May 23, 2025 • 27 mins
Every healthcare professional has likely encountered the silent struggle of caregivers—those dedicated individuals who sacrifice their time, energy, and often their own wellbeing to support loved ones with chronic conditions or disabilities. In this deeply personal conversation, Dr. Sheelagh Schlegel draws from her 33 years as an occupational therapist and her extensive work in global health to shed light on the hidden crisis of caregiver burnout.
Dr. Schlegel shares compelling stories from her practice that illustrate the multifaceted challenges caregivers face. From the spouse who missed an entire year of medical appointments while caring for a partner with dementia, to the financially-strapped daughter forced to leave her mother alone during work hours, these accounts reveal the impossible choices many caregivers confront daily. Perhaps most eye-opening is her discussion of children thrust into caregiving roles—a particularly vulnerable situation that demands our attention and intervention.
What makes this conversation particularly valuable is Dr. Schlegel's balanced approach. While acknowledging the serious risks of caregiver burnout, she also emphasizes the deeply fulfilling aspects of caregiving when properly supported. She offers practical guidance for healthcare professionals on building trust with caregivers, identifying early warning signs of stress, and connecting families with appropriate resources. Her profound insight that "if the caregiver goes down, the whole care situation may collapse" underscores why supporting caregivers isn't just compassionate—it's essential for sustainable patient care.
Whether you're a healthcare professional looking to better support your patients' caregivers, someone currently in a caregiving role, or simply preparing for future caregiving responsibilities, this discussion provides valuable perspective and actionable strategies. Listen now to understand why the wellbeing of caregivers must be central to any comprehensive care plan.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hello everyone, I'm Dr Beatrice Ippolit and this is
your World.
Hello everyone, today we aremore than privileged to have a
(00:20):
special guest with us.
You know, sheila, I don't liketo say your name because I don't
want to make any mistakes.
So will you tell the?
Speaker 2 (00:30):
viewers what your name is.
It's very difficult to say mytwo names together.
So I am Sheila Schlegel,formerly Murphy, which would
have been a lot easier.
I did marry Mr Schlegel, nowSchlegel, so yes, it's a little
difficult to say.
Oh, you can call me Sheila youknow, that's how it's gonna be.
(00:52):
That's what I always say.
To say it three times fast, or?
Speaker 1 (00:57):
just call you Dr Sheila.
You know so, sheila and I, soit's like you know, we have some
history, right.
Speaker 2 (01:04):
We do Started online in our online program.
I reached out because I saidwait this lady's from.
Speaker 1 (01:16):
Haiti, we've got to be friends and you know what's
funny?
You know, so it's like you know, when I started talking to
Sheila, I found out that sheilawas more asian than I am.
Yes, I did travel to haiti alot for about 10 years, and her
husband traveled to my country alot, so they they used to teach
(01:38):
in a school back there too.
You're still teaching there,right?
Speaker 2 (01:42):
yes, we're teaching an occupational physical therapy
program oh started off inperson, but now it's virtually,
unfortunately, because we cannottravel to haiti.
Speaker 1 (01:53):
But yeah, we're teaching different courses as
volunteers okay, so while we'retalking about Haiti, can you
please tell us a little bitabout yourself?
In Haiti or just in general.
Speaker 2 (02:09):
In general, I'm an occupational therapist.
That's my trade 33 years as atherapist and, along the way,
just like yourself, I wanted to.
I actually graduated in Irelandand I came here very quickly
afterwards.
But, as yourself, I wanted toenhance my education.
(02:33):
I wanted to continue myeducation and I decided because
of my work in Haiti and my lovefor working with marginalized
communities and globalcommunities I decided to do a
Master of Public Health and thena Doctorate in Health Science
with a specialization in globalhealth.
(02:54):
So it was mostly because ofHaiti that I went into this
direction of public health andglobal health to work, be able
to enhance my work there.
And so, even though I go toHaiti and I go to other
countries as an occupationaltherapist, I also have some
(03:15):
background in public health andglobal health to help plan
programs better, do a better job, so that we try to work with
sustainability and, you know,with different communities.
Speaker 1 (03:28):
Okay, I know today you're not here to talk about
Haiti, but before I even startwith the subject that you really
want to talk about.
So what really was the triggerthat pushed you to start working
?
Speaker 2 (03:45):
in Haiti.
Well, I always wanted to workin a global setting.
From when I was younger, youknow, I came and started working
in the United States, I startedhaving children and I got
married and married again.
So I wanted to always go andwork in another country.
(04:07):
So, as it happened, or thechurch that we belong to had a
Haitian priest working there sowhen he said hey, who wants to
go to Haiti?
I was the first person.
I think the only person to raisemy hand at that time, so that
started a tremendous experienceof going to Haiti.
Speaker 1 (04:31):
And eventually you got your husband involved.
Speaker 2 (04:34):
No, the very first trip we weren't married at that
time, we were both divorced, wewere friends, we were colleagues
and I said hey, you want to goto Haiti.
So actually our first triptogether, which became a love
story and then we got married afew months later, is because of
Haiti.
Speaker 1 (04:55):
Oh, okay.
Speaker 2 (04:56):
So it was a journey of a lifetime for both our
relationship and for ourbeginning to love Haiti.
Okay, that's wonderful.
So in many ways, you know, Godpointed us in that direction for
a reason.
I think, six months later, wewere married.
Speaker 1 (05:13):
Okay, okay, and on behalf of all the Asian people,
I want to thank you, both youand your husband, for all you
have done for the country.
I know that, you know you gaveyour sweat, you know it's a love
for the country.
Speaker 2 (05:30):
So I thank you for saying that, but I also thank
Haiti for giving me a start inglobal health and for giving me
my doctoral project, my romanceand marriage with my husband and
all of the beautiful food andexperiences and friends that
I've made.
So I think it was a mutual it'sa mutual thing.
