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- [Donnie] Hi!

(laughs) - [Gloria] Suzie.

Are we getting our pictures or what?

- [Kitty] I got you, Mom.

- [Gloria] Okay.

Got Donnie?

- [Kitty] Yep.

- [Gloria] Okay.

(Donnie laughing) - [Kitty] And I got Dad looking perplexed.

- [Gloria] We don't wanna be forgotten, do we?

- [Donnie] No.

- [Gary] I got 38... (gentle music) - [Kitty] This much you do know.

Nobody wants to be a dementia family caregiver when they grow up.

My sister and I spent the last five years helping our mother to the end of her life.

And while Mom was busy forgetting all of what she knew, we learned about heartbreak, perseverance, devotion, devastation, and the hilarity that comes when you are forced to accept the unacceptable.

(calm music) We're talking about what it's like to be a dementia family caregiver.

There's so much you don't know.

So this is my journey to bring you the stories of dementia family caregivers.

(calm music continues) (calm music continues) We got stuck with a disease that hardly has any information about it, and the information that is out there is so hard to find.

So we do our best to figure it out.

(RV engine rumbling) (text scratching) (glasses clink) All right, Mom, you can start any time.

- My name is Gloria, and I'm married to Gary.

The first time I noticed him, I was on the bus which his mother was driving.

She was a school bus driver.

And we went down this one street, and I saw this really tall, red-haired young man, and I didn't even know his name.

And somebody said, "Well, that's da-da-da-da-da," and she's- - [Kitty] There, right there.

That is the exact moment I realized our lives were about to change.

I was interviewing my parents for their 50th wedding anniversary.

50 years, and Mom could not come up with Dad's name.

- It's all related some way or another.

But that's first time I saw him, probably, what, two or three weeks after school started, 'cause I don't remember.

(gentle music) ♪ Ah, ah, ah, ah, ah ♪ - Anyway.

- [Kitty] Dad was in denial for a very long time about Mom, probably about a good two years, and he just kept saying, "I don't think she has dementia.

I think she's just drunk."

And the thing was, he wasn't completely wrong because Mom would forget that she already had two glasses of wine, but he wasn't really paying attention to the big picture.

The real issue is her brain is doing very different things.

- My mom forgot my birthday.

I think I called her eventually, and I was like, "Did you mean to call me today?"

And I think she was like, "No, was I supposed to?"

You know, like, I was like, "Well, it's kind of my birthday."

(laughs) Oh, my gosh, yeah, but my mom was kind of ditzy, and so to me, none of that was out of the ordinary.

- [Kitty] Dad vowed to keep his sweetheart at home, and my sister and I believed him because he's that kind of man.

(gentle music) As it turns out, he's also the kind of man to die of pancreatic cancer.

Suddenly.

(gentle music) (whimsical music) - [Lexie] We had enough talks when Dad was still alive that we knew that we were gonna do this.

[Kitty] We both knew we had to figure it out.

We can't do this without each other.

[Lexie] We made the promise to him that we were going to keep Mom in the house as long as we could and take care of her.

We both knew what was coming.

- (gasps) Oh!

- I just don't think we knew how to navigate that.

(upbeat music) I think our sense of humor added to our survival skills.

(Kitty blowing raspberry) - Shh!

- You starting this blog, like, talking about the weird, funny (beep) that comes with dementia.

- [Dylan] Getcher' candle.

Make a wish!

- Boom!

(Kitty and Dylan laughing) - [Kitty] I started the Stumped Town Dementia blog for a lot of different reasons.

I needed a creative outlet, and I wanted to keep friends and family updated.

But it also opened up a whole new world of virtual friends, other dementia caregivers who became my touchstones, my lifelines.

(magical music) - Well, I read her blog, like everybody, right?

I read her blog, and I thought, "What is this?

What, wait, what is this?"

- And you know, started watching her videos.

(upbeat music) - She had one post in particular that really hit home with me.

(calm music) - What Lickety has done with her blog is she has said, "Let's talk about the (beep).

Let's talk about what's really going on, and let's have family care partners see that I'm not the only one, and I can own that this is really (beep) hard."

- We've never met in real life, but I consider Lickety a friend.

A bonus is that she strikes me as very fun.

(whimsical music) - [Kitty] For about the last year of Mom's life, I was like, "Oh, wouldn't it be so much fun to just like get a house on wheels and roll around the country and meet these people?"

And five of them in particular that were so important to me, but then just any of 'em, because with every email, every comment on the blog, they made me feel so much better.

And I just wanna come by and give you a smile and a hug, and maybe we can chuckle about the crazy (beep) that drives us insane.

(Beth laughing) (whimsical music continues) This is the first time I've done anything of this nature.

I've dumped the black water and the gray water, so I had a practice run at that.

(whimsical music continues) The Gloria is what I've named the RV, in honor of Mother and also because it's old, it's a little smelly.

It's cranky, and it has a little trouble on the road, all attributes Mom had.

(whimsical music continues) I wanted to maybe distract myself from Mom's death.

I think I'm so okay and so fine.

I do need a little healing or maybe a lot of healing.

(whimsical music continues) (drill whirring) (hammer clanking) (ratchet creaking) (whimsical music continues) They said it was for Fords.

- This is transmission fluid.

- Oh (beep).

- It's a really good thing we didn't put there.

