November 14, 2024 • 42 mins
In this re-launch of the podcast, we talk data around caregiving. Denise Brown is with us to talk about data, why it matters and her tool to help you view some of your own numbers. Why do we need the numbers around care? We have some compelling reasons.
Explore your own caregiving stats
The Data Story of Caregiving event registration
Denise supports individuals managing difficult life experiences with coaching, planning and training. Through her work, Denise helps clients find hope, possibilities and a path forward. Denise began helping individuals who care for a family member in 1990 and launched a business to help them in 1995. She created one of the first online caregiving communities in 1996 which she managed until its sale in 2020.
Denise now develops and delivers training programs for the workplace and for individuals who want to coach family caregivers. More than 400 individuals from eight different countries have enrolled in her training programs offered through her company, The Caregiving Years Training Academy.
Denise began helping her parents in 2004 after her father’s bladder cancer diagnosis. Her mom, who had Parkinson’s disease, died in August 2022, one year to the date after Denise’s brother died. Her father died in July 2023.
You can connect with Denise via her community, CaringOurWay.com.
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
Explore your own caregiving stats
The Data Story of Caregiving event registration
Denise supports individuals managing difficult life experiences with coaching, planning and training. Through her work, Denise helps clients find hope, possibilities and a path forward. Denise began helping individuals who care for a family member in 1990 and launched a business to help them in 1995. She created one of the first online caregiving communities in 1996 which she managed until its sale in 2020.
Denise now develops and delivers training programs for the workplace and for individuals who want to coach family caregivers. More than 400 individuals from eight different countries have enrolled in her training programs offered through her company, The Caregiving Years Training Academy.
Denise began helping her parents in 2004 after her father’s bladder cancer diagnosis. Her mom, who had Parkinson’s disease, died in August 2022, one year to the date after Denise’s brother died. Her father died in July 2023.
You can connect with Denise via her community, CaringOurWay.com.
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:12):
Welcome back to Love Doesn't pay the bills. It's been
a long time. What better month to relaunch than National
Family Caregivers Month. I have a lot of great episodes
lined up for you, so I hope you're as excited
as I am to get this show running again.
Speaker 2 (00:32):
During the past year.
Speaker 1 (00:33):
In addition to my own ongoing care responsibilities, which are
over twenty five hours a week and running my business,
I took an intensive data analysis course through the University
of Oregon, which I'm proud to say I completed with
an A plus EA.
Speaker 2 (00:50):
In just a.
Speaker 1 (00:51):
Minute, we'll talk about caregiving data. I'll share some of
my own numbers, and we'll talk with Denise Brown of
the Carrier's Academy and share her tool which allows you
to easily investigate.
Speaker 2 (01:04):
Some of your own caregiving data.
Speaker 1 (01:07):
There's also been an election recently which has many family caregivers,
including myself, feeling big feelings. I think it's all the
more important that we keep care at the forefront. As
we've discussed in past episodes, care actually has brought it
bipartisan support and is one of those issues that can
bring us together. For myself, the biggest positive political action
(01:32):
I can take with the resources I have is to
keep serving my daughter to make sure that she is safe, healthy,
and comfortable, that she feels seen, heard and loved. Next
comes talking about care. I'm committed to improving the care
economy so that future parents of people with IDD have
(01:54):
a much better experience than I did. Love may not
pay the bat and they do have to be paid,
but love is the basis for everything worthwhile. I intend
to hold on to that a lot in the next
four years. If I don't live in a world where
my daughter's needs are met, well, what is the point.
(02:17):
If I want to live in that world, then I
have to be the caregiver. I want to see the
point of any political actions I might take is to
ensure the well being and freedom of as many humans
as I can.
Speaker 2 (02:28):
Well.
Speaker 1 (02:29):
I have one human in my household who requires about
two full time jobs worth of care work on an
ongoing basis in order to be well and free. If
all I can do is fill some of that direct
care need, that is as important a contribution as one
person can make. Many of you are in a similar position.
(02:50):
Some of you might be feeling guilty or all sorts
of other emotions about not participating in conventional politics more
by knockings, lobbying, gathering signatures, or even running for an
office yourself. A family member's extensive care needs can take
all of our energy, and that's one of the main
(03:11):
points I'm here to talk about. I see this catch
twenty two happening where we have inadequate public formal services
that don't fully compensate care. So caregivers are often isolated
and can't access paid work. So we aren't in the
rooms where decisions are made and structures are designed, so
things aren't built for us, so we can't participate. Round
(03:35):
and round and round it goes. None of us as
individuals can change.
Speaker 2 (03:40):
That by ourselves.
Speaker 1 (03:41):
If you're in an intensive care situation and you do
nothing more than survive each day, you are doing so great.
You are doing your part. Providing care is an enormous,
worthy contribution. That's more than enough. Don't let anyone gaslight
you into thinking what you do is anything less than extraordinary,
(04:03):
because it is and it has a strong economic and
political impact. As the radio host Jeff Golden used to say,
do what you can do. Let's keep doing care, and
let's keep talking about it as much as we can too.
One thing I can do is continue this podcast to
host a platform for you to.
Speaker 2 (04:24):
Talk about care.
Speaker 1 (04:27):
I'm recruiting guests for future episodes. Please email me if
you would like to participate, and you can find my
email address in the show notes. It's Lisa dot Chuty
at Gmail. So with that, we're going to jump into
the episode I have for you today.
Speaker 2 (04:47):
I am a numbers person.
Speaker 1 (04:49):
And today I would like to share my story in numbers.
The story starts when my daughter had a status seizure
that lasted about thirty minutes when she was about thirteen
months old. She was hospitalized for about three days after
(05:11):
and I spent that time in the hospital by her
badside when she was discharged from the hospital. Over the
next year or so, we tried three different daily medications
which failed to control her seizures that were happening on
a regular basis every five days. In fact, she would
(05:32):
have multiple every five days.
Speaker 2 (05:33):
I spent nine years.
Speaker 1 (05:36):
Managing the ketogenic diet for her, which meant that I
was measuring approximately ten thousand meals over those nine years
to the nearest gram. So the ketogenic diet is extremely
specific and very carefully managed. The way it works is
that you need to create a meal plan and very
(05:56):
very specifically sure that your meals have the correct number
of calories and the correct percentage of that. So ten
thousand meals measured to the nearest gram. I scheduled and
attended at least twice monthly medical appointments with various practitioners
(06:19):
over those years, and that adds up to over five
hundred at a conservative estimate. I assisted my daughter to
bathe about three thousand, four hundred times, along with a
lot of other daily tasks and activities of daily living.
As they say, I went eighteen years without wages, providing
(06:44):
care twelve hours a day, with an additional two or
three times that I would wake up at night for
at least the first ten years. My first adult steady
paycheck since part time wage in high school and college
was when I was forty two years old. I'm not
(07:05):
working twenty six hours weekly currently as a paid DSP.
It's time for a break. Please stay right here and
we will be right back. Thank you for sticking around.
We continue our conversation today. I have somebody who has
been a caregiver and far beyond that for a very
(07:26):
long time now, A wonderful advocate and supporter of family caregivers,
and her company, called The Caregiving Years Training Academy, offers
a variety of ways to interact with one another and
trainings and train the trainer trainings. And I have found
(07:50):
Denise's presence to always be very, very positive while acknowledging
the difficulty caregiving and the troubles that we can experience
and being willing to advocate for us. Welcome Denise Brown.
I'm very happy to have you on.
Speaker 3 (08:10):
Yeah, thanks for being thanks for having me, Alisa ungrateful
to be with you.
Speaker 2 (08:14):
Yeah.
