July 31, 2024 • 36 mins
A Departure from the Norm: A Caregiver's Story
Typically, we bring you expert insights from the elder care industry on Advice From Your Advocates. But today, we're taking a different approach. Join us as we delve into the heart of the caregiving experience with Sarah Cart, author of “On My Way Back to You.”
In this conversation with Attorney Bob Mannor, Sarah shares her raw and honest journey of caring for her husband, Ben, through a severe autoimmune disease culminating in a heart transplant. From navigating the complexities of the healthcare system during a pandemic to the overwhelming challenges of daily care, Sarah's story is a testament to the strength and resilience of caregivers.
Discover practical tips, emotional coping mechanisms, and the vital role of community in overcoming caregiving challenges. We'll explore the importance of self-care, the complexities of home healthcare, and the broader impact of organ donation.
Whether you're a seasoned caregiver or a healthcare professional, this episode offers invaluable insights and a fresh perspective on the realities of caregiving.
Learn more about Sarah's book: HERE
Learn more about Mannor Law Group: HERE
Host: Attorney Bob Mannor
Guest: Sarah Cart, Author of "On My Way Back to You"
Executive Producer: Savannah Meksto
Listening Options
YouTube Playlist
Apple Podcasts
Spotify
Amazon Music
iHeart Radio
Podcast Addict
Podchaser
Deezer
Listen Notes
Player FM
ABOUT US:
Mannor Law Group helps clients in all matters of estate planning and elder law including special needs planning, veterans’ benefits, Medicaid planning, estate administration, and more. We offer guidance through all stages of life.
We also help families dealing with dementia, Alzheimer’s disease, Parkinson’s disease, and other illnesses that cause memory loss. We take a comprehensive, holistic approach, called Life Care Planning. LEARN MORE...
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
You're listening to.
Advice from your.
Speaker 2 (00:02):
Advocates, a show where we provide elder law
advice to professionals who workwith the elderly and their
families.
Welcome back to Advice fromyour Advocates.
I'm Bob Manor.
I'm a certified elder lawattorney in Michigan and we have
a practice where we focus onhelping folks that have chronic
illness and particularly thingslike dementia and similar
(00:24):
illnesses, and today we're goingto take a little bit of a
different approach for thepodcast.
Today we're going to talk tosomeone about their personal
experience.
So Sarah Cart is with us.
She's written an excellent bookcalled On my Way Back to you.
We're going to talk about herpersonal experience, and I think
this is really valuable for ourcommunity to talk about our
(00:46):
experiences, and so I know oftenwe're going to have a physician
or we might have a nurse orsocial worker talking about
specific details, but today Ithink it is important to talk
about our own journey, andeverybody's journey is going to
be different, right, everybody'sfamily situation is going to be
different, but I think we canget a lot of hope and help by
(01:07):
discussing our own journey.
So, sarah, welcome.
Speaker 1 (01:10):
Thank you, Bob.
I'm honored to be here.
Speaker 2 (01:12):
Thank you very much for asking so talk to us a
little bit, Sarah, about yourlife and your journey here, and
you know what your experiencewas.
Obviously, COVID has been frontand center on all of this and
all of the shutdown and tryingto deal with the healthcare
industry, and COVID was a horrorstory at times.
So tell us a little bit aboutwhat you've gone through and
(01:34):
what your journey's been.
Speaker 1 (01:35):
My journey began when my husband, ben, was diagnosed
with an autoimmune issue back inthe winter of 2016, 2017.
And the caregiving learningcurve at the start was pretty,
not very steep.
One step at a time, we weretold that his issues would be
(01:56):
handled symptom by symptom andwe were doing a great job with
that until, fairly suddenly, weweren't with that.
Until um, fairly suddenly, weweren't it.
Uh, the disease migrated fromhis um gi tract to his joints
and his tendons and eventuallygot to his heart and by the
summer of 2018 he needed apacemaker.
(02:18):
And by the summer of 2019 itwas obvious that his only hope
for survival would be a hearttransplant.
And in the meantime, he and Iwere preparing for me to be on
my own because we pretty muchknew he had a death sentence.
So we came into COVID, trying toget him onto the heart
transplant list, and that's anarduous process and he was just
(02:44):
getting sicker and sicker.
Two weeks after the pandemicwas declared, his kidneys shut
down and he ended up in thehospital.
He wasn't yet on the transplantlist.
Because of hospital protocolsto do with COVID, I was not
allowed to visit him.
In the midst of all of that,they finally got him on the list
.
Then he was off the listbecause he was too unstable.
(03:07):
Then they put him back on thelist and they were about to take
him off the list again when aheart was allocated.
So the surgeon said on the wayinto the OR this is 50% of the
battle.
The other 50% will be recovery.
And what we didn't know until aweek later was that Ben also
had a broken hip.
Speaker 2 (03:28):
Oh, my goodness.
Speaker 1 (03:29):
So when he finally came home to me 10 weeks after
going into the hospital, he camehome with a new heart, in a
wheelchair because they couldn'tdo the hip until he was strong
enough for that and he wasindependent, not looking for
game relief.
So so my, my caregiving journeyat that point went from zero to
(03:50):
a hundred miles per hourOvernight.
Speaker 2 (03:53):
In our experience.
A lot of our clients tell usthat working through the
hospital and and rehab and homecare and all of that, it almost
seems like a maze at times.
We talk about that Children'sgame, shoots and Ladders.
I remember playing that with mykids and you get all the way
through the game.
It seems like you're makinggreat progress and all of a
(04:13):
sudden you slide back down tothe beginning.
And that's been our clientexperience in dealing with this
and it's just the nature of thebeast kind of a thing that when
trying to work through thehealthcare industry there's so
many moving parts.
We have to deal with thetransitions between the hospital
and rehab and, whatever thenext step is, we have to deal
with the medical cutbacks and itsounds like that your husband
(04:35):
had quite a few of those.
Talk to us about that, yourexperience first, of trying to
just cut through the clutter andcut through all of the multiple
sources of information.
Speaker 1 (04:47):
Our situation was unique to us in that it was the
midst of COVID so I couldn'tvisit him and we were dependent
on all the nurses and doctorsfacilitating our community
patients with each other, andalso all of my advocating on his
behalf was via phone or Zoomcall, but it certainly wasn't
(05:08):
unique to anyone going throughhospital stuff in the spring of
2020.
We were just one of hundreds ofthousands of couples healing.
What kind of families doingthat?
So the COVID complication Idon't know how many of our
issues were COVID related andhow many of them will just the
(05:30):
red tape that is out there, butthere were certainly many times
when one step forward wasfollowed by two or three or
eight steps back.
We were blessed to have goodinsurance and that was never
really an issue for us.
The issues that drove me nutsand made me lose sleep at night
(05:50):
were after he came home andtrying to get the home care
support to work.
As I said, he was in awheelchair, he was on opioids,
he had a massive bed sore, whichwas the other hurdle we needed
to get over before they couldfix his hip, and my kids say
(06:11):
this is going to be on mytombstone.
I'm just an English major, butfor me to have to deal with that
bed sore.
I was in over my head, and thatwas not the only wound he had.
He still had a wound from histrach.
He had places where they, wherethey'd done catheters up to his
heart through his groin.
So, like I mean there would.
There were all kinds of thingsthat needed to be addressed, and
(06:34):
the home health care agenciesthat were supposed to be helping
us were very interested in our,our good insurance and not
necessarily very interested inactually showing up and doing
the work.
One health care aide who justsaid to me oh, that part where
they tell you that dressingneeds to be changed every day,
(06:57):
that's not really true.
You go for three or four days.
Oh boy, he's a heart transplantpatient and it's COVID and I
have an English major, so I'm intotal panic.
Anyway, the people who camethrough for us finally were the
third agency that sent a nursewho came out on a regular basis.
(07:20):
By the time she was showing up,4th of July was approaching and
so she was going to haveseveral days off because of the
holiday.
And when she first said that,she could see on my face that I
was in shock.
I was frustrated.
