00:00:00.450 --> 00:00:03.600
- [Promoter] Family caregivers
contribute over $600 billion

00:00:03.600 --> 00:00:05.550
to the economy in unpaid labor.

00:00:05.550 --> 00:00:08.280
It's the work-from-home
job nobody talks about.

00:00:08.280 --> 00:00:10.260
Families are already doing the work.

00:00:10.260 --> 00:00:12.450
Aidaly just gets you paid for it.

00:00:12.450 --> 00:00:14.100
Getting started is easy.

00:00:14.100 --> 00:00:17.400
First, visit aidaly.com
and submit your information

00:00:17.400 --> 00:00:19.380
to qualify for a program.

00:00:19.380 --> 00:00:20.460
Complete your training,

00:00:20.460 --> 00:00:22.860
and start getting the support you deserve.

00:00:22.860 --> 00:00:24.420
Join a peer-led community

00:00:24.420 --> 00:00:26.730
who will support you
every step of the way.

00:00:26.730 --> 00:00:29.313
Visit aidaly.com to learn more.

00:00:30.840 --> 00:00:33.330
- [Promoter] Carewell.com
is the one-stop shop

00:00:33.330 --> 00:00:35.460
for all your caregiver needs,

00:00:35.460 --> 00:00:38.790
with knowledgeable care
specialists available 24/7

00:00:38.790 --> 00:00:41.880
and great prices on thousands
of quality products.

00:00:41.880 --> 00:00:43.650
We focus on helping caregivers

00:00:43.650 --> 00:00:46.260
so you can focus on your loved ones.

00:00:46.260 --> 00:00:49.733
Carewell.com, we see you.

00:00:49.733 --> 00:00:51.390
(upbeat music)

00:00:51.390 --> 00:00:52.560
- Hi, my name is Sierra.

00:00:52.560 --> 00:00:54.090
- I'm Abraham.
- I'm Maya.

00:00:54.090 --> 00:00:56.040
- I've been driving with
Uber for three years.

00:00:56.040 --> 00:00:58.080
- 4,000 trips.
- 6,000 trips.

00:00:58.080 --> 00:00:59.040
- Work when you want.

00:00:59.040 --> 00:01:00.237
Take breaks when you want.

00:01:00.237 --> 00:01:01.170
- I'm the boss.

00:01:01.170 --> 00:01:03.270
- I will not work on my birthday.

00:01:03.270 --> 00:01:04.743
- When I don't feel like
talking to people anymore,

00:01:04.743 --> 00:01:06.990
it's so easy to just switch to delivery.

00:01:06.990 --> 00:01:09.918
- Turn on my smooth
jazz and just let it go.

00:01:09.918 --> 00:01:11.026
Yeah.

00:01:11.026 --> 00:01:12.006
- Boom!

00:01:12.006 --> 00:01:13.260
(driver speaks foreign language)

00:01:13.260 --> 00:01:14.730
- Be there for your kid when they're sick.

00:01:14.730 --> 00:01:16.142
- You can make your own schedule.

00:01:16.142 --> 00:01:20.309
♪ Uber, I can be my own boss, yes ♪

00:01:21.750 --> 00:01:23.910
- [Promoter] Homethrive is
transforming the way we care,

00:01:23.910 --> 00:01:27.540
making it smarter, easier, and
more rewarding for everyone.

00:01:27.540 --> 00:01:30.540
Whether your employees care
for a loved one due to age,

00:01:30.540 --> 00:01:32.640
disability, or medical condition,

00:01:32.640 --> 00:01:35.250
our intuitive online
platform connects caregivers

00:01:35.250 --> 00:01:38.040
to personalized advice
as well as life support

00:01:38.040 --> 00:01:40.890
from our team of compassionate
caregiving experts.

00:01:40.890 --> 00:01:43.530
We help your employees
discover a better way forward

00:01:43.530 --> 00:01:45.720
that prioritizes their loved one's care

00:01:45.720 --> 00:01:47.190
and their own wellbeing

00:01:47.190 --> 00:01:49.770
so they can thrive at work and at home.

00:01:49.770 --> 00:01:53.167
Learn more at homethrive.com/tv.

00:01:53.167 --> 00:01:55.750
(upbeat music)

00:01:59.350 --> 00:02:01.600
(no audio)

00:02:07.466 --> 00:02:10.049
(somber music)

00:02:16.644 --> 00:02:20.061
(somber music continues)

00:02:26.580 --> 00:02:28.230
- When you have a baby, you know,

00:02:28.230 --> 00:02:30.600
you have all of these
dreams for your child,

00:02:30.600 --> 00:02:33.603
and they're going to learn
how to walk and talk.

00:02:37.770 --> 00:02:39.720
And then they're gonna
go off to kindergarten

00:02:39.720 --> 00:02:43.950
and middle school and they'll
have friends, and be active,

00:02:43.950 --> 00:02:47.043
and play in sports, and
find their interests.

00:02:49.110 --> 00:02:51.030
And then the assumption is
they'll go to high school

00:02:51.030 --> 00:02:54.063
and graduate and then
hopefully, off to college.

00:02:56.400 --> 00:02:59.193
It's this whole big ball of dreams.

00:03:00.180 --> 00:03:03.690
But then you have a child
with profound disabilities,

00:03:03.690 --> 00:03:07.468
and it's just like this
ball blows up and shatters.

00:03:07.468 --> 00:03:11.040
(glass clinking)
(tense music)

00:03:11.040 --> 00:03:13.710
And so, you have this choice to make.

00:03:13.710 --> 00:03:16.470
You can choose to sweep
away that broken glass

00:03:16.470 --> 00:03:19.053
and start a new path
for you and your child,

00:03:20.400 --> 00:03:22.410
but it's not a familiar path

00:03:22.410 --> 00:03:25.050
and it's not a path that
many have to walk on

00:03:25.050 --> 00:03:27.573
so people don't understand.

00:03:31.380 --> 00:03:33.210
And then you wake up to the realization

00:03:33.210 --> 00:03:35.760
that this world was not
made for your child,

00:03:35.760 --> 00:03:37.890
but you love him or her so much

00:03:37.890 --> 00:03:39.960
that you'll do whatever it takes

00:03:39.960 --> 00:03:42.960
to give them the best life possible.

00:03:42.960 --> 00:03:44.730
And so, you just keep going.

00:03:44.730 --> 00:03:47.520
You keep moving step by step,

00:03:47.520 --> 00:03:50.193
even though you can't see that far ahead,

00:03:52.440 --> 00:03:54.960
you have to keep moving forward,

00:03:54.960 --> 00:03:56.433
because your child needs you.

00:03:57.450 --> 00:04:00.930
It's a lonely path and often
it is you, the caregiver,

00:04:00.930 --> 00:04:04.413
paving this path all by
yourself for your child.

00:04:08.599 --> 00:04:11.599
(suspenseful music)

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I'm part of a blended family.

00:04:18.150 --> 00:04:20.460
My husband Ryan and I have eight children

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ranging in age from 18 to five years old.

00:04:24.750 --> 00:04:28.110
He brought three children to
the marriage and I brought four

00:04:28.110 --> 00:04:31.425
and we had a baby together in 2015.

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(kids laughing)

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- This would've been a picture
of my late wife, Casey,

00:04:41.130 --> 00:04:43.590
shortly after our third child was born

00:04:43.590 --> 00:04:47.070
and she was diagnosed
just shortly after that,

00:04:47.070 --> 00:04:48.990
a couple months later

00:04:48.990 --> 00:04:51.668
and passed away just
five months after that.

00:04:51.668 --> 00:04:53.700
So, it was really quick, it's a whirlwind.

00:04:53.700 --> 00:04:55.350
- This is my late husband, Jason,

00:04:55.350 --> 00:04:57.390
and myself and our children.

00:04:57.390 --> 00:05:00.780
And he at this point had
been going through cancer

00:05:00.780 --> 00:05:02.310
for about two years.

00:05:02.310 --> 00:05:06.540
He would pass away a year later in 2010.

00:05:06.540 --> 00:05:08.370
They actually passed away four days-

00:05:08.370 --> 00:05:11.403
- Four days apart.
- Apart in August.

00:05:12.386 --> 00:05:15.750
(somber music)

00:05:15.750 --> 00:05:17.790
- I was really struggling shortly after,

00:05:17.790 --> 00:05:19.440
especially in August and September.

00:05:19.440 --> 00:05:22.230
I didn't really know what
to expect or what to do.

00:05:22.230 --> 00:05:23.580
Raising three kids on my own.

00:05:23.580 --> 00:05:25.590
One was still just a baby.

00:05:25.590 --> 00:05:28.710
I would write on the blog or
reach out to other widowers,

00:05:28.710 --> 00:05:31.380
but got really little input from them.

00:05:31.380 --> 00:05:32.940
So, when Jess reached out to me,

00:05:32.940 --> 00:05:36.210
I don't really think I had any intentions

00:05:36.210 --> 00:05:38.250
just to be able to grieve with somebody

00:05:38.250 --> 00:05:39.570
and have a better understanding

00:05:39.570 --> 00:05:42.270
and just have somebody to
talk to that can understand.

00:05:43.693 --> 00:05:46.276
(somber music)

00:05:47.280 --> 00:05:49.500
Yeah, I don't know that I had any idea

00:05:49.500 --> 00:05:51.333
what to expect with Luke.

00:05:52.380 --> 00:05:53.340
He was still in diapers,

00:05:53.340 --> 00:05:55.380
but we had two others
still in diapers too,

00:05:55.380 --> 00:05:57.570
you know, went into it blindly.

00:05:57.570 --> 00:05:58.950
Like I was in love with this woman

00:05:58.950 --> 00:06:03.950
and I was led to this life
and I was gonna embrace it

00:06:04.050 --> 00:06:06.153
and had no idea what was in store.

