February 11, 2025 • 25 mins
A tough topic but one we all need to know about sooner than later.
Welcome Vangie Jones, a hospice nurse for 20 years as she shares with us all we need to know about hospice including the myth that it is only for the final days or weeks. This will be a three part recording since we had so many questions for Vangie that we all want to know
A shout out to all our supporters including Tom Lawson, Dee C, Sue, Jane Wakeman,Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
We are doing this for all of us and we thank you from the bottom of our hearts.
Should you wish to bless us with your support you can use links below.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Hello and welcome to our podcast about living on the
Lewy Body Roller Coaster apodcast for Lewy Body Dementia
patients and their families.
Presented by Lewy Body patientsand their families.
Speaker 2 (00:13):
You will hear firsthand the ups and downs and
twists and turns of Lewy BodyDementia From families directly
affected.
We'll share our support andexperiences on all things Lewy
Body.
Speaker 1 (00:25):
We're your hosts, Linda and Curry.
I have a loved one with LewyBody Dementia.
Speaker 2 (00:30):
And I am living with Lewy Body Dementia.
Speaker 1 (00:33):
Let's get started.
Speaker 3 (00:41):
All right, let's continue our talk with Vanjie
and ask some more questionsabout hospice.
So, curry, you want to ask thenext one, you bet?
Speaker 2 (00:49):
Vanjie, let's get into more of the services
hospice offers.
You kind of touched on italready last week, but can you
share with us the servicesoffered to the patient and are
there any services for thecaregivers as well?
Speaker 4 (01:06):
Yes, so hospice, like I said before, is a
multidisciplinary team approach.
That means every patient hastheir own team and that's going
to include the medical directorfor the hospice plus your doctor
if he chooses to stay active.
It's going to include RNs ornurses, home health nurse aides,
(01:31):
and that's someone that cancome in and help with bathing,
trimming nails.
If it's a woman patient, youknow they're going to paint
their nails, they're going topamper them, but all those
things they're going to do thosethings.
They can also be responsible toclean the immediate area of
that client Okay, their bedroom,change the linens, change the
(01:55):
bed, those type of things.
Your volunteers, like I said,they can bring meals into the
clients and their families theycan come sit with.
The only thing they don't do isthey can't hand, deliver
medications to a patient, butthey can open a med box and say,
or hand them a bowl that theirspouse has put in for them.
(02:19):
They're there so that thecaregiver can get an outing, can
get what you know, maybe shewants to go to church, maybe she
wants to go to the beauty shop,maybe he needs to go to the
barber shop, you know.
And so that volunteer, like Isaid, they bring meals in,
whatever's needed, and that youwork out between you and the
(02:40):
volunteer yourself once they'reassigned.
And that's why.
And then there's a social worker.
Now everybody on your team isrequired by law, by federal law,
under Medicare criteria, to bein the home and have met the
client and the caregiver withinone week.
(03:02):
Okay, now, that's a lot ofpeople in a week.
So what they generally do isthey call and say you know, if
you're not overwhelmed, do youwant us to come?
The social worker, the chaplain, those people, do you want us
to come?
Maybe next week?
Speaker 3 (03:21):
But by law, everybody needs to be in your home within
a week, a week from when wecall and ask for an evaluation.
Speaker 4 (03:29):
A week from the time that the nurse comes, assesses
and you sign papers to go intothe hospital.
That plan of care is writtenwithin that 24 hours.
The team is notified and you'regoing to start getting calls.
And so the team also involves apharmacist.
The pharmacist has to beactively involved.
(03:50):
Weekly or every two weeks, theyhave a meet with a
multidisciplinary.
The whole team comes togetherin regards to just that
patient's care and thepharmacist is there and he looks
at drug interactions, he looksat dosage, he looks at those
type of things.
Um, and so the pharmacist meetsthe doctor, meets the social
(04:14):
worker meets the nurse, meets.
They look at that.
Um, so for the, for the client,all those services, okay, are
being provided for the caregiver.
You're going to have a socialworker.
They're going to help withfinances.
They're going to help look withdo we need to get more services
(04:34):
in the home and how can we dothat in a community?
Help them.
They're going to have lots andlots of counseling for that
caregiver.
Okay, that's someone that's notjust going to visit on a
regular basis and they usuallyvisit that setup between the
caregiver and the social workerbut they're going to also call
(04:57):
on a regular basis and you'regoing to have their number to
call when you need them.
Okay, to talk when you needthat support.
Speaker 3 (05:07):
Can I ask a the social worker?
There would be one assignedlike to my husband and a
separate one assigned to me asthe caregiver okay, no, it's
generally the same okay becauseit's, um, because of that team
approach as we look at it.
Speaker 4 (05:19):
So it's generally going to be the same, but
generally, um, by the timeexcuse me, by the time that the
patient, uh, is in hospice,they're maybe not going to be
has, uh, that they're going tobe as cognitively involved maybe
, and so they might not want tosee the social worker as much,
(05:43):
but that social worker is there.
