Facing the Wind

The Chang Yung-fa Foundation Maplewood Senior Living, and its Inspir Communities.

And these supporters... CARLA PREYER: So...ladies, I have a question.

How old were your husbands when you first started noticing their symptoms?

LINDA SZYPULA: Jim was um 56-ish when he first told me he was at work and he couldn't remember what the second floor of our house looked like, which means I was 40, 45 at the time.

JAX BROWN: Oh.

LINDA: So, yeah.

[voice breaks] CARLA: Patrick was 58.

We went to Tahoe for our anniversary, and we get back to the hotel and then he says, "I don't do things like this."

"You don't do stuff like what?"

He said, "I don't bring young girls to the room.

What are you, 24, 25?"

And I was like, "Oh, now, Mama's still got it on."

You think I'm 24?

That's what I'm talking about.

So, I had to make light of it to keep from crying.

LINDA: Sadly, we know what we're all going through.

WENDY COGAN: Yeah.

JAX BROWN: Yeah.

CARLA: Hey, I got to step out a minute.

LINDA: Okay.

CARLA: My husband's walking down the street.

LINDA: Go get him.

Go get him.

[Women laugh] [Soft lyrical piano and guitar music] [Sound of footsteps] CARLA: You're in a hurry.

You pulling me today.

[Music picks up speed and continues] [Linda kisses husband] PATRICK PREYER: Where we going?

CARLA: Over here.

See, here's your house right here.

See?

See the butterflies on the house?

That's how you always know we're home.

LINDA: You going to get something to eat?

JIM SZYPULA: I like that.

LINDA: Picture?

JIM: You could put it there.

[Footsteps] JIM: Where you going, Bella?

Come on, Bella.

Run, run, run, run, run.

And Roxy.

No, Roxy.

Bella.

Oh, the wind is blowing.

Blowing those leaves, Rox.

[Sound of wind] [Music continues over opening title] [Music ends] [Sound of cars on busy street] LINDA: Wow.

I haven't seen these in, like, 30 years.

SARAH SZYPULA: The old RV.

LINDA: Awwww.

SARAH: This is our old RV.

LINDA: Happy Father's Day.

Who did this?

SARAH: [reading] "My daddy is the most wonderful daddy in the world.

He is as handsome as a flower.

He's as strong as a truck.

He can lift 50,000 pounds."

LINDA: Geez.

SARAH: "And is 10 feet tall."

LINDA: [laughs] Do you remember that?

JIM: Yeah.

LINDA: I was working on Morey's Pier, an amusement pier.

Jim was the electrician on the pier.

We passed each other and just at that passing, I locked eyes with him.

JIM: It was a one-of-a-kind look that we gave each other.

LINDA: And I said to my best friend, I'm like, "I'm going to marry him."

JIM: We promised each other that we would take care of each other.

LINDA: He is my knight in shining armor.

I had a rough childhood, and he just came along and swooped me off my feet.

[Voice breaking] You know, built me my dream home.

I have three amazing kids.

SARAH: Oh, it's just us.

You and me, Daddy.

JIM: Yeah, it is.

Where's Matthew?

SARAH: He went to school.

LINDA: I just want to try to make him be as happy as possible while he still can have some joy.

CARLA: Let's go get your breakfast, okay?

Come with me.

Come on, big daddy.

Come on, big daddy.

[chuckles] Okay.

Take your blood pressure.

You never saw me as a nurse, huh?

[Laughs] Do you miss those days when you used to be a nurse?

Let me see this hand.

Patrick was a OR nurse in the operating room, and he loved his job.

He did not want to retire, but he knew something was going on.

He didn't know what.

The doctor would say, "Get me an instrument."

He would go to get an instrument.

By the time he got there, he would forget.

It got to the point where he really couldn't do it and he said, "I can't go back to work."

PATRICK: I think I should finish it up.

CARLA: Okay.

Okay.

Finish that up.

They started doing all these tests.

They had him in anger management class.

It must be real good.

PATRICK: No.

CARLA: It's not?

PATRICK: Mm-mm.

CARLA: I would never be able to tell it.

[chuckles] The goofy side of him, the fun, that had disappeared.

WOMAN: Everybody ready?

PERSON [Off Camera]: Yes.

CARLA: Hi.

How are you?

VIDEOGRAPHER: How are you feeling?

CARLA: Wonderful.

VIDEOGRAPHER: You're ready to go.

CARLA: I'm ready.

I'm ready.

VIDEOGRAPHER: That's good.

CARLA: No jitters, no nothing.

I'm just ready.