- Yeah.

- Yeah, when you see that pink color, that's a good sign that it's gonna be- (Beth laughing) It's gonna go in a different hole.

- Thank God you stopped me.

Well, we're just gonna have to make some friends on the road, you know?

- [Wyatt] (laughs) Two ladies, one RV.

(upbeat country music) - [Kitty] Did you check the fresh water?

- [Beth] Where's the fresh water?

- [Kitty] Nevermind.

- [Beth] Where's the dog?

(upbeat country music continues) Open road!

Here we are.

- [Kitty] I'm so grateful that you came up from California to do this with me.

- [Beth] Yeah.

- [Kitty] That means a lot to me, Beth.

- [Beth] Well, let's see if we're still friends when we finish this road trip.

- [Kitty] Oh, I say let's see if we're still friends by the time we finish today.

(Beth laughs) (upbeat country music continues) (horn honks) (RV engine rumbling) (sign pops) 26 days, 27 states, 7,500 miles, here we go!

(upbeat country music continues) (bell clangs) (peach pops) (lasso whooshing) (ocean waves) (radio announcer chattering faintly) (calm music) (calm music continues) (screen whooshes) - My name is Allyson Schrier, and my husband is Evan Schrier.

He was 47 when he was diagnosed with something called frontotemporal dementia.

It took about six years for us to get Evan's diagnosis, so six years of going to doctors and neurologists and therapists.

And he had been, anyway, he had been diagnosed with adult-onset ADD, so we kind of ran with that.

(clapperboard clicks) - (laughs) My name is Grace.

My mom is Joanne, and my dad is Timothy, and my mom has Alzheimer's.

My dad's father had Alzheimer's as well, and I know it was really tough on him to watch that happen.

So I think when my mom got the official Alzheimer's diagnosis, it was truly his worst fear come true.

- I am Lindsay Perrin.

My dad is Steve Brown, and he lives here with us in Amherst.

- My name's Matt Perrin.

My Mom is Rosemary Perrin, 75 years old and living with Alzheimer's disease.

- His symptoms and the discussion was always around Parkinsonisms.

They found evidence that led us in the direction of Lewy body dementia.

(clapperboard clunks) - [Videographer] There it is, beautiful.

- That's fun.

- Alright.

- My name is Rosanne Corcoran.

My mom's name is Rose Carfagno.

She had evolving dementia.

My mother is one of 12, and eight of them had some sort of cognitive issues.

(clapperboard clicks) - My name is Veronica Shanklin.

My mother is Linda Shanklin, and she has Alzheimer's.

And my grandmother is Vernell Shorter, and she also had Alzheimer's.

We've had a lot of dementia in my family.

My grandmother's husband passed away from dementia.

She was his caregiver.

My grandmother's mother, who was my great-grandmother, also had dementia, and my grandmother was her caregiver.

And so we've seen it a lot in the family, but I don't know if there was ever any formal education.

Like, the things that I know now about the disease that I've gotten from research and trainings and classes, I don't think my family really ever got that formal training so that even when symptoms start to show, I don't know that it's recognized as such.

- My mom got lost driving one day, and I actually heard about this secondhand.

She didn't call me.

You know, she was lost in streets that she had been driving.

I mean, my mom was not just a nurse.

She was a visiting nurse for the last 20 years of her career on Cape Cod.

She knew every inch of of Cape Cod like the back of her hand.

So that really gave me pause to hear that she had gotten lost.

- I'm noticing that my mom, she's struggling at work, and she's also struggling with the bills at home.

So she has mail all over her bed, strawn out all over her bed.

And I'm like, "How are you even functioning?"

Like, "What is the system here?"

You know, and she claimed to have some sort of system working.

In hindsight, I realized, you know, that was probably a sign, but at the time, I was just like, "She's just disorganized," you know.

- I definitely, I was the last of my siblings to identify that, or maybe more so accept that something was off.

I always kind of chalked it up to aging, or you know, "Mom's never been good with dates."

And those were the things that were easier to explain away for me.

(solemn music) (solemn music continues) - I know what it is to be losing somebody incrementally.

I know what it is to kind of be hoping that it's over sooner rather than later.

In my journey with my mother's Alzheimer's, she's in a facility in Portland and can barely speak.

It was so hard for me because I took care of my grandmother, and I honestly didn't have the strength and just couldn't do it for my mother.

I just couldn't handle the fact that this woman, this really intelligent, beautiful woman who at the age of 64 was talking gibberish.

I just was dissolving in tears.

(calm music) (RV engine rumbling) - All the sudden, your life has completely changed.

Neither one of us really had time to process anything.

It was just learn, learn, learn as fast as possible, tiptoe around each other, 'cause we were just still very raw from a very big falling-out we'd had about six years prior.

And we had just started coming together the last two years, and now we were thrown together in the same house trying to figure out my mom.

(bright music) - [Veronica] Sometimes, you know, it's a very lonely road, and sometimes I have a few people around to help.

It just depends on a snapshot of that time.

It's typically only me.

- I mean, we went through this together at the same time and loads of time felt isolated.

(chuckles) - And it was just infuriating to me because I was looking for somebody to help, and there just wasn't anybody.

(bright music) (fingers snapping) (RV engine rumbling) - [Allyson] Hello, friend I've never met!

Oh, Mr. Bones is excited, too!

