February 29, 2024 • 47 mins
This episode of Next Question was produced in partnership with Capital One, and recorded live at the Capital One Cafe in Herald Square in New York City. In it, Katie and a panel of caregivers explore the vast spectrum of challenges facing caregivers — those of us who find ourselves taking care of a loved one when they can no longer take care of themselves.
As our panelists Chris Punsalan, Adrienne Glusman, and Capital One’s own Celia Edwards Karam share from personal experience, it can be a terrifying, overwhelming task — from the sudden windfall of money decisions and the struggle to sort out a workable financial plan at a time of immense uncertainty, to the psychological burden of simultaneously caring for a loved one while mentally preparing to lose them. But there are also moments of grace, connection, and priceless time together that will stay with our panelists for a lifetime.
This conversation is both a practical guide and, we hope, a source of real inspiration and comfort for navigating an enormously challenging phase — one that most of us will face at some point in our lives.
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Speaker 1 (00:01):
With no fees or minimums. Banking with Capital One is
the easiest decision in the history of decisions. That's banking.
Reimagine what's in your wallet. Terms apply see capitolwe dot
com slash bank Capital one NA member FDIC. Hi everyone,
(00:21):
I'm Katie Kuric, and this is Next Question. Welcome everyone
to this live taping of Next Question with me Katie Kuric.
I am delighted to bring you this conversation on the
cost of caregiving in partnership with my friends at Capital
(00:44):
One here at the Capitol One Cafe at Harold Square
in New York City. I'll be introducing you to the
panel in just a moment, but first a bit of
why we're actually here tonight. Roughly ten thousand baby boomers
will turn sixty five every day for the next decade
or so and are likely to enjoy longer lives, living
(01:06):
to eighty ninety even beyond fingers crossed. That's a lot
of retirement years, and unfortunately, not all of those years
are lived independently within home and assisted living. Care costs skyrocketing,
taking care of aging relatives is falling more and more
to their own loved ones. It's not easy. In fact,
(01:30):
it can be overwhelming. So we're going to talk about
how you can actually be prepared, whether you're a caregiver
or you're the person being cared for. We're also going
to talk about the unexpected joy and meaning these situations
can actually bring about. So tonight, our guests are Celia
(01:51):
Edwards Karum. She is the president of Retail Banking at
Capital One. She has championed a people first approach to
banking to act as a partner to customers whatever stage
of life they happen to be in. Adrianne Glessman is
host of the Young Life Interrupted podcast. It's a weekly
(02:11):
dose of community where guests and hosts share personal stories, insights,
and conversations with other caregivers. And finally, Chris Fusalid has
built quite the community via social media. He's very active
on TikTok, where his videos about caring for his grandmother
(02:32):
go out to not only two point four million subscribers,
but get millions of views. And I'm very jealous of that, Chris.
But let's begin the conversation with the financial challenges Celia
of being a caregiver. So I know this situation is
affecting more people than ever, can you kick things off
(02:55):
by outlining the role you see caregiving playing in people's
financial lives.
Speaker 2 (03:01):
I love this question, and caregiving is such a broad topic.
We're going to mostly talk today about caregiving for the elderly,
people who we helped raise us maybe who we are
now going back to help take care of them. We also, though,
sometimes think about caregiving in the context of kids, and
one of the things we're seeing in our customers and
really learning about from people is this notion of the
(03:22):
Sandwich generation, people who find themselves giving care to elder
parents and giving care to kids and all of the
just the overwhelm that can come with a situation like that.
I think from a financial perspective, caring for the elderly
is probably something that many of us will have to
contend with. And so in that same way that we
(03:43):
might plan for retirement, or we might plan for a
child to be able to go to college, we might
save for those things. Saving for what it might mean
to have to care for someone is something that I
think is a you know, part of prudent financial well
being and financial health.
Speaker 1 (03:58):
How do you do that though? How do you you know?
What are the actual practical steps Celia people can take
when talking about the future and being and either a
caregiving role or being cared for.
Speaker 2 (04:13):
Well, I'll talk a little bit about how Capital One
helps with this, but I actually think lots of people
across the banking industry are really thinking about how do
we help meet customers where they are and help with
this caregiving need. Here at Capital One, one of the
things we focus on is a program called Money in Life.
And really the purpose of Money in Life is to
have a conversation with you to understand what your goals are,
(04:35):
what's going on in your family, what do you think
might be going on ten, twenty thirty years down the road,
and how do you start to build a plan for yourself.
It's not about your advisor telling you what to do.
It's about that person meeting you where you are and
helping you develop a set of goals and a plan
to then work towards those goals in the same way
that you might work against any other goal. But really
(04:56):
having that sort of shepherd in advice to help you
get structured.
Speaker 1 (05:00):
Kind of motivate you, because I imagine a lot of
people really feel uncomfortable having this conversation, like honey, girls
my daughters when I'm old and incapacitated, I'd really like
this and that I mean, it's really kind of an awkward,
it's kind of depressing, and people just don't really want
(05:20):
to bring those things up and they really need to.
Are there ways that you can cut conversation starters or
things people can do to make it to break the ice?
Speaker 2 (05:31):
Yeah, it's It's funny. Everything about money can be a
little bit anxiety producing, and you add to it this
notion of forecasting to some time in the future where
you might not be as healthy as you want to be.
I think two of the things that we've seen work
and that I've really learned from this kind of money
and life coaching program are around, you know, opening those
(05:52):
conversations with your kids or your niece or nephew, whoever
it is in your family that is the right person
to have that conversation with an honest let's talk about
the future and what do you want for the future,
and what do I want and making that sort of
more of a conversation. It might be a little bit
of a hard topic, but there's no substitute for waiting
into it.
Speaker 1 (06:11):
We want to talk to our caregivers in a moment,
But do you find that a lot of companies. It
seems to me this issue has really been brought to
the forefront. We've been talking hearing about the Sandwich generation
for a while, but I think as we talked about
more and more people are finding themselves in this situation.
Do you think other companies, including Capital One, are embracing
(06:34):
this issue, are thinking about it in terms of helping
their employees in general, And just as somebody who's in
the industry, what are you seeing not only in banking
but in different companies, especially because the population is aging, right,
It's total right now.
Speaker 2 (06:51):
This is something that I think you said at the
beginning that everyone's going to have to contend with at
some point or another. In our associate group, we have
what we call affinity groups that we set up for
different groups of associates to come together on a topic.
In twenty twenty or maybe twenty twenty one, we launched
something called and Family at Capitol One, which is really
about supporting associates who are going through the caregiving moment,
(07:14):
and whether that caregiving is for someone who is aging
or someone who is sick, or if it's for children,
whatever the nature of caregiving happens to be actually just
finding a group where you can have like minded conversation
about how hard this is, about you feeling exhausted, sometimes
about feeling guilty for feeling exhausted. There's a lot of
(07:36):
complex emotion and just knowing that you're not in it
alone has been a really important part for our associates
to come together in that way and then to feel
supported by a company who gives them space to give
that connection and really start to find a place for
themselves in the company.
Speaker 1 (07:52):
And a lot of loneliness and social isolation. Adrian, I
know you started caring for your mom Hetty when you
were twenty nine years old. Can you describe what was
happening in your world and why you found yourself in
this position?
Speaker 3 (08:08):
So my world was here in New York City, my mom.
I'm originally from Florida, so my mom was all the
way in Florida and I was twenty nine. I always
like to say I was living like the sex in
the city, you know, dreams, a single girl in the city.
Speaker 1 (08:22):
True, here are you Carrie, Miranda or Samantha.
Speaker 4 (08:24):
I won't say, I won't say Samantha, but you know
I was single, and I was trying to figure out
my career path and just having a great time with
my friends.
Speaker 3 (08:37):
So those years are kind of selfish, so I was
being very selfish in everything I was doing. Now, I'm
an only child of divorce parents, and my mom and
I are very close, so I always knew that I
was going to have to care for her one day,
but in my mind, it wasn't going to happen for
another thirty years, when I was probably and had children
(09:01):
and was very established and had already hit all of
those milestones. So my mom was diagnosed with multiple system atrophy,
which is a neurodegenerative rare disease, and at first, seemingly
it seemed like everything was okay. I was able to
manage her care from a distance, but then when I
was flying home to visit, I was starting to notice
(09:22):
that things were off, and I said, Okay, I'm going
to have to start stepping in a little bit more.
There were times I was up here and I had
to fly home at the drop of a hat book
a one way ticket because my mom was in the
hospital and there was nobody to be with her, and
I wasn't going to leave her alone in the hospital
I needed to advocate for her, so as her disease
(09:43):
started to progress, I finally decided this long distance caregiving
it's just way too tough, the anxiety that I was
going through every single day if she wouldn't pick up.
Speaker 5 (09:53):
The phone, not knowing what was going on, trying to.
Speaker 3 (09:56):
Have a life up here, balance this whole other hidden
life because it wasn't something I say hidden because I
didn't talk about it. I didn't talk about to my
friends everything I was doing with my mom because they
wouldn't understand.
Speaker 5 (10:09):
Nobody had gone through this before. So I finally made.
Speaker 3 (10:12):
The decision in twenty fifteen that I needed to move
back home because.
Speaker 5 (10:17):
It was too much to care for her at a distance.
Speaker 3 (10:20):
And moved back home, which provided a whole nother facet
of caregiving. Even though it wasn't long distance, being right
there has its own set of challenges, and really it
turned my world upside down. I never in a million
years thought I was going to move back to Florida,
where I was born and raised. I thought I would
live in New York forever or go live abroad. I'm
(10:40):
such a free spirit. I kind of went where the
wind would take me. But here, I was back in
this role to care for my mom. And as hard
as it was for me to leave New York City
and give up this amazing city, this life that I
had built for myself, all of my friends, I had
just got offered my dream job working in travel dr
(11:01):
and I had to just give it all up and
make the decision to move back because I knew that,
just like my mom had cared for me my entire
life and was an incredible mom, that it was my
turn to care for her.
Speaker 5 (11:14):
It just came way too soon.
Speaker 1 (11:17):
Chris. Before we talk about how you all have shared
your experiences, tell me how you wound up in your situation.