I was.
You're the first person I canrely on and now and now you're
telling me you're not going tobe here.
(07:41):
And she was wonderful aboutsaying I'm not going to be here,
and she was wonderful aboutsaying I'm not going to be here,
but I'm going to show you whatyou need to know to get through
the next five days.
And she finally stopped andeducated me.
Nobody else had taken the timeto educate me, they've just been
giving me excuses on.
If you live in the Florida Keys, you'll fall away and it's
difficult to get there and it'sCOVID, so we don't have the bus,
(08:02):
you know, and she was love herfull.
Speaker 2 (08:18):
Don't know how we would have been better served if
it hadn't been a pandemic, butI think people will continue to
struggle with these types ofissues even after the pandemic,
even today.
Speaker 1 (08:32):
We're in 2024 now, and the book is about how Ben's
health declined precipitously,how he nearly died and how he in
fact saw his way back to you,but I don't think it gives
(09:00):
anything away to reveal thatwithin three weeks of his coming
home, somebody filed a reportwith the State Department of
Children and Family Servicesregarding elder abuse.
The state's laws are that thatneeds to be investigated within
24 hours.
So this lovely young womanshows up at our house and she
called ahead of time.
She told me where she was from,she told me that she needed to
come talk to Ben, and Ben wasthrilled.
(09:24):
Ben was recovering, but he didnot have all of his executive
function yet.
And he was just delighted tohave this lovely young woman
come sit and chat with him abouthow he'd had a heart transplant
and how his hip was broken andwhat needed to happen next.
And I needed to stay in theroom because Ben is hard of
(09:45):
hearing it's COVID, so we'rewearing masks so he can't even
read her lips.
And so when she said I'd liketo talk with you alone to Ben,
he said Sarah needs to stay.
She's my translator.
But really all I was allowed todo was take off my mask and
repeat her questions so that hecould understand that she was
(10:06):
asking.
Speaker 2 (10:07):
Right.
Speaker 1 (10:07):
And not until after she left did he realize.
And she had him sign a bunch ofpaperwork and had left copies
of that with him.
So I took her and as for her togo back to the fort.
When I got back to where he wassitting in his wheelchair and
reading through these papers, hesaid this looks like we need a
meter.
(10:27):
What's going on here?
And I said you know, dependingon what she says in her report,
they could remove me from ourhome or they could remove you
from our home.
We don't know.
We were totally cluelessthrough that full process.
We did get in touch with alawyer that night and he was
(10:48):
wonderfully reassuring aboutthis.
Is the way the state law worksand you are probably not false
of this investigation.
It's probably on your thirdagency and you less than a week,
but we never we never heard anykind of resolution about it.
The state agency called us acouple times to see how you were
doing, but they never said thefaces and it was all of this
(11:10):
stuff happened.
Speaker 2 (11:12):
I agree with you on this as far as in Michigan we
call it Adult ProtectiveServices.
Even I get a little nervous whenI hear that Adult Protective
Services is coming in orinvestigating in a matter that
we're working on, and I can'timagine what the families have
to feel about it.
What's interesting about it isthere are times where I find
that adult protective servicescan cause certainly a lot of
(11:34):
anxiety, but sometimes it cancause issues with moving matters
forward.
A lot of financial support andthey're able, you know, to
initiate some court processesthat they really couldn't afford
(11:56):
to do on their own, and nowAdult Protective Services is
taking on that burden.
There's some situations whereAdult Protective Services can
help us get to the head of theline for caregivers.
There's a program in Michigancalled WAVER.
It's a home care programthrough Medicaid.
There's a waiting list, and sothrough Adult Protection
Services, sometimes they canhelp us get to a higher spot on
(12:17):
the waiting list so that folkscan get the care in their home
that they need.
I think that's what I'm hearingfrom you is one of the real
important things to you whereyou were able to care for your
husband in your home and that hedidn't have to go and live in a
nursing home.
Speaker 1 (12:32):
We were very fortunate on that score and I do
appreciate that the agency wasdoing its job and that there
could have been a time when weneeded them to be advocating on
our behalf.
What was scary for us was thereport of elder abuse and not
knowing where that had come fromand the sort of paranoia of
(12:55):
who's watching us and who'ssaying something, Because we
were both doing our best.
I mean, it was just achallenging moment at a time
when I already felt challenged.
I was suddenly responsible for20 prescriptions and three hot
meals a day.
I mean, Ben had come home fromthe hospital where he had 24-7
(13:19):
undivided attention of all kindsof medical personnel and
janitorial staff andnutritionists and because of
COVID he came home to just me onmy own trying to manage all
those things.
So the abuse filing was out ofthe left field and really,
really disconcerting at a timewhen I was already disconcerted.
Speaker 2 (13:40):
Well, that brings up a really important issue and
you've addressed this in yourbook but the issue of making
sure we're taking care of thecaregiver too, of making sure
we're taking care of thecaregiver too.
So I'm sure you've heard thisthat often the statistic is that
the caregiver spouse often diesfirst, and I know you guys were
younger, but that is a verycommon statistic that a
caregiver spouse all of a suddenis thrown into this, and you
(14:03):
described it very well.
In just a short period of time,you went from having to manage
all of this, plus the anxiety ofthe investigation and just the
stress of everything.
You talked about losing sleep.
I work with clients on us to say, okay, I know we're here to
talk about the husband, but weneed to make sure that the wife,
whoever the caregiver spouse is, that we're taking care of them
(14:25):
, we're giving them propersupport, we're giving them some
respite, some time to time away,some time to regroup and, you
know, taking some of the burdenoff, because what you described
is exactly right you go fromthree shifts of people multiple
people taking care of somebodyto going home and, for the most
part, you're a 24 hour caregiver.
You're taking a place of threeshifts of multiple people and
(14:47):
you know how to do all of that,and it's incredibly challenging.
Speaker 1 (14:50):
So talk to us a little bit about your experience
and and maybe how to make surethat you're taking care of
yourself too the hospital andrehab were both very good about
calling me and putting methrough um zoom call training
sessions on this is like I.
I probably I don't know howmany different sets of personnel
(15:12):
I talked with physicaltherapists, nutritionists,
doctors.
The nurses when Ben wasdischarged from the hospital to
rehab actually made a point ofcalling me and at that point
they didn't have to.
I didn't need to hear fromanybody until he was discharged
from rehab.
The nurses made a point ofcalling me and saying your
husband talks about snakes andreptiles a lot and he needs to
(15:34):
not touch any for at least ayear.
So that's the kind of attentionthat some people were offering
me and I deeply appreciate allof that.
But the reality it's one thingto go through a Zoom call and
have a nutritionist list all thefoods he's supposed to have, or
the pharmacist tell you whichmeds he's supposed to have when
(15:56):
and it's another thing to besitting there looking at all the
piles of pills or looking atthe empty meal tray and thinking
, okay, what am I going to puton there?
Now, I'm a list person, sothere were lots of lists, there
were lots of checklists, andthat was very helpful.
I journal when I'm panicking,so I did a lot of journaling,
(16:16):
trying to make the times journal.
Someone had suggested to mesince Ben had to be in a
different room than I was in wecouldn't be roommates while he
needed a hospital bed and acommode by the side of the bed
and all those kinds of things.
Someone had suggested to me ababy monitor, which was an
awesome idea.
He had the main unit by him andI had one by my side of the bed
(16:41):
and one in the kitchen and oneby my desk, so that all he'd
have to do was kind of whisperlike I need your help, so that
all he'd have to do kind ofwhisper like I need your help
and and I could get to him um,without him having to go to the
stress of calling for me oryelling for me meditating I did
some meditating.
I'm, my family and friends arelike really you.
(17:04):
You took the time to meditate.
I I guess that's maybe just asign of how stressed I was that
I was making myself take thetime to do that.
That was very helpful, and I'malso someone who needs to walk,
not because I want my 10,000steps a day, but because I get
antsy and if I don't move orswim I go a little nuts.
(17:28):
So those were my forms ofhealthcare.