VIDEOGRAPHER: Isn't that great?

CARLA: Love you, Patrick.

[laughs] [Bouncy upbeat piano and guitar music] [Patrick exhales heavily] CARLA: Patrick had a great sense of humor.

PJ PREYER: Put your head down while I check your hair to make sure you don't have any grease [inaudible].

PATRICK: Oh, well, thank you.

CARLA: It was one of the things that brought us together.

He was also loving, protective.

PASTOR: I give you my love.

PATRICK: I give you my love.

PASTOR: As long as we both shall live.

PATRICK: As long as we both shall live.

CARLA: He prided his self of taking care of the people he loved.

[Applause] [Birds sing] [Cars driving on street] [Rumble of car engine] CARLA: It took four years to get a diagnosis, and I had to fight for that diagnosis.

[Sound of cars on highway] [Dramatic music] CARLA: In the beginning, they kept saying mild cognitive impairment, and then as time goes on, I was like, "No, this is way more than that."

I wasn't getting any answers, so I took him out of the network.

I finally took him to Stanford, and they gave us the results.

I remember that day so clearly.

The doctor called me, he said, it was Lewy body dementia.

We got off the phone and Patrick, he just got up from the kitchen table and he sat down in the middle of the floor, [voice breaking] and he just played with the dog for about three hours straight [cries].

[Street noise] JIM: I was first diagnosed five years ago with Lewy body dementia.

When I read the lab report, I...I was scared.

There's no cure for this stuff.

[Tea kettle boiling] LINDA: Lewy body is the second most common dementia and the most misdiagnosed.

[Kettle beeps] LINDA: We call it the roller coaster ride because with Alzheimer's-- you're kind of on this steady decline.

And with Lewy body, you go up and down.

There'll be times they're acting totally normal.

The literature says like people live five to seven years.

What are we supposed to do in the meantime?

I'm a science teacher, so I started doing research.

There was one Facebook page where this gentleman... ...his name was Curry, a Texan.

He's so open and honest and it's making me feel like I now understand more what Jim's going through.

[Music with country twang] LINDA: And I told him, "You know, there's so little information out there, we should start a podcast."

[Sounds of a farm, cows and chickens] CURRY WHISENHUNT: You're all excited.

When Linda Szypula first contacted me, I thought she was a nutcase.

Thank you, babe.

All of a sudden, I got this lady saying, "Hey, do you want to do a podcast?"

And I didn't even know what a podcast was.

LINDA: I said, "You know, we could bring people with Lewy body and caregivers on and share everyone's journeys."

LINDA'S AUDIO FROM PODCAST: Wow, Curry, exciting.

We're finally getting our first episode off and going.

CURRY'S AUDIO FROM PODCAST: We're building a family and want all of you to be a part of this podcast.

LINDA'S AUDIO FROM PODCAST: Our goal is to share and discuss everything from pre-diagnosis symptoms to diagnosis and everything in between and beyond, including the fact that no two people with Lewy body are going to have the same exact symptoms.

CURRY'S AUDIO FROM PODCAST: Exactly.

LINDA: And then, we started support groups because we all felt so isolated.

FEMALE SUPPORT GROUP MEMBER: I have a question real quick.

LINDA: I started one for just spouses.

CURRY: How's everyone doing today?

LINDA: And then, Curry wound up starting one just for those with Lewy body.

MALE SUPPORT GROUP MEMBER: I just got diagnosed this past June.

My wife, she ended up leaving.

She tells everybody that I'm faking it and I just got lazy and didn't want to work anymore.

CURRY: Oh, my gosh.

MALE SUPPORT GROUP MEMBER: And a like a switch turned on in my brain, like a suicidal impulse, that it felt like my brain literally wanted my body to kill itself.

CURRY: Oh, wow.

Let me see a show of hands.

Who all has ever contemplated suicide?

Yeah.

See, there's others in your shoes.

You're not alone in anything you're going through, man.

You're not.

[Sound of door] CURRY: You lose a lot of friends because they don't understand.

[Click of lighter] CURRY: People see you on a good day, and they think you're faking.

[Sound of chimes] [Dramatic eerie music] CURRY: I had my first symptoms when I started truck driving.

We decided to sell our house and my wife, Linda, jump on the truck with me.

That's when the auditory hallucinations started.

I would say, "What'd you say, Hun?"

And she'd say, "I didn't say anything."

CURRY: Then, my visual hallucinations started.

[Sound of truck driving by] CURRY: I started seeing people getting in my truck, ransacking my truck.

All that scared me.

I mean, it scared me bad.

