June 27, 2023 • 55 mins
Kitty Eisle, executive producer for podcasts with Texas Public Radio and NPR, as well the host of Twenty-Four Seven: A podcast about caregiving, joins us to discuss caregiving for parents, how to prepare ahead of time for caregiving needs, and why it's important to know your neighbors.
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Episode Transcript
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(00:06):
Welcome to Love doesn't pay the bills. Where we make visible the often unseen
experience of family caregiving. I'm LisaChuti. I am a family caregiver.
Kitty Eisley is with us today.Kitty is an executive producer for podcasts with
Texas Public Radio and MPR. Shehosts twenty four seven, a podcast about
caregiving, which came out of personalexperience caring for her dad. Welcome Kitty,
(00:27):
Thanks so much for having me,Kitty. What surprised you the most
about becoming a caregiver? To justjump into it? Jumping into it?
How unprepared I was because I didn'tknow what I was going to need to
know. And I think for manypeople, and I actually before I even
dance with I just want to startfor your listeners. There are fifty million
(00:51):
of us in America doing this.Fifty million people, and you don't even
know that because it's all happening athome or in an institution maybe, but
for most people it's caregiving in someform, for unpaid for somebody over fifty.
So I became one of those peopleunexpectedly. It all started in twenty
thirteen when both my parents had badfalls and were in the er or ICU
(01:15):
and then had to go to stepdown rehab facilities. That's kind of what
people do if you're in the hospitalas an older person, you often get
dismissed and sent to usually a nursinghome for a short stay to get your
balance or work on your whatever itis that you've broken or had a problem
with. But when both of themhad this happen within a month, I
suddenly realized, like, oh mygod, my parents aren't even that old.
(01:38):
I might have to step up ina way I never imagined. All
of a sudden, it was crisistime. And at the time I was
at NPR and I was able totake advantage of Family and Medical Leave Act,
and you can just for people toknow you don't have to use it
all at once. But I hada couple of weeks where I just said,
I have some banked sick leave.I'm going to use it so I
(02:01):
can stand up what's going on withmy parents, And I thought I had
gone to another land. It wasso foreign that when this sort of calmed
down and resolved, I went toa movie with a friend and I felt
like I was culture shocked, likeI hadn't been in a normal world in
a month, I can relate tothat, right, Yeah, And I
(02:22):
think for a lot of people becausethis usually comes on you know, it
may happen gradually, but it alsohappens often in a crisis, earn emergency,
usually a fall, an illness,you know, some disruption that becomes
an instant change of life, changeof status. Everything you are familiar with
suddenly has to be on the backburner because your immediate problem is an elder.
(02:45):
In my case it was an elder, I know in your case you
care for a child. The bigsurprise was how little I knew about how
our systems work, how untransparent mostof it is because it's not centralized.
There's not a national database. There'scertainly national agencies, but every state has
its own systems. We as anation do not treat care as something of
(03:10):
a priority. And it's the samething for childcare, and historically that's always
been a woman's job and an unpaidone, and the same thing goes for
caring for elders. And I personallyfeel very strongly that if you have a
society, the job of having asociety is to help you when you can't
(03:30):
help yourself. And that's because youhave an infant who can't who needs help,
or you are an older person whoneeds help. But we don't have
those structures. We have them verykind of. There are some, but
they're not sufficient. And I don'tfeel like we've actually said to ourselves this
(03:50):
isn't only one person's job. It'snot just one family member that can handle
this. And there are a lotof reasons for that, but I'll leave
it at that for now. Yeah, I very much relate and a ligne
with everything you just said. Andthat's really what I and we are all
about at Love Doesn't Pay the Bills, is is bringing these experiences of caregiving
(04:15):
that in some sense are really universalpublic because they're so kept behind closed doors
and treated as if there's something privateover there, even though everybody's going through
them. And we have needs atdifferent times that really can only be met
(04:36):
collectively with a large effort together.And I'm glad you're doing the podcast because
again and the more notice we cangive to this, the idea that we
have a systemic solution, systemic effortsto support families. Yeah, it's something
we don't. I mean, youinternalize so much of this, like oh,
I should be able to handle this. I should be able to get
(04:58):
this all set up. And thenwhen you realize isn't just on me.
One thing I did that was surprisingwas, you know, I've had friends
who've managed newborns and toddlers, andit took me a while to realize,
like my dad at one hundred andeighty pounds, is a very different body
to care for than a toad.So even doing the physical helping someone lift
(05:20):
or move or stand, or keepingthem balanced or getting them off the floor
if they fall, all of thesethings are exponentially harder and more just.
They're more different than I thought,like caring for a kid. Absolutely,
even different individual people can be sovery different, even if they have the
(05:44):
same same diagnosis. And you know, my experience was primarily with my daughter,
who obviously started out as a tinybaby, and now she is an
adult and it is a lot different. However, I had all those years
to grow slowly with her, andI took a job for a little while
in a rehab facility like you mentioned, where I was assisting ots and pets
(06:09):
and speech therapists generally after people hadhad a surgery or something like that,
and I found that I actually wasnot very good at that, and I
am very awesome with my particular daughterafter all these years of knowing her,
Whereas people come in to work withher and it takes a good solid six
(06:32):
months or so for them to developa real ease with her and rapport with
her, and I know a lotof things about her that make it easier.
God bless you for trying, andgodless the ots occupational therapist, physical
therapist, speech therapist. I cannotsay enough about the people that I encountered
who went into it for the rightreasons and we're doing their best to care
(06:54):
for in our case, for elders, it's a serious commitment. It's hard,
it's not necessary early lauded in oursociety, and it's deeply underpaid.
Absolutely, that's I agree a thousandpercent with all of that. And so
we could talk a little further aboutthat under payment or how would you change
(07:16):
the public systems from your experience ifyou could, what kind of solutions would
you specifically want to see. Iwould like us to be able to pay
for and get much more help forlong term care and long term care,
I mean generally when you're really gettingold and you don't have the facilities or
(07:38):
the capabilities to care for yourself asyou had once. Lots of people get
old and have some short memory loss, or might have some physical complexities,
but that doesn't mean they're not ableto live independently. We have medicare as
what are your previous guests talked about. Medicare is basically your health insurance over
sixty five or sixty seven, andit only pays for your care if something
(08:01):
goes wrong for a brief period oftime after say a hospitalization. It's limited,
so there is no money federally statecity to care for you if you
need help bathing, if you needhelp getting out of bed, if you
need help putting on your shoes,if you can't cook for yourself because you
can't balance simply to move a panwater over to the sink, if you
(08:26):
are no longer able to drive.There are certainly things for people who need
assistance getting places, But the ideathat we all have to somehow navigate this
period in which many of our ownfaculties are diminished all by ourselves is crazy.
And there are also some other factorsthat I've seen and that I'd like
(08:48):
us to recognize as we think abouta solution. People are living with fifty
percent longer than at the turn ofthe twentieth century, something like fifty it
might be a little longer. Somany, many, many Americans live a
lot longer with much more complex conditionsand challenges, things that would have killed
them before. So we're living awhole lot longer, often in less robust
(09:11):
health. We have far fewer childrenon average, so there are far fewer
family members who can assist in thatcare. Certainly my family, like go
back to generations and the great grandparentshad five or six kids, and there
was always somebody that they lived alot closer, which is another factor.
People often live at great distance fromnuclear family, so we are living longer.
(09:35):
We have fewer family members to involvein that care. We often live
at great distance, and we actuallydon't have what we've counted on in the
past, often the woman at home. That's true for some families. That's
always been an issue where family membershad to all work. But historically we've
treated women as the free labor andthat this is something that they take care
(09:58):
of on their own, and that'sjust not available anymore. So if we
have all these factors, kind ofadding up. What can the government help
us with? Well, it couldhelp pay for and train and supervise some
daytime care or some nighttime care.It can fund much, much, much
(10:18):
more dramatically, really well staffed andwell maintained nursing homes. Many many,
many people can't get even a bedin a nursing home. When there are
medicacas, there are in enough beds, they're on enough places, especially if
you're in a more remote rural place. I'm in a city, so there's
a lot more opportunity. The morefacilities and more people to hire. We're
(10:39):
heading into a moment with far fewerpeople who want to do caregiving. And
we saw that after COVID. DuringCOVID that the people were being put at
risk. Caregivers had much more likelyrisk because they were usually in an institution
with lots of older people, maybenot as well maintained. And they said,
you know, for fifteen bucks anhour, I can go to Target,
(11:01):
I go to Potli. I mean, the ald in my neighborhood is
hiring it like eighteen bucks an hour. And I don't have to lift or
bathe older people. I don't haveto physically put myself at risk and many
of the people doing it have nohealth insurance and they get injured. So
I'm making a lot of answers.That really should be one answer. We
need to ask and challenge ourselves tosay to government, we need better money,
(11:26):
we need more caregivers hired and reallypaid. Well. This is very
hard stuff and they're not going todo it if better jobs are available.
And we need to really value ourelders. In my position, I feel
like we've actually diminished them. Andyou don't see them in social media whatever.
How many times do you see anolder face. It's like we don't
really want to acknowledge that we havea harder time as very aged people,
(11:52):
and I think we can do abetter job. These are I mean,
I liked my dad, so Idid it. You know, I genuinely
cared. I didn't want to seehim in a hard situation. But not
everybody can pick up and move andI wasn't expecting to stay so long.
Yeah, and you never do know. Um, when somebody at the beginning
(12:15):
of their experience requiring care, youreally there's no way of knowing how an
individual's story will go. Yeah,it could be months, could be years,
could be exactly and I had noidea and who surprise. Um So
in my case, I thought itmight be you know, six months basically,
um my dad, you know,lucky for us, was able got
(12:37):
better, was able to live anotherthree years. But I didn't know I
was putting my life on hold.And COVID came in at the same time,
so I was able to the firstyear. I just didn't work that
much and I was completely out ofmy mind. I really really lost it.
And we were able to hire someshort term care, some part time
(12:58):
care, and then that went tofull time daycare, you know, full
time in the house the second yearand the third year. But I didn't
see that coming. Yeah, AndI think that that's part of why it's
so important to be talking about thesethings, so that people aren't surprised by
these sorts of events and nowhere toturn and have something set up that everyone
(13:22):
knows something's available and where to go, and even some more universal language around
some of these things. That's agreat idea, more universal language, like
no one wants to talk about theirwill or their you know, well this
let me raise an example, butI think was surprising to me my parents
(13:43):
had done their will and their advanceddirectives and their long term planning for like
the very end. So we knewall that stuff, but that didn't account
for those years before the very end, and it just kind of crept up
on them faster than they expected.And so we hadn't as a family talked
about it. We hadn't. Noone had done anything. My mom had
maybe looked at some assistant living places, but they hadn't moved that. You
(14:07):
know, their house was pretty onelevel and not too hard to work in,
but at a certain point we couldnot get a wheelchair into any bathroom.