Oh, my god, hi!

Hello, you, wait, ooh!

- Hi.

(laughing) - Oh, my god, I can't believe you're actually really here in person.

This is my house!

[Kitty] Let's get some food and some wine.

- [Allyson] I can't wait.

(laughs) (bright music) (jazzy music) (graphics popping) Grace!

- [Grace] (laughing) Hi.

- Hi, buddy!

- Oh my god, you look beautiful.

- It's nice to meet you.

- Thank you!

- Nice to have you.

- Thank you for hosting us.

(jazzy music) (graphics popping) Oh, my gosh, yeah, thank you!

- Hi.

- Nice to meet you.

- I know!

Nice to meet you, too.

Hi, Matt.

- Hi.

- Thanks for the hello.

Look at this.

- Every time I get gas, I look at Mom.

- [Matt] Yeah, it's awesome.

(jazzy music) (RV engine rumbling) - It's fantastic.

(bell clangs) - [Kitty] Where is that lady?

- Come on, come on.

Hey!

- (laughing) Hello!

- [Rosanne] Hi!

(RV engine rumbling) (mellow music) (graphic pops) (Nicolette laughing) - [Kitty] Nice to be here...I'm so happy to be here.

- I have so much wine and cheap champagne and chocolate cake for you.

- [Kitty] I'm having the best time, but it's also been a little stressful.

- Little stress.

(both laughing) (upbeat country music) - [Veronica] Welcome to Texas!

Oh!

- I wanna give you this.

- Thank you!

- My sister and I always drink our wine out of- - Mugs.

- coffee cups because we didn't wanna walk upstairs and get real wine glasses and wake Mom up.

(laughs) - (laughs) Totally makes sense, I totally get it, 'cause I tiptoe around here all the time.

- Yeah.

- Yes.

(calm guitar music) - [Matt] Steve, this is Kitty.

- [Kitty] I'm pretty sure my mom's here with us, too.

- Yes.

- Mm-hmm.

- That's right.

- [Kitty] And she's probably saying, "Run, Steve."

(Lindsay and Matt laughing) The five of you that I've come to visit, somehow we've come together knowing that we had to laugh about this stuff.

And not only did we have to laugh, we were kind of already built to laugh.

It's hard to say because however someone's getting through dementia is if it's working for you, don't change it, keep doing it.

All I wanted people to know when I wrote was that if it's not working for you, if you're watching all the sad, sad movies, if you're reading all the sad, sad books, then you might change your perspective a little bit about it.

- [Veronica] This is a long journey.

- Yeah, Lexie and I were talking about stuff, and especially before I started writing, I'm like, "Oh, that's right!

I totally forgot about that."

Like, "That was really funny."

Or "Oh, that was really sad," or I'd forgotten, and that really upset me, you know?

- Right, right, 'cause you've moved on to the next thing, 'cause it's all so crazy.

You moved on to the next thing that upset you and you're like, "Why did that upset me?"

- Right, mm-hmm.

- And this got so much worse.

- Mm-hmm.

(Kitty laughing) (bright music) (person whistling) (RV engine rumbling) (truck engine rumbling) (bright music continues) (person whistling) - [Beth] RV living!

- Ain't it grand?

(bright music continues) (person whistling) [Kitty] You know, when you make the decision to get an RV, you kinda have to cowgirl up and say, "Wow, there's gonna be some (beep) I don't wanna do."

Oh (beep)!

Oh, god!

And I'm just gonna have to do it.

- We're like our own water and power department, and we suck at it.

(laughs) - Okay.

- Whoo!

- Yeah, we're good.

(bright music continues) (person whistling) [Kitty] So I brought a piece of Mom and Dad with me.

This is Mom's iconic green coat.

For those of you who are already Stumped Town Dementia readers, you know she's wearing it in about every picture, 'cause she was always freezing.

And then I brought Dad's cowboy hat.

Not kind of a cowboy hat girl, but I guess I could be a cowboy hat girl today.

(laughs) (bright music continues) (person whistling) One of the reasons you and I connected was because both of us were working through this dementia, and we had rejected the continuous tragedy narrative.

Not to say that we don't believe that there's tragedy in dementia, 'cause there is, but we found that we couldn't live in that world.

And I kind a wanted to hear what the impetus was for you to say, "I can't live like this 24/7."

- Sure, within a few days of having gotten the diagnosis, I got a phone call from a woman who found out about me through the social worker at the doctor's office, and the thing that we had in common is that our husbands had the same form of dementia.

And like me, she had children.

She started off by saying, "I just want you to know that you're in for a real (beep) show," and then she went on to tell me her horrible tragedy story, and it was just day after day of abject misery.

And I got off the phone, and I just thought, "Okay, I'm not gonna do that.

I'm just, I'm not going to allow my family to plummet to the depths that she described."

But at the same time, I'm kind of grateful for that call, 'cause that call was the thing that really caused me to kind of jump into action and to really think about how do I not have that be my narrative.

The first thing that I did within days, honestly, of getting the diagnosis- - This one is the- - is I wrote an email that I sent to - There's Evan - everybody I knew, and I even went through Evan's, combed Evan's email and found the people who he had worked with at his previous job that he had lost a few years earlier and then the job that he had lost most recently, because what I knew is that for a long time, I thought he was just a jerk, right?