My last ride home, it was like three o'clock in the morning.

Dividing the north and southbound lanes is concrete barriers and all of a sudden, I'm heading straight for that concrete barrier.

But it didn't happen.

[Music fades out] CURRY: I really thought I was going crazy.

We went from doctor to doctor, and they couldn't find anything wrong.

[Lighter click] CURRY: Most of them brushed me off, just like one of the emergency rooms thought I was an alcoholic.

I thought all the time about ending my life.

[Wind blowing] [Solo guitar playing] [Jim tuning guitar] JIM: One of the things about Lewy body, that if you have a skill that sort of makes you feel like being able to function, that's very helpful.

Back in the '80s, I was performing six nights out of a week in a band that was called MacLean Affair.

Playing an instrument, it's one of those things you love to do.

[playing guitar] Sometimes, it's pretty tough, though.

LINDA: Are you tired?

JIM: Mm-hmm.

LINDA: Why don't you go take a nap?

Don't be sad.

Why are you sad?

JIM: This is my "it's-not-fair-cry."

I can draw pictures; retirement is so wonderful.

It's not that way.

LINDA: Let's get in the RV and go.

Yeah?

JIM: Hmm?

LINDA: Let's get in the RV and go.

JIM: Yeah.

LINDA: That'll make you happy.

JIM: Yeah.

[Kiss] [Lyrical guitar music] LINDA: It was always our retirement dream that we were going to get in an RV and just go around the country.

JIM: Hi, Sarah.

LINDA: We did that with the kids when they were younger.

He wants to see as many national parks as he can.

MATT "MANNY" GILLIANO: Who loves you?

[Camera clicks] LINDA: One of my dear high school friends who's so close with Jim, he's going to help with the driving.

We're going to go and visit people in the support group on the way.

My hope is that the trip helps him go on the upside of the roller coaster.

Jim, do you see this?

JIM: Yeah.

LINDA: And that we get to see a little bit more of who he was.

[RV stops on gravel road] LINDA: This is way cool.

Look at that.

Can't get that in New Jersey, huh?

[Footsteps walking on path] LINDA: Happy now?

JIM: Yes.

Really interesting.

LINDA: Yeah.

It's pretty cool, huh?

Yeah, just take your steps slow because this is definitely not even ground.

LINDA: Wow.

It's gorgeous.

JIM: Yeah.

[Birds Chirping] [Stones being stacked] LINDA: See how high you can stack it?

No, I don't know.

We left our mark.

JIM: We should get a solo.

LINDA: Oh, picture?

You do that?

JIM: Yeah.

LINDA: It is a heart.

JIM: [whispers] Can I get a kiss?

[Lyrical guitar music continues] LINDA: To live in the moment with him, I'll take any second.

[RV driving away] CARLA: Hey, handsome.

We're going to make you more handsome.

After we got his diagnosis, I closed my salon, so I could work from home.

[Buzz of trimmer] CARLA: Patrick was going to the adult center, but then eventually he would not go.

Tilt that way for me.

So, I had to stop working.

How does that look to you?

PATRICK: Hmm, yep.

CARLA: All right, baby.

I can always lean on our son, PJ, but he lives like-- five and a half hours away.

PJ PREYER: All right.

CARLA: Thank you, baby.

PJ: I'm going to hit the road before I hit too much traffic.

CARLA: Thank you for everything.

PJ: No problem.

CARLA: Love you.

PJ: Love you, too.

I'll give you a call when I get home.

CARLA: Okay.

PJ: All right.

CARLA: You're amazing.

PJ: Thank you.

Bye.

CARLA: And if I did not have my support group- I don't think I could make it.

[Door closes] [Sound of dishes clinking] [Water running, dishes being washed] CARLA: You remember what you asked me the other day?

Remember you asked me to marry you again?

You still want to get married?

You got to think about it now, huh?

PATRICK: Mm-hmm.

CARLA: You do still want to get married?

PATRICK: Mm-hmm.

Yes.

CARLA: Oh, okay.

Twenty-one years later and we still do, huh?

[Soft poignant music] CARLA: What are you looking for?

PATRICK: [indistinct mumble] CARLA: Hmm?

PATRICK: [indistinct mumble] CARLA: What helps me to just still love on him, I feel compassion for where he was and where he is now.

He's still a kind person, still very protective over me when he knows who I am.

[laughs] He's my soulmate.

He's my spiritual partner, and that just doesn't go away.

[RV on the highway] MANNY: Ready to get some lunch, Mr.

B?

[RV door slamming shut] LINDA: Did you sleep, Hun?