Yeah, that's a big deal.It is. And until you have
a close family member or you yourselfuse a wheelchair, it's really most people
(14:30):
don't notice how few places really arewheelchair accessible and wheelchair friendly. I actually
was in a situation where I hada house rebuilt after the wildfire that happened
here. Oh boy, Aaron Oreganand we were needing to get this done
quick in a situation where there wereso many other people also needing to rebuild,
(14:54):
and the services were in high demand, and we were looking at a
company that we ended up using,which had pre designed floor plans. Well,
those predesigned floor plans are not ADA, and it made me super sad
to not be able to build theADA plan unless we spent more money.
But she seems crazy that you knowthat any company would be putting out plans
(15:16):
in aren't ADA compliant. Yeah,and so it you know, it's it's
it strikes me as something that's somuch easier to have universal design from the
beginning. Then make it this exceptionalthing that people when they suddenly need it,
when something has happened, when they'rein the middle of probably a traumatic
(15:37):
event happened to be able to tostart to have to start to address those
kinds of things exactly. And Ijust add to that, like I had
to go to a doctor's visit yesterdayor get a blood lab or something,
and I had to take my dadto a lot of those, and so
I was the one, you know, getting him from the parking lot into
(16:00):
the building upstairs to the doctor checkedin and all that. When I went
to check in yesterday, there's acomputer screen they check you in on and
it's the typeface is tiny, andI wear glasses, but I'm not you
know, I'm not feeble at thatrate. And I was like I can
barely see this, and it's awkwardto try to take my glasses off and
(16:21):
put my stuff down and type intothis thing. And it's just thinking by
any designer whoever designed the system thatis the automatic interface for people. My
dad could never have navigated that.And it wasn't that he had a problem.
It's that it's too tiny and tooconfusing. And we saw that consistently.
People would say, why don't youjust get your dad an uber app?
(16:41):
Like an older person, I mean, even though he had, I
would say, it doesn't work formost people. And so it's I think
we asked I think for me,and you asked earlier. What surprised me?
It kind of made me mad andI wasn't able to be constructive about
it. But I was like,how come everything is designed by a twenty
two year old guy that I hadto interface with in order to take care
(17:04):
of my dad. And let's justhave some of those great designers be around
their grandparents and they'll see, like, this is the way you can be
incredibly positive and constructive and inclusive foranybody who needs it. And thinking as
you know, computer menus or checkins or even trying to book an uber
(17:25):
or a lift. I would booka taxi if I could, just with
the phone. Most seniors I knew, you know, they have cell phones,
but it doesn't take much to getyou into a tangle. And I
think I found when you asked aboutsurprising things, I did find that a
lot of the quote solutions were gearedtowards somebody under forty. And it made
(17:47):
sense logically, But all the complexitiesof memory loss or following not a dementia
in my dad's case came from heartfailure, so oxygen to the brain and
vascular dementia meant that sometimes sequencing thingswas difficult. So doing things in an
order or maybe going backwards became harderfor him. Yeah, and that's things
(18:11):
like you know, making an orderor remembering your password and if it doesn't
if you type it wrong, notgetting kicked out. A lot of those
things were really basic, and Ifelt like, gosh, can't we How
do we make a better system first, how do we pay for it better?
How do we have enough caregivers?And how do we design? Like
you said, universal things that welcomeeveryone, that'll make you feel bad because
(18:34):
you can't do them right. Yeah, And universal design is often if it's
done that way from the beginning,isn't really any more expensive. It's when
we have to go back and makechanges to a house has already been built,
or a website that's already been designedor whatever, that it gets expensive
(18:56):
and challenging. So universal design justmakes all the sense in the world to
start with the idea that every personor as many people as possible, need
to be able to use something that'sput in front of the public anyway.
Yeah, even like grocery orders thateveryone started doing during COVID, you know,
ordering your groceries online. That isn'talways the most logical easy thing,
(19:19):
even though it should be. Yeah, that's something that theoretically is super simple,
right, theoretically, it's time fora break. Please stay right here
and we will be right back.Thank you for sticking around. We continue
our conversation. So we've kind ofwe've gotten into a lot of the challenges
(19:44):
that you faced, some of thethings that might have helped you meet those
challenges. Would you add any anythingelse that helped you with meeting the challenges
you faced. Yes, a coupleof things. And this might work for
your listeners, and I hope it'suseful. My mom died at seventy seven.
(20:04):
She's a lot of complicated health issues, and we knew as At some
point, I think when the hippolaws changed about health privacy, I had
to sign off on some documents sothat I could be informed if anything went
wrong. And so I went withmy parents to a lawyer's office and we
signed all this stuff. I didknow that they had a lawyer that they'd
(20:25):
drawn up their will with. Iknew who it was. I knew where
the wills were and where an electroniccopy was right there. You're ahead of
a lot of families, right,I mean, I was really grateful to
my mom for having organized that stuff, really organized it. At the same
time, they had a financial advisor, and I met him and I knew
who he was. And when mymom died, he called and said,
(20:48):
listen, let's have a meeting withyou and your sister and your dad.
Very small families. We need toput a new person as power of attorney
for your dad. Before it wasyour mom. Now one of you needs
to be health power of attorney overhealth legal decision making, should he have
a stroke or should something go reallywrong. Well, something went really wrong
the next year and I had powerof attorney and I met with the financial
(21:10):
advisor and Dad was in the hospitalfor three weeks in the ICU with you
know, we almost lost him,and as he was exiting, we actually
decided to have him go to afacility where we hoped he might stay.
Well, that meant a pretty bigupfront seat, and I was able to
call his financial advisor and say,listen, you know he's in the hospital.
(21:30):
You know I have power of attorney. Can you help us? Is
there money available that we confront thisright now? And can you make that
transfer happen now? Luckily they hadthe money saved. I think my sister
ended up paying for it, butgot reimbursed quickly. But it was that
kind of thankful to my parents thatI had been sort of just on the
(21:52):
off chance, introduced to the factthat they had a lawyer and they had
a financial advisor, and I hadthose numbers glowing endorsement for everyone to do
their end of life planning right.I mean, it just it was a
kindness of the on their part.It was truly a gift. And I
would I mean I did my willabout eight years ago because I just was
I was going to be away fora year, and I thought, let's
(22:14):
just get this all done and makesure my sister has it, my doctor
has it. And even now I'mhaving my house painted and fixed. It's
in a safety box in the houseand everyone knows where it is that needs
to know with the deeds to theproperty I own. And I thought,
this is the best thing that wasdone for me, So how can I
make that. I so am gratefulthat they did that. Yeah. Actually
(22:40):
similar where my dad hasn't got thereyet, but I know that he's prepared
and he has shown us, provideddocuments for my brothers and I and everything's
super clear, and it just is. It is a real huge sense of
relief of like, Okay, ina difficult situation, it's going to be
already challenging no matter what. Someof those things are not additional worries.
(23:03):
They're they're off the table and takencare of. In fact, Yeah,
like they had a leak in theirhouse when he my dad was in the
hospital and we had to have somereal serious work done in their basement and
I was already power of attorney,so I could go to the insurance and
say, hey, this is thedeal, here's the power of attorney documents.
I'm uploading them. You know,I have the same insurance company.
(23:25):
But that again was just a hugeIt made things easier. Another thing that's
really simple. I knew my parentsneighbors. They've been in the same house
for fifty years, and the neighborswere lovely on a small call to sex,
so I had phone. I've actuallygotten their phone numbers and emails kind
of the times I visit, andI knew my parents liked these certain neighbors,
and I was like, you know, we should exchange emails just in
(23:47):
case, you know, something happensat the house. You notice, that
was a big help. It's aquote I remember hearing more than one place
that you know, pretty much thebest thing you can do for your safety
is to be known. And no, your neighbors are people that are physically
nearby you. Yeah, Like ifyou notice the newspapers piling up, Dad
comes out and gets it every morning. So if you're not seeing them picked
(24:11):
up, call me. Small thing. But you know, if somebody lives
in a condo or an apartment building, it's ask who their friends are and
get those friends numbers, because usuallysomebody's in touch, especially for people who
are at long distance from their families. I was pretty much in the same
region, you know. They werein the suburbs. I was in the
city, but pretty close. AndI find most people are pretty pretty willing
(24:34):
to be helpers. And it happenedin my own building, my apartment building
where I live, you know,a much older woman got stuck in the
bathtub overnight, had blacked out,and her kids were pounding on the door.
And I opened my door and say, can I help you, like
what's happening? And they came inand used the phone. And I got
to know her and I would justoccasionally pop down and sit with her.
(24:56):
She would make a cake or somethingor find a treat, and I swear
I learned a lot from her kidsand from her. And I was like,
people did that from my grandmother,and I just thought, pay it
forward. I know my grandmother washelped by younger people who kind of made
a point of coming by and sayinghi. And I didn't do it a
lot, but I did it,and I stayed in touch with the family
(25:17):
even after she passed. And Ifelt like someone has done that for my
family, so small way to justsay thank you, and anybody who is
listening, who has an elder neighboror something. It's just the smallest thing,
but people really do appreciate being checkedon, or having somebody drop off
some brownies or all the stuff thatjust knits society. That is what civilization
(25:40):
is. Yeah, I think that'sa really good point. And I mean
I can think of a number oflots of times that my family have been
helped in big and small ways aswe cared for my daughter, and my
parents now are all having different thingsgoing on, and I asked, what
your daughter's situation is. Yeah,she has significant disabilities and including intellectual disability,
(26:07):
and so she was born with asmall cerebellum and something going on beyond
that that's never been really explicitly diagnosed, but it's just intellectual disability because she
didn't have the normal developmental path asa child, and most likely some kind
(26:30):
of stroke in judo or something likethat. And she's just she's super charming
and delightful and fun and she hasways of communicating pretty darn clearly. But
she does have limited language in thesense that you and I are talking right
now, more like word approximations,and we rely a lot on body language
(26:56):
and just act. She always doeshave a caregiver with her who knows her
very well. Part of what wedo for her is like translating with people
that know her less well. We'veused AC devices over the years and she
never really um took to them nearlyas much as using her her physical voice
(27:18):
in her body. Yeah um soum. Yeah. And she has challenges
with her balance and coordination and motorplanning and like if she can stand with
assistance, for example, but youwould never know when she might throw herself
(27:40):
off balance, and she is afall risk. Um, it's kind of
amazing that she's had a few faultsin her life with significant repercussions that she
has. She's had really none withwith with any kind of big repercussions.
