April 10, 2024 • 59 mins
Are you curious about end-of-life care and the importance of hospice services? In this episode, you'll hear from a seasoned professional, Barbara Karnes, who found her calling in supporting individuals and families during their final journey. From her unique journey into the field to valuable insights on hospice care, this episode is filled with heartfelt stories and practical advice.
Tips:
- Start Researching Early: From the moment of diagnosis, begin researching hospice services to make an informed decision.
- Utilize Hospice Services: Hospice care provides comprehensive support, including nursing visits, home health aid, social workers, and chaplains, all covered by Medicare or insurance. Take advantage of these services to enhance the quality of life for the patient and their family.
- Communicate Your Needs: If you're unhappy with your current hospice provider, don't hesitate to voice your concerns and explore other options.
- Embrace the Moment: Focus on making each day special for your loved one, bringing joy and love into their final moments.
If you or a loved one are facing end-of-life decisions, listen to this episode for valuable insights and guidance from Barbara Karnes wealth of experience in hospice care. Gain a deeper understanding of the dying process, learn about the role of hospice, and discover how to provide compassionate support during this challenging time.
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To ask us your questions or to share your story, email us at podcast@connect-empower.com.
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John & Erin
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
John (00:10):
Hi, I'm John.
Erin (00:12):
And I'm Aaron.
You're listening to connect andpower the podcast that proves
age is no barrier to growth andenlightenment.
John (00:19):
Tune in each week as we break down complex subjects into
bite sized, enjoyable episodesthat will leave you feeling
informed, entertained, and readyto conquer the world.
Erin (00:33):
If it has to do with death and dying, Barbara Karnes, a
registered nurse, is talkingabout it.
Her articles have been featuredin the New York Times, USA
Today, the Huffington Post,Thrive Global, and the
Washington Post, among others.
Awarded the NHPCO InnovatorAward for her decades as an end
(00:56):
of life educator and for hericonic booklet, Gone From My
Sight, The Dying Experience,AKA, also known as the Little
Blue Hospice Book.
Barbara's career spans fourdecades and began as an early
hospice pioneer during the AIDScrisis.
In addition to many years shehas spent at the bedsides caring
(01:19):
for patients and their familiesas a nurse.
Barbara has also served asExecutive Director of Hospice
and various home healthagencies.
John (01:29):
Let's warmly welcome our guests, Barbara Carnes.
Thank you so much for beinghere.
Barbara Karnes (01:34):
Well, thank you for inviting me.
Erin (01:36):
We're excited to have you, and I've always been curious
when people go into a certainjob or certain profession,
really what is it that drewthem?
So I was wondering if you couldshare your story.
Did hospice call to you?
Did you have an experience?
What was it?
Barbara Karnes (01:52):
let's start with, I graduated from nursing
school.
And.
Do I dare say 1962 and thoughtI'd made a huge mistake.
It's like I should have neverbeen a nurse, should have been a
social worker.
Um, but because of that, I neverworked in the medical arena.
(02:15):
I got married.
I raised a family.
And in the early to mid 70s,Elizabeth Kubler Ross came
forward and said, Americans arenot treating their dying
appropriately.
And I spent a week with her, uh,in a workshop in California, and
(02:39):
I thought, this I identify with.
This is something I could do.
So I studied.
Every self help group and bookand, and.
There wasn't anything about endof life, uh, but I thought, I
want to do this.
So, we moved to Kansas City, andI wanted to make friends, so I
(03:05):
went to a Unitarian Church studygroup on world religions.
And you know, you go around thecorner and introduce yourself,
and I said, I'm interested inhospice.
Sitting next to me, the was thevolunteer coordinator of a
(03:26):
hospice.
John (03:27):
Wow.
Barbara Karnes (03:28):
And talk about synchronicity.
So he said, we are hiring an RN.
I want you to come interview.
And I had done a refreshercourse in nursing.
So I said, well, no, um, but Iwill, and I interviewed and I
(03:48):
said, no, but whoever you hire,I will volunteer 20 hours a week
to work with her.
I would have paid them.
I just didn't tell them that sofor four months.
I volunteered and then I wasbrought on, um, as a staff
hospice nurse in hindsight, as Ilook back.
(04:14):
My never having worked in themedical arena was the gift that
I brought because I had nopreconceived ideas on what dying
was like.
And so my patients and theirfamilies, they taught me what
(04:36):
dying was like and what to do.
that's my story.
Erin (04:41):
my gosh, I'm a little teary eyed.
I'm gonna start crying.
Wow.
That's
John (04:45):
That's an incredible
Erin (04:46):
story.
John (04:46):
And in so many times, you know, I, I've been in, in
healthcare for gosh, over 10years and, and I've worked with
a lot of nurses, both in homehealth and hospice coming from
the hospitals and skilledfacilities and so forth.
And um, yeah.
Sometimes we get tainted fromthe experiences of being, doing
(05:07):
whatever we did in the differentatmospheres, whether it was a
hospital or skilled facility.
So coming in with thisexcitement, this passion, but
being so fresh and an open forthe enrichment of your clientele
must have been an incredibleexperience and made you one of a
(05:29):
kind.
Who you really are and, andbrought out that passion, even,
even more.
Barbara Karnes (05:34):
It did, you know, for five years, I did
direct patient care.
Um, and then I got intoadministration and I ended up
being the director of a coupledifferent home health care
agencies and hospices, but ofthe big things I learned.
(05:54):
Is that our medical model treatsdiseases that people have and
what end of life model is, ittreats people.
that have diseases.
And that's the appeal for me.
(06:15):
That's what, to me, end of lifework, whether it's an end of
life doula or a hospice arena,um, is that we're dealing with,
we're supporting and guiding theperson and their family, but the
(06:36):
energy isn't on the disease.
Where the energy is on theperson, and to me, that's what I
think it's all about.
John (06:48):
Oh, you couldn't, you couldn't say it even better.
I mean, that is, that is sotrue.
Um, so much of the healthcareworld is focused on symptoms and
so forth, but when it comes tohospice, it's about meeting that
person where they are and, andnot only supporting them as they
transition through this.
(07:10):
incredible part of their life,but being there to support the
families, to give them anunderstanding and to help guide
them and support them becauseit's such a, such an emotional
time, such an emotional time.
And there's so many different.
Things in the moment that, thatpeople are going through this
experience, you know, and it canchange from person to person in
(07:32):
a family.
Not everybody experiences it thesame way.
And uh, you know, one of thethings that when I've been
involved in hospice that I'vesometimes been frustrated with a
misunderstanding of hospice iswhen to bring somebody.
On for hospice and I've alwaystold people, gosh, when they can
(07:53):
qualify, get them on it becauseit's such an amazing support
system and so many people waituntil last minute.
Right?
They think we got to wait untilmom or dad or whoever is gasping
their last breaths.
Then that's when you bring themon hospice.
And so if you could just share alook.
(08:14):
With our audience, um, what youfeel is best for each patient.
Barbara Karnes (08:21):
Well, in regards to a hospice referral, um, I
believe from the moment ofdiagnosis, from the moment that
a physician says, I can't fixyou, That that's the time that
you start researching hospices.
(08:44):
Um, if I was going to buy a newcar, I would test drive all
kinds of different cars and Iwould.
Google all about these carsbefore I made my decision of
which car I wanted.
Our medical society andenvironment today is we take
(09:07):
what we get and we don't reallyquestion very much in regards to
our medical care.
I believe that the moment fromthe moment of diagnosis, you
start doing your research, thereare hospices there in more than
one in most areas where peoplelive.
(09:31):
And so.
Call them up on the phone, uh,talk to them if you like what
they say and there's variousquestions you ask them and then
make your decision from, basedfrom knowledge, not from fear,
dad is dying and I don't knowwhat to do.
(09:52):
So once you've made thatdecision.
Depending upon the diagnosis,depending upon the amount of
time your physician isguesstimating, and no numbers,
never listen to the numbers, youwant, are we talking years, are
we talking months, you know, butno numbers.
(10:14):
if they're talking months, andyou've been diagnosed with a
life threatening illness andyou're not receiving treatment
anymore, that's the time to doyour research and get on
hospice.
People associate hospice withdying and what I want people to
(10:34):
see is that hospice can helppeople live.
The very best that they canwithin the confines that their
body and disease has put themin.
But you want to be able to liveuntil you're not.
And the fear and the lack ofknowing, uh, what to expect, you
(11:00):
need some support.
And hospice or end of lifedoulas can give you that support
and guidance.
Erin (11:08):
Are there specific questions a family should ask?
Barbara Karnes (11:11):
The one that I, yes, I, this is according to
Barbara.
This is just Barbara.
I would ask if there is primarycare nursing.
You want the same.
You want you want the samesocial worker, you want the same
home health aide, and you wantthe same chaplain.
(11:32):
And that's how you develop arelationship.
That's how you develop a trust.
And more and more hospices, I'msorry to say, are not using
primary care nursing.
They're sending in whoeverhappens, that they happen to put
on the schedule.
(11:52):
And you can't develop arelationship.
like that.
I also think you need to askabout, do they have a hospice
house?
And how does your hospice housework?
Is it just for inpatientMedicare reimbursement?
Or can I do private pay?
(12:14):
Um, that I think is an importantmisunderstood question that you
need to know.
Um, if dementia, Ah, that's awhole nother topic.
If dementia is part of thediagnosis, then you want to ask
(12:40):
and have them, the hospiceexplain, um, the possibility of
them coming off service if theydon't decline fast enough.
And to know that their socialworker will help you find
additional care.
If you have to come off becauseso often, you know, it's, gee,
(13:03):
I'm sorry, dad hasn't declinedfast enough, so we have to take
you off and this family is leftnow paying for their
medications, having to get ahospital.
Middle bed, you know, doing homehealth aide, most people can't
afford it.
Um, so have that social workerhelp plug the family into
(13:28):
community resources until thepatient, it's time to go back on
John (13:34):
Yeah, I'm so glad you brought that up because another
thing that I think the familyshould be aware of is when you
bring a loved one on thehospice, please don't dismantle
their room and just give awayand get rid of all of their
stuff like their bed andeverything, because sometimes,
like you said, somebody doesgraduate off hospice or they
(13:54):
come off hospice and if all youhave is a hospital bed and you
know, the different things Thedifferent supportive systems for
that person.