Did you get to sleep?

JIM: No.

LINDA: No?

MANNY: How many sheep did you count?

[chuckles] LINDA: I thought you were tired.

JIM: I am.

LINDA: Mmmm.

Is it not comfortable?

JIM: Yeah, not comfortable.

And I'm just out of whack.

LINDA: With the travel, you mean.

JIM: Mm-hmm.

MANNY: Not in your comfort zone, right?

JIM: Yeah.

LINDA: Somebody in the support group said that there's a wheelchair that I could get you, that you can take it over rough terrain, if you're having trouble walking.

Would you want me to get that?

JIM: You?

LINDA: For you.

JIM: No, not for me.

I'm trying to stay away from that.

LINDA: You know when we were in Shenandoah, you were...you couldn't walk that rough, rocky path.

JIM: No.

LINDA: Yeah, you're tired.

We need to figure out how to get you comfortable in the back.

MANNY: When you go back, I'll go like this with the wheel, and I'll rock you to sleep.

Think that'll work?

[Laugh] LINDA: What do you mean when you say you're out of whack?

JIM: I don't know.

Just...here I am and it's like, uh...I can't get away.

I can't get away from it.

LINDA: Yeah.

Mmm.

Come lie on your stomach.

This way, yeah.

Are you cold?

JIM: Yeah.

LINDA: All right.

Sleep away.

JIM: Okay.

LINDA: All right.

Okay?

JIM: Can you stay with me?

LINDA: I'm going to get car sick.

JIM: Okay.

LINDA: Do you need me to stay with you?

Huh?

JIM: Okay, you can go now.

LINDA: I can go now.

Are you sure?

JIM: Yeah.

[Footsteps in RV] [Turns the light off] LINDA: All right, Roxy.

It's just us.

Let's go.

He's acting very strange.

He wanted, he asked me if I could stay back there with him.

[Settling into front seat] LINDA: He sounded...it's sad.

He sounded like he was a little kid asking Mommy to stay with him.

He's very out of sorts today.

I'll go back and check on him in a little bit.

MANNY: Okay.

[Poignant music] WENDY COGAN: Linda, what's going on?

LINDA: It's really hard for Jim to travel.

He gets very anxious.

He can only do, like, three hours, three and a half, it's pushing it.

Several times, I thought I just can't keep doing this.

TRACY SHIELDS: Yeah.

I have just been losing it with him, screaming at him, and I want to run away.

CARLA: The other day, Patrick did something that set me off.

I'm jumping...like a mad woman jumping up and down.

"Shut up!

Just shut up!"

[Women laugh] CARLA: I didn't know anyone else had those moments.

Tracy, I thank you for saying this.

And you know what, Linda?

I'm really impressed with you.

The courage you have to travel.

I can't wait for you guys to get to California.

[Road noise] LINDA: All right.

So, we got three hours till we get to Curry's.

Do you want your guitar?

JIM: Whatever I'm allowed to do.

MANNY: You are allowed to do whatever you want.

LINDA: You can do whatever you want.

MANNY: Don't you listen to your wife.

She's, she's mean.

[Jim picking notes on guitar] LINDA: So, we're going to be at Curry's for four days and I told him that, so we can catch our breath.

MANNY: I think we got to sit and talk with him more and hear what he wants to do.

LINDA: Yeah.

MANNY: You know what I mean?

It's... You got to get into his world right now and be there for what he needs, not about what we need.

[Dramatic lyrical guitar music] LINDA: We're here.

[RV comes onto gravel road] CURRY: Hey, there he is.

What do you know.

JIM: Finally.

At last.

CURRY: Good to meet you.

JIM: How are you, Curry?

CURRY: You doing, okay?

JIM: I am now.

LINDA: Hello, my friend.

CURRY: How are you doing?

LINDA: Oh, God.

Are you real?

Is he real?

CURRY: Come on in and have a seat, bud.

It's good to see ya.

JIM: It's good to see you.

CURRY: You bet.

JIM: He looks just like on the Zoom.

[Laughter] CURRY: So how are ya doing?

JIM: Exhausted.

CURRY: Yeah.

Well, yeah, the road noise and everything going by you.

Oh, it just does ya in.

JIM: Yeah.

CURRY: It does me.

JIM: Does a neurologist... Do you still see a...?

CURRY: I haven't seen a neurologist in five years.

JIM: Uh-huh.

CURRY: Yeah.

My insurance was out, so they put me on indigent care, and we were really lucky to find my doctor.

With the right medicine, he really got my hallucinations leveled out.

I had my first symptoms and that was the first visual.