And balls are a big deal.Elders are a very big yes. Yeah.
(28:00):
And banging your head is a bigdeal. Yeah, And as we
get older it becomes more and moreso because we bounced back from anything less
less quickly assly. Yeah. Sowhat else can I tell listeners? I
mean, what do you think people, especially with an elder, Because in
my case, I sort of thoughtof it as becoming a parent to my
(28:21):
parent and the podcast initially was calledDemented because that's how I felt. I
felt like I was losing my mind. And I also felt that the systems
in our country are broken, theydon't exist. It's crazy that we expect
this to be done by any averageperson who has no training as a nurse
or a physical caregiver or any ofthat. And we came to twenty four
(28:45):
seven, a podcast about caregiving becausesome folks felt like it was didn't sit
right with them. But I stillfelt like this is nuts, and it
really made me very kind of deeplydepressed and confused and taken a lot of
work to kind of compas asked that. And yet it's not what my parents
would want for me. They wouldn'twant me to feel, you know,
(29:06):
obliged to them. It just kindof the situation just sort of rolled out
that way. And then when COVIDhit there was just couldn't make it a
change. Yeah, COVID would complicatethings. Um. It did does complicate
things. UM. And I canso relate to what you're saying, and
it's it's you know, I thinkit's pretty taboo in a lot of circles.
(29:29):
When I got to points um becausewhen my daughter was, um,
you know, like twelve to sixteenor eighteen years old in that in that
range, and um, other familieswhere their kids had grown up at the
same time, the parents were becomingmuch more their time and energy for you
(29:53):
up again, they weren't really devotingtime and energy to parenting in nearly the
same way. And yet here Iwas still physically assisting my daughter to have
baths, still, you know,preparing all of her meals, still physically
helping her to move or get fromplace to place, and managing all of
her appointments and all of her anythingshe did socially. And also really really
(30:19):
struggling with financial financial with our financialsituation over all those years. But it
got to the point where I justreally started to feel like I've turned over
every stone. I spent a lotof years like seeking situations where I could
go contribute to that income, youknow, and my daughters still be well
(30:42):
cared for. And I am collegeeducated, I'm pretty good at researching things,
and I wasn't finding a way toget out there, like I'm a
journalist, I should be able tofigure this out, Like I know who
to call, right, I knowenough to call somebody and say what questions
should I be asking? Yeah,and what would you call? I mean,
I wasn't smart about like who tocall. I just knew enough to
(31:02):
call someone to say, there's whereyou start and this is what you need
to know find out. Yeah,we don't really have a good straightforward place
to do that. Although Brandy Listenerdealing with an elder, I would encourage
them to check their state. It'scalled the Area Association on Aging or something
to that effect. And believe itor not, I never even checked on
that. I just was like,oh, okay, well, you know,
(31:26):
we'd actually used a family planning caregiversomething rather like a geriatric advisor early
on when both parents were in thehospital. We knew a friend who was
a nurse and had a company thatwas helping families navigate this, and that
was a very worthy thing to spendmoney on at the beginning because we were
so disoriented. But again, that's, you know, assumes you've got some
(31:48):
extra money, and if anybody hasthat situation, it's worth sitting down and
saying this will orient you to somethingthat is very, very multi technacled.
Yeah, and one tough thing,those names that you mentioned, I believe
it's a bit different in Oregon here. Um, they're different all over the
place, so it might be byanother name. In Oregon, we have
(32:10):
our county offices for people, developmentaldisabilities and seniors, and just might be
like google your state and saying helpfor aging, family member, help for
disabled or differently abled or whatever youcall it, family member and see what
(32:30):
comes up. Yeah. Again,Something that would make all of this so
much easier is to have completely commonlanguage about all these kinds of things,
and one type of office that yougo for, ask for one type of
professional to help you this one.Yeah, I did not understand why I
couldn't. There's it's apples to mchairs, like comparing assisted living, independent
(32:55):
living, nursing home. Is itsomething that you pay the full thing up
front, you get some money backwhen they die. Is it's something you
rent a room and you pay monthly. None of that is standardized except for
nursing homes. Nursing homes have adefinition and usually require you to be in
need of hands on care at avery deep level, and most people don't
(33:20):
need that kind of hands on care, and so there's not actually a standardized
definition. When you go into aplace that provides let's say assisted living.
It may not provide what you thinkyou need. It might be that you're
renting a room in a lovely facility, but you're paying your charges go up
as your needs go up. Andit may be this independent living idea that
(33:43):
I see all over the place.It seems kind of like fancy hotel condo
complexes that might have some transit assistanceto get to grocery stores, or they
might have somebody who comes in yourhouse. It does your laundry and you're
cleaning. It's not like their organizedsocial activity. Maybe yeah right, but
they're not required to bring any care. And so that again for to orient
(34:06):
yourself, I think AARP has greatsome great resources. Another place I have
found really helpful is called Hilarity forCharity, and it's a group that Lauren
Miller Rogan, who is married toSeth Rogan. She helped create this after
caring after seeing her mom with earlyAlzheimers and her dad navigating that, and
(34:29):
so they realized at a certain pointthey were just trying to cheer people up
and raise a little money, andthey started throwing these comedy evenings and that's
grown now into a really fantastic nonprofit. So anybody who not so much for
the orientation, but if you're havingkind of an emotional distress, as I
certainly had doing this. They offerfree online support groups. That's amazing.
(34:53):
I would offer them in English.They offer them for widows, you know,
after you've lost somebody. It isextre ordinary. And they also offer
in some cases they will help payfor care for you know that they have
a rotating grant fund and if youhave able to write what your needs are,
you can be competitive for getting acertain number of months to kind of
(35:15):
get yourself back on your feet.So Hilarity for Charity or HFC is something
I encourage everyone to look into.I'm so admiring of them. I think
that they make it fun, it'scolorful, it's not depressing, and like
it's hard enough to do this job, but thinking of a somebody that has
your back and also realizes like thisoften happens to younger people in a quarter
(35:37):
the people caring for elders or underforty. Yeah, that's a very good
point. Another thing we don't realizebecause we don't talk about these things,
is this not just older people.No, No, and the average is
the every person doing this is aforty nine year old woman. That's when
(35:58):
it starts. And it was almostexactly that for me. Yeah, and
I love the approach with comedy.That's super fun. I'm going to check
it out. And I mean,one of the things that was frustrating for
me was that I would look forsupport groups or places to go where people
(36:19):
emotionally would understand me and maybe havesimilar experiences, and a lot of what
I found was either very very specificallyaround a certain condition that wasn't what my
daughter had, or it was religiousbased and that didn't work for me.
So it was pretty frustrating in thatsense that we do have a need for
(36:44):
more of these kind of resources thatare that are secular, and more if
they're if they're underwritten or they're supportedby a faith group that is treats people
as a secular This is something ourfaith group does as service, but we
we don't exclude it. We don'tuse a language and we don't and we
aren't not indoctrinating people. We're servingeveryone. And I think that's a big
(37:07):
thing too. And you know,it's often religiously oriented groups get involved because
they think of it as service toother humans. But I understand that,
and maybe with COVID and our increasingability with Zoom, a lot of this
stuff has become easier. You don'thave to drive across the city. I
remember sitting in a church parking alot, facing a cemetery and sobbing because
(37:27):
I'd gotten the date and time wrongfor caregivers, you know, social whatever
was a support group meeting I'd neverbeen to, and it was like the
only time I could get away,and it was I've gotten wrong. And
I just sat there and like brokedown, staring at a cemetery, thinking
like what has my life become?So there are other ways to do it,
But I know when I'd gone tosome of these, often it was
(37:50):
spouses of elder families with dementia,and so I felt like, well,
it's not my situation either. I'mnot eighties caring for a spouse who's eighty
five and has you know, andsince very seriously or Alzheimer's or whatever.
So I didn't feel quite like theright place either. So I think,
you know, maybe create your ownYeah, um, connect with hooks on
your you know, in your networks. Let's say I need buddies, Let's
(38:14):
meet once a month or once everytwo weeks, yeah, and check in.
Yeah, And um it sounds like, um, you have understood and
built for yourself and been able torely on these what they call informal supports
right for yourself. Um it's I'msitting here actually having a much better feeling
(38:39):
about that whole term than I haveit sometimes in the past, because,
um, you it's it's such abeautiful example of like, yeah, you
have a wide circle coming around you, and you're finding these things and people
that you connect with. And inmy case, like people would talk about
(39:02):
natural supports being me for my daughterand basically that how much I'm supposed to
continue giving, right. So Ireally came to kind of just developed this
perspective that no, no, no, we need universal access to like collective
(39:27):
public services, which we do.And at the same time, you're bringing
me back to how important the informalfriends and family and making these connections one
to one really are. And Ihave had that in my life as well,
and I think it's time to recognizethat more as well. You know,
thank you. I'm pretty blunt,or at least I am an external
processor. So at one point Iwas really falling apart and somebody had kind
(39:50):
of blown off a meeting where Ijust needed some help, and I was
I've had it, and a lotof people would go back and forth texting,
oh, well, what if Icome this day or what if I
bring this this? And I waslike, I can't. I just can't.
I'm over the I've broken everything.And I put on Facebook. I
was like, this is what Ineed. I need this, I need
this, I need this. Ineed people to show up when they say
I do not need to make fortext messages about this and I can't do
(40:15):
this anymore. And I probably lookedlike I was having a nervous breakdown because
I was, well. People steppedup so powerfully and they said, we
just didn't know. And so fourgirlfriends came over and made like a house
what they call it a like barnraising, took care of my dad's house
because nobody had for a while,even with a cleaner. It was like
(40:36):
things were broken. I didn't knowhow to fix them. I didn't know
what was wrong with them. Theybasically I bought a bunch of like you
know, rubber gloves you wear aclean with and we all took turns and
it was like a day of standingup the house, just the house alone.
Other people just dropped off meals andthey didn't ask me to return the
tupperware, like yeah, you know, I don't. I'm sorry, I'm
(40:59):
nice glass dishes, but no,don't. Don't give me something you need
back because I'm not going to keeptrack of it. But people really did
step up, and it was alsothe way for anybody doing this who wants
to be of help make it easyand don't you know, just say I'm
dropping off a cast role, I'mdropping off bread, eyebaked, dropping off
a bunch of soup. It'll beat your front door. They don't need
(41:22):
a lot of praise and time withyou. And I've now seen this with
friends whose spouses fed cancer. It'slike, you know, there's a sign
up sheet for meal drops and youknow whether or not somebody's in the mood
to have people sit and chat orjust drop it off and let it go.