I was also very fortunate andmaybe this was because of COVID,
and everybody was sheltering inplace and had their special
COVID pods and balls.
But people were wonderful aboutreaching out via phone, via
(17:50):
text, via email or taking youfor walks where we're standing
10 feet apart.
We were a subject of a lot ofpeople's attention and that was
a huge blessing.
I'd go for a walk and I'd comehome and there would be a bag of
bagels on my front doorstep ora bouquet of flowers.
Or one time I walked in andthere was a meal on my dinner
(18:12):
table.
Someone knew that I had beenaway on a walk and had come in
and left a hot meal for me, so Iwas very fortunate that way.
Speaker 2 (18:23):
Very nice.
Speaker 1 (18:24):
The support system is important.
Speaker 2 (18:27):
Let's talk a little bit more about your book.
It's a really engaging book onmy way back to you.
So what inspired you to write abook about your experience?
Speaker 1 (18:37):
Well, I've said that I journal and, after all was
said and done, there was a lotthat I needed to process about
Ben's experience, about ourexperience.
Ben calls it my book, my story,I call it his book.
It's his going on the hero'sjourney.
He started out great.
(18:58):
He got really sick, he had toleave home, he had to endure a
lot of adventures while he wasgone, and then he returns home a
changed person, with a lot moreadjusting still to come.
But I needed to process thingslike having missed the fact that
his hip was broken when he lefthome as his kidneys were
(19:19):
failing, and that was.
It wasn't an oversight, it wasthat we were overwhelmed by how
sick he was.
He had so much going on.
I did notice a couple of daysbefore his kidneys failed that
he was popping ibuprofen like itwas jelly beans and I asked
what was going on and heconfessed that he had fallen
(19:42):
asleep on his way back from thecommode to the couch at two in
the morning and gone over like atree in the living room.
He was sleeping on the couchbecause he was sleeping so
restlessly at that point that hedidn't want to fall out of bed.
Three feet from the bed to thefloor, but 18 inches from the
couch to the floor made a littlebit more sense to him.
(20:03):
So here I am, his caregiver,and I missed that.
He had a broken hip.
He probably never, because ofhis autoimmune issues, we're not
sure that he ever would havebeen accepted as a heart
transplant candidate, but he wasin the hospital and we forget
that at that point of thepandemic you'd drive in your car
(20:27):
to get a COVID test.
Someone would scratch yourbrain with a cotton swab and you
had to then wait for three orfour days before you got your
results.
So the only people who werebeing taken into the OR were
emergency situations caraccident victim, a gunshot wound
situations, a car accidentvictim, a gunshot wound, or in
(20:47):
the case of the transplants,that happened that spring, at
least at the hospital where Benwas, people who were already in
the hospital so sick they weredying.
But the hospital knew they wereCOVID-free and they would take
them into the OR when unworkingbecame available.
So I needed to process that heshouldn't have gotten a
transplant.
He got a transplant.
He also, oh my goodness, neverwould have gotten a transplant
if anybody had known about thebroken hip.
So there was a blessing in ourhaving missed that.
(21:10):
There was a lot to go on andthe part where I had to take
care of him on my own I go backto.
I'm just an English major andthey trusted me with keeping him
alive.
That was my responsibility andthat was an overwhelming thing.
I was lucky enough to be ableto break it down into smaller
(21:30):
pieces and handle it and gethelp when I finally needed it.
But going into it I didn't knowthat was how it was going to
turn out.
Speaker 2 (21:38):
I know your book has gotten a lot of accolades.
I saw the quote from Kathy LeeGifford and that was a wonderful
quote.
I'll summarize it.
It said something to the effectof, after reading that book,
well, she didn't know you, she'dlike to know you, and I thought
that was a very nice quote fromKathy Lee.
Speaker 1 (21:57):
Yeah, I'm hoping to meet her one day.
We'll see.
Speaker 2 (22:00):
And others.
It is a very engaging book.
She and others it's just been.
It is a very engaging book andyou know you've gotten a lot of
really interesting people thathave read it and enjoyed it, and
so I do encourage folks to pickthis up.
It is worth reading.
And one of the things in thebook that you talk about is some
practical advice, and I kind ofwould like to go through that.
(22:23):
So I'm going to, you know,quote some of the or not quote
them, but just kind of gothrough the list, and then I'm
going to ask you to kind ofanswer each of the three things
or each of the four thingsseparately you talk about, in
dealing with all of this andjust trying to cut through this
maze, what questions to ask, youknow, and I thought that was an
excellent way to word that whatquestions to ask, and I thought
(22:43):
that was an excellent way toword that.
Then, what notes to take, sowhat signs that you shouldn't
overlook and making sure thatyou have soft gears.
So let's start back at thatfirst one.
In this situation where you'rehaving all of this input from
all different sources, whatquestions?
Speaker 1 (23:00):
What are the questions that we want to
remember to ask?
You need to ask what they'regoing to be handling and what
you're going to be responsiblefor, and will there be for lack
of a better descriptioncontinuing education Phone
numbers?
How do I reach you in anemergency?
What does an emergency looklike?
When Ben got his PACE name, weneeded to know what a?
(23:22):
I don't know what they call it.
I call it a correction, but ifhis pacemaker was triggered,
what were our responsibilitiesat that point?
So you just, if you don't knowthe answer it's not a stupid
question Ask.
If it's something that's goingto keep you up at night.
(23:44):
Ask, don't.
Don't hesitate to ask thequestions, ask for help those
are excellent questions.
Speaker 2 (23:52):
I want to kind of circle back to that first one of
making sure that you're clearon what are they going to do and
what are they are you expectedto do.
I wanted to circle back tosomething that you talked about
earlier and with insurance andsaying okay, the insurance was
providing some folks to come inand help out and change the
dressing and things like that.
Typically, insurance is goingto provide whether it's Medicare
(24:15):
or, you know, you were tooyoung for Medicare, I believe,
so you were on regular insuranceand so it's going to provide
what we would usually refer toas skilled care, in other words,
a nursing assistant, a nurse, aphysical therapist, things like
that.
Is that, primarily, they didn'tprovide.
Insurance wasn't paying forsomebody to come by for hours a
day to help them get dressed orto help them shower, things like
(24:38):
that.
That was not the type of thingsthat insurance, I'm guessing
based on my experience thatthat's accurate.
Speaker 1 (24:44):
It was, yeah, pt which ended up not being useful.
I mean right from the start.
When it came up for rehab, a PTperson came by a couple of
times and she was wonderful thathe finally said, like with the
broken hip without no guidance,I can make this worse rather
than better the broken hipwithout guidance and I can make
(25:06):
this worse but rather thanbetter.
But he was also great aboutsaying like here's, when you are
able to get in the shower, thisis going to be the best way to
do it, and then just giving usyou were newbies um, giving us
some basic information.
But gait belt I had heard ofgait bounce before and maybe
it's because I write um.
I'd always heard it as g-a-t-eum and when I finally realized
(25:26):
that it was g-a-i-t and it hasto do with how a person walks,
it has to do with their gateyeah, it made a whole lot more
sense to me.
But teaching us how to use agate belt, a home health aid was
supposed to come by to helpwith a shower, again with a
broken hip and not being able tomove around.
We didn't do that.
We were, we were dependent upon, but I think must have been an
supposed to come by to help withthe shower, again with a broken
hip and not being able to movemore around.
We didn't do that.
We were, we were dependent upon,but I think must have been an
(25:48):
lpn license practice to come inand change the dressings and in
an ideal situation that personwould have visited right before
the home health aid.
Then, you know, the home healthaid would have visited right
before the lpn.
So if we'd known when the lPNwas coming, I would have been
able to get him in and have ashower with the help of a home
health aid, and then we wouldhave the licensed practical
(26:10):
nurse to apply the variousmedications and set his
dressings.
Speaker 2 (26:15):
And I think that goes to your point about asking the
question of what's going to becovered in LAT, and I think
that's important for ourlisteners to remember that you
know sometimes you're going tohave to supplement it with other
things, whether it's family,whether it's paid caregivers,
paid out of pocket, things likethat.