Uh...the first... But that was the first uh... The first...not mild hallucination.

JIM: Like, something aggressive?

CURRY: That that was the first...God, I use the word all the time.

I need to go smoke a cigarette now.

[Laughs] JIM: Okay.

Cigarette time.

CURRY: Yeah.

Come on out, Jim.

Come out and look at the chickens.

[Chickens clucking and crowing] JIM: Okay.

Who chases who around here?

CURRY: They all pretty much just play together.

JIM: Uh-huh CURRY: So, what trouble are you having?

JIM: Sometimes, I can't speak.

CURRY: Yeah.

LINDA: I want to say, I was impressed when they were talking earlier, and when Curry was struggling, you just sat quiet and didn't jump in.

I have a really hard time doing that.

And I was like, "How is she sitting there quiet, not jumping in?"

Because he was really struggling and you just... LINDA WHISENHUNT: Well, I try to just stay in the background and be there if he needs me, because he was a take-charge type of person.

LINDA: I'm so used to him being my protector and taking care of me.

And then, when he can't do the simplest of things, um, it just, it knocks you off your feet.

It just... LINDA W: Let me tell you what, the one thing that was hard for me was having to turn my feelings off because if he saw I was upset, then he didn't know how to handle it because he can no longer fix things like he used to.

LINDA: Yeah.

I will not let Jim see me cry about it.

I can't because he will... I think one time I was upset about something, and he started crying, and before this, I never saw him cry.

LINDA W: First time I saw Curry cry; I don't know if I can tell it.

[Voice breaking] Sitting in the doctor's office when we had no idea what was wrong, and he was having the problems.

And when he asked her, "Am I crazy?"

And she told him, "No."

He said, "I've got to be, because I can't remember anything, can't do anything."

And he just broke down crying.

And I just reached over and grabbed his hand and he just, [inhales sharply] "Now, doctor, tell me what I got to do."

LINDA: I don't know.

I don't know if I'm going to be strong enough when he needs me to be.

LINDA W: You will.

You will.

Well, I mean, we both have to be.

LINDA: Yeah.

[Crickets] [Guitar playing] [Fire crackling] LINDA: Play, like, a fire pit song.

[Curry chuckles] [Twangy guitar music plays] CURRY: Hey, Roxy.

[Cat meow] MANNY: So, how are you liking your trip so far?

JIM: Well, it's good.

Fast-paced.

MANNY: Are you looking forward to doing out west at all or... JIM: Yeah, I want to go somewhere where I can put my hands on a rattlesnake.

MANNY: You want to hold a rattlesnake for real?

[scoffs] JIM: That's right.

Yeah.

MANNY: Oh, my God.

LINDA: Welcome back, podcast family.

CURRY: Yes.

Welcome back y'all.

LINDA: Just a quick shout out from me to all of our listeners, and we now have people listening.

Curry, drum roll, 65 countries.

[Curry laughs] CURRY: 65.

LINDA: I'm happy to say that this is the first time I'm recording with you, Curry, sitting right next to you.

CURRY: Exactly.

It's just very, very powerful to finally meet you two.

I don't want to see any of y'all leave.

Come here, Jim.

I love you, buddy.

[RV driving down the gravel road] [Guitar music continues and fades out] [Cars driving by on highway] LINDA: So, we'll get to this campground around 7:30.

JIM: Can we not drive at night?

It's scary.

[Rumble of RV] LINDA: He's stressed out.

He doesn't want to travel in the dark.

From now on, we have to make sure we're only traveling in the daylight.

MANNY: Well...like, I could drive this, and you guys can fly and meet me wherever where I'm at.

It's going to be a whole lot more expensive but... LINDA: He's dying, Matt.

MANNY: Yeah, I know.

LINDA: I don't care.

MANNY: Yeah...no, I'm just... LINDA: Yeah, I know.

I can't even think about money right now.

And even if I didn't have the money, I'd put it on a credit card or something.

[Linda exhales sharply] CARLA: So, how are you feeling?

PATRICK: [indistinct words] CARLA: Did you get your nap out?

What you need?

PATRICK: Most of it.

Me.

CARLA: He started having more agitation.

PATRICK: But then, what is that?

PATRICK: Two... [indistinct words] CARLA: Hmmm, mmm.

PATRICK: Now, can I?

CARLA: Can you what?

PATRICK: Can we go ahead and... I'm tired.

CARLA: Okay.

PATRICK: I don't like that.

CARLA: Okay, come on.

Let's go to the back.

Come on.

Turn around.

Come on.

[Soft footsteps] PATRICK: Are you going to be up there with me?

