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[theme music/ archive video sound in background]

[Susan] When you born, You born naked into God only know what?

And when you die, you die, and that's it.

[theme music with archive video sound in background]

Because we all in life will come to the end of the road,

and we will stand at the cliff.

And if we're lucky enough, we get to choose what we do with the cliff.

[opening theme music]

[women laughing/ insects trilling]

Hey girl!

I don't think I met you to her.

I can't think of her damned name.

Tell me your name! Lisa. Lisa!

I have, close encounters with people I don't even know their name now.

[ambient camp sounds/ cross talk]

I am still Susan.

I’m gonna put some onion in here too, hang on.

I just perceive things or express things different now

because dementia robs me of the ability to open like a flower, as I once did.

[Susan] [indecipherable]

What that?

You want some?

What? This is a kitchen.

What the hell?

Is this ours Heather?

It go in there.

You open your petals and you show how self be, and they keep moving

you over to the shade and you're a sun lover, you quit blooming.

Do you want that on the grill?

Here, where are we going, mom?

With this, too?

Okay, let me find a mitt.

For turn. We're just going to sauté very light.

I don't want mushy.

It's always good to see mom in her element with her friends.

No one's thinking about dementia or talking about it.

She's just having fun and laughing.

And it's like a glimpse of my mom that I had growing up.

So that always makes me happy.

Go! [laughing & balloons popping]

Your parents take care of you when you're young, and then at some point, if you're

lucky enough to have your parents around long enough, the tables turn and it's

your turn to take care of your parents.

Ten years ago.

You know, I talked to my mom almost every day on the phone, and we would

have long conversations.

We would go Christmas shopping for the kids together.

She was just a lot different than she is now.

And I miss her.

I miss her a lot.

Well, she's here, but she's not, you know.

[campers talking]

[Susan] Life is a circle.

You come in and you go out.

And in that process, things happen.

Children are born, you move, you marry, you educate, you romance.

You grieve. Well, losing a parent is part of that process.

The process leading to that can affect how they perceive that loss.

I want them to know that they did everything they could.

I never want them to thinking back.

I could have, I should have, I wish I had.

I want to be here long enough to get them to have all that work out ahead.

FTD is a form of dementia that affects a person's personality, their behavior,

their ability to speak, their ability to understand speech.

It's like dementia.

And I was like, oh, well, that's like better than having Alzheimer's, right?

And she's like, well, not really.

And I was like, yeah, but at least you like won't know what's going on.

Like it'll suck for us, but you won't realize, you know, she's like, no, I'll

be completely aware that I'm becoming unaware.

She said it's the strangest thing to be in this body with this

brain, and start realizing that you're slowly losing you.

And you is constantly changing.

I knew there was something wrong with me, because weird things like from a sitting

position to a standing position, I could just fall flat over.

And the best way I could relay that to to the doctor was, it’s not like my legs are

asleep, and that tingly, you know, and they're just feel funny.

It's like I don't have legs.

What I remember is him saying that 2 to 7 years is the average lifespan.

With this diagnosis, we needed to get my affairs in order

sooner rather than later.

And then that's the last time he made eye contact with me.

[road noise]

I Live in Tulsa, Oklahoma, with my sister and brother-in-law

in the house they bought so we could all live together.

She has eaten. [Nancy} She said she has.

I've been here all day and I haven't seen her eat.

Have you seen her eat?

I haven't been here all day. Well, you go tell her.

Unless, she's sneaking in the bathroom.

Her bags of popcorn.

She's got bags of other things in there, too.

Oh, you got something in your tooth.

There we go.

I don't know, I haven't tasted it yet.

Mom can't tell. She can't taste anything.

No. It's alcohol. You can’t have it.

I love you.

You feeling overwhelmed with all these people? [Susan] Little bit.

But it's good. It's good.

See that? She happy as a little rat.

She's tired, and she'd do for mom a lot.

If they're happy, then you be happy, them. [sic] They're upset, exit.

I feed off their emotion.

So when I hear them all planned, come and

enjoy. That cues me what I supposed to be do.

You got away from me.

The word suicide is,

like somebody just whipped out a gun.

I mean it’s like: ahhh, don't say the word.

Amongst my closest peers, we do have those discussions.

If you are going to be there for a person that is newly

diagnosed and their loved ones offering support, we know

that this is a terminal disease, why is that not part of the discussion?

And this is a slow death.

So it's not like you're going to just keel over one day.

You're going to watch the process of death.

So shouldn't we talk about that openly so that everyone feels well taken care of?

And you on other side feel as though you met the needs of your loved one?

[theme music]

I remember mom saying, somebody better make me a little cocktail of pills,

because I am not riding this motherfucker out til the end.

And I was just like, oh she’s kidding.

And then I realized, no, she's not kidding.

I was like, mom, I am not doing that.

I'm not giving you pills.