If suddenly, you know, that'sall they have left.
They're going to be paying forthose if they come off hospice
because hospice, um, and I'dlike to you to share a little
(14:15):
bit about the hospice benefitand what it covers as far as
cost and stuff
Erin (14:21):
Barbara, when you were talking about, hospice house, I
don't think some listeners mayknow what that is.
If you could briefly Kind ofexplain what that is
Barbara Karnes (14:30):
A lot of hospices now have what they call
a hospice house, and It can bein a nursing facility.
Generally, it's freestanding.
And you have around the clockshift work.
It would be like being in anursing facility, only they're
(14:53):
generally smaller.
and, You have 24 hour nursingcare, home health for bathing,
um, and they accommodate thefamily where they generally have
a kitchen, kitchen and a diningroom and a TV room and a get
together, you can bring your dogand cat, you know, it, a hospice
(15:16):
house tries to Create a homelike environment in which a
person can live until they'renot, that they can die there.
Our hospital system is, ourmedical system is, a hospital
really isn't a place to die.
(15:37):
nursing facilities, are a placewhere you can go to die and
there's often, a relationshipwith a hospice, but a hospice
house is specifically for thosepeople who are facing the end of
their life.
The question is, How is itreimbursed and will you, they
(16:02):
let you stay there under privatepay?
Those are your two majorquestions because oftentimes
Medicare says what, seven to 10days, I believe.
and families don't know that.
And so the, their loved one hasbeen in this hospice house for.
(16:24):
five, six days and the hospicesays, you know, we're going to
have to move dad.
You can either move him to afacility or nursing facility or
take So you need to ask thatquestion.
Some houses will let you stayunder private pay, but others
(16:45):
won't.
John (16:46):
Thank you.
Yeah.
Thanks.
And then a hospice house alsojust so that our listeners know
that's not an individual housefor just one person.
There are other people that livein the hospice house as well.
Um, it's usually a smaller home.
It's not like a large assistedliving.
It's more of a, a a small orintimate environment with maybe
(17:08):
5 to 10 rooms or something, uh,where there's a lot of
oversight, a lot more staff thansay an assisted living where
they have that round, round theclock, um, supervision and help,
correct?
Barbara Karnes (17:21):
Yes, absolutely.
John (17:22):
Okay.
when it comes to hospice, a lotof our listeners are unaware of,
you know, how hospice works asfar as, okay, what's the out of
pocket expense.
And a lot of people fear thatand there's a delay on getting
their loved one on hospicebecause they think there's going
to be a big expense attached tothat.
So can you share a little bitabout how that works?
Barbara Karnes (17:46):
One of the great assets of hospice is that
they're, they pay for a lot.
Let me put it that way.
You come on to hospice in yourhome, um, or you can go into a
hospice in a nursing facility,but the nursing facility you're
(18:06):
paying for.
All right.
So, but let's talk about in yourhome.
And, Nursing visits, home healthfor bathing, home health aid
comes in to do the bathing.
You have access to a socialworker and a chaplain.
Your medications are paid for asthey relate to the life
(18:30):
threatening illness that youhave.
That would be pain management.
To really.
To begin hospice, you have tosay, I recognize that treatment
is not in my future.
That future is not what we'reworking with here.
(18:54):
Death is going to be the endresult, but I want to live the
best I can until I am dead.
And hospice will help me dothat.
So the expense, really, for thepatient and the family is
nothing.
Medicare pays, if you're onMedicare, Medicare pays for the
(19:18):
visits, it pays for themedicine, it pays for
everything.
And that's the plus.
Um, A lot of insurancecompanies.
Also have hospice benefits, youhave to if you're not Medicare
age, then you would check yourinsurance to see if they indeed
(19:42):
have hospice coverage, and a lotof them do.
So it's during a time whenmedical expenses are just
overwhelming.
To have an end of life servicewhere everything is paid for is,
(20:03):
can I use the word, a relief?
Erin (20:05):
hmm.
John (20:06):
hmm.
Uh huh.
Barbara Karnes (20:06):
it's a very big benefit.
John (20:09):
Yeah, that's wonderful.
Now also, as far as like,
Barbara Karnes (20:13):
Wait, can I say one thing?
Hospice does not provide shiftwork.
You will not have an eight hour.
or a home health aide in yourhome.
They make visits and thosevisits will last 45 minutes to
(20:37):
an hour routine for a routinevisit and it can be longer if
you need more.
Um, if death is very, veryclose, they'll often stay and
support the family during thatimmediate dying time.
But you can't hire them.
(20:59):
And that can be a misconception,so I want to make that clear.
John (21:03):
I'm so glad you had that you, it was like you read my
mind.
Cause that was my next question.
I know that with home health,the big difference with home
health and hospice isintermittent visits.
And so with, with, there arestill intermittent visits.
However, you can increase thosevisits if needed be based on the
progression.
Okay.
(21:23):
of the disease or illness.
So if somebody gets worse, theycan increase those visit times
and, um, and it's also, um, 24hours.
So it 365 days a year.
So they're your emergencybutton.
So is that correct?
Barbara Karnes (21:44):
There, there is someone on call 24 seven.
Um, and if they can't answeryour question or your concern,
they are to make a home visit,even if it's three o'clock in
the morning.
and I think that home health, orat least the agency I ran, you
(22:07):
couldn't hire.
Nurses either for home health.
there's a lot of similaritiesbetween home health and hospice
from a medical standpoint.
It's just that hospice goes astep further and provides more
emotional, guidance volunteers.
(22:30):
Which is a whole nother area totalk about is Volunteers will
come maybe Weekly for a fewhours so that the caregiver can
go to the grocery store, maybejust take a nap So that's also a
part of hospice services
Erin (22:52):
I was going to ask, um, as you're taking care of your
family member and then youswitch over to hospice and now
you're caregiving for the personthat is passing.
How does that care?
How do you, does it change?
What's the difference, right?
How do I care for themdifferently now?
Barbara Karnes (23:10):
Well, you have more as a caregiver, you have
more support because now you'vegot a home health aide coming in
to do the bathing.
you have, a social worker whowill come in and you can say,
you know, I'm having a real hardtime today.
I think that I'm going toscream, you know, and that
social worker will support andguide you.
(23:31):
You have, uh, the nurse thatunderstands pain management.
Not all, people dying, have adisease that causes pain.
But if they do, then hospice isexpert in pain management.
So you've got that support aswell.
(23:52):
I think that The comfort for thecaregiver that really isn't
found in our medical model isthat hospice looks after and
supports the caregiver, thefamily, as much as they do the
(24:14):
patient.
And in our medical model, wetake care of a person, a
patient.
In hospice, We take care of thewhole family in addition to the
John (24:28):
you were talking a little bit about volunteers, I know
there's different disciplinesthat work to, you know, in
hospice, there's your nurse,there's your certified nurses
assistant that helps withbathing and so forth, your home
health aid, there's a chaplain,there's volunteers and so forth,
and it's great to have that teamas your consistent team that's
(24:49):
always in there.
Taking care of the patient, butis, are you required to have any
of those services?
Or can you say, you know what?
We don't want, a chaplain or wedon't want this part of the
hospice benefit.
You can choose what you want,correct?
Barbara Karnes (25:05):
Absolutely.
I don't want any volunteers.
I don't want someone strangecoming into my house even though
they are trained extensively inend of life.
I'm a big proponent of havingyour volunteer to become your
best friend and someone you cantalk to.
but no, you can say.
(25:27):
I'm going to bathe mom everyday.
I don't want, I don't need ahome health aide.
John (25:35):
Yeah,
Barbara Karnes (25:37):
Or, you know, I don't want to talk to a social
worker.
Social workers have a bad rapand I'm really sorry about that
because social workers areamazing.
They have incredible listeningskills and guidance But you can
say other than one.
Medicare requires you have onesocial work visit.
(26:01):
but after that, no, you can say,no, I don't want to.
I strongly recommend that you douse those services because
they're a great listener.
And so, no, you can say no, um,the key I think to hospice is
that you have to be at a placewhere you recognize that
(26:27):
treatment is not part of whatyour life is going to be about
now.
If you're still getting chemo,radiation, any of that, then
you're not eligible for hospice.
It has to be when you've said,okay, there's no more treatment.
(26:49):
I'm going to live until I'm not.
John (26:52):
So when it comes to, um, volunteers, I want to touch base
a little bit on, because there'sso many different hospices that
have volunteers that havedifferent talents that they can
offer these special clients thatare at end of life.
And can you share some of theknowledge that you have on
volunteers and what they canbring and how they add to the
(27:13):
whole dynamic of the team at endof life.
Barbara Karnes (27:17):
Volunteers go through, first let's say, remind
me to say training, but um,volunteers are just everyday,
ordinary people in the communitythat Want to be of service and
(27:38):
it may be retired nurses.
It may be retired chaplains orRetired attorneys, you know,
it's like okay.
I want to give something to mycommunity and So I'm gonna
volunteer to be work in hospiceextensive training, not just a
(28:03):
one hour in service, there'sgoing to be extensive end of
life communication skills,listening skills, all of those
are part of the volunteertraining, then you can say,
well, I want to Direct patientcare.
(28:25):
I want to be, uh, an 11th hourvolunteer, which is that I will
sit when you think death isimminent within hours.
I'll go and I'll sit there withthe patient and the family.
I, that's a beautiful,beautiful, Part of being a
(28:45):
hospice volunteer, or you cansay, um, I don't think so.
I, I'm not comfortable havingdirect patient contact.
I'll work in your office.
I'll help you file.
You know, I'll do commute.
I'll go out and talk abouthospice.
I'll talk to church groups orsenior citizen groups.
(29:09):
So there's all different jobs.
For the volunteer, the key thingis they are trained first to do
those jobs,
Erin (29:22):
That's good to know too, because sometimes you don't
know, is it just someone thatdecided to show up today and be
like, Hey, I'm here.