They're there to help makeadvanced directives, help with
funeral, help get that set up.
If there's not financesavailable, help find those
finances for funerals in thecommunity.
It's endless what your socialworker can do for you, um, and
(06:04):
so that's your team and that'spretty much.
They're also gonna um inregards to like equipment they
provide.
They also provide personal careof things like, um depends um,
maybe, uh, lotions for skins,heel, heel, bows, elbow pads.
(06:27):
They're going to provide achucks.
They're going to provide mouthswabs.
They're going to provide allthose things, and they're going
to teach that caregiver how touse all those things, how to
turn their family member with it.
It's there to make life betterfor everyone.
We want that end ofof-lifeexperience to have quality and
(06:51):
to be loving and compassionate.
Speaker 3 (06:56):
Yeah, and what you're saying is what Bonnie was
explaining to us is because shewaited so long, which I totally
understand.
She waited so long, which Itotally understand.
You know, we always we thinkwe're super women and super
caregivers.
That it was.
She got all of it all at onceand she said it was very
overwhelming, like four hoursyeah four hours of this and this
(07:18):
, and she said people coming andgoing, and so that, and right,
there is another reason to getit started, so that you're not
trying to get the services whenyou're already overwhelmed
overwhelmed.
Speaker 4 (07:32):
Yes and saddened yes, both.
And the other thing that theyprovide is what's called
bereavement services.
Okay, and you want to know thatthey have a bereavement service
and that means that generallywhat it means is they're going
to follow you for 13 monthsfollowing your loved one's death
.
They're going to write, they'regoing to call, they're going to
(07:53):
visit.
Some agencies provide memorialservices, like the one I worked
for with 20 years.
Every year we had a memorialservice at one of the local
churches.
Family members, the entirefamily, even if they weren't
directly involved, are invited.
They can read poems, they canread scripture, they can tell
stories about their loved oneand it's a memorial service for
(08:17):
them to then be able to touchbase with their hospice team
again, but to just bring acelebration of life in regards
to that patient.
And often that bereavementservice will also have certain
things for children.
If there's children in the homestill maybe they provide.
(08:39):
Ours provided a camp every yearthat was free.
It was a three-day camp forchildren who had lost their
parents or maybe grandparents,it doesn't matter and
health-free for them.
So we want that bereavementservice because even though that
patient's gone, there's a bigvoid in that life, you know
(09:01):
still.
Speaker 3 (09:02):
Yeah, and I know sorry.
Someone asked us to ask, whichI'm pretty sure you already
touched on and just from havingBonnie on, someone asked can we
keep our loved ones at home andwho determines that home?
But is, will there ever be apoint where, like you explained
(09:27):
with curry's question, um, wherehospice will say listen, you
know we can't control the painand we can't, you know, we can't
, control the agitation.
We need to, you know, send themor send them somewhere, or is
it up to the loved one to say no, they're staying here that's
right.
Speaker 4 (09:46):
It's a if, his, if the patient's goal was to die in
their home, surrounded by theirloved ones, with their loved
ones following their wishes,then that's that's.
They're going to keep them athome.
But if it's something that, um,and if they're not that close
to and if they're not that closeto death, okay, if they're not
(10:08):
that close to death and we'vegot a serious problem we need to
address maybe it's agitationand pain they're going to maybe
offer hey, let's put them in,we'll get them back home.
You can go to the hospital too,or you can take this time to
rest.
We're paying for it and we'regoing to get them back home.
We're going to get this symptomunder control.
We're going to back homebecause that's where they want
(10:30):
to be.
Now, on the other hand, thereare some patients that do not
want to die at home.
Okay, and so if that hospicehas an inpatient unit or a
contract with a hospital so thatthat client can go in, then
that's an option.
Oftentimes, a hospice will say,now, they're not supposed to
(10:57):
say this, okay, well, I'm justgoing to say it anyway.
They're not supposed to say it.
They're not supposed to saythat.
They're not supposed to saythat They'll say, well, then you
need to sign out of hospice.
No, you, getting out of hospiceshould be your choice and you
can do that at any time and youcould go back into a hospice.
(11:19):
So let me give you an example.
Let's say the patient fell andbroke their hip and you wanted
to get him in and get himsurgery.
So then that's the time to signout of hospice get in, get your
care, come on home, go backinto hospice.
However, you don't have to signout of hospice because your
(11:42):
medicare if you're under forlouis bodies, your medicare is
going to pay for a broken hip,like you didn't even have
hospice.
Okay.
So, but a patient can get outof hospice anytime he chooses
and they can go back in at anytime they choose.
The same thing they can changecompanies one time in a
(12:03):
certification period.
So what is a certificationperiod?
That's that 90 days, that sixmonths?
Okay, 30, 60, isn't that sixmonths?
Yeah?
And so in that certificationperiod, you can change a company
one time under Better?
Speaker 3 (12:24):
90 days is three months.
Speaker 4 (12:26):
Okay, well then go back 180 days, that's right.