Like, I thought, "Wow, my husband's turning into, he's turning into this sort of like narcissistic, self-centered person."

And what I realized is that I wasn't the only one who felt that way about him.

The people who he was working with had lost all respect for him.

It was really important to me to kind of clear his good name and on one hand, to clear his good name, to let everybody know- - And then you're like, "Good news, it's dementia!"

(both laughing) - Yeah, right?

I know.

"He's not an (beep)!"

Yeah.

- "Well, okay, he still is."

- Sometimes.

- "But there's a reason."

(Kitty laughing) - Right.

(laughs) Then at the core, right, he's still this amazing, sweet guy, just sort of like wrapped in an (beep) hole.

(Kitty laughing) But anyway, so I sent out that email, and I also at the same time was soliciting for help.

So I told people what was going on.

I told them as much as I knew about where we were going, 'cause frankly at the time, I didn't have much sense of where we were going, but I knew that I would really benefit from having some people who were on our side.

And what I found, amazingly, is that there were these outliers, like, people who I would never in a million years have thought would be the people that would come to our aid, and there they were.

- Wow!

- So I know a lot of people are really hesitant to admit that they have dementia.

You know, it's kind of like 50 years ago when people would be like, "Bob has cancer."

(Kitty laughing) Right?

The C-word.

And I think that people are still that way in many respects with- - Chlamydia.

(both laughing) - Poor Bob.

(laughing) - [Allyson] Poor Bob.

- "Good news!

It's dementia!"

(both laughing) - Some of the stuff that people with dementia do is hysterically funny, while at the same time, it is horribly sad, but we need to be able to find the funny side because there is one.

- There was a day when she was, oh, she was just mad.

I didn't know if she knew it was me or if she was just mad at this person that was coming in, but she was pissed off, and I was like, "Oh!"

And I never knew what to do with that because it was so not her character.

- [Kitty] Yeah.

- And there was just nothing I could do.

And I thought, "I'm gonna try this."

So I was like, "Hmm."

I left.

I went into my room, changed my shirt.

I went back in, and I was like, "Hey, how you doing?"

She was like, "Oh, where have you been?"

I thought, "Thank God!"

(Kitty laughing) (upbeat music) - I think it was the time it was her and Lexie walked through Nordstrom's, and the lotion gal stuck a little bit of lotion on Lexie's hand.

She's like, "Oh, yes, it smells very nice."

And then she did it to Mom, and Mom went.

(all laughing) It was like- - Oh, to be the lady at Nordstrom.

- I know!

Mom didn't care.

And Lexie was laughing, and the woman was just.

- Did it taste like it was worth 50 bucks?

- I don't know.

I wasn't there.

But I did tell Lexie afterwards, "If they have that lotion in chocolate, we'll take a case."

(all laughing) - Aside from losing your memory, I had no idea all these behavior changes like, were part of this.

Like, there's so much more to dementia than they tell you in the movies.

(laughs) So I had a lot to learn.

- For the first time ever, my mom walked out.

I was exhausted, so I'm sitting in a recliner chair, half asleep watching TV, football.

She's bored, and I realize, and I think a lot of us realize if I would just get up and give her an activity, that might occupy her for a minute, she's bored!

She gets up, she comes outside, and I'm like, "I haven't seen her walk past the window lately.

Let me go check and see what, where she is, what she's doing."

I come up, come outside, nowhere to be found.

So I opened the back gate, and she's walking up the street, and she's like, "Yoo-hoo!"

(Kitty laughing) And you know, I was like, I probably had steam coming outta my ears, but I wanted to curse.

I can't curse because, for what?

- Yeah.

- It doesn't matter.

- Right.

- 'Cause she's so, just like, "Oh, yeah, hi!"

- She's having a good time!

This is like the most autonomy she's probably had in a long time and- - Oh, yeah, she was- - "Just going for a walk.

What's the problem?

What's wrong with you?

Why are you such?"

I mean... (Veronica laughing) Well, go to bed.

It's nighttime.

- [Gloria] Huh?

- [Kitty] What you putting your shoes on for?

You gonna go jogging?

- No.

- [Kitty] You know, it's 11:30.

- Is it?

- [Kitty] It is!

(laughing) - How is that?

- [Kitty] It just happens.

Every minute goes by, and it gets later and later.

- Hmm.

- [Kitty] It's dark out.

That means it's bedtime.

- I don't wanna do that.

- [Kitty] Okay, then.

(laughing) What do you wanna do?

- I don't know.

- [Kitty] (laughs) Well, do you expect me to do it, too?

- Yeah.

- Well, no.

(laughs) I don't want to.

- I thought it was a good time.

- [Kitty] (laughing) I want to go to bed.

- I see that.

- [Kitty] You know I love you, right?

- [Gloria] Yeah.

- [Kitty] But I'm still not gonna get up and play with ya.

- [Gloria] Ha!

Okay.

- So Rosanne, in the last five years, how much sleep have you gotten?

(both laughing) Because your mother did not sleep!

- No, no, she did not.

36 to 72, every, once a month.

Yep, yes, she would.

(chimes tinkling) - We got Mom that mirtazapine.

That was the first pill we added to her regimen, and it worked great.

Like, we would have maybe one night a month that she would be awake.

So your Mom tries it, and... - Like Chiclets, it didn't matter.

(laughs) It didn't matter.

It didn't work.