And then something happens andthe family's panicked and
they're relying on the volunteerand they're like, I don't know.
And then everybody's panicking.
Right.
Yeah.
John (29:37):
volunteers can be so amazing.
I know I've worked withvolunteers that do things like
pet therapy or music therapy ormassage therapy.
And it is amazing because we allYou know, all of us love pets
and animals, but these arespecialized trained animals that
are very, very gentle, very,very calm, and they bring a
(30:02):
different dynamic to, to thatpiece of end of life.
You know, music is very calming,soft touch, gentle massage.
I'm not talking deep massage,but some of those things are,
uh, part of the volunteer.
Process that, that I've beenpart of, you know, uh, and seen
with different companies that,that I've been affiliated with.
(30:23):
So, um, I love that.
Erin (30:26):
I'm curious cause you've mentioned it a couple of times
now.
You've called it the afterlifedoula.
Is that, I've heard that come upmore and more.
Could you explain a little bit?
Barbara Karnes (30:37):
end of life doulas are outside of the
medical system.
There are a variety of.
schools, courses that you can gothrough to learn end of life and
(30:57):
there, it is not a medicalcomponent.
It is a communal supportivecomponent.
You can hire, A man or a woman,who has gone through a training
program.
(31:18):
Now, when I say trainingprograms, I will say that there
are many, many, many courses andtraining programs.
So you want to research, justdon't Google and take the first
one that comes up.
You want to research to see thatit.
(31:38):
Thinks the way you think andoffers you what you want to do
in relationship to end of life.
And then, uh, the key thing is,end of life doulas are not
regulated.
There's no Course or test thatyou have to take, um, you could
(32:04):
call yourself an end of lifedoula, I suppose, and hang out a
shingle and have nothing.
Um, but those you research, justlike you're buying your car, you
research end of life doulas, youwant a, a reputable and Then, if
(32:29):
your heart says, you know, Iwant to work and end of life, I
want to help and support people,then an end of life doula, you
don't have the constraints ofsix months.
You can, and there's dementiadoulas also remind me to talk
about that, but, you can.
(32:51):
From the moment of diagnosis,you can have an end of life
doula who becomes your bestfriend for the family, for the
patient, who will guide andsupport you and has more
knowledge than your neighbor,has in supporting you.
And They haven't worked out feesyet, some have, some haven't.
(33:18):
so it's new, it reminds me ofwhen I started in hospice.
in what, 1980?
Um, because we weren't, we wereseated the pants, here's what I
think I ought to do.
And.
That's kind of where end of lifedoulas are, and I identify as an
(33:40):
end of life doula because thatwas the end of life care that I
gave.
And over the years, hospice hasbecome more and more
medicalized, and more of abusiness.
And in my mind, that's affectedsome of the quality hospice
care.
John (34:00):
now talking about the quality of hospice care, I
totally agree with everythingyou're saying, but there's no do
overs when it comes to hospicecare, and so once a team signs
the agreement to utilize acertain company, are they forced
to carry through that agreementall the way to end of life, or
if they're unhappy with the typeof treatment that's being
(34:22):
provided to their loved one, canthey Fire that hospice and
utilize a different company.
Barbara Karnes (34:29):
Absolutely.
What I recommend is if you'reunhappy, you first, you tell
your primary hospice nurse, I'munhappy.
Here's what I don't like.
And here's what I want.
And if that goes nowhere, and itdoesn't change anything, you go
to the primary clinical directorand you say, I've talked to the
(34:51):
nurse.
I'm unhappy.
Here's what I want.
Here's what I'm not getting thatdoesn't work.
Then go to the director of thehospice, the CEO of the hospice
and say, I've done these steps.
Nothing's happening.
And that's where you say, if youcan't fix this, I'm going
(35:12):
someplace else.
Erin (35:14):
Yes.
Barbara Karnes (35:15):
then you, um, Find your new hospice, call
several, interview, say, I'm inthe hospice program, at such and
such, and I'm unhappy, and whatcan you do for me?
Here's my needs, what can you dofor me?
And if you find a hospice thatmeets your needs, and I hope you
(35:37):
do, then you say to thathospice, I'm going to switch,
how do I do it?
And they will help you.
Switch.
John (35:47):
But don't fire the hospice company without finding another
one beforehand because you don'twant to, you know, a space of no
support that could, that couldcreate a lot of stress.
Erin (35:59):
You told us to bring up, I believe you said train earlier
and also dementia doula.
Barbara Karnes (36:05):
Dementia doula.
This is new.
That's beginning out there.
And Dementia doulas are men orwomen that are being trained not
only in end of life, but indementia.
(36:26):
And they don't have the sixmonth prognosis.
Dementia doesn't play by therules.
I mean, you can be at death'sdoor for years, if you have
dementia.
So, the Dementia Doulas supportthe patient and the family and
help everyone live in the momentbecause that's the key to Living
(36:51):
with and supporting someone whohas dementia.
The only thing that reallymatters in dementia is any given
moment.
And those doulas can support andguide the family.
It's a long haul.
the disease doesn't play by therules.
(37:12):
And at this point in time, wedon't have a lot of support for
the caregiver.
that's why I am really excitedabout this new, dementia doula.
John (37:27):
Yeah.
Well, I haven't heard of that.
We definitely want to researchthat and find more information.
Barbara Karnes (37:33):
All right, Oh, Teepa Snow has a website.
She's, a pioneer in dementia andthat would be a good place to do
a little research.
Erin (37:44):
Now I know, um, my father passed away almost three years
ago and I used to own acaregiving company and I've seen
it from other perspectives andbeen by the bedside, but to do
my own was different.
So it was.
It's interesting to experiencethat, but the steps of, that a
family should recognize, likehow do you know somebody is
going through death?
What are some of the tell signsof, oh, this is starting?
Barbara Karnes (38:08):
Okay, two, I'm going to start at the very
beginning.
There's only two ways to die.
You either die fast, heartattack, hit by a truck, suicide,
you're alive one minute and deadthe next, or gradual death.
And gradual death is either oldage or disease.
(38:30):
Gradual death has a process toit.
Two, three, four months beforedeath from disease, three things
start happening.
Eating habits change, sleepinghabits change, socialization
habits change, and it's all on acontinuum.
(38:51):
So, months before death, aperson gradually stops eating.
Starts with meat, and, oh, thatjust tastes awful, I can't eat
this meat.
Then pretty soon, on thiscontinuum, it's fruits and
vegetables.
Then it's soft foods.
Then you're doing good to get aprotein supplement down.
(39:14):
Ice cream, ice cream goes a longway, but you can get ice cream
almost to the end.
And then in the, I would saydays before death, you're
probably not getting anythingdown them.
In the weeks before death,you're doing good to get water
in them.
mean.
Food is the gas we put in ourcar to make it run.
(39:37):
And so it's perfectly normal andnatural that we will gradually
stop eating.
We start withdrawingsocialization wise from the
world, not interested in thefavorite football team.
And then pretty soon it's, ah,don't have the neighbor ladies
come over.
And then it's, ah, don't havethe grandkids come over.
(40:01):
And the person graduallywithdraws into themselves.
And the third thing is sleep.
Months before death, afternoonnap.
Pretty soon it's a morning andan afternoon nap.
And one day they don't get outof bed.
And then they're asleep morethan they're awake.
(40:21):
Those are the things you lookfor that say, Months before
death, then there are changesthat occur one to three weeks
before death, which I calllabor, and we go through labor
to get into this world, and wego through labor to leave it,
and there's a lot ofsimilarities, and we can relate
(40:44):
and understand thosesimilarities.
One to three weeks, a person tostart sleeping with their eyes
partially open.
They've got random handmovements.
You just agitate it, can't getthem settled.
they're picking at theirclothes.
Sometimes they're, they'll talkto you very, very clear, other
(41:08):
times not so much.
Those are kind of the key laborsbegun.
And then for the delivery, whichis days to hours, the person is
generally non responsive.
They start breathing like alittle fish breathes when you
(41:28):
take it out of water, that open,closed.
Their breathing gets slower andslower.
Their hands and feet getpurpley.
Their body's cold.
Um, their eyes are still at halfmask.
And their breathing gets slower.
And slower until they're notbreathing.
(41:50):
Now I'm going to tell you onething that most, I get letters
with a lot and so people need tounderstand.
I equate the delivery as Likebirth, you know, some women can
sneeze and out pops the baby andother women, 36 hours later,
(42:14):
they're still trying to pushthis little guy out.
Some of us can get out of ourbody easier than others.
And that final push to get outof this body isn't always
pretty.
You know, there's.
stuff running out of theirmouth.
(42:34):
There's body awkward movementsand gasps and facial expressions
that you go, Oh, what is this?
You know, sometimes their sound,just like pushing that baby out
isn't necessarily pretty.
So it is to get out of thisbody.
(42:55):
that's dying.
John (42:57):
Yeah.
Wow.
And that's, you know, I wasthinking as you're talking about
that, I was thinking about someof the hospice experiences I've
been through with the wordterminal agitation, right?
Where, where, um, There's such amisunderstanding, and if you
don't have a really greatsupport system, meaning a
wonderful nurse that can walkpeople through and help them
(43:18):
through that process, it canbecome very, very traumatic for
the loved ones that are going,what's, what's happening?
So thank you for explainingthat.
Barbara Karnes (43:28):
Well, and that's why I have written Gone From My
Sight, which explains, um, thedying process, starting months
before death and right up to themoment.
Because we don't have any rolemodels.
You can look at this little 14page, large print, 5th grade
(43:50):
level booklet and go, oh, yeah.
Mom's doing this.
Oh, it must not be pathologicalbecause it's here in the book.
And then the companion is,here's what you can do while mom
is leaving her body.
So one is, here's what'shappening.
(44:10):
The other one is, here's whatyou do while it's happening.
Erin (44:14):
Will you say the name of the book again and its nickname?
Barbara Karnes (44:17):
Ah, gone from my sight, and it's called The
Little Blue Book, or The LittleHospice Blue
John (44:24):
Yeah, every hospice company should have boxes of
them in their company that theygive to the patient.