00:06:07.179 --> 00:06:09.762
(somber music)

00:06:11.910 --> 00:06:13.620
- Lucas was my second child

00:06:13.620 --> 00:06:16.380
and at my 20-week ultrasound appointment,

00:06:16.380 --> 00:06:18.427
the technician got really
quiet and she said,

00:06:18.427 --> 00:06:20.250
"I'll be right back I
have to get the doctor."

00:06:20.250 --> 00:06:23.330
He just said, "We have
some really bad news.

00:06:23.330 --> 00:06:26.490
Your unborn child has severe hydrocephalus

00:06:26.490 --> 00:06:29.670
and there's very little chance
that he or she will survive."

00:06:29.670 --> 00:06:31.050
We didn't know at the time.

00:06:31.050 --> 00:06:34.890
And that just became my personal journey

00:06:34.890 --> 00:06:38.940
of wrestling with my
faith and asking God why.

00:06:38.940 --> 00:06:42.840
And coming to appease about

00:06:42.840 --> 00:06:44.580
putting the baby in the Lord's hands,

00:06:44.580 --> 00:06:48.270
and Lucas was born on August 12th, 2004.

00:06:48.270 --> 00:06:51.544
And this was just a few days after birth.

00:06:51.544 --> 00:06:54.127
(somber music)

00:06:57.090 --> 00:06:59.460
It was so shocking to me
that I had a live baby.

00:06:59.460 --> 00:07:02.100
So, I did all of my
grieving when I was pregnant

00:07:02.100 --> 00:07:03.780
and then he came out alive

00:07:03.780 --> 00:07:06.420
and I just didn't care
what came along with that.

00:07:06.420 --> 00:07:08.280
Like my baby was alive.

00:07:08.280 --> 00:07:11.130
I'm elated, I don't care what comes along

00:07:11.130 --> 00:07:13.020
with Lucas at this point,

00:07:13.020 --> 00:07:15.240
but I'm going home with my baby.

00:07:15.240 --> 00:07:16.490
That's all that mattered.

00:07:21.060 --> 00:07:25.020
When Lucas was born, he
was this miracle baby,

00:07:25.020 --> 00:07:28.110
because he wasn't supposed
to live and then he made it.

00:07:28.110 --> 00:07:30.810
People were thrilled and
excited to come and help me

00:07:30.810 --> 00:07:33.840
with this child who God had saved.

00:07:33.840 --> 00:07:36.422
And so, this lasted for a couple of years.

00:07:36.422 --> 00:07:37.498
Yeah, you want it?

00:07:37.498 --> 00:07:38.331
- I want it.

00:07:38.331 --> 00:07:41.175
- [Jess] You do, Hot Stuff.

00:07:41.175 --> 00:07:43.592
Luke. keep going, keep going.

00:07:46.381 --> 00:07:47.214
Good job.

00:07:54.974 --> 00:07:56.606
♪ Running, running, running ♪

00:07:56.606 --> 00:07:58.321
♪ Running, running, running ♪

00:07:58.321 --> 00:08:00.821
♪ Now we stop ♪

00:08:01.982 --> 00:08:04.649
(kids chatting)

00:08:07.717 --> 00:08:10.134
(TV playing)

00:08:11.433 --> 00:08:12.780
Hey, Maya.

00:08:12.780 --> 00:08:13.613
- [Maya] Yeah.

00:08:13.613 --> 00:08:14.700
- [Jess] His juice is made.

00:08:14.700 --> 00:08:16.050
It's in the fridge.

00:08:16.050 --> 00:08:17.160
- [Maya] Okay.

00:08:17.160 --> 00:08:18.210
- Probably shake it up though

00:08:18.210 --> 00:08:20.293
before you give it to him, please.

00:08:20.293 --> 00:08:21.460
- [Maya] Okay.

00:08:22.549 --> 00:08:24.966
(TV playing)

00:08:31.833 --> 00:08:34.666
(people chatting)

00:08:37.800 --> 00:08:40.320
- Lucas requires 24-hour monitoring.

00:08:40.320 --> 00:08:42.180
I mean, we gotta keep
track of him all the time

00:08:42.180 --> 00:08:43.653
and you never shut it off.

00:08:45.090 --> 00:08:50.090
- His needs include primarily
non-verbal communication.

00:08:51.150 --> 00:08:53.940
He needs help in every aspect of his life.

00:08:53.940 --> 00:08:57.963
Bathing, eating, moving
from one place to another.

00:08:58.812 --> 00:08:59.645
Okay.

00:08:59.645 --> 00:09:02.130
He'll never grow out of these needs.

00:09:02.130 --> 00:09:06.870
And not only that, as he ages
and goes through puberty,

00:09:06.870 --> 00:09:09.330
that's where it's becoming
extremely difficult,

00:09:09.330 --> 00:09:12.337
because of the aggression that
we're seeing come out in him.

00:09:12.337 --> 00:09:14.593
(hands banging)

00:09:14.593 --> 00:09:16.226
(vacuum cleaner whirring)

00:09:16.226 --> 00:09:19.059
(Lucas screaming)

00:09:20.796 --> 00:09:24.009
(hands banging)

00:09:24.009 --> 00:09:26.842
(Lucas screaming)

00:09:27.690 --> 00:09:30.600
- We watched Luke as he became older,

00:09:30.600 --> 00:09:33.930
and stronger, and more strong-willed.

00:09:33.930 --> 00:09:36.060
Everything changed.

00:09:36.060 --> 00:09:38.340
Luke wasn't the sweet little boy anymore,

00:09:38.340 --> 00:09:42.630
and he'd bite, and scratch, and
hit, and we saw that happen.

00:09:42.630 --> 00:09:45.289
It felt almost like overnight.

00:09:45.289 --> 00:09:48.122
(Lucas screaming)

00:09:49.350 --> 00:09:51.540
- The behaviors changed

00:09:51.540 --> 00:09:55.020
and he became more aggressive
and more difficult,

00:09:55.020 --> 00:09:56.853
and the screaming intensified.

00:09:57.758 --> 00:10:00.591
(Lucas screaming)

00:10:02.490 --> 00:10:04.560
There's no joy in it when your child

00:10:04.560 --> 00:10:06.510
is just screaming at you all day long

00:10:06.510 --> 00:10:08.820
and you can't figure out what's wrong,

00:10:08.820 --> 00:10:10.293
he can't tell you.

00:10:11.880 --> 00:10:13.260
- You feel like you're in

00:10:13.260 --> 00:10:15.750
this crazy state of mind all the time.

00:10:15.750 --> 00:10:19.710
And then home is supposed
to be a sanctuary.

00:10:19.710 --> 00:10:21.510
It just doesn't feel that way.

00:10:21.510 --> 00:10:23.310
So, it builds and builds and builds

00:10:23.310 --> 00:10:25.680
and there's nowhere for it to go.

00:10:25.680 --> 00:10:28.953
So, we're just hanging on by
a thread most of the time.

00:10:30.270 --> 00:10:35.207
- And it's those days when
he's screaming nonstop

00:10:36.150 --> 00:10:38.910
and my anxiety levels start to build

00:10:38.910 --> 00:10:40.770
and I don't know what the solution is,

00:10:40.770 --> 00:10:45.180
because when you have a
16-year-old screaming all day long

00:10:45.180 --> 00:10:48.423
and shaking his gait, and
trying to break down the walls,

00:10:49.440 --> 00:10:50.850
the whole family is sort of

00:10:50.850 --> 00:10:52.710
like walking on eggshells at that point,

00:10:52.710 --> 00:10:54.870
because we're all trying
to make it better.

00:10:54.870 --> 00:10:59.800
- So, if you're in this constant
state of unknown anxiety,

00:11:00.660 --> 00:11:02.670
like what's gonna happen next?

00:11:02.670 --> 00:11:04.260
What could happen next?

00:11:04.260 --> 00:11:06.450
You're living on the edge all day

00:11:06.450 --> 00:11:10.650
in this fight or flight mode
that you have no control over

00:11:10.650 --> 00:11:13.170
and you feel like you're
completely outta control

00:11:13.170 --> 00:11:14.730
all day, every day.

00:11:14.730 --> 00:11:18.510
So it affects sleep, it
affects your attitude.

00:11:18.510 --> 00:11:22.470
And you know that fear that's
in our minds constantly,

00:11:22.470 --> 00:11:24.270
it's just always bubbling.

00:11:24.270 --> 00:11:25.650
What's Luke gonna do next?

00:11:25.650 --> 00:11:27.270
And it's not his fault.

00:11:27.270 --> 00:11:29.640
And that's the hardest part,
is it's nobody's fault.

00:11:29.640 --> 00:11:31.800
It's not our fault, it's not his fault,

00:11:31.800 --> 00:11:33.810
it's just part of our life.

00:11:33.810 --> 00:11:37.275
As caregivers, we don't have a choice.

00:11:37.275 --> 00:11:39.858
(somber music)

00:11:45.360 --> 00:11:48.570
- Being a caretaker for
somebody with profound needs

00:11:48.570 --> 00:11:53.430
is like sacrificing your
life for another person.

00:11:53.430 --> 00:11:54.750
That sounds extreme,

00:11:54.750 --> 00:11:57.600
but when you're taking care of

00:11:57.600 --> 00:12:01.410
somebody else's physical
and emotional needs,

00:12:01.410 --> 00:12:06.410
24 hours a day, seven days
a week, 365 days a year,

00:12:06.600 --> 00:12:08.460
when that person is your child,

00:12:08.460 --> 00:12:10.170
of course, you love that child

00:12:10.170 --> 00:12:11.490
more than anything in the world,

00:12:11.490 --> 00:12:15.930
and you are more than
willing to sacrifice,

00:12:15.930 --> 00:12:18.390
but that doesn't make it any easier.

00:12:18.390 --> 00:12:22.420
People don't, probably
just can't comprehend

00:12:24.600 --> 00:12:28.230
just the amount of like constant stress

00:12:28.230 --> 00:12:31.980
that you're under when you are caregiver,

00:12:31.980 --> 00:12:35.403
- You're constantly in some
form of a survival mode.