(05:54):
I know that I've helped Haiti,but Haiti has also been a huge
gift for me, and now workingwith the students there you know
it's I feel like I'm helpingthe next generation of health
providers, health care providers, so I'm hoping that that in
some way helps the country and Istill owe you some black
horizon I think my whole familywants to come for the food you
(06:16):
know definitely.
Speaker 1 (06:17):
I'm gonna make it happen now.
So what you have for?
Speaker 2 (06:21):
us today.
So one of the things that I'mpassionate about and actually
right now I'm working on a on astudy of of parents in Guatemala
, because I haven't been able totravel to Haiti, so I have been
going to Guatemala is thiswhole idea of caregiving.
So right now I'm working, as Istill work with children as well
, but my my main focus is home,health and working with adults,
(06:46):
older adults.
But working with parents hasbeen a project that I've been
working on, and it just bringsto me both the importance of
caring for the caregiver and howmuch stress caregivers whether
it be the parent of a child withmultiple disabilities or a
(07:07):
disability, or whether it's anadult or young adult or older
adult caring for somebody elsethat I feel passionate about
making sure we're always lookingafter the caregiver.
As I like to say, you know, thecaregivers are our clients too.
Yes, we cannot enter into arelationship with a client
(07:30):
without, at some point, engagingwith a caregiver, whether it be
a paid caregiver, an unpaidcaregiver, a family member,
spouse, neighbor, whatever it is.
We're going to somehow engagewith that person.
For the most part, and we mustconsider them as part of our
therapeutic relationship andeven ourselves.
Speaker 1 (07:49):
So you know, you know , at some point in our lives
absolutely we're gonna fall intothat category too, absolutely
and you could be, you know,squeezed from both sides.
Speaker 2 (07:58):
You may be a parent, but you're also caring for your
own parent so there's manypeople that are under this type
of stress.
It can be a positive experiencetoo, caring for somebody.
Let's not make it negative.
You know always negative but itcan be a very positive
experience.
But it's also a point ofconcern for us as health care
(08:20):
professionals, especially forcaregivers mental health.
Speaker 1 (08:23):
Mm-hmm.
Speaker 2 (08:24):
Because it's incredibly stressful.
Speaker 1 (08:26):
It is.
It is, and sometimes you knowyou find people who will be
taking care of their parents,you know, or sick child, or whom
have you and don't have thesupport you know to kind of like
help them with their mentalhealth Right.
So now everything falls on yourshoulder.
(08:48):
You have to take care for yoursick parents.
Now you have your family onyour own, so you have your job
that to go to.
Speaker 2 (08:55):
You have this and that, in fact, 60% of caregivers
are working full time, soimagine the stress of having to
try to and a lot of them don'teven tell their employers, so
they have the stress of takingcare of the client or their
family member, and then they'realso trying to work.
Speaker 1 (09:13):
Yeah, and so I feel that sometimes they should be
able to find people that theycan rely on, people, that if
they got to a point where theyneed some assistance, where they
can easily call to say you knowwhat, can I have two hours or
three hours?
(09:34):
So while I'm taking care for mysick mother, my sick father,
that would be a good thing tofind somebody to give me like a
two or three hours with speechyou know, with my child.
Speaker 2 (09:45):
You know, I think that's the point of of
contention with a lot of peoplewho are caregiving is they feel
guilty if they have somebodyelse care for their child or for
their parent or whatever they.
It makes them feel inadequateor they're stressed about it.
They're worried.
Will that person take care ofmom or dad, like I do?
(10:07):
but it's it so they often resistyou know, having you know
outside help because they feelguilty or they feel like I'm.
I'm not a you know, I'm alesser person if I let somebody,
a stranger, come in and takecare of my parents or my my
sister my brother.
But it's something we need towork.
(10:28):
We need to work with them onnow.
The first thing is develop thetrust right.
So we want to obviously get theclient to trust us right away.
You want to.
First thing is to make therelationship with the client.
Second thing is you've got toform the relationship with the
caregiver and there can bechallenges with that.
(10:48):
I'm sure you've hadconversations, as I had, where
the caregivers or the parent orwhatever is stressed and maybe a
little angry or frustrated.
So sometimes it can bedifficult to make that
relationship but, it isimportant to try to make it, but
it's doable.
It may be difficult but it'sdoable.
Patience and empathy and timeand giving them a chance to talk
(11:15):
maybe giving them time, a phonecall or just time for them is
really important to build thatrelationship.
Speaker 1 (11:24):
And sometimes you may be taking care of a person
where you have to give up onyour own life, literally.
Speaker 2 (11:31):
You know like.
Speaker 1 (11:32):
I've seen people who had to quit their job.
Speaker 2 (11:34):
Especially if you're taking care of somebody with,
say, dementia, where they haveto be supervised 100% of the
time.
They may be having problems withsleep, they may be getting up
at night, they're not safe to bealone.
It can be incredibly stressfulfor a caregiver in that
situation because they're notable to trust that their family
(11:57):
member is going to be safe,listen or remember instructions.
So it's incredibly, incrediblystressful.
So what I try to practice is,when I go into, especially when
I do home health, is, if there'sa caregiver there whether it be
the son or daughter or spouseor, you know, could be anyone
(12:17):
really could be a partner orfriend is I'm going to ask them
how are you doing?
I'll do my assessment of myclient, but I'm also going to
say how are you doing and justlet them know that I have
empathy for them and I'm goingto encourage them maybe not day
one, but over time start lookingfor options, like you just said
, for a couple of hours, two orthree hours, to give them a
(12:42):
break and, as I feel ashealthcare professionals, it's
part of our job to, to you know,make referrals and try to help
them get the services that theyneed yes, yes indeed.
Speaker 1 (12:53):
And when you say, when you go to the home, you,
you actually know not.