I'm sorry I'm a mistake, but inthat six month period you can
change companies one time.
So if you didn't like yourcompany, the same thing.
Let's say you were in NewJersey, right.
And let's say you would havehad hospice and you decided to
(12:48):
move to Louisiana to be closerto family you could have had
your hospice transferred.
Your hospice up there wouldhave transferred you to a
company down there.
Speaker 3 (13:01):
That's good to know.
Speaker 4 (13:02):
Yes, and the other thing is to remember when you're
in hospice, you are not homebound.
The goal is generally what Iwould always ask my clients when
I went in to assess them iswhat is your long-term goal?
What is your long-term goal?
And now tell me what yourshort-term goal is.
If one of their goals theywanted to achieve was to go on a
(13:25):
cruise, we have sent them on acruise with emergency meds and
phone numbers, and we connectedthem through hospices all along
the way, because it's about life, living it until it's no longer
that option, and so you're notstuck, you can go, you can do,
(13:46):
and that hospice should be ableto help you do that.
Speaker 2 (13:50):
Wow, all right, kari, yeah, someone asked and I guess
this is a good question.
Should I include hospice carein my advanced care planning?
Speaker 4 (14:04):
Yes, okay, planning, yes, okay.
Now let me um when we'retalking about advanced care
planning, because there's adifference in advanced care
planning and advanced directive.
The advanced directive is whatyou fill out after you sit down
and talk about your advancedcare planning, but you need to
let whoever's working with youto help you with your advanced
(14:24):
care planning to know I choosenot to be on life support, I
choose not to be resuscitated, Ichoose not to have
life-sustaining interventions, Ichoose not to be given.
Some people choose not to haveantibiotics, some people choose
you know what I'm saying.
So, if so, when that comes, Ichoose to have a hospice to
(14:51):
provide my care in my home.
Okay, so then you've written itout so that everybody will
follow your wishes.
So I think it should be part ofit.
A advanced care planningmeeting, it needs to be
discussed, and I think that thenyou need to make sure you have
(15:12):
an advanced directive.
I guess some states call it aliving will still, but it's an
advanced directive that saysthis is what I want and, in my
inability to make that decision,this is the person I have
designated to make that decisionand to follow my wishes yeah,
(15:32):
so, um, someone asked us to askwhat type of medications.
Speaker 3 (15:36):
Well there's, I'm throwing an extra one in there.
Do they have to stopmedications when on hospice, and
and or what type of medicationscan are the ones be on while on
hospice?
Can they be on psychiatric medslike ericep, sleep meds, and
can they still see theneurologist, or do they have to
change to all hospice doctors?
Speaker 4 (15:56):
That's a misconception too.
Hospice does not make you stopyour medicine.
If you go under with Lewy Bodyand the medicines you're on are
still providing you quality oflife, they're still working.
You're swallowing them.
They're paid for Hospice thatgoes under their hospice
(16:17):
criteria, so it's paid for.
You don't need to Now.
The nurses will tell you whenit's probably time to maybe look
at changing things.
You know, maybe we need to gooff this we're.
You know, let's get rid of someof these meds because they're
not having as much um, notswallowing as easily.
So we need to look at doingsome things different.
(16:39):
You do not lose your doctor.
You can still keep your doctor.
Now, when you're talking abouturologists, is that your primary
doctor for your Lewy body?
And if it is, then he canchoose to stay and he can he'll.
What he'll do is when you go tosee him, because I'm assuming
(17:01):
you want to continue to see him.
He's not going to come to thehouse, but if you continue to
see him, then that is, his billis billed with hospice.
Okay, he works that out withhospice, but you don't have to
get rid of your primaryphysician for your illness.
Speaker 3 (17:19):
Hmm, well, that's good.
Well, that's good to know and Iknow you've already answered
the next one about they don'tstay with you 24 seven, but
there's, you can contact someone.
Speaker 4 (17:31):
That's right.
Um, when end of life is ispretty imminent and we'll say
like the last couple weeks, thenthat nurse is probably going to
say it's time for us to comedaily.
Okay, you need the support andwe need to have hands on and
eyes on, and so you're going tosee them daily.
But if you call and say I wouldlike a visit, they're going to
(17:54):
always come.
That's their responsibility.
That's what they're going to do.
Now.
Sometimes, yes, that nurse isgoing to be right there when
that patient takes that finalbreath, because they came and
things went down fast or theyknew they were going to go and
they're going to stay.
They're going to try to stay.
They were going to go andthey're going to stay, they're
(18:15):
going to try to stay.
You know, I've never I've neverpersonally experienced myself
or any nurses I've worked with,that said, well, he's going to
die in the next hour or so andcall us when it happens.
They just okay, so, but whatthey don't do is that last week
(18:37):
they're not going to beproviding you nurses around the
clock.
No, but by then you're going tobe so comfortable with doing
the care.
Hopefully you know if they'vebeen with the team for a while.
That's another reason don'thold referral off so long.
Speaker 3 (18:49):
Yeah, now I two things real quick curry before
you do yours.
