beyond the finances.
It isn't your typicalretirement discussion.
It's a vibrant journey intowhat retirement truly means in
today's world.
(01:04):
We bring you real stories fromreal retirees and experts
discussing real challengessurprises, joys, heartaches and
the myriad of emotions that comewith retirement.
From addressing family dynamicsto mental and physical health,
to finding purpose.
We tackle the issues that trulymatter to retirees and those
(01:27):
thinking about retirement.
In today's episode, our specialguest, Dr Delia Caramante, will
share specific strategies andtips to care for a loved one's
illness without losing ourselves.
Dr Caramante is an integrativepalliative medicine physician.
She is the founder of theIntegrative Palliative Institute
(01:48):
and host of the IntegrativePalliative Podcast.
She is board certified infamily medicine and palliative
medicine, certified by theAmerican Board of Integrative
Holistic Medicine.
She is an adjunct assistantprofessor at the University of
Maryland, where she teaches bothpalliative care and integrative
(02:08):
medicine.
Dr Caramante has been voted atop doctor by her position peers
and has published textbookchapters in the fields of
integrative and palliativemedicine.
She is the author of the bookCoping Courageously a
heart-centered guide fornavigating a loved one's illness
without losing yourself.
(02:29):
Let's join our conversationwith Dr Caramante.
Kathleen Mundy (02:34):
I had an opportunity yesterday to
immediately download your bookand committed to making sure
that I had finished the bookbefore this interview.
It highlights so many thingsthat so many people need to live
, jump in and embrace.
One very impressed.
Wow, the book is amazing, I'mtelling you.
(02:55):
I couldn't put it down.
In fact, I fell asleep with itin my hand.
I read it all evening.
Then I said, oh my gosh, okay,I'm going to go to bed, I'll
read another chapter too.
I'll finish it while I'm.
That didn't happen, it wasn'tboring, it was just a late night
.
So it's amazing, it's profound,it's powerful.
Dr. Delia Chiaramonte (03:15):
Well, thank you so much.
Thank you for reading it, and Iappreciate those kind words
very much.
Kathleen Mundy (03:19):
I want you just to give us a little bit of an
overview of what happens whenend of life becomes a reality
for many people, and thedifferences that they have in
our healthcare system, theoptions that they have.
Dr. Delia Chiaramonte (03:33):
I think one of the big misconceptions,
to start with, is around thewhole term palliative care.
People, even other physicians,often think that palliative care
means end of life care, but ittruly does not.
End of life care is a littlepart of palliative care, but
palliative care just means thecare, full person care of
(03:56):
families facing serious illnesswith a focus on reducing
suffering, reducing physicalsuffering, reducing emotional
suffering.
And a serious illness issomething like cancer.
If you have cancer and you'retrying to be cured or you're
trying to have your lifemarkedly prolonged, but you're
(04:17):
nauseous from chemo, you'retired from chemo, you're anxious
, you're depressed, you'rehaving stress, talking to your
family, your family is a mess.
All of that is suffering.
Palliative care is appropriatein that space, even if the
person is hoping to markedlyprolong their life.
It's really about seriousillness, reducing suffering.
(04:37):
The other thing that I think isso important about palliative
care is that it includes as theunit of care, the whole family,
recognizing that if there'ssomething serious going on, it's
not just about the patient,it's about the whole unit.
Kathleen Mundy (04:51):
I experienced this when my father became ill.
This was some 20 odd years ago,which is, in fact, why I said I
wish I did this book then.
But I will tell you, theadvantage that I had during that
process was the fact that I'man only child, so I didn't have
all of that disruptive emotionalbaggage that comes, as you've
described it so eloquently, withthe turmoil that can exist when
(05:16):
family members don't have acontrol point.
I could relate so much to whatyou outlined in your book.
Dr. Delia Chiaramonte (05:22):
Yeah, there's no question that
families can break apart justwhen it's most important to be
together.
That's actually why I calledthe book Coping Pharegiously,
because I think it takes braverycourage to be open, to looking
at these things and talking withyour family and not just being
in a hole and pretending maybeit'll just go if we don't think
(05:44):
about it.
Yasmin Nguyen (05:46):
And certainly when we have these experiences
in our life, especially whenwe've got loved ones that we are
caring for, that are going onthis journey, and we're joining
them on this journey.
So many of us don't necessarilyhave the roadmap, the training,
the skills to navigate it, andwhat you have shared with us
through your book, through yourwisdom, is so important,
(06:09):
especially during this time,this chapter of our lives, when
we do have these healthchallenges that do come up.