00:12:36.509 --> 00:12:39.960
And when that happens for
years on years upon years,

00:12:39.960 --> 00:12:42.300
it weighs on you and
it begins to tear away

00:12:42.300 --> 00:12:44.043
at every aspect of your life.

00:12:45.025 --> 00:12:48.630
And your mental health is going to change.

00:12:48.630 --> 00:12:50.881
- You're like trapped.

00:12:50.881 --> 00:12:55.687
It's very lonely, very lonely.

00:12:57.822 --> 00:13:00.989
(bristles scratching)

00:13:04.174 --> 00:13:06.924
(clips snapping)

00:13:08.520 --> 00:13:12.240
- Being a parent caregiver
puts you at more risk

00:13:12.240 --> 00:13:16.950
for anxiety, depression,
and chronic stress.

00:13:16.950 --> 00:13:19.590
Caregiving in general is stressful.

00:13:19.590 --> 00:13:21.180
Parent caregiving is stressful,

00:13:21.180 --> 00:13:23.883
because it never stops, it's 24/7.

00:13:26.280 --> 00:13:28.020
There are studies that show that

00:13:28.020 --> 00:13:30.420
the more support that the child needs

00:13:30.420 --> 00:13:32.100
with their daily living activities,

00:13:32.100 --> 00:13:34.530
the more stressful it is for the parents.

00:13:34.530 --> 00:13:37.560
But overall, we do see
that parent caregivers

00:13:37.560 --> 00:13:39.300
have mixed feelings.

00:13:39.300 --> 00:13:42.270
And even though that
they adore their children

00:13:42.270 --> 00:13:45.900
and they love their children,
they can still feel stress.

00:13:45.900 --> 00:13:48.780
Professionals will say, "You
need to practice self-care."

00:13:48.780 --> 00:13:52.800
But what we really need is
a way to allow the families

00:13:52.800 --> 00:13:54.780
to get the self-care that they desire.

00:13:54.780 --> 00:13:58.620
If your child requires
additional services and supports,

00:13:58.620 --> 00:14:00.690
life doesn't stop.

00:14:00.690 --> 00:14:03.193
We can't just put this on hold,

00:14:03.193 --> 00:14:05.520
it's a priority and a necessity.

00:14:05.520 --> 00:14:08.070
So, your self-care does take a back seat.

00:14:08.070 --> 00:14:12.273
And if we don't provide the
missing piece of the puzzle,

00:14:13.110 --> 00:14:14.970
which is communities and resources,

00:14:14.970 --> 00:14:16.770
then we're not gonna be
able to see these parents

00:14:16.770 --> 00:14:19.560
ever get self-care that they desire.

00:14:19.560 --> 00:14:20.393
Big bite.

00:14:28.088 --> 00:14:30.671
(saw whirring)

00:14:38.550 --> 00:14:40.710
- We call it a barn, but
it's just kind of a garage.

00:14:40.710 --> 00:14:42.060
It's just my getaway.

00:14:42.060 --> 00:14:44.280
It's a makeshift workshop.

00:14:44.280 --> 00:14:47.340
I come out here and turn the
music on, put my headphones in,

00:14:47.340 --> 00:14:49.380
and I can get away from everything

00:14:49.380 --> 00:14:50.880
that's going on inside the house

00:14:50.880 --> 00:14:53.430
or everything that's
going on inside my head.

00:14:53.430 --> 00:14:56.730
I can just focus on what I'm
working on in that moment

00:14:56.730 --> 00:14:59.128
and just drown everything else out.

00:14:59.128 --> 00:15:01.711
(saw whirring)

00:15:04.122 --> 00:15:06.900
So, if I can come out and
spend 30 minutes out here,

00:15:06.900 --> 00:15:09.840
it feels like a half-day rejuvenation.

00:15:09.840 --> 00:15:12.750
So, I can go back in, regrouped,

00:15:12.750 --> 00:15:15.300
ready to face whatever's
coming at me at the house.

00:15:18.475 --> 00:15:21.142
(ominous music)

00:15:24.000 --> 00:15:29.000
- I think physically, my heart
races numerous times a day,

00:15:30.090 --> 00:15:33.210
because that feeling of peace

00:15:33.210 --> 00:15:36.783
is so elusive and never comes.

00:15:38.485 --> 00:15:41.110
(ominous music)

00:15:41.110 --> 00:15:43.943
(Lucas screaming)

00:15:45.625 --> 00:15:48.292
(ominous music)

00:15:52.811 --> 00:15:57.811
I'm so aware that I need
to pursue peace in my life

00:15:57.960 --> 00:15:59.820
and I want it so desperately,

00:15:59.820 --> 00:16:02.970
but then the second I
walk back into my house,

00:16:02.970 --> 00:16:05.340
there's this high-pitched scream,

00:16:05.340 --> 00:16:07.928
like jolting me back to reality.

00:16:07.928 --> 00:16:11.400
(ominous music)

00:16:11.400 --> 00:16:14.820
This constant wrestling between

00:16:14.820 --> 00:16:18.060
knowing for my own health and wellbeing,

00:16:18.060 --> 00:16:20.730
I need to decrease the stress in my life.

00:16:20.730 --> 00:16:23.027
I need to get my heart rate down.

00:16:23.027 --> 00:16:25.230
I need to find peace,

00:16:25.230 --> 00:16:29.551
but having no idea how to
make that happen in my life.

00:16:29.551 --> 00:16:32.218
(ominous music)

00:16:39.189 --> 00:16:41.010
(ominous music continues)

00:16:41.010 --> 00:16:43.080
I feel it in my body a lot,

00:16:43.080 --> 00:16:45.630
because I think mentally I always think

00:16:45.630 --> 00:16:48.900
I can like overcome it.

00:16:48.900 --> 00:16:52.140
I know what to do, but
my body doesn't lie.

00:16:52.140 --> 00:16:56.250
And at 43 years old, my
body constantly aches

00:16:56.250 --> 00:16:58.050
and I am absolutely convinced

00:16:58.050 --> 00:17:00.420
that it's due to the stress in my life,

00:17:00.420 --> 00:17:03.540
my joints, my knees, my fingers.

00:17:03.540 --> 00:17:06.960
Like I'm 43 years old and
I'm in pretty decent shape

00:17:06.960 --> 00:17:09.540
and I eat healthy and
I take care of myself

00:17:09.540 --> 00:17:12.243
and my body always hurts.

00:17:14.047 --> 00:17:16.714
(bids chirping)

00:17:17.550 --> 00:17:19.023
There's not an answer.

00:17:20.130 --> 00:17:22.380
Like I said, I know the steps to take,

00:17:22.380 --> 00:17:26.550
but it doesn't alleviate
what goes on in our home.

00:17:26.550 --> 00:17:28.380
- You know, I went through these periods

00:17:28.380 --> 00:17:31.950
where I was in the ER twice in one week,

00:17:31.950 --> 00:17:33.570
because I thought I was
having a heart attack,

00:17:33.570 --> 00:17:36.030
because I couldn't catch my breath.

00:17:36.030 --> 00:17:39.030
And it was just this
constant build of anxiety

00:17:39.030 --> 00:17:40.800
that they couldn't even label it.

00:17:40.800 --> 00:17:42.247
You know, even when I was there I said,

00:17:42.247 --> 00:17:43.380
"It's not a heart attack.

00:17:43.380 --> 00:17:44.520
I know it's not my heart,

00:17:44.520 --> 00:17:46.579
but I can't control my breathing."

00:17:46.579 --> 00:17:49.246
(ominous music)

00:17:51.960 --> 00:17:53.647
So, then it would, they would just say,

00:17:53.647 --> 00:17:56.010
"Well, it's not your heart, you know,

00:17:56.010 --> 00:17:58.597
you gotta change something in your life."

00:17:58.597 --> 00:18:01.200
"Okay, you wanna come home with me

00:18:01.200 --> 00:18:02.490
and help me make that change?

00:18:02.490 --> 00:18:05.360
Because we can't make that change."

00:18:05.360 --> 00:18:08.027
(ominous music)

00:18:14.165 --> 00:18:17.665
(ominous music continues)

00:18:20.105 --> 00:18:22.890
- You know, you put your
kids first for everything,

00:18:22.890 --> 00:18:26.520
but when you've got so many appointments,

00:18:26.520 --> 00:18:28.592
and so many therapy sessions

00:18:28.592 --> 00:18:32.670
and people in and out of your
house to do this and do that,

00:18:32.670 --> 00:18:35.583
you kind of forget to
take care of yourself.

00:18:36.750 --> 00:18:39.420
- It's really hard to
have people preach about

00:18:39.420 --> 00:18:42.450
taking care of yourself,
looking out for you,

00:18:42.450 --> 00:18:43.860
making that me time.

00:18:43.860 --> 00:18:45.390
I'm like, "What me time?"

00:18:45.390 --> 00:18:48.720
You know, I sit down to read a book.

00:18:48.720 --> 00:18:51.540
I've gotta watch, you know,
my daughter's oxygen stats.

00:18:51.540 --> 00:18:53.730
If we don't have a nurse at home,

00:18:53.730 --> 00:18:55.620
I've gotta suction her,

00:18:55.620 --> 00:18:58.620
or I've gotta take my son to therapy,

00:18:58.620 --> 00:19:02.160
or I've gotta do therapeutic
activities with him.

00:19:02.160 --> 00:19:05.280
So, there just isn't time for you

00:19:05.280 --> 00:19:07.620
at the end of the day, it's all them.

00:19:07.620 --> 00:19:12.620
- The stress that had
started led to insomnia,

00:19:13.320 --> 00:19:17.250
severe mood swings, avoidance.

00:19:17.250 --> 00:19:22.200
And as I read the symptoms of PTSD,

00:19:22.200 --> 00:19:25.023
I realized, my God,
I'm going through this.