And I feel like there's we cando. We can do more of
this, and I want to holdmyself to that too, because it did
(41:45):
help me quite a bit. It'stime for a break. Please stay right
here and we will be right back. Thank you for sticking around, we
continue our conversation. I've both receivedand given UM certainly to that kind of
meal exchange. UM. Interesting,interestingly enough, that was something that was
(42:05):
really helpful after our family experienced ourour house burning down. Was you know,
but yeah, it was just intense. But UM. One of the
things that that was pretty awesome isthere were groups of people around here that
UM were preparing and delivering meals andI was UM at first reluctant to take
(42:30):
them because I was going, youknow, we can buy our own and
and and go to the restaurant orwhatever. Like we're we're getting reimbursed from
insurance. We're actually pretty good,We're fine. And they were UM for
the rebuild anyway, and most ofwhat we lost, and and there were
so many other people like that Isaw. It was just like so much
(42:51):
harder hit. And they were like, no, no, no, it's
it's it's gonna you know, it'sif it helps you be able to take
the time that you need to addresssee issues you're going through, if it
helps you emotionally anything, you aremore than welcome to it. And it
was really was a big help becauseit was just one last thing to stop
and think about it all. Youknow, this food just showing up.
(43:15):
Yeah exactly, Yeah, you know, just because we're on and I have
a podcast. I also want toplug because my coming at this caregiving is
because it's for an elder and itmay not relate to your daughter's intellectual disability.
But I have to say, dementiawas a brand new world and I
never actually asked what it meant.And I didn't realize that until I interviewed
(43:36):
somebody who is an occupational therapist fora lot of people with dementia, and
it didn't I didn't even know howdementia can impact you physically, can change
balance, it can change motor skills. So in terms of like, I
have to plug the podcast because I'vebeen so supported by Texas Public Radio and
NPR one, which is where youcan find it. NPR one app you
(43:57):
can look for twenty four seven,a podcast about caregiving. I've had some
Really you got there before I did. I wanted that plug in there,
Yes, right to tell me becausethe first season we did was really just
my diaries and conversations with my dador other people to tell me how to
do stuff. One was we hadto give my dad a shave once when
he was in the hospital and noone could do that, and it was
(44:19):
so complicated, it was really hard. And I never thought about doing something
like that. And then I foundthis razor that Gillette had made for exactly
that purpose, and I called theengineer and said, like, what made
you think of doing this? Andwhy is that different? Why is it
different given someone else a shave?How does that work? I never thought
about that. So those are thekind of conversations I had. How do
(44:42):
you talk about dying? That wasa hard one. How do you talk
about the fact that your friends oftenkind of I wouldn't say they abandoned you,
but certainly get a lot thinner onthe ground when you can't go meet
them downtown for dinner, or youcan't play scrabble as well as you used
to. All right, dementia.You know some of the people I heard
from millennials Ronald Reagan's daughter about caringfor her dad and caring for family caregivers
(45:07):
like yourself. She ran caregiving supportgroups for many years after her dad died
of Alzheimer's. And so if it'snot so much to go rab ra my
podcast, but I hope that someof those episodes are useful to people if
they are in the same situation,just to see how other people are dealing
with it, and they absolutely willbe I was so delighted to find your
(45:29):
podcast and it is so well done, and it's with the same directness and
honesty that you're expressing here, andI really appreciate that well thanks to great
producers and really terrific people that supportedit. The final season, I was
trying to figure out, like,why don't I know about this in literature?
(45:52):
Is there like a famous literary characterwho's a caregiver? No, famous
famous literary characters are the heroes,They're not the people taking care of And
I thought, where can I findmodels that do this so I know how
to do this? Like where doI see this in public culture? I
don't, So I kind of wentaround looking for movies and TV shows of
books and I found a few ofthem, and one was Walter Mosley,
(46:16):
who was a very well known andextremely accomplished novelist, and he'd done a
book about a character who had wasalmost a detective who at Alzheimer's. I
actually had a fantastic conversation with theson of writer Gabriel Garcia Marquez about caring
for his parents at the final chaptersof their lives, and his dad's knowledge
(46:38):
was about memory. I mean that'swhat his father wrote about. Yeah,
that was that was fascinating, andand again like it's so honest and we
could feel like as a listener,I felt like, I'm really getting to
know each of you there. Yeah, so whatever is useful somebody. I'm
(47:04):
not saying anybody needs to listen toall of it, but I there were
things I never thought to ask about. Um, even a minister who has
Alzheimer's herself, who's now talking tome about how to be treated as a
person with Alzheimers, how does shewant people to respond to her? What
is she hoping for? Look atit from the point of view of the
elder person or the person with thedisability being cared for. And I didn't
(47:27):
even respond to the word caregiver.It felt like a very foreign I didn't
want to call myself that Because Idid, I thought it sounded kind of
sterile and like I was also praisingmyself too much, like oh, I'm
gonna caregiver. But essentially that's whathappened, and it's you know, It's
just something you don't really think ofyourself as, but when it takes up
that much of your life, itbecomes the centerpiece. The whole question of
(47:52):
who is a caregiver is actually reallyhuge for me as a mother, right,
I've had so many conversations. Evenas my daughter gets to be a
teenager and a young adult who's stillrequiring full on care. She cannot safely
be left alone at any time.And people will look at me when I
(48:13):
start to describe what I do withmy time, because it's, you know,
the first thing when you meet anew person, what do you do?
Right? What's your job? Andpeople if I say I am a
caregiver for my daughter, they willcome back with a lot of really kind
(48:34):
of bizarre comments actually about really,well, this is just what mothers do.
No, you're not a caregiver,you're a mother, or they'll just
look really uncomfortable and kind of likereally really and you get paid for that,
you know, right? And youcan be paid. I mean in
some cases it is possible to getsome government support as a family caregiver.
(48:57):
Yeah, but it takes a lotof work to get that set up and
it doesn't always it certainly doesn't coverall the bills. It's not available,
right, it's low pay, it'snot available everywhere across the United States,
and it really depends a lot onthe specifics of the needs of the person
that's receiving care. There's all theselittle boxes that social services divide people up
(49:19):
into, and you have to qualifyfor one or the other. And you
know, I just wanted to makea comment or observation you and I'm so
sorry you've lost your house in wildfires. Yeah, yeah, And I thought
about this as a framework for thinkingabout care. If your house was on
fire, what would you grab?You grab the people you loved, Right,
Well, why do we treat andpay people who deal only with you
(49:42):
know, intellectual property law or Idon't know, cyber security or cyber money
whatever that's called cyber currency. Wereward them so magnificently, and yet the
things we care about most are thepeople we love. So why isn't that
rewarded better? Why aren't we justtaking care of the people who do the
care. That seems to me likea really weird paradox that you would not
(50:08):
go save your job if your housewere burning, Yeah, you save your
family it's so true, and itwas such it was so interesting to have
that experience after all of the yearsof things that we had already been through
with my daughter, because people cameout of the woodwork really really sweet and
kind and generous with us after thefire, like lots of people, just
(50:34):
so many offers of help and whatcan we do? And everyone was there,
it seemed like. And yet myloss of income over all those years,
which created a situation at a certainpoint where I was really distressed and
I, you know, you wereyour mention of the term demented, like
I felt that way at a certainpoint similarly, and I it was just
(51:00):
so very frustrating, and I wouldkind of have breakdowns sometimes in front of
people, and their responses would betumbleweeds or would be, oh, you
just you need to go, youknow, do some therapy, You need
to go take a break, andit's like, you know, who is
(51:22):
going to watch? Are you volunteeringto care for my daughter while I do
that? And it just it wassuch a different response. And yet the
magnitude of what what we lost orgave up in either case is similar or
(51:45):
it's more because of the caregiving really, you know, even for elder caregivers,
for families members to take caremeilders.I think it's women and they lose.
I think the number I saw wasa round three hundred and fifty thousand
dollars in a lifetime of earning becauseyou're losing contributions to retire, you're losing
income that would go into your SocialSecurity formulation, you're losing the basic income,
(52:06):
you're losing off in health insurance.There's so many ways this becomes almost
always a compounded problem for women.And again that's you know, I swear
if men had this and they werethe full time person in charge, we
would solve it a lot faster.Yeah. I also want to make a
shout out to people who are notwhite women, middle aged, like I
(52:27):
suspect you and I are, becausethat's who was writing memoirs about this,
that's who was getting publishing contracts whenI was starting to look at this,
and it's dementia elder. You know, being an aging person who's trail doesn't
It doesn't choose anybody. It happensin every family. So I was really
trying to bring in Latina voices andblack voices and Asian voices because cultural expectations
(52:52):
also play a large role. AndI don't know what some other cultural expectations
are, but I had to ask, like, did your parents at you?
And you know, in two casespeople said, yeah, I'm the
youngest daughter in a Latina family,and my dad's very has great expectations that
I stay home and care for himand care for my mother. Yeah.
And I don't have statistically like numbersat my fingertips, but I know that
(53:15):
loss of income from caregiving more stronglyimpacts women who are Latina or black or
other kinds of identities. And Irecognize that I'm relatively privileged in actuality compared
(53:36):
to a lot of people. Isthere anything else you think listeners can use
besides a at a boy like wayto go what you're doing? It helped
me for somebody to say, youknow what your job is to rest?
That's awesome. Your job is torest, You're doing awesome. Your job
is to ressed, like you don'tknow how hard what you're doing is.
And I was like I needed otherpeople to see it invalidated. And I
(54:00):
knew it was a big deal,but I felt like, why isn't I
don't know that I knew how deepa complex issue. It was, and
and I don't want I don't evenwant to talk about my parents that way
because I don't want to sound likethey were causing distress. That was the
last thing they want. It's justhow it rolled out. And it's not
the parents that are causing distress.It's the it's the care needs exists in
(54:24):
a system that doesn't provide for them. It's it's like we're one of the
few countries that don't. Yeah,if you needed to get thirty miles to
a job, you wouldn't say,oh, you know, um, the
car has a problem. You wouldsay, like there's no road right right,
right, right, and that's aproblem. Yeah, thank you so
(54:46):
much. It's been really lovely talkingto you. And I hope this is
helpful to people. And congrats toyou for like putting this out and to
get through losing a house in awildfire and still doing this and being a
full time a caregiver your daughter.And that's not just a mom's job.
It's a family and it's a socialthing and we can do better. That's
my hope is that we all askwhen we vote, look at your legislator,
(55:10):
ask what they've done on behalf offamily caregivers and just checked that record
and hold them to it. Wehave power, we just don't know how
to organize it. And that's whereI'm really want to make that my next
goal. Love it, love it, love it, love it. I'm
with you, Okay, thank you. Hope you have a great afternoon.