What if?
What if the person say hadthree back surgeries and can't
like lift or move or do any ofthat and they're not capable of
doing what's needed?
Will hospice have somebody comeevery day?
Speaker 2 (19:07):
then, if that's the case, they might get you a lift.
Speaker 4 (19:10):
Maybe, I don't know they provide a, a Hoyer lift.
They provide equipment-wise thethings that are paid for by
equipment-wise Hospital bed, airmattress or pressure-reducing
mattress.
They will provide side rails,bedside commodes, wheelchairs,
(19:32):
walkers, oxygen.
You know, hoyer lift, all ofthose things can be provided by
that hospital at no charge tothe.
They do have a formulary that'sput out by the government.
So you know, there's somethings you're not going to get.
(19:53):
You're not going to get, you'renot going to get a ten thousand
dollar pressure bed no, dang it, I know I know but but they
have to, so they have to.
There's some things that theyhave to say no, I can't provide,
but those are generally thethings that all hospices, I
think in the united states,provide and, you know, hospice
around the world.
It's going to be different, butyeah, um, yeah, um.
(20:14):
And the last question, thisaround the world, it's going to
be different.
Speaker 3 (20:15):
But yeah, yeah, um, and the last question, this,
this one goes back because Isaid that people were still
sending me questions after Isent you what we were going to
talk about.
This one kind of took me bysurprise.
Um, somebody asked, when youask clarifying questions, if the
diagnosis qualifies.
Her husband was dischargedbecause he was gaining weight.
Just because he was gainingweight.
Speaker 4 (20:39):
Okay.
Well, now I want to remind youall that I'm not diagnosing
either.
Okay, I can't cure you, treatyou or any of those things I'm
going to talk to you from myexperience, things I'm going to
(20:59):
talk to you from my experience.
They could not and should nothave discharged before that
six-month period.
Okay, at the end of thatsix-month period, yes, that
patient has to be recertified.
So that means they have to havethat same assessment Now.
They have to have that sameassessment Now.
Myself, when I had any patientthat had Alzheimer's, dementia,
(21:19):
lewy bodies, I knew that therewere some things that could keep
that patient in, even if we hadsome weight gain.
Because, guys, maybe when wesigned them up they'd lost
weight because they'd been sick.
So they're going to naturallygain weight when you improve the
quality of their life.
So what we do is we measurecircumferences arms, legs, chest
(21:57):
we look at daily intake, welook at how much fluids they can
take.
Are they having some silentaspiration?
How many falls have they hadrecently?
And so what gets that patientrecertified is painting a really
good picture of what's trulygoing on with that patient, with
that patient.
So now, if the patient Reallydid, if they gained 20 pounds
(22:19):
and it wasn't fluid and they,their vocabulary, increased.
They were holding their head up.
You know they weren't startingto hump over Because you know,
and I, sometimes they startlosing that ability To hold your
neck up or your.
If those things are all of asudden improving, maybe they are
(22:43):
going to be e-certified.
Does that mean they can't comeback to hospice?
Nope, they can come backanytime they want.
Speaker 3 (22:50):
So is it every six months?
They get evaluated,re-evaluated, no matter what.
Speaker 4 (22:54):
Yes, yes, every six months get evaluated,
re-evaluated, no matter what.
Speaker 3 (22:58):
Yes, they okay.
Yes, every six months, okay,okay, so but that's called a
certification period but I'mglad I asked that question
because now that the girl who umasked that question will know
to have them doing thatmeasuring of body parts to you
bet Measure, you know, becausejust because someone has gained
(23:19):
some weight does not mean theydidn't lose muscle mass.
I was just going to say thatbecause my husband's gone from
220 down to 180, but he snacksall the time and I don't have
the heart now to tell him not tosnack.
I'm like you eat what you want,so he's got a little belly, but
I'm telling you he snacks allthe time and I don't have the
heart now to tell him not tosnack.
I'm like you eat what you want.
Speaker 4 (23:36):
So he's got a little belly, but I'm telling you he
has no muscle, like he can'teven lift that way he lost was
his muscle mass and that'sthat's what moves them to
frailty and any patient thatmoves over the line of frail.
Frailty means that generallyyou have a couple incidents in a
disease process that declinesthem.
(24:00):
But once they hit a frailty,there's been so many studies
done, and they did some studiesin nursing homes and they found
that women who get a secondurinary tract infection in a
nursing home generally crossover the frailty line and they
will always be gone in sixmonths.
Same thing with fractured hips.
(24:22):
And so you have to look, youhave to do those circumference
meds, you have to look at.
Okay, so they're eating, but isit because the spouse is
feeding them?
Can they no longer feedthemselves?
You know, you got to paint thepicture and a good nurse will
paint the picture.
Speaker 3 (24:43):
We're going to keep asking Vandy some more questions
, especially asking her aboutthe biggest challenges and
misconceptions about hospice.
So we knew this was going to beat least a two-parter.
It's going to be a three-parter.