Speaker 1 (08:15):
So this really came about because I participated in a
caregiver story event that you hosted, Denise, and the story
that I put together was all about my numbers, and
you said, wait a minute, wait, I have a tool
for caregivers to investigate some of their own numbers, and
(08:38):
not only that, but to collect in a more aggregated
form some data about caregivers. And I thought that was
really exciting. So it's awesome that we have this chance
to talk about it. Yeah.
Speaker 3 (08:54):
Yeah, a couple of years ago. I well, actually, I
will tell you that I have been thinking about this
and am or general way for years, which is what's
private in our homes is very often not publicly understood.
We do so much privately, we endure so much privately,
(09:15):
and yet it can be a challenge to figure out
how to talk about it publicly. Sometimes we worry about
being too public about private matters with our carrier, but
we just don't have the words to really describe privately
what's happening to us. And I think data can tell
that story. And I wanted to figure out a way
to use data to bring out privately our experiences so
(09:40):
that they are publicly understood. So a couple of years
ago I put together a survey, thinking through what are
some ways that we could look at our experiences that
become data. So the survey asks you to gather some
of the data around your experiences. Interestingly enough, I say,
thinking about this, yes, I want.
Speaker 1 (10:01):
To clarify that I took the survey and when you
say collect data around your experience, this is not something
that's going to be a burdensome time investment on behalf
of the survey taker. It's not asking you to go
find your last ten years of some kind of records
or any of that.
Speaker 3 (10:18):
We're not We're not the healthcare system exactly. Just I'm
not a payer exactly. And actually before you take the survey,
I actually tell you here's what you can expect to
be asked. These are some numbers you want to be
you might want to actually find. And one of the
other pieces that we ask you about is what stage
you might be in your caregiving experience. So I have
(10:39):
a concept that stages the experience into six stages, and
we just are curious what stage might you be in?
So what I The other piece of this is, so
you go through the survey, you tell us some data.
What we're doing is really collecting data to tell a story.
And then you have an opportunity to use some templates
that I create that you can actually personalize with your data.
(11:03):
And then when you have a personalized template, you can
post about it on social media. It's a way to
talk about your experiences, to engage others in conversations about
your experiences. So, for instance, one of the data points
that you might want to share is the longest time
you've been on hold on the phone, whether it's with
a doctor, a payer, another type of provider, anyone that
(11:27):
you've called on behalf of your carrier. Because of a
caregiving experience. So I have one of the little graphics
that I've shared over social media over the past couple
of years, and one of the graphics that I found
had listed the number of carries in my caregiving experience
as five, and I thought, where did I come up
(11:48):
with the number five?
Speaker 4 (11:50):
Like, let's say, dreaming, and that yesterday occurred to me,
I have had five carees.
Speaker 3 (11:57):
I just completely forgot about it. And I think that's
that's what happens in our caregiving experience as well. And
I think that's why data can be so helpful for us.
It really reminds us of all we've done, who we've helped,
how long we've been in the fight, so to speak.
And it really I thought for me when I realized that,
(12:18):
I was like, oh my gosh, this has been a
much more prevalent experience in my life than I have
really given it to be.
Speaker 2 (12:30):
Yeah.
Speaker 1 (12:30):
Yeah, And it has been eye opening for me to
start tallying up some of my personal numbers.
Speaker 2 (12:38):
Both what I did separately and also taking your tool.
Speaker 1 (12:42):
It's I think that's one of the important important reasons
to care about data is because for ourselves, it gives
us a way to understand the magnitude of what we've
done and feel some pride of accomplishment and recognize our
own skills and knowledge that we've gained from that.
Speaker 3 (13:07):
I also think, oh, go ahead.
Speaker 2 (13:09):
Yeah, it also.
Speaker 1 (13:12):
Does help us feel like we're not alone, because I've
had some conversations since I shared my numbers, and there's
always some way in which people can relate, and it's
always does make an impression and a way to connect
to others even And it's also a really important advocacy
(13:32):
tool when you get aggregated numbers for better policy, better
business practices, better systems in the large scale and the
formal real and so all those reasons like, I'm so
glad you invented that tool. I think that this kind
(13:53):
of work is super important. And I hope that people
participate in large numbers this year, and.
Speaker 2 (14:03):
That's thank you for working that way.
Speaker 3 (14:07):
Yeah, And you know what else those numbers gave me
was context for why life has been difficult. Right, I
wasn't just imagining it. It wasn't me making it hard.
I wasn't being dramatic. Right, The numbers don't lie right
for the reality.
Speaker 1 (14:26):
And there's so much about caregiving you're right that we
tend to be so dismissive about and we tend to.
Speaker 2 (14:39):
We tend to get gas lit a lot of times,
and and and really be.
Speaker 1 (14:45):
Expected to dismiss our own amount of efforts that we
put in, in our own number of hours that we've
put in, in our own skills that we've brought to bear.
And so I think that when we take a minute,
you know, hey, we're talking numbers, right. That's so dry,
that's so boring, that's so uninteresting.
Speaker 2 (15:11):
To a lot of people.
Speaker 1 (15:12):
But yet it is a really powerful way that we
can understand ourselves, understand each.
Speaker 2 (15:17):
Other, validate what we're doing, what we're doing.
Speaker 1 (15:23):
And it's very because it's so objective. There's always an observer,
but because it tends to be respected in that way.
When I say ten thousand meals measured to the nearest gram,
you can't argue that that's substantial, that that isn't substantial.
You would have to accept that as.
Speaker 3 (15:45):
Substantial exactly exactly. For instance, if you were to track
how many phone calls it took an order to get
to a program that could help, that is helpful information
to share. When someone says, well, why don't you just
get some help. Yeah, because the last program I found
(16:09):
that could help, it took me twenty phone calls to
find it and set up the help. If you were
to track how many home health aid home health aids
you've used over the past year, that explains why it's
so hard to have help, because it's always a churn.
(16:31):
There's always someone new. There's always someone new you're training
and adjusting to and managing, and then something happens. They
hurt their back, they're sick, no longer available.
Speaker 2 (16:42):
And they just move on to co operates. Yeah.
Speaker 3 (16:46):
Yeah, you have to start over to be able to
say to someone this is the twenty fifth home health
aid I've used in the past six months. And it's
not because of me. It's because of the industry that's
compelled data that really speaks to oh wow, that's a problem,
and then it starts the conversation about, well, what is
(17:09):
the problem, and then you can have a really interesting
conversation about what could be the solution.
Speaker 2 (17:16):
Yeah.
Speaker 1 (17:17):
Yeah, how did you come to this realization about the
power of data and what gave you the idea to
start your tool?
Speaker 3 (17:28):
Yeah, so it was two years ago and I really
was just thinking about how do we take this private
experience and take it out into the public. And I
wanted to think about how do I collect data? Without
just collecting data, I could have stopped at the survey.
I could have asked seven different questions in a simple survey,
(17:49):
collected that data and said that would be enough. I
wanted it to be a tool that you could use
though that the data became something that was meaningful for you.
And that's why I create that these customized templates where
you can plug in your numbers and change the theme
that you want to use for this graphic, So you
could create different graphics depending on a theme. You could
(18:12):
expand on the survey. It could inspire you to think through,
for instance, how many home health aids have I used
over the past six months? What was the last time
I got a break? How many phone calls did it
really take to get this program to start? How many
years have I been on a waiting list for a
program to start? You can do a lot with this
(18:33):
data that I think again helps people understand the reality.