And, dillie, I'm curious forthose that are either going
through it or caring for others,that are navigating various
different illnesses.
What are they facing?
What are some of the thingsthat they're struggling with as
this comes up?
Dr. Delia Chiaramonte (06:30):
Yeah, you're so right, because none of
us have a roadmap, becauseusually we haven't been here
before, and so not only do wenot have a roadmap, but no one's
ever really talked about it forour whole life, because it's
kind of the last thing that wedon't talk about.
We can say cancer now, we cansay pregnancy once, a part of
time, that wasn't a thing we cansay erection.
We can say menstruation right,we can say all those things, but
(06:53):
don't talk about death.
People have this kind ofmagical thinking sometimes, like
if I say death, someone's goingto die, but that's of course
not how it works.
It's not how it works, but wedon't have experience in our
life with how to deal with it.
So the things that often come upare a few.
One is the most basic andpractical, which is how do you
(07:16):
even manage the medical system?
Right?
The medical system is chaos.
You wait seven hours in theemergency room.
You don't even know who's thedoctor anyway.
Who's there like who's that guy?
Then there's another guy, thenthere's another person comes in.
Who are all these people andwho am I supposed to listen to
and who's in charge?
People say the physicians orother clinicians will say words
(07:38):
and maybe the family doesn'ttotally understand what they're
trying to say.
And sometimes even physicianswill couch hard things because
we're afraid to say it.
The physician might saysomething well, things aren't
going that well.
What does that mean?
It means that the family justmakes up in their head what that
means.
Who knows what that could mean.
(07:59):
Sometimes a physician says that, and what they mean is it's
time for hospice, that nothingis working, the end is near.
But the family may not hear itthat way.
So there's tons ofmiscommunication just in the
healthcare system.
That's one piece.
That's hard.
Then there are some other thingsthat are kind of more personal
that are hard.
One is that because we don'thave experience talking about
(08:22):
progressive illness and death,the family members often will go
to their own corners and nottalk to each other about it.
And if one person even says,what will we do if the chemo
doesn't work?
Sometimes the family membersjump on them and say don't say
that.
You kids, you have to bepositive, we're not going to
talk like that around here.
And that makes the personretreat.
(08:44):
Right, they just got the whoop.
That's not okay for me to sayso now if they were worrying
about their own death.
Now they're worrying all bythemselves, maybe in a room
filled with family members, andhaving to carry that all alone
because the family wasn'tcomfortable allowing that
conversation into the room.
So that is the part that breaksmy heart, because just at the
(09:08):
time when maybe, time is gettingshorter and connection with the
family is most important,sometimes people kind of break
apart and become lonely withintheir family, and that is
heartbreaking.
Kathleen Mundy (09:21):
I wonder if I'm unique in this.
I remember a time when my dadwas going through this end of
life and I asked him what's itlike for you?
Yasmin Nguyen (09:34):
I'm so sorry.
Kathleen Mundy (09:41):
Sorry, don't be sorry.
He said something so profound.
He said to me it's like beingencased in cement.
I got it.
I really that changed.
Dr. Delia Chiaramonte (10:02):
So sorry, please don't be sorry.
This is exactly what we shouldbe doing, which is feel the real
feelings when things are hard.
Kathleen Mundy (10:11):
Well, it changed our conversations from that
point forward because all of asudden I really understood he
was feeling no one was trying tointerpret.
Yasmin Nguyen (10:25):
I know it was raw , it was real.
Kathleen Mundy (10:29):
Yeah, I think that, oh, pardon me, sorry,
please I think that we shouldallow ourselves the opportunity
to ask these hard questions tothem so we have an understanding
.
Wow, oh, please, it's OK.
(10:52):
Yeah, I guess I'm not over it.
Dr. Delia Chiaramonte (10:55):
I'm so sorry for your loss.
Losing a parent, no matter howlong it's been, is just a
life-changing experience.
Kathleen Mundy (11:02):
In your book you mentioned how it's important to
accept things and how somepeople don't do it and they
don't allow them to speak abouttheir oncoming death, and that's
what spoke to me.
I was grateful for anythingduring those months.
I was grateful that I actuallyhad the courage to ask them that
(11:24):
question.
Dr. Delia Chiaramonte (11:25):
I'm so proud of you that you did that.
Yasmin Nguyen (11:28):
Delia, the work that you have shared is so
powerful.
It touches us to our core, someplaces that women have known
has healed, and you're reallyhelping us share and express the
real experiences in our lives.