Sorry, no, we knew it, curry,and I knew it because, vandy, we
(25:05):
try to keep them around 30, 35minutes, so it's perfectly fine
that it's long because this issuch an important topic.
So stay tuned everyone.
We'll be back with part threein a minute.
Hello and welcome to our podcast about living on the
Lewy Body Roller Coaster apodcast for Lewy Body Dementia
patients and their families.
Presented by Lewy Body patientsand their families.
Speaker 2 (00:13):
You will hear firsthand the ups and downs and
twists and turns of Lewy BodyDementia From families directly
affected.
We'll share our support andexperiences on all things Lewy
Body.
Speaker 1 (00:25):
We're your hosts, Linda and Curry.
I have a loved one with LewyBody Dementia.
Speaker 2 (00:30):
And I am living with Lewy Body Dementia.
Speaker 1 (00:33):
Let's get started.
Speaker 3 (00:41):
All right, let's continue our talk with Vanjie
and ask some more questionsabout hospice.
So, curry, you want to ask thenext one, you bet?
Speaker 2 (00:49):
Vanjie, let's get into more of the services
hospice offers.
You kind of touched on italready last week, but can you
share with us the servicesoffered to the patient and are
there any services for thecaregivers as well?
Speaker 4 (01:06):
Yes, so hospice, like I said before, is a
multidisciplinary team approach.
That means every patient hastheir own team and that's going
to include the medical directorfor the hospice plus your doctor
if he chooses to stay active.
It's going to include RNs ornurses, home health nurse aides,
(01:31):
and that's someone that cancome in and help with bathing,
trimming nails.
If it's a woman patient, youknow they're going to paint
their nails, they're going topamper them, but all those
things they're going to do thosethings.
They can also be responsible toclean the immediate area of
that client Okay, their bedroom,change the linens, change the
(01:55):
bed, those type of things.
Your volunteers, like I said,they can bring meals into the
clients and their families theycan come sit with.
The only thing they don't do isthey can't hand, deliver
medications to a patient, butthey can open a med box and say,
or hand them a bowl that theirspouse has put in for them.
(02:19):
They're there so that thecaregiver can get an outing, can
get what you know, maybe shewants to go to church, maybe she
wants to go to the beauty shop,maybe he needs to go to the
barber shop, you know.
And so that volunteer, like Isaid, they bring meals in,
whatever's needed, and that youwork out between you and the
(02:40):
volunteer yourself once they'reassigned.
And that's why.
And then there's a social worker.
Now everybody on your team isrequired by law, by federal law,
under Medicare criteria, to bein the home and have met the
client and the caregiver withinone week.
(03:02):
Okay, now, that's a lot ofpeople in a week.
So what they generally do isthey call and say you know, if
you're not overwhelmed, do youwant us to come?
The social worker, the chaplain, those people, do you want us
to come?
Maybe next week?
Speaker 3 (03:21):
But by law, everybody needs to be in your home within
a week, a week from when wecall and ask for an evaluation.
Speaker 4 (03:29):
A week from the time that the nurse comes, assesses
and you sign papers to go intothe hospital.
That plan of care is writtenwithin that 24 hours.
The team is notified and you'regoing to start getting calls.
And so the team also involves apharmacist.
The pharmacist has to beactively involved.
(03:50):
Weekly or every two weeks, theyhave a meet with a
multidisciplinary.
The whole team comes togetherin regards to just that
patient's care and thepharmacist is there and he looks
at drug interactions, he looksat dosage, he looks at those
type of things.
Um, and so the pharmacist meetsthe doctor, meets the social
(04:14):
worker meets the nurse, meets.
They look at that.
Um, so for the, for the client,all those services, okay, are
being provided for the caregiver.
You're going to have a socialworker.
They're going to help withfinances.
They're going to help look withdo we need to get more services
(04:34):
in the home and how can we dothat in a community?
Help them.
They're going to have lots andlots of counseling for that
caregiver.
Okay, that's someone that's notjust going to visit on a
regular basis and they usuallyvisit that setup between the
caregiver and the social workerbut they're going to also call
(04:57):
on a regular basis and you'regoing to have their number to
call when you need them.
Okay, to talk when you needthat support.
Speaker 3 (05:07):
Can I ask a the social worker?
There would be one assignedlike to my husband and a
separate one assigned to me asthe caregiver okay, no, it's
generally the same okay becauseit's, um, because of that team
approach as we look at it.
Speaker 4 (05:19):
So it's generally going to be the same, but
generally, um, by the timeexcuse me, by the time that the
patient, uh, is in hospice,they're maybe not going to be
has, uh, that they're going tobe as cognitively involved maybe
, and so they might not want tosee the social worker as much,
(05:43):
but that social worker is there.
They're there to help makeadvanced directives, help with
funeral, help get that set up.
If there's not financesavailable, help find those
finances for funerals in thecommunity.
It's endless what your socialworker can do for you, um, and
(06:04):
so that's your team and that'spretty much.
