(upbeat music) - Will you "Consider This"?

I've got a guest here who wears many, many hats.

You've probably read some things by her because there's always something to write about for Monica Vest Wheeler.

Welcome.

- Welcome.

We've known each other forever.

- Yeah, we have, but you're not from here.

You're a Hoosier.

- Yes, I'm a native Hoosier, yeah, Anderson, Indiana, and my husband and I met on the first day of high school when I was a junior and he was a senior.

He went home and told his mom he met the girl he was gonna marry.

- [Christine] All right, well then what brought you guys here?

- He called in February of '79 and said, "I have a job with Caterpillar."

I said, "What's Caterpillar?"

And he says, "It's in Peoria, Illinois."

And I said, "Where's Peoria, Illinois?"

And we've been here since July of '79 when we got married.

- Really?

Good.

And then where did you start working and using your craft of being curious and writing?

- I started writing when I was a little kid.

My mom saved a couple of my poems and it's like, oh, those are just so wonderful, but at the time I picked up a pencil, I just was always writing like crazy.

Then I decided to take newspaper classes in high school because I figured that writing the great american novel wasn't gonna pay the bills.

I was a little bit practical back in those days.

- Really?

But that's pretty good.

- Yeah, I was like, "Okay, so we'll do this."

But yeah, and then I so went into newspaper, then when we came here, I worked at a local newspaper, community newspaper for five years, and then switched over and then I was fired from my job in January of '92.

Best thing that ever happened to me.

- [Christine] There you go.

- Success is the best revenge.

- It truly is.

- Yes.

- So, all right, so you did the newspaper thing, the day to day, blah, blah, blah, blah.

On the side, we were also getting a little bit of information to put together some of your books?

- Well, in '94 I was asked to work on a history of the Park District, the 100th anniversary, so that book came out that year.

It's like, "I love this."

I've always loved history.

And so then it just kind of escalated from there, so I've written, just finished another one, so I've written about 12 regional history books on, you know, a little bit of everything and I just love it, listening to people.

And I always felt uncomfortable around older people when I was a kid.

They terrified me.

- [Christine] Okay.

- And now I spend a lot of my time engaging with people about their memories and history and in telling stories and it's like, "Where did that come from?"

- Right, so, okay, what was the first thing then post-news business, what was the first thing that you wrote?

Was the history of the Park District.

- Yep, which we were so glad that they did the special here at Channel 47 based on that and so that was so exciting, but yeah, and then just some other history of entertainment and business and reading, writing and religion.

And then I was asked to do another history of the College of Nursing at OSF St. Francis, did that, then St. Mary's in Galesburg, a couple of company histories, and like I said, I just, I love the gather, I love... My mom went to a psychic years ago who told her, "I can see your daughter sitting in a dusty room."

- Hmm.

Okay.

- Ta-da.

(both laughing) That I have searched through the every closet in Peoria.

That's what I joke with people about, but have found treasures 'cause a lot of people don't know what to do with stuff they've got and a lot of families are pitching things and it's like, ah.

- Please don't.

- Please don't.

- [Christine] Yeah, so they need to find you.

- Yes, I know it.

- And then so you really are digging up stories.

- Yeah.

And I think it just, it works out too that I also interviewed Holocaust survivors across the country and I got a book that's pretty much done, but I don't know what it is.

I've just been terrified of putting it out there, but I decide, I think this year is the year that I get past all my fears of putting things out there because I've got dozens of novels that are done sitting on the hard drive, and I don't know, it just, I'm still very much an introvert, but yet I get up there and I sing and dance at stroke camps and my husband went with me to the first one.

He's like, "Who is this person?

She's not the person that sits at home."

(Christine chuckling) But it still takes a lot of courage and energy for me to, but I deal with all these emotional topics.

- Right.

So let's switch hats from books right now to go to what you're doing, stroke camps all over the country.

- Yes.

I had written a book on coping with Alzheimer's back in 2008.

- [Christine] And how did that come about?

- Well, I had co-authored a cancer book with Dr. Joy Miller and Diane Oberhelman.

The Alzheimer's Association came to me afterwards, wanted to know if I'd be interested in doing something for them, the local chapter.

I said, "Well, sure."

