ANNOUNCER 1: Funding for this program was made possible by the Greater Washington Educational Telecommunications Association and the following local sponsors.

WOMAN: Central Bank of the Ozarks offering investments, loans, business, and online banking services at 21 locations throughout the Ozarks.

Information at centralbank.net.

Mid-Missouri Bank, celebrating 152 years of service and offering Kasasa products and personalized banking at 13 locations.

Information on locations and hours at midmobank.com.

Community Partner Classic Wood Floors featuring custom-finished solid wood floors for new construction or remodeling projects.

On the web at classicwoodfloors.com.

MAN: Wild Birds Unlimited in Springfield featuring wild bird foods, products, and advice for the backyard hobbyist.

Wild Birds Unlimited of Springfield, bringing people and nature together.

ANNOUNCER 2: The following program is a production of Ozarks Public Television.

So many people have been family caregivers and not even known it, necessarily.

I mean, I was always kind of a caregiver for her.

So that's why it's hard to find a drop-off point where I was like, yes, I'm the caregiver now.

I never thought I would be a caregiver, ever, because Steve was so healthy.

But I've learned that at some point in your life, you're going to be a caregiver.

So it's probably something you should start thinking about right now.

You got to try and enjoy every day.

And I'm lucky.

I'm very lucky.

The impact has been deep and powerful.

At times, has made me resentful and bitter.

And at times, it just fills me with gratitude for the gift to get to care for someone that way.

It's a mission to be a caregiver.

It's not a money-making scheme.

Caregiving certainly has many, many, many different aspects.

Maybe you have kids.

Maybe you have a spouse or a significant other.

Maybe you have a job.

Maybe you have all these different things that you do.

So now, you're balancing all of those things with the extra time that it would take to also care for somebody.

I know in my heart, I did everything I could for John.

You have to want to do it.

But he gave so much to me.

It was just a small gift to give back.

[MUSIC PLAYING] And you just took the yellow one, didn't you?

Did you just take the yellow one?

Oh, man.

My name is Hannah.

I probably would describe myself first and foremost as mom to Gage and his two younger siblings, Caleb and Gracie, that just joined our family recently.

And then a less natural and easy to embrace title would be, in our scenario, caregiver.

A lot of individuals serve in caregiving roles, whether that is for children, maybe it's for an adult child with a disability.

Or maybe it's for a parent or a loved one.

And so part of it is people don't recognize their role as a caregiver or don't recognize that term.

According to our numbers, there are 800,000 unpaid family caregivers in the state of Missouri.

And they are providing over $11 billion worth of care.

If you are at all involved in caring for someone on a volunteer basis, you've seen somebody struggling to do it.

I don't think anybody expects what parenting ends up looking like.

But for our journey, parenting has kind of an added layer.

Gage had congenital CMV at birth.

And because of that diagnosis, he has lifelong disabilities and challenges that are everything from physical limitations to epilepsy.

And so being his mom and dad is the joy of our lives.

We love it.

That doesn't mean it's not hard and it has challenges.

Jumping in the pool.

That's your favorite, isn't it?

Gage.

HANNAH WINGO: The level of care involved is different than people expect.

I think you could describe it as a roller coaster because there's highs and lows.

Usually when strain is measured with caregivers, it focuses on physical, financial, and emotional strain.

And emotional strain tends to be the type of strain that family caregivers report the most.

A lot of times, that will manifest in things like feelings of isolation, feelings of loneliness, overwhelm.

We were young parents at the same time as our entire group of friends were.

And we had this different situation that was feeling isolating.

And so it was easy to slip into a dark place because you're not, I don't think, naturally equipped to handle that.

It's easy to spiral into a place of thinking everything's hard, and nothing's getting better, and there's no end in sight.

And there's no light at the end of the tunnel.

So seeking support was big for me.

But it took a long time.

As Gage grew older, and through different times, I struggled more or less.

And I think the opportunity, the gift to be parents to other children too helps you along and out of that.

And then I've also sought out some therapy that has been a help just recognizing why I feel certain ways.

And the root of the anger that I feel is normal.

And it's just another emotion, the same way that joy, and love, and things I would rather focus on.

Another misconception that's real common is I can do this all myself, not realizing the need for a care team until you've been in it for a little while.

They're trying to take care of the family, trying to take care of this person that's ill at their home, and trying to take care of themselves.

And the three of those things combined, something's going to give.

Usually it's the person themselves, the caregiver themselves is what gives.

I try to tell people, hey, it isn't so much that you can't do it yourself.

But you can do it even better if you have some help too.

Then you can take some breaks, recharge your batteries.