It wasn't, because it was supposed to be the twofer pill, right?

Increase appetite and help sleep.

- Oh, yeah.

- Did neither.

It did neither.

(gentle music) - Last summer is when she was off her medication, and that was a whole adventure.

(Kitty laughing) - [Joanne] I just don't see how this is healthy and happy for you to decide what I'm supposed to put in my mouth.

- [Grace] Oh, I'm not deciding.

It's from the doctors.

The medicine is to help you be happy.

- [Kitty] And your dad was getting what response?

- Oh, she was pissed!

- What was his success rate?

- [Ashley] She was taking the pills and hiding them from him and things like that.

- She was.

I found some in her coat pockets.

We found 'em, oh, she was taking the bottle, she would- - Drawers, dresser drawers.

- She would- - Dump 'em.

- Dump 'em in the trash, sometimes in the toilet.

He didn't wanna upset her, so he stopped trying.

- I'll listen to Dr. Kathol, but I'm not gonna listen to anybody else, 'cause I trust him.

- [Grace] Mm-hmm, well, he can't come here every day and give you the pills.

That's what the prescription's for, so those are the- - Yeah, okay.

- the medicines he says to take.

- Okay, we're getting to the point now where I'm gonna get up and walk away.

- We started to talk about some of the tricks.

"Let's put it in her yogurt.

Let's put it in her coffee," which is what we've ended up doing, but took months- - Or you would call.

- before he would try it.

- Or you would call or Ben would call, and you would take medication- - We'd take pills together.

- Your medicine together on the phone, on a FaceTime call.

- Which I always thought was genius.

- It worked for a while!

- It was awesome, yeah.

- [Ashley] Grace called 'em pill parties.

(wondrous music) (gentle music) - He doesn't speak much, you know, these days.

And once in a while you'll get the, "Hey sweetie," you know, and you're like, "Oh, my gosh, Dad!"

- Oh, man!

- You know?

I don't know when it's coming or when it's not.

I obviously don't expect it, and it's fine.

But when he responds, there's something inside of you that's like, "Yay," you know?

- Yeah!

- "I got it!

I got it.

He saw me," you know?

So at least for now, that's enough.

- Nobody understands the depth of that exhaustion and the grief and the guilt and the stew that is caregiving.

Nobody gets it until they're in it, unfortunately.

And I think that's why people don't pay a lot of attention to it because it's like, "Well, you're taking care of your mother.

How hard is that?"

(fire whooshes) (flames crackling) - [Veronica] And you say you have those days where you're not the best caregiver, where I'm like laying in the bed all morning, like, "I gotta go get her up.

I gotta go get her up, changed, dressed.

(sighs) Okay, I'm gonna get up."

And then we have like, you know, all of the things that come with dementia and bowel issues, you know, and constipation and all that stuff.

- Where's all the poop coming from?

- Right, or not.

- Oh, we didn't have that problem.

We had- - The opposite.

- More than we knew what to do with.

- No, we had not, and it's like, then you're dealing with someone who can't communicate.

- [Kitty] Yeah.

- So it's like, "You gotta be uncomfortable.

You gotta be in pain," and then you, it's just like a snowball effect, 'cause I'm like, "Okay, I've think I figured out baked beans help this situation."

- We did baked beans, too!

- But then I'm like, "I'm gonna go to this barbecue spot, get her some baked beans."

You know, I'm already stressed out, and I'm actually gonna go get these baked beans from this barbecue spot.

Get there, it's closed, you know.

And it's, you know, like those days where it's just like- - Everything just goes wrong.

- One thing after another.

I remember sitting in my car, and I was like, "I wonder how long it would take me to drive to Mexico."

(Kitty laughing) I understand why people just get in the car and drive away, zero.

- Yeah.

(laughing) Why are you up so early?

But I would be so tired some days I'd think, "You know what?

She's got her medical bracelet on."

(both laughing) "If she gets out, somebody's gonna find her.

They'll call the police."

(Veronica laughing) "I figure I got 'til maybe four in the afternoon before-" - This is a real conversation right here.

(clicks tongue) This right here is a real conversation.

- My mom still has this sort of defiant, independent thread to her that really at times can be very, very frustrating, and it's her disease.

It's not her.

I understand that.

I've gotten a lot better as time has gone on about, you know, getting myself into the right frame of mind, knowing that that is gonna happen when I'm with her.

And you know, it's her world, and I'm living in it.

(lively orchestral music) - [Kitty] Mom went ape (beep), just angry, violent, yelling, shaking things.

She was destroying the house, literally.

She tore the molding off the bathroom door.

- [Lexie] She ripped the thermostat off the wall.

If your Mom hasn't told you today that she will kill you, you're not living your best life, 'cause she would just look at me with just like daggers in her eyes and say, "I'll kill you!"

And I was like, "Okay, Mom, good luck.

(laughs) I'm like six-foot, 180."

(Kitty laughing) "You're 75 pound wet.

Let's do this."

(laughs) (pensive music) - I know that your Mom hit the rage stage pretty early.

I know that there's been, that the police are quite familiar with your parents' household, and familiar in a good way.

And they're like, "All right."

- They're amazing.

- Yeah, "We know."

- They are amazing.

- "We know there's things going on there.

We know we're gonna be called, and we'll just, you know, do our best."

- [Grace] She's really hard on him.