Speaker 6 (11:24):
Yeah, so, about eight years ago, my grandmother, my grandmother
was no longer able to get out of bed. It
was just like all of a sudden woke up, couldn't
move anymore kind of thing. And you know, my family
and I had to have a conversation about whether we
were going to take my grandmother to a facility or
would we hire a full time caregiver to stay at
(11:45):
the house and be with her. Twenty four to seven
and I was just about to graduate college. I had
one semester left. I didn't have any job opportunities lined up,
So I said, you know, my grandmother took care of
me when I was young, so it only makes sense
for me to step up and be responsible. So I
decided to be our caregiver, full time caregiver, and you know,
(12:06):
we did that for eight years, and in the last
three to four years of her life, I decided to
document my life on the Internet and show people what
it's like to be a young caregiver, and a lot
of people gravitated towards it. I got messages from millions
of other young caregivers out there saying that they see
their grandmother or their grandfather through my grandmother, and it's
(12:29):
been a life changing experiences. It's really nice to know
that you're not alone in this really tough and isolating experience.
You know, if you didn't have the Internet, then you
think you're the only one on the planet taking care of,
you know, an elder. So it's been a life changing experience.
And unfortunately, my grandmother passed away a couple of weeks ago,
(12:52):
and it's been tough, but it's been also relieving knowing
that my grandmother lived till ninety seven. You know, she
lived a great life, and I can confidently say that
the last eight years of her life, I don't. I mean,
I wouldn't say that the best because obviously people want
to be up and about but like, I think we
gave her the best life that we could have, and
I have no regrets about it.
Speaker 1 (13:12):
Both of you are so inspiring and made a lot
of sacrifices, and I don't think a lot of young
people would do that. Did you ever, Waiver, did you
ever resent your mom or your grandmother because you both
had to make a lot of sacrifices. I mean, you're
a young man, what twenty two years old, and suddenly
you find yourself as your grandmother's primary caregiver.
Speaker 6 (13:34):
Yeah. I mean we actually just talked about this backstage.
It's it's really it's tough to put your life on
hold as a young person and to give your life
to somebody else. But I wouldn't I wouldn't change it
for the world. And obviously there's a lot of ups
and downs, and there's a lot of dark moments, but
I think looking back at the bigger picture and seeing
all that we've been able to do with my grandmother
(13:54):
and all the things that I've been able to learn
from my grandmother. You know, I wouldn't. I wouldn't change
it for a thing. And I think it is it's
difficult for young people to just say, hey, I'm going
to put my life on pause. It's time to help
out whoever. But yeah, I would. I wouldn't change it
for the world. And I think it's an experience that
I'll never forget, and it's a chapter that I'll hold
close to me and I think, you know, I'll be
(14:15):
learning from that time forever.
Speaker 5 (14:18):
So what about you, Adrian, Well, I'm not going to
sugarcoat it. There was a lot of resentment.
Speaker 3 (14:24):
I mean, like I mentioned, I had to pick up
my life here and just drop everything. I packed up
three boxes and ship them to Florida, something I never
thought that I would do. I was a huge traveler, backpacker,
my friend and I would take trips every year.
Speaker 5 (14:41):
Had to put that on pause.
Speaker 3 (14:43):
So, yeah, there was resentment, and I think there were
many days when I was at some of my darkest
days of caregiving. I was at my worst and I
resented having to take care of my mom. I was
watching all of my friends get married and have kids
and do all of these amazing things. And here I
was caring for my mom and like changing her diaper
(15:06):
and bathing her and managing her medications and her care
and having to make all of these extremely responsible executive
decisions on behalf of my mom. I had a lot
of resentment that was at the beginning, and then I
had to do a lot of growth, and I had
to do a complete mindset change around where I was
(15:30):
and why this was happening, Because I would always be like, God,
why is this happening to me? What did I do
in this lifetime to have this happen to me now
and not years from now? Like what did I do?
I was a straight A student, like I was a
good girl? Like what happened?
Speaker 5 (15:45):
So I had to do a complete mindset shift.
Speaker 3 (15:48):
And once I started shifting my mindset and started focusing
on the fact that I'm able to help care for
my mom, and I'm able to have these years with her.
Speaker 5 (15:59):
And I'm able to give her the joy of having
her daughter, her best friend by her side through some
of the hardest years of her life, that really.
Speaker 3 (16:10):
Flipped the script for me. And it wasn't so much resentment.
It was more kind of like Chris was saying, for me,
it was an honor. When my mom was transitioning, I
told her, I said, Mom, caring for you is and
always will be the highest honor of my entire life.
Speaker 1 (16:27):
Can I adopt both of you? I mean, seriously, you're
amazing and remarkable. Did you ever have a respite though?
Like would you be able to get a break? And
I wanted to ask Celia too about you know, is
the cost of hiring professional caregivers so prohibitively expensive for
(16:48):
a lot of families that many children or grandsons find
themselves in this situation.
Speaker 5 (16:54):
Yeah, I want to answer first I can speak to
that a little bit.
Speaker 3 (16:57):
So unlike Chris, who was a full time caregiver, my
mom actually lived in an assisted living facility, And we
were actually talking about this a bit earlier.
Speaker 5 (17:05):
And it plays into the financial aspect that.
Speaker 3 (17:07):
The only reason that we could afford for my mom
to live in an alf because costs are astronomical, is
that when she was working with our financial advisor, she
started a long term care policy. And if it weren't
for that, I would have been in a very different situation.
I wouldn't have been able to afford along with my
(17:30):
mom's pension and social Security, not only the cost of
her living in an assisted living facility, but as her
disease progressed, she needed extra full time aids, so I
had to hire other full time aids. Mind you, I
was there every single day from three pm until I
put her in bed, seven days a week. But my
(17:50):
story would have been very different if my mom hadn't
been fortunate enough to make some smart financial choices early on.
Speaker 2 (18:00):
This story really resonates with me, and I think one
of the things that Katie said early on is that
people are coming from all different walks of life, all
different financial situations, and maybe most importantly, different levels of
knowledge about how these things might manifest and what kinds
of things you can do. From a planning perspective. Insurance
is one, savings is another. But how many of us
(18:20):
don't actually know to think about that or don't know
who to ask. And I think this is one of
the places where banking as an industry. But then also
I think there are a lot of resources in the
caregiving space that can start to guide people on how
how do you get prepared? How do you think about
some of these tools that you might use? And I
think you said this earlier both like you as the
person who may need care later on, like what kinds
(18:42):
of choices can we make? But then also for those
of us who you know have parents who are healthy now,
I know one of the things I'm often thinking about is, well,
they're healthy today, but how set up are we for
what the next five or ten or fifteen years might
look like? And are their choices you know I should
be making differently to plan for the just in case.
Speaker 1 (19:00):
Can you talk about Asia and your podcast and how
it started and how it gave you a lot of
comfort and support during this period, just as Chris's followers have.
Speaker 3 (19:12):
Yeah, so I always had the idea that I wanted
to start a podcast. I falling into caregiving at a
young age, I realized that the younger generation of caregivers
is such an underserved segment of the whole caregiver community.
When I fell into caregiving, I didn't even know what
the word caregiver was. I didn't self identify as a caregiver.
(19:34):
I self identified as, Oh, I'm an only child, and
this is my mom, and this is what I always
thought I was going to have to do for her.
So I always knew I wanted to start a podcast.
During caregiving, it was just too much. So after my
mom passed away, I said, Okay, I need to kind
of fuel a lot of this energy and time that
(19:54):
I have now into something to give back to other
young caregivers. So the Young Life Interrupted podcast came to be.
I released the first episode on the anniversary of my
mom's passing as a bit of a tribute to her,
and the whole point of the podcast is really to
reach young caregivers to.
Speaker 5 (20:14):
Let them know that they're not alone.
Speaker 3 (20:16):
Like Chris and I were talking earlier, it's a very
isolating experience when you fall into caregiving at a young
age and you literally think that there's no one in
the entire world going through the same thing that you are,
because your friends aren't going through it, you haven't heard
of other people going through it. It's not like when
you're a parent and you can turn to your mom
friends or your dad friends and you can ask advice.
(20:39):
So the podcast really looks to bring different caregivers from
all walks of life, so young caregivers caring for a spouse,
a parent, a grandparent.
Speaker 5 (20:48):
A sibling.
Speaker 3 (20:49):
On the podcast, we have open conversations and a lot
of them are geared towards the topics that we as
young caregivers are going through, because while there are a
lot of similar themes and commonalities among caregivers of all ages,
when you're caregiving in your twenties and your thirties, you're
dealing with a lot of other life milestones and different
(21:11):
things that other caregivers can't relate to. You are starting
to self isolate because caregiving takes over. You're losing your friends,
You maybe had to put college or your career on pause.
Dating is obsolete. So the podcast has really just also
allowed me to speak to my experiences. It's been very cathartic.
(21:33):
I call it my grief journey now that my mom's
been passed away. I had my caregiving journey and now
I'm on my grief journey. So it's been a really
healing and cathartic means to be able to heal and
really just to be able to give back to other
young caregivers and help them feel seen and heard and
like they have a place to come to where they
(21:54):
can get information, they can get validation, and just feel
a little bit less alone.
Speaker 1 (22:01):
What kind of feedback and conversations do you have with
your followers. Are you hearing from a lot of people
in similar situations?
Speaker 6 (22:09):
Chris, Yeah, I hear from hundreds of people every day.
People send me messages saying that they either cared for
their grandmother or grandfather or they're currently taking care of somebody.
And it's really nice to see somebody online highlighting the
things that they do every day, because before my videos,
they felt like they were the only ones, like I
said earlier, on the planet taking care of a loved
(22:31):
one and it's really difficult, and it's just nice to
see somebody else doing what you do and going through
the same struggles that you do, because it's it's tough,
and I think, I mean, that wasn't my plan in
the beginning. My plan was in the beginning wasn't to
reach out to millions of caregivers and you know, be
(22:53):
a source of inspiration for people. I was just showing
what it is that I was doing on a daily basis,
and people just seem to enjoy it. So, you know,
I get I get feedback from caregivers. I get feedback
from younger people too, saying that they get inspired to
help out their grandfather or grandma or parents when they
get older. So it's really nice to get positive feedback.
(23:13):
You know, there's a lot of negative feedback too. With
posting my story online. There's a lot of people saying
that I'm only doing take I'm only taking care of
my grandmother for social media, which I think is the
funniest one to hear because people don't know like what
it is that goes on behind closed doors. They only
see a minute or two minutes of my life, and uh,
you know, in the beginning, it was really difficult to
(23:34):
hear that because it's like, how could you even think that?