And that's what thisconversation, this show, is
about is really tapping into therealities with love, with
(11:51):
kindness, with generosity, withwisdom, so that we can all
experience a better placetogether.
Dr. Delia Chiaramont (11:59):
Absolutely , and I'm really touched by that
story that you told us,kathleen, because you allowed
him to share something thatbefore he may not have been
sharing, but he was certainlyfeeling it and he was feeling it
all alone, and anytime we'regoing through something tough,
it's better to share it withsomebody who cares about us than
(12:19):
to go through it all alone.
You have such a great exampleof how having that connected
moment even though you couldn'tmake it, not feel that way to
him, but just having thatconnected moment was so powerful
for you and I have no doubt itwas powerful for him.
And that's exactly the pointhonestly, that's why I wrote
this book is for exactly whatyou just described.
(12:41):
Because if we're afraid to askthose questions, how are you
doing?
What does it feel like?
Are you afraid?
What can I do for you?
The thing I think is importantto say is we don't have to know
how to do it.
Well, there's no right words.
You can just come in someone'spresence and say I literally
(13:02):
don't know what to say.
I have no idea what to say.
I wish I could fix this, but Iknow I can't and I don't know
what to say.
I just want you to know that Ilove you and I'm here.
That's all I've got.
That's amazing, right?
You don't have to have theperfect words.
Yasmin Nguyen (13:15):
Right Dilya.
I'm curious, aside from couragethat Kathleen exhibited, to ask
for those who may not be inthat place.
Where they have that courage,how do you approach or how do
you ask those questions, or howdo you initiate a conversation
that feels so scary?
Dr. Delia Chiaramonte (13:38):
No one has to have the courage first.
Really, it's an act as if kindof thing.
You can be shaky and crying anda mess or have no idea what
you're about to say, but justbring your wholehearted open
self to the other person'spresence.
And you can even do it withsilence.
If you really come to someone'sbedside and you bring your open
(14:00):
self and you allow tears toform in your eyes.
If that's what you're feelingand you hold their hand and you
squeeze it, that counts.
You don't even need words.
Kathleen Mundy (14:09):
When I was reading your book, that became
almost a mantra.
It's silence is a language thatwe don't often use, and I think
that was very profound, thatyou mentioned that several times
throughout, and you'reabsolutely right.
Dr. Delia Chiaramonte (14:26):
Thank you for highlighting that.
It is so important.
And what I find that sometimespeople do instead is things they
do things like well, I'm goingto go clean the kitchen, dad and
I put all the things away andI'm now I'm going to go to the
store and I'll make us somedinner and, yes, everybody has
to eat.
But you know you can order.
Like, don't do that.
How about just sit quietly bytheir bedside or read them the
(14:48):
newspaper or watch a movietogether, even if they're
sleeping through half of it?
We sometimes do when we'reanxious because it feels safer,
like I know how I can dosomething.
I could do the laundry, I'll godo the laundry, but we really
want to not do that, if possible, and just leave some of that
and just be present with eitherthe person who's ill or with
(15:11):
another family member, just bepresent in the scary stuff.
And that's really theacceptance part, I think, is not
that you accept that someone'sdying, as though you like it,
and of course you don't like it,but just things are what they
are, right and pretending isworse.
When we're pretending, we can'tbe real and part of what we
(15:32):
want to do and we have limitedtime with someone is to be in
their presence and to be real.
Yasmin Nguyen (15:38):
Speaking of presence during your book launch
, you had talked about the 10different experiences that I
think you went through.
I'm curious if you would sharewhat were some of those other
ones and expand a little bitmore on what do you mean by
being present to the suffering?
Dr. Delia Chiaramonte (15:55):
Sure.
Let me just share briefly thebackground to that conversation.
So one of my children had aninjury, a pretty significant
injury, when she was a middleschooler and there was a very
long recovery and there weretimes when we didn't know if it
was ultimately going to be okayand there was a ton of physical
(16:19):
suffering and emotionalsuffering involved in that.
And so the first part that washard for us and I found the same
things that were hard for meand my family were the same
things I find in my patients andtheir families, and the first
one was just to be in thepresence of someone else who's
suffering.
So when someone is suffering,it feels easier to go downstairs
(16:42):
and do the laundry than to bewith them.
It's hard to be with someonethat you care about who's
suffering when you can't fix it.
If you could fix it it would beeasy, but if you can't fix it,
it's hard in so many ways.
It's hard because you love them, it's hard because you feel
that you get guilty or broken,sort of that.
(17:04):
You can't make it go away.
And it's physically hard.
