February 4, 2025 • 45 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
This episode provides valuable insights into hospice and palliative care for families dealing with Lewy Body Dementia. Vangie shares her expertise on navigating care options, eligibility criteria, funding, and the importance of early intervention.
• Differences between palliative care and hospice care
• Variability in palliative care access across states
• Understanding payment for hospice services
• Importance of early hospice involvement
• How families can request a hospice evaluation
• Tips for choosing the right hospice provider
Feel free to share the podcast link with your doctors and family as we seek to spread awareness and understanding about Lewy Body Dementia and its unique challenges.
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.
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https://patreon.com/lewybodyrollercoasterpodcast
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Thank you for listening each week.
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If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
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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.
Let's get started.
Speaker 3 (00:39):
Welcome back podcast family.
Speaker 2 (00:41):
Yes, welcome back y'all.
Speaker 3 (00:43):
And we just want to keep giving shout outs everybody
for being patient.
When we don't, when an episodedoesn't drop on a wednesday, um,
we've been good at getting themout every week.
It's just sometimes, you know,life gets in the way, but I
think we've been good the pastfew weeks yeah, knock on wood,
yeah.
Speaker 2 (01:01):
So thank you all for being so patient and supportive
as we try to get these thingsout on time.
Speaker 3 (01:05):
We we really appreciate you yeah, and before
we start the episode, we justremind all of our listeners that
it's important to us that youall and the medical community
hears from those affected withthe disease.
So please feel free to sharethe podcast link with your
doctors and family because themhearing it from the people, with
Louie and their caregivers,really I think it will help,
(01:29):
especially if you have anybodyin denial that that could really
help out.
So feel free to share that.
And I believe we posted the QRcode on their announcements.
I don't know if it's underannouncements.
We have to check.
It is yeah, so that's that'sjust, or you tech savvy people,
(01:49):
you can use the QR code and getto all the episodes.
Speaker 2 (01:54):
Yeah.
Also, I want to remind you allthat if you'd like to be a guest
and share your story in hopesof helping others, please
contact Linda Zapula or myselfthrough Facebook Messenger or
through our email, which islouisbodyrollercoaster at
gmailcom.
We'd love to have you on theshow.
Speaker 3 (02:12):
Yep, and we post to Patreon and GoFundMe links at
the bottom of the episode notesand each link is also under the
announcements on both pages.
I say that with a question inmy voice because I believe they
are right.
Curry, they are, yeah.
So we're going to throw out achallenge to see if we can get
five new supporters in the monthof September.
Speaker 2 (02:34):
And, as a reminder, we're not giving medical advice,
but we're just rather sharingour open and honest feelings and
thoughts as we live with Lewybody dementia.
So now for a shout out to someof our supporters We've got
Matthew and Miriam Garacci,marsha Treffman, vicki Sederberg
, ted Wankler and Karen Klinkthis week, and so let's get this
(02:56):
week started.
Speaker 3 (02:57):
A few weeks ago I think it was by the time this
episode you're listening to thisepisode.
It was maybe three weeks ago.
You all heard from Bonnie, whoshared her experience losing her
husband, randy, and how sherelied on hospice to help.
(03:18):
But she was asked by hospicepeople why did you wait so long
to call us, was asked by hospicepeople, why did you wait so
long to call us?
So I knew we had to findsomeone in the hospice field to
share with you all about thehospice experience and I sent
her I don't know how many 10pages of questions, maybe
(03:38):
Because we posted in our groupswhat would you like to know and
everybody just kept sendingquestions.
So we're going to have somebodythat's going to help us navigate
a little.
Speaker 2 (03:52):
Yeah, this week we've got Vanjie and Vanjie welcome
to the podcast, and can you tellus a little bit about yourself
and your experience with hospice, what you do and all that good
stuff?
Speaker 4 (04:04):
Yes, Corey, Thank you very much.
My name is Vandy Jones and I'ma registered nurse.
I'm also a certified holistichealth coach and I spent 20
years working in hospice and Iam retired from hospice now, but
I'm still actively working withclients or patients who have
lots of chronic diseases, andwhat I do now is I help them
(04:28):
look at a holistic approach thatcomplements what their
physicians are doing to helpimprove their quality and their
just their joy for life.
I'm also a wife and a motherand I have five great beautiful
grandchildren, so they keep meyoung or they may age me, I'm
(04:49):
not exactly sure.
Anyway, so even though I'm notactive in hospice at the moment,
I feel very qualified.
It was the greatest joy andhonor of my life to spend 20
years with probably thousands ofclients and their families
(05:10):
during that end-of-life process,which can be a very beautiful
experience with hospital.
Speaker 2 (05:16):
Boy, we got a lot of questions for you.
Yeah, we do, that's all right.
Speaker 4 (05:20):
Bring them on First of all.
Speaker 3 (05:22):
Can I borrow a couple grandkids, because you all know
I want grandbabies and I'msorry, andrew, that's my son.
I love you, andrew, and I getit.
I'm waiting for his brother.
My son, who edits, doesn't wantkids.
He said I'm like oh, what I'mlike, all right, I respect that.
Now, anyway, I always like to,I'm, I'm, I'm open for being an
(05:44):
adoptive grandma to anybody.
Speaker 4 (05:46):
There you go.
Speaker 3 (05:48):
So, as I said, I posted on the Facebook pages
that we were going to havesomebody come on.
So let me start with one of thepodcast, because a girl had
lost her husband and she wantedto tell us about it and most of
(06:11):
us were like what the heck ispalliative care?
So I think most people knowpalliative care and hospice, but
can you tell us what thedifference?
Speaker 4 (06:19):
is yes, because there is a difference.
Because there is a differenceAnybody can go under palliative
(06:48):
care at any time that has anillness whether it's cancer or
coronary artery disease ordementia, alzheimer's antibodies
but they have symptoms or maybethey need financial assistance,
or maybe they need psychosocialsupport or physical symptom
management, and so that's whatpalliative care is, and nowadays
it's much better.
Years ago there were very few.
Most hospital entities havepalliative care disciplinary
team approach.
Hospice, on the other hand, isa multidisciplinary team that
(07:13):
looks at end-of-life.
Their goal is, of course,they're never going to hasten
death.
It's not going to happen.
They're not going to evendiscuss it.
They accept the dying processas a part of the life cycle and
their goal is to provide qualitycare and provide that in a team
approach, which is an entireteam.
(07:35):
That's not just for the patientbut also for all the caregivers
and children in that situation,and they follow that family,
they provide that support, andso that's the difference in
those two.
Speaker 3 (07:53):
Now I have a question for you.
I moved from New Jersey to NewOrleans area and in New Jersey
my husband had palliative carewhere he was getting OT and PT
and it was.
We had to cut it down to onebecause it was just too much for
him.
But when we came down here Iimmediately called someone about
(08:17):
getting him palliative care andthey sent somebody out a few
times and they said well, he'sto the point where we can't take
him to the next step.
So palliative care is not anoption anymore.
And I'm like what?
In New Jersey we were going tohave it until we moved to
hospice, but down here they'resaying the analogy she said to
(08:39):
me was it's like if somebodyfalls and breaks their hip and
then we help them to get walkingagain.
If somebody falls and breakstheir hip and then we help them
to get walking again, but withmy husband's disease he's
declining.
So they said, because we reallycan't get him any better, we
can't come out anymore.
Speaker 4 (08:53):
So that's been a very frustrating um, yeah, and I
don't understand that, unlessyour palliative care was through
a home health agency and homehealth guidelines state.
If a patient cannot progress,they're done, but palliative
(09:14):
care is all about meeting themwhere they're at and improving
where they can and then keepthem improving and improving
where they can and then keepthem improving.
So I don't know if I wouldn't.
What I would tell you issomething I'm going to say again
in this podcast that you needto contact at your state level
(09:36):
the Hospice and Palliative CareAssociation for your state and
then call the number.
It'll be on.
When you Google the number foryour state is.
Then call the number.
It'll be on.
When you google, the number foryour state's going to come up
and you can call and get alisting of palliative care
centers in your state.
Speaker 3 (09:58):
You can also ask that person in this state what are,
what are the guidelines forpalliative care, because maybe
is there different um from stateto state yeah, I can tell you
they are, because when we didthat podcast, people were going
and trying to get palliativecare and it's and we're going to
ask that later on about ishospice different from state to
(10:20):
state?
Because I can tell you, as amatter of fact, palliative care
is which right I don'tunderstand.