But now that it's been some time, I can understand
if if you're randomly scrolling on TikTok or Instagram and
you see this guy taking care of his grandmother wearing
a mic, and you think, oh, he only does that
when the camera's on. When the camera's off, he's off
living his own life, when really, like I post and
(23:55):
I'm still at my grandmother's bedside, like you know, and
we're yeah, so, but I've come to realize that that's
just how the world is, and that's okay. And I
wish those people the best because if they were in
the same situation, they would understand what it is that
goes on behind closed doors.
Speaker 2 (24:12):
I'm just so impressed that you continue to post anyway.
I'm not sure I would have the courage to do
what you're doing and just keep sharing your story. Yeah,
what you were doing to give care is incredible, but
what you do to tell your story in the base
of that negativity is And.
Speaker 1 (24:28):
I think they're so right how lonely and isolating it
can be. And the internet is the source of a
lot of bad things in our society. But to be
able to build a community, be it through a podcast
or just online content, is a real service I think
to others, I'm curious about your professional development while you
were both Adrian, you taking care of your mom, Christy,
(24:51):
your grandmother. Did you have to put all your career
aspirations on hold? Were you able to do some I'm
kind of professional work so that you would stay at
least connected to your hopes and dreams in a way
for your own lives.
Speaker 6 (25:09):
I think I lucked out because my goal was to
make videos for a living, so I went to school
for visual media, and I guess it only makes sense to,
you know, document my life and make videos for the internet,
so you know, in twenty fourteen. It sounds it feels
weird for me to say, but I've always wanted to
be like a YouTuber and like making videos for the Internet.
(25:30):
And I was always fascinated with documenting my life and
creating little stories here and there. So I think, you know,
when I became a caregiver, it was only natural for
me to record what it is that I'm going through.
And I had no idea that you know, a lot
of people would gravitate to it. And I think it
worked out so I didn't have to necessarily put my
professional life on hold. I was able to build that
(25:51):
while also you know, having the responsibility of taking care
of my grandmother.
Speaker 1 (25:55):
That was incredibly serendipitous. What about what about you, Adrian,
in terms of, you know, what you were planning for
your own life.
Speaker 5 (26:04):
Yeah. So, like I said, I'm a bit of a
free spirit.
Speaker 3 (26:07):
So I was kind of hopping around into all of
these different career fields. I hadn't found a field that
I loved, and I was like wanting to climb the ranks.
And so when I moved back to Florida, I had
a nine to five job.
Speaker 5 (26:21):
I didn't love it.
Speaker 3 (26:23):
Another huge challenge that I was starting to face of
having a nine to five job and caregiving.
Speaker 5 (26:28):
It's virtually impossible.
Speaker 3 (26:29):
Doctor's appointments don't happen at seven pm, so it was
like taking multiple hours out of the day to take
my mom to doctor's appointments when she would end up
in the hospital, having to take time off work. So
for me, I was like, why don't I try to
start something virtually where I can work from anywhere? And
I started my own project management business, which I was
(26:52):
very apprehensive about because I was.
Speaker 5 (26:54):
Like, are you crazy?
Speaker 3 (26:54):
You're going to try to start a small business while
you're caring for your.
Speaker 5 (26:57):
Mom, Like you're out of your mind.
Speaker 3 (26:59):
But I'm an overachiever and I went for it and
it was one of the best things I could have
ever done.
Speaker 5 (27:04):
I was able to work virtually, so I.
Speaker 3 (27:06):
Would take as long as I had my laptop and
a Wi Fi connection. I said, my laptop saw the
inside of ers and hospitals more than most laptops probably did.
But it allowed me to continue to build a professional
career because what I.
Speaker 5 (27:20):
Would always tell myself was.
Speaker 3 (27:21):
That there was going to be a day that my
mom was no longer here and I needed something. I
needed something that I could continue to grow once she
was gone, which so many caregivers don't have that luxury.
Speaker 5 (27:33):
So many caregivers have to put.
Speaker 3 (27:34):
Their life on hold, and then when their loved ones gone,
they don't even know where to start. They don't know
where to turn to because for so many years they've
been out of their social circles, they've been out of
their professional circles. So I feel very blessed that it
all happened for a reason.
Speaker 1 (27:49):
And Cilly, I imagine that remote working and more flexibility
and the workplace is a really helpful development men for
people who find themselves in these situations.
Speaker 2 (28:03):
I think both remote work and part time like you
talked about, and finding just different ways to contribute and
find a way to do that in a way that
helps you grow and develop, and obviously that helps you
sustain yourself. We have a world of options now that
we didn't have twenty or thirty years ago, which maybe
creates some flexibility.
Speaker 1 (28:20):
I wanted to ask you all about adjusting to life
after you lost your mom and your grandmother, because I
imagine it's as big an adjustment as it is to
becoming a caregiver. Suddenly you find that you no longer
have the responsibilities that you were so focused on for
so long. Was that a difficult transition? Adrian? It sounds
(28:41):
like your small business was really helpful, But just in
terms of the emotional toll that took, not only are
you grieving someone your best friend, as you said, but
suddenly you're like, wait, my life has changed dramatically. The
structure I knew is suddenly gone.
Speaker 3 (28:59):
Yeah, it was only an interesting transition. After she passed away,
I think having to deal with grief, although I say
that I thought I was going to grieve my mom's
passing a lot more. But once she passed, I learned
about this term called anticipatory grief, and I recognized that
I was really grieving her for my entire caregiving journey.
(29:21):
So having the grief journey that I was on, with
the recognition that this person was no longer there, I
wasn't going to see her. I wasn't going to be
able to touch her, to talk to her, even though
she never talked back. I mean I talked her ear off,
performed Broadway reviews for her and her you know, in
her little apartment.
Speaker 5 (29:40):
That was huge.
Speaker 3 (29:41):
I also, at the time she passed, I had a
lot of things that were starting to happen. I met
my now husband, we got engaged, I have a step
daughter that came into my life, and I truly believe
my mom wanted to know that I was going to
be taken care of, and that's when she decided that
(30:01):
she could let go. And so it was very interesting
the transition because it's like, on the one hand, I
was letting go of my best friend and this person
who had meant the world to me and did so
much for me, and now I was all of a
sudden shifting and starting this entirely new life that I
had to put on hold for so many years. So
it was a really interesting transition, and I know it
(30:23):
was all to my mom.
Speaker 1 (30:25):
Chris. For you, you know, suddenly now you're how old
thirty thirty and you're like, WHOA, I can go out
and party or whatever it is. I mean, how have
you adjusted to your new normal?
Speaker 6 (30:39):
Well, I'm still adjusting, and I think i'll.
Speaker 1 (30:41):
Be again because it was so recent.
Speaker 6 (30:42):
Yeah, it happened a couple of weeks ago, So I'm
still adjusting. And it's interesting that you brought up anticipatory
grief or grieving. I think that makes so much sense
to me because at the funeral, I didn't feel of
course I was sad, but I didn't feel sadness in
the way that other people felt sadness. At the funeral,
I felt more so relief, and I because I've anticipated
(31:04):
this day for so long, and now that it's here,
I feel I feel relieved, not only for my grandmother
because she was in so much pain in the last
four days of her life, but I feel so much
relief for me and my mother, who was there for
every step of the way. And I think it's just
a it's such a relieving feeling to know my grandmother
is no longer feeling pain and that she doesn't have
(31:26):
to because she was guilty. You know, in the last
eight year she she hated people helping her out. She
was so independent her entire life. She was a teacher
for twenty years. She immigrated here to the Philippines by herself,
took all her children with her, and she was such
a strong and independent woman for most of her life.
And for her to have somebody by her side twenty
four to seven, it was something that she never really
(31:47):
got used to. So knowing that she doesn't have to
see me every day because she needs help. It's such
a relieving feeling. So I'm still in the you know,
in this transition. It's funny that you say, like I
get to go out and party, because that's every that's
what everybody assumes, like, Yeah, you get to go out
to New York and you don't have to go back
whenever you were since.
Speaker 1 (32:05):
Here from Las Vegas, so he doesn't have to come
to me.
Speaker 6 (32:09):
So but I don't I feel I don't know. I'm
still figuring things out. But I do think similar to
what you were saying about how your mom kind of
set you up, I feel like my grandmother set me up.
Because now I have this really large platform of people
who watch my videos. I can connect with so many
people across the world, and you know, I think I
(32:29):
just have so many opportunities in front of me now,
and I feel like it's my responsibility to be a
good steward of what happens now and all the whatever
happens to me financially. I feel responsible to be a
good steward of that. And because you know, I feel
like a fish in a fishbowl sometimes because you know,
so many people are watching what I do every day.
I do feel a responsibility to not let people down
(32:50):
and be irresponsible in this transition of my life.
Speaker 1 (32:54):
So that's great. And it's such a neglected space, you know,
and people need help and guidance, and I think you're
really filling a knee obviously, and Adrian with your podcast,
and of course Cilia with the important financial advice you're
giving people. What is the one thing you wish you
had known before becoming a caregiver?
Speaker 6 (33:16):
Oh, I wish I would have known that it's amazing
the things that you'll get used to, because at twenty
one twenty two, like a twenty one year old is
not thinking about changing their grandmother's soiled pads or soiled pampers,
or thinking about giving his grandmother a shower. But I
(33:38):
think it's incredible the things that you can get used to.
And I wish I also would have known how fruitful
this journey was going to be. I was able to
spend so much time with my grandmother and hear stories
that I don't think I've ever would have been able
to hear if I wasn't buy er side. I was
able to like have breakfast, lunch, and dinner for the
last eight years with my grandmother, and I think it's
(34:00):
I feel like I won't meet a lot of people
that are able to say that, So I think I
wish I would have known how fruitful. But also at
the same time, if you would have told me that
at twenty two, I don't think I would have believed anybody.
Speaker 1 (34:11):
This young man is an angel? Can I just say, like, what?
Who are you? What about you? Adrian?
Speaker 3 (34:19):
I wish I would have known everything, because there's so
much like the financial aspect, the social, the emotional navigating
just this crazy healthcare system of ours.
Speaker 1 (34:30):
Must that must be very frustrating.