But the big question I think isa really important question
(26:36):
that you raised is what are youresponsible for?
You know, whatever thecaregivers are coming in, the
skilled people that are comingin, what is your job?
What are you responsible for?
What are the outer limits?
When are you going to be ableto do your job?
You raised some very goodpoints there.
We can't do physical therapyunder these conditions or
traditional physical therapyunder these conditions to
(26:57):
actually make it worse.
That's a really importantquestion.
That's a really importantquestion.
So I just wanted to highlightthat because I agree with you
Asking the right questions forolder folks and our clients.
Sometimes the families aredealing with a dementia
diagnosis.
One of the things I alwaysencourage our families to ask
more questions like can you giveus an idea of what we think the
(27:20):
specific diagnosis is, ratherthan just sort of generalized
dementia?
And I think that's what you'regoing to.
You want to know as much as youcan and sometimes if you don't
ask the questions you're notgoing to get it.
If you hadn't, you know, if thelook on your face when your
nurse was going on vacationwasn't, you know, a little bit
of panic, you know there mightnot have been that education to
(27:40):
say I'm going to get you throughthis and so those are and
there's a learning curve todealing, to learning.
Speaker 1 (27:45):
Here all the various agencies are.
And I thought that I was justgoing to be dealing with the
rehab facility said we're yourcentral information system.
If you have any problems youcan call us.
But there was also thehealthcare agencies, and then
there was like a middleman orinflated agency that would call
and say we're calling on behalfof your insurance company to
(28:06):
make sure that you're actuallygetting the care that you're
supposed to be getting.
I had no idea who that was orthat such a thing existed.
So there's just more and morepeople called in in their
official capacities and I had noidea who they were or what
their capacities were, or howthat system worked, was
structured, much less how itworked.
Speaker 2 (28:27):
The next one on here is what notes to take, and I
think that was an interestingone.
I hadn't thought of it that way, but you wrote down what notes
to take and I want to inquiremore about that.
Speaker 1 (28:38):
I was taking notes at all of Ben's doctor's
appointments from the beginning,partly because that's how I
manage information.
I hear it better if I write itat the same time and that would
also give us the material weneeded before we go back to the
next appointment to say, okay,here's what you said last time,
(29:01):
here's what's happened since.
How do these things connect?
How do we make progress on this?
One of Ben's earliest doctors inall of this, as I'm taking
notes and I'm writing numbersdown blood numbers and such
stopped and said I can see thatyou are taking this down and I
can tell I can take yours andBen's temperature right here,
(29:24):
right now.
You think that you can improvethat one number?
You can't.
That number is what it is andthat will be that number for the
rest of Ben's life.
So it was an educational partof my taking notes also showed
the doctors that we were payingattention in and that they would
take the opportunity to educateus further about different
(29:45):
things, not just what questionsthey might inspire about
different things, not just whatquestions they might inspire.
It was also important to beable to look back and say here's
when he started this medicationand it was those kinds of
things, or here's when thatsymptom started.
Speaker 2 (29:59):
That can be very important.
It's one of the things I knowfamilies that I work with
struggle sometimes is sometimesfor the legal and sometimes for
the insurance or benefits.
We need to know the progression, we need to know certain dates,
and that's often can be astruggle for families because
they're going through thiswhirlwind of everything that's
going on.
(30:19):
So I agree with you if we can,you know, keep good notes and
especially keep it kind of atimeline of things that that can
help and it can also help youkeep some perspective.
You know, talking abouteverything that had occurred in
the one week time period thatyou were referencing when you
first came home, that can behelpful to kind of have that.
(30:40):
This is the timeline that wedealt with there.
The next one you have is and Ithink this is really interesting
too signs not to overlook.
So I'm curious if you couldtell us more about that.
What are the signs not tooverlook?
Speaker 1 (30:52):
They can be really subtle.
In Ben's case, the first signthat anything was wrong with him
was he had always been able tojust whistle with one hand.
And when we're at a wedding andthey introduce the bride and
groom after the exchanging ofvows and everyone's applauding
what Ben does and Iautomatically my hands go up
(31:14):
over my ears because I know he'sgoing to do it.
He's going to do thisear-splitting whistle and I see
out of the corner of my eye that, instead of just doing it this
way or this way which he neverdid he reaches up like this and
then he holds his fingers closertogether.
And I didn't ask about it atthe time, I asked about it in
the car on the way home and hesaid it's just, my fingers are a
(31:34):
little swollen.
And what do you mean?
Your fingers are swollen?
That's really weird.
Oh no, it's okay, and I said isthere anything else?
Oh well, yeah, they kind ofchange color when I'm cold, or
when I go from cold to heat.
I'm cold, or when I go from coldto heat, and so I ratted him
out a couple of weeks later whenwe went to get our flu shots
and our doctor said you know,gee, Ben didn't mention that,
(31:56):
but I'm not giving him his flushot today.
We're going to do these bloodtests instead.
So we were lucky enough, by myhaving nudged him and ratting
him out, to have his autoimmunediagnosed before what is
typically the initial symptom ofthat particular autoimmune had
(32:18):
even been evidenced.
And so you have to trust yourgut.
I mean.
I'm not saying be paranoid, I'mnot saying go onto the web and
search every little thing, butif something's odd, speak up and
ask about it.
I also.
I would say ask about it ratherthan look it up on the internet
(32:38):
.
Speaker 2 (32:39):
Right, good idea.
And then we talked about thisone, the fourth one, which is
self-care and self-care for thecaregiver spouse.
So anything else you want toadd on that, because I do think
that's incredibly important.
Speaker 1 (32:52):
The statistic that you were citing about caregivers
pre-deceasing their patients.
I've heard that and I've seenit twice in our family my father
pre-deceased my stepmotherwhile he was caring for her, and
Ben's father pre-deceased Ben'smom um, under the same things
and it's.
You need to not forget thatthat you are a human being with
(33:16):
needs.
Don't hesitate to ask for help.
Don't hesitate to uh, forgiveyourself.
You're not going to.
There is a learning curve andum, you're not going to get
things to do with caregivingperfect on the on the first go
round.
You might with caregivingperfect on the first go-round.
You might not get them perfecton the eighth go-round either,
but be forgiving of yourself andof others who reach out to help
(33:37):
and support you.
The sanity aspect of it iscrucial, absolutely.
Speaker 2 (33:46):
Well, sarah, this was a very interesting conversation
.
Thank you so much for writingthe book.
It is available on Amazon, soif you would like to pick it up,
that's one of the ways that youcan find.
It is on Amazon.
Anything else, sarah, thatyou'd like to leave us with for
families that are dealing withthis, or a lot of the listeners
to the podcast are actuallypeople that are, you know, in
(34:06):
the health care industry, sosocial workers and therapists
and things like that listen tothe podcast, are actually people
that are, you know, in thehealth care industry.
So social workers andtherapists and things like that
listen to this podcast.
So anything that you want toleave to either the family,
caregivers or the professionalsthat work in this industry.
Speaker 1 (34:21):
First, to the professionals.
I do have a few friends who aredoctors, who have read it, who
have thanked me for writing itbecause they said you know, you
learn about it in med school.
You're supposed to payattention to the patient and the
families, um, but it's areminder, um, especially one
very good friend of ours, uh,who's been in the or thousands
of times.
He said I forget that it's myjob, but for you it was a
(34:44):
miraculous thing that he cameout of the OR as well as he did,
and the other thing that madeour miracle possible is organ
donation.
If you are considering being anorgan donor, please let your
family know that that'ssomething you feel strongly
about, because for us, a family,in what has to have been their
(35:06):
darkest moments, made a decisionthat made them, that enabled
our miracle and also, I believe,enabled them a miracle for at
least four other familiesbecause of the numbers of organs
that were able to go out, andthe ripple effect from that it's
not just.