You know that you deal for thepatient, but you also want to
make sure that you check on thatcaregiver, and sometimes even
if it is a paid one.
Speaker 2 (13:06):
I remember yes, when I used to come.
That's a really good point.
Speaker 1 (13:09):
Yes, I remember when I used to come back home visit
as a social worker.
So it's like when I go to theirhome and I see their home
attendant, bear in mind for youand I or other people
professional in the field.
They may have the skill, theknowledge to deal with a
difficult patient, butoftentimes those home attendants
(13:31):
, they don't have the knowledgeand the skills that many of us
have.
And here you are.
They have to deal with apatient who suffers with
dementia.
Speaker 2 (13:40):
And they may not be getting enough sleep, exactly.
So, they may be up a lot or theperson may be getting up at
night, or they have to go to thebathroom, or they just need to
be with them.
So you have to watch out forthe signs of burnout in paid
caregivers.
Speaker 1 (13:55):
Yeah, it's a job, but at the same time talking, so it
can be stressful.
Speaker 2 (14:00):
Yeah, and I mean sometimes people employ you know
, people and they're not beingfair, they're not making sure
that they're getting enough timeoff or sleep or things like
that.
So you want to be on alert forcaregivers.
Um, I don't want to make it toodramatic, but a caregiver who's
very, very stressed and notgetting enough sleep and not
taking care of themselves aremore at risk for getting for
(14:22):
losing their patients, gettingfrustrated or more at least
getting you know to getting intodealing with a mental problem
yes, like stress, depression,anxiety and that can lead to a
mental health issue for sure fora caregiver, where they're
going to actually go down theroad of getting a diagnosed
condition.
(14:43):
However, being observant and Ithink you spoke about doing your
visits too like just openingyour eyes to not just zeroing in
on your client but just kind ofwatching how things are going
in the, in the environment andthat doesn't necessarily mean
just the home it could be you'rein the hospital with visiting a
(15:06):
client, or you're in anassisted living facility
visiting a client, or you knowanother type of residence,
residential facility.
Just watching and seeing what'sgoing on.
You might pick up somethingfrom Dynamics.
There might be some tensiongoing on or you're going to pick
up that caregiver who's just soburned out, they're exhausted,
they're not taking care of theirhealth.
(15:27):
I've been in a situation notthat long ago actually in the
past few months where acaregiver told me she didn't
have insurance, she had a highblood pressure, she couldn't go
to the doctor and she wasactually asking me to take her
blood pressure during the visitand I was at home to find out
that her you know she had quitesevere hypertension and she
(15:48):
wasn't taking care of it.
But she's just working andworking and working, support her
family and neglecting and thiswas a paid caregiver Also
families as well.
There's been other situationswhere I've noticed another
client, a gentleman withAlzheimer's.
They just moved into anapartment.
So they just gave up their home, moved into an apartment.
(16:10):
So the spouse was alreadyfeeling sad and, you know,
depressed about leaving hertheir home, living in now a one
bedroom apartment, which was agood thing in a way because it
was, you know, more accessible.
But I turned to her and I saidhow are you doing?
And she said terrible, and I'mnot.
I haven't been to any of mydoctor's appointments in the
(16:32):
past year, not one.
So she missed all of herappointments.
Primary care cardiologist.
Speaker 1 (16:41):
Which is not good, yeah, endocrinologist.
Speaker 2 (16:43):
You know all of those .
She just kept canceling herappointments and it was only
that I looked at her and askedthat question that she opened up
and said right away yeah, I'mnot taking care of myself at all
.
Speaker 1 (16:58):
I haven't done to any of my doctors.
Speaker 2 (16:59):
That's not good, because you have to be healthy
in order to invest in you knowin others, right, and what I
always say is if the caregivergoes down, the whole care of
that patient may collapse.
The whole situation might justimplode, because now if the
caregiver ends up in thehospital, this client is going
to end up having to go intoresidential care or some type of
(17:21):
24-hour care, so it can reallypull the whole situation down if
we don't pay attention to thecaregiver.
Speaker 1 (17:29):
I know a girl who's taking care of her father, and
the mother lives in the housetoo.
But there was a sick brotherwho got into the picture and
unfortunately the sick brotherlives in a different state, so
where she had to travel to be ofassistance to that brother
(17:51):
while she's taking care of bothof her parents, of assistance to
that brother while she's takingcare of both of her parents.
So one day the girl called meand said beatrice, I don't know
what to do, it's so stressful.
And I know what she was dealingwith because the tension, the
stress you know.
So you get two differentdirections, like you know, and
she started crying over thephone because she didn't know
(18:13):
what to do.
It was way too much.
She had too much in her plate,absolutely you know to deal with
.
So you live in New York, so nowyou have another sick person
living in another state whereyou have to travel close to
three hours to be of assistance,and you have your own parents
and you have a small child.
Speaker 2 (18:33):
You bring up a really good point Like caregiving at a
distance is very difficult.
You know, some of us have beenthere when we're caregiving for
somebody far away very difficult, but then also caregiving close
you know where you're livingwith the person.
I mean, in every situationthere's risks and we have to be
attentive.
Speaker 1 (18:52):
And sometimes it depends on the condition of the
person.
I know people who are takingcare of their sick parents so
they cannot even go out for asocial event, right?
Because if they go out, so thatsick person cannot be left
alone and oftentimes they maynot have the money to pay for a
sitter to stay with that personyeah, I've seen situations where
(19:15):
people are going out andleaving the person in bed with
you know the rails up becausethey can't afford a caregiver.
Speaker 2 (19:22):
I was one situation where the the client's- daughter
was going to work that iswhiskey too.
Going to work for six, seven,eight hours and leaving mom in
bed.
Work for six, seven, eighthours and leaving mom in bed and
using absorbent diapers orwhatever to try to prevent any
accidents.
But it was because of herfinancial situation.
(19:44):
She was supporting the two ofthem and I believe there was a
child as well and she had towork.