I'm sorry, but I just feel like you don't get to choose when you leave.

That's God's choice.

Your life has a whole plan.

You don't get to do that.

My God, you're going to kill yourself, and you're going to go to hell.

And you have a purpose.

No matter what suffering we have here on earth, there's a purpose.

And you just have to trust in that.

[door scraping]

Come and make a baby’s mucca bukka. [sic]

Make a mucca bukka? [sic] Make a mucca bukka. [sic]

That means, that's watermelon.

Then I can run a hose clean.

Let’s hold hands.

[cross talk]

I fall down here all the time. Mom, I feel like you shouldn’t walk down the

stairs with a knife in your hand.

Let me hold that for you.

You are making me nervous. She won’t let go of it.

[laughter]

Oh, you guys are cray cray.

None of us know how or when we're going to go.

I was raised in a very religious Christian family.

Taking your own life to me is, it’s one of the biggies.

You don't kill people, you know. You don’t kill yourself.

So to me, that's what I can't get past, is the fact that I don't want Susan to suffer.

That's the last thing that I want. I understand why she’s doing it.

I just didn't understand why she had to let other people know that she was doing it.

Mainly my wife, because I'm the one that's living with her and seeing how

it's affecting her.

First and foremost, the reason for the particular month was July 4th is

Independence Day. Tada!

It just was like a poem almost to me.

And there would be fireworks and the celebration

of independence and the fight for it.

And there was just so many analogies that resonated with me.

So that years to come, when my children, our family

it would be a celebration and not a wah, wah, wah.

I’m gonna put it in my mouth! No!

[cross talk]

[sparkler fizzing]

That is no cigarette! That is not a cigarette.

[cross talk]

I was trying to be considerate, and I always will be considerate,

of what mark will that leave?

It’s important. I don't think it have to be tragic.

I just don't, but I also don't want to be laying in a bed, and they think

I'm comatose, and I'm hearing I'm them going: whew, is she almost dead?

And that pitiful thing I don't do pitiful. I don't like it.

That's complete different.

Pathetic, suffering. Ugh.

No.. don't want it. Don’t want it.

[theme music/ dishes clinking]

Let's do this real quick while I'm thinking about it.

Is your mouth wiped off?

What's on your glasses?

Little bit of cinnamon roll.

How do you do that?

One. Two. Three. Four. Five.

Don't breathe. Six. Seven.

Eight. Nine. Ten. Done.

I feel like I'm missing time with them.

But if I'm not at mom's, then I'm feeling guilty because it's been 2 or 3 days

since I've been to mom's.

And you don't know what tomorrow looks like with FTD.

Nobody knows what's going to happen next. Will she lose

her ability to speak completely?

I don't know, she could, but she might not.

Will she get to where she can't walk?

I don't know, she could, but she might not.

I mean, there's like, so many different variables, and you just don't know what

the future looks like

or how soon or not soon the changes are going to happen or what the changes are

going to be. Inside

sometimes I feel like I'm never completely exhaling, and I think it has a

lot to do with the fact that my mom being sick stresses me out.

[theme music/ background cross talk]

Sometimes I wish that she'd say I've been faking everything.

I've known exactly what's going on.

It would be such a great treat.

And that's the whole thing.

It's dementia and it's going to keep getting worse.

I hate that part of it.

Nancy, in the beginning made it very clear: if it gets to the point of, like,

bathing mom or having to do any kind of physical care for her, she doesn't want

to do that. She just wants to be her sister.

And I get it.

She just treats mom the same goes through all the days the same.

It's reached a point where she can't really do that anymore.

And Nancy’s being I think, forced to deal with the fact that her sister has got a

disease and it's real and she can't ignore it anymore.

What I'm trying to provide for her is a haven where she can just have this

disease, not be judged, not have lots of demands placed on her.

You know, if I want to do that, I could just dump her off.

I leave this on the outside in the hopes that I'll read it.

It says dirty. This will feel good with a smiley face.

Take a shower.

It's like a sensory overload.

The water, the sound, immediately thinking whating [sic] doing here.

I mean, there's a recognition that that's where you bathe.

But the steps involved in that are very foggy.

But here's one thing that concerned me. What?

[Nancy] I kept waiting for you to rinse your hair.

I did. No, you didn’t. But, it’s in a towel.

I know, but it's not rinsed.

Oh, fuck. We got to do that again.

Maybe we could just use, lean your head over the kitchen sink and we can rinse

and, really there’s soap in my hair?

You know what I've noticed a couple of times, Susan, is that, you showered, and

I know you have, because I can actually stand near you.

But, but your hair looks a little bit greasy, and I'm thinking, well how, she

just washed her hair. How come?

Now I think I know why it's the rinsing step.

You know, the steps that you have to go through. Yeah.

You missed that step.

It's all good.

Some days I think, you know, I hope she doesn't ride this out to the end.