They're also gonna um inregards to like equipment they
provide.
They also provide personal careof things like, um depends um,
maybe, uh, lotions for skins,heel, heel, bows, elbow pads.
(06:27):
They're going to provide achucks.
They're going to provide mouthswabs.
They're going to provide allthose things, and they're going
to teach that caregiver how touse all those things, how to
turn their family member with it.
It's there to make life betterfor everyone.
We want that end ofof-lifeexperience to have quality and
(06:51):
to be loving and compassionate.
Speaker 3 (06:56):
Yeah, and what you're saying is what Bonnie was
explaining to us is because shewaited so long, which I totally
understand.
She waited so long, which Itotally understand.
You know, we always we thinkwe're super women and super
caregivers.
That it was.
She got all of it all at onceand she said it was very
overwhelming, like four hoursyeah four hours of this and this
(07:18):
, and she said people coming andgoing, and so that, and right,
there is another reason to getit started, so that you're not
trying to get the services whenyou're already overwhelmed
overwhelmed.
Speaker 4 (07:32):
Yes and saddened yes, both.
And the other thing that theyprovide is what's called
bereavement services.
Okay, and you want to know thatthey have a bereavement service
and that means that generallywhat it means is they're going
to follow you for 13 monthsfollowing your loved one's death
.
They're going to write, they'regoing to call, they're going to
(07:53):
visit.
Some agencies provide memorialservices, like the one I worked
for with 20 years.
Every year we had a memorialservice at one of the local
churches.
Family members, the entirefamily, even if they weren't
directly involved, are invited.
They can read poems, they canread scripture, they can tell
stories about their loved oneand it's a memorial service for
(08:17):
them to then be able to touchbase with their hospice team
again, but to just bring acelebration of life in regards
to that patient.
And often that bereavementservice will also have certain
things for children.
If there's children in the homestill maybe they provide.
(08:39):
Ours provided a camp every yearthat was free.
It was a three-day camp forchildren who had lost their
parents or maybe grandparents,it doesn't matter and
health-free for them.
So we want that bereavementservice because even though that
patient's gone, there's a bigvoid in that life, you know
(09:01):
still.
Speaker 3 (09:02):
Yeah, and I know sorry.
Someone asked us to ask, whichI'm pretty sure you already
touched on and just from havingBonnie on, someone asked can we
keep our loved ones at home andwho determines that home?
But is, will there ever be apoint where, like you explained
(09:27):
with curry's question, um, wherehospice will say listen, you
know we can't control the painand we can't, you know, we can't
, control the agitation.
We need to, you know, send themor send them somewhere, or is
it up to the loved one to say no, they're staying here that's
right.
Speaker 4 (09:46):
It's a if, his, if the patient's goal was to die in
their home, surrounded by theirloved ones, with their loved
ones following their wishes,then that's that's.
They're going to keep them athome.
But if it's something that, um,and if they're not that close
to and if they're not that closeto death, okay, if they're not
(10:08):
that close to death and we'vegot a serious problem we need to
address maybe it's agitationand pain they're going to maybe
offer hey, let's put them in,we'll get them back home.
You can go to the hospital too,or you can take this time to
rest.
We're paying for it and we'regoing to get them back home.
We're going to get this symptomunder control.
We're going to back homebecause that's where they want
(10:30):
to be.
Now, on the other hand, thereare some patients that do not
want to die at home.
Okay, and so if that hospicehas an inpatient unit or a
contract with a hospital so thatthat client can go in, then
that's an option.
Oftentimes, a hospice will say,now, they're not supposed to
(10:57):
say this, okay, well, I'm justgoing to say it anyway.
They're not supposed to say it.
They're not supposed to saythat.
They're not supposed to saythat They'll say, well, then you
need to sign out of hospice.
No, you, getting out of hospiceshould be your choice and you
can do that at any time and youcould go back into a hospice.
(11:19):
So let me give you an example.
Let's say the patient fell andbroke their hip and you wanted
to get him in and get himsurgery.
So then that's the time to signout of hospice get in, get your
care, come on home, go backinto hospice.
However, you don't have to signout of hospice because your
(11:42):
medicare if you're under forlouis bodies, your medicare is
going to pay for a broken hip,like you didn't even have
hospice.
Okay.
So, but a patient can get outof hospice anytime he chooses
and they can go back in at anytime they choose.
The same thing they can changecompanies one time in a
(12:03):
certification period.
So what is a certificationperiod?
That's that 90 days, that sixmonths?
Okay, 30, 60, isn't that sixmonths?
Yeah?
And so in that certificationperiod, you can change a company
one time under Better?
Speaker 3 (12:24):
90 days is three months.
Speaker 4 (12:26):
Okay, well then go back 180 days, that's right.
I'm sorry I'm a mistake, but inthat six month period you can
change companies one time.
So if you didn't like yourcompany, the same thing.
Let's say you were in NewJersey, right.
And let's say you would havehad hospice and you decided to
(12:48):
move to Louisiana to be closerto family you could have had
your hospice transferred.