Even the way human beings are,we often take on what other
people are feeling and you mayfeel headache or tightness in
your chest or tense in your body, when you see someone else
suffering and it's hard to stay,it's hard to be in their
presence, but also it'simportant because they feel it
(17:25):
anyway.
They can't run away from it,and so there's really like
they're suffering alone orthey're suffering with company,
and it is almost always betterto have somebody who cares about
you, who at least sees you, andit's important to be seen.
And so the image that I findhelpful, that was helpful for me
(17:45):
and is helpful for the patientsand families that I've cared
for, is to walk beside someone.
So when we feel like I have tofix this and I can't, it's
unbearable.
But when we see like you arewalking up a very tall hill here
, I can't make the hill besmaller, but I can walk beside
you and then at least you're notwalking up that hill yourself.
Kathleen Mundy (18:09):
I think the one of the things that sometimes
families try and do is justcontrol the situation.
Yes, and when you take thattime to be present in that
suffering, you have to acceptthat you can't control it.
It is an uncontrollablecircumstance and for a
(18:30):
control-free it's reallydifficult.
I wouldn't have the skill setto do so, and I think that one
of the things that you mentionedin your book is that some of
the practices that you're goingto talk about of course I've
interrupted you twice now, butof the 10 points you mentioned
how often you need to practicethese so that you become really
(18:52):
good at it, so that you canutilize it when it's necessary.
Dr. Delia Chiaramonte (18:57):
Correct, and I do want to speak, since
you mentioned it, about controlfor a moment.
What people tend to do becauseit makes them feel better,
they're not being bad people,they're just trying to survive a
difficult situation is it feelsgood to control something, even
if the something is kind ofirrelevant.
So that's what makes people godownstairs to do the dishes when
(19:18):
their loved one is suffering.
I can't fix this, but Icouldn't do the dishes.
But we have to check ourselvesfor that and make sure we're not
trying to control somethingthat is irrelevant to the story
and instead let that go and bepresent, even if it doesn't feel
like we're doing anything.
But we are doing somethingbecause what we're doing is
presence with another person andthat counts.
(19:40):
So I do think that's animportant thing to look at,
because people often thinkthey're doing a good job by all
the controlling that they'redoing, and this comes up very
often with aging parents.
So let's say, aging parents whoare still cognitively intact, so
they should be making their owndecisions, right, boy?
The kids want to controleverything that their aging
(20:01):
parents are doing.
You need to stop eatingSnickers bars, and you have to
exercise and you have to bebetter about writing down your
medicines and you have to go tothe day program, you have to do
all these things and they cancreate conflict with their
parent just when they're notgoing to have that much time
left with their parent.
And this idea of people who arecognitively intact are allowed
(20:25):
to make their own bad decisionsis really important, right?
Yeah, sure, maybe they shouldeat more vegetables, but
probably you should have whenyou were a teenager too, and you
didn't.
And people are allowed to maketheir own bad decisions, so we
should prioritize therelationship.
Yasmin Nguyen (20:40):
Oh, that really hits home.
I found myself Mom, you need tostop eating that sugar stuff,
Dad, we need it.
And then of course, I feel badafter I've kind of shamed or
judged them.
I feel like the roles were kindof reversed, like back in the
day they were telling me thisstuff and now it's my turn.
But now I realize I have totake a moment and pause and
(21:03):
catch myself and notice that, oh, am I more committed to being
right or am I more committed tobe loving?
Kathleen Mundy (21:10):
There you go, that's true.
Yasmin Nguyen (21:12):
And it's that moment of pause that, okay, it
doesn't need to be this way, thething doesn't need to be over
here, it's okay, I'll just moveit later.
I don't need to yell at themfor it or anything like that.
Dr. Delia Chiaramonte (21:25):
Good for you for having that realization.
It's really important.
It's hard, it's hard but it'simportant.
But you can say your thing onceor twice, maybe three times max
.
Maybe they don't know sugar isbad for you, whatever.
Just in pace you can say itonce or twice, but if you've
said it a few times and they'renot listening to you, you know,
stop.
They're allowed to make adecision that you think is wrong
(21:48):
, Even if you are legitimatelycorrect.
It would be better to do ityour way.
They're allowed to make adecision that's different than
what you think and what mattersmore?
The relationship, or themeating more vegetables, right?
So if you could say well,before they died, they ate a lot
of vegetables.
Kathleen Mundy (22:05):
We hate each other now, but they sure ate
vegetables, and I want to justask what does it matter at that
point in their life if they eatvegetables or candy bars every
day?
It's not life changing.