And so I did that came out in 2008 and I decided I wanted to stick to brain-related topics because they're so misunderstood, there's so many stereotypes, and the isolation, social isolation is horrendous.

- [Christine] Well, it's more than lonely for some of them.

- A lot of people get a diagnosis, or after a stroke or brain injury, they go home and shut the door and they never come out again.

And people don't know how to act around people.

- [Christine] Right, exactly.

- 'Cause I've had families tell me that they see kids coming toward them with their parents, and all of a sudden the parents will veer their kid the other way.

- Oh, oh.

- When a person's using a walker or in a wheelchair or maybe not walking or talking right, I mean, so this is just my real passion to wake people up to, those folks survive for a reason and they have so much more to give and that's what I tell them too.

- And then how did you, did you take any courses in... - No.

- This is just all from your heart.

- Yes, I just got a BS in, you know, journalism.

- A BS.

- Yeah, there you go.

That's what I'm told all the time, yeah, and I love that because I just, no, I'm not a medical person, but I've learned so much about all this on the side because I've engaged with survivors and caregivers and also with folks with brain tumors, brain cancer.

Alzheimer's families are suffering something terrible, and so I become a mentor to Alzheimer's Association facilitators in Illinois and Indiana because they need help too.

They're hearing all these stories, what families are struggling with.

I've heard everything in caregiver support groups and discussion groups.

- What's been the most amazing that you've heard from them?

- The one that really got me the most was the caregiver said they just wanted to drive off a cliff with their loved one to end up for both of them.

It's like, "Okay, you need some help."

- Right.

- We need to get you some help.

- Right.

- But the frustration in being tired is taking a toll.

It's a tsunami of caregiving.

Society doesn't know how to handle it.

- [Christine] 24 hours, right.

- Yeah, and it's just completing this book on the preemies at OSF St. Francis, we are saving lives now, but we don't know what to do with the lives that are being saved because, and it was stroke and brain injury, you know, a lot of folks who passed away 10 or 15 years ago from those things are now living.

- Right.

But they're not necessarily living a good life.

- Right, yeah.

And again, it's, you know, it cost a lot of money.

It put many families in bankruptcy and pushed many, you know, the emotional edge, and I'm seeing, you know, I witnessed it firsthand in 2010.

A dear, friend who was an Alzheimer's caregiver, her body simply gave out, she died.

I was with her there at the last and they couldn't figure out what was wrong, but she simply died.

- Her body just said, "I can't do it anymore."

- Right.

And then her husband, who had no idea what had happened to her, he lived four more years.

So this family didn't lose just one person to Alzheimer's, they lost both.

- Lost two, exactly.

- And I've seen other caregivers who don't go for their annual checkups or, you know, they got a problem, they don't get it checked out, "Oh, I don't have time, I gotta take care of them."

And then all of a sudden they get stage-four cancer and boom, in a couple months, they're gone.

- How do you direct them then?

How do you steer them in what's healthy for them or where they can get help?

'Cause obviously, you've got a lot of those answers.

- Well, I know you're tired of hearing this about when in the airplane, when the thing comes down, you put yours on before you help anybody else, but that's the standard line that's given, and as trying to explain that, if you think people are gonna be upset with you asking them to help out now, they're gonna be really mad at you if you die.

- [Christine] There you go.

- And I also- - That's just practical.

- I know it and I tell folks, you know, I don't wanna read on your tombstone what a great caregiver you are.

And I remind them too that your life is just as important and valuable as the person you're caring for and sometimes the look I get back in the discussion group is like, "Really, I hadn't thought about it that way before."

- Right.

- And I've given a lot of hugs.

On the end of the session when we meet in person, I give hugs on the way out and they're like, I haven't had anybody turn me down yet.

- [Christine] There you go.

I like that.

- Yeah.

- I like that.

So, all right, so you've worked with Alzheimer's patients and their caregivers and stroke patients, and obviously their caregivers.

You are also doing some things with Parkinson's patients too?

- No, I haven't, not directly, but I'm meeting more, we're finding more folks who've had stroke and with Alzheimer's are developing Parkinson's.

- Oh, okay.

- I just was talking to some folks, but then also with brain injury, we're seeing where now they're finding many folks are developing Alzheimer's or dementia later in life after a brain injury.