So we are not doing our jobs ifwe're not trying to help people
find resources in thatsituation.
Speaker 1 (19:55):
Because everyone's at risk, because you know, if
anything were to happen to thatsick person, she would have been
in trouble.
Speaker 2 (20:04):
Absolutely.
If there was a fire or anythinglike that and I did have to
have that conversation with herI actually brought in a social
worker to help her get resourcesbecause I didn't want to come
down hard on her, because I knewwhy.
She was doing it, very caringto her mom, but that was too
risky.
Speaker 1 (20:21):
That was very risky.
Yeah, you know, because youknow when you get into trouble.
Unfortunately, the law will nottake time to understand that
you didn't have the moneyExactly.
Speaker 2 (20:32):
The law is sort of black and white on that issue.
You left somebody in bed.
Yeah, and that will beconsidered, I think, as elder
abuse or neglect, so it is up tous to sort of be observant,
watch out for things and try toreally educate and speak to
those caregivers.
I want to also bring up thesubject of you know your typical
(20:55):
caregiver is, you know, aroundabout 50s, looking after an
older parent, or it could be thespouse, obviously, of any age.
I also want to bring upchildren being caregivers or
young adults.
You know adolescents sometimesbecause I have been in that
situation where children arehelping either their parents or
(21:16):
their grandparents and are beingput in a position of
responsibility.
Also may not be safe, butthey're really caring and
they're doing it for all theright reasons and they might
actually be really good at it.
But also you want to watch outfor those children that the
stress and the strain and therisk for mental illness, also
(21:37):
the risk for trauma.
If they are exposed to maybesomebody with dementia, with
behavior issues, or maybe theperson they're caregiving falls,
it gets hurt.
You know that there could be arisk for trauma for those
children or young people.
Speaker 1 (21:54):
You know that there could be a risk for trauma for
those children or young people.
Yeah, I'm glad that youmentioned that, because way too
often I've seen it like where,again and again, people have
financial issues and financialissues can be a serious issue
for many people, absolutely.
Because, when you don't have it,you don't have it.
I got it but in the meanwhile.
(22:14):
So if you are, you know, soit's like you don't have the
financial means to pay a sitterto come and stay with those kids
.
I've seen kids you know like 12years old, though I don't think
there is a specific age toreally leave a child you know
alone right however, if anythingwere to happen, then that's
(22:36):
where you know everything gonnabe in black and white.
So if I have a 12 years old andI have a six years old or a
seven years old, I cannot leavethem alone, right?
Speaker 2 (22:48):
or I should not be leaving them alone or people may
be leaving them with an oldergrandparent who's not capable,
and both are trying to take careof each other, but neither are
doing a very good job, so I'veseen a case like that.
Speaker 1 (23:01):
You know where the grandmother was legally blind.
On paper she was legally blind.
They claimed that she could see.
But I'm like, what you thinkand what is actually on paper
are two different things.
Speaker 2 (23:17):
And I think that, sadly, we have to do a good job
at educating them about what ifsomething were to happen.
You know, okay, things aregoing well now, but what if
there's a fire?
What if there's a fire?
What if there's a weather event?
I mean, we've seen severeweather, things right, where
tornadoes drop down sometimes iteven happened to us, you know
or there's all of a sudden, youknow, a hail storm.
(23:39):
You have to think about thosesituations.
Speaker 1 (23:41):
Especially with kids.
You know fire, it's easy, youknow, for them to set, you know
the place into fire.
You know it's like you knowthey go and warm up something in
the microwave.
Yes, don't know.
You know exactly that traycannot be placed in the
(24:03):
microwave before even know it.
So it's an issue.
So now?
So that's when you're gonnahave to answer to all of the
questions and, uh, it's hard I'mnot trying to be hard or not to
understand people's situations.
Speaker 2 (24:14):
Most of the time it's financial.
As you said, people have towork, they can't get time off,
they can't get family medicalleave unless it's unpaid.
So they're trying to make itall.
They're trying to keep all theballs in the air at the same
time, juggling, and something'sgoing to drop, either their
health or the person they'retaking care of, or their kids or
(24:35):
whatever.
So, yeah, it's really importantto be observant, to look out
for those risks and to bring inother professionals or resources
or try to help them connectwith other institutions that can
help them.
Speaker 1 (24:48):
You know that could be a serious burden, While
financially you didn't have thecapability to spend or have the
money to to spend or afford todo this or that.
Now here you are dealing with alegal situation where you're
gonna have to find money to payfor a lawyer exactly, exactly
now.
Speaker 2 (25:07):
There are um, right now I'm not sure what will
happen with changing governmentsand things, but right now there
are resources in New York andthe state that I live in,
connecticut, where you canbecome a paid caregiver for your
family member.
It's not always perfect andit's not always available to
everyone, but it's certainlysomething that people should
(25:30):
consider, that they they canbecome.
You know, get some paid, orsomebody in the family can be
paid to be a caregiver.
Speaker 1 (25:39):
Yeah, I think it's the same for New York.
Speaker 2 (25:41):
Yeah, I did look it up, and you do have it in New
York too.
Speaker 1 (25:43):
Yeah, except you know , like for the wife, you know if
it is your husband.
Speaker 2 (25:46):
Right, it can't be a spouse.
We just got to take care ofthose husbands, no matter what.
Speaker 1 (25:51):
So you know that was part of the deal, the contract,
yes, that was part of thecontract, so it's like you know.
So that's your burden, that'syour responsibility.
Speaker 2 (26:03):
The government is not going to pay for you to take
care of your husband or yourwife.
Speaker 1 (26:09):
But even you know, I've seen, you know like family
members who took on that job totake care of their sick parents
but still have to do theirregular job.
Speaker 2 (26:21):
Yeah.
Speaker 1 (26:24):
So it's constantly a burden.