Speaker 3 (34:33):
Yeah, I mean it's literally like you feel like you're
on this deserted island just trying to figure everything out
for yourself. And I wish I would have known to
self identify as a caregiver sooner. I wish I would
have understood what a caregiver was and self identified because
I feel like I would have tried to seek out
(34:54):
resources much earlier in my journey because resources exist, but
unless you you know they're out there, you're never going
to go looking for them. So I wish I would
have known that. I wish I would have known just
how hard it was going to be. I think initially
I was like, Okay, I'm going to take care of
my mom. But I think until you're in the depths
(35:14):
and the throes of it, and there's good days and
bad days, and you're on these crazy like highs and
then these insane lows and this constant emotional roller coaster,
and I say that I developed anxiety, you know, as
a byproduct of my care journey. I just wish I
would have known how to just work through the highs
and lows better. And I wish I would have worked
(35:35):
on myself more during that period to help just kind
of not.
Speaker 1 (35:40):
Take care of yourself so you could take care of
your mom exactly. Yeah, I'm sure that a lot of
caregivers neglect their own health and well being. And that's
a really terrible situation because you have to put your own,
you know, mask on first before you help somebody else.
Is there a specific conversation, and because I think this
(36:01):
will be helpful to everyone listening, that you wish you
would had with your grandmother and your mom before you
found so you really truly understood their wishes or do
you feel that you understood without that conversation if you
had to go back.
Speaker 3 (36:19):
I did not know any of my mom's wishes, and
that puts such a weight on my shoulders because by
the time I was having to make these massive executive
decisions for her, she was not lucid enough to be
able to truly communicate. I didn't know if my mom
wanted to be buried or cremated. I didn't know if
my mom wanted to go in hospice. Like I made
(36:41):
the decision to put her in hospice, I made the
decision to send her into hospice inpatient in a hospital
during COVID in the hopes she would get better. My
mom maybe would have never wanted to go into a
hospital and just would have wanted to stay at home,
and she died in the hospital. So having those cons
is crucial. I think specifically for us at.
Speaker 5 (37:03):
A younger age. You alluded to it earlier. I think
you did.
Speaker 3 (37:07):
It's not pretty conversations. No one wants to sit around
the dinner table and have a conversation about mom.
Speaker 5 (37:14):
Dad, what are your wishes? What do you want?
Speaker 3 (37:18):
And I think it's so essential, and that's probably the
biggest piece of advice I would give anyone at any age.
I mean, I was twenty nine. I didn't even think
about having these conversations. I was like, oh, that's fine.
My mom's going to live to be in her eighties.
We don't have to have these conversations for another twenty years.
Speaker 1 (37:35):
I think it's really an act of love actually to
have these conversations. I remember when my dad died and
I was walking out of the hospital with my brother
and I said, Johnny in my dad worked in newspapers,
and I said, Johnny, we have to write Dad's obituary.
And he said, oh, Katie, he's already written it.
Speaker 3 (37:53):
Oh wow.
Speaker 1 (37:53):
And I thought that was like such a There was
so much kindness for him to take care of it.
So I think you should really look at it as
taking care of each other and a part of the process.
Do you wish you had had any conversation with your grandmother?
Speaker 6 (38:09):
I mean I want to say yes, but I don't
even know what we would what kind of conversation.
Speaker 1 (38:13):
Sounds like you had a lot of conversations.
Speaker 6 (38:15):
I mean, yeah, we did. None of them had anything
to do with me helping her out, but I.
Speaker 1 (38:20):
Hope it wrote down those stories back.
Speaker 6 (38:23):
Well, yeah, a lot of them are recorded, so good.
I'm so glad you know. And that's another thing I'll
get to your question. But I think an amazing thing
about the videos that I made at the funeral. A
lot of my cousins were telling me whenever I miss
our grandmother, I can go through your page and I
could get a glimpse of how she was in all
of her teachings. So I think that's an amazing thing
of you know, documenting life, whether it's on the Internet
(38:44):
or not. I think it's important to document your life
just just to have something to look back on. But
as far as the conversation goes, I mean, I feel
I still feel really young now and at twenty two
I had no I don't I don't even know what
we could have discussed back then to make the the
next eight years a lot easier.
Speaker 3 (39:02):
Uh.
Speaker 6 (39:03):
You know, It's funny my parents and I joke now
they say just throw me in a home, and I
don't think. I don't think I could grant their wish
of just throwing them in a home and just leaving
it at that. I know that's, you know, what they
wish for, but.
Speaker 1 (39:16):
Well maybe they're just kidding. Well, I think when push
comes to that, they may change their minds.
Speaker 6 (39:23):
Yeah, but I don't Yeah, I don't know what we
could have discussed to make it different. I think I think,
you know, we we we took it on a day
at a time, and I think, uh, it was such
a huge responsibility that I think just going through the
motions and figuring it out as I went was the
best way for us to go about it.
Speaker 1 (39:38):
So, so, Celia and closing, what kind of advice would
you give? And I guess maybe I'll open it up
to everybody, to people listening to this about the future
and if they find themselves in a situation of caring
for an elderly family member.
Speaker 2 (40:00):
This is a hard space to give advice. But I
think the couple things I feel like I've gotten from
this conversation. One is having the conversation right, sort of
thinking yourself about what you might want for yourself and
what you want with your family and being willing to
step into that dialogue is maybe thing one.
Speaker 1 (40:16):
Should you write it down? By the way, it's because well,
there are all sorts of legal documents, right, what is
it called when you have a proxy power of attorney,
et cetera. I mean you probably should have some, but
that's not your area of expertise.
Speaker 2 (40:30):
I'm not a lawyer, but there is a lot of
advice about going to either a financial advisor or an
attorney as you start to kind of think about and
plan for these sorts of things. But maybe if I
would actually end with just one thing, the idea that
the life we live today isn't promised to us, and
a lot of our parents are living, or our grandparents
or whoever it is that we love, none of it's
(40:51):
promised to us. And to be spending a little bit
of time thinking about putting something aside and planning for
insurance on the one hand, and then spending time with
you on the other hand. I mean, that's the thing
you guys have me thinking about, is like, who am
I spending time with them? And I'm putting enough time
in the right places because that's what I'm taking from
your stories.
Speaker 5 (41:10):
Yeah.
Speaker 3 (41:10):
I always say that one of the biggest silver linings
in falling into caregiving is I would have never had
the time that I had with my mom should it
have not been for caregiving. And maybe that quality time
looked very different than what it did.
Speaker 5 (41:26):
Before she got sick, but it was still quality time.
Speaker 3 (41:30):
And I will never regret any of that, and having
that and just recognizing that no one lives forever, saying
I love you, living without regrets. Having the conversations before
they're too late, I think is incredibly essential as well.
And I think preparing for caregiving ahead of time is
so important. Like I think of so many things like
(41:52):
the hospice, having to make the executive decision to put
my mom in hospice, so now here my mom is,
I don't know how much longer she has left. If
I would have pre planned and known, okay, when we
get to this point, hospice is going to be done,
I know who to contact, this is everything involved, it
would have alleviated a lot of that emotional stress and
burden that I was already experiencing. So preparing to care,
(42:15):
I say this on my podcast. It's my biggest piece
of advice to young caregivers.
Speaker 5 (42:19):
Prepare to care.
Speaker 3 (42:20):
That's probably one of the biggest things that I would
recommend to anyone, anyone at any age, no matter who
you're caring for, even your spouse. People ask me, now, okay,
so you went through all this with your mom, do
you have a living will in place?
Speaker 5 (42:33):
Like does your husband know your wishes, and it's crazy
because I don't have a living will in place. My
husband doesn't know my wishes.
Speaker 3 (42:41):
So it gets you thinking, and I'm going to go
back home and have this conversation.
Speaker 1 (42:46):
What about you? Chris? Any advice?
Speaker 6 (42:49):
It's tough because I think, like I said earlier, there's
nothing that anybody could have told me at twenty two
to prepare me for the next eight years of my life.
I do think it's important to have those important conversations.
I'm having them with my parents now of Okay, do
you really want to go to a home? Okay, what
does that look like? And even then, even when you
do have those important conversations, it's difficult to prepare for
(43:13):
that emotionally, like you just you don't know. Like people
would always ask me, so, what's going to happen, you know,
when you're no longer a caregiver. I would always answer,
I have no idea, and it's difficult. I would sit
at night and pray and ask how how do I
prepare for something like that? And I never got an
answer because I don't think it's something that you can
prepare for. You could have logistics setup, but emotionally you
(43:35):
won't be prepared to see a loved one decline in
a way that they might.
Speaker 1 (43:39):
It sounds to me that for both of you having
a community is really important, and Adrian, maybe it would
have been helpful for you to find a community earlier,
because I do think talking to people who are going
through similar experiences can be so comforting and make you
(44:00):
feel less alone. So whether it's watching videos and being
a part of a social media or social platform community,
being part of a podcast community. I'm sure there are
lots of support groups for caregivers, and we were talking
before we came on stage that there are a lot
of resources. You just have to go out and find
(44:22):
them and utilize them. But I would imagine just being
able to talk to other people about your experience and
bitching to them about this, that and the other thing,
or it could be really therapeutic.
Speaker 3 (44:35):
We were having a conversation earlier, and it's interesting because
Chris was talking about taking on the responsibility of caring
for his grandmother and at first he almost said burden.
I saw like the be and I was like, you
were going to say burden, weren't you. So it's interesting
because it's only if you don't if you've been through it,
(44:55):
Like nobody else knows what this is like unless you've
been through it, and talking to other caregivers, even talking
to Chris, it's so validating, like you feel seen, you
feel heard, you feel less alone. So having that community
is so essential. That's why I have the podcast. I
started a private Facebook group for young caregivers where it's
a safe space to come in to bitch, to vent
(45:18):
about things that are going on, and know that everyone
in there can one hundred percent relate and understand.
Speaker 5 (45:23):
It's almost like a huge weight is lifted off of
your shoulders.
Speaker 3 (45:26):
I call people that I know young caregivers the set
of friends that I never thought I would have, Like
you have your childhood friends, your mom friends, but I
feel like I have these caregiver friends now that will
understand me like none of my friends ever will.
Speaker 1 (45:41):
Well, Chris and Adrian, I have to say, it's been
a real honor to talk to to such compassionate, selfless people.
Thank you both so much, and Celia, thank you so
much for your sage, wisdom and advice and help in
helping people navigate what can be a very trying situation emotionally, financially,
(46:05):
and in sort of all ways, so I really appreciate it.