00:19:26.201 --> 00:19:29.853
- You have to find this
balance and you just can't,

00:19:30.720 --> 00:19:32.100
because there is no balance.

00:19:32.100 --> 00:19:34.893
It's an all or nothing situation.

00:19:35.790 --> 00:19:37.503
Almost every single day.

00:19:38.820 --> 00:19:41.397
- Just as the stress was starting to go up

00:19:41.397 --> 00:19:43.710
with dealing with different things,

00:19:43.710 --> 00:19:46.713
I had a stress-induced heart
attack at 30 years old.

00:19:49.950 --> 00:19:53.100
- Parent caregivers are more prone

00:19:53.100 --> 00:19:55.800
to different physical illnesses

00:19:55.800 --> 00:19:57.330
because of their mental health.

00:19:57.330 --> 00:19:59.310
We are not targeting this population,

00:19:59.310 --> 00:20:01.710
we're not screening them appropriately.

00:20:01.710 --> 00:20:03.540
Professionals don't look at them

00:20:03.540 --> 00:20:05.460
the same way as the identified patient,

00:20:05.460 --> 00:20:07.740
which is the child who has a disability.

00:20:07.740 --> 00:20:10.640
So, practitioners and professionals

00:20:10.640 --> 00:20:12.600
don't screen them the same way

00:20:12.600 --> 00:20:14.940
as the mother who has a newborn,

00:20:14.940 --> 00:20:16.800
for example, she goes back to her doctor

00:20:16.800 --> 00:20:19.500
and she's screened for
postpartum depression.

00:20:19.500 --> 00:20:23.730
Or maybe the returning
veteran is screened for PTSD,

00:20:23.730 --> 00:20:25.710
because they're more prone to be at risk

00:20:25.710 --> 00:20:26.970
for those diagnosis.

00:20:26.970 --> 00:20:28.740
So, we're looking for that to make sure

00:20:28.740 --> 00:20:30.090
that we're treating them appropriately

00:20:30.090 --> 00:20:31.860
and they're getting the
resources they need.

00:20:31.860 --> 00:20:33.930
We're not doing that with this population,

00:20:33.930 --> 00:20:35.310
and that's really unfortunate.

00:20:35.310 --> 00:20:39.600
They are unseen and they
deserve more attention,

00:20:39.600 --> 00:20:41.040
more mental health resources,

00:20:41.040 --> 00:20:42.510
and more interventions for the family,

00:20:42.510 --> 00:20:45.330
because it's gonna benefit
them and the family unit,

00:20:45.330 --> 00:20:47.553
which in turn helps everybody.

00:20:49.075 --> 00:20:51.825
(metal clanging)

00:20:52.762 --> 00:20:54.780
(ominous music)

00:20:54.780 --> 00:20:59.780
- Society is only as healthy
as the caregivers, honestly.

00:21:00.420 --> 00:21:02.520
Like we're all gonna
be in a caregiving role

00:21:02.520 --> 00:21:04.470
at some point in our lives.

00:21:04.470 --> 00:21:06.210
If you want a healthy society,

00:21:06.210 --> 00:21:08.880
you need to take care
of the caregiver's needs

00:21:08.880 --> 00:21:10.650
in order to have healthy children.

00:21:10.650 --> 00:21:13.050
And that's not just the
children with disabilities,

00:21:13.050 --> 00:21:14.580
it's all the siblings

00:21:14.580 --> 00:21:17.520
that are also involved in these families.

00:21:17.520 --> 00:21:22.320
So, to begin with, the caregiver,
it goes back to my motto,

00:21:22.320 --> 00:21:24.813
the child is only as
healthy as the caregiver.

00:21:26.156 --> 00:21:28.906
(birds chirping)

00:21:33.210 --> 00:21:35.670
- There is no burden of a child.

00:21:35.670 --> 00:21:39.660
It is the burden of our
society failing these families.

00:21:39.660 --> 00:21:42.240
They're not being given enough resources.

00:21:42.240 --> 00:21:46.560
They're not being provided
any continuous care.

00:21:46.560 --> 00:21:48.990
And we're neglecting the family system

00:21:48.990 --> 00:21:51.630
and we're neglecting
these parent caregivers

00:21:51.630 --> 00:21:53.460
and the wellbeing of
these parent caregivers,

00:21:53.460 --> 00:21:56.850
which is a shame because in
the end it affects that child.

00:21:56.850 --> 00:21:59.910
So, if you truly care about
children with disabilities,

00:21:59.910 --> 00:22:02.520
you need to also care about
the parent caregivers.

00:22:02.520 --> 00:22:04.988
- [Jesse] Help him around that table.

00:22:04.988 --> 00:22:07.655
(ominous music)

00:22:09.254 --> 00:22:10.087
- Here.

00:22:12.185 --> 00:22:14.852
(ominous music)

00:22:21.266 --> 00:22:24.766
(ominous music continues)

00:22:27.254 --> 00:22:30.171
(kettle whistling)

00:22:33.974 --> 00:22:36.641
(ominous music)

00:22:38.550 --> 00:22:40.650
- When Lucas started
to go through puberty,

00:22:40.650 --> 00:22:44.730
we lived in rural America, very isolated.

00:22:44.730 --> 00:22:47.640
There were no resources for him

00:22:47.640 --> 00:22:49.860
and no special needs
ministries and churches,

00:22:49.860 --> 00:22:53.591
no accessible playgrounds, just nothing.

00:22:53.591 --> 00:22:57.210
(paper shuffling)

00:22:57.210 --> 00:23:00.120
Not only is there no plan,
but there are no options.

00:23:00.120 --> 00:23:03.360
And all the options have
waiting lists miles long.

00:23:03.360 --> 00:23:06.240
- [Ryan] You know, we ran into
wall after wall after wall.

00:23:06.240 --> 00:23:08.745
These doors just kept
slamming in our faces.

00:23:08.745 --> 00:23:11.412
(ominous music)

00:23:13.200 --> 00:23:16.080
- I called probably 40 different

00:23:16.080 --> 00:23:21.080
daycare camp after school options,

00:23:21.120 --> 00:23:23.370
and not one would take Luke.

00:23:23.370 --> 00:23:25.770
Primarily, because he was in diapers.

00:23:25.770 --> 00:23:27.330
And they said, "We
don't have the training,

00:23:27.330 --> 00:23:29.967
we don't have the staff
who can manage that."

00:23:33.270 --> 00:23:35.820
Even special needs camps would ask,

00:23:35.820 --> 00:23:37.020
they'd have a questionnaire

00:23:37.020 --> 00:23:39.810
and you'd have to check off,
you know, what he's capable of.

00:23:39.810 --> 00:23:43.800
And oh, incontinence, and nope,

00:23:43.800 --> 00:23:46.083
we don't take children who are in diapers.

00:23:47.536 --> 00:23:50.850
(ominous music)

00:23:50.850 --> 00:23:55.410
That's when I realized and
calling every daycare option,

00:23:55.410 --> 00:23:59.670
there wasn't a daycare facility
or even a private person

00:23:59.670 --> 00:24:01.563
who would take him for after school.

00:24:04.320 --> 00:24:06.630
They're not looking for kids like Lucas

00:24:06.630 --> 00:24:09.150
who need complete and total care

00:24:09.150 --> 00:24:10.740
when they're at camp with 'em.

00:24:10.740 --> 00:24:13.080
If you don't even have the
option of special needs camps,

00:24:13.080 --> 00:24:15.360
I don't know where you go as a parent,

00:24:15.360 --> 00:24:18.093
and I've heard this repeatedly
from other caregivers.

00:24:19.380 --> 00:24:22.740
I'm making these calls and
I'm just, my heart is racing.

00:24:22.740 --> 00:24:25.860
I can feel it in my whole body.

00:24:25.860 --> 00:24:28.320
My whole body aches, because I think

00:24:28.320 --> 00:24:31.170
it's in this fight or flight constant,

00:24:31.170 --> 00:24:35.100
because I feel like I'm failing my child.

00:24:35.100 --> 00:24:37.710
And then as the anger piles on,

00:24:37.710 --> 00:24:40.713
there's a feeling of
I'm failing my family.

00:24:44.400 --> 00:24:49.140
I'm feeling completely
dejected and anger is bubbling.

00:24:49.140 --> 00:24:51.660
That's my go-to emotion
is I just get angry.

00:24:51.660 --> 00:24:53.820
I get angry at the system.

00:24:53.820 --> 00:24:56.340
I get angry that there's
nothing for my child.

00:24:56.340 --> 00:24:58.590
It doesn't seem fair,
I don't understand it

00:24:58.590 --> 00:25:00.600
why it's seven of my other kids

00:25:00.600 --> 00:25:01.857
could have a camp to go to,

00:25:01.857 --> 00:25:05.580
but my 16 year old who I need help with

00:25:05.580 --> 00:25:07.530
more than any other child,

00:25:07.530 --> 00:25:11.757
I cannot find anybody or any
facility willing to take him.

00:25:11.757 --> 00:25:14.424
(ominous music)

00:25:17.070 --> 00:25:18.780
- I think our society really struggles

00:25:18.780 --> 00:25:20.520
with taking care of each other.

00:25:20.520 --> 00:25:23.130
I think our society
doesn't give a priority

00:25:23.130 --> 00:25:25.200
to taking care of the vulnerable.

00:25:25.200 --> 00:25:27.270
And that's shown with the lack of funding

00:25:27.270 --> 00:25:30.210
and how our systems are
not easy to navigate.

00:25:30.210 --> 00:25:32.280
And it's not a simple process

00:25:32.280 --> 00:25:34.770
to get the supports that families need.

00:25:34.770 --> 00:25:39.120
What we need is our
system, the larger system,

00:25:39.120 --> 00:25:41.370
to focus and provide respite care

00:25:41.370 --> 00:25:45.870
and supports for the
family, not just the child.