So, and I feel that if you haveyour regular job and sometimes
people, some of them, may havemore than one job, absolutely
regular job, and sometimespeople, some of them, may have
more than one job, absolutely soit's like you know that it's
not easy for you to do.
You know, just leave the dooropen for somebody to get the
help from somebody else becausethe government is paying for it.
(26:47):
so, again and again, I'm nottrying to get into people
business or dictate people onright, you know what to do but
uh, if I'm already walking, youknow like full time and I know
that you know so it's gonna be aburden because you don't want
to burn out right.
Speaker 2 (27:07):
Sooner or later you're gonna feel it either
mentally or physically, yes, orspiritually or emotionally it's
going to take an effect,especially when it goes long
term.
You know years, one year turnsto two, turns to five.
You know it can be very, veryhard on the, on the caregiver.
Hello everyone, I'm Dr Beatrice Ippolit and this is
your World.
Hello everyone, today we aremore than privileged to have a
(00:20):
special guest with us.
You know, sheila, I don't liketo say your name because I don't
want to make any mistakes.
So will you tell the?
Speaker 2 (00:30):
viewers what your name is.
It's very difficult to say mytwo names together.
So I am Sheila Schlegel,formerly Murphy, which would
have been a lot easier.
I did marry Mr Schlegel, nowSchlegel, so yes, it's a little
difficult to say.
Oh, you can call me Sheila youknow, that's how it's gonna be.
(00:52):
That's what I always say.
To say it three times fast, or?
Speaker 1 (00:57):
just call you Dr Sheila.
You know so, sheila and I, soit's like you know, we have some
history, right.
Speaker 2 (01:04):
We do Started online in our online program.
I reached out because I saidwait this lady's from.
Speaker 1 (01:16):
Haiti, we've got to be friends and you know what's
funny?
You know, so it's like you know, when I started talking to
Sheila, I found out that sheilawas more asian than I am.
Yes, I did travel to haiti alot for about 10 years, and her
husband traveled to my country alot, so they they used to teach
(01:38):
in a school back there too.
You're still teaching there,right?
Speaker 2 (01:42):
yes, we're teaching an occupational physical therapy
program oh started off inperson, but now it's virtually,
unfortunately, because we cannottravel to haiti.
Speaker 1 (01:53):
But yeah, we're teaching different courses as
volunteers okay, so while we'retalking about Haiti, can you
please tell us a little bitabout yourself?
In Haiti or just in general.
Speaker 2 (02:09):
In general, I'm an occupational therapist.
That's my trade 33 years as atherapist and, along the way,
just like yourself, I wanted to.
I actually graduated in Irelandand I came here very quickly
afterwards.
But, as yourself, I wanted toenhance my education.
(02:33):
I wanted to continue myeducation and I decided because
of my work in Haiti and my lovefor working with marginalized
communities and globalcommunities I decided to do a
Master of Public Health and thena Doctorate in Health Science
with a specialization in globalhealth.
(02:54):
So it was mostly because ofHaiti that I went into this
direction of public health andglobal health to work, be able
to enhance my work there.
And so, even though I go toHaiti and I go to other
countries as an occupationaltherapist, I also have some
(03:15):
background in public health andglobal health to help plan
programs better, do a better job, so that we try to work with
sustainability and, you know,with different communities.
Speaker 1 (03:28):
Okay, I know today you're not here to talk about
Haiti, but before I even startwith the subject that you really
want to talk about.
So what really was the triggerthat pushed you to start working
?
Speaker 2 (03:45):
in Haiti.
Well, I always wanted to workin a global setting.
From when I was younger, youknow, I came and started working
in the United States, I startedhaving children and I got
married and married again.
So I wanted to always go andwork in another country.
(04:07):
So, as it happened, or thechurch that we belong to had a
Haitian priest working there sowhen he said hey, who wants to
go to Haiti?
I was the first person.
I think the only person to raisemy hand at that time, so that
started a tremendous experienceof going to Haiti.
Speaker 1 (04:31):
And eventually you got your husband involved.
Speaker 2 (04:34):
No, the very first trip we weren't married at that
time, we were both divorced, wewere friends, we were colleagues
and I said hey, you want to goto Haiti.
So actually our first triptogether, which became a love
story and then we got married afew months later, is because of
Haiti.
Speaker 1 (04:55):
Oh, okay.
Speaker 2 (04:56):
So it was a journey of a lifetime for both our
relationship and for ourbeginning to love Haiti.
Okay, that's wonderful.
So in many ways, you know, Godpointed us in that direction for
a reason.
I think, six months later, wewere married.
Speaker 1 (05:13):
Okay, okay, and on behalf of all the Asian people,
I want to thank you, both youand your husband, for all you
have done for the country.
I know that, you know you gaveyour sweat, you know it's a love
for the country.
Speaker 2 (05:30):
So I thank you for saying that, but I also thank
Haiti for giving me a start inglobal health and for giving me
my doctoral project, my romanceand marriage with my husband and
all of the beautiful food andexperiences and friends that
I've made.
So I think it was a mutual it'sa mutual thing.
(05:54):
I know that I've helped Haiti,but Haiti has also been a huge
gift for me, and now workingwith the students there you know
it's I feel like I'm helpingthe next generation of health
providers, health care providers, so I'm hoping that that in
some way helps the country and Istill owe you some black
horizon I think my whole familywants to come for the food you
(06:16):
know definitely.
Speaker 1 (06:17):
I'm gonna make it happen now.
So what you have for?
Speaker 2 (06:21):
us today.
So one of the things that I'mpassionate about and actually
right now I'm working on a on astudy of of parents in Guatemala
, because I haven't been able totravel to Haiti, so I have been
going to Guatemala is thiswhole idea of caregiving.
So right now I'm working, as Istill work with children as well
, but my my main focus is home,health and working with adults,
(06:46):
older adults.