Um, when they come on service,it should be something that's
bedside that that helps themthrough that process.
And so, yeah, I know that I'mgoing to tell any hospice
company I communicate with, youknow.
You need to connect with Barbaraand you need to get at some of
(44:46):
her copies of books because Ithink it'd be so helpful.
It'd be so incredible to havethat.
Erin (44:51):
But what's neat too is if you get a chance to go to her
website and it'll be linked tothe bottom of the blog for this,
um, you also have a bunch ofother books too, right?
There's a bunch of other, if youwant to share that cause it's
just fascinating.
Barbara Karnes (45:06):
Well, what I've done is, whenever I've seen a
need, then I've addressed it.
I saw a need that families needto understand the normal dying
process.
That was gone from my sight.
Families need to know what to doduring that time.
(45:28):
That's the 11th hour.
But I also wrote a book ondementia.
because dementia doesn't play bythe rules.
I wrote a booklet on painmanagement, because pain
management at end of life isdifferent than pain management
for people who are going to getbetter.
(45:49):
And I also wrote a booklet ongrieving.
A lot of people use it as asympathy card, write your
condolences on the inside cover,and it just touches on the
normal grieving process.
So that you can look at it andgo, Oh, I'm not crazy after all.
(46:11):
It's right here in the book.
All my materials, fifth gradelevel, short, large print,
short, simple, direct, butgentle.
Erin (46:21):
Well, and I think that's been one of our big missions is
really to get people to beproactive instead of reactive.
So I say now, if you have agingparents, if you're older, it
can't hurt you to start readingand researching and know what's
in your future, your possiblefuture that that's just my
opinion.
John (46:41):
And educating, educating children and stuff too, because
a big part of the dying processis the grandchildren are saying
goodbye to grandma or grandpa.
And if you have copies of yourbooks to help them understand
the process, it's not as scaryor traumatic for them.
Right.
And so, um.
I think what you're doing isamazing.
(47:02):
I'm I'm excited to get a copy ofthese books
Erin (47:05):
well, I wish I had the grief one because when my dad
died, I'm the oldest of seven.
My mom was of course grievingand then each of us children
were grieving in our own ways.
And, and as having a partner whohasn't gone through it, trying
to understand our grievingprocess, I feel like if we'd had
those books and had read thembefore, it It would have been
(47:25):
easier for everybody to kind ofcommunicate and go.
Oh, you're mad right now, andand it's okay It's not me.
It's just that's your grievingright now, and you know those
different processes
Barbara Karnes (47:36):
Yep, knowledge reduces fear and fear is a huge
part of our life when you'redealing with end of life.
We don't have any role models.
Grandma used to live at home,and she died at home, and the
(47:57):
family was there, and weunderstood this is a normal,
natural process.
But over the years, Grandmamoved from being at home dying
into the hospital dying.
And there she died at the end ofthe hall, with no one there.
And then we went from grandmadying in the hospital to grandma
(48:21):
dying in a nursing facility.
And again, often the family isnot there.
Uh, and when the family isthere, they don't understand.
They think somethingpathological is happening.
We're coming full circle.
We're now coming back to Grandmaat home.
(48:43):
With end of life doulas, withhospice.
We're back with Grandma in herbed, with the cat on the end of
the bed, and the grandkids.
there and their support.
So we're learning again howpeople die naturally and my hope
is that that in itself willreduce a lot of the fear that we
(49:11):
bring.
The more that have thisconnection with end of life,
then the more we can help othersand provide comfort and
direction and support andcompassion.
John (49:30):
Another question I was curious about from my dad and I
always thought If they're up inthe middle of the night and they
wanted to go outside or theycouldn't sleep, some people are
like, no, you have to stay inbed.
Don't come out.
Stay here.
Whereas I doubt if you want towalk outside at three or four
o'clock in the morning, let's gofor a walk somewhere.
And I wanted to get your takethe pros or cons of what to not
(49:53):
to, should someone do?
Barbara Karnes (49:58):
I think as caregivers, and that's family, a
big wide range there of who I'mtalking about.
Our goal, I would like it to beTo make each moment of our
(50:20):
special person's day, life,until they don't have it
anymore, every day special.
Bring joy, bring love every day.
It's, you know, most of us liveeither in the past, which is a
(50:41):
memory, or in the future, whichis a possibility.
Very few of us live in themoment, which is the only real,
real thing.
So if we can.
(51:02):
support and love our person inthe moment.
I think that's the gift we cangive our special person.
Erin (51:15):
Well, I'm like, I've been trying not to cry this whole
John (51:18):
episode.
I'm like, I'm like, it's coming.
And then she gets emotional andI wind up getting emotional.
It's like same thing.
She eats something.
I wind up eating something.
It's like, I don't know.
How we're attached here,
Erin (51:30):
but almost like we're
John (51:32):
so so I'm going to, I'm going to ask a quick question
that cause I know she has aquestion at the end of this,
that she wants to share that sheasked everybody.
And I love her question as well.
But mine is, is how do you keepthe passion going?
Right?
So there's so many people thatget in different minds of work
and you've been in this.
And this for decades, you'vebeen doing this for many, many
(51:53):
years, giving to so many people,enriching so many people's lives
and sharing your passion for,for what you do through
education, through your books,your experiences, which I feel
is just phenomenal.
And there's so many people thatget into career fields, you
know, and they, they stopbecause they're bored or they're
agitated or not enough money.
(52:14):
What keeps you excited abouthospice and your passion for
writing these books andsupporting people?
Barbara Karnes (52:22):
Well, is it going to sound funny if I say I
think that's what I'm on thisplanet for?
I, I think that that's, that'smy work is to educate, about end
of life.
Uh, I look back at my life andeverything seemed to fall into
(52:43):
place without me doing anything.
And so it's kind of like, yeah,this is my purpose.
This is what I'm here for.
I take care of myself.
I watch movies.
I laugh.
I recognize, that I must takecare of myself as anyone who
(53:05):
works in end of life.
Anyone who works in anythingneeds to take care of
themselves.
That's really important.
And that life is special.
Uh, life is, can be beautiful.
You know, I will say, this willexplain me.
(53:25):
Every night, after I turn mylight out, I ask myself, what
did I trade a day of my lifefor?
What did I do that brought mejoy?
That fulfilled me?
Those are the things that Ithink we're on this planet for.
(53:46):
Or at least I'm on this planetfor.
And that kind of keeps me ontrack.
John (53:51):
Wow.
You know, knowing your purpose.
There's so many, so many peoplein this world that don't, right.
And they're always questioning,why am I here?
What am I, what is my objective?
But it's so beautiful that youfound that and, and you're
living it because I know there'sgoing to be a lot of listeners
that listen to this and getexcited about it.
But it's so true.
(54:12):
It's knowing your purpose,feeling your purpose.
It's no longer hard work.
It's no longer like a job.
Like a lot of people have,right?
It's, it's passionate.
It's exciting.
It's fulfilling.
So yeah, thank you for that.
Oh,
Erin (54:30):
I feel like we might have missed something, not miss
something.
If we've covered it off, there'ssomething you feel like, Oh, I,
I really want to share this.
Let us know if there's
John (54:40):
something.
Barbara Karnes (54:41):
always do another one.
Erin (54:43):
Oh, that's awesome.
We'll just come up there andvisit you next time.
Yeah.
So my favorite thing to know,I'm an avid traveler.
I love travel and culture andmeeting people and John, it
feels the same way.
And so we'd like to ask what ison your bucket list?
Where would you love to go andexplore or where have you been
(55:04):
that you love and would like toshare?
Barbara Karnes (55:06):
My husband and I have been avid travelers.
And we've been almosteverywhere.
You name it, we've probably beenthere.
And great memories, greatexperience, to, uh, get a
(55:27):
broader picture of people andhow they live, and how they
think.
travel broadens our world andour perception and we loved it.
We loved it.
someone was asking me justrecently, where do you want to
go?
(55:47):
I've been almost every placethat I can think of.
Erin (55:52):
Did you have a favorite?
Barbara Karnes (55:54):
Oh, Thailand, love Thailand, Iceland, as we
talked about, Iceland is, isgreat, Germany,
Erin (56:06):
you sound like you sound like me When john always asked
my favorite thing.
I'm like, I can't pick
Barbara Karnes (56:13):
I know,
John (56:14):
Whether it's food or travel, she's like, don't ask me
that.
Barbara Karnes (56:19):
because each place is unique and different
and there's beauty.
In every place, you just have tolook for it, and, reach out for
it, and it's there.
Um, what's the saying?
Beauty is in the eyes of thebeholder.
That's true.
Erin (56:38):
Yeah.
John (56:39):
Yeah.
that's great.
Well, I just want to thank youpersonally.
It's been such an incredibleexperience of being able to
connect with you and.
We feel so honored that you'reon our podcast today and we're
really trying to create, well, Ishouldn't say we're trying to
create.
She always gets mad when I saythat we are creating a movement,
(57:00):
a movement of awareness and it,it, it comes from people that
have an incredible story toshare and a ton of experience
and in certain fields as, as weget older.
And so thank you.
Thank you for everything you'veshared.
Thank you.
Erin (57:18):
I'm just grateful I made it without crying through the
whole thing.
Yeah, that would
John (57:23):
Yeah.
That would have been a little
Erin (57:24):
little awkward,
John (57:25):
in tears as we're talking to you.
Erin (57:27):
tears as we're talking.
Excuse
Barbara Karnes (57:30):
Well, thank you for inviting me.
I think we've had a reallyinteresting, helpful
conversation.
Conversation and when I sayhelpful to all those that are
going to hear this, I think thethree of us have done a good
Erin (57:47):
Oh, no, thank you.
I appreciate it.
John (57:52):
Thank you for tuning in to another episode of Connect
Empower.
We want to express our gratitudeto you for being part of our
community, and we hope today'sepisode has provided you with
valuable insights andinspiration to enhance your life
and that of a loved one.
Erin (58:07):
We are more than just a podcast.
We are a community dedicated toenhancing the lives of our aging
adults and their support system.
We encourage you to visit ourwebsite now at www.
connect empower.
com.