It's not just a heart, it's notjust a kidney, it's not just
(35:26):
that one patient, it's thatpatient's family and friends,
it's not just a kidney, it's notjust that one patient, it's
that patient's family andfriends.
It's really really powerful,and we are so grateful to those
people for making that decisionin a really terrible moment,
absolutely.
Speaker 2 (35:45):
Well, thanks again, sarah, and for our listeners,
don't forget to subscribe.
You can listen to this podcaston any place that you can find
podcasts.
Will you find us there?
Or you can go to our website,manorlawgroupcom, and there is a
link to the podcast or, like Isay, any podcast service that
you use.
(36:06):
Don't forget to subscribe sothat you know when the next
interesting topic will come out.
This was very enlightening,sarah.
I appreciate everything thatyou've done to spread the word
and share your story.
Speaker 1 (36:22):
Thank you, Bob.
I was glad to be here and Ireally appreciate your giving me
the time and the forum.
You're listening to.
Advice from your.
Speaker 2 (00:02):
Advocates, a show where we provide elder law
advice to professionals who workwith the elderly and their
families.
Welcome back to Advice fromyour Advocates.
I'm Bob Manor.
I'm a certified elder lawattorney in Michigan and we have
a practice where we focus onhelping folks that have chronic
illness and particularly thingslike dementia and similar
(00:24):
illnesses, and today we're goingto take a little bit of a
different approach for thepodcast.
Today we're going to talk tosomeone about their personal
experience.
So Sarah Cart is with us.
She's written an excellent bookcalled On my Way Back to you.
We're going to talk about herpersonal experience, and I think
this is really valuable for ourcommunity to talk about our
(00:46):
experiences, and so I know oftenwe're going to have a physician
or we might have a nurse orsocial worker talking about
specific details, but today Ithink it is important to talk
about our own journey, andeverybody's journey is going to
be different, right, everybody'sfamily situation is going to be
different, but I think we canget a lot of hope and help by
(01:07):
discussing our own journey.
So, sarah, welcome.
Speaker 1 (01:10):
Thank you, Bob.
I'm honored to be here.
Speaker 2 (01:12):
Thank you very much for asking so talk to us a
little bit, Sarah, about yourlife and your journey here, and
you know what your experiencewas.
Obviously, COVID has been frontand center on all of this and
all of the shutdown and tryingto deal with the healthcare
industry, and COVID was a horrorstory at times.
So tell us a little bit aboutwhat you've gone through and
(01:34):
what your journey's been.
Speaker 1 (01:35):
My journey began when my husband, ben, was diagnosed
with an autoimmune issue back inthe winter of 2016, 2017.
And the caregiving learningcurve at the start was pretty,
not very steep.
One step at a time, we weretold that his issues would be
(01:56):
handled symptom by symptom andwe were doing a great job with
that until, fairly suddenly, weweren't with that.
Until um, fairly suddenly, weweren't it.
Uh, the disease migrated fromhis um gi tract to his joints
and his tendons and eventuallygot to his heart and by the
summer of 2018 he needed apacemaker.
(02:18):
And by the summer of 2019 itwas obvious that his only hope
for survival would be a hearttransplant.
And in the meantime, he and Iwere preparing for me to be on
my own because we pretty muchknew he had a death sentence.
So we came into COVID, trying toget him onto the heart
transplant list, and that's anarduous process and he was just
(02:44):
getting sicker and sicker.
Two weeks after the pandemicwas declared, his kidneys shut
down and he ended up in thehospital.
He wasn't yet on the transplantlist.
Because of hospital protocolsto do with COVID, I was not
allowed to visit him.
In the midst of all of that,they finally got him on the list
.
Then he was off the listbecause he was too unstable.
(03:07):
Then they put him back on thelist and they were about to take
him off the list again when aheart was allocated.
So the surgeon said on the wayinto the OR this is 50% of the
battle.
The other 50% will be recovery.
And what we didn't know until aweek later was that Ben also
had a broken hip.
Speaker 2 (03:28):
Oh, my goodness.
Speaker 1 (03:29):
So when he finally came home to me 10 weeks after
going into the hospital, he camehome with a new heart, in a
wheelchair because they couldn'tdo the hip until he was strong
enough for that and he wasindependent, not looking for
game relief.
So so my, my caregiving journeyat that point went from zero to
(03:50):
a hundred miles per hourOvernight.
Speaker 2 (03:53):
In our experience.
A lot of our clients tell usthat working through the
hospital and and rehab and homecare and all of that, it almost
seems like a maze at times.
We talk about that Children'sgame, shoots and Ladders.
I remember playing that with mykids and you get all the way
through the game.
It seems like you're makinggreat progress and all of a
(04:13):
sudden you slide back down tothe beginning.
And that's been our clientexperience in dealing with this
and it's just the nature of thebeast kind of a thing that when
trying to work through thehealthcare industry there's so
many moving parts.
We have to deal with thetransitions between the hospital
and rehab and, whatever thenext step is, we have to deal
with the medical cutbacks and itsounds like that your husband
(04:35):
had quite a few of those.
Talk to us about that, yourexperience first, of trying to
just cut through the clutter andcut through all of the multiple
sources of information.
Speaker 1 (04:47):
Our situation was unique to us in that it was the
midst of COVID so I couldn'tvisit him and we were dependent
on all the nurses and doctorsfacilitating our community
patients with each other, andalso all of my advocating on his
behalf was via phone or Zoomcall, but it certainly wasn't
(05:08):
unique to anyone going throughhospital stuff in the spring of
2020.
We were just one of hundreds ofthousands of couples healing.
What kind of families doingthat?
So the COVID complication Idon't know how many of our
issues were COVID related andhow many of them will just the
(05:30):
red tape that is out there, butthere were certainly many times
when one step forward wasfollowed by two or three or
eight steps back.
We were blessed to have goodinsurance and that was never
really an issue for us.
The issues that drove me nutsand made me lose sleep at night
(05:50):
were after he came home andtrying to get the home care
support to work.
As I said, he was in awheelchair, he was on opioids,
he had a massive bed sore, whichwas the other hurdle we needed
to get over before they couldfix his hip, and my kids say
(06:11):
this is going to be on mytombstone.
I'm just an English major, butfor me to have to deal with that
bed sore.
I was in over my head, and thatwas not the only wound he had.
He still had a wound from histrach.
He had places where they, wherethey'd done catheters up to his
heart through his groin.
So, like I mean there would.
There were all kinds of thingsthat needed to be addressed, and
(06:34):
the home health care agenciesthat were supposed to be helping
us were very interested in our,our good insurance and not
necessarily very interested inactually showing up and doing
the work.
One health care aide who justsaid to me oh, that part where
they tell you that dressingneeds to be changed every day,
(06:57):
that's not really true.
You go for three or four days.
Oh boy, he's a heart transplantpatient and it's COVID and I
have an English major, so I'm intotal panic.
Anyway, the people who camethrough for us finally were the
third agency that sent a nursewho came out on a regular basis.
(07:20):
By the time she was showing up,4th of July was approaching and
so she was going to haveseveral days off because of the
holiday.
And when she first said that,she could see on my face that I
was in shock.
I was frustrated.
I was.
You're the first person I canrely on and now and now you're
telling me you're not going tobe here.
(07:41):
And she was wonderful aboutsaying I'm not going to be here,
and she was wonderful aboutsaying I'm not going to be here,
but I'm going to show you whatyou need to know to get through
the next five days.
And she finally stopped andeducated me.
Nobody else had taken the timeto educate me, they've just been
giving me excuses on.
If you live in the Florida Keys, you'll fall away and it's
difficult to get there and it'sCOVID, so we don't have the bus,
(08:02):
you know, and she was love herfull.
Speaker 2 (08:18):
Don't know how we would have been better served if
it hadn't been a pandemic, butI think people will continue to
struggle with these types ofissues even after the pandemic,
even today.