And then imagine how good of a caregiver you would be.

Another thing is just having social support.

So a lot of caregivers are primary caregivers.

And about a quarter of them don't have support in any way.

Programs that provide respite would benefit a caregiver's mental health, just in the sense that they would be able to take care of some things that they don't have time to do or that they can maybe even do something nice for themselves.

We need to be able to recharge and refresh.

And that guilt comes in because we love the person.

And we care about that person.

Also, because we want to be able to do it.

If we say, oh, I'm having a hard time, that might make some people think that we can't do it.

Or you would feel-- some people have feelings of being weak or I'm not enough.

But that's just not the case.

Instead, the case is that you are human and perfectly made.

And humans need that break.

They need somebody that is on their side.

They need to be able to do a little bit of a tag team and come back refreshed and more ready to be that caretaker.

I've been spewing too much.

Yes.

[LAUGHS] Steve and I met in 2012.

And we've been together ever since then.

We're not married.

He's my partner, my significant other.

When I first met Steve, I was in the not-for-profit world for many years.

So I've had a really long career.

And then, of course, that all pretty much came to an end when Steve got sick.

One day, it all changed.

It was at this couch and the bottom of my left foot, the ball it, felt like I'd stepped on something.

And I'd gone hiking the day before.

And I came out of the shower and I said, Shelly, something's wrong.

So we head for the ER.

And the next thing I remember is waking up and knowing I can't move anything.

I usually don't cry.

I usually don't cry when I tell the story.

But it's like, it seems unreal.

He was paralyzed from the shoulders down.

When they admitted him to the hospital.

They ran a bunch of tests on him and finally diagnosed him with acute idiopathic transverse myelitis.

I didn't deal with it at first very well.

I found myself self sleeping a lot, feeling very fatigued, very depressed.

And I ended up in the emergency room twice in one week with out of control blood pressure and a racing heart.

And they boiled that down to anxiety.

And I actually did get anti-anxiety pills to help me.

I feel I'm coping well.

But I don't know if I am.

I tell myself I'm coping well.

But I don't know if I am, to be honest with you.

When you get up in the morning, hopefully you're getting some nutrition in there.

Maybe you're moving your body.

Of course, your work schedule, but then also, what are you going to do?

What is the caretaking routine?

And what is your routine for yourself when you get back home or when you have your time?

Being able to have some little peace, hopefully every day, and I know that might not be possible for everybody.

But I hope that as a caretaker, you have a little bit of a break.

I think one of the ways that we cope together is just having these types of conversations.

Be like, hey, I'm feeling this right now.

Or I need this right now.

Or I don't need this right now.

And so I think that that's how the two of us cope together.

A lot of studies focus on burden and depression among caregivers.

Although not all caregivers do experience those things.

A lot of caregivers have tremendous coping resources.

And they're able to find meaning in caregiving and find that they're learning new skills or that they're contributing positively to the person that they love, that they're giving back to the person who gave so much to them.

Being able to do your best and know that sometimes there's mistakes.

So you get a restart.

And you get another restart and another restart.

Bringing grace into your life also brings gratitude.

And that's the next one.

Being grateful for some of the things we asked about, the joys and the things that you get from being a caretaker.

Finding those, paying attention to them, sitting with them a little bit.

Because when we do, we see them more.

We see these beautiful things around us.

And we're able to have a little bit of lightweightness when we need it.

My grandmother has lived with us, me and my family, my entire life.

Progressively, her health got worse and worse.

She was diagnosed with lung cancer.

And that was kind of like the downturn.

I call her Moppy.

Moppy is her nickname in our family.

And we call her Lazarus because she just does not-- she always comes back, it seems like.

She was always having issues doing things physically in the home, making food, going to the bathroom, taking showers by herself.

Or if she could do it, it may not be 100% safe.

So she needed somebody there.

I lived in a small town.

And the only places you really could work was fast food or service working and stuff.

So I was like-- my parents told me, if I helped out with Moppy, that basically, I wouldn't need to go get a job.

And so I started on that path.

And I started taking care of her pretty 24/7.

A lot of the women in most families end up taking care of the older people in their families.

And I was always kind of angry with that.

But sometimes, you just have to tell people how they can help.

And that's all they're looking for.

I believe the National average is 60% to 65% women.

Obviously, it's gender roles.

And the fact that as far as we've come with that, we still expect women to take on most of the burden of family care in all realms.

The other thing, and this is still related to gender roles, but some caregiving tasks are very intimate.

And women are more accustomed to providing that type of care.

My mother is a nurse.

So I was raised around the medical terminology.

I kind of knew what was happening with her and what to expect with certain things.