I mean, she's- - [Ashley] I would say that they're living in an abusive relationship because there's been violent situations- - Yes.

- with her as well.

She's, when I say abusive, I mean- - She's hit him, and she throws stuff.

- emotionally and physically abusive.

There's nothing that's gonna bring her outta that except for that click or the switch going off or whatever it is in the brain that suddenly calms her down, and it's really not, just completely out of our control.

- Yeah.

- [Lexie] One, two, three, in the mouth.

- [Kitty] Things started to get really bad.

She went through a period that I like to call Downer Town that spring, and she just hated everything.

That's when we got Barnaby.

- Oh!

- I was just desperate for something to look at me with love.

(laughs) So I adopted a dog.

'cause Mother sure wasn't.

So it was just too much.

I just felt like I couldn't do it anymore.

Oh, please don't do that.

Those are my glasses.

Oh, Mom, that's not good.

(mellow music) (text thuds) (mellow music continues) We had done our research and decided to do memory care.

(mellow music continues) (tag whooshes) - [Joanne] Maybe we'll have some fun.

Maybe we won't.

But there's one thing for sure, we are now moving into larger circles.

- [Kitty] So you guys have ended up in a situation this week where you have to pivot very quickly.

- We found out the caregiver had quit.

We call each other, and we're like, "Okay, what, what, what now?"

- Well, we had talked, and I said, "I think we've got like four options here."

I think I remember saying, and then I said, and one of them was respite care.

- And respite care, this is what, a week, two weeks?

- To be determined.

- It can be as long as you need because it's a month-to-month thing with this place.

- So it's just something to get her out of the house, get her regulated on her meds.

- Get her back on medication.

- Give your dad- - Give her some medical care.

- a little bit of a break, and then what?

Look for another in-home care person?

- So we are thinking that either we can hire somebody to move into the house, or maybe this is a really good move for everybody involved, and she can stay there.

- Yeah.

- [Ashley] I think we're gonna have to- - We'll see how it goes.

- We're gonna have to see how it goes for my dad.

Right now, I think he is crying out for a break like this but at the same time feels like a massive failure in asking for something like this.

He doesn't have to make a decision.

He doesn't have to feel guilty.

We're just gonna take the reins on this.

It's a month-to-month situation.

Let's get her the medical care that she needs.

It's better than a hospital stay.

He cannot provide medical care.

He is not a doctor.

And he can just go back to being her husband and her friend.

(gentle music) - My sister's experience with the memory care facility was slightly different than mine because I was watching these people just roam aimlessly around this building.

It was set up that they could just kind of circle within the building, and I just felt like there was neglect.

And then I would take her out of the facility, and I would notice behaviors that were like, "That's when she doesn't have her meds."

And then we'd go back, and they're like, "Yeah, she wouldn't take 'em this morning."

And I guess they can't force 'em to take 'em, you know?

But I feel like there was ways you, I mean, we figured it out.

Like, "You're a professional person.

(laughs) You should've figured this out, too."

(gentle music) (birds chirping) I had her the night before, and I think that I didn't take her back till like 9 or 10 o'clock that night, it was late, and put her to bed and then showed up the next morning, and she had a pretty good-sized bruise on her arm, I believe, her forearm.

And I wanted to know what happened, and nobody could give me an answer.

So something happened in the middle of the night, and I was like, "That's it, we're done."

(gentle music continues) - [Kitty] So she was there for five weeks, and that was about all we could stand.

We went, (laughs) I called 'em that night, and I said, "We're getting her tomorrow."

- Yeah.

- "You no longer get to play with Gloria.

You're so bad, we're taking her back, and she's terrible!"

(Allyson laughs) (gentle music continues) [Kitty] Memory care works for a lot of families.

It just wasn't us.

- When you have this disease of which you don't know, four to 20 years, you don't know how long this is gonna be, It's very hard to plan financially for it.

And what happens is you get into that world of, "Well, how much does this cost a month?

How much do we have, and how long do I think they're gonna live?"

It's an awful, awful math problem.

- I know that Rosemary, her funds are getting very, very low, and you guys are having to look at alternatives.

- In under four years, her life savings was gone.

$278,000, like, under four years, gone.

There aren't really any options.

When the money's gone, it's Medicaid.

- It wasn't long before he needed assistance with a lot of activities of daily living, and memory care was $10,400 a month for Evan's care, and we paid that for probably about a year.

So the only thing that I could think to do was try to move him into a community that would ultimately take Medicaid, but the only way that he could take Medicaid is if he had no money.

And so what we wound up doing is getting a divorce.

And I remember the day that I told Evan.

I said, "You know, we're gonna, we need to get a divorce," and he cried.

(gentle music) Okay, ready?

Here we go.

Once he was eligible for Medicaid, we were able to move into some care communities that we could afford.

Very good.

- [Matt] It's shocking.

Like, millions of people don't get that, and that makes me angry.

There's no right answer.

- Hello, everybody.

I love you so much.

Oh, I can't believe it.

(gentle music) - We've had people stare at us as they drive by.

I think they're looking in to see if we are indeed drunk and have wine and have dementia.

(laughs) - Suffering from dementia.

Somebody asked if we knew where we were going next.

- Yeah.

(laughing) (jazzy music) (jazzy music continues) - [Beth] Why are we going to North Platte?