But working with parents hasbeen a project that I've been
working on, and it just bringsto me both the importance of
caring for the caregiver and howmuch stress caregivers whether
it be the parent of a child withmultiple disabilities or a
(07:07):
disability, or whether it's anadult or young adult or older
adult caring for somebody elsethat I feel passionate about
making sure we're always lookingafter the caregiver.
As I like to say, you know, thecaregivers are our clients too.
Yes, we cannot enter into arelationship with a client
(07:30):
without, at some point, engagingwith a caregiver, whether it be
a paid caregiver, an unpaidcaregiver, a family member,
spouse, neighbor, whatever it is.
We're going to somehow engagewith that person.
For the most part, and we mustconsider them as part of our
therapeutic relationship andeven ourselves.
Speaker 1 (07:49):
So you know, you know , at some point in our lives
absolutely we're gonna fall intothat category too, absolutely
and you could be, you know,squeezed from both sides.
Speaker 2 (07:58):
You may be a parent, but you're also caring for your
own parent so there's manypeople that are under this type
of stress.
It can be a positive experiencetoo, caring for somebody.
Let's not make it negative.
You know always negative but itcan be a very positive
experience.
But it's also a point ofconcern for us as health care
(08:20):
professionals, especially forcaregivers mental health.
Speaker 1 (08:23):
Mm-hmm.
Speaker 2 (08:24):
Because it's incredibly stressful.
Speaker 1 (08:26):
It is.
It is, and sometimes you knowyou find people who will be
taking care of their parents,you know, or sick child, or whom
have you and don't have thesupport you know to kind of like
help them with their mentalhealth Right.
So now everything falls on yourshoulder.
(08:48):
You have to take care for yoursick parents.
Now you have your family onyour own, so you have your job
that to go to.
Speaker 2 (08:55):
You have this and that, in fact, 60% of caregivers
are working full time, soimagine the stress of having to
try to and a lot of them don'teven tell their employers, so
they have the stress of takingcare of the client or their
family member, and then they'realso trying to work.
Speaker 1 (09:13):
Yeah, and so I feel that sometimes they should be
able to find people that theycan rely on, people, that if
they got to a point where theyneed some assistance, where they
can easily call to say you knowwhat, can I have two hours or
three hours?
(09:34):
So while I'm taking care for mysick mother, my sick father,
that would be a good thing tofind somebody to give me like a
two or three hours with speechyou know, with my child.
Speaker 2 (09:45):
You know, I think that's the point of of
contention with a lot of peoplewho are caregiving is they feel
guilty if they have somebodyelse care for their child or for
their parent or whatever they.
It makes them feel inadequateor they're stressed about it.
They're worried.
Will that person take care ofmom or dad, like I do?
(10:07):
but it's it so they often resistyou know, having you know
outside help because they feelguilty or they feel like I'm.
I'm not a you know, I'm alesser person if I let somebody,
a stranger, come in and takecare of my parents or my my
sister my brother.
But it's something we need towork.
(10:28):
We need to work with them onnow.
The first thing is develop thetrust right.
So we want to obviously get theclient to trust us right away.
You want to.
First thing is to make therelationship with the client.
Second thing is you've got toform the relationship with the
caregiver and there can bechallenges with that.
(10:48):
I'm sure you've hadconversations, as I had, where
the caregivers or the parent orwhatever is stressed and maybe a
little angry or frustrated.
So sometimes it can bedifficult to make that
relationship but, it isimportant to try to make it, but
it's doable.
It may be difficult but it'sdoable.
Patience and empathy and timeand giving them a chance to talk
(11:15):
maybe giving them time, a phonecall or just time for them is
really important to build thatrelationship.
Speaker 1 (11:24):
And sometimes you may be taking care of a person
where you have to give up onyour own life, literally.
Speaker 2 (11:31):
You know like.
Speaker 1 (11:32):
I've seen people who had to quit their job.
Speaker 2 (11:34):
Especially if you're taking care of somebody with,
say, dementia, where they haveto be supervised 100% of the
time.
They may be having problems withsleep, they may be getting up
at night, they're not safe to bealone.
It can be incredibly stressfulfor a caregiver in that
situation because they're notable to trust that their family
(11:57):
member is going to be safe,listen or remember instructions.
So it's incredibly, incrediblystressful.
So what I try to practice is,when I go into, especially when
I do home health, is, if there'sa caregiver there whether it be
the son or daughter or spouseor, you know, could be anyone
(12:17):
really could be a partner orfriend is I'm going to ask them
how are you doing?
I'll do my assessment of myclient, but I'm also going to
say how are you doing and justlet them know that I have
empathy for them and I'm goingto encourage them maybe not day
one, but over time start lookingfor options, like you just said
, for a couple of hours, two orthree hours, to give them a
(12:42):
break and, as I feel ashealthcare professionals, it's
part of our job to, to you know,make referrals and try to help
them get the services that theyneed yes, yes indeed.
Speaker 1 (12:53):
And when you say, when you go to the home, you,
you actually know not.
You know that you deal for thepatient, but you also want to
make sure that you check on thatcaregiver, and sometimes even
if it is a paid one.
Speaker 2 (13:06):
I remember yes, when I used to come.
That's a really good point.
Speaker 1 (13:09):
Yes, I remember when I used to come back home visit
as a social worker.
So it's like when I go to theirhome and I see their home
attendant, bear in mind for youand I or other people
professional in the field.
They may have the skill, theknowledge to deal with a
difficult patient, butoftentimes those home attendants
(13:31):
, they don't have the knowledgeand the skills that many of us
have.
And here you are.
They have to deal with apatient who suffers with
dementia.
Speaker 2 (13:40):
And they may not be getting enough sleep, exactly.
So, they may be up a lot or theperson may be getting up at
night, or they have to go to thebathroom, or they just need to
be with them.
So you have to watch out forthe signs of burnout in paid
caregivers.