A lot of caregivers perform medical tasks.

And they don't know how to do that.

The average person doesn't.

And so providing training, so that they can be more confident and feel like they're really doing a good job, then promotes their confidence as a caregiver.

For a long time, I've struggled with mental health.

I mean, I think it's very common at this point.

We just have the vocabulary to label it now.

So I struggled a lot with depression and anxiety, probably ever since middle school.

And so it was very interesting because in some ways, I just felt so much more empowered knowing that I had a skill in doing something.

I've learned a lot about how capable I am as a person.

It really, really helped a lot.

I got so much more confident because I realized a lot of what was hurting me when it came to my mental health was not feeling like I could do anything by myself, like feeling I could do anything for myself.

And so to reframe the idea of caring for a loved one in our society, it really could help to counteract that feeling of burden and then also place a higher value on caregiving.

So that maybe there would be more incentive for federal or state governments to give benefits to caregivers.

The emotional toll, I think, is very, very hard.

And I think that the financial side is so tricky, too, because I feel like everybody who is at least a primary caregiver, at some point, has to walk away from work.

Whether that is I have to take a leave of absence, I have to go on vacation, or I have to leave permanently, at some point, they are going to lose income because of being a family caregiver.

A lot of family caregivers go into debt over caregiving.

Or they're not able to save money for themselves.

Obviously, those strains, they produce a lot of anxiety and worry among caregivers.

Now that I've been out of work, I am no longer contributing to any Social Security.

So that is one way of me not being able to be financially secure is that I'm losing Social Security by not working full time.

More than half of caregivers are working.

And more than half of those caregivers are working full time.

And then they're providing maybe 20 hours a week on top of that of informal care for their family member.

And so they simply don't have the time.

It's just a fact that most people who take time off of work are not going to get paid for that time.

That, in and of itself, if you have to take a loved one to a doctor's appointment and it's your shift to work, that means you're going to lose money.

That is a very, very simple, very common thing that everybody does for a loved one.

And you've already lost money.

This is definitely something that we are trying to have the conversation with employers about is being understanding of those situations.

So interventions that focus on allowing for flexible work schedules and flexible work arrangements, like working from home and being able to stay with the care recipient, are really useful.

I looked at various resources that might help family caregivers with different types of strain.

And what emerged as the most important was having a supportive supervisor.

So regardless of whether or not the person had those benefits, if they felt that they could tell their supervisor that they were caregivers, they had less emotional strain.

One of Gage's therapists through the First Steps program, I remember he was probably about a year old when she started mentioning that we should look into support through the next step.

And we should pursue trying to get Medicaid for him.

And so one of the first obstacles was me.

Because I was like, we don't need that.

I didn't understand that that would be our lifelong need.

And we, in fact, would.

I mean, the cost for his prescription meds alone was more than our family could afford on a monthly basis.

There was a mountain of obstacles in the way for our family with two incomes and some of our own assets.

We did not qualify for any assistance.

And one of the programs that the state of Missouri has is called the Missouri Children with Developmental Disabilities waiver.

That, for us, was a complete game changer.

And we had been told it would be.

But the paperwork, and the hoops to jump through, and the ways to access it were not clear and not easy.

And it was a big struggle.

Having some coverage for that helps us fund other care for Gage through our self-directed employees.

Screech, vroom, screech.

Having someone you know is a little easier to transition to than a stranger.

That was a little over 2 and 1/2 years ago that I started working for Gage.

Let's do a little arms.

This will make a big muscle.

Because so many of the instances where I've been a caregiver have been funded from the government, I feel like there is a huge disconnect in what this is actually accomplishing.

People like to look at the money.

And I think when we try to value things based on a dollar, we're making a huge mistake culturally.

If people could see in and see what it actually takes, both physically and emotionally, to care for someone else who can't meet their own needs, I think the attitudes about budgets would change.

It's the Department of Mental Health that oversees that funding.

But you can't work with them directly.

You have to have a support coordinator that is assigned to your case.

And in Greene County here in Springfield, it's the Next Step program.

So we did work with a support coordinator.

But one of the frustrating things is like, I don't think those people in those roles always have a really strong understanding of what exactly you need to do and how you need to do it.

And so I felt like we were still kind of figuring out our own way, yet couldn't directly access anything.

Here in Missouri, it can be really complicated.

Part, again, is that basic education on how to navigate for both public consumers, but also individuals working in this field.

You shouldn't have to work in the field for 20 plus years to figure out how to navigate it.

That's a problem.

A lot of people could look at our situation from the outside in, they could see Gage and where he was and assume, well, you'll get everything you need.

There's resources for that.