00:25:45.870 --> 00:25:47.430
The actual family is suffering,

00:25:47.430 --> 00:25:49.430
because we are not doing that currently.

00:25:53.220 --> 00:25:55.080
- It makes me feel hopeless sometimes.

00:25:55.080 --> 00:25:59.070
It makes me realize just how
the government does not care

00:25:59.070 --> 00:26:03.360
and how we're pretty much alone.

00:26:03.360 --> 00:26:04.740
We're kind of out here alone

00:26:04.740 --> 00:26:08.880
in the abyss of full-time caregiving.

00:26:08.880 --> 00:26:12.780
- I've seen so much in my nine years

00:26:12.780 --> 00:26:14.493
of caregiving almost 10.

00:26:16.110 --> 00:26:20.763
And it's just, it's not
fair, it's not fair.

00:26:22.680 --> 00:26:26.460
But you gotta live your life
and do the best that you can,

00:26:26.460 --> 00:26:29.220
however you can to make it through,

00:26:29.220 --> 00:26:31.563
'cause if you don't, who's gonna do it?

00:26:34.036 --> 00:26:36.786
(glass clinking)

00:26:38.185 --> 00:26:40.852
(ominous music)

00:26:48.511 --> 00:26:49.663
- [Actor] I don't know what you're doing

00:26:49.663 --> 00:26:51.908
skulking around there (indistinct).

00:26:51.908 --> 00:26:53.959
And I don't want any trouble with you.

00:26:53.959 --> 00:26:55.528
So, hit the road.

00:26:55.528 --> 00:26:57.945
- [Actor] I'm not looking for any trouble.

00:26:57.945 --> 00:27:01.445
- Do you wanna go to the park today, Luke?

00:27:03.224 --> 00:27:04.057
Hey?

00:27:05.470 --> 00:27:07.357
(Luke mumbling)

00:27:07.357 --> 00:27:09.153
You wanna go on a bear hunt?

00:27:10.380 --> 00:27:12.300
- Once he went through puberty,

00:27:12.300 --> 00:27:14.730
that's when the challenges

00:27:14.730 --> 00:27:16.950
felt like they were insurmountable

00:27:16.950 --> 00:27:19.530
where we couldn't overcome.

00:27:19.530 --> 00:27:23.220
It felt like there was
no solution at that time.

00:27:23.220 --> 00:27:25.230
- Nobody wants to help anymore

00:27:25.230 --> 00:27:27.840
with a 16-year-old in diapers.

00:27:27.840 --> 00:27:30.180
- Well, not even a 13-year-old.

00:27:30.180 --> 00:27:31.080
- No.
- At that point

00:27:31.080 --> 00:27:34.200
when he first went through
puberty, it was uncomfortable.

00:27:34.200 --> 00:27:35.850
And I think he was even uncomfortable

00:27:35.850 --> 00:27:38.310
for us to ask somebody.

00:27:38.310 --> 00:27:39.143
- [Jesse] Oh, yeah.
- [Ryan] Like we didn't

00:27:39.143 --> 00:27:39.976
even wanna ask for help,

00:27:39.976 --> 00:27:42.540
because it was such a unique circumstance.

00:27:42.540 --> 00:27:45.660
There was just nobody that
we felt comfortable with,

00:27:45.660 --> 00:27:46.710
you know, even asking.

00:27:46.710 --> 00:27:48.870
- Right. Well, we had some
really bad experiences

00:27:48.870 --> 00:27:50.370
with help too,-
- Mm.

00:27:50.370 --> 00:27:51.930
- which made us a little bit skittish.

00:27:51.930 --> 00:27:53.610
And I've heard that resounding story

00:27:53.610 --> 00:27:55.500
with a lot of special needs families too,

00:27:55.500 --> 00:27:58.200
that the help that you do get,

00:27:58.200 --> 00:28:02.550
I mean, they're so underpaid
and so underqualified

00:28:02.550 --> 00:28:05.280
and don't have the education necessary

00:28:05.280 --> 00:28:07.080
to care for a child like this.

00:28:07.080 --> 00:28:09.870
That they almost make the situation worse.

00:28:09.870 --> 00:28:11.280
- Yeah,
- A lot of times.

00:28:11.280 --> 00:28:12.600
- And there were some good ones,

00:28:12.600 --> 00:28:15.540
but what we noticed is
when they were good at it,

00:28:15.540 --> 00:28:18.030
they moved on very quickly
into another field.

00:28:18.030 --> 00:28:21.510
- Right, and finally we
were done after two years,

00:28:21.510 --> 00:28:24.000
because the stress of that many people

00:28:24.000 --> 00:28:25.230
in and out of your house

00:28:25.230 --> 00:28:29.640
and some of them did some
pretty horrible things.

00:28:29.640 --> 00:28:34.640
So, we just decided not
to pursue that anymore.

00:28:35.870 --> 00:28:37.970
(ominous music)

00:28:37.970 --> 00:28:40.637
(water running)

00:28:42.330 --> 00:28:45.360
- Many direct caregivers are
actually caregivers themselves

00:28:45.360 --> 00:28:47.700
and lack the supportive workplace policies

00:28:47.700 --> 00:28:48.840
in their industries.

00:28:48.840 --> 00:28:51.360
And when we talk about the availability

00:28:51.360 --> 00:28:52.350
of direct care workers,

00:28:52.350 --> 00:28:54.630
that often leads to questions about

00:28:54.630 --> 00:28:56.820
what supports are in place for them

00:28:56.820 --> 00:28:59.790
when it comes to wages, the industry,

00:28:59.790 --> 00:29:02.340
staffing and hour scheduling.

00:29:02.340 --> 00:29:05.310
So, I think there's a lot to be said about

00:29:05.310 --> 00:29:08.400
how can we include supports
for direct care services

00:29:08.400 --> 00:29:11.190
as well as how do we observe their role

00:29:11.190 --> 00:29:12.540
in this caregiving crisis.

00:29:12.540 --> 00:29:13.797
- W, is about eat.

00:29:19.140 --> 00:29:21.930
- If they are actually paid better,

00:29:21.930 --> 00:29:24.660
then we'll have more quality service

00:29:24.660 --> 00:29:27.330
and more providers in that helping field.

00:29:27.330 --> 00:29:29.010
The same way that teachers are underpaid

00:29:29.010 --> 00:29:31.650
and special education's understaffed,

00:29:31.650 --> 00:29:32.730
there's a reason for that.

00:29:32.730 --> 00:29:34.320
It's a tough job sometimes

00:29:34.320 --> 00:29:37.950
and we need to be able to
fund that more appropriately

00:29:37.950 --> 00:29:39.330
so there's less burnout.

00:29:39.330 --> 00:29:41.460
- When we value the
work of providing care,

00:29:41.460 --> 00:29:43.380
which has long been marginalized

00:29:43.380 --> 00:29:45.930
by sexism and racism in this country,

00:29:45.930 --> 00:29:48.933
we as a nation become
stronger and healthier for it.

00:29:50.817 --> 00:29:53.400
(somber music)

00:30:03.516 --> 00:30:05.130
- We've always had to
have a lot of flexibility

00:30:05.130 --> 00:30:06.510
when it comes to making money.

00:30:06.510 --> 00:30:09.720
That's just something Ryan
and I have always known.

00:30:09.720 --> 00:30:12.390
Like we need to piece together this living

00:30:12.390 --> 00:30:15.570
and we have to somehow be
self-employed with our life,

00:30:15.570 --> 00:30:17.340
because there are so many variables

00:30:17.340 --> 00:30:20.670
and unexpected occurrences
that happen all the time.

00:30:20.670 --> 00:30:23.520
You know, for instance,
like Luke ended up in ICU

00:30:23.520 --> 00:30:25.470
for about six weeks last year

00:30:25.470 --> 00:30:28.150
and we had to kind of drop everything.

00:30:28.150 --> 00:30:30.733
(somber music)

00:30:36.598 --> 00:30:38.970
- I couldn't work a 40-hour week job

00:30:38.970 --> 00:30:40.980
and be away from the house all the time,

00:30:40.980 --> 00:30:42.690
because kids were getting off the bus.

00:30:42.690 --> 00:30:44.130
And we have a big family,

00:30:44.130 --> 00:30:46.140
you have to make some of
those sacrifices anyway.

00:30:46.140 --> 00:30:50.400
But with Luke, it just changes everything.

00:30:50.400 --> 00:30:53.820
If he's sick or he has an an
appointment at the neurologist

00:30:53.820 --> 00:30:57.000
or I can't call in sick,
I can't call into the boss

00:30:57.000 --> 00:30:58.770
and say, "Hey, I didn't know this,

00:30:58.770 --> 00:31:00.840
but I'm gonna be in ICU
for the next six weeks."

00:31:00.840 --> 00:31:02.730
You know, it's just not an option.

00:31:02.730 --> 00:31:05.190
So, to be able to work for myself

00:31:05.190 --> 00:31:06.810
was something I always wanted to do.

00:31:06.810 --> 00:31:08.580
And this made it an absolute,

00:31:08.580 --> 00:31:10.530
like it wasn't really a choice.

00:31:10.530 --> 00:31:12.090
There aren't that many forgiving bosses

00:31:12.090 --> 00:31:13.980
that can say you can take six weeks off

00:31:13.980 --> 00:31:15.960
and then come back when you feel like it

00:31:15.960 --> 00:31:18.540
or when you're available again,

00:31:18.540 --> 00:31:20.970
that just, it's not gonna happen.

00:31:20.970 --> 00:31:23.430
- So many workplaces and policymakers

00:31:23.430 --> 00:31:25.350
are not sure about the burden

00:31:25.350 --> 00:31:27.180
that many caregivers have,

00:31:27.180 --> 00:31:30.510
and that's because they're
often ignored in conversations.

00:31:30.510 --> 00:31:32.580
Policies are made without them.