What's interesting about caregiving because it's so private and it's
in the house, it's intangible. For many people, it just
can't understand it So for instance, if I were to
take a walk in my neighborhood and go to a park,
I would see young families, and I would see parents
(18:57):
interacting with their children and doing things for their kids,
providing them with snacks, chasing them, calming them when they cry.
I would have an insight into what parenting is like.
There's not necessarily that similar experience in caregiving.
Speaker 4 (19:12):
Everyone.
Speaker 3 (19:13):
Once in a while you'll see it. You'll see someone,
for instance, pulling up in a car, going to the trunk,
taking out a wheelchair and just that. I mean, if
you were to count how many times you've taken the
wheelchair out of the trunk, I mean that would be compellative, right, yes, right,
you watch someone do that, and then you watch someone
help their carry out of the car and into the wheelchair. Wow,
(19:36):
that is something that you think that you think that
is hard to do, and when you put a number
on how many times you do it, wow Wow. That
really I think becomes interesting for a conversation around the
reality and can spark hopefully helpful conversations about what's the
(19:59):
support help that we need.
Speaker 1 (20:01):
Yeah, and that's really the bottom line, because there are
so many people that are struggling with providing care.
Speaker 2 (20:12):
And I think.
Speaker 1 (20:16):
There are a couple of points that come out of
what you just said that I was thinking of while
you're talking. First of all, this is a theme that's
been emerging in conversations I've had, and Alyssa Strauss that
I just interviewed has a term for it called the
glass door, which is the importance of bringing care into
(20:39):
the public, bringing public life into care, and that they
really are not and don't need to be and shouldn't
be separate. And so I think that's such an important
concept that you touched on that.
Speaker 2 (20:56):
Tracking numbers helps with. That is.
Speaker 1 (21:03):
At the heart of of how do we make life
better for people. It's like this circular circle, circular layers
of influence, like if if we had a world that
was built more for caregivers and all of the things
(21:25):
that that I've talked about on this podcast that you've
that you talked about, that that if care was better
shared among more people, if care were supported with money,
if care were supported with a lot of the other
kinds of resources that might help, such as easy access
(21:47):
to equipment or easy or taking away some of those
administrative hurdles that we face, and just making systems simpler.
If all of those kind of things were in place,
we might be more able to spend some time in effort,
for example, to do voting. And yet the way to
(22:10):
get those things in place is for us to make
the efforts and be included in voting. And so it
is this like catch twenty two. And I see that
in a lot of places, like we're not included because
things are not set up for us, and things are
not set up for us because we're not included making
(22:31):
the decisions, and we're not in some back rooms somewhere
saying hey, guys, wait a minute, this won't work for
my family to participate.
Speaker 2 (22:41):
So how do we break that cycle?
Speaker 3 (22:47):
Part of it is oh, no idea, honestly. So I'm
going to talk about I'm going to talk about a
lot because I think about this all the time, like
so many things within the healthcare so are so burdens
just like awful. It's awful. It's awful, and it's set
(23:09):
up within the system to work for the system. I
was talking to my niece this morning, and I was
talking about institutions that say they have patient centered care.
No institution has patient centered care because the institution is
set up to serve itself. That's just how it is.
That's just how it is. They use these taglines to
make it seem like they are friendly to us and
(23:31):
helpful to us, and it's not the reality. I think
we are in a catastrophe. I was thinking about this yesterday.
Last week we were on we were in a crisis,
on the cusp of a catastrophe. We're in the catastrophe.
I would say, just with over the week, I think
we moved into a catastrophe. And if we're in a catastrophe,
(23:51):
things are going to stop working. And the only blessing
of something stopping stopping that stops working is that we
have to rebuild it. And I think we're going to
be in a position where things are just going to
be rebuilt. The way the system is set up, it's
impossible to improve it. It's archaic, it's so on user friendly.
(24:18):
It would be just impossible to try to improve it.
It's just not improvable. But if we start from scratch,
that's when it becomes improvable.
Speaker 1 (24:26):
It's time for a break. Please stay right here and
we will be right back. Thank you for sticking around.
We continue our conversation.
Speaker 3 (24:35):
I was at a conference a couple of weeks ago
in Las Vegas, and it was for It's a conference
called Health and it's a focus on digital health but
also population health, and they talk about different solutions that
are being introduced. I was at that conference a year ago,
and what had changed in a year blew my mind,
(24:58):
and I left the conference this year more hopeful than
I've ever been after leaving a conference, I felt like
what's old is gone, and I think we have used old,
old technology, old perspectives, old design so long that it's
(25:19):
gone and what's coming now is new, and what's new
is really going to be transformative. I really felt like
we're in a good spot now. And what I liked
about it was I sometimes get so frustrated going to
conferences where it's all about research. In the caregiving space,
(25:39):
we have over researched. We reached the level of over
researching twenty years ago and we've continued to research. All
the money has gone into research and funding startups that
have gone belly up. When I loved this conference, I
felt so good about how family caregivers were being integrated.
(26:00):
So it wasn't a special solution for them. It was
a solution for all, which is what you've been talking
about family caregiver. Caregivers are integrated into the solution, which
is what we need. That's why we need it to
start over. The solutions don't that currently exist, don't integrate
family caregivers. It's the old school. And I really felt like, wow,
we are really talking about real world solutions that actually
(26:24):
help and support people and are built for people. That
was that was good. That felt really good.
Speaker 2 (26:35):
Awesome. We need all the good we can get right now. Yeah.
Speaker 1 (26:41):
I think that that that speaks to that idea of
bringing caregiving public and public into caregiving and making sure
that our institutions and our uh.
Speaker 2 (26:56):
Formal systems are they're.
Speaker 1 (27:02):
Designed for and buy and with people who are also
family caregivers, and that we bring as many people as
possible into that role of family caregivers. I think one
of the problems is that we tend to put it
on the shoulders of too few people.
Speaker 3 (27:21):
Yeah. So, speaking of trying to build something from the ashes,
so to speak, I think about a couple things that
came out of the pandemic that actually were really helpful,
like telehealth.
Speaker 2 (27:32):
Yeah, it can be extremely helpful yes.
Speaker 3 (27:35):
And the other one is clinicians being able to practice
across states. So rather than having a license that's specific
to a state, you have a license now that could
be specific to a region. So I was just reading
about a shared plan among I think it's thirty nine
states where clinicians will be able to practice within those states,
(28:01):
so it's not limited just to where they live, which
is very helpful, and it's very helpful for a couple
of reasons. There's a shortage of clinicians. If we need
more clinicians, we need need them to practice where the
need is, and they might be living in an urban area,
and the need might be in a rural area. If
we're going to serve those who live in a rural area,
(28:22):
we need clinics.
Speaker 1 (28:23):
You're talking about my area, Like I live in a
relatively small ish area, and there there's a real shortage
of just primary care doctors. And if people were, for example,
willing to travel four to six hours twice a month,
(28:47):
that might alleviate some of that. If if some physicians
would come visit on some kind of regular basis, that
that might be a way that that people here could
be served a lot better.
Speaker 2 (28:59):
And so that's awesome.
Speaker 1 (29:01):
I hadn't encountered that or realized that that came out
of the pandemic.
Speaker 3 (29:04):
I think yeah, and telehealth is one way to actually
solve that. So rather than being worried about a clinician
who has a license in California that's open being available
to actually meet with through telehealth with patients in Oregon,
but they couldn't because their license only covered them in California.
(29:25):
Now we won't have to necessarily worry about that, So you.
Speaker 1 (29:29):
Can eliminate both the physical travel and the licensing difficulties.
That's yeah, that's really good news. Now there are some
things that with medical care that can't be done remotely.