I mean, I'm clearlyexperiencing that moving from
one state to the other.
If I would have known that Ithat would have been a factor of
me not moving for sure I'm sure, vanjie.
Speaker 2 (10:39):
I think the number one thing people want to know,
and and the most asked questionwhen we start talking about
hospice, is who pays for hospicein their services and is it
different from state to state?
Speaker 4 (10:53):
so medicare, medicaid , private insurance all of those
pay for hospice services.
Okay, now, if someone is onMedicare or Medicaid, all their
services under hospice are paidfor all of it.
If someone has privateinsurance, there may be a life
(11:19):
amount that can be out.
You know, like, okay, if youmeet a million dollars, we're
done, it can be out.
You know, like okay, if youmeet a million dollars, we're
done.
But generally nowadays, allprivate insurances do pick it up
.
There is also a fact thatnobody can be denied hospice,
regardless of their ability topay, so they will find that
(11:44):
funding somehow for a client.
Now I recommend to make surethat happens, that what people
look at is a Medicare certifiedhospice and a not-for-profit,
both together, and so a lot ofthose may be hospital-based, but
(12:08):
because of that thing so thatif a patient because in my 20
years I've had plenty ofpatients that had no funding
none they were homeless and weprovided the same care and the
same level, so it can be doneFor sure Is it different from
(12:29):
state to state, which I think iswhat your next part of that is.
And oh, and let me back up aminute, I'm so very sorry.
So now we have a lot ofAdvantage Medicaid and so you
still have to meet yourAdvantage's guidelines.
(12:50):
So if you, that means you haveto do their in-network situation
.
So if they have an in-networkhospice, that's who you have to
go with.
It's not going to be a personalchoice per se and you may still
have some co-pays.
That's up to them, and I'm that.
They're so relatively new thatall I can tell you is what I
(13:11):
have myself investigated to seewhere they're at and it is
supposed to.
I'm telling this so that all ofyour Lewy Body family members
know Advantage Medicare is topay per hospice, exactly like
Medicare standard hospice.
(13:31):
So there should be no charging,just so they in case they need
to fight that a little bit.
Sometimes.
You have to be your best ownadvocate.
Speaker 3 (13:40):
Oh, you're preaching to the choir sister.
Speaker 4 (13:43):
Yeah, yeah, I tell all my clients become advocates
of your family and your ownhealth.
Speaker 3 (13:49):
That's like a whole other tangent Medicare Advantage
.
Is that separate from justhaving Medicare?
Is that an?
Speaker 4 (13:57):
additional plan.
That is a specific type thatthey decided to choose.
When they went on Medicare Iwas given that same advice.
You know you want to, and sowhat it does is they offer a lot
of other things that regularMedicare does not pay for, like
dental glasses.
They send you stuff but youhave to see their doctors in
(14:18):
their in-network and stuff likethat, and once you're in that
you can change to anotheradvantage.
But I don't know that you cango back to regular Medicare.
But that's a personal choice.
That's not my choice.
And the other part of thatquestion was is it different
from state to state?
Hospice is never.
(14:39):
The hospice criteria is notdifferent for state to state.
But again, with being your bestown advocate, some hospice
agencies are not going toprovide all of the same things
that another would, okay.
So I have a 10 point questionI'm going to give everybody as
(15:02):
we go through on how to find youa good hospice and the
questions you need to be askingto advocate for yourself.
Speaker 3 (15:11):
So when we get to that question, we'll cover it.
Okay, so is it governed byprivate, state or federal
guidelines?
That sounds like it is.
Speaker 4 (15:18):
Yes, medicare criteria, hospice, they're all
surveyed by federal agencies andstate agencies and Medicaid, of
course, is a state agency andso, yes, they are all governed.
They have to meet and one ofthe ways you can even check to
(15:39):
see if this is a company youwant to pursue is you can go to
your state Costas and PalliativeCare and you can look up and
they have to document wherethere have been complaints and
were they life-threatening andstuff, so you can kind of weed
(16:00):
through the jungle.
They have to meet some type ofcriteria and that's why you want
to.
Really, if it was my family andit will be one day, okay, so if
it's my family, I want them tohave an agency that is Medicare
certified or at least statefederally certified at some
(16:22):
entity, so I know they're takingthe proper care.
I know that there are hoops.
They've got a jump there tomeet that.
Speaker 3 (16:35):
well, that's, that's good to know for sure.
Now I read on the nihgov sitethat medicare reimburses for
hospice when a doctor determinesa patient has six months or
less to live.
Is that that true?
With Lewy body, because we'reall kind of like Cara and I had
a little thing and speaking tothe spouses in my group being,
(17:00):
this disease is so unpredictablewe don't.
For instance, my girlfriendBonnie, it was like what was it?
34 days ago Randy went todinner in the movies with their
son and her and now, two weeksago he passed away and she
didn't call hospice until it wasthe last two weeks and that's
(17:24):
when they said why did you waitso long to call?
So that's why we want to.
We've heard things back andforth that some people have said
as soon as you get thediagnosis you're eligible for
hospice and from what I'mreading, it says the sooner we
get hospice involved, the betterit is for hospice and us it is.
Speaker 4 (17:45):
However, if you're going under the primary
diagnosis, okay.
Now, hospice can get aroundprimary diagnosis, sometimes by
putting them under a generalizedthing.
But when we do that, you losethe ability for hospice to pay
for your Lewy Body Meds.
Okay, so you want to fall underthe and you come under,
(18:10):
unfortunately, the big umbrellaof Alzheimer's.
You just do.
And so for a Lewy body patientto be eligible for hospice, they
have to meet on the FAST scale,which is a.
It's called the ReisbergFunctional Assessment Staging
(18:32):
Scale and that's, if you want tolook it up, r-e-i-s-b-e-r-g
Functional Assessment StagingScale.
It's been used for years, guys,to kind of fit that mode, and
it's a 16-item design toparallel the progress for
depressive movement of a disease.
(18:55):
The problem lies for Lewy bodiesin the fact that they have to
meet the criteria under this.
They have to be equal to orgreater than stage seven, and
I'm going to tell you what stageseven involves in stage 7.
And I'm going to tell you whatstage 7 involves.
So stage 7 is loss of speech,locomotion or consciousness.
(19:21):
Stage 7A is the ability tospeak is limited for up to 5
words.
Stage 7B, they have to have allintellectual vocabulary lost.
So you can see where we'regoing.
You're really far down on thisthing.
They have to be non-ambulatory,unable to sit up independently,
(19:44):
unable to smile, unable to holdtheir head up.
Documentation has to prove someof that.
However, they can meet the restof that scale, which is easier
because they're going to combine, because it has to become
greater than 2 or equal to 7.
(20:05):
So it could just be complaintsof forgetting locations of
objects.
It could be okay.
They've got two.
Now let's say stage three Dothey have decreased job
functioning difficulty travelingfrom one situation or location
to another?
Stage four do they havedecreased ability to perform
(20:29):
complex tasks?
Decreased ability to dressthemselves, bathe themselves,
put their clothes on properly,toilet independently, unable to
bathe properly or maybe they'vedeveloped that fear of bathing
that happens.
Or inability to handle themechanics of toileting, like
(20:52):
they forget to flush or theyforget to sometimes wipe
properly.
Incontinence, both fecal orurinary, loss of speech.
So they can be combined.
They can be some of these andsome of these.
So what I tell people is don'tbe discouraged by this, okay.
So what I tell people is don'tbe discouraged by this, okay,
because they're also going tolook at what is this client's
(21:17):
comorbidity?
Do they have heart disease.
Oftentimes you do have a lot ofcardiovascular problems.
Blood pressure issues Do theyhave?
Maybe they have diabetes, Maybethey have some pressure stores.
So there's lots of ways to addthese up.
Speaker 3 (21:37):
Carrie, are you adding these up in your head?
I am One of the people postedon her Facebook page that she
was holding back tears from whatBonnie went through.
But she was laughing because Iwas giving Carrie a talking to,
(22:01):
because I'm like you need to getyour wife to call.
Speaker 4 (22:05):
Well, here's the thing.
Here's the lovely thing.
I know you're going to come tothis question.
I know you're going to come tothis question.
This is really a nice time toreassure all of your members
that you don't need to wait fora physician because a
physician's not going to come in.
Most of them not mostphysicians are not going to walk
in your room and say it's time,it's time to get, you know, get
(22:27):
hospice involved.