Speaker 1 (13:55):
Yeah, it's a job, but at the same time talking, so it
can be stressful.
Speaker 2 (14:00):
Yeah, and I mean sometimes people employ you know
, people and they're not beingfair, they're not making sure
that they're getting enough timeoff or sleep or things like
that.
So you want to be on alert forcaregivers.
Um, I don't want to make it toodramatic, but a caregiver who's
very, very stressed and notgetting enough sleep and not
taking care of themselves aremore at risk for getting for
(14:22):
losing their patients, gettingfrustrated or more at least
getting you know to getting intodealing with a mental problem
yes, like stress, depression,anxiety and that can lead to a
mental health issue for sure fora caregiver, where they're
going to actually go down theroad of getting a diagnosed
condition.
(14:43):
However, being observant and Ithink you spoke about doing your
visits too like just openingyour eyes to not just zeroing in
on your client but just kind ofwatching how things are going
in the, in the environment andthat doesn't necessarily mean
just the home it could be you'rein the hospital with visiting a
(15:06):
client, or you're in anassisted living facility
visiting a client, or you knowanother type of residence,
residential facility.
Just watching and seeing what'sgoing on.
You might pick up somethingfrom Dynamics.
There might be some tensiongoing on or you're going to pick
up that caregiver who's just soburned out, they're exhausted,
they're not taking care of theirhealth.
(15:27):
I've been in a situation notthat long ago actually in the
past few months where acaregiver told me she didn't
have insurance, she had a highblood pressure, she couldn't go
to the doctor and she wasactually asking me to take her
blood pressure during the visitand I was at home to find out
that her you know she had quitesevere hypertension and she
(15:48):
wasn't taking care of it.
But she's just working andworking and working, support her
family and neglecting and thiswas a paid caregiver Also
families as well.
There's been other situationswhere I've noticed another
client, a gentleman withAlzheimer's.
They just moved into anapartment.
So they just gave up their home, moved into an apartment.
(16:10):
So the spouse was alreadyfeeling sad and, you know,
depressed about leaving hertheir home, living in now a one
bedroom apartment, which was agood thing in a way because it
was, you know, more accessible.
But I turned to her and I saidhow are you doing?
And she said terrible, and I'mnot.
I haven't been to any of mydoctor's appointments in the
(16:32):
past year, not one.
So she missed all of herappointments.
Primary care cardiologist.
Speaker 1 (16:41):
Which is not good, yeah, endocrinologist.
Speaker 2 (16:43):
You know all of those .
She just kept canceling herappointments and it was only
that I looked at her and askedthat question that she opened up
and said right away yeah, I'mnot taking care of myself at all
.
Speaker 1 (16:58):
I haven't done to any of my doctors.
Speaker 2 (16:59):
That's not good, because you have to be healthy
in order to invest in you knowin others, right, and what I
always say is if the caregivergoes down, the whole care of
that patient may collapse.
The whole situation might justimplode, because now if the
caregiver ends up in thehospital, this client is going
to end up having to go intoresidential care or some type of
(17:21):
24-hour care, so it can reallypull the whole situation down if
we don't pay attention to thecaregiver.
Speaker 1 (17:29):
I know a girl who's taking care of her father, and
the mother lives in the housetoo.
But there was a sick brotherwho got into the picture and
unfortunately the sick brotherlives in a different state, so
where she had to travel to be ofassistance to that brother
(17:51):
while she's taking care of bothof her parents, of assistance to
that brother while she's takingcare of both of her parents.
So one day the girl called meand said beatrice, I don't know
what to do, it's so stressful.
And I know what she was dealingwith because the tension, the
stress you know.
So you get two differentdirections, like you know, and
she started crying over thephone because she didn't know
(18:13):
what to do.
It was way too much.
She had too much in her plate,absolutely you know to deal with
.
So you live in New York, so nowyou have another sick person
living in another state whereyou have to travel close to
three hours to be of assistance,and you have your own parents
and you have a small child.
Speaker 2 (18:33):
You bring up a really good point Like caregiving at a
distance is very difficult.
You know, some of us have beenthere when we're caregiving for
somebody far away very difficult, but then also caregiving close
you know where you're livingwith the person.
I mean, in every situationthere's risks and we have to be
attentive.
Speaker 1 (18:52):
And sometimes it depends on the condition of the
person.
I know people who are takingcare of their sick parents so
they cannot even go out for asocial event, right?
Because if they go out, so thatsick person cannot be left
alone and oftentimes they maynot have the money to pay for a
sitter to stay with that personyeah, I've seen situations where
(19:15):
people are going out andleaving the person in bed with
you know the rails up becausethey can't afford a caregiver.
Speaker 2 (19:22):
I was one situation where the the client's- daughter
was going to work that iswhiskey too.
Going to work for six, seven,eight hours and leaving mom in
bed.
Work for six, seven, eighthours and leaving mom in bed and
using absorbent diapers orwhatever to try to prevent any
accidents.
But it was because of herfinancial situation.
(19:44):
She was supporting the two ofthem and I believe there was a
child as well and she had towork.
So we are not doing our jobs ifwe're not trying to help people
find resources in thatsituation.
Speaker 1 (19:55):
Because everyone's at risk, because you know, if
anything were to happen to thatsick person, she would have been
in trouble.
Speaker 2 (20:04):
Absolutely.
If there was a fire or anythinglike that and I did have to
have that conversation with herI actually brought in a social
worker to help her get resourcesbecause I didn't want to come
down hard on her, because I knewwhy.
She was doing it, very caringto her mom, but that was too
risky.
Speaker 1 (20:21):
That was very risky.
Yeah, you know, because youknow when you get into trouble.
Unfortunately, the law will nottake time to understand that
you didn't have the moneyExactly.
Speaker 2 (20:32):
The law is sort of black and white on that issue.