00:31:32.580 --> 00:31:36.390
And also, caregivers are
also suffering in silence.

00:31:36.390 --> 00:31:39.120
So, a lot of this work goes
behind the scenes at home.

00:31:39.120 --> 00:31:40.530
And so, they're often is left out

00:31:40.530 --> 00:31:42.660
of conversations in the workplace.

00:31:42.660 --> 00:31:44.010
And I think it's important for us

00:31:44.010 --> 00:31:46.380
to bridge that gap in policy

00:31:46.380 --> 00:31:48.150
and ensure that we're talking about

00:31:48.150 --> 00:31:50.430
what caregivers are struggling through

00:31:50.430 --> 00:31:51.720
when we're making policies

00:31:51.720 --> 00:31:53.460
like paid family and medical leave

00:31:53.460 --> 00:31:55.200
or caregiver discrimination.

00:31:55.200 --> 00:31:57.960
So that way the policies
are not just made,

00:31:57.960 --> 00:31:59.760
but they're also effective in ensuring

00:31:59.760 --> 00:32:02.340
that workers, you know, not just women,

00:32:02.340 --> 00:32:05.700
but men as well can take
the time off they need

00:32:05.700 --> 00:32:08.493
when their family members
are going through a crisis.

00:32:10.200 --> 00:32:14.370
- Just between managing their
appointments and meetings

00:32:14.370 --> 00:32:17.760
and checkups and therapies,

00:32:17.760 --> 00:32:20.460
there's just no way that I
could work outside the home

00:32:21.780 --> 00:32:23.220
without losing my job.

00:32:23.220 --> 00:32:26.580
And I think this is the
reality for a lot of families

00:32:26.580 --> 00:32:29.610
that have children with additional needs.

00:32:29.610 --> 00:32:32.640
One parent usually has
to give up their career

00:32:32.640 --> 00:32:35.850
to manage everything that comes with that.

00:32:35.850 --> 00:32:38.490
- I was told that I could have a career

00:32:38.490 --> 00:32:41.160
or I could adopt my daughter.

00:32:41.160 --> 00:32:43.950
So, we adopted our daughter.

00:32:43.950 --> 00:32:46.293
Once again, never looked back on it.

00:32:47.700 --> 00:32:51.460
I've become a full-time,
stay-at-home parent

00:32:52.410 --> 00:32:54.450
and that has entailed everything

00:32:54.450 --> 00:32:59.280
from chasing insurance
companies on the phone,

00:32:59.280 --> 00:33:02.400
spending hours in therapy,
driving to and from.

00:33:02.400 --> 00:33:04.500
And for the last six months,

00:33:04.500 --> 00:33:07.530
pretty much sitting in a hospital room

00:33:07.530 --> 00:33:09.630
at our local children's hospital.

00:33:09.630 --> 00:33:13.260
- I left my corporate job,
my background is in IT,

00:33:13.260 --> 00:33:15.600
but I had to leave my job just because

00:33:15.600 --> 00:33:17.790
the demand for Janelle's needs

00:33:17.790 --> 00:33:20.100
were getting a little bit extreme.

00:33:20.100 --> 00:33:22.440
And I had to choose
what was more important,

00:33:22.440 --> 00:33:25.170
me working or her development,

00:33:25.170 --> 00:33:26.643
and I chose her development.

00:33:28.469 --> 00:33:31.052
(somber music)

00:33:32.130 --> 00:33:34.080
- When we talk about who is handling

00:33:34.080 --> 00:33:35.730
the care for their families

00:33:35.730 --> 00:33:38.730
or for sick loved ones,
elder care and childcare,

00:33:38.730 --> 00:33:41.460
that does majorly fall on women.

00:33:41.460 --> 00:33:44.820
So, women are disproportionately
leaving the workforce

00:33:44.820 --> 00:33:47.730
and being negatively affected
by this crisis of care.

00:33:47.730 --> 00:33:49.920
You're really have no choice at all,

00:33:49.920 --> 00:33:52.530
you know, when you're having
to choose between your paycheck

00:33:52.530 --> 00:33:55.110
or spending time and
caring for your loved one.

00:33:55.110 --> 00:33:58.020
And that really does leave a
lot of families on the line

00:33:58.020 --> 00:33:59.883
in terms of economic securities.

00:34:01.680 --> 00:34:03.690
Now, if they are caring for a loved one

00:34:03.690 --> 00:34:06.960
that has a disability, the
Americans with Disabilities Act

00:34:06.960 --> 00:34:10.440
does cover them in terms
of facing discrimination,

00:34:10.440 --> 00:34:12.210
but there's not an explicit right

00:34:12.210 --> 00:34:14.670
to receiving reasonable accommodations

00:34:14.670 --> 00:34:17.280
to care for your loved
one that has a disability.

00:34:17.280 --> 00:34:19.350
And this could include time off,

00:34:19.350 --> 00:34:21.690
this could include flexible scheduling,

00:34:21.690 --> 00:34:24.843
or even a minor accommodation
like working from home.

00:34:25.710 --> 00:34:27.480
Many caregivers love their job.

00:34:27.480 --> 00:34:30.420
They just wanna be able
to ask for accommodations

00:34:30.420 --> 00:34:32.310
and receive the time off they need

00:34:32.310 --> 00:34:34.760
so that they can care for
their families as well.

00:34:35.805 --> 00:34:38.722
(packet crinkling)

00:34:43.800 --> 00:34:47.163
- Walk, I know, I know, I know, I know,

00:34:47.163 --> 00:34:49.290
I know you don't want to, it's all right.

00:34:49.290 --> 00:34:51.513
We're gonna go for a walk, okay?

00:34:53.170 --> 00:34:54.562
Now, we're gonna go for a walk.

00:34:54.562 --> 00:34:55.395
- Wow.

00:34:55.395 --> 00:34:56.228
- We gotta put these on.

00:34:59.100 --> 00:35:00.573
Go to the park and go slow.

00:35:01.736 --> 00:35:04.319
(Luke singing)

00:35:05.340 --> 00:35:07.743
- Remember your manners, more please.

00:35:10.770 --> 00:35:12.210
- When we go out with Luke,-

00:35:12.210 --> 00:35:13.043
- A guy.

00:35:13.043 --> 00:35:15.390
- He's typically-
- A guy.

00:35:15.390 --> 00:35:17.220
- pretty excited to be out and about

00:35:17.220 --> 00:35:20.488
and we still get a lot of
those sympathetic like,

00:35:20.488 --> 00:35:23.280
"Aw, like that's so sweet."

00:35:23.280 --> 00:35:25.080
You're taking your son for a walk.

00:35:25.080 --> 00:35:28.530
I think it's more of a
sympathetic like, "Aw."

00:35:28.530 --> 00:35:32.070
Rather than the judgment, typically.

00:35:32.070 --> 00:35:35.250
However, if Luke is not
in a good mood that day

00:35:35.250 --> 00:35:38.640
and he starts screaming and
hair pulling and scratching,

00:35:38.640 --> 00:35:40.470
trying to get his way,

00:35:40.470 --> 00:35:43.770
I immediately am scoping like,

00:35:43.770 --> 00:35:46.260
who's watching this and
how is it being perceived?

00:35:46.260 --> 00:35:48.273
And my heart starts racing like,

00:35:49.694 --> 00:35:52.680
are we gonna have cop cars
here in a few minutes?

00:35:52.680 --> 00:35:54.933
Because they're not understanding that,

00:35:55.770 --> 00:35:58.320
A, this child has profound special needs

00:35:58.320 --> 00:36:00.330
and are they gonna blame him?

00:36:00.330 --> 00:36:01.953
Are they gonna blame me?

00:36:03.300 --> 00:36:06.540
My mind goes in a million
different directions

00:36:06.540 --> 00:36:09.480
and I'm very, very conscious
of every single person

00:36:09.480 --> 00:36:13.646
within our circle at that moment in time.

00:36:13.646 --> 00:36:16.229
(somber music)

00:36:20.400 --> 00:36:23.670
So, I think we often find
that we just stay home,

00:36:23.670 --> 00:36:25.620
which can make the special needs journey

00:36:25.620 --> 00:36:28.410
very isolating and exhausting,

00:36:28.410 --> 00:36:32.280
because your house begins to
feel like a tomb a little bit,

00:36:32.280 --> 00:36:34.860
because you're just holed up at home

00:36:34.860 --> 00:36:36.570
trying to manage these needs

00:36:36.570 --> 00:36:39.993
and trying not to appear scary
to the rest of the world.

00:36:41.041 --> 00:36:43.874
(people chatting)

00:36:45.505 --> 00:36:46.338
Super fun.

00:36:47.403 --> 00:36:49.350
- I think what's eyeopening
for a lot of people

00:36:49.350 --> 00:36:51.180
is when we had to isolate

00:36:51.180 --> 00:36:53.520
and quarantine during the pandemic.

00:36:53.520 --> 00:36:54.990
So many people struggled

00:36:54.990 --> 00:36:57.480
and we saw an increase of depression,

00:36:57.480 --> 00:36:59.520
because of the isolation.

00:36:59.520 --> 00:37:03.420
That's how a lot of our parent
caregivers live for years.

00:37:03.420 --> 00:37:05.580
We had to quarantine briefly,

00:37:05.580 --> 00:37:06.870
this is how a lot of parents

00:37:06.870 --> 00:37:08.730
are living in their day-to-Day lives.

00:37:08.730 --> 00:37:12.570
Is staying home as they're
24/7 caretaker for their child

00:37:12.570 --> 00:37:13.680
and they stay home,

00:37:13.680 --> 00:37:15.330
because it's difficult
to go in the community,

00:37:15.330 --> 00:37:17.310
because our community
is making it really hard

00:37:17.310 --> 00:37:18.603
to do things out there.

00:37:19.481 --> 00:37:22.148
(ominous music)

00:37:24.090 --> 00:37:25.800
- You get to the point
where these behaviors

00:37:25.800 --> 00:37:28.400
become so common you don't
leave your house anymore.