We discovered this firsthand with my father-in-law who was diagnosed with Alzheimer's.

We brought him up from Florida to take care of him up here 'cause we had the most flexibility of the kids.

And so I oversaw his care for 54 weeks, from the time I brought him up until the day he died, and we made the difficult decision to donate his brain for research.

Let something good come out of this.

And the findings, he had no sign of Alzheimer's.

He had vascular dementia from a brain injury 30 years earlier, which he nearly died from 'cause he fell and he said on the concrete, bad skull fracture, concussion and everything, we didn't know if he was gonna make it, but my mother-in-law always said, "Well, if I'd known he was gonna be nicer, I would've hit him in the head with a frying pan a lot sooner."

(Christine chuckling) But- - [Christine] Well, you have to have a sense of humor about those things too.

- Yes, you do, and that's the thing, you know, because I get that out of folks.

I've had survivors tell me, "Yeah, I tell them, 'What did you bring for the Thanksgiving meal?

I brought the vegetable,' and they pointed themselves."

- [Christine] Okay.

- And so this is where, and so I'm laughing with them and it's just like reminding them, again, you're still here for a reason.

You still have permission to laugh and to live and to love and to cry and to be loved.

- Wow.

And so this passion for you found you.

- I never expected.

I mean, if you told me 20 years ago that I was gonna be doing this, "No, I'm terrified of people."

- [Christine] Right, especially older people.

- Yes.

- Okay.

- And, you know, and interviewing Holocaust survivors and I heard every story out of them.

Terrifying, and that's what troubles me so much about what's happening in the world today- - Exactly.

- Not believing because, yeah, it happened.

And the hatred and everything that is coming up nowadays, it's happening.

- [Christine] It is hard to wrap your mind around it.

- Right.

- Especially.

So, let's talk a little bit about this one really got you.

This is about the NICU, so at OSF St. Francis and Children's Hospital.

It's the Neonatal Intensive Care Unit.

How did that come about?

- Dr. Tim Miller who started the unit back in '73, he came to me in December of '17 and said, "I'd really like to do this.

You did a great job on the 100th anniversary and the College of Nursing and all this other stuff."

And I said, "Okay, let me take a look at it."

So when I thought I fell in love with it, so I said yes before even thinking.

- [Christine] Okay.

- But I said, "I'm kind of in a bind 'cause I take care of my mom who's a stage-four cancer and going back and forth to Indiana."

But when I came home, I did interviews with folks and started, and I thought, "I love this project."

And it's so overlooked that we set the standard here in Peoria and a lot of people don't realize the advances- - [Christine] What we have here.

- Oh yeah, and it's like, "Quit putting down Peoria."

We were ahead of the curve in taking care of the tiniest of the tiny.

- Exactly, and we owe that to the Sisters because, was that 1949?

- The unit was officially organized in '42 when they set up a separate unit for it, but there was a sister who ran it and they had no training.

Just treat them with love, feed them, keep 'em warm, things like- - Just like little pet bunnies and chickens and stuff.

They figured out they needed warmth.

- Yeah, and it was just amazing, you know, because then you hear stories about some of these babies that survived back then.

It's like, how on earth did they do that?

And I remember one of the nurses I interviewed for this, she said they were terrified when they heard that they had a 28 week baby coming in, and now they're down to 20 weeks.

- [Christine] That's just amazing.

- Yeah, the technology and everything is just like, there used to be all this noise within the unit, but they realize that was not good for the baby's growth and emotional wellbeing.

- So when the new children's hospital was built, there is a really large NICU now.

- Yes.

- And more private, much more private.

- The private rooms make all the difference in the world.

It's harder on the nurses, because I went in depth with that with some of them because they didn't get that opportunity to react and see things going on in the big room and that's when they would pull in new nurses and say, "Here's what we're dealing with."

So in the private rooms, but it's given the families the space and quiet they need and given the babies- - For bonding.

- Yes.

Because this is where, I mean, you know, back in the 1800, some doctors are saying, "Children who are separated from their mother, you know, but the preemies, they're suffering later on because they didn't bond with their mother."

- Right.

- Duh.

(Christine chuckling) Has it taking us all this time to realize that?

And so when I interview these families and I talk to a couple families that lost their child, I'm sitting there crying while I'm with them, but they were so grateful that their story, their child will be remembered.