Explore more information aboutour guests from today's episode
and to access our freeresources.
John (58:28):
resources.
Our mission doesn't end at theconclusion of this episode.
We invite you to take action nowby sharing the knowledge you've
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Whether it's a family member,friend, or colleague, your
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Erin (58:43):
Remember, Subscribing to our podcast ensures you never
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So hit that subscribe button andstay connected with us.
Your commitment is the drivingforce behind our mission and
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as we age.
John (59:03):
I'm John.
Erin (59:04):
I'm Erin.
Until next Wednesday.
Hi, I'm John.
Erin (00:12):
And I'm Aaron.
You're listening to connect andpower the podcast that proves
age is no barrier to growth andenlightenment.
John (00:19):
Tune in each week as we break down complex subjects into
bite sized, enjoyable episodesthat will leave you feeling
informed, entertained, and readyto conquer the world.
Erin (00:33):
If it has to do with death and dying, Barbara Karnes, a
registered nurse, is talkingabout it.
Her articles have been featuredin the New York Times, USA
Today, the Huffington Post,Thrive Global, and the
Washington Post, among others.
Awarded the NHPCO InnovatorAward for her decades as an end
(00:56):
of life educator and for hericonic booklet, Gone From My
Sight, The Dying Experience,AKA, also known as the Little
Blue Hospice Book.
Barbara's career spans fourdecades and began as an early
hospice pioneer during the AIDScrisis.
In addition to many years shehas spent at the bedsides caring
(01:19):
for patients and their familiesas a nurse.
Barbara has also served asExecutive Director of Hospice
and various home healthagencies.
John (01:29):
Let's warmly welcome our guests, Barbara Carnes.
Thank you so much for beinghere.
Barbara Karnes (01:34):
Well, thank you for inviting me.
Erin (01:36):
We're excited to have you, and I've always been curious
when people go into a certainjob or certain profession,
really what is it that drewthem?
So I was wondering if you couldshare your story.
Did hospice call to you?
Did you have an experience?
What was it?
Barbara Karnes (01:52):
let's start with, I graduated from nursing
school.
And.
Do I dare say 1962 and thoughtI'd made a huge mistake.
It's like I should have neverbeen a nurse, should have been a
social worker.
Um, but because of that, I neverworked in the medical arena.
(02:15):
I got married.
I raised a family.
And in the early to mid 70s,Elizabeth Kubler Ross came
forward and said, Americans arenot treating their dying
appropriately.
And I spent a week with her, uh,in a workshop in California, and
(02:39):
I thought, this I identify with.
This is something I could do.
So I studied.
Every self help group and bookand, and.
There wasn't anything about endof life, uh, but I thought, I
want to do this.
So, we moved to Kansas City, andI wanted to make friends, so I
(03:05):
went to a Unitarian Church studygroup on world religions.
And you know, you go around thecorner and introduce yourself,
and I said, I'm interested inhospice.
Sitting next to me, the was thevolunteer coordinator of a
(03:26):
hospice.
John (03:27):
Wow.
Barbara Karnes (03:28):
And talk about synchronicity.
So he said, we are hiring an RN.
I want you to come interview.
And I had done a refreshercourse in nursing.
So I said, well, no, um, but Iwill, and I interviewed and I
(03:48):
said, no, but whoever you hire,I will volunteer 20 hours a week
to work with her.
I would have paid them.
I just didn't tell them that sofor four months.
I volunteered and then I wasbrought on, um, as a staff
hospice nurse in hindsight, as Ilook back.
(04:14):
My never having worked in themedical arena was the gift that
I brought because I had nopreconceived ideas on what dying
was like.
And so my patients and theirfamilies, they taught me what
(04:36):
dying was like and what to do.
that's my story.
Erin (04:41):
my gosh, I'm a little teary eyed.
I'm gonna start crying.
Wow.
That's
John (04:45):
That's an incredible
Erin (04:46):
story.
John (04:46):
And in so many times, you know, I, I've been in, in
healthcare for gosh, over 10years and, and I've worked with
a lot of nurses, both in homehealth and hospice coming from
the hospitals and skilledfacilities and so forth.
And um, yeah.
Sometimes we get tainted fromthe experiences of being, doing
(05:07):
whatever we did in the differentatmospheres, whether it was a
hospital or skilled facility.
So coming in with thisexcitement, this passion, but
being so fresh and an open forthe enrichment of your clientele
must have been an incredibleexperience and made you one of a
(05:29):
kind.
Who you really are and, andbrought out that passion, even,
even more.
Barbara Karnes (05:34):
It did, you know, for five years, I did
direct patient care.
Um, and then I got intoadministration and I ended up
being the director of a coupledifferent home health care
agencies and hospices, but ofthe big things I learned.
(05:54):
Is that our medical model treatsdiseases that people have and
what end of life model is, ittreats people.
that have diseases.
And that's the appeal for me.
(06:15):
That's what, to me, end of lifework, whether it's an end of
life doula or a hospice arena,um, is that we're dealing with,
we're supporting and guiding theperson and their family, but the
(06:36):
energy isn't on the disease.
Where the energy is on theperson, and to me, that's what I
think it's all about.
John (06:48):
Oh, you couldn't, you couldn't say it even better.
I mean, that is, that is sotrue.
Um, so much of the healthcareworld is focused on symptoms and
so forth, but when it comes tohospice, it's about meeting that
person where they are and, andnot only supporting them as they
transition through this.
(07:10):
incredible part of their life,but being there to support the
families, to give them anunderstanding and to help guide
them and support them becauseit's such a, such an emotional
time, such an emotional time.
And there's so many different.
Things in the moment that, thatpeople are going through this
experience, you know, and it canchange from person to person in
(07:32):
a family.
Not everybody experiences it thesame way.
And uh, you know, one of thethings that when I've been
involved in hospice that I'vesometimes been frustrated with a
misunderstanding of hospice iswhen to bring somebody.
On for hospice and I've alwaystold people, gosh, when they can
(07:53):
qualify, get them on it becauseit's such an amazing support
system and so many people waituntil last minute.
Right?
They think we got to wait untilmom or dad or whoever is gasping
their last breaths.
Then that's when you bring themon hospice.
And so if you could just share alook.
(08:14):
With our audience, um, what youfeel is best for each patient.
Barbara Karnes (08:21):
Well, in regards to a hospice referral, um, I
believe from the moment ofdiagnosis, from the moment that
a physician says, I can't fixyou, That that's the time that
you start researching hospices.
(08:44):
Um, if I was going to buy a newcar, I would test drive all
kinds of different cars and Iwould.
Google all about these carsbefore I made my decision of
which car I wanted.
Our medical society andenvironment today is we take
(09:07):
what we get and we don't reallyquestion very much in regards to
our medical care.
I believe that the moment fromthe moment of diagnosis, you
start doing your research, thereare hospices there in more than
one in most areas where peoplelive.
(09:31):
And so.
Call them up on the phone, uh,talk to them if you like what
they say and there's variousquestions you ask them and then
make your decision from, basedfrom knowledge, not from fear,
dad is dying and I don't knowwhat to do.
(09:52):
So once you've made thatdecision.
Depending upon the diagnosis,depending upon the amount of
time your physician isguesstimating, and no numbers,
never listen to the numbers, youwant, are we talking years, are
we talking months, you know, butno numbers.
(10:14):
if they're talking months, andyou've been diagnosed with a
life threatening illness andyou're not receiving treatment
anymore, that's the time to doyour research and get on
hospice.
People associate hospice withdying and what I want people to
(10:34):
see is that hospice can helppeople live.
The very best that they canwithin the confines that their
body and disease has put themin.
But you want to be able to liveuntil you're not.
And the fear and the lack ofknowing, uh, what to expect, you
(11:00):
need some support.
And hospice or end of lifedoulas can give you that support
and guidance.
Erin (11:08):
Are there specific questions a family should ask?
Barbara Karnes (11:11):
The one that I, yes, I, this is according to
Barbara.
This is just Barbara.
I would ask if there is primarycare nursing.
You want the same.
You want you want the samesocial worker, you want the same
home health aide, and you wantthe same chaplain.
(11:32):
And that's how you develop arelationship.
That's how you develop a trust.
And more and more hospices, I'msorry to say, are not using
primary care nursing.
They're sending in whoeverhappens, that they happen to put
on the schedule.
(11:52):
And you can't develop arelationship.
like that.
I also think you need to askabout, do they have a hospice
house?
And how does your hospice housework?
Is it just for inpatientMedicare reimbursement?
Or can I do private pay?
(12:14):
Um, that I think is an importantmisunderstood question that you
need to know.
Um, if dementia, Ah, that's awhole nother topic.
If dementia is part of thediagnosis, then you want to ask
(12:40):
and have them, the hospiceexplain, um, the possibility of
them coming off service if theydon't decline fast enough.
And to know that their socialworker will help you find
additional care.
If you have to come off becauseso often, you know, it's, gee,
(13:03):
I'm sorry, dad hasn't declinedfast enough, so we have to take
you off and this family is leftnow paying for their
medications, having to get ahospital.
Middle bed, you know, doing homehealth aide, most people can't
afford it.
Um, so have that social workerhelp plug the family into
(13:28):
community resources until thepatient, it's time to go back on
John (13:34):
Yeah, I'm so glad you brought that up because another
thing that I think the familyshould be aware of is when you
bring a loved one on thehospice, please don't dismantle
their room and just give awayand get rid of all of their
stuff like their bed andeverything, because sometimes,
like you said, somebody doesgraduate off hospice or they
(13:54):
come off hospice and if all youhave is a hospital bed and you
know, the different things Thedifferent supportive systems for
that person.
If suddenly, you know, that'sall they have left.
They're going to be paying forthose if they come off hospice
because hospice, um, and I'dlike to you to share a little
(14:15):
bit about the hospice benefitand what it covers as far as
cost and stuff
Erin (14:21):
Barbara, when you were talking about, hospice house, I
don't think some listeners mayknow what that is.
If you could briefly Kind ofexplain what that is
Barbara Karnes (14:30):
A lot of hospices now have what they call
a hospice house, and It can bein a nursing facility.