Speaker 1 (08:32):
We're in 2024 now, and the book is about how Ben's
health declined precipitously,how he nearly died and how he in
fact saw his way back to you,but I don't think it gives
(09:00):
anything away to reveal thatwithin three weeks of his coming
home, somebody filed a reportwith the State Department of
Children and Family Servicesregarding elder abuse.
The state's laws are that thatneeds to be investigated within
24 hours.
So this lovely young womanshows up at our house and she
called ahead of time.
She told me where she was from,she told me that she needed to
come talk to Ben, and Ben wasthrilled.
(09:24):
Ben was recovering, but he didnot have all of his executive
function yet.
And he was just delighted tohave this lovely young woman
come sit and chat with him abouthow he'd had a heart transplant
and how his hip was broken andwhat needed to happen next.
And I needed to stay in theroom because Ben is hard of
(09:45):
hearing it's COVID, so we'rewearing masks so he can't even
read her lips.
And so when she said I'd liketo talk with you alone to Ben,
he said Sarah needs to stay.
She's my translator.
But really all I was allowed todo was take off my mask and
repeat her questions so that hecould understand that she was
(10:06):
asking.
Speaker 2 (10:07):
Right.
Speaker 1 (10:07):
And not until after she left did he realize.
And she had him sign a bunch ofpaperwork and had left copies
of that with him.
So I took her and as for her togo back to the fort.
When I got back to where he wassitting in his wheelchair and
reading through these papers, hesaid this looks like we need a
meter.
(10:27):
What's going on here?
And I said you know, dependingon what she says in her report,
they could remove me from ourhome or they could remove you
from our home.
We don't know.
We were totally cluelessthrough that full process.
We did get in touch with alawyer that night and he was
(10:48):
wonderfully reassuring aboutthis.
Is the way the state law worksand you are probably not false
of this investigation.
It's probably on your thirdagency and you less than a week,
but we never we never heard anykind of resolution about it.
The state agency called us acouple times to see how you were
doing, but they never said thefaces and it was all of this
(11:10):
stuff happened.
Speaker 2 (11:12):
I agree with you on this as far as in Michigan we
call it Adult ProtectiveServices.
Even I get a little nervous whenI hear that Adult Protective
Services is coming in orinvestigating in a matter that
we're working on, and I can'timagine what the families have
to feel about it.
What's interesting about it isthere are times where I find
that adult protective servicescan cause certainly a lot of
(11:34):
anxiety, but sometimes it cancause issues with moving matters
forward.
A lot of financial support andthey're able, you know, to
initiate some court processesthat they really couldn't afford
(11:56):
to do on their own, and nowAdult Protective Services is
taking on that burden.
There's some situations whereAdult Protective Services can
help us get to the head of theline for caregivers.
There's a program in Michigancalled WAVER.
It's a home care programthrough Medicaid.
There's a waiting list, and sothrough Adult Protection
Services, sometimes they canhelp us get to a higher spot on
(12:17):
the waiting list so that folkscan get the care in their home
that they need.
I think that's what I'm hearingfrom you is one of the real
important things to you whereyou were able to care for your
husband in your home and that hedidn't have to go and live in a
nursing home.
Speaker 1 (12:32):
We were very fortunate on that score and I do
appreciate that the agency wasdoing its job and that there
could have been a time when weneeded them to be advocating on
our behalf.
What was scary for us was thereport of elder abuse and not
knowing where that had come fromand the sort of paranoia of
(12:55):
who's watching us and who'ssaying something, Because we
were both doing our best.
I mean, it was just achallenging moment at a time
when I already felt challenged.
I was suddenly responsible for20 prescriptions and three hot
meals a day.
I mean, Ben had come home fromthe hospital where he had 24-7
(13:19):
undivided attention of all kindsof medical personnel and
janitorial staff andnutritionists and because of
COVID he came home to just me onmy own trying to manage all
those things.
So the abuse filing was out ofthe left field and really,
really disconcerting at a timewhen I was already disconcerted.
Speaker 2 (13:40):
Well, that brings up a really important issue and
you've addressed this in yourbook but the issue of making
sure we're taking care of thecaregiver too, of making sure
we're taking care of thecaregiver too.
So I'm sure you've heard thisthat often the statistic is that
the caregiver spouse often diesfirst, and I know you guys were
younger, but that is a verycommon statistic that a
caregiver spouse all of a suddenis thrown into this, and you
(14:03):
described it very well.
In just a short period of time,you went from having to manage
all of this, plus the anxiety ofthe investigation and just the
stress of everything.
You talked about losing sleep.
I work with clients on us to say, okay, I know we're here to
talk about the husband, but weneed to make sure that the wife,
whoever the caregiver spouse is, that we're taking care of them
(14:25):
, we're giving them propersupport, we're giving them some
respite, some time to time away,some time to regroup and, you
know, taking some of the burdenoff, because what you described
is exactly right you go fromthree shifts of people multiple
people taking care of somebodyto going home and, for the most
part, you're a 24 hour caregiver.
You're taking a place of threeshifts of multiple people and
(14:47):
you know how to do all of that,and it's incredibly challenging.
Speaker 1 (14:50):
So talk to us a little bit about your experience
and and maybe how to make surethat you're taking care of
yourself too the hospital andrehab were both very good about
calling me and putting methrough um zoom call training
sessions on this is like I.
I probably I don't know howmany different sets of personnel
(15:12):
I talked with physicaltherapists, nutritionists,
doctors.
The nurses when Ben wasdischarged from the hospital to
rehab actually made a point ofcalling me and at that point
they didn't have to.
I didn't need to hear fromanybody until he was discharged
from rehab.
The nurses made a point ofcalling me and saying your
husband talks about snakes andreptiles a lot and he needs to
(15:34):
not touch any for at least ayear.
So that's the kind of attentionthat some people were offering
me and I deeply appreciate allof that.
But the reality it's one thingto go through a Zoom call and
have a nutritionist list all thefoods he's supposed to have, or
the pharmacist tell you whichmeds he's supposed to have when
(15:56):
and it's another thing to besitting there looking at all the
piles of pills or looking atthe empty meal tray and thinking
, okay, what am I going to puton there?
Now, I'm a list person, sothere were lots of lists, there
were lots of checklists, andthat was very helpful.
I journal when I'm panicking,so I did a lot of journaling,
(16:16):
trying to make the times journal.
Someone had suggested to mesince Ben had to be in a
different room than I was in wecouldn't be roommates while he
needed a hospital bed and acommode by the side of the bed
and all those kinds of things.
Someone had suggested to me ababy monitor, which was an
awesome idea.
He had the main unit by him andI had one by my side of the bed
(16:41):
and one in the kitchen and oneby my desk, so that all he'd
have to do was kind of whisperlike I need your help, so that
all he'd have to do kind ofwhisper like I need your help
and and I could get to him um,without him having to go to the
stress of calling for me oryelling for me meditating I did
some meditating.
I'm, my family and friends arelike really you.
(17:04):
You took the time to meditate.
I I guess that's maybe just asign of how stressed I was that
I was making myself take thetime to do that.
That was very helpful, and I'malso someone who needs to walk,
not because I want my 10,000steps a day, but because I get
antsy and if I don't move orswim I go a little nuts.
(17:28):
So those were my forms ofhealthcare.
I was also very fortunate andmaybe this was because of COVID,
and everybody was sheltering inplace and had their special
COVID pods and balls.
But people were wonderful aboutreaching out via phone, via
(17:50):
text, via email or taking youfor walks where we're standing
10 feet apart.
We were a subject of a lot ofpeople's attention and that was
a huge blessing.
I'd go for a walk and I'd comehome and there would be a bag of
bagels on my front doorstep ora bouquet of flowers.
Or one time I walked in andthere was a meal on my dinner
(18:12):
table.
Someone knew that I had beenaway on a walk and had come in
and left a hot meal for me, so Iwas very fortunate that way.
Speaker 2 (18:23):
Very nice.
Speaker 1 (18:24):
The support system is important.
Speaker 2 (18:27):
Let's talk a little bit more about your book.
It's a really engaging book onmy way back to you.
So what inspired you to write abook about your experience?