And those have a very special place in my heart in telling of all this and figuring out what can I tell about the story?

But every story was completely different and that's what made it so powerful.

That's what keeps me coming back because you get 12 people witnessing the same thing, they've all got 12 different... - Stories.

- Right.

- Perspectives.

- Yeah.

- So Dr. Albers hired Dr. Miller.

- Yes.

- All right.

Specifically to start a Neonatal Intensive Care Unit 'cause we had a baby's, I guess we had a baby's unit, basically.

- Yeah, it was, I don't think they called it neonatal at the time, I can't remember, but everybody knew it was the preemie ward, so it was just like heat, food and whatever because there wasn't the sophisticated equipment and Dr. Miller was one of the first neural- - [Christine] Neonatal intensive care doctors.

- Yeah, that was certified in the country.

- Neonatologist, that's the word.

- Yeah, I know, see they threw all that terminology at me.

But he was the first one that brought in equipment, ventilators and different things like that and they learned that some ventilators, adult ventilators, could kill babies.

- [Christine] Right.

- Because they're too hard and they're pumping too much, so scaling back and learning, so, I mean, it was a learning curve- - [Christine] For them as well.

- Right, and the nurses, I had several tell me that they were scared to death of him when he came in 'cause he was kind of quiet and it's like a dip in atmosphere there, but what he did changed the landscape of infant care in Peoria forever.

- Right, Central Illinois really benefits, yeah.

- Yes, and the lives that have been saved and the families that have learned and had so much in the opportunity and that's why those private rooms are so important now because the siblings can come in and bond with a new baby, whereas in the old unit, "No, you can't do that."

- No, kids don't go.

- No, uh-uh.

Because you'd have enough trouble getting 'em to wash their hands coming into the unit.

- Right, exactly, and that does take a lot.

You stand there for two minutes, don't you, and scrub?

- Oh yeah, I mean, I had Roz Helms telling me where it was like 15, 20 minutes was scrubbing your hands back in those days.

You didn't dare touch anything or leave because you had to repeat it.

- Right, exactly.

So you went, spent some time in the unit.

So you started this book in 2017, your research, and it just came out this year?

- Yeah, in December of last year- - Of '23, okay.

- And started promoting it in January of this year.

It just, like I said, there were times where I just had to step back.

I stepped back from it for almost a year and I'd send a message to Dr. Miller.

I said, "I am so sorry, but I just can't handle it.

It's too emotional."

- [Christine] Right.

- And, yeah.

- Did that surprise you?

Because you had been interviewing all those other people over time and it was tearing at your heart, but this one even more?

- Yeah, I think so.

I think it's because of, especially the children who were lost and the children who survived, the miracles of all those stories.

That's why it's so important to put a face on what's going on.

And the same way with stroke and brain injury.

We need to put a face on this and that's what I just felt like this call, this mission, that this is what it's all about because government doesn't get it, insurance companies don't get it, society doesn't get it, but these are real people with real human needs.

- [Christine] And struggles, right?

- Yeah, and so I just, I'm not embarrassed anymore when I sit there and cry with somebody.

- Good for you though.

- So it took a while to let down that wall within myself, so I mean, I have talked with folks that have shared stuff with me.

They'll say, "I've never told anybody that before."

I say, "Thank you."

- It's okay, right.

So how do you decide what to include then when you get stories like that?

I mean, how do you edit yourself?

- Oh, it was so hard to narrow down and I only had a short space for each story.

It's like, "Okay, what's the basics?

What's the difference?

And, okay, is this too much of a repeat of the other?"

And I agonized over that.

I mean, my husband will verify.

I would just sit there in front of the big computer and like, "Okay, what do I do with this?"

And I think about the whole consequences and it's like, and with my photography too, I shoot photos at all these camps of stroke survivors and their caregivers and brain injury and everything, and I check every single photo because a lot of people just slap up photos where somebody's looking bad in the photo.

- [Christine] Right.

- I'll lose sleep over it, making sure that it is done.

- [Christine] That everybody in the photo looks good.

- Right, I check people in the background.

I crop out somebody or whatever because it's all about the human dignity too.

- It is.