Generally, it's freestanding.
And you have around the clockshift work.
It would be like being in anursing facility, only they're
(14:53):
generally smaller.
and, You have 24 hour nursingcare, home health for bathing,
um, and they accommodate thefamily where they generally have
a kitchen, kitchen and a diningroom and a TV room and a get
together, you can bring your dogand cat, you know, it, a hospice
(15:16):
house tries to Create a homelike environment in which a
person can live until they'renot, that they can die there.
Our hospital system is, ourmedical system is, a hospital
really isn't a place to die.
(15:37):
nursing facilities, are a placewhere you can go to die and
there's often, a relationshipwith a hospice, but a hospice
house is specifically for thosepeople who are facing the end of
their life.
The question is, How is itreimbursed and will you, they
(16:02):
let you stay there under privatepay?
Those are your two majorquestions because oftentimes
Medicare says what, seven to 10days, I believe.
and families don't know that.
And so the, their loved one hasbeen in this hospice house for.
(16:24):
five, six days and the hospicesays, you know, we're going to
have to move dad.
You can either move him to afacility or nursing facility or
take So you need to ask thatquestion.
Some houses will let you stayunder private pay, but others
(16:45):
won't.
John (16:46):
Thank you.
Yeah.
Thanks.
And then a hospice house alsojust so that our listeners know
that's not an individual housefor just one person.
There are other people that livein the hospice house as well.
Um, it's usually a smaller home.
It's not like a large assistedliving.
It's more of a, a a small orintimate environment with maybe
(17:08):
5 to 10 rooms or something, uh,where there's a lot of
oversight, a lot more staff thansay an assisted living where
they have that round, round theclock, um, supervision and help,
correct?
Barbara Karnes (17:21):
Yes, absolutely.
John (17:22):
Okay.
when it comes to hospice, a lotof our listeners are unaware of,
you know, how hospice works asfar as, okay, what's the out of
pocket expense.
And a lot of people fear thatand there's a delay on getting
their loved one on hospicebecause they think there's going
to be a big expense attached tothat.
So can you share a little bitabout how that works?
Barbara Karnes (17:46):
One of the great assets of hospice is that
they're, they pay for a lot.
Let me put it that way.
You come on to hospice in yourhome, um, or you can go into a
hospice in a nursing facility,but the nursing facility you're
(18:06):
paying for.
All right.
So, but let's talk about in yourhome.
And, Nursing visits, home healthfor bathing, home health aid
comes in to do the bathing.
You have access to a socialworker and a chaplain.
Your medications are paid for asthey relate to the life
(18:30):
threatening illness that youhave.
That would be pain management.
To really.
To begin hospice, you have tosay, I recognize that treatment
is not in my future.
That future is not what we'reworking with here.
(18:54):
Death is going to be the endresult, but I want to live the
best I can until I am dead.
And hospice will help me dothat.
So the expense, really, for thepatient and the family is
nothing.
Medicare pays, if you're onMedicare, Medicare pays for the
(19:18):
visits, it pays for themedicine, it pays for
everything.
And that's the plus.
Um, A lot of insurancecompanies.
Also have hospice benefits, youhave to if you're not Medicare
age, then you would check yourinsurance to see if they indeed
(19:42):
have hospice coverage, and a lotof them do.
So it's during a time whenmedical expenses are just
overwhelming.
To have an end of life servicewhere everything is paid for is,
(20:03):
can I use the word, a relief?
Erin (20:05):
hmm.
John (20:06):
hmm.
Uh huh.
Barbara Karnes (20:06):
it's a very big benefit.
John (20:09):
Yeah, that's wonderful.
Now also, as far as like,
Barbara Karnes (20:13):
Wait, can I say one thing?
Hospice does not provide shiftwork.
You will not have an eight hour.
or a home health aide in yourhome.
They make visits and thosevisits will last 45 minutes to
(20:37):
an hour routine for a routinevisit and it can be longer if
you need more.
Um, if death is very, veryclose, they'll often stay and
support the family during thatimmediate dying time.
But you can't hire them.
(20:59):
And that can be a misconception,so I want to make that clear.
John (21:03):
I'm so glad you had that you, it was like you read my
mind.
Cause that was my next question.
I know that with home health,the big difference with home
health and hospice isintermittent visits.
And so with, with, there arestill intermittent visits.
However, you can increase thosevisits if needed be based on the
progression.
Okay.
(21:23):
of the disease or illness.
So if somebody gets worse, theycan increase those visit times
and, um, and it's also, um, 24hours.
So it 365 days a year.
So they're your emergencybutton.
So is that correct?
Barbara Karnes (21:44):
There, there is someone on call 24 seven.
Um, and if they can't answeryour question or your concern,
they are to make a home visit,even if it's three o'clock in
the morning.
and I think that home health, orat least the agency I ran, you
(22:07):
couldn't hire.
Nurses either for home health.
there's a lot of similaritiesbetween home health and hospice
from a medical standpoint.
It's just that hospice goes astep further and provides more
emotional, guidance volunteers.
(22:30):
Which is a whole nother area totalk about is Volunteers will
come maybe Weekly for a fewhours so that the caregiver can
go to the grocery store, maybejust take a nap So that's also a
part of hospice services
Erin (22:52):
I was going to ask, um, as you're taking care of your
family member and then youswitch over to hospice and now
you're caregiving for the personthat is passing.
How does that care?
How do you, does it change?
What's the difference, right?
How do I care for themdifferently now?
Barbara Karnes (23:10):
Well, you have more as a caregiver, you have
more support because now you'vegot a home health aide coming in
to do the bathing.
you have, a social worker whowill come in and you can say,
you know, I'm having a real hardtime today.
I think that I'm going toscream, you know, and that
social worker will support andguide you.
(23:31):
You have, uh, the nurse thatunderstands pain management.
Not all, people dying, have adisease that causes pain.
But if they do, then hospice isexpert in pain management.
So you've got that support aswell.
(23:52):
I think that The comfort for thecaregiver that really isn't
found in our medical model isthat hospice looks after and
supports the caregiver, thefamily, as much as they do the
(24:14):
patient.
And in our medical model, wetake care of a person, a
patient.
In hospice, We take care of thewhole family in addition to the
John (24:28):
you were talking a little bit about volunteers, I know
there's different disciplinesthat work to, you know, in
hospice, there's your nurse,there's your certified nurses
assistant that helps withbathing and so forth, your home
health aid, there's a chaplain,there's volunteers and so forth,
and it's great to have that teamas your consistent team that's
(24:49):
always in there.
Taking care of the patient, butis, are you required to have any
of those services?
Or can you say, you know what?
We don't want, a chaplain or wedon't want this part of the
hospice benefit.
You can choose what you want,correct?
Barbara Karnes (25:05):
Absolutely.
I don't want any volunteers.
I don't want someone strangecoming into my house even though
they are trained extensively inend of life.
I'm a big proponent of havingyour volunteer to become your
best friend and someone you cantalk to.
but no, you can say.
(25:27):
I'm going to bathe mom everyday.
I don't want, I don't need ahome health aide.
John (25:35):
Yeah,
Barbara Karnes (25:37):
Or, you know, I don't want to talk to a social
worker.
Social workers have a bad rapand I'm really sorry about that
because social workers areamazing.
They have incredible listeningskills and guidance But you can
say other than one.
Medicare requires you have onesocial work visit.
(26:01):
but after that, no, you can say,no, I don't want to.
I strongly recommend that you douse those services because
they're a great listener.
And so, no, you can say no, um,the key I think to hospice is
that you have to be at a placewhere you recognize that
(26:27):
treatment is not part of whatyour life is going to be about
now.
If you're still getting chemo,radiation, any of that, then
you're not eligible for hospice.
It has to be when you've said,okay, there's no more treatment.
(26:49):
I'm going to live until I'm not.
John (26:52):
So when it comes to, um, volunteers, I want to touch base
a little bit on, because there'sso many different hospices that
have volunteers that havedifferent talents that they can
offer these special clients thatare at end of life.
And can you share some of theknowledge that you have on
volunteers and what they canbring and how they add to the
(27:13):
whole dynamic of the team at endof life.
Barbara Karnes (27:17):
Volunteers go through, first let's say, remind
me to say training, but um,volunteers are just everyday,
ordinary people in the communitythat Want to be of service and
(27:38):
it may be retired nurses.
It may be retired chaplains orRetired attorneys, you know,
it's like okay.
I want to give something to mycommunity and So I'm gonna
volunteer to be work in hospiceextensive training, not just a
(28:03):
one hour in service, there'sgoing to be extensive end of
life communication skills,listening skills, all of those
are part of the volunteertraining, then you can say,
well, I want to Direct patientcare.
(28:25):
I want to be, uh, an 11th hourvolunteer, which is that I will
sit when you think death isimminent within hours.
I'll go and I'll sit there withthe patient and the family.
I, that's a beautiful,beautiful, Part of being a
(28:45):
hospice volunteer, or you cansay, um, I don't think so.
I, I'm not comfortable havingdirect patient contact.
I'll work in your office.
I'll help you file.
You know, I'll do commute.
I'll go out and talk abouthospice.
I'll talk to church groups orsenior citizen groups.
(29:09):
So there's all different jobs.
For the volunteer, the key thingis they are trained first to do
those jobs,
Erin (29:22):
That's good to know too, because sometimes you don't
know, is it just someone thatdecided to show up today and be
like, Hey, I'm here.
And then something happens andthe family's panicked and
they're relying on the volunteerand they're like, I don't know.
And then everybody's panicking.
Right.
Yeah.
John (29:37):
volunteers can be so amazing.
I know I've worked withvolunteers that do things like
pet therapy or music therapy ormassage therapy.
And it is amazing because we allYou know, all of us love pets
and animals, but these arespecialized trained animals that
are very, very gentle, very,very calm, and they bring a
(30:02):
different dynamic to, to thatpiece of end of life.
You know, music is very calming,soft touch, gentle massage.
I'm not talking deep massage,but some of those things are,
uh, part of the volunteer.
Process that, that I've beenpart of, you know, uh, and seen
with different companies that,that I've been affiliated with.