00:37:29.848 --> 00:37:32.520
And when it starts controlling
every aspect of your life,

00:37:32.520 --> 00:37:35.280
it starts controlling every aspect of you.

00:37:35.280 --> 00:37:37.890
It starts controlling every
aspect of your children's life,

00:37:37.890 --> 00:37:41.160
your extended family, everybody
around you, it controls,

00:37:41.160 --> 00:37:43.470
- Even a grocery run it's hard.

00:37:48.120 --> 00:37:51.430
And then you have people staring at you

00:37:52.320 --> 00:37:54.810
like, you know, get ahold of your kids

00:37:54.810 --> 00:37:58.023
or you know, giving you that
like and shaking their head.

00:37:59.340 --> 00:38:01.323
- Sometimes I feel people stare.

00:38:03.330 --> 00:38:06.577
Your child's too big to
be in a stroller or like,

00:38:06.577 --> 00:38:09.030
"Why are you still feeding him?

00:38:09.030 --> 00:38:11.280
He should be able to feed himself."

00:38:11.280 --> 00:38:15.780
So, like on the outside,
our boys look very typical

00:38:15.780 --> 00:38:18.450
and their disabilities are invisible.

00:38:18.450 --> 00:38:21.450
So, I feel like there's
sometimes misunderstanding

00:38:21.450 --> 00:38:24.600
or judgment that comes from people

00:38:24.600 --> 00:38:26.520
that are just observing us as a family.

00:38:26.520 --> 00:38:28.410
- You know, I don't need anyone

00:38:28.410 --> 00:38:32.280
telling me or passing judgment,

00:38:32.280 --> 00:38:37.280
because I am my worst critic.

00:38:41.044 --> 00:38:43.961
(speaker sniffing)

00:38:45.033 --> 00:38:49.441
I am hard on myself already.

00:38:49.441 --> 00:38:52.024
(somber music)

00:39:00.262 --> 00:39:03.504
And I am doing the best that I can.

00:39:03.504 --> 00:39:06.087
(somber music)

00:39:10.763 --> 00:39:11.627
(children screaming)

00:39:11.627 --> 00:39:13.530
- Should we run?

00:39:13.530 --> 00:39:14.790
Come on!

00:39:14.790 --> 00:39:15.623
- No.

00:39:19.094 --> 00:39:19.927
- You have to go to the other side.

00:39:23.884 --> 00:39:28.884
I know what you want, but we
gotta go to the other side.

00:39:29.100 --> 00:39:30.720
People can think what they wanna think

00:39:30.720 --> 00:39:35.340
and turn their faces away from
us or like avert their eyes,

00:39:35.340 --> 00:39:38.100
because it's kind of a strange situation

00:39:38.100 --> 00:39:40.590
and they don't know how to respond.

00:39:40.590 --> 00:39:43.500
So, I don't know that Luke
needs acknowledgement,

00:39:43.500 --> 00:39:44.580
but I think it would be nice,

00:39:44.580 --> 00:39:46.800
if we would get that acknowledgement

00:39:46.800 --> 00:39:48.120
or you have a beautiful family,

00:39:48.120 --> 00:39:49.770
or you know, something like that.

00:39:53.473 --> 00:39:56.413
- You need to buckle, you
need to put your seatbelt on.

00:39:57.330 --> 00:39:58.833
- I don't feel invisible.

00:40:00.420 --> 00:40:02.850
It's hard to be invisible
with a child like Luke

00:40:02.850 --> 00:40:06.093
and seven other kids,
but I do feel unseen,

00:40:07.500 --> 00:40:10.350
because they have to
make a concerted effort

00:40:10.350 --> 00:40:14.190
to like avert their eyes
or turn their face away

00:40:14.190 --> 00:40:17.670
and make that effort
to not acknowledge us.

00:40:17.670 --> 00:40:20.493
So, that's very different
than feeling invisible.

00:40:23.335 --> 00:40:26.700
(people chatting)

00:40:26.700 --> 00:40:28.053
Ignorance is bliss.

00:40:29.130 --> 00:40:31.503
She's fine, he's fine, they're fine.

00:40:32.430 --> 00:40:34.590
And we plaster our smiles on our faces

00:40:34.590 --> 00:40:36.900
and pretend like everything's fine.

00:40:36.900 --> 00:40:39.090
And we just can't do that anymore,

00:40:39.090 --> 00:40:41.760
because most caregivers are not fine

00:40:41.760 --> 00:40:43.110
and they're not doing well.

00:40:45.453 --> 00:40:48.982
(glass clinking)

00:40:48.982 --> 00:40:52.230
(somber music)

00:40:52.230 --> 00:40:53.400
- It's stressful.

00:40:53.400 --> 00:40:55.080
It's really, really, really stressful,

00:40:55.080 --> 00:40:58.293
because she is my child and
I do worry about her so much.

00:41:00.690 --> 00:41:05.070
And the older we get, the
more concerned I am that

00:41:05.070 --> 00:41:08.120
how long are my husband and
I gonna be able to do this?

00:41:08.120 --> 00:41:12.000
- It is taxing on your body
and it is taxing on your mind,

00:41:12.000 --> 00:41:15.690
because you don't just
live in that moment.

00:41:15.690 --> 00:41:19.440
My mind thinks about, oh my
gosh, what if I'm not even here?

00:41:19.440 --> 00:41:21.660
Who's gonna take care of my child?

00:41:21.660 --> 00:41:24.210
- Nothing can happen to me or my husband.

00:41:24.210 --> 00:41:26.943
We can't get sick, we can't die.

00:41:28.320 --> 00:41:30.850
Our son needs us 24 hours a day

00:41:32.550 --> 00:41:34.590
and that's a heavy burden.

00:41:34.590 --> 00:41:35.820
It's a lot.

00:41:35.820 --> 00:41:37.800
- Our parenting and caregiving

00:41:37.800 --> 00:41:40.893
for Jacob will continue indefinitely,

00:41:46.680 --> 00:41:49.703
and that's just
overwhelming to think about.

00:41:51.712 --> 00:41:54.295
(somber music)

00:41:56.210 --> 00:41:59.280
Not because we don't
wanna do that for him,

00:41:59.280 --> 00:42:01.680
but because there's so many things

00:42:01.680 --> 00:42:02.913
you have to plan for.

00:42:04.200 --> 00:42:06.723
Financially, you try to
envision your future,

00:42:12.750 --> 00:42:15.500
and it looks so different
than what I thought it would.

00:42:17.753 --> 00:42:20.336
(somber music)

00:42:27.533 --> 00:42:30.950
(somber music continues)

00:42:38.312 --> 00:42:41.729
(somber music continues)

00:42:45.000 --> 00:42:48.210
- We need more agencies and
I think we need more funding

00:42:48.210 --> 00:42:51.540
to support the family
systems as they plan for

00:42:51.540 --> 00:42:54.090
what happens when these
parent caregivers pass away,

00:42:54.090 --> 00:42:56.340
because this is such an issue.

00:42:56.340 --> 00:42:58.930
And so many parents are so worried about

00:42:59.820 --> 00:43:02.010
what's gonna happen to their
child who has a disability

00:43:02.010 --> 00:43:04.110
and needs all these extra supports.

00:43:04.110 --> 00:43:07.650
And we wanna provide the appropriate care,

00:43:07.650 --> 00:43:08.970
but who's gonna do that

00:43:08.970 --> 00:43:11.730
and how is this gonna impact
my other child's life,

00:43:11.730 --> 00:43:13.293
if they become the caretaker?

00:43:16.830 --> 00:43:17.663
- Barney?

00:43:18.623 --> 00:43:21.290
(Luke mumbling)

00:43:22.320 --> 00:43:24.270
- This keeps me up at night,

00:43:24.270 --> 00:43:27.420
just wondering, I think how much longer

00:43:27.420 --> 00:43:30.900
I can physically do this as he gets older

00:43:30.900 --> 00:43:34.320
and feeling like my body hurts

00:43:34.320 --> 00:43:36.870
so much already at 44 years old.

00:43:36.870 --> 00:43:39.580
I don't know what that
looks like at 54 years old

00:43:40.800 --> 00:43:44.493
and how that impacts my
ability to care for him.

00:43:45.751 --> 00:43:48.334
(somber music)

00:43:52.729 --> 00:43:54.720
- I don't make five-year plans anymore.

00:43:54.720 --> 00:43:59.720
I live by today and tomorrow
and hope that tomorrow comes

00:43:59.880 --> 00:44:03.900
and then a year from now, who knows?

00:44:03.900 --> 00:44:06.630
I mean, no, you can't think too far ahead.

00:44:06.630 --> 00:44:09.544
I mean it's just, it doesn't work anymore.

00:44:09.544 --> 00:44:12.127
(somber music)

00:44:19.830 --> 00:44:22.590
- We don't have any other option

00:44:22.590 --> 00:44:24.930
other than to just keep going.

00:44:24.930 --> 00:44:29.370
And she has experienced
so many challenges already

00:44:29.370 --> 00:44:33.900
in her relatively short
amount of time on this planet.

00:44:33.900 --> 00:44:38.900
And to me, my job as a
parent is to give my child

00:44:39.600 --> 00:44:42.633
the best quality of life I absolutely can.

00:44:43.560 --> 00:44:46.380
And unfortunately, that often means

00:44:46.380 --> 00:44:51.380
at the expense of my own quality of life,

00:44:52.350 --> 00:44:54.450
but I don't see any other way around it.

00:44:54.450 --> 00:44:57.960
I want my daughter to have experiences.

00:44:57.960 --> 00:45:01.833
I want her to be in good health
and see the best doctors.

00:45:02.880 --> 00:45:07.650
And that means keeping going
even when you're exhausted,

00:45:07.650 --> 00:45:11.160
even when you're struggling
with your mental health,

00:45:11.160 --> 00:45:14.520
even when there's not
support, you just keep going,

00:45:14.520 --> 00:45:17.007
because you have to for your child.