Your hospice up there wouldhave transferred you to a
company down there.
Speaker 3 (13:01):
That's good to know.
Speaker 4 (13:02):
Yes, and the other thing is to remember when you're
in hospice, you are not homebound.
The goal is generally what Iwould always ask my clients when
I went in to assess them iswhat is your long-term goal?
What is your long-term goal?
And now tell me what yourshort-term goal is.
If one of their goals theywanted to achieve was to go on a
(13:25):
cruise, we have sent them on acruise with emergency meds and
phone numbers, and we connectedthem through hospices all along
the way, because it's about life, living it until it's no longer
that option, and so you're notstuck, you can go, you can do,
(13:46):
and that hospice should be ableto help you do that.
Speaker 2 (13:50):
Wow, all right, kari, yeah, someone asked and I guess
this is a good question.
Should I include hospice carein my advanced care planning?
Speaker 4 (14:04):
Yes, okay, planning, yes, okay.
Now let me um when we'retalking about advanced care
planning, because there's adifference in advanced care
planning and advanced directive.
The advanced directive is whatyou fill out after you sit down
and talk about your advancedcare planning, but you need to
let whoever's working with youto help you with your advanced
(14:24):
care planning to know I choosenot to be on life support, I
choose not to be resuscitated, Ichoose not to have
life-sustaining interventions, Ichoose not to be given.
Some people choose not to haveantibiotics, some people choose
you know what I'm saying.
So, if so, when that comes, Ichoose to have a hospice to
(14:51):
provide my care in my home.
Okay, so then you've written itout so that everybody will
follow your wishes.
So I think it should be part ofit.
A advanced care planningmeeting, it needs to be
discussed, and I think that thenyou need to make sure you have
(15:12):
an advanced directive.
I guess some states call it aliving will still, but it's an
advanced directive that saysthis is what I want and, in my
inability to make that decision,this is the person I have
designated to make that decisionand to follow my wishes yeah,
(15:32):
so, um, someone asked us to askwhat type of medications.
Speaker 3 (15:36):
Well there's, I'm throwing an extra one in there.
Do they have to stopmedications when on hospice, and
and or what type of medicationscan are the ones be on while on
hospice?
Can they be on psychiatric medslike ericep, sleep meds, and
can they still see theneurologist, or do they have to
change to all hospice doctors?
Speaker 4 (15:56):
That's a misconception too.
Hospice does not make you stopyour medicine.
If you go under with Lewy Bodyand the medicines you're on are
still providing you quality oflife, they're still working.
You're swallowing them.
They're paid for Hospice thatgoes under their hospice
(16:17):
criteria, so it's paid for.
You don't need to Now.
The nurses will tell you whenit's probably time to maybe look
at changing things.
You know, maybe we need to gooff this we're.
You know, let's get rid of someof these meds because they're
not having as much um, notswallowing as easily.
So we need to look at doingsome things different.
(16:39):
You do not lose your doctor.
You can still keep your doctor.
Now, when you're talking abouturologists, is that your primary
doctor for your Lewy body?
And if it is, then he canchoose to stay and he can he'll.
What he'll do is when you go tosee him, because I'm assuming
(17:01):
you want to continue to see him.
He's not going to come to thehouse, but if you continue to
see him, then that is, his billis billed with hospice.
Okay, he works that out withhospice, but you don't have to
get rid of your primaryphysician for your illness.
Speaker 3 (17:19):
Hmm, well, that's good.
Well, that's good to know and Iknow you've already answered
the next one about they don'tstay with you 24 seven, but
there's, you can contact someone.
Speaker 4 (17:31):
That's right.
Um, when end of life is ispretty imminent and we'll say
like the last couple weeks, thenthat nurse is probably going to
say it's time for us to comedaily.
Okay, you need the support andwe need to have hands on and
eyes on, and so you're going tosee them daily.
But if you call and say I wouldlike a visit, they're going to
(17:54):
always come.
That's their responsibility.
That's what they're going to do.
Now.
Sometimes, yes, that nurse isgoing to be right there when
that patient takes that finalbreath, because they came and
things went down fast or theyknew they were going to go and
they're going to stay.
They're going to try to stay.
They were going to go andthey're going to stay, they're
(18:15):
going to try to stay.
You know, I've never I've neverpersonally experienced myself
or any nurses I've worked with,that said, well, he's going to
die in the next hour or so andcall us when it happens.
They just okay, so, but whatthey don't do is that last week
(18:37):
they're not going to beproviding you nurses around the
clock.
No, but by then you're going tobe so comfortable with doing
the care.
Hopefully you know if they'vebeen with the team for a while.
That's another reason don'thold referral off so long.
Speaker 3 (18:49):
Yeah, now I two things real quick curry before
you do yours.
What if?
What if the person say hadthree back surgeries and can't
like lift or move or do any ofthat and they're not capable of
doing what's needed?
Will hospice have somebody comeevery day?
Speaker 2 (19:07):
then, if that's the case, they might get you a lift.