(30:23):
So, um, I love that.
Erin (30:26):
I'm curious cause you've mentioned it a couple of times
now.
You've called it the afterlifedoula.
Is that, I've heard that come upmore and more.
Could you explain a little bit?
Barbara Karnes (30:37):
end of life doulas are outside of the
medical system.
There are a variety of.
schools, courses that you can gothrough to learn end of life and
(30:57):
there, it is not a medicalcomponent.
It is a communal supportivecomponent.
You can hire, A man or a woman,who has gone through a training
program.
(31:18):
Now, when I say trainingprograms, I will say that there
are many, many, many courses andtraining programs.
So you want to research, justdon't Google and take the first
one that comes up.
You want to research to see thatit.
(31:38):
Thinks the way you think andoffers you what you want to do
in relationship to end of life.
And then, uh, the key thing is,end of life doulas are not
regulated.
There's no Course or test thatyou have to take, um, you could
(32:04):
call yourself an end of lifedoula, I suppose, and hang out a
shingle and have nothing.
Um, but those you research, justlike you're buying your car, you
research end of life doulas, youwant a, a reputable and Then, if
(32:29):
your heart says, you know, Iwant to work and end of life, I
want to help and support people,then an end of life doula, you
don't have the constraints ofsix months.
You can, and there's dementiadoulas also remind me to talk
about that, but, you can.
(32:51):
From the moment of diagnosis,you can have an end of life
doula who becomes your bestfriend for the family, for the
patient, who will guide andsupport you and has more
knowledge than your neighbor,has in supporting you.
And They haven't worked out feesyet, some have, some haven't.
(33:18):
so it's new, it reminds me ofwhen I started in hospice.
in what, 1980?
Um, because we weren't, we wereseated the pants, here's what I
think I ought to do.
And.
That's kind of where end of lifedoulas are, and I identify as an
(33:40):
end of life doula because thatwas the end of life care that I
gave.
And over the years, hospice hasbecome more and more
medicalized, and more of abusiness.
And in my mind, that's affectedsome of the quality hospice
care.
John (34:00):
now talking about the quality of hospice care, I
totally agree with everythingyou're saying, but there's no do
overs when it comes to hospicecare, and so once a team signs
the agreement to utilize acertain company, are they forced
to carry through that agreementall the way to end of life, or
if they're unhappy with the typeof treatment that's being
(34:22):
provided to their loved one, canthey Fire that hospice and
utilize a different company.
Barbara Karnes (34:29):
Absolutely.
What I recommend is if you'reunhappy, you first, you tell
your primary hospice nurse, I'munhappy.
Here's what I don't like.
And here's what I want.
And if that goes nowhere, and itdoesn't change anything, you go
to the primary clinical directorand you say, I've talked to the
(34:51):
nurse.
I'm unhappy.
Here's what I want.
Here's what I'm not getting thatdoesn't work.
Then go to the director of thehospice, the CEO of the hospice
and say, I've done these steps.
Nothing's happening.
And that's where you say, if youcan't fix this, I'm going
(35:12):
someplace else.
Erin (35:14):
Yes.
Barbara Karnes (35:15):
then you, um, Find your new hospice, call
several, interview, say, I'm inthe hospice program, at such and
such, and I'm unhappy, and whatcan you do for me?
Here's my needs, what can you dofor me?
And if you find a hospice thatmeets your needs, and I hope you
(35:37):
do, then you say to thathospice, I'm going to switch,
how do I do it?
And they will help you.
Switch.
John (35:47):
But don't fire the hospice company without finding another
one beforehand because you don'twant to, you know, a space of no
support that could, that couldcreate a lot of stress.
Erin (35:59):
You told us to bring up, I believe you said train earlier
and also dementia doula.
Barbara Karnes (36:05):
Dementia doula.
This is new.
That's beginning out there.
And Dementia doulas are men orwomen that are being trained not
only in end of life, but indementia.
(36:26):
And they don't have the sixmonth prognosis.
Dementia doesn't play by therules.
I mean, you can be at death'sdoor for years, if you have
dementia.
So, the Dementia Doulas supportthe patient and the family and
help everyone live in the momentbecause that's the key to Living
(36:51):
with and supporting someone whohas dementia.
The only thing that reallymatters in dementia is any given
moment.
And those doulas can support andguide the family.
It's a long haul.
the disease doesn't play by therules.
(37:12):
And at this point in time, wedon't have a lot of support for
the caregiver.
that's why I am really excitedabout this new, dementia doula.
John (37:27):
Yeah.
Well, I haven't heard of that.
We definitely want to researchthat and find more information.
Barbara Karnes (37:33):
All right, Oh, Teepa Snow has a website.
She's, a pioneer in dementia andthat would be a good place to do
a little research.
Erin (37:44):
Now I know, um, my father passed away almost three years
ago and I used to own acaregiving company and I've seen
it from other perspectives andbeen by the bedside, but to do
my own was different.
So it was.
It's interesting to experiencethat, but the steps of, that a
family should recognize, likehow do you know somebody is
going through death?
What are some of the tell signsof, oh, this is starting?
Barbara Karnes (38:08):
Okay, two, I'm going to start at the very
beginning.
There's only two ways to die.
You either die fast, heartattack, hit by a truck, suicide,
you're alive one minute and deadthe next, or gradual death.
And gradual death is either oldage or disease.
(38:30):
Gradual death has a process toit.
Two, three, four months beforedeath from disease, three things
start happening.
Eating habits change, sleepinghabits change, socialization
habits change, and it's all on acontinuum.
(38:51):
So, months before death, aperson gradually stops eating.
Starts with meat, and, oh, thatjust tastes awful, I can't eat
this meat.
Then pretty soon, on thiscontinuum, it's fruits and
vegetables.
Then it's soft foods.
Then you're doing good to get aprotein supplement down.
(39:14):
Ice cream, ice cream goes a longway, but you can get ice cream
almost to the end.
And then in the, I would saydays before death, you're
probably not getting anythingdown them.
In the weeks before death,you're doing good to get water
in them.
mean.
Food is the gas we put in ourcar to make it run.
(39:37):
And so it's perfectly normal andnatural that we will gradually
stop eating.
We start withdrawingsocialization wise from the
world, not interested in thefavorite football team.
And then pretty soon it's, ah,don't have the neighbor ladies
come over.
And then it's, ah, don't havethe grandkids come over.
(40:01):
And the person graduallywithdraws into themselves.
And the third thing is sleep.
Months before death, afternoonnap.
Pretty soon it's a morning andan afternoon nap.
And one day they don't get outof bed.
And then they're asleep morethan they're awake.
(40:21):
Those are the things you lookfor that say, Months before
death, then there are changesthat occur one to three weeks
before death, which I calllabor, and we go through labor
to get into this world, and wego through labor to leave it,
and there's a lot ofsimilarities, and we can relate
(40:44):
and understand thosesimilarities.
One to three weeks, a person tostart sleeping with their eyes
partially open.
They've got random handmovements.
You just agitate it, can't getthem settled.
they're picking at theirclothes.
Sometimes they're, they'll talkto you very, very clear, other
(41:08):
times not so much.
Those are kind of the key laborsbegun.
And then for the delivery, whichis days to hours, the person is
generally non responsive.
They start breathing like alittle fish breathes when you
(41:28):
take it out of water, that open,closed.
Their breathing gets slower andslower.
Their hands and feet getpurpley.
Their body's cold.
Um, their eyes are still at halfmask.
And their breathing gets slower.
And slower until they're notbreathing.
(41:50):
Now I'm going to tell you onething that most, I get letters
with a lot and so people need tounderstand.
I equate the delivery as Likebirth, you know, some women can
sneeze and out pops the baby andother women, 36 hours later,
(42:14):
they're still trying to pushthis little guy out.
Some of us can get out of ourbody easier than others.
And that final push to get outof this body isn't always
pretty.
You know, there's.
stuff running out of theirmouth.
(42:34):
There's body awkward movementsand gasps and facial expressions
that you go, Oh, what is this?
You know, sometimes their sound,just like pushing that baby out
isn't necessarily pretty.
So it is to get out of thisbody.
(42:55):
that's dying.
John (42:57):
Yeah.
Wow.
And that's, you know, I wasthinking as you're talking about
that, I was thinking about someof the hospice experiences I've
been through with the wordterminal agitation, right?
Where, where, um, There's such amisunderstanding, and if you
don't have a really greatsupport system, meaning a
wonderful nurse that can walkpeople through and help them
(43:18):
through that process, it canbecome very, very traumatic for
the loved ones that are going,what's, what's happening?
So thank you for explainingthat.
Barbara Karnes (43:28):
Well, and that's why I have written Gone From My
Sight, which explains, um, thedying process, starting months
before death and right up to themoment.
Because we don't have any rolemodels.
You can look at this little 14page, large print, 5th grade
(43:50):
level booklet and go, oh, yeah.
Mom's doing this.
Oh, it must not be pathologicalbecause it's here in the book.
And then the companion is,here's what you can do while mom
is leaving her body.
So one is, here's what'shappening.
(44:10):
The other one is, here's whatyou do while it's happening.
Erin (44:14):
Will you say the name of the book again and its nickname?
Barbara Karnes (44:17):
Ah, gone from my sight, and it's called The
Little Blue Book, or The LittleHospice Blue
John (44:24):
Yeah, every hospice company should have boxes of
them in their company that theygive to the patient.
Um, when they come on service,it should be something that's
bedside that that helps themthrough that process.
And so, yeah, I know that I'mgoing to tell any hospice
company I communicate with, youknow.
You need to connect with Barbaraand you need to get at some of
(44:46):
her copies of books because Ithink it'd be so helpful.
It'd be so incredible to havethat.
Erin (44:51):
But what's neat too is if you get a chance to go to her
website and it'll be linked tothe bottom of the blog for this,
um, you also have a bunch ofother books too, right?
There's a bunch of other, if youwant to share that cause it's
just fascinating.
Barbara Karnes (45:06):
Well, what I've done is, whenever I've seen a
need, then I've addressed it.
I saw a need that families needto understand the normal dying
process.