- My mom was born there.

- Oh, wow!

- Yeah!

- [Beth] This is where your people are from.

- It's time to pay tribute to the family that I've never met to thank them for the family that I so adore.

Lister!

Ah!

(bright music) That's awesome!

(laughs) This is so cool.

This is my great-grandfather and, my mom's grandpa, and this is my great-grandmother.

- Wow.

- My mom's grandmother, who she would've never met her because she died like in- - In 1913, I'll guess.

- Smart-ass.

(lighthearted music) - [Beth] Wow, look at that!

- [Kitty] Oh, vultures, how apropos.

(gentle music) - [Veronica] This is a part of life.

- [Kityy] Right.

- Death is a part of life.

- Yeah.

- But I know what happens at the end of this disease, and it's like one of the hardest, darkest periods of this entire journey.

One of the toughest times was my grandmother and that end stage, and that, part of it was because I had my mother, too, who really, I don't know that she really understood everything that was going on.

So it was really me on my own dealing with my grandmother.

She was on hospice the last two years of her life, at-home hospice.

That was a lifesaver because I did have, you know, someone to at least give me some sort of guidance.

(chalk scratching) (somber music) - [Nicolette] When you hear "hospice," you're like, (sighs) "Okay, all right, we're getting to this close.

We're getting to some conclusion."

But the truth of the matter is is this is not a reality that you want to face.

(somber music continues) - It's hard as a care partner to not go sometimes to the place of, "I don't know if I can do this anymore."

And they would be happier if they weren't here, and I would be happier if they weren't here.

Partly because I want my life back, and partly because it hurts me so much to watch them be who they are when I know that if they were calling the shots, they would say, "Stop, I'm ready to not be here anymore."

But you can't do that.

- I was the one that was like, (chuckles) "I am not gonna let my mother go through this.

I'm gonna put a pillow over her head.

I will not."

You know, like, when I heard stories, you always wanted me to watch movies or read these books, and I was like, "I don't wanna know.

I don't want to read or know what is gonna happen to my mom in the end."

(keyboard clicking) - Hospice, you know, you have that lovely kit, that comfort pack.

- Are you talking about the drugs?

- Yeah!

(Kitty laughing) They call it a comfort pack.

I don't find it very comforting.

- I don't think our hospice did that.

I think they just said, "Look, here's the morphine."

- [Rosanne] Yeah.

- "Give it to her."

- Yeah, yeah, and I had to give her the morphine on Saturday, and I stood in my kitchen, and I was like, I said to Kevin, "I don't know if I can do this.

I just don't know if I can do this because I'm afraid I'm gonna kill her."

- One, two, three.

- Okay.

- Oh!

- Okay.

There were oftentimes on this journey where I was having two opposite feelings at once, and one was, "Oh, my god, I hope she just dies in her sleep tonight."

And the other one was, "I'm not ready to let her go."

(gentle music) - Through this whole experience, everything changes.

What happens in the morning and happens in the afternoon to the evening, things change.

It changes all the time.

It's reactionary.

You can't plan anything.

Now she's in bed, so it's a whole different world of caring.

(gentle music) At one point, she looked at me, and she said, "I'm leaving, and you're gonna go on."

- Wow.

- Swear to God, and I was like, "Huh?

What?"

It was almost like she was saying to me, "You know, we're, we're getting to the end here, kid."

- She was!

- Yeah, "Getting to the end."

- That's exactly what she was saying.

- Mm-hmm.

(gentle music continues) - I knew it was coming.

I thought I was ready.

- [Kitty] What Mom went through in three days, we expected to be like Dad, which he went through in a few hours, and it wasn't.

The hospice actually called it a death plateau.

We couldn't rush it.

Whatever that decision-maker is, whether it's just finally her last organ giving out, or it is a spiritual entity who says that you're done, or it's just the soul recycling itself and saying, "Okay, now I'm ready.

Gonna go on to my next adventure."

(gentle music continues) - It's just knowing that you don't have that control.

- [Kitty] Yeah, yeah!

- But I think that being a caregiver all this time kinda trains us to know that we don't control anything.

(gentle music continues) I had a therapy appointment, and I was like, "You think I could go to my therapy appointment tomorrow?"

They're like, "You should be fine."

Therapy appointment's an hour.

Clearly I'm going through hell, so I wanna go to therapy.

- Yeah.

- And I'm like, "Can I go?

I don't know.

Should I go?

I don't know."

And so I go to my therapy appointment.

I finish therapy.

I'm on my way back.

I stopped to get gas, and I get the call that she's gone.

- Aw.

- And I wasn't there.

(calm music) - [Allyson] Oh, my god, it's, its, it's over.

It's over.

And so there is, of course, relief, huge relief, but there's also this incredible sense of loss.

There was this little tiny magical thinking part of me that always just kind of hoped that maybe something was gonna change and that maybe they'd come up with a cure, and maybe there would be a way to rebuild the brain tissue that was lost.

That little magical thinking part of you is just dashed.

It's done now, it's over.

It's really gone.

(gentle music) - [Rosanne] I miss her.

It's just how it is.

I just miss her.

(gentle music continues) - [Kitty] I couldn't view the diagnosis as a death sentence.

I had to think of it differently to get myself and Mom through it, and so I did.

I thought of it as, "This is her end of life.

Focus on the word life.