CARLA: Yeah.

PATRICK: Okay.

[Slow poignant music] CARLA: Last time we tried to take a walk, he couldn't do it.

We are now confined here in the home.

PATRICK: Oh.

CARLA: Okay.

I'll cover you back up again.

I never thought in a million years, this is the stage that I would be in at 60 and him 66.

[Door opens] CARLA: He being the proud man he is.

He definitely would've never chosen this... for either one of us.

[Wind blowing] [Soft sobs] [Birds chirping] LINDA: Here's your meds.

You got to start eating more because you're losing weight.

[Jim laughs] LINDA: What?

Don't choke.

What's the matter?

JIM: I don't know.

[Jim continues to laugh] JIM: Wouldn't that be something if the only side effect from this disease makes you laugh?

LINDA: Yeah.

It's better than crying.

You haven't done that before.

JIM: Yeah.

LINDA: I'll get your DVD going.

[Footsteps to back of RV] LINDA: It'll distract you from the driving.

[Shuffling on bed] JIM: I'm scared.

LINDA: You're scared?

JIM: Yeah.

LINDA: Well, you just went from a high to a low, huh?

Hey, tell me why you're crying.

Mm?

JIM: I want to go home.

LINDA: Don't cry.

JIM: [Voice breaking] I don't know what's going on.

LINDA: I know, you don't know what's going on.

[Melancholy piano music] You okay?

[Linda lets out a sigh] LINDA: I just...I think he's... I don't know, Matt.

I think we need to go home.

CARLA: Hey, girl.

LINDA: Hey.

We're not going to be able to make it to Sacramento to see you, because being in the RV is just too hard for Jim.

CARLA: I am so sorry.

[Music fades out] [Car driving by] [Birds chirping] LINDA: We decided to move to New Orleans to be closer to our oldest son.

Because of his night terrors, I made the decision to just sleep in another room.

There's no conversation really.

[Door opens] LINDA: Here, take this medicine.

JIM: What happened to the blue?

LINDA: Right there.

LINDA: It's very lonely.

[Jim picking up guitar] LINDA: Want me to help you?

Volume.

Volume's down.

Try again.

Where's that cord going to?

Let me see.

[Cord snapped into amp] LINDA: All right.

Try it now.

Good?

[Dissonant sounds from guitar] [Jim tuning guitar] Sounds good, Hun.

[Dissonant sounds from guitar] JIM: I'm gonna... I got to walk here.

LINDA: That's a hard one, huh?

Jeez.

[sniffles] LINDA: This is the first time ever he hasn't been able to play.

It was just heart-wrenching to watch.

JAX BROWN: The cascade of losses that keep coming, it's just very difficult.

CARLA: You know, our friends and family, they look at us, "Oh, they're so strong.

They're doing this and they're doing that."

And sometimes, I just feel like I'm crumbling inside.

LINDA: I talked to my kids a couple of weeks ago and they always said, I was super mom with a cape, and I'm like, I'm pretty sure the cape has been lost.

I don't think I can keep doing this 24/7... I'm not as strong as some of the women in the group.

I feel selfish saying this, but I need to be able to get out of here.

CARLA: I finally got a paid caregiver that comes in once a week.

That really has been a big help.

WENDY COGAN: Can you get here three or four days and just Manny, or your kids, take you know, a day each or split shifts?

JAX: Yeah, yeah.

WENDY: Yeah.

[Upbeat guitar music] [Plane landing] [Car drives by] WENDY: Hi.

LINDA: Hello, ladies.

WENDY: Welcome.

[Women cross talk] JAX: How are you?

LINDA: How are you?

JAX: Oh, my God, girl.

WENDY: How are you?

JAX: Look at you.

We finally meet.

WENDY: Welcome.

LINDA: All right, girls.

WENDY: Hoorah.

CARLA: So, what are we toasting to, ladies?

[Glasses clink] LINDA: Cheers.

CARLA: To the sisterhood.

LINDA: Sisterhood, honey.

CARLA: Girls' trip, cheaper than therapy.

Okay?

[Laughter] LINDA: Take another sip because I would like you to share with us in person the story you shared on Zoom.

Go ahead.

Do it.

I can't wait to see it.

CARLA: So, one day, we sit down and we're watching this "Cougar Town."

Well, this 60-year-old cougar walks up to the 40-year-old cougar and said, "If you're going to be a cougar, you need to take some yoga classes."

She walks up to the guy at the club, throws her ankle up on the shoulder with no problem.

Patrick looks at me and says, "You've been doing yoga.