You left somebody in bed.
Yeah, and that will beconsidered, I think, as elder
abuse or neglect, so it is up tous to sort of be observant,
watch out for things and try toreally educate and speak to
those caregivers.
I want to also bring up thesubject of you know your typical
(20:55):
caregiver is, you know, aroundabout 50s, looking after an
older parent, or it could be thespouse, obviously, of any age.
I also want to bring upchildren being caregivers or
young adults.
You know adolescents sometimesbecause I have been in that
situation where children arehelping either their parents or
(21:16):
their grandparents and are beingput in a position of
responsibility.
Also may not be safe, butthey're really caring and
they're doing it for all theright reasons and they might
actually be really good at it.
But also you want to watch outfor those children that the
stress and the strain and therisk for mental illness, also
(21:37):
the risk for trauma.
If they are exposed to maybesomebody with dementia, with
behavior issues, or maybe theperson they're caregiving falls,
it gets hurt.
You know that there could be arisk for trauma for those
children or young people.
Speaker 1 (21:54):
You know that there could be a risk for trauma for
those children or young people.
Yeah, I'm glad that youmentioned that, because way too
often I've seen it like where,again and again, people have
financial issues and financialissues can be a serious issue
for many people, absolutely.
Because, when you don't have it,you don't have it.
I got it but in the meanwhile.
(22:14):
So if you are, you know, soit's like you don't have the
financial means to pay a sitterto come and stay with those kids
.
I've seen kids you know like 12years old, though I don't think
there is a specific age toreally leave a child you know
alone right however, if anythingwere to happen, then that's
(22:36):
where you know everything gonnabe in black and white.
So if I have a 12 years old andI have a six years old or a
seven years old, I cannot leavethem alone, right?
Speaker 2 (22:48):
or I should not be leaving them alone or people may
be leaving them with an oldergrandparent who's not capable,
and both are trying to take careof each other, but neither are
doing a very good job, so I'veseen a case like that.
Speaker 1 (23:01):
You know where the grandmother was legally blind.
On paper she was legally blind.
They claimed that she could see.
But I'm like, what you thinkand what is actually on paper
are two different things.
Speaker 2 (23:17):
And I think that, sadly, we have to do a good job
at educating them about what ifsomething were to happen.
You know, okay, things aregoing well now, but what if
there's a fire?
What if there's a fire?
What if there's a weather event?
I mean, we've seen severeweather, things right, where
tornadoes drop down sometimes iteven happened to us, you know
or there's all of a sudden, youknow, a hail storm.
(23:39):
You have to think about thosesituations.
Speaker 1 (23:41):
Especially with kids.
You know fire, it's easy, youknow, for them to set, you know
the place into fire.
You know it's like you knowthey go and warm up something in
the microwave.
Yes, don't know.
You know exactly that traycannot be placed in the
(24:03):
microwave before even know it.
So it's an issue.
So now?
So that's when you're gonnahave to answer to all of the
questions and, uh, it's hard I'mnot trying to be hard or not to
understand people's situations.
Speaker 2 (24:14):
Most of the time it's financial.
As you said, people have towork, they can't get time off,
they can't get family medicalleave unless it's unpaid.
So they're trying to make itall.
They're trying to keep all theballs in the air at the same
time, juggling, and something'sgoing to drop, either their
health or the person they'retaking care of, or their kids or
(24:35):
whatever.
So, yeah, it's really importantto be observant, to look out
for those risks and to bring inother professionals or resources
or try to help them connectwith other institutions that can
help them.
Speaker 1 (24:48):
You know that could be a serious burden, While
financially you didn't have thecapability to spend or have the
money to to spend or afford todo this or that.
Now here you are dealing with alegal situation where you're
gonna have to find money to payfor a lawyer exactly, exactly
now.
Speaker 2 (25:07):
There are um, right now I'm not sure what will
happen with changing governmentsand things, but right now there
are resources in New York andthe state that I live in,
connecticut, where you canbecome a paid caregiver for your
family member.
It's not always perfect andit's not always available to
everyone, but it's certainlysomething that people should
(25:30):
consider, that they they canbecome.
You know, get some paid, orsomebody in the family can be
paid to be a caregiver.
Speaker 1 (25:39):
Yeah, I think it's the same for New York.
Speaker 2 (25:41):
Yeah, I did look it up, and you do have it in New
York too.
Speaker 1 (25:43):
Yeah, except you know , like for the wife, you know if
it is your husband.
Speaker 2 (25:46):
Right, it can't be a spouse.
We just got to take care ofthose husbands, no matter what.
Speaker 1 (25:51):
So you know that was part of the deal, the contract,
yes, that was part of thecontract, so it's like you know.
So that's your burden, that'syour responsibility.
Speaker 2 (26:03):
The government is not going to pay for you to take
care of your husband or yourwife.
Speaker 1 (26:09):
But even you know, I've seen, you know like family
members who took on that job totake care of their sick parents
but still have to do theirregular job.
Speaker 2 (26:21):
Yeah.
Speaker 1 (26:24):
So it's constantly a burden.
So, and I feel that if you haveyour regular job and sometimes
people, some of them, may havemore than one job, absolutely
regular job, and sometimespeople, some of them, may have
more than one job, absolutely soit's like you know that it's
not easy for you to do.
You know, just leave the dooropen for somebody to get the
help from somebody else becausethe government is paying for it.
(26:47):
so, again and again, I'm nottrying to get into people
business or dictate people onright, you know what to do but
uh, if I'm already walking, youknow like full time and I know
that you know so it's gonna be aburden because you don't want
to burn out right.
Speaker 2 (27:07):
Sooner or later you're gonna feel it either
mentally or physically, yes, orspiritually or emotionally it's
going to take an effect,especially when it goes long
term.
You know years, one year turnsto two, turns to five.
You know it can be very, veryhard on the, on the caregiver.
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