Thank you so much for being on Next Question. You
guys were awesome. Thank you, Thanks for listening everyone. If
(46:25):
you have a question for me, a subject you want
us to cover, or you want to share your thoughts
about how you navigate this crazy world and reach out,
you can leave a short message at six oh nine
five one two five to five five, or you can
send me a DM on Instagram. I would love to
hear from you. Next Question is a production of iHeartMedia
(46:47):
and Katy Kurrk Media. The executive producers are Meet Kitty
Kurk and Courtin Litz. Our supervising producer is Ryan Marx,
and our producers are Adriana Fazio and Meredith Barnes. Julian
Weller composed art theme music. For more information about today's episode,
or to sign up for my newsletter wake Up Call,
(47:09):
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com slash bank Capital one NA member FDIC. Hi everyone,
(00:21):
I'm Katie Kuric, and this is Next Question. Welcome everyone
to this live taping of Next Question with me Katie Kuric.
I am delighted to bring you this conversation on the
cost of caregiving in partnership with my friends at Capital
(00:44):
One here at the Capitol One Cafe at Harold Square
in New York City. I'll be introducing you to the
panel in just a moment, but first a bit of
why we're actually here tonight. Roughly ten thousand baby boomers
will turn sixty five every day for the next decade
or so and are likely to enjoy longer lives, living
(01:06):
to eighty ninety even beyond fingers crossed. That's a lot
of retirement years, and unfortunately, not all of those years
are lived independently within home and assisted living. Care costs skyrocketing,
taking care of aging relatives is falling more and more
to their own loved ones. It's not easy. In fact,
(01:30):
it can be overwhelming. So we're going to talk about
how you can actually be prepared, whether you're a caregiver
or you're the person being cared for. We're also going
to talk about the unexpected joy and meaning these situations
can actually bring about. So tonight, our guests are Celia
(01:51):
Edwards Karum. She is the president of Retail Banking at
Capital One. She has championed a people first approach to
banking to act as a partner to customers whatever stage
of life they happen to be in. Adrianne Glessman is
host of the Young Life Interrupted podcast. It's a weekly
(02:11):
dose of community where guests and hosts share personal stories, insights,
and conversations with other caregivers. And finally, Chris Fusalid has
built quite the community via social media. He's very active
on TikTok, where his videos about caring for his grandmother
(02:32):
go out to not only two point four million subscribers,
but get millions of views. And I'm very jealous of that, Chris.
But let's begin the conversation with the financial challenges Celia
of being a caregiver. So I know this situation is
affecting more people than ever, can you kick things off
(02:55):
by outlining the role you see caregiving playing in people's
financial lives.
Speaker 2 (03:01):
I love this question, and caregiving is such a broad topic.
We're going to mostly talk today about caregiving for the elderly,
people who we helped raise us maybe who we are
now going back to help take care of them. We also, though,
sometimes think about caregiving in the context of kids, and
one of the things we're seeing in our customers and
really learning about from people is this notion of the
(03:22):
Sandwich generation, people who find themselves giving care to elder
parents and giving care to kids and all of the
just the overwhelm that can come with a situation like that.
I think from a financial perspective, caring for the elderly
is probably something that many of us will have to
contend with. And so in that same way that we
(03:43):
might plan for retirement, or we might plan for a
child to be able to go to college, we might
save for those things. Saving for what it might mean
to have to care for someone is something that I
think is a you know, part of prudent financial well
being and financial health.
Speaker 1 (03:58):
How do you do that though? How do you you know?
What are the actual practical steps Celia people can take
when talking about the future and being and either a
caregiving role or being cared for.
Speaker 2 (04:13):
Well, I'll talk a little bit about how Capital One
helps with this, but I actually think lots of people
across the banking industry are really thinking about how do
we help meet customers where they are and help with
this caregiving need. Here at Capital One, one of the
things we focus on is a program called Money in Life.
And really the purpose of Money in Life is to
have a conversation with you to understand what your goals are,
(04:35):
what's going on in your family, what do you think
might be going on ten, twenty thirty years down the road,
and how do you start to build a plan for yourself.
It's not about your advisor telling you what to do.
It's about that person meeting you where you are and
helping you develop a set of goals and a plan
to then work towards those goals in the same way
that you might work against any other goal. But really
(04:56):
having that sort of shepherd in advice to help you
get structured.
Speaker 1 (05:00):
Kind of motivate you, because I imagine a lot of
people really feel uncomfortable having this conversation, like honey, girls
my daughters when I'm old and incapacitated, I'd really like
this and that I mean, it's really kind of an awkward,
it's kind of depressing, and people just don't really want
(05:20):
to bring those things up and they really need to.
Are there ways that you can cut conversation starters or
things people can do to make it to break the ice?
Speaker 2 (05:31):
Yeah, it's It's funny. Everything about money can be a
little bit anxiety producing, and you add to it this
notion of forecasting to some time in the future where
you might not be as healthy as you want to be.
I think two of the things that we've seen work
and that I've really learned from this kind of money
and life coaching program are around, you know, opening those
(05:52):
conversations with your kids or your niece or nephew, whoever
it is in your family that is the right person
to have that conversation with an honest let's talk about
the future and what do you want for the future,
and what do I want and making that sort of
more of a conversation. It might be a little bit
of a hard topic, but there's no substitute for waiting
into it.
Speaker 1 (06:11):
We want to talk to our caregivers in a moment,
But do you find that a lot of companies. It
seems to me this issue has really been brought to
the forefront. We've been talking hearing about the Sandwich generation
for a while, but I think as we talked about
more and more people are finding themselves in this situation.
Do you think other companies, including Capital One, are embracing
(06:34):
this issue, are thinking about it in terms of helping
their employees in general, And just as somebody who's in
the industry, what are you seeing not only in banking
but in different companies, especially because the population is aging, right,
It's total right now.
Speaker 2 (06:51):
This is something that I think you said at the
beginning that everyone's going to have to contend with at
some point or another. In our associate group, we have
what we call affinity groups that we set up for
different groups of associates to come together on a topic.
In twenty twenty or maybe twenty twenty one, we launched
something called and Family at Capitol One, which is really
about supporting associates who are going through the caregiving moment,
(07:14):
and whether that caregiving is for someone who is aging
or someone who is sick, or if it's for children,
whatever the nature of caregiving happens to be actually just
finding a group where you can have like minded conversation
about how hard this is, about you feeling exhausted, sometimes
about feeling guilty for feeling exhausted. There's a lot of
(07:36):
complex emotion and just knowing that you're not in it
alone has been a really important part for our associates
to come together in that way and then to feel
supported by a company who gives them space to give
that connection and really start to find a place for
themselves in the company.
Speaker 1 (07:52):
And a lot of loneliness and social isolation. Adrian, I
know you started caring for your mom Hetty when you
were twenty nine years old. Can you describe what was
happening in your world and why you found yourself in
this position?
Speaker 3 (08:08):
So my world was here in New York City, my mom.
I'm originally from Florida, so my mom was all the
way in Florida and I was twenty nine. I always
like to say I was living like the sex in
the city, you know, dreams, a single girl in the city.
Speaker 1 (08:22):
True, here are you Carrie, Miranda or Samantha.
Speaker 4 (08:24):
I won't say, I won't say Samantha, but you know
I was single, and I was trying to figure out
my career path and just having a great time with
my friends.
Speaker 3 (08:37):
So those years are kind of selfish, so I was
being very selfish in everything I was doing. Now, I'm
an only child of divorce parents, and my mom and
I are very close, so I always knew that I
was going to have to care for her one day,
but in my mind, it wasn't going to happen for
another thirty years, when I was probably and had children
(09:01):
and was very established and had already hit all of
those milestones. So my mom was diagnosed with multiple system atrophy,
which is a neurodegenerative rare disease, and at first, seemingly
it seemed like everything was okay. I was able to
manage her care from a distance, but then when I
was flying home to visit, I was starting to notice
(09:22):
that things were off, and I said, Okay, I'm going
to have to start stepping in a little bit more.
There were times I was up here and I had
to fly home at the drop of a hat book
a one way ticket because my mom was in the
hospital and there was nobody to be with her, and
I wasn't going to leave her alone in the hospital
I needed to advocate for her, so as her disease
(09:43):
started to progress, I finally decided this long distance caregiving
it's just way too tough, the anxiety that I was
going through every single day if she wouldn't pick up.
Speaker 5 (09:53):
The phone, not knowing what was going on, trying to.
Speaker 3 (09:56):
Have a life up here, balance this whole other hidden
life because it wasn't something I say hidden because I
didn't talk about it. I didn't talk about to my
friends everything I was doing with my mom because they
wouldn't understand.
Speaker 5 (10:09):
Nobody had gone through this before. So I finally made.
Speaker 3 (10:12):
The decision in twenty fifteen that I needed to move
back home because.
Speaker 5 (10:17):
It was too much to care for her at a distance.
Speaker 3 (10:20):
And moved back home, which provided a whole nother facet
of caregiving. Even though it wasn't long distance, being right
there has its own set of challenges, and really it
turned my world upside down. I never in a million
years thought I was going to move back to Florida,
where I was born and raised. I thought I would
live in New York forever or go live abroad. I'm
(10:40):
such a free spirit. I kind of went where the
wind would take me. But here, I was back in
this role to care for my mom. And as hard
as it was for me to leave New York City
and give up this amazing city, this life that I
had built for myself, all of my friends, I had
just got offered my dream job working in travel dr
(11:01):
and I had to just give it all up and
make the decision to move back because I knew that,
just like my mom had cared for me my entire
life and was an incredible mom, that it was my
turn to care for her.
Speaker 5 (11:14):
It just came way too soon.
Speaker 1 (11:17):
Chris. Before we talk about how you all have shared
your experiences, tell me how you wound up in your situation.
Speaker 6 (11:24):
Yeah, so, about eight years ago, my grandmother, my grandmother
was no longer able to get out of bed. It
was just like all of a sudden woke up, couldn't
move anymore kind of thing. And you know, my family
and I had to have a conversation about whether we
were going to take my grandmother to a facility or
would we hire a full time caregiver to stay at
(11:45):
the house and be with her. Twenty four to seven
and I was just about to graduate college. I had
one semester left. I didn't have any job opportunities lined up,
So I said, you know, my grandmother took care of
me when I was young, so it only makes sense
for me to step up and be responsible. So I
decided to be our caregiver, full time caregiver, and you know,
(12:06):
we did that for eight years, and in the last
three to four years of her life, I decided to
document my life on the Internet and show people what
it's like to be a young caregiver, and a lot
of people gravitated towards it. I got messages from millions
of other young caregivers out there saying that they see
their grandmother or their grandfather through my grandmother, and it's
(12:29):
been a life changing experiences. It's really nice to know
that you're not alone in this really tough and isolating experience.