What can you do?"

[Laughter] CARLA: I said, "I'm sure I can get to your shoulder with you sitting right there on the bed."

I went whack.

WENDY: Oh, no.

CARLA: I knocked the daylight.

He went back... Bam.

[Laughter] CARLA: "I told you.

I told you."

His eyeball was rolling.

He hit the back of the bed.

LINDA: Here, honey.

You do deserve this.

CARLA: Yeah, yeah.

LINDA: You deserve a couple of those.

CARLA: Okay.

LINDA: That was good.

Thank you.

CARLA: Oh, my goodness.

JAX: Cheers.

LINDA: Thank you for that entertainment.

CARLA: Oh, my goodness.

LINDA: Oh, God.

I miss being this person.

I haven't been this person in quite a long time.

CARLA: Hmm-hmm.

[Upbeat music] CARLA: I thought about playing charades about what we've communicated in the past couple of days.

What you guys got?

LINDA: Well, we did this.

[Laughter] [Pool ball slamming] [Hands slapping five] CARLA: Linda.

Oh, my God.

You're crazy.

LINDA: Let's go.

One, two, three.

[Playful scream] [Water splashing] WENDY: Oh, my God.

Whoo!

That is awesome.

CARLA: I can't even imagine going through this without you guys.

LINDA: I'm taking you home with me, I'm just saying.

[Laughter] LINDA: I'll borrow a big suitcase and you're going to be... JAX: Oh, my goodness.

CARLA: I'm just hoping that I can take this energy home with me because you feel like you're in a boxing ring and say, "Okay, come on.

I got this.

I can carry him through this."

And then, you see another thing, it's like, bam.

You know?

And it kind of knocks you down.

You got to get back up.

Okay.

And now, Patrick's awake time is shrinking.

So, I realize this is progressing.

Oh, my God.

Um... WENDY: I have to think in my mind, I'm like, "Is this really true?"

'Cause I can't believe other people have ever made it through this.

Every day there's new grief.

CARLA: Yeah.

Every day.

JAX: Yeah.

WENDY: Every day.

LINDA: And it is just hitting me that I'm going back to that tomorrow.

I'm going back to the reality.

[Voice breaks] And what if I'm not strong enough to do it?

WENDY: Got to walk over the coals to get to the other side, unfortunately, and we're like right in the middle of the coals.

JAX: We're right under the fire right now is under our feet.

LINDA: Yeah.

I'm just, I'm suffocating.

He would be there for me and would never be like this.

And the thought of going home... [Sniffling] This is how I feel when I walk in my house, I feel like I can't even breathe.

[Linda gasping for air] CARLA: Something my mama always said, "This too shall pass."

[Voice breaking] WENDY/JAX: Mmm-hmmm.

[Linda sobbing] CARLA: [whispering] Take a deep breath.

We got you.

Breathe.

[Gentle soft music] [Sound of ocean waves lapping gently] [Crickets] LINDA: You ready to get ready for bed?

JIM: Yeah.

LINDA: Yeah.

Get comfortable.

Do you want the music on?

JIM: Yeah.

LINDA: Good night.

I love you, honey.

I'll see you in the morning.

[Light switch turned off] LINDA: You know, I've been wanting to have family meetings to talk about the situation with your dad.

ANDREW SZYPULA: We had a meeting with a home care provider.

We just have to figure out what the costs are and you know, what all of that entails and then kind of start that process so that mom can claim some of her life back.

MATT SZYPULA: [voice on video call] Okay.

LINDA: But we don't know how Dad's going to react if strangers are coming in the house.

So, what's the thoughts on how we're going to tell Dad?

Because that's my worry.

Can you guys talk to him about that without me there?

ANDREW: Mmm-hmmm.

Yeah.

LINDA: Not something I expected us to have to do so soon, but... ANDREW: Mmm-hmm.

MATT: [voice on video call] It's just the next step.

ANDREW: Yes.

SARAH SZYPULA: Hmm-hmm.

CARLA: Hello?

PJ [on phone]: Hey, I was just kind of checking in on the stress levels and everything with the ceremony coming up.

CARLA: Baby, when I tell you, he's been upbeat and talking.

So yeah, my stress level, there is none.

PATRICK: Hey, man, what you doing?

PJ: [on phone] Hey, Dad, you staying out of trouble?

PATRICK: Nah.

[Laughter] PJ: [on phone] Bye, Dad, and I'll see you online tomorrow.

PATRICK: Bye-bye.

PJ: [on phone] Bye, Dad.

[Lyrical, uplifting music] CARLA: Hey, baby.