Dr. Delia Chiaramonte (22:16):
But it is the urge we were talking about
before to control somethingcontrollable when you can't
control the uncontrollable.
So my parents are aging andthat breaks my heart and I'm not
going to have them forever andoh my gosh, that's terrifying.
So I'll focus on this otherthing instead.
But really, the acceptance partis wow, life is finite and for
(22:39):
my parents it is potentiallyparticularly finite.
Oh, we never know that, butpotentially, and that's hard.
Let me be with that.
Instead of trying to controlother things to make myself feel
better in the moment, let methink well, wow, how, how, what
do we need to repair with eachother?
How can we just spend some funtime together?
What would be a new experiencethat we could have together?
Focus on the relationship,prioritize the relationship.
Yasmin Nguyen (23:03):
Speaking of control, there's a lot of
emotions that go with that, andone of the ones that that
typically accompany controllingis anger, and I remember you
mentioning something about beingthe brunt of their anger.
Can you talk a little bit aboutthat?
Dr. Delia Chiaramonte (23:17):
That's a great question.
So when someone is suffering,they often feel angry because
their life got messed up.
That was the case for mydaughter.
But people who have cancerthat's not fixable people whose
life didn't turn out how theywanted even if they're, they
have normal aging but they'relooking back at their life and
(23:37):
they didn't do the things theywish they done or they missed
opportunities that they can'tgive back now.
People feel angry sometimes andthat's legitimate that they
feel angry.
But they also sometimes sharethat anger with the people in
their life and that can be hard.
Now it's better if we can see itkind of from the up high, like,
(24:00):
wow, that person, my loved one,is feeling legitimately angry
about this thing that ishappening to them.
They're sharing it with mebecause they feel safe with me,
but that's hard for me.
So, seeing it in that way, youcan make a plan, like sometimes
you can set boundaries and say Ineed you to stop yelling at me,
please.
I hear how much you'resuffering, I hear that you are
so suffering, but it hurts mewhen you yell.
(24:21):
So if you could yell less, thatwould be better.
You can do that.
You could just find other waysto fill up your cup to
experience for yourself like,wow, that was a hard interaction
.
I feel kind of stressed outabout it.
I'm not going to yell back atmy loved one because that's only
going to fracture arelationship.
It won't help anything.
But I've been kind of wounded alittle bit.
So let me go for a run, let metake a shower, let me call my
(24:45):
therapist, let me talk to afriend, let me write in my
journal, let me go cook, let mego create something, whatever it
is that is in our own fill up,our cup plan.
So I think not being reactiveand seeing the big picture makes
it much easier to tolerate, asopposed to if you're just in it
and they yell at you and youyell back.
Then your relationship isfractured again and nothing good
(25:07):
came to that.
Kathleen Mundy (25:09):
You know, this brings up a question that I have
now Is that, if you're acaregiver, how can you deal with
the frustration and theresentment when you're trying so
hard and yet it seems sometimeslike they don't appreciate what
you're doing or the sacrificesthat you might be making?
How would you advise acaregiver to deal with something
(25:30):
like that?
Dr. Delia Chiaramonte (25:31):
It's such a great question.
That happens all the time.
So in the fantasy world wewould be loving and we would
show up with our presence, andthen the other people would be
so appreciative and they wouldtell us how wonderful we are in
a relationship with each other.
Sometimes that happens, butoften it doesn't happen quite
that way, because both peopleare suffering.
Plus, we bring our ownpersonalities to our
(25:54):
circumstance and there may havebeen conflict between the people
before.
It may be that the person, thepatient themselves, is so angry
that they can't feel grateful.
So the first thing I would sayis we have to be realistic about
what we can offer withoutdepleting ourselves too much,
and that it's okay to do less.
(26:16):
And this may sound harsh, butthat's the way it is.
So we shouldn't give so muchthat we're hanging on by our
fingernails, dusted, depleted,sick, resentful People do that,
but that's not the best approach.
In the book there's a chaptercalled you Song Creating an
Imperfect Plan which counts,even if there's just one child.
(26:39):
The idea that it's true, it'snot going to be perfect, this
fantasy, if I'll just give upeverything and care for my
parent and then they'll be soloving.
Yeah, it sometimes doesn't workthat way at all.
So the idea really in theImperfect Plan is let me
self-reflect what can I dowithout feeling completely
depleted?
So maybe I can come over twicea week, but if I come over seven
(27:02):
days a week I'm going to loseit.
So you don't do seven days aweek.
So the first thing is what can Ido without feeling totally
depleted?
Who can I get to help me?
Who else can help me?