They're not going to do that.
Most physicians areuncomfortable talking about that
phase and in 20 years, trust me, I can tell you this you don't
need your physician.
You can call the hospice youwant to.
You can ask them to come out tocome do an evaluation.
(22:50):
They'll get a doctor's orderfor the evaluation.
They'll come out and make theassessment because they're the
ones that are determining canthey meet the criteria?
You know can they meet it, andso, or you call your doctor and
say I'd like to have just ahospice evaluation to see where
we're at.
It's a free evaluation.
Speaker 3 (23:13):
Yeah.
So if somebody a girlfriend ofmine in California called an
agency, I think it was through ahospital and they came out and
evaluated her husband and I justmet him a couple weeks ago and
I immediately said you need toget hospice in here.
But because he could walk, walk, they said he wasn't eligible.
(23:33):
And I'm like what because?
And so we said to her you needto start calling other agencies.
Like move away from thehospital and, like you said,
call other agencies.
Speaker 4 (23:46):
Yeah ask your friends get a referral.
Ask your church members, um,people you trust you know that's
how you get a referral.
Ask your church members, peopleyou trust you know that's how
you get a good referral.
And but you know, yes, theywould like them not to be
completely walking independently.
You know because then youreally because with hospice you
(24:07):
have to have a diagnosis that'sconsidered life-threatening or
six months or less.
Now at the end of that sixmonths they're reevaluated.
But we've put in a lot ofpatients with hospice that we
could see, because there's lotsof things that affect any client
(24:31):
with Alzheimer's, any kind ofform of that.
It could be blue bodies.
Anytime there's an infection,it almost accelerates things for
a little while and then theyplateau.
I'm sure you all have seen that.
So if they've had any diagnosisand been treated for an
infection a pulmonary infectionthat was bacterial, due to some
(24:53):
slight aspiration, they didn'tmaybe know.
They know urinary tractinfections.
Those are added to this abilityto stage them and get them in.
Speaker 3 (25:04):
Now, sorry, I'm going to go back to my friend because
I was really angry when shetold me that hospice says they
couldn't help her.
So if I get her this list, thisassessment list, yeah, she can
get that right off the internet.
Yeah, I'm going to post it as alink.
What I'm hearing is print thatout and you go through and you
highlight the ones that yourloved one meets, meets, and then
(25:28):
say but just because he,because, just because he's
walking, he, some people atlouis body become not able to
walk.
And then there's some that justfollow their loved ones around,
like like you know, like likelike right there all the time.
So we're trying to get louisbody out from underneath the
(25:50):
alzheimer's umbrella becauseit's.
Speaker 4 (25:52):
It really needs to be removed.
Speaker 3 (25:54):
Yeah, yeah.
That's why we're doing this.
Podcast is like scream at therooftops because it's not it.
You can't put it on there.
Speaker 2 (26:02):
Totally different.
Speaker 3 (26:03):
Just yeah.
So if you're listening, printout that list and we'll we'll
put it on the Facebook pages too.
And I just and we'll put it onthe Facebook pages too.
And we always tell everybodyyou got to be prepared, because
I know you know, vandy, thatpeople will Louis body show time
.
You'll go in and, like Curry'sdoing right now, curry always
shows thankfully, curry, thankyou for show timing when we
(26:26):
record and then he crashes.
It's just yeah.
We got to work on getting itout from underneath that
umbrella.
We're appreciative that it'sincluded, but we got to work on
that.
Speaker 2 (26:40):
Vangie, along with that last question, who makes
the determination when or towhat extent hospice is available
?
You know we see our doctorsevery six months or so.
Can a spouse make the call to adoctor and request hospice, or
does it need to be the patient?
Speaker 4 (27:00):
No, no, it can always be the family member.
No, the spouse can, thedaughter can anybody, if the
patient is in agreement, becausethis is their end of life and
this is their story, so it'sfamily-centered.
(27:21):
But yes, they can call and sayyou know, I would just like to
have a hospice eval.
Would you refer us?
I don't understand anythingabout that social worker that
was talked about earlier, but I,you know, I would think she
could get an eval a lot sooner,just by start moving those
(27:43):
wheels herself.
But yeah, anybody can talk toyour doctor.
He can refer.
He's probably been using sometypes of hospice.
Tell him be your advocate.
Say I would like we might notmeet criteria, but I would like
him to come and make anassessment.
(28:05):
So I know where we're at andyou definitely can do that.
Your doctor can order it.
You could call hospice yourself, ask to speak to whoever's in
charge of the intakes and askthem could you get a doctor's
(28:25):
order to come, because they havea medical director that can
give that order.
It doesn't have to be yourprimary doctor.
I have a medical director thatcan give that order.
It doesn't have to be yourprimary doctor.
Speaker 3 (28:40):
So definitely, you can get an order for lots of
ways.
Hear that, curry.
Yes, sorry, I'm not picking onyou.
I am not picking on you, I am.
Yeah, you are.
I am, yeah, you are I know, butI'm doing it because again
sorry the teacher in me what I'mhearing Vandy tell us all is
even getting it before you thinkyou qualify.
(29:02):
So at least you've beenevaluated.
So when then you take that nextdecline, they can come out and
compare.
Is that right, exactly?
Speaker 4 (29:10):
Yes, because decline is where it's at.
Speaker 2 (29:17):
You hear?
Speaker 3 (29:18):
that, curry, I heard that.
I'm sorry, it was that onFacebook that was cheering me on
for picking on you.
Yeah, I remember that.
I do it with love.
You know that because you canshow her your elbow after we're
done this.
Yeah, yeah, because he's havingissues with um bed sores bed
sores on his elbows.
(29:38):
That's one of the checks I wasdoing.
Speaker 4 (29:41):
I should have been yes, and that's one of the
checks that gets him.
I don't know where curry lives,but gets him immediately for
palliative care, which is paidfor under the same umbrella.
Yeah, so even if they sayyou're not ready for hospice,
say well, I need some help.
So you either got to send inhome health or you got to send
in palliative care.
Speaker 2 (30:02):
Yeah, I've been having trouble with them the
last couple of years.
Speaker 3 (30:06):
Everyone listening.
You all know how much I loveCurry.
Yeah, I think you should dothis and if you're listening,
you have Lewy body.
Do it for your loved ones.
More so if you even if youdon't think you need it cause I
know, curry, we we've asked youin the zoom groups, like who's
taking care of your, your sores?
(30:26):
And you're like, oh, linda doesall that.
But that would relieve her fromhaving to do that and they
would have medical people thereto make sure if it's not healing
by so many days, they could dosomething else yes, and that,
and even home health can do that, and it's going to be paid for
by medicare too.
Speaker 4 (30:43):
they'll send to ari, and on a regular basis, to do
wound care and to measure it andto make sure it's healing and
if not, then they're going tolook at, um, maybe a wound
center which can be taken careof too, so under palliative care
.
That's what it's about.
Speaker 3 (30:59):
Any symptom management, any physical therapy
, any social work that you need,anything so they could
basically, like in Curry's case,help him heal that wound and
then help him do whatever heneeds to do to try to avoid,
because they come back every nowand then right curry, yeah,
(31:20):
yeah, yeah, um, it's an ongoingproblem yeah, yeah.
So, um, yeah, I think you, yourwife is amazing, she's been
doing an amazing job.
But you know, it's what I'mhearing is.
Speaker 4 (31:37):
It would give her some.
I always tell people there'snot a caregiver I haven't met,
that is not an angel and anexcellent nurse.
They make excellent nurses.
All family members can, as allfamily members can, but it takes
(31:59):
a burden off them to have thatextra eyes on and to be able to
say they're doing it right andto help them, to teach them.
So sometimes we have to look atour caregivers and say they
need the help.
I might not need it, but theydo and that's a good thing.
Speaker 3 (32:15):
Yeah, yeah, that's good and I think you answered.
At what point in the Louisjourney is it appropriate to
contact hospice?
Now, I'm assuming.
Well, the normal progressionwith this disease, as I'm sure
you know, is with my husband.
He was diagnosed with mildcognitive impairment in the very
(32:36):
, very beginning, like sevenyears ago, and then that changed
to Alzheimer's and then itchanged to Lewy.
So what point in the journey isit appropriate?
Is it too soon?
When you're well, I don't wantto say when you're first
diagnosed, because some peopleget diagnosed and they're well
into it.
Speaker 4 (32:53):
Well, you know exactly.