Thank you.
Welcome to Love doesn't pay the bills. Where we make visible the often unseen
experience of family caregiving. I'm LisaChuti. I am a family caregiver.
Kitty Eisley is with us today.Kitty is an executive producer for podcasts with
Texas Public Radio and MPR. Shehosts twenty four seven, a podcast about
caregiving, which came out of personalexperience caring for her dad. Welcome Kitty,
(00:27):
Thanks so much for having me,Kitty. What surprised you the most
about becoming a caregiver? To justjump into it? Jumping into it?
How unprepared I was because I didn'tknow what I was going to need to
know. And I think for manypeople, and I actually before I even
dance with I just want to startfor your listeners. There are fifty million
(00:51):
of us in America doing this.Fifty million people, and you don't even
know that because it's all happening athome or in an institution maybe, but
for most people it's caregiving in someform, for unpaid for somebody over fifty.
So I became one of those peopleunexpectedly. It all started in twenty
thirteen when both my parents had badfalls and were in the er or ICU
(01:15):
and then had to go to stepdown rehab facilities. That's kind of what
people do if you're in the hospitalas an older person, you often get
dismissed and sent to usually a nursinghome for a short stay to get your
balance or work on your whatever itis that you've broken or had a problem
with. But when both of themhad this happen within a month, I
suddenly realized, like, oh mygod, my parents aren't even that old.
(01:38):
I might have to step up ina way I never imagined. All
of a sudden, it was crisistime. And at the time I was
at NPR and I was able totake advantage of Family and Medical Leave Act,
and you can just for people toknow you don't have to use it
all at once. But I hada couple of weeks where I just said,
I have some banked sick leave.I'm going to use it so I
(02:01):
can stand up what's going on withmy parents, And I thought I had
gone to another land. It wasso foreign that when this sort of calmed
down and resolved, I went toa movie with a friend and I felt
like I was culture shocked, likeI hadn't been in a normal world in
a month, I can relate tothat, right, Yeah, And I
(02:22):
think for a lot of people becausethis usually comes on you know, it
may happen gradually, but it alsohappens often in a crisis, earn emergency,
usually a fall, an illness,you know, some disruption that becomes
an instant change of life, changeof status. Everything you are familiar with
suddenly has to be on the backburner because your immediate problem is an elder.
(02:45):
In my case it was an elder, I know in your case you
care for a child. The bigsurprise was how little I knew about how
our systems work, how untransparent mostof it is because it's not centralized.
There's not a national database. There'scertainly national agencies, but every state has
its own systems. We as anation do not treat care as something of
(03:10):
a priority. And it's the samething for childcare, and historically that's always
been a woman's job and an unpaidone, and the same thing goes for
caring for elders. And I personallyfeel very strongly that if you have a
society, the job of having asociety is to help you when you can't
(03:30):
help yourself. And that's because youhave an infant who can't who needs help,
or you are an older person whoneeds help. But we don't have
those structures. We have them verykind of. There are some, but
they're not sufficient. And I don'tfeel like we've actually said to ourselves this
(03:50):
isn't only one person's job. It'snot just one family member that can handle
this. And there are a lotof reasons for that, but I'll leave
it at that for now. Yeah, I very much relate and a ligne
with everything you just said. Andthat's really what I and we are all
about at Love Doesn't Pay the Bills, is is bringing these experiences of caregiving
(04:15):
that in some sense are really universalpublic because they're so kept behind closed doors
and treated as if there's something privateover there, even though everybody's going through
them. And we have needs atdifferent times that really can only be met
(04:36):
collectively with a large effort together.And I'm glad you're doing the podcast because
again and the more notice we cangive to this, the idea that we
have a systemic solution, systemic effortsto support families. Yeah, it's something
we don't. I mean, youinternalize so much of this, like oh,
I should be able to handle this. I should be able to get
(04:58):
this all set up. And thenwhen you realize isn't just on me.
One thing I did that was surprisingwas, you know, I've had friends
who've managed newborns and toddlers, andit took me a while to realize,
like my dad at one hundred andeighty pounds, is a very different body
to care for than a toad.So even doing the physical helping someone lift
(05:20):
or move or stand, or keepingthem balanced or getting them off the floor
if they fall, all of thesethings are exponentially harder and more just.
They're more different than I thought,like caring for a kid. Absolutely,
even different individual people can be sovery different, even if they have the
(05:44):
same same diagnosis. And you know, my experience was primarily with my daughter,
who obviously started out as a tinybaby, and now she is an
adult and it is a lot different. However, I had all those years
to grow slowly with her, andI took a job for a little while
in a rehab facility like you mentioned, where I was assisting ots and pets
(06:09):
and speech therapists generally after people hadhad a surgery or something like that,
and I found that I actually wasnot very good at that, and I
am very awesome with my particular daughterafter all these years of knowing her,
Whereas people come in to work withher and it takes a good solid six
(06:32):
months or so for them to developa real ease with her and rapport with
her, and I know a lotof things about her that make it easier.
God bless you for trying, andgodless the ots occupational therapist, physical
therapist, speech therapist. I cannotsay enough about the people that I encountered
who went into it for the rightreasons and we're doing their best to care
(06:54):
for in our case, for elders, it's a serious commitment. It's hard,
it's not necessary early lauded in oursociety, and it's deeply underpaid.
Absolutely, that's I agree a thousandpercent with all of that. And so
we could talk a little further aboutthat under payment or how would you change
(07:16):
the public systems from your experience ifyou could, what kind of solutions would
you specifically want to see. Iwould like us to be able to pay
for and get much more help forlong term care and long term care,
I mean generally when you're really gettingold and you don't have the facilities or
(07:38):
the capabilities to care for yourself asyou had once. Lots of people get
old and have some short memory loss, or might have some physical complexities,
but that doesn't mean they're not ableto live independently. We have medicare as
what are your previous guests talked about. Medicare is basically your health insurance over
sixty five or sixty seven, andit only pays for your care if something
(08:01):
goes wrong for a brief period oftime after say a hospitalization. It's limited,
so there is no money federally statecity to care for you if you
need help bathing, if you needhelp getting out of bed, if you
need help putting on your shoes,if you can't cook for yourself because you
can't balance simply to move a panwater over to the sink, if you
(08:26):
are no longer able to drive.There are certainly things for people who need
assistance getting places, But the ideathat we all have to somehow navigate this
period in which many of our ownfaculties are diminished all by ourselves is crazy.
And there are also some other factorsthat I've seen and that I'd like
(08:48):
us to recognize as we think abouta solution. People are living with fifty
percent longer than at the turn ofthe twentieth century, something like fifty it
might be a little longer. Somany, many, many Americans live a
lot longer with much more complex conditionsand challenges, things that would have killed
them before. So we're living awhole lot longer, often in less robust
(09:11):
health. We have far fewer childrenon average, so there are far fewer
family members who can assist in thatcare. Certainly my family, like go
back to generations and the great grandparentshad five or six kids, and there
was always somebody that they lived alot closer, which is another factor.
People often live at great distance fromnuclear family, so we are living longer.
(09:35):
We have fewer family members to involvein that care. We often live
at great distance, and we actuallydon't have what we've counted on in the
past, often the woman at home. That's true for some families. That's
always been an issue where family membershad to all work. But historically we've
treated women as the free labor andthat this is something that they take care
(09:58):
of on their own, and that'sjust not available anymore. So if we
have all these factors, kind ofadding up. What can the government help
us with? Well, it couldhelp pay for and train and supervise some
daytime care or some nighttime care.It can fund much, much, much
(10:18):
more dramatically, really well staffed andwell maintained nursing homes. Many many,
many people can't get even a bedin a nursing home. When there are
medicacas, there are in enough beds, they're on enough places, especially if
you're in a more remote rural place. I'm in a city, so there's
a lot more opportunity. The morefacilities and more people to hire. We're
(10:39):
heading into a moment with far fewerpeople who want to do caregiving. And
we saw that after COVID. DuringCOVID that the people were being put at
risk. Caregivers had much more likelyrisk because they were usually in an institution
with lots of older people, maybenot as well maintained. And they said,
you know, for fifteen bucks anhour, I can go to Target,
(11:01):
I go to Potli. I mean, the ald in my neighborhood is
hiring it like eighteen bucks an hour. And I don't have to lift or
bathe older people. I don't haveto physically put myself at risk and many
of the people doing it have nohealth insurance and they get injured. So
I'm making a lot of answers.That really should be one answer. We
need to ask and challenge ourselves tosay to government, we need better money,
(11:26):
we need more caregivers hired and reallypaid. Well. This is very
hard stuff and they're not going todo it if better jobs are available.
And we need to really value ourelders. In my position, I feel
like we've actually diminished them. Andyou don't see them in social media whatever.
How many times do you see anolder face. It's like we don't
really want to acknowledge that we havea harder time as very aged people,
(11:52):
and I think we can do abetter job. These are I mean,
I liked my dad, so Idid it. You know, I genuinely
cared. I didn't want to seehim in a hard situation. But not
everybody can pick up and move andI wasn't expecting to stay so long.
Yeah, and you never do know. Um, when somebody at the beginning
(12:15):
of their experience requiring care, youreally there's no way of knowing how an
individual's story will go. Yeah,it could be months, could be years,
could be exactly and I had noidea and who surprise. Um So
in my case, I thought itmight be you know, six months basically,
um my dad, you know,lucky for us, was able got
(12:37):
better, was able to live anotherthree years. But I didn't know I
was putting my life on hold.And COVID came in at the same time,
so I was able to the firstyear. I just didn't work that
much and I was completely out ofmy mind. I really really lost it.
And we were able to hire someshort term care, some part time
(12:58):
care, and then that went tofull time daycare, you know, full
time in the house the second yearand the third year. But I didn't
see that coming. Yeah, AndI think that that's part of why it's
so important to be talking about thesethings, so that people aren't surprised by
these sorts of events and nowhere toturn and have something set up that everyone
(13:22):
knows something's available and where to go, and even some more universal language around
some of these things. That's agreat idea, more universal language, like
no one wants to talk about theirwill or their you know, well this
let me raise an example, butI think was surprising to me my parents
(13:43):
had done their will and their advanceddirectives and their long term planning for like
the very end. So we knewall that stuff, but that didn't account
for those years before the very end, and it just kind of crept up
on them faster than they expected.And so we hadn't as a family talked
about it. We hadn't. Noone had done anything. My mom had
maybe looked at some assistant living places, but they hadn't moved that. You
(14:07):
know, their house was pretty onelevel and not too hard to work in,
but at a certain point we couldnot get a wheelchair into any bathroom.