And the obvious people if thereare siblings or other immediate
family.
But how about the next levelout?
How about friends?
How about neighbors?
(27:22):
How about the next level out?
How about people at religiousorganizations or in your book
club or at work?
And how can people help?
So sometimes people can help byshowing up and actually doing
things.
Sometimes they help by sendingfood, but sometimes they can
help with money.
Some people can help with money.
They might be like I'm notcoming over and I'm not wiping
(27:43):
any butts, but I'd pay for somethings.
And they might pay for somehome health care, right, so that
you can have a break.
So I really think the centralcore in your question is to only
give what you can give and thenbe creative about getting help
for all the other stuff.
Kathleen Mundy (28:05):
That's a really good point.
I know that oftentimes you feelobligated to do absolutely
everything, but the point thatyou make that some people who
can't spend time might have theresource to get a cleaning help
or something or have someonecome in and do the laundry I
think that's really, reallyrelevant because it gives you an
(28:25):
opportunity to step back alittle bit, and in your book you
mentioned that you knowremoving yourself and kind of
stepping back and letting go alittle bit.
Dr. Delia Chiaramonte (28:34):
Yep, right, exactly.
And so that concept of I feelobligated.
If you're running on obligationand you're pushing yourself so
much that you're depleted,you're not a very good caregiver
anymore and your personprobably is not feeling better
that you're there, becauseyou're probably crabby and
annoyed and they might feelafraid to ask for anything.
(28:56):
They will feel your negativeenergy.
So it's much better to givewhat you can give and still keep
positive energy and get helpfor the rest of the stuff than
to be like, no, it's fine, I'lldo it, and you show up with that
energy.
Yasmin Nguyen (29:09):
That's actually not great, even for the person
you're trying to help.
That's such an importantdistinction.
Delia, the energy of obligationand a conversation with mentors
in the past.
They've helped me notice thedifference between when you make
a decision to do something outof obligation, rather out of
(29:31):
excitement or love, what bounceback is resentment.
Dr. Delia Chiaramonte (29:36):
Yep, they will feel that, and I think
that avoiding regret is a prettyimportant piece of this whole
thing, because when you're in ityou can be like, fine, I'm here
, I'm annoyed, and they can tellI'm annoyed, but whatever, at
least I'm here.
But then at some point theywill be gone and you don't want
to be stuck with that thinkinggosh, the whole last year I was
(29:58):
just annoyed and that's not howI want to end my relationship
with this person.
So the other piece to this, Ithink, is that when we ourselves
are depleted, hard things areharder.
So part of the answer to yourquestion that's maybe one step
back is that we actually reallyneed to work on filling up our
(30:18):
own cup so that we are as filledup as we can be, because we
probably can help more than, andwe can help in a more loving
attached way than that.
If we're just like I'm workinglike a dog, I'm volunteering,
I'm doing these extra things,I'm cleaning my house myself,
I'm making dinners every day,I'm driving the kids all by
(30:40):
myself to all the things and I'mjust white, that person trying
to provide caregiving is reallyhampered, whereas if they could
do some things to lighten theirown load, like.
Maybe someone else can drive mykids to some other things and
maybe I can order in healthyfood sometimes and maybe I can
get somebody else to clean thehouse now and then.
Maybe I can lower my standards alittle bit and just let it be a
(31:01):
little messier, for right nowit's kind of a crisis time.
Maybe I can work a little bitless at work or do a day at home
, I can ask anyway.
So what are the ways that wecan reduce the things that empty
our cup and add more thingsthat fill up our cup?
Maybe I really need an hour ortwo alone every weekend.
(31:21):
I can pick the place in myhouse and put a note on the door
and say nobody bother me unlessthere's blood.
This is my time.
Maybe I need to join a runningclub, or maybe I need to have a
book club, or maybe I need to goget a massage every other week.
What are the things that I needto fill up my cup so that I'm
in a better space and from there, the person who is ill will get
(31:44):
the very best of me.
Kathleen Mundy (31:47):
I was really inspired by your concept and how
you deal with what you calltoxic positivity.
That struck me as a concept Inever, ever thought about before
.
But I know many people go intothis positivity lane and almost
push away reality, thinking thatthey're doing the right thing.
(32:08):
And just explain your concept alittle bit for us, sure.
Dr. Delia Chiaramonte (32:12):
Thank you for allowing me to speak on
this because I think it's reallyimportant.
Actually, people get confusedabout gratitude and toxic
positivity.
So gratitude meaning lookingfor the things in your life for
which you are grateful isgenerally a healthy
psychological thing to do.