You know that each Lewy bodyclient or patient is different,
and some decline very rapidlyand some not so rapidly.
Some live past the expectations, some don't even get a year.
And so when it's appropriate iswhen you see them declining to
(33:19):
the point and this is what Iwould tell everybody when we
have weight loss, when we arestarting to see maybe behavioral
changes, maybe some aggression,maybe some more agitation, more
restlessness, when we see themsleeping more all the time, when
(33:39):
we see them falling, or all ofa sudden we're having
incontinence and we're afraid ofthe shower, that's the time,
that's the time to say you knowwhat?
I just need some eyes on andlet someone decide where we're
at, and definitely if we'reseeing any infection, because
(34:04):
they're going to rear their uglyheads and it might be
infections and wounds or itmight be it's generally urinary
tract or pulmonary, but becauseof the potential for silent
aspiration.
But I would have no hesitationif in fact, I have a.
(34:27):
I don't know if everybody knowsthat, but I didn't mention it
but I've had two brother-in-lawswith Lewy bodies.
One is already moved on, hisjourney's been finished, and the
other one is very active inthis group.
But I would say that evenpalliative care at this point
(34:49):
would be an excellent option forhim.
But just getting the referraland finding out, that's the
thing.
And if you have othercomorbidities, not just Lewy
bodies, if you havecardiovascular disease or maybe
you have COPD or maybe you havechronic urinary tract infections
(35:11):
or maybe you have diabetes,those comorbidities make you at
a bigger risk for decline, andso you fit quicker sometimes
into the um, into that criteriathat you met, because there is
because there's no doctor onearth first.
(35:32):
First of all, that is God, andso whether a patient lives past
that six months or not is notthe situation.
Why you want to get hooked upin hospice sooner is because you
want to build a rapport and atrust and a relationship with
your team.
Each person gets their team.
(35:52):
They get to know you, you getto know them, you get to be able
to trust them and become morehonest and forthright with them,
and so the sooner that happensthe better.
We don't do anybody any goodwith hospice when we come in in
those last couple of daysbecause the dying process
started about three or fourweeks before.
(36:13):
Maybe we didn't see it, maybewe were too.
You know, sometimes ourcaregivers don't see it and
hospitals would come in and sayoh, there's been a big change,
and they're like what, what?
But they do.
They see it because they're notthere every day, and so the
sooner that you can get it thenthe better that is and you don't
(36:33):
have to worry about thatsix-month thing.
I know that question is comingup too.
Speaker 3 (36:36):
Yeah, yeah, and denial is a thing, caregivers,
it's a denial thing.
Speaker 4 (36:42):
Well, it's with every illness.
Speaker 2 (36:44):
Yes, vangie, I think you pretty much covered this,
but you might just touch on itagain.
How do we choose a hospice?
You know there's several in myarea, and how would I go about
choosing the right one orchoosing any of them?
Speaker 4 (37:04):
And I think that's one of the best questions
because that's overwhelming andespecially overwhelming for a
caregiver.
You know and I would tell youseveral you have several options
.
You can always go to your statesite.
You can go under hospice andpalliative care of the state of
Missouri and they will give youa list of them in your area.
(37:24):
Then you could start reviewingthem with some questions.
You're going to want to askthese.
You know some questions and Ihave these questions set up for
you so you can also go to yourstate Department of Health and
you can call them and you couldask them who.
(37:49):
You could ask them to reviewthe surveys, okay, so you could
find out who had deterrent, whohad things they needed to clean
up.
You could also just your doctor, your doctor's nurse.
They're using them in that area, they know them.
There's because there's hospicesand hospitals.
(38:10):
There's private, for-profithospices.
There's not-for-profit hospices.
There are hospices just in thenursing home.
Some nursing homes have theirown hospice units and companies.
So I would check with my doctorfirst.
I would make sure that thehospice again, I said this but
(38:31):
this is so important to mebecause there are guys all
hospices are not equal andunfortunately there are bad
for-profits, there's badnot-for-profits.
You know what I'm saying.
There's good and there's bad.
You want the very best for yourloved one, so check with your
doctor.
So check with your doctor.
(38:52):
And then the questions I wouldwant to know from these people
when I'm talking to them are youMedicare and Medicaid approved?
Because that tells me, eyes arecoming into that building
unannounced and they are readingcharts and they are making
visits out in the field and theyare monitoring.
(39:13):
Number two does the hospicecompany provide equipment?
Do they provide nurse aid?
Do they provide counseling,brief support and registered
nurses to make those visits?
Be specific about that, becausewhen they say, oh yes, there is
(39:35):
a nurse and don't get wrong, Ihave nothing wrong with LPNs.
They can make those visits.
But it is against the law inalmost every state in this
nation for an LPN to change amed order, you know, without
supervision.
And so you want to make surethat it's RNs that are coming in
(39:57):
, if you can, on a regular basis, or that are overlooking the
plan of care at least, and thatyou're seeing an RN on a regular
basis.
Then how long have they been inbusiness?
You know, have they been inbusiness a long time and that
says a lot.
We have a hospice in SoutheastMissouri that's been in business
for over 40 years and they weredoing hospice before hospice
(40:20):
was called hospice, so it says alot about them.
So are the services medication,equipment what are?
What are they going to provide?
You want to know that they'reproviding their medications.
You want to know that they'reproviding equipment, all of
(40:41):
those things.
Are they available 24 hours aday?
Now, this is one of thosemisconceptions.
People think that hospice cancome in and provide care around
the clock.
That's not what hospice does.
The goal of hospice is toeducate the caregiver in the
care.
But when we say 24-7, thatmeans do you have a direct
(41:06):
person I'm going to talk to onthe phone, and how long will
they take?
Where is your nearest facilityin regards to you?
You want to know how long wouldit take for that nurse to get to
your house in an emergency orin the middle of the night?
You need to know that If theirnurse is 100 miles away from you
(41:32):
, 100 miles in the middle of thenight when you have an issue is
too much.
So you also want to know whoanswers that phone.
Is it an answering service.
Are you talking to a nurse?
Now?
Most companies nowadays aregoing to have an answering
(41:55):
service, so that's not the issue.
What's an issue is how long willit take before they return your
call, how long before the nursewill take to call you after
you've called in.
So you want to know that.
Do they provide inpatient unitcare?
(42:15):
Now, under Medicare guidelines,an agency needs to be able to
provide you respite care, whichmeans the family members have
one week a month that hospicetakes and puts them in an
inpatient unit or a nursing home, that they're over to give you
that break, and it is paid forby hospice.
(42:37):
Also, if, let's say, yourhusband had a symptom that could
not be gotten, could not bebrought under control at home
we've tried, we need to put himin inpatient.
Do they have that?
Or are they going to say youneed to get out of hospice and
you don't want them?
Okay, they need to be able toput them in, cover that charge
(43:03):
and then get them back home assoon as possible, as soon as
that symptom is under control.
Speaker 2 (43:07):
Would that be like a chronic UTI or something?
Speaker 4 (43:10):
It could be like, let's say, we have a pain
management problem and the painneeds to be converted from,
let's say, pills to maybe IV ormaybe a liquid form, and it's
going to take more than can bedone at home in a short period
(43:32):
of time.
The goal is never to have thepatient in a lot of pain.
So, yes, lots of times you putthem in, you get that pain under
control whether it's even maybeconverting over to patches or
whatever and then bring themback home.
So that's what that looks like,for sure.
And then do they have thatrespite care?
(43:57):
Do they provide volunteers?
You want volunteers, and allhospices that are Medicare
certified have to providehospice volunteers that have
been trained.
So what do volunteers do?
Well, it's kind of endless.
They can run errands, they cancome sit so the caregiver gets a
(44:19):
break and can go do what theyneed to do.
They can actually even docertain aspects of care.
So we want to know that theyhave those volunteers and
they're available to you andthat one is assigned to you
within that first two weeks ofcare.
Okay, what is your briefcounseling?
(44:41):
What kind of grief counselingdo they provide?
What kind of counseling do theyprovide?
What kind of social workers dothey provide?
Are they a bachelor's associate, or are they masters, or what
do they have to have?
So we want to know that.
(45:02):
We also want to know do theyhave a chaplain on board?
Because they need to providechaplain services.
Now a patient can decline thatservice, but they need to also
be able to provide it to thespouse if they want.
So those are the questions Iwould have for any hospice.