00:45:17.007 --> 00:45:21.000
- And I as her mom want the best for her

00:45:21.000 --> 00:45:26.000
and I want her to have a
good experience every day.

00:45:28.080 --> 00:45:30.390
And if I'm not feeling that good either,

00:45:30.390 --> 00:45:33.840
because of the exhaustion of caregiving,

00:45:33.840 --> 00:45:38.490
then of course, that affects
the quality of her support.

00:45:38.490 --> 00:45:39.880
- I think about my son

00:45:41.190 --> 00:45:45.010
and if this child that struggles so much

00:45:46.440 --> 00:45:49.320
to do things that come
so simply for other kids,

00:45:49.320 --> 00:45:51.810
I mean he's got academic struggles

00:45:51.810 --> 00:45:54.213
and social struggles
and medical struggles.

00:45:55.800 --> 00:45:59.133
If this kid can wake up every day,

00:46:00.090 --> 00:46:01.790
put one foot in front of the other

00:46:02.940 --> 00:46:07.320
and take on the day with
such strength and bravery

00:46:07.320 --> 00:46:12.320
and with many times a
smile, then so can I.

00:46:12.540 --> 00:46:16.833
So, he is what keeps me going.

00:46:17.970 --> 00:46:21.660
When things get tough, I think about him

00:46:21.660 --> 00:46:25.740
and he inspires us and he's amazing.

00:46:25.740 --> 00:46:28.500
So, if he can do it, if he can go through

00:46:28.500 --> 00:46:33.153
what he goes through the hard,
hard days, then so can I.

00:46:34.110 --> 00:46:37.150
- What motivates me to keep going is

00:46:38.010 --> 00:46:40.230
that I want the best for her

00:46:40.230 --> 00:46:43.110
and I want to be able to do it all.

00:46:43.110 --> 00:46:48.110
And I want to change the
way the system is designed.

00:46:49.500 --> 00:46:54.500
It's heartbreaking to me to think

00:46:54.810 --> 00:46:58.200
that this is the best we can do.

00:46:58.200 --> 00:47:00.093
I just know we can do better.

00:47:03.420 --> 00:47:04.713
- At the end of all this,

00:47:06.180 --> 00:47:11.180
I wouldn't trade them for
anything in the world.

00:47:11.535 --> 00:47:14.535
(speaker sniffling)

00:47:19.860 --> 00:47:22.500
Even here at like two
o'clock in the morning,

00:47:22.500 --> 00:47:25.290
because this is the only
time I get to myself,

00:47:25.290 --> 00:47:26.123
like right now.

00:47:30.448 --> 00:47:31.350
(speaker sniffling)

00:47:31.350 --> 00:47:32.670
I can still smile,

00:47:32.670 --> 00:47:37.670
because there are happy times,
there are happy moments.

00:47:41.310 --> 00:47:45.813
They laugh, we all laugh,

00:47:48.330 --> 00:47:51.540
and those are the times I hold on to,

00:47:51.540 --> 00:47:56.540
and those are the times
that are worth fighting for.

00:48:00.120 --> 00:48:02.847
Those are the times that keep me going.

00:48:04.192 --> 00:48:06.775
(somber music)

00:48:15.004 --> 00:48:18.182
(water running)

00:48:18.182 --> 00:48:21.747
(kids screaming)

00:48:21.747 --> 00:48:24.330
(somber music)

00:48:25.971 --> 00:48:28.721
(waves crashing)

00:48:29.715 --> 00:48:32.465
(kids screaming)

00:48:36.870 --> 00:48:39.870
- In order for our society
to grow and come together

00:48:39.870 --> 00:48:42.660
and support these children
with disabilities,

00:48:42.660 --> 00:48:45.570
we have to pay attention
to the family system.

00:48:45.570 --> 00:48:48.360
And those parent caregivers
are the first step

00:48:48.360 --> 00:48:49.743
in the family system.

00:48:51.056 --> 00:48:53.639
(somber music)

00:48:56.670 --> 00:48:58.380
- At some point in our lives,

00:48:58.380 --> 00:48:59.940
whether we are younger or older,

00:48:59.940 --> 00:49:02.430
we are going to either become a caregiver

00:49:02.430 --> 00:49:06.360
for our family members or
need care for ourselves.

00:49:06.360 --> 00:49:08.730
It really is important
for folks to get involved

00:49:08.730 --> 00:49:12.453
in what policies around caregiving
look like no matter what.

00:49:17.970 --> 00:49:22.320
- I think it begins with seeing
us stop turning your head,

00:49:22.320 --> 00:49:24.540
because we all know that family

00:49:24.540 --> 00:49:27.180
and you need to first accept the fact

00:49:27.180 --> 00:49:31.053
that their life is probably
very difficult and challenging.

00:49:34.950 --> 00:49:39.240
People don't understand
when you're in a situation

00:49:39.240 --> 00:49:41.820
where you have a child with special needs,

00:49:41.820 --> 00:49:45.480
your to-do list is
probably five times longer

00:49:45.480 --> 00:49:48.330
than another family's to-do list,

00:49:48.330 --> 00:49:51.900
because the needs of
your child are so intense

00:49:51.900 --> 00:49:55.260
and so all consuming and never end

00:49:55.260 --> 00:49:57.390
plus the needs of running a household

00:49:57.390 --> 00:49:59.700
plus the needs of your other children.

00:49:59.700 --> 00:50:02.760
So, even to alleviate a
couple of those little things

00:50:02.760 --> 00:50:05.460
off that to-do list, whatever they may be,

00:50:05.460 --> 00:50:07.440
are so appreciated.

00:50:07.440 --> 00:50:10.710
And it fuels us as caregivers just to know

00:50:10.710 --> 00:50:14.913
that like people are seeing
us, they're seeing us.

00:50:15.957 --> 00:50:18.540
(somber music)

00:50:24.240 --> 00:50:26.733
- Just talk to the family,

00:50:28.710 --> 00:50:33.710
talk to mom and dad and
say, "What can I do?

00:50:34.290 --> 00:50:36.540
What do you need help with?

00:50:36.540 --> 00:50:39.423
What have you been wanting to get done?

00:50:40.500 --> 00:50:41.727
And let me help you."

00:50:44.096 --> 00:50:48.773
And that would be the
biggest blessing to a family.

00:50:50.100 --> 00:50:53.610
- I think as a caregiver there
are so many specific tasks

00:50:53.610 --> 00:50:56.700
that we can only do on our own.

00:50:56.700 --> 00:51:01.200
And so, anyone who can take off a task

00:51:01.200 --> 00:51:06.200
that they can do from our
load, our mental load,

00:51:06.330 --> 00:51:08.793
is extremely helpful.

00:51:09.630 --> 00:51:13.653
- Don't ask me to pray, don't
ask to pray for me, you know?

00:51:16.470 --> 00:51:19.260
It's like, you know, did I forget to pray?

00:51:19.260 --> 00:51:20.580
No, I pray all the time.

00:51:20.580 --> 00:51:24.090
Just ask if I need some help, you know?

00:51:24.090 --> 00:51:27.183
Just stand with me for a
minute and listen to me.

00:51:28.440 --> 00:51:29.340
Just listen to me.

00:51:30.210 --> 00:51:31.350
That's really all I need.

00:51:31.350 --> 00:51:36.180
- People who are a caregiver,
sometimes they get consumed

00:51:36.180 --> 00:51:38.340
with all that's going on within their day,

00:51:38.340 --> 00:51:41.010
like trying to manage work,
trying to manage a household,

00:51:41.010 --> 00:51:44.253
trying to manage kids, check on them.

00:51:45.420 --> 00:51:48.270
We may seem strong and like
we can handle everything

00:51:48.270 --> 00:51:49.590
no matter what comes our way,

00:51:49.590 --> 00:51:52.350
but sometimes we need
to be checked on too,

00:51:52.350 --> 00:51:54.660
'cause we're always
checking on somebody else.

00:51:54.660 --> 00:51:55.860
- They always say the road to hell

00:51:55.860 --> 00:51:58.230
is paved with good intention.

00:51:58.230 --> 00:51:59.670
And I think it really is.

00:51:59.670 --> 00:52:01.207
People step forward and say,

00:52:01.207 --> 00:52:03.360
"Oh, we wanna do something."

00:52:03.360 --> 00:52:06.180
You know, "We'll do this for
your family or we'll do that."

00:52:06.180 --> 00:52:08.310
And they never follow through.

00:52:08.310 --> 00:52:10.500
We get a lot of lip service.

00:52:10.500 --> 00:52:13.680
We get told how much they love our kids,

00:52:13.680 --> 00:52:15.720
how brave we are,

00:52:15.720 --> 00:52:18.900
and what wonderful saintly parents we are,

00:52:18.900 --> 00:52:20.640
but it's lonely being a saint.

00:52:20.640 --> 00:52:21.930
It's really hard.

00:52:21.930 --> 00:52:26.100
I'm not a saint, I'm a human
being and I still have needs.

00:52:26.100 --> 00:52:29.310
- Respite, we desperately need respite.

00:52:29.310 --> 00:52:34.310
Whenever we have just even
a short time away together

00:52:36.180 --> 00:52:41.180
to clear our mind, it
can change everything.

00:52:42.480 --> 00:52:46.350
- People ask, "Do you need any help."

00:52:46.350 --> 00:52:51.350
Organizations, open your
mind, expand your horizons.

00:52:51.510 --> 00:52:55.320
Nobody says you have to know
everything about the condition,

00:52:55.320 --> 00:52:59.253
but at least be receptive
to people who need the help.

00:53:01.020 --> 00:53:01.853
My hand is up.

00:53:04.185 --> 00:53:06.768
(somber music)

00:53:14.002 --> 00:53:17.419
(somber music continues)