I'm getting ready to walk outside with you.

Do I look okay?

PATRICK: Yeah.

CARLA: You ready?

BISHOP PARNELL LOVELACE JR: We are here to renew the vows of this precious couple: Patrick, our brother, and my sister, Carla.

You have demonstrated and continue to demonstrate that love indeed is patient.

It's kind and it's long-suffering.

So, God bless you.

We thank God for you.

CARLA: Amen.

BISHOP PARNELL LOVELACE JR: Amen.

CARLA: Can I get a kiss?

PATRICK: Oh.

[Kiss] [Soft claps] BISHOP PARNELL LOVELACE JR: Ladies and gentlemen, I present to you once again Mr.

and Mrs.

Patrick Preyer.

[Wild clapping and enthusiastic shouts from wedding video] PERSON FILMING: How do you feel?

You feel pretty good?

PATRICK: I feel very good.

PERSON FILMING: Good.

Good, good.

[Birds chirping] LINDA: Jim took a big decline.

He started taking several naps a day, and then he came out to the living room, and he said, "There's something wrong because I'm still here.

Why am I still here?"

And it made me concerned.

So, I called the kids and asked them to come home.

[Melancholy music] LINDA: Over those nine days, I videotaped as much as I could.

I really did feel like I was having an out-of-body experience.

I don't think my brain was allowing me to comprehend that it was the end.

Lewy bodies just took over and took him [snaps fingers] just like that.

[Wind through trees] MANNY: I met Jim on Morey's Pier.

I often apologized to him for bringing Linda there that summer.

And for him getting stuck with her, I mean uh, marrying her.

However, Jim in his usual humor came up to me and hugged me and he said, "Thank you," because Linda and their children were the best part of his life.

[Soft lyrical music] CARLA: My prayer was, and I asked Patrick, "please don't leave without me being present."

And I am so thankful that I was there holding his hand.

BISHOP PARNELL LOVELACE JR: We have come to celebrate the life of our beloved, dear brother, brother Patrick Freeman Preyer.

Can we give God praise for his life today?

[Clapping] BISHOP PARNELL LOVELACE JR: We are not doing a funeral.

CARLA: Praise the Lord.

BISHOP PARNELL LOVELACE JR: I got to celebrate him today.

To all of the family, we're holding you all up in prayer.

And to my sister Carla, we thank God for you.

Well done.

Well done.

Well done.

[Applause] BISHOP PARNELL LOVELACE JR: Well done.

MANNY: Hey Jim, live on in all our hearts and minds forever.

So, no more tears.

Let the celebration begin.

[Clapping] [Band plays "When the Saints Go Marching In"] [Sound of ocean waves] [Sound of people screaming on rides at amusement park] LINDA: That place where I caught his eye is over there.

[Ocean waves lapping] CARLA: This water feels really good.

LINDA: Have you ever been in the Atlantic Ocean?

CARLA: Not in the Atlantic Ocean, no.

LINDA: You like it?

CARLA: I love it.

I'm happy to be here.

[Somber, but uplifting music] LINDA: So, what do you want to do now?

CARLA: I really, really want to work with caregivers.

Self-care for the caregiver.

LINDA: Yeah.

I feel like, clearly going to keep doing the podcast with Curry, as long as he can do it.

CARLA: We have a lot of resources now, and that we can just share with folks coming.

LINDA: I think for me, it's... Because there's been some people that just walked away from... [Somber music fades out] CARLA: How many of you has been touched by any type of dementia?

My God, that's over half the room and unfortunately, the numbers are growing.

[Lyrical guitar music] LINDA: Welcome, Dr.

Cohen, and thank you for agreeing to come on the podcast and answer some of our burning questions.

Curry and I, along with our listeners and supporters, have been trying to raise awareness now for almost three years.

DR.

JASON COHEN: I think the awareness is a really big piece, and no one's going to want to fund a research study for a disease you've never heard of.

CURRY: Doctor, can you tell us what's new in the diagnosis and treatment of Lewy body dementia?

DR.

COHEN: There's certainly progress, progress on a lot of the diagnostics.

There is a skin biopsy that's made a difference.

Momentum's building.

We got a lot to go, but we're making progress.

CARLA: Studies have shown over 30 percent of caregivers die before their loved ones.

So, my goal is to help you find peace in the process of caregiving.

Difficult, but possible.

Many of us don't know how to ask for help.

I'll raise both my hands.

Seek help.

Do not do this alone.

[Music continues] The Chang Yung-fa Foundation Maplewood Senior Living and its Inspir Communities... And these supporters...