There is, yes a need or in person visits to
(29:50):
happen at some point for some visits, but maybe even
by having the telehealth option, you can reserve the in
person capability for the ones that it most needed.
Speaker 3 (30:07):
Yeah, it's not it's not the final and ultimate and
best solution, but it's a solution and it's not one
that we've had before.
Speaker 2 (30:16):
It's an interesting piece of the puzzle. Yeah.
Speaker 3 (30:19):
Yeah, and I think AI is going to change some things.
One of the things that occurred to me at the
conference in Vegas, is that AI is going to help
us organize health records from the various systems that we
actually have to use. So, depending on how many hospital
systems and physician practices you're using, you might have to
(30:42):
log into three or four different portals to access medical records.
But AI will do that for you, So you have
one account that's pulling in all that information, all that
medical record information, without you having to do anything other
than just direct your AI assistant to do it.
Speaker 2 (31:03):
Yeah, which would be really helpful.
Speaker 1 (31:05):
I've heard a lot of times from family caregivers. You know,
why can't there be a universal intake form for all
these doctors I go to and they all want the
same yes, the same questions answered over and over again.
Why isn't there a universal form that they'll accept?
Speaker 3 (31:24):
Yeah, it's infuriating. And the other piece of it is,
not only is it just why isn't there one universal form?
But why isn't it just that I tell one person
once within a care setting or an appointment or a hospitalization.
Why do I have to continuously repeat what has happened
to the various clinicians who will see me within this
(31:48):
particular period of time. Yeah, that is so aggravating.
Speaker 1 (31:52):
It does get really frustrating to some extent, I can
understand a reason behind some of it, from the sense
of for the purpose of the practitioners understanding more nuanced
details in the various telling times you tell it, or
(32:15):
even hearing whether you're consistent or not in some cases
that that could could be part of what they're listening for,
you know, Like I can see to some extent a
use in some of that, But then a lot of
it also does just boil down to like it being
(32:36):
set up to make money for the practice, to conserve
the uh, the tie the employee time at the cost
of the patients or their family member's time, and just
(32:57):
just being disrespectful in that way. Yeah.
Speaker 3 (33:02):
Yeah, my mom was hospitalized and she was seriously ill
in twenty fifteen. She went through the emergency room, then
to the ICU, and then she was finally stabilized and
moved to a regular room. And she was moved to
a regular room on a Saturday, And this was a
big day because she had almost died and we were
(33:22):
so happy that she was out of ICU and seeming
to recover, and then boom, she had a huge event
and so she went back to ICU. So she had
been in the same hospital for three plus weeks, emergency room,
ICU General floor, back to ICU. When she returned to
(33:44):
ICU just a few hours after being moved off ICU,
not even days, just right, Yeah, it was our same day.
The physician who was on call, who went in to
see her and I happened to be in the room
with her, said, Sally tell us, I mean, it's comical. Really,
(34:05):
my mom is like literally almost dying. And the physician
says to her, Sally, tell us, what brings you to
the hospital today. It's like, what are you talking about?
Speaker 1 (34:14):
I said, she's you know, I do you not see
the stack a record from the last three weeks?
Speaker 3 (34:20):
I said, why are you asking her this? It's all
in your medical works. I have to ask her this.
Oh my god. I had to leave the room because
I thought I am not really a violent person, but
I'm going to be violent here. What are we doing?
You could see this stress and the family in the room,
like we were all just devastated that here we thought
(34:41):
we had got her to recovery and now she's back
to almost dying. And then for a physician to just
walk in as.
Speaker 2 (34:47):
If, huh, what's going on?
Speaker 3 (34:49):
Yeah'sah, so tell me what brings you to the hospital today.
What are you talking about. That's the kind of stuff
that happens that's set up for the system that is
in creating degrading stressful for carries and family caregivers, completely unnecessary.
Speaker 1 (35:08):
Yeah, yeah, that's a really I I can only imagine
how frustrating and and.
Speaker 2 (35:19):
How how angry that would make you.
Speaker 1 (35:23):
That's not right for you to be in this institution
that's been providing care for three weeks, for three weeks,
and a representative of this institution walks in and says
what's going on?
Speaker 3 (35:40):
Like so that would be an institution that would call
itself patient focused care. So what I say to that is,
you know what I'll just say. I'll just say two
letters BS. That is BS, because that is not patient
focused care in any way, in any way.
Speaker 2 (36:00):
Yeah, Yeah, I'm sorry that happened.
Speaker 1 (36:03):
That's really yeah, really frustrating. So, you know, data access
to data. If the practitioner we're using the data that
they have collected, then it could be a more seamless
(36:26):
experience and they could get uh to.
Speaker 2 (36:31):
Providing the care for you. Mom a lot quicker.
Speaker 3 (36:34):
Yeah, might you know, read the medical record before you
go into the hospital and then just say something that
actually reflects the reality of what's happening, which is, oh
my gosh, Sally, have you been through the ringer, I'm
so sorry to see you back here, and then say
tell me what happened, but don't act like she just.
Speaker 4 (36:54):
Walked into the hospital system and had no record of
being there for three weeks. That is the piece that
just really it really got me, just that the physician
didn't have any sense of being empathetic and able to
actually manage that situation with.
Speaker 3 (37:12):
A few simple sentences. That's all she needed to do.
That's all she needed to do in esten, She just
needed to read the records and then read the room
and then act appropriately.
Speaker 2 (37:24):
Yeah.
Speaker 1 (37:25):
Yeah, Ultimately, how did your mom do?
Speaker 3 (37:32):
She did recover, She never recovered to her previous status.
She had a stomach bleed that started on a Saturday,
and they were not able to actually oh she had
so many things that went wrong. Oh gosh, but they
weren't actually effective with the traditional intervention to stop a
stomach bleed. So she had something like twenty five different
(37:56):
blood transfusions. She had three or four different interventions that
weren't successful, and finally they did emergency surgery that to
remove a third of her stomach and that's what stopped
the bleeding. She never fully recovered. She went to rehab
and she did get better. Unfortunately, then she was diagnosed
(38:17):
with Parkinson's. But the delay of her Parkinson's diagnosis I
think is related to that hospitalization because so many things
changed for her that it was hard to understand what
else might be happening, right, and so anyway.
Speaker 1 (38:33):
It would take any one time to sort out a
change as a result of those events that just happened
versus a new disease process.
Speaker 2 (38:46):
That's sounds pretty unrelated.
Speaker 3 (38:49):
Like, yes, exactly, that's exactly what happened.
Speaker 2 (38:53):
Yeah, yeah, and.
Speaker 1 (38:54):
You would be thinking anyone would be thinking that changes
would have been due to.
Speaker 2 (39:03):
These recent events, yes exactly. Yeah, yeah, wow, that's.
Speaker 1 (39:15):
That's that's quite an experience to go through. And some people,
for whatever reason, don't respond to the conventional treatments. And
if you get further and further down those lines where
it's not working, it gets Ah, that's where it gets
(39:42):
super intense, and it can be scary, and when you
know you're in a long haul kind of kind of
thing until you figure it out.
Speaker 3 (39:52):
Yeah. Yeah, that's when your panicstricken.
Speaker 2 (39:55):
Yeah yeah.
Speaker 1 (40:00):
And thank goodness you know that there is so much
modern medicine and there are so many things to try
and and that there are even organized protocols that are
generally going to work or structured in a sensible way.
It was really wonderful talking with you, and thank you
(40:22):
for your time. You have a wide variety of offerings,
including the tool that we've talked about for people to
get some of their own numbers written down in front
of them.
Speaker 2 (40:33):
I would highly encourage people to go.