Speaker 3 (45:24):
Well, I'm going to be asking you if you can send
those to me so I can just listenback.
It's up to you.
So we're going to stop here fora bit, because we've been
talking for a while.
We try not to let the episodesgo too long, but you know
there's going to be a part twoon this, so we're going to pick
up next week with Vandy as weask her what specific services
(45:47):
there are.
So hang tight, we'll be backnext week.
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.
Let's get started.
Speaker 3 (00:39):
Welcome back podcast family.
Speaker 2 (00:41):
Yes, welcome back y'all.
Speaker 3 (00:43):
And we just want to keep giving shout outs everybody
for being patient.
When we don't, when an episodedoesn't drop on a wednesday, um,
we've been good at getting themout every week.
It's just sometimes, you know,life gets in the way, but I
think we've been good the pastfew weeks yeah, knock on wood,
yeah.
Speaker 2 (01:01):
So thank you all for being so patient and supportive
as we try to get these thingsout on time.
Speaker 3 (01:05):
We we really appreciate you yeah, and before
we start the episode, we justremind all of our listeners that
it's important to us that youall and the medical community
hears from those affected withthe disease.
So please feel free to sharethe podcast link with your
doctors and family because themhearing it from the people, with
Louie and their caregivers,really I think it will help,
(01:29):
especially if you have anybodyin denial that that could really
help out.
So feel free to share that.
And I believe we posted the QRcode on their announcements.
I don't know if it's underannouncements.
We have to check.
It is yeah, so that's that'sjust, or you tech savvy people,
(01:49):
you can use the QR code and getto all the episodes.
Speaker 2 (01:54):
Yeah.
Also, I want to remind you allthat if you'd like to be a guest
and share your story in hopesof helping others, please
contact Linda Zapula or myselfthrough Facebook Messenger or
through our email, which islouisbodyrollercoaster at
gmailcom.
We'd love to have you on theshow.
Speaker 3 (02:12):
Yep, and we post to Patreon and GoFundMe links at
the bottom of the episode notesand each link is also under the
announcements on both pages.
I say that with a question inmy voice because I believe they
are right.
Curry, they are, yeah.
So we're going to throw out achallenge to see if we can get
five new supporters in the monthof September.
Speaker 2 (02:34):
And, as a reminder, we're not giving medical advice,
but we're just rather sharingour open and honest feelings and
thoughts as we live with Lewybody dementia.
So now for a shout out to someof our supporters We've got
Matthew and Miriam Garacci,marsha Treffman, vicki Sederberg
, ted Wankler and Karen Klinkthis week, and so let's get this
(02:56):
week started.
Speaker 3 (02:57):
A few weeks ago I think it was by the time this
episode you're listening to thisepisode.
It was maybe three weeks ago.
You all heard from Bonnie, whoshared her experience losing her
husband, randy, and how sherelied on hospice to help.
(03:18):
But she was asked by hospicepeople why did you wait so long
to call us, was asked by hospicepeople, why did you wait so
long to call us?
So I knew we had to findsomeone in the hospice field to
share with you all about thehospice experience and I sent
her I don't know how many 10pages of questions, maybe
(03:38):
Because we posted in our groupswhat would you like to know and
everybody just kept sendingquestions.
So we're going to have somebodythat's going to help us navigate
a little.
Speaker 2 (03:52):
Yeah, this week we've got Vanjie and Vanjie welcome
to the podcast, and can you tellus a little bit about yourself
and your experience with hospice, what you do and all that good
stuff?
Speaker 4 (04:04):
Yes, Corey, Thank you very much.
My name is Vandy Jones and I'ma registered nurse.
I'm also a certified holistichealth coach and I spent 20
years working in hospice and Iam retired from hospice now, but
I'm still actively working withclients or patients who have
lots of chronic diseases, andwhat I do now is I help them
(04:28):
look at a holistic approach thatcomplements what their
physicians are doing to helpimprove their quality and their
just their joy for life.
I'm also a wife and a motherand I have five great beautiful
grandchildren, so they keep meyoung or they may age me, I'm
(04:49):
not exactly sure.
Anyway, so even though I'm notactive in hospice at the moment,
I feel very qualified.
It was the greatest joy andhonor of my life to spend 20
years with probably thousands ofclients and their families
(05:10):
during that end-of-life process,which can be a very beautiful
experience with hospital.
Speaker 2 (05:16):
Boy, we got a lot of questions for you.
Yeah, we do, that's all right.
Speaker 4 (05:20):
Bring them on First of all.
Speaker 3 (05:22):
Can I borrow a couple grandkids, because you all know
I want grandbabies and I'msorry, andrew, that's my son.
I love you, andrew, and I getit.
I'm waiting for his brother.
My son, who edits, doesn't wantkids.
He said I'm like oh, what I'mlike, all right, I respect that.
Now, anyway, I always like to,I'm, I'm, I'm open for being an
(05:44):
adoptive grandma to anybody.
Speaker 4 (05:46):
There you go.
Speaker 3 (05:48):
So, as I said, I posted on the Facebook pages
that we were going to havesomebody come on.
So let me start with one of thepodcast, because a girl had
lost her husband and she wantedto tell us about it and most of
(06:11):
us were like what the heck ispalliative care?
So I think most people knowpalliative care and hospice, but
can you tell us what thedifference?
Speaker 4 (06:19):
is yes, because there is a difference.
Because there is a differenceAnybody can go under palliative
(06:48):
care at any time that has anillness whether it's cancer or
coronary artery disease ordementia, alzheimer's antibodies
but they have symptoms or maybethey need financial assistance,
or maybe they need psychosocialsupport or physical symptom
management, and so that's whatpalliative care is, and nowadays
it's much better.
Years ago there were very few.
Most hospital entities havepalliative care disciplinary
team approach.
Hospice, on the other hand, isa multidisciplinary team that
(07:13):
looks at end-of-life.
Their goal is, of course,they're never going to hasten
death.
It's not going to happen.
They're not going to evendiscuss it.
They accept the dying processas a part of the life cycle and
their goal is to provide qualitycare and provide that in a team
approach, which is an entireteam.
(07:35):
That's not just for the patientbut also for all the caregivers
and children in that situation,and they follow that family,
they provide that support, andso that's the difference in
those two.
Speaker 3 (07:53):
Now I have a question for you.
I moved from New Jersey to NewOrleans area and in New Jersey
my husband had palliative carewhere he was getting OT and PT
and it was.
We had to cut it down to onebecause it was just too much for
him.
But when we came down here Iimmediately called someone about
(08:17):
getting him palliative care andthey sent somebody out a few
times and they said well, he'sto the point where we can't take
him to the next step.
So palliative care is not anoption anymore.
And I'm like what?
In New Jersey we were going tohave it until we moved to
hospice, but down here they'resaying the analogy she said to
(08:39):
me was it's like if somebodyfalls and breaks their hip and
then we help them to get walkingagain.
If somebody falls and breakstheir hip and then we help them
to get walking again, but withmy husband's disease he's
declining.
So they said, because we reallycan't get him any better, we
can't come out anymore.
Speaker 4 (08:53):
So that's been a very frustrating um, yeah, and I
don't understand that, unlessyour palliative care was through
a home health agency and homehealth guidelines state.
If a patient cannot progress,they're done, but palliative
(09:14):
care is all about meeting themwhere they're at and improving
where they can and then keepthem improving and improving
where they can and then keepthem improving.
So I don't know if I wouldn't.
What I would tell you issomething I'm going to say again
in this podcast that you needto contact at your state level
(09:36):
the Hospice and Palliative CareAssociation for your state and
then call the number.
It'll be on.
When you Google the number foryour state is.
Then call the number.
It'll be on.
When you google, the number foryour state's going to come up
and you can call and get alisting of palliative care
centers in your state.
Speaker 3 (09:58):
You can also ask that person in this state what are,
what are the guidelines forpalliative care, because maybe
is there different um from stateto state yeah, I can tell you
they are, because when we didthat podcast, people were going
and trying to get palliativecare and it's and we're going to
ask that later on about ishospice different from state to
(10:20):
state?
Because I can tell you, as amatter of fact, palliative care
is which right I don'tunderstand.
I mean, I'm clearlyexperiencing that moving from
one state to the other.
If I would have known that Ithat would have been a factor of
me not moving for sure I'm sure, vanjie.
Speaker 2 (10:39):
I think the number one thing people want to know,
and and the most asked questionwhen we start talking about
hospice, is who pays for hospicein their services and is it
different from state to state?