You know, if you didn't have the Internet, then you
think you're the only one on the planet taking care of,
you know, an elder. So it's been a life changing experience.
And unfortunately, my grandmother passed away a couple of weeks ago,
(12:52):
and it's been tough, but it's been also relieving knowing
that my grandmother lived till ninety seven. You know, she
lived a great life, and I can confidently say that
the last eight years of her life, I don't. I mean,
I wouldn't say that the best because obviously people want
to be up and about but like, I think we
gave her the best life that we could have, and
I have no regrets about it.
Speaker 1 (13:12):
Both of you are so inspiring and made a lot
of sacrifices, and I don't think a lot of young
people would do that. Did you ever, Waiver, did you
ever resent your mom or your grandmother because you both
had to make a lot of sacrifices. I mean, you're
a young man, what twenty two years old, and suddenly
you find yourself as your grandmother's primary caregiver.
Speaker 6 (13:34):
Yeah. I mean we actually just talked about this backstage.
It's it's really it's tough to put your life on
hold as a young person and to give your life
to somebody else. But I wouldn't I wouldn't change it
for the world. And obviously there's a lot of ups
and downs, and there's a lot of dark moments, but
I think looking back at the bigger picture and seeing
all that we've been able to do with my grandmother
(13:54):
and all the things that I've been able to learn
from my grandmother. You know, I wouldn't. I wouldn't change
it for a thing. And I think it is it's
difficult for young people to just say, hey, I'm going
to put my life on pause. It's time to help
out whoever. But yeah, I would. I wouldn't change it
for the world. And I think it's an experience that
I'll never forget, and it's a chapter that I'll hold
close to me and I think, you know, I'll be
(14:15):
learning from that time forever.
Speaker 5 (14:18):
So what about you, Adrian, Well, I'm not going to
sugarcoat it. There was a lot of resentment.
Speaker 3 (14:24):
I mean, like I mentioned, I had to pick up
my life here and just drop everything. I packed up
three boxes and ship them to Florida, something I never
thought that I would do. I was a huge traveler, backpacker,
my friend and I would take trips every year.
Speaker 5 (14:41):
Had to put that on pause.
Speaker 3 (14:43):
So, yeah, there was resentment, and I think there were
many days when I was at some of my darkest
days of caregiving. I was at my worst and I
resented having to take care of my mom. I was
watching all of my friends get married and have kids
and do all of these amazing things. And here I
was caring for my mom and like changing her diaper
(15:06):
and bathing her and managing her medications and her care
and having to make all of these extremely responsible executive
decisions on behalf of my mom. I had a lot
of resentment that was at the beginning, and then I
had to do a lot of growth, and I had
to do a complete mindset change around where I was
(15:30):
and why this was happening, Because I would always be like, God,
why is this happening to me? What did I do
in this lifetime to have this happen to me now
and not years from now? Like what did I do?
I was a straight A student, like I was a
good girl? Like what happened?
Speaker 5 (15:45):
So I had to do a complete mindset shift.
Speaker 3 (15:48):
And once I started shifting my mindset and started focusing
on the fact that I'm able to help care for
my mom, and I'm able to have these years with her.
Speaker 5 (15:59):
And I'm able to give her the joy of having
her daughter, her best friend by her side through some
of the hardest years of her life, that really.
Speaker 3 (16:10):
Flipped the script for me. And it wasn't so much resentment.
It was more kind of like Chris was saying, for me,
it was an honor. When my mom was transitioning, I
told her, I said, Mom, caring for you is and
always will be the highest honor of my entire life.
Speaker 1 (16:27):
Can I adopt both of you? I mean, seriously, you're
amazing and remarkable. Did you ever have a respite though?
Like would you be able to get a break? And
I wanted to ask Celia too about you know, is
the cost of hiring professional caregivers so prohibitively expensive for
(16:48):
a lot of families that many children or grandsons find
themselves in this situation.
Speaker 5 (16:54):
Yeah, I want to answer first I can speak to
that a little bit.
Speaker 3 (16:57):
So unlike Chris, who was a full time caregiver, my
mom actually lived in an assisted living facility, And we
were actually talking about this a bit earlier.
Speaker 5 (17:05):
And it plays into the financial aspect that.
Speaker 3 (17:07):
The only reason that we could afford for my mom
to live in an alf because costs are astronomical, is
that when she was working with our financial advisor, she
started a long term care policy. And if it weren't
for that, I would have been in a very different situation.
I wouldn't have been able to afford along with my
(17:30):
mom's pension and social Security, not only the cost of
her living in an assisted living facility, but as her
disease progressed, she needed extra full time aids, so I
had to hire other full time aids. Mind you, I
was there every single day from three pm until I
put her in bed, seven days a week. But my
(17:50):
story would have been very different if my mom hadn't
been fortunate enough to make some smart financial choices early on.
Speaker 2 (18:00):
This story really resonates with me, and I think one
of the things that Katie said early on is that
people are coming from all different walks of life, all
different financial situations, and maybe most importantly, different levels of
knowledge about how these things might manifest and what kinds
of things you can do. From a planning perspective. Insurance
is one, savings is another. But how many of us
(18:20):
don't actually know to think about that or don't know
who to ask. And I think this is one of
the places where banking as an industry. But then also
I think there are a lot of resources in the
caregiving space that can start to guide people on how
how do you get prepared? How do you think about
some of these tools that you might use? And I
think you said this earlier both like you as the
person who may need care later on, like what kinds
(18:42):
of choices can we make? But then also for those
of us who you know have parents who are healthy now,
I know one of the things I'm often thinking about is, well,
they're healthy today, but how set up are we for
what the next five or ten or fifteen years might
look like? And are their choices you know I should
be making differently to plan for the just in case.
Speaker 1 (19:00):
Can you talk about Asia and your podcast and how
it started and how it gave you a lot of
comfort and support during this period, just as Chris's followers have.
Speaker 3 (19:12):
Yeah, so I always had the idea that I wanted
to start a podcast. I falling into caregiving at a
young age, I realized that the younger generation of caregivers
is such an underserved segment of the whole caregiver community.
When I fell into caregiving, I didn't even know what
the word caregiver was. I didn't self identify as a caregiver.
(19:34):
I self identified as, Oh, I'm an only child, and
this is my mom, and this is what I always
thought I was going to have to do for her.
So I always knew I wanted to start a podcast.
During caregiving, it was just too much. So after my
mom passed away, I said, Okay, I need to kind
of fuel a lot of this energy and time that
(19:54):
I have now into something to give back to other
young caregivers. So the Young Life Interrupted podcast came to be.
I released the first episode on the anniversary of my
mom's passing as a bit of a tribute to her,
and the whole point of the podcast is really to
reach young caregivers to.
Speaker 5 (20:14):
Let them know that they're not alone.
Speaker 3 (20:16):
Like Chris and I were talking earlier, it's a very
isolating experience when you fall into caregiving at a young
age and you literally think that there's no one in
the entire world going through the same thing that you are,
because your friends aren't going through it, you haven't heard
of other people going through it. It's not like when
you're a parent and you can turn to your mom
friends or your dad friends and you can ask advice.
(20:39):
So the podcast really looks to bring different caregivers from
all walks of life, so young caregivers caring for a spouse,
a parent, a grandparent.
Speaker 5 (20:48):
A sibling.
Speaker 3 (20:49):
On the podcast, we have open conversations and a lot
of them are geared towards the topics that we as
young caregivers are going through, because while there are a
lot of similar themes and commonalities among caregivers of all ages,
when you're caregiving in your twenties and your thirties, you're
dealing with a lot of other life milestones and different
(21:11):
things that other caregivers can't relate to. You are starting
to self isolate because caregiving takes over. You're losing your friends,
You maybe had to put college or your career on pause.
Dating is obsolete. So the podcast has really just also
allowed me to speak to my experiences. It's been very cathartic.
(21:33):
I call it my grief journey now that my mom's
been passed away. I had my caregiving journey and now
I'm on my grief journey. So it's been a really
healing and cathartic means to be able to heal and
really just to be able to give back to other
young caregivers and help them feel seen and heard and
like they have a place to come to where they
(21:54):
can get information, they can get validation, and just feel
a little bit less alone.
Speaker 1 (22:01):
What kind of feedback and conversations do you have with
your followers. Are you hearing from a lot of people
in similar situations?
Speaker 6 (22:09):
Chris, Yeah, I hear from hundreds of people every day.
People send me messages saying that they either cared for
their grandmother or grandfather or they're currently taking care of somebody.
And it's really nice to see somebody online highlighting the
things that they do every day, because before my videos,
they felt like they were the only ones, like I
said earlier, on the planet taking care of a loved
(22:31):
one and it's really difficult, and it's just nice to
see somebody else doing what you do and going through
the same struggles that you do, because it's it's tough,
and I think, I mean, that wasn't my plan in
the beginning. My plan was in the beginning wasn't to
reach out to millions of caregivers and you know, be
(22:53):
a source of inspiration for people. I was just showing
what it is that I was doing on a daily basis,
and people just seem to enjoy it. So, you know,
I get I get feedback from caregivers. I get feedback
from younger people too, saying that they get inspired to
help out their grandfather or grandma or parents when they
get older. So it's really nice to get positive feedback.
(23:13):
You know, there's a lot of negative feedback too. With
posting my story online. There's a lot of people saying
that I'm only doing take I'm only taking care of
my grandmother for social media, which I think is the
funniest one to hear because people don't know like what
it is that goes on behind closed doors. They only
see a minute or two minutes of my life, and uh,
you know, in the beginning, it was really difficult to
(23:34):
hear that because it's like, how could you even think that?
But now that it's been some time, I can understand
if if you're randomly scrolling on TikTok or Instagram and
you see this guy taking care of his grandmother wearing
a mic, and you think, oh, he only does that
when the camera's on. When the camera's off, he's off
living his own life, when really, like I post and
(23:55):
I'm still at my grandmother's bedside, like you know, and
we're yeah, so, but I've come to realize that that's
just how the world is, and that's okay. And I
wish those people the best because if they were in
the same situation, they would understand what it is that
goes on behind closed doors.
Speaker 2 (24:12):
I'm just so impressed that you continue to post anyway.
I'm not sure I would have the courage to do
what you're doing and just keep sharing your story. Yeah,
what you were doing to give care is incredible, but
what you do to tell your story in the base
of that negativity is And.