Speaker 1 (40:38):
To the carrier's website, Carrying our Way dot com and
check it all out, participate in some of the events
that you hold, and you you bring us together in
quite a few different ways too, which is a big
service that you do and I appreciate that. And thank
you for being on today. Thank you for we are
(41:00):
bringing an emphasis to data around care. And do you
have any closing words, anything you want to add that
we haven't covered yet.
Speaker 3 (41:12):
Yeah, just thanks Lisa for all you do, and thanks
to all the listeners for all you do. You do
a lot, and it's important to receive that acknowledgment, I'll.
Speaker 1 (41:21):
Be participating in an event that Denise is hosting on
November twentieth, entitled The Data Story of Caregiving. I would
love for you to join us at that online event
and get tickets at event right, and I will put the.
Speaker 2 (41:37):
Link in the show notes.
Speaker 1 (41:42):
I'm Lisa Hudy and this has loved usn't pay the bills.
If you've enjoyed the show, please tell a friend. People
(42:02):
Book Commander
Welcome back to Love Doesn't pay the bills. It's been
a long time. What better month to relaunch than National
Family Caregivers Month. I have a lot of great episodes
lined up for you, so I hope you're as excited
as I am to get this show running again.
Speaker 2 (00:32):
During the past year.
Speaker 1 (00:33):
In addition to my own ongoing care responsibilities, which are
over twenty five hours a week and running my business,
I took an intensive data analysis course through the University
of Oregon, which I'm proud to say I completed with
an A plus EA.
Speaker 2 (00:50):
In just a.
Speaker 1 (00:51):
Minute, we'll talk about caregiving data. I'll share some of
my own numbers, and we'll talk with Denise Brown of
the Carrier's Academy and share her tool which allows you
to easily investigate.
Speaker 2 (01:04):
Some of your own caregiving data.
Speaker 1 (01:07):
There's also been an election recently which has many family caregivers,
including myself, feeling big feelings. I think it's all the
more important that we keep care at the forefront. As
we've discussed in past episodes, care actually has brought it
bipartisan support and is one of those issues that can
bring us together. For myself, the biggest positive political action
(01:32):
I can take with the resources I have is to
keep serving my daughter to make sure that she is safe, healthy,
and comfortable, that she feels seen, heard and loved. Next
comes talking about care. I'm committed to improving the care
economy so that future parents of people with IDD have
(01:54):
a much better experience than I did. Love may not
pay the bat and they do have to be paid,
but love is the basis for everything worthwhile. I intend
to hold on to that a lot in the next
four years. If I don't live in a world where
my daughter's needs are met, well, what is the point.
(02:17):
If I want to live in that world, then I
have to be the caregiver. I want to see the
point of any political actions I might take is to
ensure the well being and freedom of as many humans
as I can.
Speaker 2 (02:28):
Well.
Speaker 1 (02:29):
I have one human in my household who requires about
two full time jobs worth of care work on an
ongoing basis in order to be well and free. If
all I can do is fill some of that direct
care need, that is as important a contribution as one
person can make. Many of you are in a similar position.
(02:50):
Some of you might be feeling guilty or all sorts
of other emotions about not participating in conventional politics more
by knockings, lobbying, gathering signatures, or even running for an
office yourself. A family member's extensive care needs can take
all of our energy, and that's one of the main
(03:11):
points I'm here to talk about. I see this catch
twenty two happening where we have inadequate public formal services
that don't fully compensate care. So caregivers are often isolated
and can't access paid work. So we aren't in the
rooms where decisions are made and structures are designed, so
things aren't built for us, so we can't participate. Round
(03:35):
and round and round it goes. None of us as
individuals can change.
Speaker 2 (03:40):
That by ourselves.
Speaker 1 (03:41):
If you're in an intensive care situation and you do
nothing more than survive each day, you are doing so great.
You are doing your part. Providing care is an enormous,
worthy contribution. That's more than enough. Don't let anyone gaslight
you into thinking what you do is anything less than extraordinary,
(04:03):
because it is and it has a strong economic and
political impact. As the radio host Jeff Golden used to say,
do what you can do. Let's keep doing care, and
let's keep talking about it as much as we can too.
One thing I can do is continue this podcast to
host a platform for you to.
Speaker 2 (04:24):
Talk about care.
Speaker 1 (04:27):
I'm recruiting guests for future episodes. Please email me if
you would like to participate, and you can find my
email address in the show notes. It's Lisa dot Chuty
at Gmail. So with that, we're going to jump into
the episode I have for you today.
Speaker 2 (04:47):
I am a numbers person.
Speaker 1 (04:49):
And today I would like to share my story in numbers.
The story starts when my daughter had a status seizure
that lasted about thirty minutes when she was about thirteen
months old. She was hospitalized for about three days after
(05:11):
and I spent that time in the hospital by her
badside when she was discharged from the hospital. Over the
next year or so, we tried three different daily medications
which failed to control her seizures that were happening on
a regular basis every five days. In fact, she would
(05:32):
have multiple every five days.
Speaker 2 (05:33):
I spent nine years.
Speaker 1 (05:36):
Managing the ketogenic diet for her, which meant that I
was measuring approximately ten thousand meals over those nine years
to the nearest gram. So the ketogenic diet is extremely
specific and very carefully managed. The way it works is
that you need to create a meal plan and very
(05:56):
very specifically sure that your meals have the correct number
of calories and the correct percentage of that. So ten
thousand meals measured to the nearest gram. I scheduled and
attended at least twice monthly medical appointments with various practitioners
(06:19):
over those years, and that adds up to over five
hundred at a conservative estimate. I assisted my daughter to
bathe about three thousand, four hundred times, along with a
lot of other daily tasks and activities of daily living.
As they say, I went eighteen years without wages, providing
(06:44):
care twelve hours a day, with an additional two or
three times that I would wake up at night for
at least the first ten years. My first adult steady
paycheck since part time wage in high school and college
was when I was forty two years old. I'm not
(07:05):
working twenty six hours weekly currently as a paid DSP.
It's time for a break. Please stay right here and
we will be right back. Thank you for sticking around.
We continue our conversation today. I have somebody who has
been a caregiver and far beyond that for a very
(07:26):
long time now, A wonderful advocate and supporter of family caregivers,
and her company, called The Caregiving Years Training Academy, offers
a variety of ways to interact with one another and
trainings and train the trainer trainings. And I have found
(07:50):
Denise's presence to always be very, very positive while acknowledging
the difficulty caregiving and the troubles that we can experience
and being willing to advocate for us. Welcome Denise Brown.
I'm very happy to have you on.
Speaker 3 (08:10):
Yeah, thanks for being thanks for having me, Alisa ungrateful
to be with you.
Speaker 2 (08:14):
Yeah.
Speaker 1 (08:15):
So this really came about because I participated in a
caregiver story event that you hosted, Denise, and the story
that I put together was all about my numbers, and
you said, wait a minute, wait, I have a tool
for caregivers to investigate some of their own numbers, and
(08:38):
not only that, but to collect in a more aggregated
form some data about caregivers. And I thought that was
really exciting. So it's awesome that we have this chance
to talk about it. Yeah.
Speaker 3 (08:54):
Yeah, a couple of years ago. I well, actually, I
will tell you that I have been thinking about this
and am or general way for years, which is what's
private in our homes is very often not publicly understood.
We do so much privately, we endure so much privately,
(09:15):
and yet it can be a challenge to figure out
how to talk about it publicly. Sometimes we worry about
being too public about private matters with our carrier, but
we just don't have the words to really describe privately
what's happening to us. And I think data can tell
that story. And I wanted to figure out a way
to use data to bring out privately our experiences so
(09:40):
that they are publicly understood. So a couple of years
ago I put together a survey, thinking through what are
some ways that we could look at our experiences that
become data. So the survey asks you to gather some
of the data around your experiences. Interestingly enough, I say,
thinking about this, yes, I want.