Speaker 4 (10:53):
so medicare, medicaid , private insurance all of those
pay for hospice services.
Okay, now, if someone is onMedicare or Medicaid, all their
services under hospice are paidfor all of it.
If someone has privateinsurance, there may be a life
(11:19):
amount that can be out.
You know, like, okay, if youmeet a million dollars, we're
done, it can be out.
You know, like okay, if youmeet a million dollars, we're
done.
But generally nowadays, allprivate insurances do pick it up
.
There is also a fact thatnobody can be denied hospice,
regardless of their ability topay, so they will find that
(11:44):
funding somehow for a client.
Now I recommend to make surethat happens, that what people
look at is a Medicare certifiedhospice and a not-for-profit,
both together, and so a lot ofthose may be hospital-based, but
(12:08):
because of that thing so thatif a patient because in my 20
years I've had plenty ofpatients that had no funding
none they were homeless and weprovided the same care and the
same level, so it can be doneFor sure Is it different from
(12:29):
state to state, which I think iswhat your next part of that is.
And oh, and let me back up aminute, I'm so very sorry.
So now we have a lot ofAdvantage Medicaid and so you
still have to meet yourAdvantage's guidelines.
(12:50):
So if you, that means you haveto do their in-network situation
.
So if they have an in-networkhospice, that's who you have to
go with.
It's not going to be a personalchoice per se and you may still
have some co-pays.
That's up to them, and I'm that.
They're so relatively new thatall I can tell you is what I
(13:11):
have myself investigated to seewhere they're at and it is
supposed to.
I'm telling this so that all ofyour Lewy Body family members
know Advantage Medicare is topay per hospice, exactly like
Medicare standard hospice.
(13:31):
So there should be no charging,just so they in case they need
to fight that a little bit.
Sometimes.
You have to be your best ownadvocate.
Speaker 3 (13:40):
Oh, you're preaching to the choir sister.
Speaker 4 (13:43):
Yeah, yeah, I tell all my clients become advocates
of your family and your ownhealth.
Speaker 3 (13:49):
That's like a whole other tangent Medicare Advantage
.
Is that separate from justhaving Medicare?
Is that an?
Speaker 4 (13:57):
additional plan.
That is a specific type thatthey decided to choose.
When they went on Medicare Iwas given that same advice.
You know you want to, and sowhat it does is they offer a lot
of other things that regularMedicare does not pay for, like
dental glasses.
They send you stuff but youhave to see their doctors in
(14:18):
their in-network and stuff likethat, and once you're in that
you can change to anotheradvantage.
But I don't know that you cango back to regular Medicare.
But that's a personal choice.
That's not my choice.
And the other part of thatquestion was is it different
from state to state?
Hospice is never.
(14:39):
The hospice criteria is notdifferent for state to state.
But again, with being your bestown advocate, some hospice
agencies are not going toprovide all of the same things
that another would, okay.
So I have a 10 point questionI'm going to give everybody as
(15:02):
we go through on how to find youa good hospice and the
questions you need to be askingto advocate for yourself.
Speaker 3 (15:11):
So when we get to that question, we'll cover it.
Okay, so is it governed byprivate, state or federal
guidelines?
That sounds like it is.
Speaker 4 (15:18):
Yes, medicare criteria, hospice, they're all
surveyed by federal agencies andstate agencies and Medicaid, of
course, is a state agency andso, yes, they are all governed.
They have to meet and one ofthe ways you can even check to
(15:39):
see if this is a company youwant to pursue is you can go to
your state Costas and PalliativeCare and you can look up and
they have to document wherethere have been complaints and
were they life-threatening andstuff, so you can kind of weed
(16:00):
through the jungle.
They have to meet some type ofcriteria and that's why you want
to.
Really, if it was my family andit will be one day, okay, so if
it's my family, I want them tohave an agency that is Medicare
certified or at least statefederally certified at some
(16:22):
entity, so I know they're takingthe proper care.
I know that there are hoops.
They've got a jump there tomeet that.
Speaker 3 (16:35):
well, that's, that's good to know for sure.
Now I read on the nihgov sitethat medicare reimburses for
hospice when a doctor determinesa patient has six months or
less to live.
Is that that true?
With Lewy body, because we'reall kind of like Cara and I had
a little thing and speaking tothe spouses in my group being,
(17:00):
this disease is so unpredictablewe don't.
For instance, my girlfriendBonnie, it was like what was it?
34 days ago Randy went todinner in the movies with their
son and her and now, two weeksago he passed away and she
didn't call hospice until it wasthe last two weeks and that's
(17:24):
when they said why did you waitso long to call?
So that's why we want to.
We've heard things back andforth that some people have said
as soon as you get thediagnosis you're eligible for
hospice and from what I'mreading, it says the sooner we
get hospice involved, the betterit is for hospice and us it is.
Speaker 4 (17:45):
However, if you're going under the primary
diagnosis, okay.
Now, hospice can get aroundprimary diagnosis, sometimes by
putting them under a generalizedthing.
But when we do that, you losethe ability for hospice to pay
for your Lewy Body Meds.
Okay, so you want to fall underthe and you come under,
(18:10):
unfortunately, the big umbrellaof Alzheimer's.
You just do.
And so for a Lewy body patientto be eligible for hospice, they
have to meet on the FAST scale,which is a.
It's called the ReisbergFunctional Assessment Staging
(18:32):
Scale and that's, if you want tolook it up, r-e-i-s-b-e-r-g
Functional Assessment StagingScale.
It's been used for years, guys,to kind of fit that mode, and
it's a 16-item design toparallel the progress for
depressive movement of a disease.
(18:55):
The problem lies for Lewy bodiesin the fact that they have to
meet the criteria under this.
They have to be equal to orgreater than stage seven, and
I'm going to tell you what stageseven involves in stage 7.
And I'm going to tell you whatstage 7 involves.
So stage 7 is loss of speech,locomotion or consciousness.
(19:21):
Stage 7A is the ability tospeak is limited for up to 5
words.
Stage 7B, they have to have allintellectual vocabulary lost.
So you can see where we'regoing.
You're really far down on thisthing.
They have to be non-ambulatory,unable to sit up independently,
(19:44):
unable to smile, unable to holdtheir head up.
Documentation has to prove someof that.
However, they can meet the restof that scale, which is easier
because they're going to combine, because it has to become
greater than 2 or equal to 7.
(20:05):
So it could just be complaintsof forgetting locations of
objects.
It could be okay.
They've got two.
Now let's say stage three Dothey have decreased job
functioning difficulty travelingfrom one situation or location
to another?
Stage four do they havedecreased ability to perform
(20:29):
complex tasks?
Decreased ability to dressthemselves, bathe themselves,
put their clothes on properly,toilet independently, unable to
bathe properly or maybe they'vedeveloped that fear of bathing
that happens.
Or inability to handle themechanics of toileting, like
(20:52):
they forget to flush or theyforget to sometimes wipe
properly.
Incontinence, both fecal orurinary, loss of speech.
So they can be combined.
They can be some of these andsome of these.
So what I tell people is don'tbe discouraged by this, okay.
So what I tell people is don'tbe discouraged by this, okay,
because they're also going tolook at what is this client's
(21:17):
comorbidity?
Do they have heart disease.
Oftentimes you do have a lot ofcardiovascular problems.
Blood pressure issues Do theyhave?
Maybe they have diabetes, Maybethey have some pressure stores.
So there's lots of ways to addthese up.
Speaker 3 (21:37):
Carrie, are you adding these up in your head?
I am One of the people postedon her Facebook page that she
was holding back tears from whatBonnie went through.
But she was laughing because Iwas giving Carrie a talking to,
(22:01):
because I'm like you need to getyour wife to call.
Speaker 4 (22:05):
Well, here's the thing.
Here's the lovely thing.
I know you're going to come tothis question.
I know you're going to come tothis question.
This is really a nice time toreassure all of your members
that you don't need to wait fora physician because a
physician's not going to come in.
Most of them not mostphysicians are not going to walk
in your room and say it's time,it's time to get, you know, get
(22:27):
hospice involved.
They're not going to do that.
Most physicians areuncomfortable talking about that
phase and in 20 years, trust me, I can tell you this you don't
need your physician.
You can call the hospice youwant to.
You can ask them to come out tocome do an evaluation.
(22:50):
They'll get a doctor's orderfor the evaluation.