Speaker 4 (19:10):
Maybe, I don't know they provide a, a Hoyer lift.
They provide equipment-wise thethings that are paid for by
equipment-wise Hospital bed, airmattress or pressure-reducing
mattress.
They will provide side rails,bedside commodes, wheelchairs,
(19:32):
walkers, oxygen.
You know, hoyer lift, all ofthose things can be provided by
that hospital at no charge tothe.
They do have a formulary that'sput out by the government.
So you know, there's somethings you're not going to get.
(19:53):
You're not going to get, you'renot going to get a ten thousand
dollar pressure bed no, dang it, I know I know but but they
have to, so they have to.
There's some things that theyhave to say no, I can't provide,
but those are generally thethings that all hospices, I
think in the united states,provide and, you know, hospice
around the world.
It's going to be different, butyeah, um, yeah, um.
(20:14):
And the last question, thisaround the world, it's going to
be different.
Speaker 3 (20:15):
But yeah, yeah, um, and the last question, this,
this one goes back because Isaid that people were still
sending me questions after Isent you what we were going to
talk about.
This one kind of took me bysurprise.
Um, somebody asked, when youask clarifying questions, if the
diagnosis qualifies.
Her husband was dischargedbecause he was gaining weight.
Just because he was gainingweight.
Speaker 4 (20:39):
Okay.
Well, now I want to remind youall that I'm not diagnosing
either.
Okay, I can't cure you, treatyou or any of those things I'm
going to talk to you from myexperience, things I'm going to
(20:59):
talk to you from my experience.
They could not and should nothave discharged before that
six-month period.
Okay, at the end of thatsix-month period, yes, that
patient has to be recertified.
So that means they have to havethat same assessment Now.
They have to have that sameassessment Now.
Myself, when I had any patientthat had Alzheimer's, dementia,
(21:19):
lewy bodies, I knew that therewere some things that could keep
that patient in, even if we hadsome weight gain.
Because, guys, maybe when wesigned them up they'd lost
weight because they'd been sick.
So they're going to naturallygain weight when you improve the
quality of their life.
So what we do is we measurecircumferences arms, legs, chest
(21:57):
we look at daily intake, welook at how much fluids they can
take.
Are they having some silentaspiration?
How many falls have they hadrecently?
And so what gets that patientrecertified is painting a really
good picture of what's trulygoing on with that patient, with
that patient.
So now, if the patient Reallydid, if they gained 20 pounds
(22:19):
and it wasn't fluid and they,their vocabulary, increased.
They were holding their head up.
You know they weren't startingto hump over Because you know,
and I, sometimes they startlosing that ability To hold your
neck up or your.
If those things are all of asudden improving, maybe they are
(22:43):
going to be e-certified.
Does that mean they can't comeback to hospice?
Nope, they can come backanytime they want.
Speaker 3 (22:50):
So is it every six months?
They get evaluated,re-evaluated, no matter what.
Speaker 4 (22:54):
Yes, yes, every six months get evaluated,
re-evaluated, no matter what.
Speaker 3 (22:58):
Yes, they okay.
Yes, every six months, okay,okay, so but that's called a
certification period but I'mglad I asked that question
because now that the girl who umasked that question will know
to have them doing thatmeasuring of body parts to you
bet Measure, you know, becausejust because someone has gained
(23:19):
some weight does not mean theydidn't lose muscle mass.
I was just going to say thatbecause my husband's gone from
220 down to 180, but he snacksall the time and I don't have
the heart now to tell him not tosnack.
I'm like you eat what you want,so he's got a little belly, but
I'm telling you he snacks allthe time and I don't have the
heart now to tell him not tosnack.
I'm like you eat what you want.
Speaker 4 (23:36):
So he's got a little belly, but I'm telling you he
has no muscle, like he can'teven lift that way he lost was
his muscle mass and that'sthat's what moves them to
frailty and any patient thatmoves over the line of frail.
Frailty means that generallyyou have a couple incidents in a
disease process that declinesthem.
(24:00):
But once they hit a frailty,there's been so many studies
done, and they did some studiesin nursing homes and they found
that women who get a secondurinary tract infection in a
nursing home generally crossover the frailty line and they
will always be gone in sixmonths.
Same thing with fractured hips.
(24:22):
And so you have to look, youhave to do those circumference
meds, you have to look at.
Okay, so they're eating, but isit because the spouse is
feeding them?
Can they no longer feedthemselves?
You know, you got to paint thepicture and a good nurse will
paint the picture.
Speaker 3 (24:43):
We're going to keep asking Vandy some more questions
, especially asking her aboutthe biggest challenges and
misconceptions about hospice.
So we knew this was going to beat least a two-parter.
It's going to be a three-parter.
Sorry, no, we knew it, curry,and I knew it because, vandy, we
(25:05):
try to keep them around 30, 35minutes, so it's perfectly fine
that it's long because this issuch an important topic.
So stay tuned everyone.
We'll be back with part threein a minute.
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