Speaker 1 (10:01):
To clarify that I took the survey and when you
say collect data around your experience, this is not something
that's going to be a burdensome time investment on behalf
of the survey taker. It's not asking you to go
find your last ten years of some kind of records
or any of that.
Speaker 3 (10:18):
We're not We're not the healthcare system exactly. Just I'm
not a payer exactly. And actually before you take the survey,
I actually tell you here's what you can expect to
be asked. These are some numbers you want to be
you might want to actually find. And one of the
other pieces that we ask you about is what stage
you might be in your caregiving experience. So I have
(10:39):
a concept that stages the experience into six stages, and
we just are curious what stage might you be in?
So what I The other piece of this is, so
you go through the survey, you tell us some data.
What we're doing is really collecting data to tell a story.
And then you have an opportunity to use some templates
that I create that you can actually personalize with your data.
(11:03):
And then when you have a personalized template, you can
post about it on social media. It's a way to
talk about your experiences, to engage others in conversations about
your experiences. So, for instance, one of the data points
that you might want to share is the longest time
you've been on hold on the phone, whether it's with
a doctor, a payer, another type of provider, anyone that
(11:27):
you've called on behalf of your carrier. Because of a
caregiving experience. So I have one of the little graphics
that I've shared over social media over the past couple
of years, and one of the graphics that I found
had listed the number of carries in my caregiving experience
as five, and I thought, where did I come up
(11:48):
with the number five?
Speaker 4 (11:50):
Like, let's say, dreaming, and that yesterday occurred to me,
I have had five carees.
Speaker 3 (11:57):
I just completely forgot about it. And I think that's
that's what happens in our caregiving experience as well. And
I think that's why data can be so helpful for us.
It really reminds us of all we've done, who we've helped,
how long we've been in the fight, so to speak.
And it really I thought for me when I realized that,
(12:18):
I was like, oh my gosh, this has been a
much more prevalent experience in my life than I have
really given it to be.
Speaker 2 (12:30):
Yeah.
Speaker 1 (12:30):
Yeah, And it has been eye opening for me to
start tallying up some of my personal numbers.
Speaker 2 (12:38):
Both what I did separately and also taking your tool.
Speaker 1 (12:42):
It's I think that's one of the important important reasons
to care about data is because for ourselves, it gives
us a way to understand the magnitude of what we've
done and feel some pride of accomplishment and recognize our
own skills and knowledge that we've gained from that.
Speaker 3 (13:07):
I also think, oh, go ahead.
Speaker 2 (13:09):
Yeah, it also.
Speaker 1 (13:12):
Does help us feel like we're not alone, because I've
had some conversations since I shared my numbers, and there's
always some way in which people can relate, and it's
always does make an impression and a way to connect
to others even And it's also a really important advocacy
(13:32):
tool when you get aggregated numbers for better policy, better
business practices, better systems in the large scale and the
formal real and so all those reasons like, I'm so
glad you invented that tool. I think that this kind
(13:53):
of work is super important. And I hope that people
participate in large numbers this year, and.
Speaker 2 (14:03):
That's thank you for working that way.
Speaker 3 (14:07):
Yeah, And you know what else those numbers gave me
was context for why life has been difficult. Right, I
wasn't just imagining it. It wasn't me making it hard.
I wasn't being dramatic. Right, The numbers don't lie right
for the reality.
Speaker 1 (14:26):
And there's so much about caregiving you're right that we
tend to be so dismissive about and we tend to.
Speaker 2 (14:39):
We tend to get gas lit a lot of times,
and and and really be.
Speaker 1 (14:45):
Expected to dismiss our own amount of efforts that we
put in, in our own number of hours that we've
put in, in our own skills that we've brought to bear.
And so I think that when we take a minute,
you know, hey, we're talking numbers, right. That's so dry,
that's so boring, that's so uninteresting.
Speaker 2 (15:11):
To a lot of people.
Speaker 1 (15:12):
But yet it is a really powerful way that we
can understand ourselves, understand each.
Speaker 2 (15:17):
Other, validate what we're doing, what we're doing.
Speaker 1 (15:23):
And it's very because it's so objective. There's always an observer,
but because it tends to be respected in that way.
When I say ten thousand meals measured to the nearest gram,
you can't argue that that's substantial, that that isn't substantial.
You would have to accept that as.
Speaker 3 (15:45):
Substantial exactly exactly. For instance, if you were to track
how many phone calls it took an order to get
to a program that could help, that is helpful information
to share. When someone says, well, why don't you just
get some help. Yeah, because the last program I found
(16:09):
that could help, it took me twenty phone calls to
find it and set up the help. If you were
to track how many home health aid home health aids
you've used over the past year, that explains why it's
so hard to have help, because it's always a churn.
(16:31):
There's always someone new. There's always someone new you're training
and adjusting to and managing, and then something happens. They
hurt their back, they're sick, no longer available.
Speaker 2 (16:42):
And they just move on to co operates. Yeah.
Speaker 3 (16:46):
Yeah, you have to start over to be able to
say to someone this is the twenty fifth home health
aid I've used in the past six months. And it's
not because of me. It's because of the industry that's
compelled data that really speaks to oh wow, that's a problem,
and then it starts the conversation about, well, what is
(17:09):
the problem, and then you can have a really interesting
conversation about what could be the solution.
Speaker 2 (17:16):
Yeah.
Speaker 1 (17:17):
Yeah, how did you come to this realization about the
power of data and what gave you the idea to
start your tool?
Speaker 3 (17:28):
Yeah, so it was two years ago and I really
was just thinking about how do we take this private
experience and take it out into the public. And I
wanted to think about how do I collect data? Without
just collecting data, I could have stopped at the survey.
I could have asked seven different questions in a simple survey,
(17:49):
collected that data and said that would be enough. I
wanted it to be a tool that you could use
though that the data became something that was meaningful for you.
And that's why I create that these customized templates where
you can plug in your numbers and change the theme
that you want to use for this graphic, So you
could create different graphics depending on a theme. You could
(18:12):
expand on the survey. It could inspire you to think through,
for instance, how many home health aids have I used
over the past six months? What was the last time
I got a break? How many phone calls did it
really take to get this program to start? How many
years have I been on a waiting list for a
program to start? You can do a lot with this
(18:33):
data that I think again helps people understand the reality.
What's interesting about caregiving because it's so private and it's
in the house, it's intangible. For many people, it just
can't understand it So for instance, if I were to
take a walk in my neighborhood and go to a park,
I would see young families, and I would see parents
(18:57):
interacting with their children and doing things for their kids,
providing them with snacks, chasing them, calming them when they cry.
I would have an insight into what parenting is like.
There's not necessarily that similar experience in caregiving.
Speaker 4 (19:12):
Everyone.
Speaker 3 (19:13):
Once in a while you'll see it. You'll see someone,
for instance, pulling up in a car, going to the trunk,
taking out a wheelchair and just that. I mean, if
you were to count how many times you've taken the
wheelchair out of the trunk, I mean that would be compellative, right, yes, right,
you watch someone do that, and then you watch someone
help their carry out of the car and into the wheelchair. Wow,
(19:36):
that is something that you think that you think that
is hard to do, and when you put a number
on how many times you do it, wow Wow. That
really I think becomes interesting for a conversation around the
reality and can spark hopefully helpful conversations about what's the
(19:59):
support help that we need.