Speaker 1 (24:28):
I think they're so right how lonely and isolating it
can be. And the internet is the source of a
lot of bad things in our society. But to be
able to build a community, be it through a podcast
or just online content, is a real service I think
to others, I'm curious about your professional development while you
were both Adrian, you taking care of your mom, Christy,
(24:51):
your grandmother. Did you have to put all your career
aspirations on hold? Were you able to do some I'm
kind of professional work so that you would stay at
least connected to your hopes and dreams in a way
for your own lives.
Speaker 6 (25:09):
I think I lucked out because my goal was to
make videos for a living, so I went to school
for visual media, and I guess it only makes sense to,
you know, document my life and make videos for the internet,
so you know, in twenty fourteen. It sounds it feels
weird for me to say, but I've always wanted to
be like a YouTuber and like making videos for the Internet.
(25:30):
And I was always fascinated with documenting my life and
creating little stories here and there. So I think, you know,
when I became a caregiver, it was only natural for
me to record what it is that I'm going through.
And I had no idea that you know, a lot
of people would gravitate to it. And I think it
worked out so I didn't have to necessarily put my
professional life on hold. I was able to build that
(25:51):
while also you know, having the responsibility of taking care
of my grandmother.
Speaker 1 (25:55):
That was incredibly serendipitous. What about what about you, Adrian,
in terms of, you know, what you were planning for
your own life.
Speaker 5 (26:04):
Yeah. So, like I said, I'm a bit of a
free spirit.
Speaker 3 (26:07):
So I was kind of hopping around into all of
these different career fields. I hadn't found a field that
I loved, and I was like wanting to climb the ranks.
And so when I moved back to Florida, I had
a nine to five job.
Speaker 5 (26:21):
I didn't love it.
Speaker 3 (26:23):
Another huge challenge that I was starting to face of
having a nine to five job and caregiving.
Speaker 5 (26:28):
It's virtually impossible.
Speaker 3 (26:29):
Doctor's appointments don't happen at seven pm, so it was
like taking multiple hours out of the day to take
my mom to doctor's appointments when she would end up
in the hospital, having to take time off work. So
for me, I was like, why don't I try to
start something virtually where I can work from anywhere? And
I started my own project management business, which I was
(26:52):
very apprehensive about because I was.
Speaker 5 (26:54):
Like, are you crazy?
Speaker 3 (26:54):
You're going to try to start a small business while
you're caring for your.
Speaker 5 (26:57):
Mom, Like you're out of your mind.
Speaker 3 (26:59):
But I'm an overachiever and I went for it and
it was one of the best things I could have
ever done.
Speaker 5 (27:04):
I was able to work virtually, so I.
Speaker 3 (27:06):
Would take as long as I had my laptop and
a Wi Fi connection. I said, my laptop saw the
inside of ers and hospitals more than most laptops probably did.
But it allowed me to continue to build a professional
career because what I.
Speaker 5 (27:20):
Would always tell myself was.
Speaker 3 (27:21):
That there was going to be a day that my
mom was no longer here and I needed something. I
needed something that I could continue to grow once she
was gone, which so many caregivers don't have that luxury.
Speaker 5 (27:33):
So many caregivers have to put.
Speaker 3 (27:34):
Their life on hold, and then when their loved ones gone,
they don't even know where to start. They don't know
where to turn to because for so many years they've
been out of their social circles, they've been out of
their professional circles. So I feel very blessed that it
all happened for a reason.
Speaker 1 (27:49):
And Cilly, I imagine that remote working and more flexibility
and the workplace is a really helpful development men for
people who find themselves in these situations.
Speaker 2 (28:03):
I think both remote work and part time like you
talked about, and finding just different ways to contribute and
find a way to do that in a way that
helps you grow and develop, and obviously that helps you
sustain yourself. We have a world of options now that
we didn't have twenty or thirty years ago, which maybe
creates some flexibility.
Speaker 1 (28:20):
I wanted to ask you all about adjusting to life
after you lost your mom and your grandmother, because I
imagine it's as big an adjustment as it is to
becoming a caregiver. Suddenly you find that you no longer
have the responsibilities that you were so focused on for
so long. Was that a difficult transition? Adrian? It sounds
(28:41):
like your small business was really helpful, But just in
terms of the emotional toll that took, not only are
you grieving someone your best friend, as you said, but
suddenly you're like, wait, my life has changed dramatically. The
structure I knew is suddenly gone.
Speaker 3 (28:59):
Yeah, it was only an interesting transition. After she passed away,
I think having to deal with grief, although I say
that I thought I was going to grieve my mom's
passing a lot more. But once she passed, I learned
about this term called anticipatory grief, and I recognized that
I was really grieving her for my entire caregiving journey.
(29:21):
So having the grief journey that I was on, with
the recognition that this person was no longer there, I
wasn't going to see her. I wasn't going to be
able to touch her, to talk to her, even though
she never talked back. I mean I talked her ear off,
performed Broadway reviews for her and her you know, in
her little apartment.
Speaker 5 (29:40):
That was huge.
Speaker 3 (29:41):
I also, at the time she passed, I had a
lot of things that were starting to happen. I met
my now husband, we got engaged, I have a step
daughter that came into my life, and I truly believe
my mom wanted to know that I was going to
be taken care of, and that's when she decided that
(30:01):
she could let go. And so it was very interesting
the transition because it's like, on the one hand, I
was letting go of my best friend and this person
who had meant the world to me and did so
much for me, and now I was all of a
sudden shifting and starting this entirely new life that I
had to put on hold for so many years. So
it was a really interesting transition, and I know it
(30:23):
was all to my mom.
Speaker 1 (30:25):
Chris. For you, you know, suddenly now you're how old
thirty thirty and you're like, WHOA, I can go out
and party or whatever it is. I mean, how have
you adjusted to your new normal?
Speaker 6 (30:39):
Well, I'm still adjusting, and I think i'll.
Speaker 1 (30:41):
Be again because it was so recent.
Speaker 6 (30:42):
Yeah, it happened a couple of weeks ago, So I'm
still adjusting. And it's interesting that you brought up anticipatory
grief or grieving. I think that makes so much sense
to me because at the funeral, I didn't feel of
course I was sad, but I didn't feel sadness in
the way that other people felt sadness. At the funeral,
I felt more so relief, and I because I've anticipated
(31:04):
this day for so long, and now that it's here,
I feel I feel relieved, not only for my grandmother
because she was in so much pain in the last
four days of her life, but I feel so much
relief for me and my mother, who was there for
every step of the way. And I think it's just
a it's such a relieving feeling to know my grandmother
is no longer feeling pain and that she doesn't have
(31:26):
to because she was guilty. You know, in the last
eight year she she hated people helping her out. She
was so independent her entire life. She was a teacher
for twenty years. She immigrated here to the Philippines by herself,
took all her children with her, and she was such
a strong and independent woman for most of her life.
And for her to have somebody by her side twenty
four to seven, it was something that she never really
(31:47):
got used to. So knowing that she doesn't have to
see me every day because she needs help. It's such
a relieving feeling. So I'm still in the you know,
in this transition. It's funny that you say, like I
get to go out and party, because that's every that's
what everybody assumes, like, Yeah, you get to go out
to New York and you don't have to go back
whenever you were since.
Speaker 1 (32:05):
Here from Las Vegas, so he doesn't have to come
to me.
Speaker 6 (32:09):
So but I don't I feel I don't know. I'm
still figuring things out. But I do think similar to
what you were saying about how your mom kind of
set you up, I feel like my grandmother set me up.
Because now I have this really large platform of people
who watch my videos. I can connect with so many
people across the world, and you know, I think I
(32:29):
just have so many opportunities in front of me now,
and I feel like it's my responsibility to be a
good steward of what happens now and all the whatever
happens to me financially. I feel responsible to be a
good steward of that. And because you know, I feel
like a fish in a fishbowl sometimes because you know,
so many people are watching what I do every day.
I do feel a responsibility to not let people down
(32:50):
and be irresponsible in this transition of my life.
Speaker 1 (32:54):
So that's great. And it's such a neglected space, you know,
and people need help and guidance, and I think you're
really filling a knee obviously, and Adrian with your podcast,
and of course Cilia with the important financial advice you're
giving people. What is the one thing you wish you
had known before becoming a caregiver?
Speaker 6 (33:16):
Oh, I wish I would have known that it's amazing
the things that you'll get used to, because at twenty
one twenty two, like a twenty one year old is
not thinking about changing their grandmother's soiled pads or soiled pampers,
or thinking about giving his grandmother a shower. But I
(33:38):
think it's incredible the things that you can get used to.
And I wish I also would have known how fruitful
this journey was going to be. I was able to
spend so much time with my grandmother and hear stories
that I don't think I've ever would have been able
to hear if I wasn't buy er side. I was
able to like have breakfast, lunch, and dinner for the
last eight years with my grandmother, and I think it's
(34:00):
I feel like I won't meet a lot of people
that are able to say that, So I think I
wish I would have known how fruitful. But also at
the same time, if you would have told me that
at twenty two, I don't think I would have believed anybody.
Speaker 1 (34:11):
This young man is an angel? Can I just say, like, what?
Who are you? What about you? Adrian?
Speaker 3 (34:19):
I wish I would have known everything, because there's so
much like the financial aspect, the social, the emotional navigating
just this crazy healthcare system of ours.
Speaker 1 (34:30):
Must that must be very frustrating.
Speaker 3 (34:33):
Yeah, I mean it's literally like you feel like you're
on this deserted island just trying to figure everything out
for yourself. And I wish I would have known to
self identify as a caregiver sooner. I wish I would
have understood what a caregiver was and self identified because
I feel like I would have tried to seek out
(34:54):
resources much earlier in my journey because resources exist, but
unless you you know they're out there, you're never going
to go looking for them. So I wish I would
have known that. I wish I would have known just
how hard it was going to be. I think initially
I was like, Okay, I'm going to take care of
my mom. But I think until you're in the depths
(35:14):
and the throes of it, and there's good days and
bad days, and you're on these crazy like highs and
then these insane lows and this constant emotional roller coaster,
and I say that I developed anxiety, you know, as
a byproduct of my care journey. I just wish I
would have known how to just work through the highs
and lows better. And I wish I would have worked
(35:35):
on myself more during that period to help just kind
of not.