It reduces anxiety, it reducespain, improves sleep, depression
(32:34):
et cetera.
But toxic positivity is reallybrutal.
The concept there iswhitewashing all the bad things
away.
No, it's fine, everything'sgreat, it's going to be fine.
So if someone says, gosh, thedoctor said the chemo might not
work, a loved one this happensall the time will jump in and
say don't you say that?
(32:54):
That's not true.
We have to be positive.
If you're not positive, it'snot going to work and all that
does is shut down the person whowas having some realistic
concerns about how things aregoing to go.
So toxic positivity is likewhite paint over the moldy wall
it looks good for a second andyou might think that it's good,
(33:15):
but it is covering up somedifficult stuff underneath and
it's not psychologically goodfor anybody.
So the trick that I like to usethat allows space for both the
hard parts and also the gratefulparts is this sentence of I
(33:37):
don't like or I hate, if youwant that.
I don't like blank, but at leastblank.
So I don't like that.
I have cancer, but at least myfamily lives in town.
I don't like that.
My headaches won't go away, butat least the snow stopped.
(33:58):
I don't like that.
My child's not doing well inschool, but at least we got this
great dog and it's brought themood up in the house.
They don't even have to berelated, so I don't like that.
I have to go get a mammogramtoday, but at least I had a
great breakfast.
The point is it makes space forthe thing I really don't like.
It doesn't say I don't hatecancer.
(34:22):
It allows space for it.
Hate that.
But then it just gives you thespace to turn your head of your
attention a little bit and saybut here's something I could
show, a moment of gratitude.
That's so powerful, dilya.
Yasmin Nguyen (34:37):
And the distinction with that particular
phrase is that you'reacknowledging what's there.
You're saying that, hey, hereit is, but I don't have to like
it.
But then I appreciate somethingelse.
It's not, like you said,whitewashing and saying no, no,
no, it's not there, I don't seeyou, I don't see you.
But it's just saying, hey, it'sthere and I'm focused on
(34:57):
something more positive, exactly.
Kathleen Mundy (35:00):
But this skill set could be used absolutely
every day, whether you're in acrisis or not.
Dr. Delia Chiaramonte (35:07):
It should be.
I do that all day long.
It changes the way you carryyourself through the day.
Any time I go gosh, whatever itnow it pops to my mind and most
of the time, most of the time,I'm able to say, yeah, I don't
like that thing, but at leastthis other thing, and it just
lightens the heavy a little bit.
It just reminds you that, yeah,that stinks, but look, there's
(35:30):
other stuff too, and it's awonderful psychological tool.
Here's what I love at the booklaunch party last week I shared
that, and since then people havebeen texting me their phrases
that they did that day, and itmakes me so happy.
It makes me think, oh, we allshould be doing this all the
time.
We should be texting ourfriends.
Oh, I don't like blank, but atleast blank.
Kathleen Mundy (35:49):
It's a great size I'm going to share with you
.
I used it immediately becauseit's knowing like crazy here and
I said I don't like cold, snowydays, but I get a chance to
look at the forest behind wherewe live.
Dr. Delia Chiaramonte (36:03):
So I love that I was able to use that.
Perfect, exactly perfect.
That's great Thanks for sharingthat.
Yasmin Nguyen (36:11):
Delia, you had mentioned earlier about
navigating some of the healthcare system and the challenges
that are out there, and,kathleen, in one of our
conversations we talked aboutsome of the delays that we
experience in getting news aboutvarious different diagnoses or
perhaps even being heard by ourprofessional caregivers too.
(36:33):
And so, deely, I'm just curiouswhat's your experience been
like and what are some thoughtsthat you have around navigating
some of those particularchallenges as a caregiver with
the health care system?
Dr. Delia Chiaramonte (36:46):
Yeah, boy , the health care system is kind
of a mess, I'm sorry to say,and so because of that, I would
say that being organized andvigilant and a really good
communicator, those are probablythe key things.
So, organized, I give anexample in the book of how you
might organize your medicalrecords, and actually on my
(37:08):
website too is something peoplecan download about how they
should set up their notebook.
This is important because youmight assume that if you go to
two doctors, that they both knowwhat medicines you're taking.
Or if the new guy changed yourmedicine, he told the old guy,
no, he didn't.
So nobody knows what you'retaking except you.
You go to a hospital, they'llpull up the medical record from
(37:28):
when you were there two yearsago.
They might write down thosemedicines as though those are
your current medicines and theymay not be your current medicine
.