Speaker 1 (20:01):
Yeah, and that's really the bottom line, because there are
so many people that are struggling with providing care.
Speaker 2 (20:12):
And I think.
Speaker 1 (20:16):
There are a couple of points that come out of
what you just said that I was thinking of while
you're talking. First of all, this is a theme that's
been emerging in conversations I've had, and Alyssa Strauss that
I just interviewed has a term for it called the
glass door, which is the importance of bringing care into
(20:39):
the public, bringing public life into care, and that they
really are not and don't need to be and shouldn't
be separate. And so I think that's such an important
concept that you touched on that.
Speaker 2 (20:56):
Tracking numbers helps with. That is.
Speaker 1 (21:03):
At the heart of of how do we make life
better for people. It's like this circular circle, circular layers
of influence, like if if we had a world that
was built more for caregivers and all of the things
(21:25):
that that I've talked about on this podcast that you've
that you talked about, that that if care was better
shared among more people, if care were supported with money,
if care were supported with a lot of the other
kinds of resources that might help, such as easy access
(21:47):
to equipment or easy or taking away some of those
administrative hurdles that we face, and just making systems simpler.
If all of those kind of things were in place,
we might be more able to spend some time in effort,
for example, to do voting. And yet the way to
(22:10):
get those things in place is for us to make
the efforts and be included in voting. And so it
is this like catch twenty two. And I see that
in a lot of places, like we're not included because
things are not set up for us, and things are
not set up for us because we're not included making
(22:31):
the decisions, and we're not in some back rooms somewhere
saying hey, guys, wait a minute, this won't work for
my family to participate.
Speaker 2 (22:41):
So how do we break that cycle?
Speaker 3 (22:47):
Part of it is oh, no idea, honestly. So I'm
going to talk about I'm going to talk about a
lot because I think about this all the time, like
so many things within the healthcare so are so burdens
just like awful. It's awful. It's awful, and it's set
(23:09):
up within the system to work for the system. I
was talking to my niece this morning, and I was
talking about institutions that say they have patient centered care.
No institution has patient centered care because the institution is
set up to serve itself. That's just how it is.
That's just how it is. They use these taglines to
make it seem like they are friendly to us and
(23:31):
helpful to us, and it's not the reality. I think
we are in a catastrophe. I was thinking about this yesterday.
Last week we were on we were in a crisis,
on the cusp of a catastrophe. We're in the catastrophe.
I would say, just with over the week, I think
we moved into a catastrophe. And if we're in a catastrophe,
(23:51):
things are going to stop working. And the only blessing
of something stopping stopping that stops working is that we
have to rebuild it. And I think we're going to
be in a position where things are just going to
be rebuilt. The way the system is set up, it's
impossible to improve it. It's archaic, it's so on user friendly.
(24:18):
It would be just impossible to try to improve it.
It's just not improvable. But if we start from scratch,
that's when it becomes improvable.
Speaker 1 (24:26):
It's time for a break. Please stay right here and
we will be right back. Thank you for sticking around.
We continue our conversation.
Speaker 3 (24:35):
I was at a conference a couple of weeks ago
in Las Vegas, and it was for It's a conference
called Health and it's a focus on digital health but
also population health, and they talk about different solutions that
are being introduced. I was at that conference a year ago,
and what had changed in a year blew my mind,
(24:58):
and I left the conference this year more hopeful than
I've ever been after leaving a conference, I felt like
what's old is gone, and I think we have used old,
old technology, old perspectives, old design so long that it's
(25:19):
gone and what's coming now is new, and what's new
is really going to be transformative. I really felt like
we're in a good spot now. And what I liked
about it was I sometimes get so frustrated going to
conferences where it's all about research. In the caregiving space,
(25:39):
we have over researched. We reached the level of over
researching twenty years ago and we've continued to research. All
the money has gone into research and funding startups that
have gone belly up. When I loved this conference, I
felt so good about how family caregivers were being integrated.
(26:00):
So it wasn't a special solution for them. It was
a solution for all, which is what you've been talking
about family caregiver. Caregivers are integrated into the solution, which
is what we need. That's why we need it to
start over. The solutions don't that currently exist, don't integrate
family caregivers. It's the old school. And I really felt like, wow,
we are really talking about real world solutions that actually
(26:24):
help and support people and are built for people. That
was that was good. That felt really good.
Speaker 2 (26:35):
Awesome. We need all the good we can get right now. Yeah.
Speaker 1 (26:41):
I think that that that speaks to that idea of
bringing caregiving public and public into caregiving and making sure
that our institutions and our uh.
Speaker 2 (26:56):
Formal systems are they're.
Speaker 1 (27:02):
Designed for and buy and with people who are also
family caregivers, and that we bring as many people as
possible into that role of family caregivers. I think one
of the problems is that we tend to put it
on the shoulders of too few people.
Speaker 3 (27:21):
Yeah. So, speaking of trying to build something from the ashes,
so to speak, I think about a couple things that
came out of the pandemic that actually were really helpful,
like telehealth.
Speaker 2 (27:32):
Yeah, it can be extremely helpful yes.
Speaker 3 (27:35):
And the other one is clinicians being able to practice
across states. So rather than having a license that's specific
to a state, you have a license now that could
be specific to a region. So I was just reading
about a shared plan among I think it's thirty nine
states where clinicians will be able to practice within those states,
(28:01):
so it's not limited just to where they live, which
is very helpful, and it's very helpful for a couple
of reasons. There's a shortage of clinicians. If we need
more clinicians, we need need them to practice where the
need is, and they might be living in an urban area,
and the need might be in a rural area. If
we're going to serve those who live in a rural area,
(28:22):
we need clinics.
Speaker 1 (28:23):
You're talking about my area, Like I live in a
relatively small ish area, and there there's a real shortage
of just primary care doctors. And if people were, for example,
willing to travel four to six hours twice a month,
(28:47):
that might alleviate some of that. If if some physicians
would come visit on some kind of regular basis, that
that might be a way that that people here could
be served a lot better.
Speaker 2 (28:59):
And so that's awesome.
Speaker 1 (29:01):
I hadn't encountered that or realized that that came out
of the pandemic.
Speaker 3 (29:04):
I think yeah, and telehealth is one way to actually
solve that. So rather than being worried about a clinician
who has a license in California that's open being available
to actually meet with through telehealth with patients in Oregon,
but they couldn't because their license only covered them in California.
(29:25):
Now we won't have to necessarily worry about that, So you.
Speaker 1 (29:29):
Can eliminate both the physical travel and the licensing difficulties.
That's yeah, that's really good news. Now there are some
things that with medical care that can't be done remotely.
There is, yes a need or in person visits to
(29:50):
happen at some point for some visits, but maybe even
by having the telehealth option, you can reserve the in
person capability for the ones that it most needed.
Speaker 3 (30:07):
Yeah, it's not it's not the final and ultimate and
best solution, but it's a solution and it's not one
that we've had before.
Speaker 2 (30:16):
It's an interesting piece of the puzzle. Yeah.
Speaker 3 (30:19):
Yeah, and I think AI is going to change some things.
One of the things that occurred to me at the
conference in Vegas, is that AI is going to help
us organize health records from the various systems that we
actually have to use. So, depending on how many hospital
systems and physician practices you're using, you might have to
(30:42):
log into three or four different portals to access medical records.
But AI will do that for you, So you have
one account that's pulling in all that information, all that
medical record information, without you having to do anything other
than just direct your AI assistant to do it.
Speaker 2 (31:03):
Yeah, which would be really helpful.