Let's see how much life you can help her have."

(lighthearted music) (Kitty laughing) - Yay!

(group clapping) (lighthearted music continues) - [Kitty] Come on.

Come on.

(lighthearted music continues) (Gloria laughs) - This is a video one.

(lighthearted music continues) (lighthearted music continues) (lighthearted music continues) (waves whooshing) (upbeat country music) (bell clanging) (upbeat country music continues) - [Kitty] Hello, Mother.

Good morning!

(laughs) She's going home.

I'm dropping her off.

The rest of this is all me and Mr. Bones.

- Yes.

(Kitty laughing) Great trip.

I'll never ever do it again.

(Kitty laughing) But you know, you gotta try things.

- What about- - You have to get outta your comfort zone.

- What about- - And there is nothing more uncomfortable- (Kitty laughing) than that RV, so.

- All right, all right, I get it.

- All right.

(Kitty laughing) - I won't ask you again.

Matching ponchos!

(laughs) - Matching ponchos!

Kitty, what's for dinner?

- I'm having salad.

- Nobody's having chicken?

(Kitty laughing) (mysterious music) Can't believe we did it.

You still have a journey to go, but... - I know.

- I'm out.

I'm so glad you're with me, babe.

- Yeah.

- [Kitty] I adore you.

(calm music) (RV engine rumbling) (text pops) (calm music continues) (RV engine rumbling) - [Matt] Another silver lining of this whole journey is, you know, the things you learn about yourself through all of this, good, bad, ugly.

- Both.

(laughs) - All of them, yeah, for sure.

- I learned how ugly I could be, and I learned how awesome I could be.

- Yeah.

- And frankly, it's a, it's, it's a blessing to know both.

- Mm-hmm.

- Yeah, it's all part of the package.

- It's like, "Wow, here's what I can sink to.

Good to know."

- Right.

- And here's what I can aspire to, and here's what I can achieve.

(gentle music) - [Rosanne] Everybody is so isolated.

We're all in our own houses, in our own little worlds caring for our people, and we think we're the only ones that are doing it when there's people all over the country doing it.

We just don't know them.

- [Veronica] There's gotta be a better way.

- Yeah.

- We're far down the road, but there is a new caregiver born every day, and people don't have resources, they don't have 'em.

They don't know who to turn to, how to figure this out, questions to ask.

It helps to talk to someone who's been through it.

(calm music continues) - Maybe this movie will be seen by enough caregivers so that we push a generation of caregivers a little further down the road, and then they in turn can figure out the way that they're gonna let the next generation of caregivers get a little bit of a headstart.

And maybe we can all stop being so- - Blind.

- [Kitty] Yeah!

- Find your people.

Find your people.

- [Kitty] Build your village.

- Build your village.

If you don't have them, if they don't exist in your life right now, that's fine.

- [Kitty] Find 'em elsewhere.

- [Rosanne] Find them elsewhere.

- Oh!

(gentle music continues) - Yay!

- Are you filming us?

- It's looking up.

- Welcome to Alabama.

Thanks for coming.

- Thank you for having us.

- Whoo-hoo!

- Caregivers strong, yeah!

(group laughing) Okay, so I'm here with my friends Rich and Heather.

My friend Tess is coming, and this will be the first time we've met.

- Oh, my gosh, it's so good to see you!

Oh, I'm so happy that I get to see you.

I brought a present.

- Oh, my gosh!

- [Kitty] Ah!

♪ Wine, women, dementia ♪ - [Tess] Wine, woman, no comma.

- [Kitty] Wine, woman, and dementia.

- They misspelled it with no comma.

- [Kitty] From Tess.

(laughing) ♪ Ooh ♪ - Where's the music?

Cue music.

- We don't...well, we don't have the money for the rights.

(both laughing) ♪ So we're just gonna act like there's music here ♪ ♪ 'Cause music makes ♪ ♪ Everything better ♪ ♪ It's a documentary ♪ ♪ We didn't have any costumes or makeup or music rights ♪ ♪ Part two ♪ (Kitty laughing) (upbeat music) - Cheers to you, Mom.

- Cheers!

- And we are sitting out on one of our favorite spots that we used to sit out the last seven months of Mama's life.

- Here's to us and to my mom.

I love you.

I miss you!

- Mom, this is to you for showing me what strength is.

Cheers to you, my lady.

- Here's to Mama Frankie.

- Salud.

(glasses clink) - Good?

- A little on the weak side.

(both laughing) - Jean, you're my sister, and I love you.

I'll be here for you no matter what.

- But you showed me how to stay strong and hang on.

Cheers to us, Miss Fran!

- My mom, Arlene, was the best mom in the world, so cheers.

- Cheers, everybody!

(bright music) - [Announcer] Funding for this program was provided in part by... - [Announcer] CareScout.

Whether you need aging care now or are planning for the future, CareScout can help you navigate your aging journey with confidence.

- [Announcer] Additional funding provided by... - [Announcer] Education, support, and resources for family caregivers.

Happy Healthy Caregiver.

Advocate for Mom & Dad, caregiver books and resources.

- [Announcer] A complete list of funders is available at winewomenanddementia.com.

- [Announcer] Visit winewomenanddementia.com to order a DVD or digital version of the film, including the full feature and deleted scenes or to purchase a community viewing license to bring the film to your school, business, conference, or retreat.