They'll come out and make theassessment because they're the
ones that are determining canthey meet the criteria?
You know can they meet it, andso, or you call your doctor and
say I'd like to have just ahospice evaluation to see where
we're at.
It's a free evaluation.
Speaker 3 (23:13):
Yeah.
So if somebody a girlfriend ofmine in California called an
agency, I think it was through ahospital and they came out and
evaluated her husband and I justmet him a couple weeks ago and
I immediately said you need toget hospice in here.
But because he could walk, walk, they said he wasn't eligible.
(23:33):
And I'm like what because?
And so we said to her you needto start calling other agencies.
Like move away from thehospital and, like you said,
call other agencies.
Speaker 4 (23:46):
Yeah ask your friends get a referral.
Ask your church members, um,people you trust you know that's
how you get a referral.
Ask your church members, peopleyou trust you know that's how
you get a good referral.
And but you know, yes, theywould like them not to be
completely walking independently.
You know because then youreally because with hospice you
(24:07):
have to have a diagnosis that'sconsidered life-threatening or
six months or less.
Now at the end of that sixmonths they're reevaluated.
But we've put in a lot ofpatients with hospice that we
could see, because there's lotsof things that affect any client
(24:31):
with Alzheimer's, any kind ofform of that.
It could be blue bodies.
Anytime there's an infection,it almost accelerates things for
a little while and then theyplateau.
I'm sure you all have seen that.
So if they've had any diagnosisand been treated for an
infection a pulmonary infectionthat was bacterial, due to some
(24:53):
slight aspiration, they didn'tmaybe know.
They know urinary tractinfections.
Those are added to this abilityto stage them and get them in.
Speaker 3 (25:04):
Now, sorry, I'm going to go back to my friend because
I was really angry when shetold me that hospice says they
couldn't help her.
So if I get her this list, thisassessment list, yeah, she can
get that right off the internet.
Yeah, I'm going to post it as alink.
What I'm hearing is print thatout and you go through and you
highlight the ones that yourloved one meets, meets, and then
(25:28):
say but just because he,because, just because he's
walking, he, some people atlouis body become not able to
walk.
And then there's some that justfollow their loved ones around,
like like you know, like likelike right there all the time.
So we're trying to get louisbody out from underneath the
(25:50):
alzheimer's umbrella becauseit's.
Speaker 4 (25:52):
It really needs to be removed.
Speaker 3 (25:54):
Yeah, yeah.
That's why we're doing this.
Podcast is like scream at therooftops because it's not it.
You can't put it on there.
Speaker 2 (26:02):
Totally different.
Speaker 3 (26:03):
Just yeah.
So if you're listening, printout that list and we'll we'll
put it on the Facebook pages too.
And I just and we'll put it onthe Facebook pages too.
And we always tell everybodyyou got to be prepared, because
I know you know, vandy, thatpeople will Louis body show time
.
You'll go in and, like Curry'sdoing right now, curry always
shows thankfully, curry, thankyou for show timing when we
(26:26):
record and then he crashes.
It's just yeah.
We got to work on getting itout from underneath that
umbrella.
We're appreciative that it'sincluded, but we got to work on
that.
Speaker 2 (26:40):
Vangie, along with that last question, who makes
the determination when or towhat extent hospice is available
?
You know we see our doctorsevery six months or so.
Can a spouse make the call to adoctor and request hospice, or
does it need to be the patient?
Speaker 4 (27:00):
No, no, it can always be the family member.
No, the spouse can, thedaughter can anybody, if the
patient is in agreement, becausethis is their end of life and
this is their story, so it'sfamily-centered.
(27:21):
But yes, they can call and sayyou know, I would just like to
have a hospice eval.
Would you refer us?
I don't understand anythingabout that social worker that
was talked about earlier, but I,you know, I would think she
could get an eval a lot sooner,just by start moving those
(27:43):
wheels herself.
But yeah, anybody can talk toyour doctor.
He can refer.
He's probably been using sometypes of hospice.
Tell him be your advocate.
Say I would like we might notmeet criteria, but I would like
him to come and make anassessment.
(28:05):
So I know where we're at andyou definitely can do that.
Your doctor can order it.
You could call hospice yourself, ask to speak to whoever's in
charge of the intakes and askthem could you get a doctor's
(28:25):
order to come, because they havea medical director that can
give that order.
It doesn't have to be yourprimary doctor.
I have a medical director thatcan give that order.
It doesn't have to be yourprimary doctor.
Speaker 3 (28:40):
So definitely, you can get an order for lots of
ways.
Hear that, curry.
Yes, sorry, I'm not picking onyou.
I am not picking on you, I am.
Yeah, you are.
I am, yeah, you are I know, butI'm doing it because again
sorry the teacher in me what I'mhearing Vandy tell us all is
even getting it before you thinkyou qualify.
(29:02):
So at least you've beenevaluated.
So when then you take that nextdecline, they can come out and
compare.
Is that right, exactly?
Speaker 4 (29:10):
Yes, because decline is where it's at.
Speaker 2 (29:17):
You hear?
Speaker 3 (29:18):
that, curry, I heard that.
I'm sorry, it was that onFacebook that was cheering me on
for picking on you.
Yeah, I remember that.
I do it with love.
You know that because you canshow her your elbow after we're
done this.
Yeah, yeah, because he's havingissues with um bed sores bed
sores on his elbows.
(29:38):
That's one of the checks I wasdoing.
Speaker 4 (29:41):
I should have been yes, and that's one of the
checks that gets him.
I don't know where curry lives,but gets him immediately for
palliative care, which is paidfor under the same umbrella.
Yeah, so even if they sayyou're not ready for hospice,
say well, I need some help.
So you either got to send inhome health or you got to send
in palliative care.
Speaker 2 (30:02):
Yeah, I've been having trouble with them the
last couple of years.
Speaker 3 (30:06):
Everyone listening.
You all know how much I loveCurry.
Yeah, I think you should dothis and if you're listening,
you have Lewy body.
Do it for your loved ones.
More so if you even if youdon't think you need it cause I
know, curry, we we've asked youin the zoom groups, like who's
taking care of your, your sores?
(30:26):
And you're like, oh, linda doesall that.
But that would relieve her fromhaving to do that and they
would have medical people thereto make sure if it's not healing
by so many days, they could dosomething else yes, and that,
and even home health can do that, and it's going to be paid for
by medicare too.
Speaker 4 (30:43):
they'll send to ari, and on a regular basis, to do
wound care and to measure it andto make sure it's healing and
if not, then they're going tolook at, um, maybe a wound
center which can be taken careof too, so under palliative care
.
That's what it's about.
Speaker 3 (30:59):
Any symptom management, any physical therapy
, any social work that you need,anything so they could
basically, like in Curry's case,help him heal that wound and
then help him do whatever heneeds to do to try to avoid,
because they come back every nowand then right curry, yeah,
(31:20):
yeah, yeah, um, it's an ongoingproblem yeah, yeah.
So, um, yeah, I think you, yourwife is amazing, she's been
doing an amazing job.
But you know, it's what I'mhearing is.
Speaker 4 (31:37):
It would give her some.
I always tell people there'snot a caregiver I haven't met,
that is not an angel and anexcellent nurse.
They make excellent nurses.
All family members can, as allfamily members can, but it takes
(31:59):
a burden off them to have thatextra eyes on and to be able to
say they're doing it right andto help them, to teach them.
So sometimes we have to look atour caregivers and say they
need the help.
I might not need it, but theydo and that's a good thing.
Speaker 3 (32:15):
Yeah, yeah, that's good and I think you answered.
At what point in the Louisjourney is it appropriate to
contact hospice?
Now, I'm assuming.
Well, the normal progressionwith this disease, as I'm sure
you know, is with my husband.
He was diagnosed with mildcognitive impairment in the very
(32:36):
, very beginning, like sevenyears ago, and then that changed
to Alzheimer's and then itchanged to Lewy.
So what point in the journey isit appropriate?
Is it too soon?
When you're well, I don't wantto say when you're first
diagnosed, because some peopleget diagnosed and they're well
into it.
Speaker 4 (32:53):
Well, you know exactly.
You know that each Lewy bodyclient or patient is different,
and some decline very rapidlyand some not so rapidly.
Some live past the expectations, some don't even get a year.