Speaker 1 (31:05):
I've heard a lot of times from family caregivers. You know,
why can't there be a universal intake form for all
these doctors I go to and they all want the
same yes, the same questions answered over and over again.
Why isn't there a universal form that they'll accept?
Speaker 3 (31:24):
Yeah, it's infuriating. And the other piece of it is,
not only is it just why isn't there one universal form?
But why isn't it just that I tell one person
once within a care setting or an appointment or a hospitalization.
Why do I have to continuously repeat what has happened
to the various clinicians who will see me within this
(31:48):
particular period of time. Yeah, that is so aggravating.
Speaker 1 (31:52):
It does get really frustrating to some extent, I can
understand a reason behind some of it, from the sense
of for the purpose of the practitioners understanding more nuanced
details in the various telling times you tell it, or
(32:15):
even hearing whether you're consistent or not in some cases
that that could could be part of what they're listening for,
you know, Like I can see to some extent a
use in some of that, But then a lot of
it also does just boil down to like it being
(32:36):
set up to make money for the practice, to conserve
the uh, the tie the employee time at the cost
of the patients or their family member's time, and just
(32:57):
just being disrespectful in that way. Yeah.
Speaker 3 (33:02):
Yeah, my mom was hospitalized and she was seriously ill
in twenty fifteen. She went through the emergency room, then
to the ICU, and then she was finally stabilized and
moved to a regular room. And she was moved to
a regular room on a Saturday, And this was a
big day because she had almost died and we were
(33:22):
so happy that she was out of ICU and seeming
to recover, and then boom, she had a huge event
and so she went back to ICU. So she had
been in the same hospital for three plus weeks, emergency room,
ICU General floor, back to ICU. When she returned to
(33:44):
ICU just a few hours after being moved off ICU,
not even days, just right, Yeah, it was our same day.
The physician who was on call, who went in to
see her and I happened to be in the room
with her, said, Sally tell us, I mean, it's comical. Really,
(34:05):
my mom is like literally almost dying. And the physician
says to her, Sally, tell us, what brings you to
the hospital today. It's like, what are you talking about?
Speaker 1 (34:14):
I said, she's you know, I do you not see
the stack a record from the last three weeks?
Speaker 3 (34:20):
I said, why are you asking her this? It's all
in your medical works. I have to ask her this.
Oh my god. I had to leave the room because
I thought I am not really a violent person, but
I'm going to be violent here. What are we doing?
You could see this stress and the family in the room,
like we were all just devastated that here we thought
(34:41):
we had got her to recovery and now she's back
to almost dying. And then for a physician to just
walk in as.
Speaker 2 (34:47):
If, huh, what's going on?
Speaker 3 (34:49):
Yeah'sah, so tell me what brings you to the hospital today.
What are you talking about. That's the kind of stuff
that happens that's set up for the system that is
in creating degrading stressful for carries and family caregivers, completely unnecessary.
Speaker 1 (35:08):
Yeah, yeah, that's a really I I can only imagine
how frustrating and and.
Speaker 2 (35:19):
How how angry that would make you.
Speaker 1 (35:23):
That's not right for you to be in this institution
that's been providing care for three weeks, for three weeks,
and a representative of this institution walks in and says
what's going on?
Speaker 3 (35:40):
Like so that would be an institution that would call
itself patient focused care. So what I say to that is,
you know what I'll just say. I'll just say two
letters BS. That is BS, because that is not patient
focused care in any way, in any way.
Speaker 2 (36:00):
Yeah, Yeah, I'm sorry that happened.
Speaker 1 (36:03):
That's really yeah, really frustrating. So, you know, data access
to data. If the practitioner we're using the data that
they have collected, then it could be a more seamless
(36:26):
experience and they could get uh to.
Speaker 2 (36:31):
Providing the care for you. Mom a lot quicker.
Speaker 3 (36:34):
Yeah, might you know, read the medical record before you
go into the hospital and then just say something that
actually reflects the reality of what's happening, which is, oh
my gosh, Sally, have you been through the ringer, I'm
so sorry to see you back here, and then say
tell me what happened, but don't act like she just.
Speaker 4 (36:54):
Walked into the hospital system and had no record of
being there for three weeks. That is the piece that
just really it really got me, just that the physician
didn't have any sense of being empathetic and able to
actually manage that situation with.
Speaker 3 (37:12):
A few simple sentences. That's all she needed to do.
That's all she needed to do in esten, She just
needed to read the records and then read the room
and then act appropriately.
Speaker 2 (37:24):
Yeah.
Speaker 1 (37:25):
Yeah, Ultimately, how did your mom do?
Speaker 3 (37:32):
She did recover, She never recovered to her previous status.
She had a stomach bleed that started on a Saturday,
and they were not able to actually oh she had
so many things that went wrong. Oh gosh, but they
weren't actually effective with the traditional intervention to stop a
stomach bleed. So she had something like twenty five different
(37:56):
blood transfusions. She had three or four different interventions that
weren't successful, and finally they did emergency surgery that to
remove a third of her stomach and that's what stopped
the bleeding. She never fully recovered. She went to rehab
and she did get better. Unfortunately, then she was diagnosed
(38:17):
with Parkinson's. But the delay of her Parkinson's diagnosis I
think is related to that hospitalization because so many things
changed for her that it was hard to understand what
else might be happening, right, and so anyway.
Speaker 1 (38:33):
It would take any one time to sort out a
change as a result of those events that just happened
versus a new disease process.
Speaker 2 (38:46):
That's sounds pretty unrelated.
Speaker 3 (38:49):
Like, yes, exactly, that's exactly what happened.
Speaker 2 (38:53):
Yeah, yeah, and.
Speaker 1 (38:54):
You would be thinking anyone would be thinking that changes
would have been due to.
Speaker 2 (39:03):
These recent events, yes exactly. Yeah, yeah, wow, that's.
Speaker 1 (39:15):
That's that's quite an experience to go through. And some people,
for whatever reason, don't respond to the conventional treatments. And
if you get further and further down those lines where
it's not working, it gets Ah, that's where it gets
(39:42):
super intense, and it can be scary, and when you
know you're in a long haul kind of kind of
thing until you figure it out.
Speaker 3 (39:52):
Yeah. Yeah, that's when your panicstricken.
Speaker 2 (39:55):
Yeah yeah.
Speaker 1 (40:00):
And thank goodness you know that there is so much
modern medicine and there are so many things to try
and and that there are even organized protocols that are
generally going to work or structured in a sensible way.
It was really wonderful talking with you, and thank you
(40:22):
for your time. You have a wide variety of offerings,
including the tool that we've talked about for people to
get some of their own numbers written down in front
of them.
Speaker 2 (40:33):
I would highly encourage people to go.
Speaker 1 (40:38):
To the carrier's website, Carrying our Way dot com and
check it all out, participate in some of the events
that you hold, and you you bring us together in
quite a few different ways too, which is a big
service that you do and I appreciate that. And thank
you for being on today. Thank you for we are
(41:00):
bringing an emphasis to data around care. And do you
have any closing words, anything you want to add that
we haven't covered yet.
Speaker 3 (41:12):
Yeah, just thanks Lisa for all you do, and thanks
to all the listeners for all you do. You do
a lot, and it's important to receive that acknowledgment, I'll.
Speaker 1 (41:21):
Be participating in an event that Denise is hosting on
November twentieth, entitled The Data Story of Caregiving. I would
love for you to join us at that online event
and get tickets at event right, and I will put the.
Speaker 2 (41:37):
Link in the show notes.
Speaker 1 (41:42):
I'm Lisa Hudy and this has loved usn't pay the bills.
If you've enjoyed the show, please tell a friend. People
(42:02):
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