That was gone from my sight.
Families need to know what to doduring that time.
(45:28):
That's the 11th hour.
But I also wrote a book ondementia.
because dementia doesn't play bythe rules.
I wrote a booklet on painmanagement, because pain
management at end of life isdifferent than pain management
for people who are going to getbetter.
(45:49):
And I also wrote a booklet ongrieving.
A lot of people use it as asympathy card, write your
condolences on the inside cover,and it just touches on the
normal grieving process.
So that you can look at it andgo, Oh, I'm not crazy after all.
(46:11):
It's right here in the book.
All my materials, fifth gradelevel, short, large print,
short, simple, direct, butgentle.
Erin (46:21):
Well, and I think that's been one of our big missions is
really to get people to beproactive instead of reactive.
So I say now, if you have agingparents, if you're older, it
can't hurt you to start readingand researching and know what's
in your future, your possiblefuture that that's just my
opinion.
John (46:41):
And educating, educating children and stuff too, because
a big part of the dying processis the grandchildren are saying
goodbye to grandma or grandpa.
And if you have copies of yourbooks to help them understand
the process, it's not as scaryor traumatic for them.
Right.
And so, um.
I think what you're doing isamazing.
(47:02):
I'm I'm excited to get a copy ofthese books
Erin (47:05):
well, I wish I had the grief one because when my dad
died, I'm the oldest of seven.
My mom was of course grievingand then each of us children
were grieving in our own ways.
And, and as having a partner whohasn't gone through it, trying
to understand our grievingprocess, I feel like if we'd had
those books and had read thembefore, it It would have been
(47:25):
easier for everybody to kind ofcommunicate and go.
Oh, you're mad right now, andand it's okay It's not me.
It's just that's your grievingright now, and you know those
different processes
Barbara Karnes (47:36):
Yep, knowledge reduces fear and fear is a huge
part of our life when you'redealing with end of life.
We don't have any role models.
Grandma used to live at home,and she died at home, and the
(47:57):
family was there, and weunderstood this is a normal,
natural process.
But over the years, Grandmamoved from being at home dying
into the hospital dying.
And there she died at the end ofthe hall, with no one there.
And then we went from grandmadying in the hospital to grandma
(48:21):
dying in a nursing facility.
And again, often the family isnot there.
Uh, and when the family isthere, they don't understand.
They think somethingpathological is happening.
We're coming full circle.
We're now coming back to Grandmaat home.
(48:43):
With end of life doulas, withhospice.
We're back with Grandma in herbed, with the cat on the end of
the bed, and the grandkids.
there and their support.
So we're learning again howpeople die naturally and my hope
is that that in itself willreduce a lot of the fear that we
(49:11):
bring.
The more that have thisconnection with end of life,
then the more we can help othersand provide comfort and
direction and support andcompassion.
John (49:30):
Another question I was curious about from my dad and I
always thought If they're up inthe middle of the night and they
wanted to go outside or theycouldn't sleep, some people are
like, no, you have to stay inbed.
Don't come out.
Stay here.
Whereas I doubt if you want towalk outside at three or four
o'clock in the morning, let's gofor a walk somewhere.
And I wanted to get your takethe pros or cons of what to not
(49:53):
to, should someone do?
Barbara Karnes (49:58):
I think as caregivers, and that's family, a
big wide range there of who I'mtalking about.
Our goal, I would like it to beTo make each moment of our
(50:20):
special person's day, life,until they don't have it
anymore, every day special.
Bring joy, bring love every day.
It's, you know, most of us liveeither in the past, which is a
(50:41):
memory, or in the future, whichis a possibility.
Very few of us live in themoment, which is the only real,
real thing.
So if we can.
(51:02):
support and love our person inthe moment.
I think that's the gift we cangive our special person.
Erin (51:15):
Well, I'm like, I've been trying not to cry this whole
John (51:18):
episode.
I'm like, I'm like, it's coming.
And then she gets emotional andI wind up getting emotional.
It's like same thing.
She eats something.
I wind up eating something.
It's like, I don't know.
How we're attached here,
Erin (51:30):
but almost like we're
John (51:32):
so so I'm going to, I'm going to ask a quick question
that cause I know she has aquestion at the end of this,
that she wants to share that sheasked everybody.
And I love her question as well.
But mine is, is how do you keepthe passion going?
Right?
So there's so many people thatget in different minds of work
and you've been in this.
And this for decades, you'vebeen doing this for many, many
(51:53):
years, giving to so many people,enriching so many people's lives
and sharing your passion for,for what you do through
education, through your books,your experiences, which I feel
is just phenomenal.
And there's so many people thatget into career fields, you
know, and they, they stopbecause they're bored or they're
agitated or not enough money.
(52:14):
What keeps you excited abouthospice and your passion for
writing these books andsupporting people?
Barbara Karnes (52:22):
Well, is it going to sound funny if I say I
think that's what I'm on thisplanet for?
I, I think that that's, that'smy work is to educate, about end
of life.
Uh, I look back at my life andeverything seemed to fall into
(52:43):
place without me doing anything.
And so it's kind of like, yeah,this is my purpose.
This is what I'm here for.
I take care of myself.
I watch movies.
I laugh.
I recognize, that I must takecare of myself as anyone who
(53:05):
works in end of life.
Anyone who works in anythingneeds to take care of
themselves.
That's really important.
And that life is special.
Uh, life is, can be beautiful.
You know, I will say, this willexplain me.
(53:25):
Every night, after I turn mylight out, I ask myself, what
did I trade a day of my lifefor?
What did I do that brought mejoy?
That fulfilled me?
Those are the things that Ithink we're on this planet for.
(53:46):
Or at least I'm on this planetfor.
And that kind of keeps me ontrack.
John (53:51):
Wow.
You know, knowing your purpose.
There's so many, so many peoplein this world that don't, right.
And they're always questioning,why am I here?
What am I, what is my objective?
But it's so beautiful that youfound that and, and you're
living it because I know there'sgoing to be a lot of listeners
that listen to this and getexcited about it.
But it's so true.
(54:12):
It's knowing your purpose,feeling your purpose.
It's no longer hard work.
It's no longer like a job.
Like a lot of people have,right?
It's, it's passionate.
It's exciting.
It's fulfilling.
So yeah, thank you for that.
Oh,
Erin (54:30):
I feel like we might have missed something, not miss
something.
If we've covered it off, there'ssomething you feel like, Oh, I,
I really want to share this.
Let us know if there's
John (54:40):
something.
Barbara Karnes (54:41):
always do another one.
Erin (54:43):
Oh, that's awesome.
We'll just come up there andvisit you next time.
Yeah.
So my favorite thing to know,I'm an avid traveler.
I love travel and culture andmeeting people and John, it
feels the same way.
And so we'd like to ask what ison your bucket list?
Where would you love to go andexplore or where have you been
(55:04):
that you love and would like toshare?
Barbara Karnes (55:06):
My husband and I have been avid travelers.
And we've been almosteverywhere.
You name it, we've probably beenthere.
And great memories, greatexperience, to, uh, get a
(55:27):
broader picture of people andhow they live, and how they
think.
travel broadens our world andour perception and we loved it.
We loved it.
someone was asking me justrecently, where do you want to
go?
(55:47):
I've been almost every placethat I can think of.
Erin (55:52):
Did you have a favorite?
Barbara Karnes (55:54):
Oh, Thailand, love Thailand, Iceland, as we
talked about, Iceland is, isgreat, Germany,
Erin (56:06):
you sound like you sound like me When john always asked
my favorite thing.
I'm like, I can't pick
Barbara Karnes (56:13):
I know,
John (56:14):
Whether it's food or travel, she's like, don't ask me
that.
Barbara Karnes (56:19):
because each place is unique and different
and there's beauty.
In every place, you just have tolook for it, and, reach out for
it, and it's there.
Um, what's the saying?
Beauty is in the eyes of thebeholder.
That's true.
Erin (56:38):
Yeah.
John (56:39):
Yeah.
that's great.
Well, I just want to thank youpersonally.
It's been such an incredibleexperience of being able to
connect with you and.
We feel so honored that you'reon our podcast today and we're
really trying to create, well, Ishouldn't say we're trying to
create.
She always gets mad when I saythat we are creating a movement,
(57:00):
a movement of awareness and it,it, it comes from people that
have an incredible story toshare and a ton of experience
and in certain fields as, as weget older.
And so thank you.
Thank you for everything you'veshared.
Thank you.
Erin (57:18):
I'm just grateful I made it without crying through the
whole thing.
Yeah, that would
John (57:23):
Yeah.
That would have been a little
Erin (57:24):
little awkward,
John (57:25):
in tears as we're talking to you.
Erin (57:27):
tears as we're talking.
Excuse
Barbara Karnes (57:30):
Well, thank you for inviting me.
I think we've had a reallyinteresting, helpful
conversation.
Conversation and when I sayhelpful to all those that are
going to hear this, I think thethree of us have done a good
Erin (57:47):
Oh, no, thank you.
I appreciate it.
John (57:52):
Thank you for tuning in to another episode of Connect
Empower.
We want to express our gratitudeto you for being part of our
community, and we hope today'sepisode has provided you with
valuable insights andinspiration to enhance your life
and that of a loved one.
Erin (58:07):
We are more than just a podcast.
We are a community dedicated toenhancing the lives of our aging
adults and their support system.
We encourage you to visit ourwebsite now at www.
connect empower.
com.
Explore more information aboutour guests from today's episode
and to access our freeresources.
John (58:28):
resources.
Our mission doesn't end at theconclusion of this episode.
We invite you to take action nowby sharing the knowledge you've
gained today with someone whomay benefit from it.
Whether it's a family member,friend, or colleague, your
influence can spark positivechange.
Erin (58:43):
Remember, Subscribing to our podcast ensures you never
miss an episode and we have moreincredible guests and resources
in store for you.
So hit that subscribe button andstay connected with us.
Your commitment is the drivingforce behind our mission and
together we can create amovement for a brighter future
as we age.
John (59:03):
I'm John.
Erin (59:04):
I'm Erin.
Until next Wednesday.
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