- And we've lost a lot of that in today's society so I feel like sometimes I'm this lone wolf, but I keep doing it because it is so important to our, and I've battled depression most of my life, and I've had friends and family were concerned about me taking on such difficult subjects.

- [Christine] Emotional, really deep subjects.

- Yeah, and then I've been a five-time family caregiver for my father-in-law with the Alzheimer's dementia.

My cousin, he had a heart attack and a brain injury and I had to take care of him going out to California and packing him up, bringing him back to the Midwest, and I was the only one available, and this was during Covid.

And then I take care of my mom when she had, with lung cancer, and finding out, you know, we go to one appointment and she says, "I just don't wanna continue treatment."

And so I've been speaking to medical professionals too about here's who you're dealing with with caregivers.

You get the one caregiver who's caught completely off guard.

- Right.

- You've got the others who are really kind of nasty.

When I had to demand that my cousin get a test, you know, a scan to see if he had a brain injury and the doctor said, "Oh fine, we'll do it."

And then doctor called me later and apologized.

- You have to advocate, yeah.

- You just have to, so this is where I'm also trying to encourage people, don't just accept it because the doctor said so.

Yeah, I mean, because we've got to be advocates.

Who else is gonna be an advocate for you and your family?

- Right?

You have to have somebody who's thinking or looking at the whole big picture.

- And with my aunt, my aunt quit speaking to me two years before she passed after I'd taken care of her and it's because she believed something that was not true.

And then, you know, then that last week of her life, I took care of her and she apologized to me.

So this is where it's the communication thing too.

What are we getting so upset about in this world today?

- Right.

- It ain't worth it.

- No, it's not.

Live your life and accept whatever.

So what's next for you now?

- I'm working on a new- - The Holocaust book.

- Yes.

- Finishing that.

- I've just gotta read through it one more time.

It's like, "Okay, you gotta let it go here."

At the newspaper days, they almost have to yank the pages away from me.

"We have to finish, we have to go to press."

And that is just what is so difficult 'cause I'm afraid of making a mistake, and so perfection has been a problem I've been dealing with for years.

- [Christine] But you know what?

That's your niche.

- Yeah and as media people, we're trained, journalists, we're trained to be as accurate as possible.

- [Christine] And factual.

- And if you make a mistake, you own acknowledge.

- Own it, right.

- Yeah.

And it's like today, nobody wants to acknowledge they made a mistake and I just shake my head and wanna beat it against the wall when I see the journalism of our days is sadly evaporating.

- It is, it's gone.

- And society is suffering for it.

- I think you're absolutely right.

- And then I've also interviewed a bunch of folks, I'm gonna do a new volume on Alzheimer's, speaking to caregivers.

I really got in depth.

I spent almost an hour with each one of them and got into the emotional side of it, which is so often overlooked.

We're treating all the medical, the physical conditions, but the emotional side of the patient, the survivor, the family members is so often overlooked and that's where it does its greatest damage many times.

And then with, I'm also working on a couple things, a project that I wanna do about all these camps that I've gone to.

I've gone to almost 140 stroke camps since 2008 as a volunteer.

I drive the equipment van.

They call me Iron Bud 'cause I've put on more miles on the van than anybody else.

(Christine chuckling) But I do it just out of this great passion 'cause the people I've met have changed my life forever.

- [Christine] Well, your rewards are elsewhere.

- That's it.

And my accountant yells at me every year.

"Did you make any money this year?"

"Well, I don't know, but..." And she just nods and smiles, but it's that powerful because I grew up with a mindset of my parents were never happy with each other, I was an only child, and so I had this feeling from early on that I had to justify my existence.

- [Christine] Oh, wow.

- They never indicated that, but that was something that I carried with me so I feel like maybe that's what drives me a little bit more.

- [Christine] You've got it now.

- Yeah.

- Awesome.

Well, thank you.

Thanks for sharing all these stories.

- Thank you.

- You know, and I've known you all these years and didn't know a whole lot about ya and the whole big scheme of things.

- [Monica] Thank you, it's so good to connect with you again.

- You too, Monica.

I hope you enjoyed hearing all she's got.

She's got plenty of books.

If you're looking for anything, you can find 'em.

So thanks for joining us and remember, be well.

(upbeat music) (upbeat music continues)