Speaker 1 (18:37):
Well, I've said that I journal and, after all was
said and done, there was a lotthat I needed to process about
Ben's experience, about ourexperience.
Ben calls it my book, my story,I call it his book.
It's his going on the hero'sjourney.
He started out great.
(18:58):
He got really sick, he had toleave home, he had to endure a
lot of adventures while he wasgone, and then he returns home a
changed person, with a lot moreadjusting still to come.
But I needed to process thingslike having missed the fact that
his hip was broken when he lefthome as his kidneys were
(19:19):
failing, and that was.
It wasn't an oversight, it wasthat we were overwhelmed by how
sick he was.
He had so much going on.
I did notice a couple of daysbefore his kidneys failed that
he was popping ibuprofen like itwas jelly beans and I asked
what was going on and heconfessed that he had fallen
(19:42):
asleep on his way back from thecommode to the couch at two in
the morning and gone over like atree in the living room.
He was sleeping on the couchbecause he was sleeping so
restlessly at that point that hedidn't want to fall out of bed.
Three feet from the bed to thefloor, but 18 inches from the
couch to the floor made a littlebit more sense to him.
(20:03):
So here I am, his caregiver,and I missed that.
He had a broken hip.
He probably never, because ofhis autoimmune issues, we're not
sure that he ever would havebeen accepted as a heart
transplant candidate, but he wasin the hospital and we forget
that at that point of thepandemic you'd drive in your car
(20:27):
to get a COVID test.
Someone would scratch yourbrain with a cotton swab and you
had to then wait for three orfour days before you got your
results.
So the only people who werebeing taken into the OR were
emergency situations caraccident victim, a gunshot wound
situations, a car accidentvictim, a gunshot wound, or in
(20:47):
the case of the transplants,that happened that spring, at
least at the hospital where Benwas, people who were already in
the hospital so sick they weredying.
But the hospital knew they wereCOVID-free and they would take
them into the OR when unworkingbecame available.
So I needed to process that heshouldn't have gotten a
transplant.
He got a transplant.
He also, oh my goodness, neverwould have gotten a transplant
if anybody had known about thebroken hip.
So there was a blessing in ourhaving missed that.
(21:10):
There was a lot to go on andthe part where I had to take
care of him on my own I go backto.
I'm just an English major andthey trusted me with keeping him
alive.
That was my responsibility andthat was an overwhelming thing.
I was lucky enough to be ableto break it down into smaller
(21:30):
pieces and handle it and gethelp when I finally needed it.
But going into it I didn't knowthat was how it was going to
turn out.
Speaker 2 (21:38):
I know your book has gotten a lot of accolades.
I saw the quote from Kathy LeeGifford and that was a wonderful
quote.
I'll summarize it.
It said something to the effectof, after reading that book,
well, she didn't know you, she'dlike to know you, and I thought
that was a very nice quote fromKathy Lee.
Speaker 1 (21:57):
Yeah, I'm hoping to meet her one day.
We'll see.
Speaker 2 (22:00):
And others.
It is a very engaging book.
She and others it's just been.
It is a very engaging book andyou know you've gotten a lot of
really interesting people thathave read it and enjoyed it, and
so I do encourage folks to pickthis up.
It is worth reading.
And one of the things in thebook that you talk about is some
practical advice, and I kind ofwould like to go through that.
(22:23):
So I'm going to, you know,quote some of the or not quote
them, but just kind of gothrough the list, and then I'm
going to ask you to kind ofanswer each of the three things
or each of the four thingsseparately you talk about, in
dealing with all of this andjust trying to cut through this
maze, what questions to ask, youknow, and I thought that was an
excellent way to word that whatquestions to ask, and I thought
(22:43):
that was an excellent way toword that.
Then, what notes to take, sowhat signs that you shouldn't
overlook and making sure thatyou have soft gears.
So let's start back at thatfirst one.
In this situation where you'rehaving all of this input from
all different sources, whatquestions?
Speaker 1 (23:00):
What are the questions that we want to
remember to ask?
You need to ask what they'regoing to be handling and what
you're going to be responsiblefor, and will there be for lack
of a better descriptioncontinuing education Phone
numbers?
How do I reach you in anemergency?
What does an emergency looklike?
When Ben got his PACE name, weneeded to know what a?
(23:22):
I don't know what they call it.
I call it a correction, but ifhis pacemaker was triggered,
what were our responsibilitiesat that point?
So you just, if you don't knowthe answer it's not a stupid
question Ask.
If it's something that's goingto keep you up at night.
(23:44):
Ask, don't.
Don't hesitate to ask thequestions, ask for help those
are excellent questions.
Speaker 2 (23:52):
I want to kind of circle back to that first one of
making sure that you're clearon what are they going to do and
what are they are you expectedto do.
I wanted to circle back tosomething that you talked about
earlier and with insurance andsaying okay, the insurance was
providing some folks to come inand help out and change the
dressing and things like that.
Typically, insurance is goingto provide whether it's Medicare
(24:15):
or, you know, you were tooyoung for Medicare, I believe,
so you were on regular insuranceand so it's going to provide
what we would usually refer toas skilled care, in other words,
a nursing assistant, a nurse, aphysical therapist, things like
that.
Is that, primarily, they didn'tprovide.
Insurance wasn't paying forsomebody to come by for hours a
day to help them get dressed orto help them shower, things like
(24:38):
that.
That was not the type of thingsthat insurance, I'm guessing
based on my experience thatthat's accurate.
Speaker 1 (24:44):
It was, yeah, pt which ended up not being useful.
I mean right from the start.
When it came up for rehab, a PTperson came by a couple of
times and she was wonderful thathe finally said, like with the
broken hip without no guidance,I can make this worse rather
than better the broken hipwithout guidance and I can make
(25:06):
this worse but rather thanbetter.
But he was also great aboutsaying like here's, when you are
able to get in the shower, thisis going to be the best way to
do it, and then just giving usyou were newbies um, giving us
some basic information.
But gait belt I had heard ofgait bounce before and maybe
it's because I write um.
I'd always heard it as g-a-t-eum and when I finally realized
(25:26):
that it was g-a-i-t and it hasto do with how a person walks,
it has to do with their gateyeah, it made a whole lot more
sense to me.
But teaching us how to use agate belt, a home health aid was
supposed to come by to helpwith a shower, again with a
broken hip and not being able tomove around.
We didn't do that.
We were, we were dependent upon, but I think must have been an
supposed to come by to help withthe shower, again with a broken
hip and not being able to movemore around.
We didn't do that.
We were, we were dependent upon,but I think must have been an
(25:48):
lpn license practice to come inand change the dressings and in
an ideal situation that personwould have visited right before
the home health aid.
Then, you know, the home healthaid would have visited right
before the lpn.
So if we'd known when the lPNwas coming, I would have been
able to get him in and have ashower with the help of a home
health aid, and then we wouldhave the licensed practical
(26:10):
nurse to apply the variousmedications and set his
dressings.
Speaker 2 (26:15):
And I think that goes to your point about asking the
question of what's going to becovered in LAT, and I think
that's important for ourlisteners to remember that you
know sometimes you're going tohave to supplement it with other
things, whether it's family,whether it's paid caregivers,
paid out of pocket, things likethat.
But the big question I think isa really important question
(26:36):
that you raised is what are youresponsible for?
You know, whatever thecaregivers are coming in, the
skilled people that are comingin, what is your job?
What are you responsible for?
What are the outer limits?
When are you going to be ableto do your job?
You raised some very goodpoints there.
We can't do physical therapyunder these conditions or
traditional physical therapyunder these conditions to
(26:57):
actually make it worse.
That's a really importantquestion.
That's a really importantquestion.
So I just wanted to highlightthat because I agree with you
Asking the right questions forolder folks and our clients.
Sometimes the families aredealing with a dementia
diagnosis.
One of the things I alwaysencourage our families to ask
more questions like can you giveus an idea of what we think the
(27:20):
specific diagnosis is, ratherthan just sort of generalized
dementia?