Yeah, that's a big deal.It is. And until you have
a close family member or you yourselfuse a wheelchair, it's really most people
(14:30):
don't notice how few places really arewheelchair accessible and wheelchair friendly. I actually
was in a situation where I hada house rebuilt after the wildfire that happened
here. Oh boy, Aaron Oreganand we were needing to get this done
quick in a situation where there wereso many other people also needing to rebuild,
(14:54):
and the services were in high demand, and we were looking at a
company that we ended up using,which had pre designed floor plans. Well,
those predesigned floor plans are not ADA, and it made me super sad
to not be able to build theADA plan unless we spent more money.
But she seems crazy that you knowthat any company would be putting out plans
(15:16):
in aren't ADA compliant. Yeah,and so it you know, it's it's
it strikes me as something that's somuch easier to have universal design from the
beginning. Then make it this exceptionalthing that people when they suddenly need it,
when something has happened, when they'rein the middle of probably a traumatic
(15:37):
event happened to be able to tostart to have to start to address those
kinds of things exactly. And Ijust add to that, like I had
to go to a doctor's visit yesterdayor get a blood lab or something,
and I had to take my dadto a lot of those, and so
I was the one, you know, getting him from the parking lot into
(16:00):
the building upstairs to the doctor checkedin and all that. When I went
to check in yesterday, there's acomputer screen they check you in on and
it's the typeface is tiny, andI wear glasses, but I'm not you
know, I'm not feeble at thatrate. And I was like I can
barely see this, and it's awkwardto try to take my glasses off and
(16:21):
put my stuff down and type intothis thing. And it's just thinking by
any designer whoever designed the system thatis the automatic interface for people. My
dad could never have navigated that.And it wasn't that he had a problem.
It's that it's too tiny and tooconfusing. And we saw that consistently.
People would say, why don't youjust get your dad an uber app?
(16:41):
Like an older person, I mean, even though he had, I
would say, it doesn't work formost people. And so it's I think
we asked I think for me,and you asked earlier. What surprised me?
It kind of made me mad andI wasn't able to be constructive about
it. But I was like,how come everything is designed by a twenty
two year old guy that I hadto interface with in order to take care
(17:04):
of my dad. And let's justhave some of those great designers be around
their grandparents and they'll see, like, this is the way you can be
incredibly positive and constructive and inclusive foranybody who needs it. And thinking as
you know, computer menus or checkins or even trying to book an uber
(17:25):
or a lift. I would booka taxi if I could, just with
the phone. Most seniors I knew, you know, they have cell phones,
but it doesn't take much to getyou into a tangle. And I
think I found when you asked aboutsurprising things, I did find that a
lot of the quote solutions were gearedtowards somebody under forty. And it made
(17:47):
sense logically, But all the complexitiesof memory loss or following not a dementia
in my dad's case came from heartfailure, so oxygen to the brain and
vascular dementia meant that sometimes sequencing thingswas difficult. So doing things in an
order or maybe going backwards became harderfor him. Yeah, and that's things
(18:11):
like you know, making an orderor remembering your password and if it doesn't
if you type it wrong, notgetting kicked out. A lot of those
things were really basic, and Ifelt like, gosh, can't we How
do we make a better system first, how do we pay for it better?
How do we have enough caregivers?And how do we design? Like
you said, universal things that welcomeeveryone, that'll make you feel bad because
(18:34):
you can't do them right. Yeah, And universal design is often if it's
done that way from the beginning,isn't really any more expensive. It's when
we have to go back and makechanges to a house has already been built,
or a website that's already been designedor whatever, that it gets expensive
(18:56):
and challenging. So universal design justmakes all the sense in the world to
start with the idea that every personor as many people as possible, need
to be able to use something that'sput in front of the public anyway.
Yeah, even like grocery orders thateveryone started doing during COVID, you know,
ordering your groceries online. That isn'talways the most logical easy thing,
(19:19):
even though it should be. Yeah, that's something that theoretically is super simple,
right, theoretically, it's time fora break. Please stay right here
and we will be right back.Thank you for sticking around. We continue
our conversation. So we've kind ofwe've gotten into a lot of the challenges
(19:44):
that you faced, some of thethings that might have helped you meet those
challenges. Would you add any anythingelse that helped you with meeting the challenges
you faced. Yes, a coupleof things. And this might work for
your listeners, and I hope it'suseful. My mom died at seventy seven.
(20:04):
She's a lot of complicated health issues, and we knew as At some
point, I think when the hippolaws changed about health privacy, I had
to sign off on some documents sothat I could be informed if anything went
wrong. And so I went withmy parents to a lawyer's office and we
signed all this stuff. I didknow that they had a lawyer that they'd
(20:25):
drawn up their will with. Iknew who it was. I knew where
the wills were and where an electroniccopy was right there. You're ahead of
a lot of families, right,I mean, I was really grateful to
my mom for having organized that stuff, really organized it. At the same
time, they had a financial advisor, and I met him and I knew
who he was. And when mymom died, he called and said,
(20:48):
listen, let's have a meeting withyou and your sister and your dad.
Very small families. We need toput a new person as power of attorney
for your dad. Before it wasyour mom. Now one of you needs
to be health power of attorney overhealth legal decision making, should he have
a stroke or should something go reallywrong. Well, something went really wrong
the next year and I had powerof attorney and I met with the financial
(21:10):
advisor and Dad was in the hospitalfor three weeks in the ICU with you
know, we almost lost him,and as he was exiting, we actually
decided to have him go to afacility where we hoped he might stay.
Well, that meant a pretty bigupfront seat, and I was able to
call his financial advisor and say,listen, you know he's in the hospital.
(21:30):
You know I have power of attorney. Can you help us? Is
there money available that we confront thisright now? And can you make that
transfer happen now? Luckily they hadthe money saved. I think my sister
ended up paying for it, butgot reimbursed quickly. But it was that
kind of thankful to my parents thatI had been sort of just on the
(21:52):
off chance, introduced to the factthat they had a lawyer and they had
a financial advisor, and I hadthose numbers glowing endorsement for everyone to do
their end of life planning right.I mean, it just it was a
kindness of the on their part.It was truly a gift. And I
would I mean I did my willabout eight years ago because I just was
I was going to be away fora year, and I thought, let's
(22:14):
just get this all done and makesure my sister has it, my doctor
has it. And even now I'mhaving my house painted and fixed. It's
in a safety box in the houseand everyone knows where it is that needs
to know with the deeds to theproperty I own. And I thought,
this is the best thing that wasdone for me, So how can I
make that. I so am gratefulthat they did that. Yeah. Actually
(22:40):
similar where my dad hasn't got thereyet, but I know that he's prepared
and he has shown us, provideddocuments for my brothers and I and everything's
super clear, and it just is. It is a real huge sense of
relief of like, Okay, ina difficult situation, it's going to be
already challenging no matter what. Someof those things are not additional worries.
(23:03):
They're they're off the table and takencare of. In fact, Yeah,
like they had a leak in theirhouse when he my dad was in the
hospital and we had to have somereal serious work done in their basement and
I was already power of attorney,so I could go to the insurance and
say, hey, this is thedeal, here's the power of attorney documents.
I'm uploading them. You know,I have the same insurance company.
(23:25):
But that again was just a hugeIt made things easier. Another thing that's
really simple. I knew my parentsneighbors. They've been in the same house
for fifty years, and the neighborswere lovely on a small call to sex,
so I had phone. I've actuallygotten their phone numbers and emails kind
of the times I visit, andI knew my parents liked these certain neighbors,
and I was like, you know, we should exchange emails just in
(23:47):
case, you know, something happensat the house. You notice, that
was a big help. It's aquote I remember hearing more than one place
that you know, pretty much thebest thing you can do for your safety
is to be known. And no, your neighbors are people that are physically
nearby you. Yeah, Like ifyou notice the newspapers piling up, Dad
comes out and gets it every morning. So if you're not seeing them picked
(24:11):
up, call me. Small thing. But you know, if somebody lives
in a condo or an apartment building, it's ask who their friends are and
get those friends numbers, because usuallysomebody's in touch, especially for people who
are at long distance from their families. I was pretty much in the same
region, you know. They werein the suburbs. I was in the
city, but pretty close. AndI find most people are pretty pretty willing
(24:34):
to be helpers. And it happenedin my own building, my apartment building
where I live, you know,a much older woman got stuck in the
bathtub overnight, had blacked out,and her kids were pounding on the door.
And I opened my door and say, can I help you, like
what's happening? And they came inand used the phone. And I got
to know her and I would justoccasionally pop down and sit with her.
(24:56):
She would make a cake or somethingor find a treat, and I swear
I learned a lot from her kidsand from her. And I was like,
people did that from my grandmother,and I just thought, pay it
forward. I know my grandmother washelped by younger people who kind of made
a point of coming by and sayinghi. And I didn't do it a
lot, but I did it,and I stayed in touch with the family
(25:17):
even after she passed. And Ifelt like someone has done that for my
family, so small way to justsay thank you, and anybody who is
listening, who has an elder neighboror something. It's just the smallest thing,
but people really do appreciate being checkedon, or having somebody drop off
some brownies or all the stuff thatjust knits society. That is what civilization
(25:40):
is. Yeah, I think that'sa really good point. And I mean
I can think of a number oflots of times that my family have been
helped in big and small ways aswe cared for my daughter, and my
parents now are all having different thingsgoing on, and I asked, what
your daughter's situation is. Yeah,she has significant disabilities and including intellectual disability,
(26:07):
and so she was born with asmall cerebellum and something going on beyond
that that's never been really explicitly diagnosed, but it's just intellectual disability because she
didn't have the normal developmental path asa child, and most likely some kind
(26:30):
of stroke in judo or something likethat. And she's just she's super charming
and delightful and fun and she hasways of communicating pretty darn clearly. But
she does have limited language in thesense that you and I are talking right
now, more like word approximations,and we rely a lot on body language
(26:56):
and just act. She always doeshave a caregiver with her who knows her
very well. Part of what wedo for her is like translating with people
that know her less well. We'veused AC devices over the years and she
never really um took to them nearlyas much as using her her physical voice
(27:18):
in her body. Yeah um soum. Yeah. And she has challenges
with her balance and coordination and motorplanning and like if she can stand with
assistance, for example, but youwould never know when she might throw herself
(27:40):
off balance, and she is afall risk. Um, it's kind of
amazing that she's had a few faultsin her life with significant repercussions that she
has. She's had really none withwith with any kind of big repercussions.
And balls are a big deal.Elders are a very big yes. Yeah.