And so when it's appropriate iswhen you see them declining to
(33:19):
the point and this is what Iwould tell everybody when we
have weight loss, when we arestarting to see maybe behavioral
changes, maybe some aggression,maybe some more agitation, more
restlessness, when we see themsleeping more all the time, when
(33:39):
we see them falling, or all ofa sudden we're having
incontinence and we're afraid ofthe shower, that's the time,
that's the time to say you knowwhat?
I just need some eyes on andlet someone decide where we're
at, and definitely if we'reseeing any infection, because
(34:04):
they're going to rear their uglyheads and it might be
infections and wounds or itmight be it's generally urinary
tract or pulmonary, but becauseof the potential for silent
aspiration.
But I would have no hesitationif in fact, I have a.
(34:27):
I don't know if everybody knowsthat, but I didn't mention it
but I've had two brother-in-lawswith Lewy bodies.
One is already moved on, hisjourney's been finished, and the
other one is very active inthis group.
But I would say that evenpalliative care at this point
(34:49):
would be an excellent option forhim.
But just getting the referraland finding out, that's the
thing.
And if you have othercomorbidities, not just Lewy
bodies, if you havecardiovascular disease or maybe
you have COPD or maybe you havechronic urinary tract infections
(35:11):
or maybe you have diabetes,those comorbidities make you at
a bigger risk for decline, andso you fit quicker sometimes
into the um, into that criteriathat you met, because there is
because there's no doctor onearth first.
(35:32):
First of all, that is God, andso whether a patient lives past
that six months or not is notthe situation.
Why you want to get hooked upin hospice sooner is because you
want to build a rapport and atrust and a relationship with
your team.
Each person gets their team.
(35:52):
They get to know you, you getto know them, you get to be able
to trust them and become morehonest and forthright with them,
and so the sooner that happensthe better.
We don't do anybody any goodwith hospice when we come in in
those last couple of daysbecause the dying process
started about three or fourweeks before.
(36:13):
Maybe we didn't see it, maybewe were too.
You know, sometimes ourcaregivers don't see it and
hospitals would come in and sayoh, there's been a big change,
and they're like what, what?
But they do.
They see it because they're notthere every day, and so the
sooner that you can get it thenthe better that is and you don't
(36:33):
have to worry about thatsix-month thing.
I know that question is comingup too.
Speaker 3 (36:36):
Yeah, yeah, and denial is a thing, caregivers,
it's a denial thing.
Speaker 4 (36:42):
Well, it's with every illness.
Speaker 2 (36:44):
Yes, vangie, I think you pretty much covered this,
but you might just touch on itagain.
How do we choose a hospice?
You know there's several in myarea, and how would I go about
choosing the right one orchoosing any of them?
Speaker 4 (37:04):
And I think that's one of the best questions
because that's overwhelming andespecially overwhelming for a
caregiver.
You know and I would tell youseveral you have several options
.
You can always go to your statesite.
You can go under hospice andpalliative care of the state of
Missouri and they will give youa list of them in your area.
(37:24):
Then you could start reviewingthem with some questions.
You're going to want to askthese.
You know some questions and Ihave these questions set up for
you so you can also go to yourstate Department of Health and
you can call them and you couldask them who.
(37:49):
You could ask them to reviewthe surveys, okay, so you could
find out who had deterrent, whohad things they needed to clean
up.
You could also just your doctor, your doctor's nurse.
They're using them in that area, they know them.
There's because there's hospicesand hospitals.
(38:10):
There's private, for-profithospices.
There's not-for-profit hospices.
There are hospices just in thenursing home.
Some nursing homes have theirown hospice units and companies.
So I would check with my doctorfirst.
I would make sure that thehospice again, I said this but
(38:31):
this is so important to mebecause there are guys all
hospices are not equal andunfortunately there are bad
for-profits, there's badnot-for-profits.
You know what I'm saying.
There's good and there's bad.
You want the very best for yourloved one, so check with your
doctor.
So check with your doctor.
(38:52):
And then the questions I wouldwant to know from these people
when I'm talking to them are youMedicare and Medicaid approved?
Because that tells me, eyes arecoming into that building
unannounced and they are readingcharts and they are making
visits out in the field and theyare monitoring.
(39:13):
Number two does the hospicecompany provide equipment?
Do they provide nurse aid?
Do they provide counseling,brief support and registered
nurses to make those visits?
Be specific about that, becausewhen they say, oh yes, there is
(39:35):
a nurse and don't get wrong, Ihave nothing wrong with LPNs.
They can make those visits.
But it is against the law inalmost every state in this
nation for an LPN to change amed order, you know, without
supervision.
And so you want to make surethat it's RNs that are coming in
(39:57):
, if you can, on a regular basis, or that are overlooking the
plan of care at least, and thatyou're seeing an RN on a regular
basis.
Then how long have they been inbusiness?
You know, have they been inbusiness a long time and that
says a lot.
We have a hospice in SoutheastMissouri that's been in business
for over 40 years and they weredoing hospice before hospice
(40:20):
was called hospice, so it says alot about them.
So are the services medication,equipment what are?
What are they going to provide?
You want to know that they'reproviding their medications.
You want to know that they'reproviding equipment, all of
(40:41):
those things.
Are they available 24 hours aday?
Now, this is one of thosemisconceptions.
People think that hospice cancome in and provide care around
the clock.
That's not what hospice does.
The goal of hospice is toeducate the caregiver in the
care.
But when we say 24-7, thatmeans do you have a direct
(41:06):
person I'm going to talk to onthe phone, and how long will
they take?
Where is your nearest facilityin regards to you?
You want to know how long wouldit take for that nurse to get to
your house in an emergency orin the middle of the night?
You need to know that If theirnurse is 100 miles away from you
(41:32):
, 100 miles in the middle of thenight when you have an issue is
too much.
So you also want to know whoanswers that phone.
Is it an answering service.
Are you talking to a nurse?
Now?
Most companies nowadays aregoing to have an answering
(41:55):
service, so that's not the issue.
What's an issue is how long willit take before they return your
call, how long before the nursewill take to call you after
you've called in.
So you want to know that.
Do they provide inpatient unitcare?
(42:15):
Now, under Medicare guidelines,an agency needs to be able to
provide you respite care, whichmeans the family members have
one week a month that hospicetakes and puts them in an
inpatient unit or a nursing home, that they're over to give you
that break, and it is paid forby hospice.
(42:37):
Also, if, let's say, yourhusband had a symptom that could
not be gotten, could not bebrought under control at home
we've tried, we need to put himin inpatient.
Do they have that?
Or are they going to say youneed to get out of hospice and
you don't want them?
Okay, they need to be able toput them in, cover that charge
(43:03):
and then get them back home assoon as possible, as soon as
that symptom is under control.
Speaker 2 (43:07):
Would that be like a chronic UTI or something?
Speaker 4 (43:10):
It could be like, let's say, we have a pain
management problem and the painneeds to be converted from,
let's say, pills to maybe IV ormaybe a liquid form, and it's
going to take more than can bedone at home in a short period
(43:32):
of time.
The goal is never to have thepatient in a lot of pain.
So, yes, lots of times you putthem in, you get that pain under
control whether it's even maybeconverting over to patches or
whatever and then bring themback home.
So that's what that looks like,for sure.
And then do they have thatrespite care?
(43:57):
Do they provide volunteers?
You want volunteers, and allhospices that are Medicare
certified have to providehospice volunteers that have
been trained.
So what do volunteers do?
Well, it's kind of endless.
They can run errands, they cancome sit so the caregiver gets a
(44:19):
break and can go do what theyneed to do.
They can actually even docertain aspects of care.
So we want to know that theyhave those volunteers and
they're available to you andthat one is assigned to you
within that first two weeks ofcare.
Okay, what is your briefcounseling?
(44:41):
What kind of grief counselingdo they provide?
What kind of counseling do theyprovide?
What kind of social workers dothey provide?
Are they a bachelor's associate, or are they masters, or what
do they have to have?
So we want to know that.
(45:02):
We also want to know do theyhave a chaplain on board?
Because they need to providechaplain services.
Now a patient can decline thatservice, but they need to also
be able to provide it to thespouse if they want.
So those are the questions Iwould have for any hospice.
Speaker 3 (45:24):
Well, I'm going to be asking you if you can send
those to me so I can just listenback.
It's up to you.
So we're going to stop here fora bit, because we've been
talking for a while.
We try not to let the episodesgo too long, but you know
there's going to be a part twoon this, so we're going to pick
up next week with Vandy as weask her what specific services
(45:47):
there are.
So hang tight, we'll be backnext week.
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