There's help for that.

Gage would qualify for that.

And I was getting told that over and over and over.

And I'm like, how?

Tell me the ways.

Tell me who to ask.

Tell me what to do.

Because it's not a guarantee.

And it's not a simple process.

And there's such a huge amount of information.

It feels like no one person has a strong handle on all of it.

That's one of the things that we're trying to have better navigation across different areas of care to help get people where they need to go.

It feels like the default sometimes is to just say, nope, we're not going to do that.

And then there's an appeal process to go through.

The wheelchair Gage is using now is something that was denied three times to be paid for by Medicaid before we got a yes answer.

And then ultimately, when we got the yes, it was like, good Lord, why?

Why did people say no to this?

This is clearly a need that he has.

There's a lot of resources in the Ozarks.

But access to them is hard.

And navigating all the different small versions of it, it's all a bunch of small things.

You have to patchwork it together.

So knowing where all the help is and procuring the help is a big need.

And that's one of the big things we do.

We'll talk to someone and help walk them through applying for Medicaid.

We'll walk them through relief programs for caregivers.

So we help people navigate a lot of that stuff.

Senior Age is one of the Area Agency on Aging.

We're a nonprofit.

The nation's divided up into-- every county has got access to an Area Agency on Aging.

We cover 17 counties in South Central Missouri.

AARP is a social change organization dedicated to the 50 plus.

We have a membership of nearly 40 million nationwide and over 700,000 here in the state of Missouri.

We are primarily an advocacy organization.

We've been pretty focused on caregiving for a while.

We passed the CARE Act requiring that hospitals actually provide training to caregivers.

Medicaid expansion, when we worked on that, our main focus was making sure that caregivers who have to leave work can continue to have health insurance.

The thing I worry about more in the state of Missouri is those disparities from area to area here.

Springfield is fortunate to have two major hospital systems.

But we have people who live in the shadow of a hospital that wouldn't be able to get services there.

The disparities that we have in the state are addressable.

I think we are constantly having to evolve and learn new systems to do that.

We know that the number of seniors over the next less than 10 years is going to outnumber the number of children.

As a system, I think we need to be thinking of are we ready for that?

The top need that we know from people who identify as caregivers is the need to navigate those services.

Where do you go when you need help?

I didn't know what I was going to do because it was getting harder for me to take care of him.

Sometimes you just think that there's no one or anything out there.

But there is.

And there's options.

One day, my girlfriend and I was talking.

And she says, why don't you consider hospice?

And I go, well, he's not dying.

And she goes, no, it's not just for that anymore.

It's for comfort care.

I didn't know that.

I called hospice.

And they came out.

They explained their program to me.

The next day, they had the bed in.

They had the supplies in, everything that was needed.

And the day after that, I started had a regimen of people coming into the house.

And I will admit, it was scary.

But honestly, it was the best thing we did.

I never met such compassionate people in my life.

They really cared about John and me.

This is really ennobling work.

This is important work.

Our caregivers are really the backbone of our healthcare system.

And if we don't do enough to feed our caregivers with resources, whether that is support, knowledge, financial in whatever way, then we're going to put more stress on those more formal systems.

The job definition is in the title.

You have to care.

And you will be giving.

HANNAH WINGO: What have I learned most about myself?

That I am not in control.

It is not up to me if he walks, or talks, or eats the way every other kid eats.

It's not up to me, ultimately, whatever outcome may come for him.

So I have learned about myself that I cling to any amount of control by nature.

I want to be in charge.

I want to decide how things work out.

And caring for Gage and being Gage's mom has taught me that that is an illusion.

And that even if we think that we're making things better or getting to decide, it's not up to us.

There were days he couldn't even remember my name.

And that hurt.

And one day, he said to me, I'm so sorry, I don't know you.

But you sure put in a lot of hours here.

And I said, yes, I do.

[MUSIC PLAYING] ANNOUNCER 1: Funding for this program was made possible by the Greater Washington Educational Telecommunications Association and the following local sponsors.

WOMAN: Central Bank of the Ozarks, offering investments, loans, business and online banking services at 21 locations throughout the Ozarks.

Information at centralbank.net.

Mid-Missouri Bank, celebrating 152 years of service and offering Kasasa products and personalized banking at 13 locations.

Information on locations and hours at midmobank.com.

Community Partner Classic Wood Floors, featuring custom-finished solid wood floors for new construction or remodeling projects.

On the web at classicwoodfloors.com.

MAN: Wild Birds Unlimited in Springfield, featuring wild bird foods, products, and advice for the backyard hobbyist.

Wild Birds Unlimited of Springfield, bringing people and nature together.