(28:00):
And banging your head is a bigdeal. Yeah, And as we
get older it becomes more and moreso because we bounced back from anything less
less quickly assly. Yeah. Sowhat else can I tell listeners? I
mean, what do you think people, especially with an elder, Because in
my case, I sort of thoughtof it as becoming a parent to my
(28:21):
parent and the podcast initially was calledDemented because that's how I felt. I
felt like I was losing my mind. And I also felt that the systems
in our country are broken, theydon't exist. It's crazy that we expect
this to be done by any averageperson who has no training as a nurse
or a physical caregiver or any ofthat. And we came to twenty four
(28:45):
seven, a podcast about caregiving becausesome folks felt like it was didn't sit
right with them. But I stillfelt like this is nuts, and it
really made me very kind of deeplydepressed and confused and taken a lot of
work to kind of compas asked that. And yet it's not what my parents
would want for me. They wouldn'twant me to feel, you know,
(29:06):
obliged to them. It just kindof the situation just sort of rolled out
that way. And then when COVIDhit there was just couldn't make it a
change. Yeah, COVID would complicatethings. Um. It did does complicate
things. UM. And I canso relate to what you're saying, and
it's it's you know, I thinkit's pretty taboo in a lot of circles.
(29:29):
When I got to points um becausewhen my daughter was, um,
you know, like twelve to sixteenor eighteen years old in that in that
range, and um, other familieswhere their kids had grown up at the
same time, the parents were becomingmuch more their time and energy for you
(29:53):
up again, they weren't really devotingtime and energy to parenting in nearly the
same way. And yet here Iwas still physically assisting my daughter to have
baths, still, you know,preparing all of her meals, still physically
helping her to move or get fromplace to place, and managing all of
her appointments and all of her anythingshe did socially. And also really really
(30:19):
struggling with financial financial with our financialsituation over all those years. But it
got to the point where I justreally started to feel like I've turned over
every stone. I spent a lotof years like seeking situations where I could
go contribute to that income, youknow, and my daughters still be well
(30:42):
cared for. And I am collegeeducated, I'm pretty good at researching things,
and I wasn't finding a way toget out there, like I'm a
journalist, I should be able tofigure this out, Like I know who
to call, right, I knowenough to call somebody and say what questions
should I be asking? Yeah,and what would you call? I mean,
I wasn't smart about like who tocall. I just knew enough to
(31:02):
call someone to say, there's whereyou start and this is what you need
to know find out. Yeah,we don't really have a good straightforward place
to do that. Although Brandy Listenerdealing with an elder, I would encourage
them to check their state. It'scalled the Area Association on Aging or something
to that effect. And believe itor not, I never even checked on
that. I just was like,oh, okay, well, you know,
(31:26):
we'd actually used a family planning caregiversomething rather like a geriatric advisor early
on when both parents were in thehospital. We knew a friend who was
a nurse and had a company thatwas helping families navigate this, and that
was a very worthy thing to spendmoney on at the beginning because we were
so disoriented. But again, that's, you know, assumes you've got some
(31:48):
extra money, and if anybody hasthat situation, it's worth sitting down and
saying this will orient you to somethingthat is very, very multi technacled.
Yeah, and one tough thing,those names that you mentioned, I believe
it's a bit different in Oregon here. Um, they're different all over the
place, so it might be byanother name. In Oregon, we have
(32:10):
our county offices for people, developmentaldisabilities and seniors, and just might be
like google your state and saying helpfor aging, family member, help for
disabled or differently abled or whatever youcall it, family member and see what
(32:30):
comes up. Yeah. Again,Something that would make all of this so
much easier is to have completely commonlanguage about all these kinds of things,
and one type of office that yougo for, ask for one type of
professional to help you this one.Yeah, I did not understand why I
couldn't. There's it's apples to mchairs, like comparing assisted living, independent
(32:55):
living, nursing home. Is itsomething that you pay the full thing up
front, you get some money backwhen they die. Is it's something you
rent a room and you pay monthly. None of that is standardized except for
nursing homes. Nursing homes have adefinition and usually require you to be in
need of hands on care at avery deep level, and most people don't
(33:20):
need that kind of hands on care, and so there's not actually a standardized
definition. When you go into aplace that provides let's say assisted living.
It may not provide what you thinkyou need. It might be that you're
renting a room in a lovely facility, but you're paying your charges go up
as your needs go up. Andit may be this independent living idea that
(33:43):
I see all over the place.It seems kind of like fancy hotel condo
complexes that might have some transit assistanceto get to grocery stores, or they
might have somebody who comes in yourhouse. It does your laundry and you're
cleaning. It's not like their organizedsocial activity. Maybe yeah right, but
they're not required to bring any care. And so that again for to orient
(34:06):
yourself, I think AARP has greatsome great resources. Another place I have
found really helpful is called Hilarity forCharity, and it's a group that Lauren
Miller Rogan, who is married toSeth Rogan. She helped create this after
caring after seeing her mom with earlyAlzheimers and her dad navigating that, and
(34:29):
so they realized at a certain pointthey were just trying to cheer people up
and raise a little money, andthey started throwing these comedy evenings and that's
grown now into a really fantastic nonprofit. So anybody who not so much for
the orientation, but if you're havingkind of an emotional distress, as I
certainly had doing this. They offerfree online support groups. That's amazing.
(34:53):
I would offer them in English.They offer them for widows, you know,
after you've lost somebody. It isextre ordinary. And they also offer
in some cases they will help payfor care for you know that they have
a rotating grant fund and if youhave able to write what your needs are,
you can be competitive for getting acertain number of months to kind of
(35:15):
get yourself back on your feet.So Hilarity for Charity or HFC is something
I encourage everyone to look into.I'm so admiring of them. I think
that they make it fun, it'scolorful, it's not depressing, and like
it's hard enough to do this job, but thinking of a somebody that has
your back and also realizes like thisoften happens to younger people in a quarter
(35:37):
the people caring for elders or underforty. Yeah, that's a very good
point. Another thing we don't realizebecause we don't talk about these things,
is this not just older people.No, No, and the average is
the every person doing this is aforty nine year old woman. That's when
(35:58):
it starts. And it was almostexactly that for me. Yeah, and
I love the approach with comedy.That's super fun. I'm going to check
it out. And I mean,one of the things that was frustrating for
me was that I would look forsupport groups or places to go where people
(36:19):
emotionally would understand me and maybe havesimilar experiences, and a lot of what
I found was either very very specificallyaround a certain condition that wasn't what my
daughter had, or it was religiousbased and that didn't work for me.
So it was pretty frustrating in thatsense that we do have a need for
(36:44):
more of these kind of resources thatare that are secular, and more if
they're if they're underwritten or they're supportedby a faith group that is treats people
as a secular This is something ourfaith group does as service, but we
we don't exclude it. We don'tuse a language and we don't and we
aren't not indoctrinating people. We're servingeveryone. And I think that's a big
(37:07):
thing too. And you know,it's often religiously oriented groups get involved because
they think of it as service toother humans. But I understand that,
and maybe with COVID and our increasingability with Zoom, a lot of this
stuff has become easier. You don'thave to drive across the city. I
remember sitting in a church parking alot, facing a cemetery and sobbing because
(37:27):
I'd gotten the date and time wrongfor caregivers, you know, social whatever
was a support group meeting I'd neverbeen to, and it was like the
only time I could get away,and it was I've gotten wrong. And
I just sat there and like brokedown, staring at a cemetery, thinking
like what has my life become?So there are other ways to do it,
But I know when I'd gone tosome of these, often it was
(37:50):
spouses of elder families with dementia,and so I felt like, well,
it's not my situation either. I'mnot eighties caring for a spouse who's eighty
five and has you know, andsince very seriously or Alzheimer's or whatever.
So I didn't feel quite like theright place either. So I think,
you know, maybe create your ownYeah, um, connect with hooks on
your you know, in your networks. Let's say I need buddies, Let's
(38:14):
meet once a month or once everytwo weeks, yeah, and check in.
Yeah, And um it sounds like, um, you have understood and
built for yourself and been able torely on these what they call informal supports
right for yourself. Um it's I'msitting here actually having a much better feeling
(38:39):
about that whole term than I haveit sometimes in the past, because,
um, you it's it's such abeautiful example of like, yeah, you
have a wide circle coming around you, and you're finding these things and people
that you connect with. And inmy case, like people would talk about
(39:02):
natural supports being me for my daughterand basically that how much I'm supposed to
continue giving, right. So Ireally came to kind of just developed this
perspective that no, no, no, we need universal access to like collective
(39:27):
public services, which we do.And at the same time, you're bringing
me back to how important the informalfriends and family and making these connections one
to one really are. And Ihave had that in my life as well,
and I think it's time to recognizethat more as well. You know,
thank you. I'm pretty blunt,or at least I am an external
processor. So at one point Iwas really falling apart and somebody had kind
(39:50):
of blown off a meeting where Ijust needed some help, and I was
I've had it, and a lotof people would go back and forth texting,
oh, well, what if Icome this day or what if I
bring this this? And I waslike, I can't. I just can't.
I'm over the I've broken everything.And I put on Facebook. I
was like, this is what Ineed. I need this, I need
this, I need this. Ineed people to show up when they say
I do not need to make fortext messages about this and I can't do
(40:15):
this anymore. And I probably lookedlike I was having a nervous breakdown because
I was, well. People steppedup so powerfully and they said, we
just didn't know. And so fourgirlfriends came over and made like a house
what they call it a like barnraising, took care of my dad's house
because nobody had for a while,even with a cleaner. It was like
(40:36):
things were broken. I didn't knowhow to fix them. I didn't know
what was wrong with them. Theybasically I bought a bunch of like you
know, rubber gloves you wear aclean with and we all took turns and
it was like a day of standingup the house, just the house alone.
Other people just dropped off meals andthey didn't ask me to return the
tupperware, like yeah, you know, I don't. I'm sorry, I'm
(40:59):
nice glass dishes, but no,don't. Don't give me something you need
back because I'm not going to keeptrack of it. But people really did
step up, and it was alsothe way for anybody doing this who wants
to be of help make it easyand don't you know, just say I'm
dropping off a cast role, I'mdropping off bread, eyebaked, dropping off
a bunch of soup. It'll beat your front door. They don't need
(41:22):
a lot of praise and time withyou. And I've now seen this with
friends whose spouses fed cancer. It'slike, you know, there's a sign
up sheet for meal drops and youknow whether or not somebody's in the mood
to have people sit and chat orjust drop it off and let it go.