So you as the patient andfamily are the source of truth,
and so you have to have anotebook that has all the stuff
and carry it around with you sothat the source of truth is with
you and you share it, so thatin terms of organization, I
(37:49):
think is really important.
Related maybe to that one iswrite down your questions before
you go into the office, becauseyou'll think you'll remember.
And then, as soon as you gointo the office you forget all
the questions, the doctorsrushing around, then they leave
and you go oh, we didn't askabout that thing.
So write down your questions,have them open and then write
down the answers.
And if you're not able to writedown the answer because you
don't totally understand, askagain so they totally understand
(38:10):
.
So organize all the informationfrom all your medical
experiences in one place.
Vigilance, unfortunately, isvery important.
There are tons of medicalerrors every year.
It's nobody's fault per se.
Doctors and nurses are doingthe best they can.
The system is chaotic.
It'll blame anybody, but it's afact there are errors.
(38:30):
So if I have a loved one who'sin the hospital, as much as
possible I would try to havesomebody there.
So that's an example of how youcould bring in other helpers.
You don't have to be thereevery minute.
Maybe there's a neighbor whocould come for a few hours, or
people from church or synagogueor your mosque could come for a
while.
Maybe someone from work couldcome for a while.
(38:51):
But as much as possible it'sgood to have somebody there and
watch what's happening.
So if they give pills andthere's a blue one, and there
wasn't a blue one there beforesay whoa, hang on one second,
what's that blue pill and whyare they taking it?
And if the nurse isn't sure,say wait, don't take that yet.
Go, please call the doctor andask them what that pill is for,
(39:14):
because there's a possibility itcould be for somebody else.
Kathleen Mundy (39:18):
You know I keep relating this story about the
experience I had with my father,but when he was hospitalized
for a few months actually nearthe end I had a notebook that I
asked people when if you visitLyle, would you please give me a
description of what you find?
It was a huge advantage and Iwould leave a note for the next
(39:39):
person who might be in it and itreally helped reduce my anxiety
and it was a nice threadthroughout his time that he was
with us.
Dr. Delia Chiaramonte (39:51):
That's a great example and a really
important thing to do.
Thank you for that.
Yasmin Nguyen (39:57):
That's so powerful.
Wow, delia.
We're so grateful that youbring such richness in
experience and experience andwisdom.
And for those interested inlearning more about Dr
Caramonte's work and her amazingbook, visit
wwwcopingcouragiouslycom.
We'll also include the links toher website, book and resources
(40:19):
in our show notes atwwwrealretirementshowcom.
Kathleen Mundy (40:25):
Well, you've opened my eyes to a lot of
things today and yesterday, andthat was the best 24 hours to
spend with the book.
Dr. Delia Chiaramonte (40:32):
Well, thank you so much.
Thank you for reading it, and Iappreciate those kind words
very much.
Yasmin Nguyen (40:36):
Thank you, Delia.
We're so blessed and gratefulthat you hear that your mission
is helping so many people, notonly within this retirement
conversation, but so many othersas well, and this is an
important topic that I think wejust don't have an opportunity
to really explore much, and thatyour book is a gift that allows
us to do so.
Kathleen Mundy (40:58):
Absolutely.
Yasmin Nguyen (40:59):
Kathleen, anything else?
Kathleen Mundy (41:00):
Well, this has been an emotional journey for me
.
For sure.
We are blessed to have someonelike you, who takes this journey
to help others, because it willbe life changing for them.
The memories that they willcreate, the legacy that they
will leave, will be somethingthat they can be incredibly
proud of, with your help.
(41:20):
I think the lessons we learnedfrom each other are lessons that
we absolutely hold as gold, andwhen we have like-minded people
that are open, open hearts,open mind, come together and
share those experiences thatactually will help someone else
in their journey is why I thinkpeople are put on this earth.
(41:41):
Just in closing, I just want tosay I have a 95-year-old
mother-in-law that I don't havea lot of experience dealing with
this up until I am now dealingwith it, and the information
that you provided really isgoing to give me insight into
how I can make the relationshipbetter and her experience here
better.
I'm looking forward to ourblossoming new relationship.
Yasmin Nguyen (42:06):
Thank you for taking the time to join us today
.
If you enjoyed this episode orfound it valuable, please
subscribe, follow and leave acomment or a view on your
favorite platform.
If you have friends, clients orloved ones who are retired or
thinking about retirement, weinvite you to share this show
with them.
Check out the show notes withlinks to resources mentioned in
(42:28):
this episode atrealretirementshowcom.
Remember, retirement is ajoyful journey we get to
experience together.
Join us next week for anotherreal retirement conversation.
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