And I think that's what you'regoing to.
You want to know as much as youcan and sometimes if you don't
ask the questions you're notgoing to get it.
If you hadn't, you know, if thelook on your face when your
nurse was going on vacationwasn't, you know, a little bit
of panic, you know there mightnot have been that education to
(27:40):
say I'm going to get you throughthis and so those are and
there's a learning curve todealing, to learning.
Speaker 1 (27:45):
Here all the various agencies are.
And I thought that I was justgoing to be dealing with the
rehab facility said we're yourcentral information system.
If you have any problems youcan call us.
But there was also thehealthcare agencies, and then
there was like a middleman orinflated agency that would call
and say we're calling on behalfof your insurance company to
(28:06):
make sure that you're actuallygetting the care that you're
supposed to be getting.
I had no idea who that was orthat such a thing existed.
So there's just more and morepeople called in in their
official capacities and I had noidea who they were or what
their capacities were, or howthat system worked, was
structured, much less how itworked.
Speaker 2 (28:27):
The next one on here is what notes to take, and I
think that was an interestingone.
I hadn't thought of it that way, but you wrote down what notes
to take and I want to inquiremore about that.
Speaker 1 (28:38):
I was taking notes at all of Ben's doctor's
appointments from the beginning,partly because that's how I
manage information.
I hear it better if I write itat the same time and that would
also give us the material weneeded before we go back to the
next appointment to say, okay,here's what you said last time,
(29:01):
here's what's happened since.
How do these things connect?
How do we make progress on this?
One of Ben's earliest doctors inall of this, as I'm taking
notes and I'm writing numbersdown blood numbers and such
stopped and said I can see thatyou are taking this down and I
can tell I can take yours andBen's temperature right here,
(29:24):
right now.
You think that you can improvethat one number?
You can't.
That number is what it is andthat will be that number for the
rest of Ben's life.
So it was an educational partof my taking notes also showed
the doctors that we were payingattention in and that they would
take the opportunity to educateus further about different
(29:45):
things, not just what questionsthey might inspire about
different things, not just whatquestions they might inspire.
It was also important to beable to look back and say here's
when he started this medicationand it was those kinds of
things, or here's when thatsymptom started.
Speaker 2 (29:59):
That can be very important.
It's one of the things I knowfamilies that I work with
struggle sometimes is sometimesfor the legal and sometimes for
the insurance or benefits.
We need to know the progression, we need to know certain dates,
and that's often can be astruggle for families because
they're going through thiswhirlwind of everything that's
going on.
(30:19):
So I agree with you if we can,you know, keep good notes and
especially keep it kind of atimeline of things that that can
help and it can also help youkeep some perspective.
You know, talking abouteverything that had occurred in
the one week time period thatyou were referencing when you
first came home, that can behelpful to kind of have that.
(30:40):
This is the timeline that wedealt with there.
The next one you have is and Ithink this is really interesting
too signs not to overlook.
So I'm curious if you couldtell us more about that.
What are the signs not tooverlook?
Speaker 1 (30:52):
They can be really subtle.
In Ben's case, the first signthat anything was wrong with him
was he had always been able tojust whistle with one hand.
And when we're at a wedding andthey introduce the bride and
groom after the exchanging ofvows and everyone's applauding
what Ben does and Iautomatically my hands go up
(31:14):
over my ears because I know he'sgoing to do it.
He's going to do thisear-splitting whistle and I see
out of the corner of my eye that, instead of just doing it this
way or this way which he neverdid he reaches up like this and
then he holds his fingers closertogether.
And I didn't ask about it atthe time, I asked about it in
the car on the way home and hesaid it's just, my fingers are a
(31:34):
little swollen.
And what do you mean?
Your fingers are swollen?
That's really weird.
Oh no, it's okay, and I said isthere anything else?
Oh well, yeah, they kind ofchange color when I'm cold, or
when I go from cold to heat.
I'm cold, or when I go from coldto heat, and so I ratted him
out a couple of weeks later whenwe went to get our flu shots
and our doctor said you know,gee, Ben didn't mention that,
(31:56):
but I'm not giving him his flushot today.
We're going to do these bloodtests instead.
So we were lucky enough, by myhaving nudged him and ratting
him out, to have his autoimmunediagnosed before what is
typically the initial symptom ofthat particular autoimmune had
(32:18):
even been evidenced.
And so you have to trust yourgut.
I mean.
I'm not saying be paranoid, I'mnot saying go onto the web and
search every little thing, butif something's odd, speak up and
ask about it.
I also.
I would say ask about it ratherthan look it up on the internet
(32:38):
.
Speaker 2 (32:39):
Right, good idea.
And then we talked about thisone, the fourth one, which is
self-care and self-care for thecaregiver spouse.
So anything else you want toadd on that, because I do think
that's incredibly important.
Speaker 1 (32:52):
The statistic that you were citing about caregivers
pre-deceasing their patients.
I've heard that and I've seenit twice in our family my father
pre-deceased my stepmotherwhile he was caring for her, and
Ben's father pre-deceased Ben'smom um, under the same things
and it's.
You need to not forget thatthat you are a human being with
(33:16):
needs.
Don't hesitate to ask for help.
Don't hesitate to uh, forgiveyourself.
You're not going to.
There is a learning curve andum, you're not going to get
things to do with caregivingperfect on the on the first go
round.
You might with caregivingperfect on the first go-round.
You might not get them perfecton the eighth go-round either,
but be forgiving of yourself andof others who reach out to help
(33:37):
and support you.
The sanity aspect of it iscrucial, absolutely.
Speaker 2 (33:46):
Well, sarah, this was a very interesting conversation
.
Thank you so much for writingthe book.
It is available on Amazon, soif you would like to pick it up,
that's one of the ways that youcan find.
It is on Amazon.
Anything else, sarah, thatyou'd like to leave us with for
families that are dealing withthis, or a lot of the listeners
to the podcast are actuallypeople that are, you know, in
(34:06):
the health care industry, sosocial workers and therapists
and things like that listen tothe podcast, are actually people
that are, you know, in thehealth care industry.
So social workers andtherapists and things like that
listen to this podcast.
So anything that you want toleave to either the family,
caregivers or the professionalsthat work in this industry.
Speaker 1 (34:21):
First, to the professionals.
I do have a few friends who aredoctors, who have read it, who
have thanked me for writing itbecause they said you know, you
learn about it in med school.
You're supposed to payattention to the patient and the
families, um, but it's areminder, um, especially one
very good friend of ours, uh,who's been in the or thousands
of times.
He said I forget that it's myjob, but for you it was a
(34:44):
miraculous thing that he cameout of the OR as well as he did,
and the other thing that madeour miracle possible is organ
donation.
If you are considering being anorgan donor, please let your
family know that that'ssomething you feel strongly
about, because for us, a family,in what has to have been their
(35:06):
darkest moments, made a decisionthat made them, that enabled
our miracle and also, I believe,enabled them a miracle for at
least four other familiesbecause of the numbers of organs
that were able to go out, andthe ripple effect from that it's
not just.
It's not just a heart, it's notjust a kidney, it's not just
(35:26):
that one patient, it's thatpatient's family and friends,
it's not just a kidney, it's notjust that one patient, it's
that patient's family andfriends.
It's really really powerful,and we are so grateful to those
people for making that decisionin a really terrible moment,
absolutely.
Speaker 2 (35:45):
Well, thanks again, sarah, and for our listeners,
don't forget to subscribe.
You can listen to this podcaston any place that you can find
podcasts.
Will you find us there?
Or you can go to our website,manorlawgroupcom, and there is a
link to the podcast or, like Isay, any podcast service that
you use.
(36:06):
Don't forget to subscribe sothat you know when the next
interesting topic will come out.
This was very enlightening,sarah.
I appreciate everything thatyou've done to spread the word
and share your story.
Speaker 1 (36:22):
Thank you, Bob.
I was glad to be here and Ireally appreciate your giving me
the time and the forum.
Popular Podcasts
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com