And I feel like there's we cando. We can do more of
this, and I want to holdmyself to that too, because it did
(41:45):
help me quite a bit. It'stime for a break. Please stay right
here and we will be right back. Thank you for sticking around, we
continue our conversation. I've both receivedand given UM certainly to that kind of
meal exchange. UM. Interesting,interestingly enough, that was something that was
(42:05):
really helpful after our family experienced ourour house burning down. Was you know,
but yeah, it was just intense. But UM. One of the
things that that was pretty awesome isthere were groups of people around here that
UM were preparing and delivering meals andI was UM at first reluctant to take
(42:30):
them because I was going, youknow, we can buy our own and
and and go to the restaurant orwhatever. Like we're we're getting reimbursed from
insurance. We're actually pretty good,We're fine. And they were UM for
the rebuild anyway, and most ofwhat we lost, and and there were
so many other people like that Isaw. It was just like so much
(42:51):
harder hit. And they were like, no, no, no, it's
it's it's gonna you know, it'sif it helps you be able to take
the time that you need to addresssee issues you're going through, if it
helps you emotionally anything, you aremore than welcome to it. And it
was really was a big help becauseit was just one last thing to stop
and think about it all. Youknow, this food just showing up.
(43:15):
Yeah exactly, Yeah, you know, just because we're on and I have
a podcast. I also want toplug because my coming at this caregiving is
because it's for an elder and itmay not relate to your daughter's intellectual disability.
But I have to say, dementiawas a brand new world and I
never actually asked what it meant.And I didn't realize that until I interviewed
(43:36):
somebody who is an occupational therapist fora lot of people with dementia, and
it didn't I didn't even know howdementia can impact you physically, can change
balance, it can change motor skills. So in terms of like, I
have to plug the podcast because I'vebeen so supported by Texas Public Radio and
NPR one, which is where youcan find it. NPR one app you
(43:57):
can look for twenty four seven,a podcast about caregiving. I've had some
Really you got there before I did. I wanted that plug in there,
Yes, right to tell me becausethe first season we did was really just
my diaries and conversations with my dador other people to tell me how to
do stuff. One was we hadto give my dad a shave once when
he was in the hospital and noone could do that, and it was
(44:19):
so complicated, it was really hard. And I never thought about doing something
like that. And then I foundthis razor that Gillette had made for exactly
that purpose, and I called theengineer and said, like, what made
you think of doing this? Andwhy is that different? Why is it
different given someone else a shave?How does that work? I never thought
about that. So those are thekind of conversations I had. How do
(44:42):
you talk about dying? That wasa hard one. How do you talk
about the fact that your friends oftenkind of I wouldn't say they abandoned you,
but certainly get a lot thinner onthe ground when you can't go meet
them downtown for dinner, or youcan't play scrabble as well as you used
to. All right, dementia.You know some of the people I heard
from millennials Ronald Reagan's daughter about caringfor her dad and caring for family caregivers
(45:07):
like yourself. She ran caregiving supportgroups for many years after her dad died
of Alzheimer's. And so if it'snot so much to go rab ra my
podcast, but I hope that someof those episodes are useful to people if
they are in the same situation,just to see how other people are dealing
with it, and they absolutely willbe I was so delighted to find your
(45:29):
podcast and it is so well done, and it's with the same directness and
honesty that you're expressing here, andI really appreciate that well thanks to great
producers and really terrific people that supportedit. The final season, I was
trying to figure out, like,why don't I know about this in literature?
(45:52):
Is there like a famous literary characterwho's a caregiver? No, famous
famous literary characters are the heroes,They're not the people taking care of And
I thought, where can I findmodels that do this so I know how
to do this? Like where doI see this in public culture? I
don't, So I kind of wentaround looking for movies and TV shows of
books and I found a few ofthem, and one was Walter Mosley,
(46:16):
who was a very well known andextremely accomplished novelist, and he'd done a
book about a character who had wasalmost a detective who at Alzheimer's. I
actually had a fantastic conversation with theson of writer Gabriel Garcia Marquez about caring
for his parents at the final chaptersof their lives, and his dad's knowledge
(46:38):
was about memory. I mean that'swhat his father wrote about. Yeah,
that was that was fascinating, andand again like it's so honest and we
could feel like as a listener,I felt like, I'm really getting to
know each of you there. Yeah, so whatever is useful somebody. I'm
(47:04):
not saying anybody needs to listen toall of it, but I there were
things I never thought to ask about. Um, even a minister who has
Alzheimer's herself, who's now talking tome about how to be treated as a
person with Alzheimers, how does shewant people to respond to her? What
is she hoping for? Look atit from the point of view of the
elder person or the person with thedisability being cared for. And I didn't
(47:27):
even respond to the word caregiver.It felt like a very foreign I didn't
want to call myself that Because Idid, I thought it sounded kind of
sterile and like I was also praisingmyself too much, like oh, I'm
gonna caregiver. But essentially that's whathappened, and it's you know, It's
just something you don't really think ofyourself as, but when it takes up
that much of your life, itbecomes the centerpiece. The whole question of
(47:52):
who is a caregiver is actually reallyhuge for me as a mother, right,
I've had so many conversations. Evenas my daughter gets to be a
teenager and a young adult who's stillrequiring full on care. She cannot safely
be left alone at any time.And people will look at me when I
(48:13):
start to describe what I do withmy time, because it's, you know,
the first thing when you meet anew person, what do you do?
Right? What's your job? Andpeople if I say I am a
caregiver for my daughter, they willcome back with a lot of really kind
(48:34):
of bizarre comments actually about really,well, this is just what mothers do.
No, you're not a caregiver,you're a mother, or they'll just
look really uncomfortable and kind of likereally really and you get paid for that,
you know, right? And youcan be paid. I mean in
some cases it is possible to getsome government support as a family caregiver.
(48:57):
Yeah, but it takes a lotof work to get that set up and
it doesn't always it certainly doesn't coverall the bills. It's not available,
right, it's low pay, it'snot available everywhere across the United States,
and it really depends a lot onthe specifics of the needs of the person
that's receiving care. There's all theselittle boxes that social services divide people up
(49:19):
into, and you have to qualifyfor one or the other. And you
know, I just wanted to makea comment or observation you and I'm so
sorry you've lost your house in wildfires. Yeah, yeah, And I thought
about this as a framework for thinkingabout care. If your house was on
fire, what would you grab?You grab the people you loved, Right,
Well, why do we treat andpay people who deal only with you
(49:42):
know, intellectual property law or Idon't know, cyber security or cyber money
whatever that's called cyber currency. Wereward them so magnificently, and yet the
things we care about most are thepeople we love. So why isn't that
rewarded better? Why aren't we justtaking care of the people who do the
care. That seems to me likea really weird paradox that you would not
(50:08):
go save your job if your housewere burning, Yeah, you save your
family it's so true, and itwas such it was so interesting to have
that experience after all of the yearsof things that we had already been through
with my daughter, because people cameout of the woodwork really really sweet and
kind and generous with us after thefire, like lots of people, just
(50:34):
so many offers of help and whatcan we do? And everyone was there,
it seemed like. And yet myloss of income over all those years,
which created a situation at a certainpoint where I was really distressed and
I, you know, you wereyour mention of the term demented, like
I felt that way at a certainpoint similarly, and I it was just
(51:00):
so very frustrating, and I wouldkind of have breakdowns sometimes in front of
people, and their responses would betumbleweeds or would be, oh, you
just you need to go, youknow, do some therapy, You need
to go take a break, andit's like, you know, who is
(51:22):
going to watch? Are you volunteeringto care for my daughter while I do
that? And it just it wassuch a different response. And yet the
magnitude of what what we lost orgave up in either case is similar or
(51:45):
it's more because of the caregiving really, you know, even for elder caregivers,
for families members to take caremeilders.I think it's women and they lose.
I think the number I saw wasa round three hundred and fifty thousand
dollars in a lifetime of earning becauseyou're losing contributions to retire, you're losing
income that would go into your SocialSecurity formulation, you're losing the basic income,
(52:06):
you're losing off in health insurance.There's so many ways this becomes almost
always a compounded problem for women.And again that's you know, I swear
if men had this and they werethe full time person in charge, we
would solve it a lot faster.Yeah. I also want to make a
shout out to people who are notwhite women, middle aged, like I
(52:27):
suspect you and I are, becausethat's who was writing memoirs about this,
that's who was getting publishing contracts whenI was starting to look at this,
and it's dementia elder. You know, being an aging person who's trail doesn't
It doesn't choose anybody. It happensin every family. So I was really
trying to bring in Latina voices andblack voices and Asian voices because cultural expectations
(52:52):
also play a large role. AndI don't know what some other cultural expectations
are, but I had to ask, like, did your parents at you?
And you know, in two casespeople said, yeah, I'm the
youngest daughter in a Latina family,and my dad's very has great expectations that
I stay home and care for himand care for my mother. Yeah.
And I don't have statistically like numbersat my fingertips, but I know that
(53:15):
loss of income from caregiving more stronglyimpacts women who are Latina or black or
other kinds of identities. And Irecognize that I'm relatively privileged in actuality compared
(53:36):
to a lot of people. Isthere anything else you think listeners can use
besides a at a boy like wayto go what you're doing? It helped
me for somebody to say, youknow what your job is to rest?
That's awesome. Your job is torest, You're doing awesome. Your job
is to ressed, like you don'tknow how hard what you're doing is.
And I was like I needed otherpeople to see it invalidated. And I
(54:00):
knew it was a big deal,but I felt like, why isn't I
don't know that I knew how deepa complex issue. It was, and
and I don't want I don't evenwant to talk about my parents that way
because I don't want to sound likethey were causing distress. That was the
last thing they want. It's justhow it rolled out. And it's not
the parents that are causing distress.It's the it's the care needs exists in
(54:24):
a system that doesn't provide for them. It's it's like we're one of the
few countries that don't. Yeah,if you needed to get thirty miles to
a job, you wouldn't say,oh, you know, um, the
car has a problem. You wouldsay, like there's no road right right,
right, right, and that's aproblem. Yeah, thank you so
(54:46):
much. It's been really lovely talkingto you. And I hope this is
helpful to people. And congrats toyou for like putting this out and to
get through losing a house in awildfire and still doing this and being a
full time a caregiver your daughter.And that's not just a mom's job.
It's a family and it's a socialthing and we can do better. That's
my hope is that we all askwhen we vote, look at your legislator,
(55:10):
ask what they've done on behalf offamily caregivers and just checked that record
and hold them to it. Wehave power, we just don't know how
to organize it. And that's whereI'm really want to make that my next
goal. Love it, love it, love it, love it. I'm
with you, Okay, thank you. Hope you have a great afternoon.
Thank you.
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