Speaker 1 (35:40):
Take care of yourself so you could take care of
your mom exactly. Yeah, I'm sure that a lot of
caregivers neglect their own health and well being. And that's
a really terrible situation because you have to put your own,
you know, mask on first before you help somebody else.
Is there a specific conversation, and because I think this
(36:01):
will be helpful to everyone listening, that you wish you
would had with your grandmother and your mom before you
found so you really truly understood their wishes or do
you feel that you understood without that conversation if you
had to go back.
Speaker 3 (36:19):
I did not know any of my mom's wishes, and
that puts such a weight on my shoulders because by
the time I was having to make these massive executive
decisions for her, she was not lucid enough to be
able to truly communicate. I didn't know if my mom
wanted to be buried or cremated. I didn't know if
my mom wanted to go in hospice. Like I made
(36:41):
the decision to put her in hospice, I made the
decision to send her into hospice inpatient in a hospital
during COVID in the hopes she would get better. My
mom maybe would have never wanted to go into a
hospital and just would have wanted to stay at home,
and she died in the hospital. So having those cons
is crucial. I think specifically for us at.
Speaker 5 (37:03):
A younger age. You alluded to it earlier. I think
you did.
Speaker 3 (37:07):
It's not pretty conversations. No one wants to sit around
the dinner table and have a conversation about mom.
Speaker 5 (37:14):
Dad, what are your wishes? What do you want?
Speaker 3 (37:18):
And I think it's so essential, and that's probably the
biggest piece of advice I would give anyone at any age.
I mean, I was twenty nine. I didn't even think
about having these conversations. I was like, oh, that's fine.
My mom's going to live to be in her eighties.
We don't have to have these conversations for another twenty years.
Speaker 1 (37:35):
I think it's really an act of love actually to
have these conversations. I remember when my dad died and
I was walking out of the hospital with my brother
and I said, Johnny in my dad worked in newspapers,
and I said, Johnny, we have to write Dad's obituary.
And he said, oh, Katie, he's already written it.
Speaker 3 (37:53):
Oh wow.
Speaker 1 (37:53):
And I thought that was like such a There was
so much kindness for him to take care of it.
So I think you should really look at it as
taking care of each other and a part of the process.
Do you wish you had had any conversation with your grandmother?
Speaker 6 (38:09):
I mean I want to say yes, but I don't
even know what we would what kind of conversation.
Speaker 1 (38:13):
Sounds like you had a lot of conversations.
Speaker 6 (38:15):
I mean, yeah, we did. None of them had anything
to do with me helping her out, but I.
Speaker 1 (38:20):
Hope it wrote down those stories back.
Speaker 6 (38:23):
Well, yeah, a lot of them are recorded, so good.
I'm so glad you know. And that's another thing I'll
get to your question. But I think an amazing thing
about the videos that I made at the funeral. A
lot of my cousins were telling me whenever I miss
our grandmother, I can go through your page and I
could get a glimpse of how she was in all
of her teachings. So I think that's an amazing thing
of you know, documenting life, whether it's on the Internet
(38:44):
or not. I think it's important to document your life
just just to have something to look back on. But
as far as the conversation goes, I mean, I feel
I still feel really young now and at twenty two
I had no I don't I don't even know what
we could have discussed back then to make the the
next eight years a lot easier.
Speaker 3 (39:02):
Uh.
Speaker 6 (39:03):
You know, It's funny my parents and I joke now
they say just throw me in a home, and I
don't think. I don't think I could grant their wish
of just throwing them in a home and just leaving
it at that. I know that's, you know, what they
wish for, but.
Speaker 1 (39:16):
Well maybe they're just kidding. Well, I think when push
comes to that, they may change their minds.
Speaker 6 (39:23):
Yeah, but I don't Yeah, I don't know what we
could have discussed to make it different. I think I think,
you know, we we we took it on a day
at a time, and I think, uh, it was such
a huge responsibility that I think just going through the
motions and figuring it out as I went was the
best way for us to go about it.
Speaker 1 (39:38):
So, so, Celia and closing, what kind of advice would
you give? And I guess maybe I'll open it up
to everybody, to people listening to this about the future
and if they find themselves in a situation of caring
for an elderly family member.
Speaker 2 (40:00):
This is a hard space to give advice. But I
think the couple things I feel like I've gotten from
this conversation. One is having the conversation right, sort of
thinking yourself about what you might want for yourself and
what you want with your family and being willing to
step into that dialogue is maybe thing one.
Speaker 1 (40:16):
Should you write it down? By the way, it's because well,
there are all sorts of legal documents, right, what is
it called when you have a proxy power of attorney,
et cetera. I mean you probably should have some, but
that's not your area of expertise.
Speaker 2 (40:30):
I'm not a lawyer, but there is a lot of
advice about going to either a financial advisor or an
attorney as you start to kind of think about and
plan for these sorts of things. But maybe if I
would actually end with just one thing, the idea that
the life we live today isn't promised to us, and
a lot of our parents are living, or our grandparents
or whoever it is that we love, none of it's
(40:51):
promised to us. And to be spending a little bit
of time thinking about putting something aside and planning for
insurance on the one hand, and then spending time with
you on the other hand. I mean, that's the thing
you guys have me thinking about, is like, who am
I spending time with them? And I'm putting enough time
in the right places because that's what I'm taking from
your stories.
Speaker 5 (41:10):
Yeah.
Speaker 3 (41:10):
I always say that one of the biggest silver linings
in falling into caregiving is I would have never had
the time that I had with my mom should it
have not been for caregiving. And maybe that quality time
looked very different than what it did.
Speaker 5 (41:26):
Before she got sick, but it was still quality time.
Speaker 3 (41:30):
And I will never regret any of that, and having
that and just recognizing that no one lives forever, saying
I love you, living without regrets. Having the conversations before
they're too late, I think is incredibly essential as well.
And I think preparing for caregiving ahead of time is
so important. Like I think of so many things like
(41:52):
the hospice, having to make the executive decision to put
my mom in hospice, so now here my mom is,
I don't know how much longer she has left. If
I would have pre planned and known, okay, when we
get to this point, hospice is going to be done,
I know who to contact, this is everything involved, it
would have alleviated a lot of that emotional stress and
burden that I was already experiencing. So preparing to care,
(42:15):
I say this on my podcast. It's my biggest piece
of advice to young caregivers.
Speaker 5 (42:19):
Prepare to care.
Speaker 3 (42:20):
That's probably one of the biggest things that I would
recommend to anyone, anyone at any age, no matter who
you're caring for, even your spouse. People ask me, now, okay,
so you went through all this with your mom, do
you have a living will in place?
Speaker 5 (42:33):
Like does your husband know your wishes, and it's crazy
because I don't have a living will in place. My
husband doesn't know my wishes.
Speaker 3 (42:41):
So it gets you thinking, and I'm going to go
back home and have this conversation.
Speaker 1 (42:46):
What about you? Chris? Any advice?
Speaker 6 (42:49):
It's tough because I think, like I said earlier, there's
nothing that anybody could have told me at twenty two
to prepare me for the next eight years of my life.
I do think it's important to have those important conversations.
I'm having them with my parents now of Okay, do
you really want to go to a home? Okay, what
does that look like? And even then, even when you
do have those important conversations, it's difficult to prepare for
(43:13):
that emotionally, like you just you don't know. Like people
would always ask me, so, what's going to happen, you know,
when you're no longer a caregiver. I would always answer,
I have no idea, and it's difficult. I would sit
at night and pray and ask how how do I
prepare for something like that? And I never got an
answer because I don't think it's something that you can
prepare for. You could have logistics setup, but emotionally you
(43:35):
won't be prepared to see a loved one decline in
a way that they might.
Speaker 1 (43:39):
It sounds to me that for both of you having
a community is really important, and Adrian, maybe it would
have been helpful for you to find a community earlier,
because I do think talking to people who are going
through similar experiences can be so comforting and make you
(44:00):
feel less alone. So whether it's watching videos and being
a part of a social media or social platform community,
being part of a podcast community. I'm sure there are
lots of support groups for caregivers, and we were talking
before we came on stage that there are a lot
of resources. You just have to go out and find
(44:22):
them and utilize them. But I would imagine just being
able to talk to other people about your experience and
bitching to them about this, that and the other thing,
or it could be really therapeutic.
Speaker 3 (44:35):
We were having a conversation earlier, and it's interesting because
Chris was talking about taking on the responsibility of caring
for his grandmother and at first he almost said burden.
I saw like the be and I was like, you
were going to say burden, weren't you. So it's interesting
because it's only if you don't if you've been through it,
(44:55):
Like nobody else knows what this is like unless you've
been through it, and talking to other caregivers, even talking
to Chris, it's so validating, like you feel seen, you
feel heard, you feel less alone. So having that community
is so essential. That's why I have the podcast. I
started a private Facebook group for young caregivers where it's
a safe space to come in to bitch, to vent
(45:18):
about things that are going on, and know that everyone
in there can one hundred percent relate and understand.
Speaker 5 (45:23):
It's almost like a huge weight is lifted off of
your shoulders.
Speaker 3 (45:26):
I call people that I know young caregivers the set
of friends that I never thought I would have, Like
you have your childhood friends, your mom friends, but I
feel like I have these caregiver friends now that will
understand me like none of my friends ever will.
Speaker 1 (45:41):
Well, Chris and Adrian, I have to say, it's been
a real honor to talk to to such compassionate, selfless people.
Thank you both so much, and Celia, thank you so
much for your sage, wisdom and advice and help in
helping people navigate what can be a very trying situation emotionally, financially,
(46:05):
and in sort of all ways, so I really appreciate it.
Thank you so much for being on Next Question. You
guys were awesome. Thank you, Thanks for listening everyone. If
(46:25):
you have a question for me, a subject you want
us to cover, or you want to share your thoughts
about how you navigate this crazy world and reach out,
you can leave a short message at six oh nine
five one two five to five five, or you can
send me a DM on Instagram. I would love to
hear from you. Next Question is a production of iHeartMedia
(46:47):
and Katy Kurrk Media. The executive producers are Meet Kitty
Kurk and Courtin Litz. Our supervising producer is Ryan Marx,
and our producers are Adriana Fazio and Meredith Barnes. Julian
Weller composed art theme music. For more information about today's episode,
or to sign up for my newsletter wake Up Call,
(47:09):
go to the description in the podcast app, or visit
us at qdcorrect dot com. You can also find me
on Instagram and all my social media channels. For more
podcasts from iHeartRadio, visit the iHeartRadio app, Apple Podcasts, or
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