When they first moved in together, mom insisted on paying rent because she

didn't want to be a burden, so she did pay rent.

But then she was not working at all except for just the one client.

And she really couldn't afford it, and then she kind of kind of started forgetting.

Nancy and Terry never wanted to take rent, but mom was insistent.

So it got to where mom was kind of forgetting and she didn't really have the

money, so it just kind of went away.

There is no life insurance.

There's no money in an account somewhere.

She literally lives on Social Security disability check, and what she makes

cleaning her one client's house.

I just feel like I have to keep an eye on it, because I don't want her to do

something like oh, I forgot to tell you, I got a $20,000 credit card and that she

wouldn't be able to pay every month, you know.

Oops. That’s OK.

I see better now.

That try. [sic]

Last month was the first month that she needed me to pay the bills for her.

She needs to pay her Penney’s on her credit card.

Do you know how much you're paying?

8-0. Eighty dollars.

Is there any way that you can tell me what the balance is on that?

Like, can you tell me the balance and the minimum payment? [clerk] Yeah.

OK. so the statement balance is $275.67.

And then I guess the minimum payment is $35.8-0.

Okay. She's going to pay $80 dollars. Okay.

Can you just verify it for me, please?

There’s your receipt.

Thank you so much.

I appreciate you. You guys have a good day. You too.

You try it!

Oh, you've got the wheels locked because you climbed in like a chair.

Lock, unlock.

Okay, there we go. That's the problem.

Yeah, that's what I say.

I can't go a place where I would get help.

No one going teach me.

I look okey doke.

When I'm in a Depends and drooling, [sic] will then it be valid? [sic] Would you do

it to a toddler? No you wouldn’t.

You'd sit for hours on a potty chair until they learn how to do it.

You'd fix their food for them because you know they can't.

But we won't do it to somebody that appears to should have knowledge.

That's wrong.

And I don't know how we can change that.

Yes, bring aware.

Yes. Show that there is life.

But what does that life look like when we still look okey

doke but in here is scramble egg. [sic] And

people are still expecting logic and reason.

But you can't.

That's what this disease do you. [sic]

And unless you live that person, you might not ever know.

Incoming Calls. Press Uconnect phone button to answer. Hey baby.

Yes, baby.

Can I put on that purple eyeshadow?

Since I'm not going any...

since we're not going anywhere?

Yeah, you can. Only go, it only goes on your eyes.

But I got to get off the phone because I'm driving with grandma, OK?

Okay, I love you, bye.

[road sound/ Susan walking]

I started advocating for dementia mentors.

I advocate in our home with a monthly memory cafe, bringing the social

aspect to the disease for those diagnosed and their care partners or family members.

How's life treating you?

I got the record player out again. should have called you and told you to bring me

some records. I’m playing Elton John right now.

Elton John will do.

Yeah, fact I may... [sighs]

How are you in the heat? It’s been hot.

I’ve been staying in.

Staying in, it’s too hot for you? Yeah.

You look like you're kind of washed out tonight.

Kind of what? Washed out.

I thought maybe the heat was bothering you.

And he was only diagnosed in January of 2012.

It's, severe dementia.

And it really affected this communication.

I mean, the front part of the brain, he just does not, he's not able to

understand what I say.

And I can't understand.

Yeah, he speaks, but it's like word salad.

Did you bring your harmonica?

Check a pocket.

I think I put it in there.

You’re... that's not it, babe. Yeah.

Okay. Look how many.

Yeah I know. What up with that? They’re the same.

There are all the same. See.

On other side, uh, have a pocket? [sic]

I said with pocket.

There you go.

It's, it's stalled up on me, I think, but,

I get it.

You have it on? Blow way baby.

[harmonica music]

I'm getting to a point where I can't do it.

I mean, he's so tall, and he is at a point where he cannot follow.

I hate to say a command, but a task.

It seems like there's so many things that they can go through, but there is no

order to the way they go through, you know.

And then I tell Steve, if you miss your medicine, you know.

And he misses it and drops it on the floor, you can't hear it drop.

So I find it days later.

There's really a lot of varying opinions.

You will never be alone again. You cannot be left alone.

Very good. What that song?

I know not the song, you know? Or just make it up?

No, no, it's just it's a song that.

[theme music]

[theme music becomes darker, wind blows, tornado sirens sound]

To be able to self exit, you have to be able to carry through the steps. You have

to be able to do it yourself.

So you have to be able to do sequencing events.

You have to be able to put things together.

You have to be able to do certain things and to be able to get the stuff that you

need to do it.

You have to be able to prove that you're of sound mind, that you know the decision

that you're making.

You understand what you're talking about.

You have to do all this before you either A.,

don't look like you really know what you’re

talking about, or for sure what you want to do or B., before you lose the ability

to put this equipment together and actually physically exit yourself.

If you can't do that anymore.

You've missed your window. You can't.

You can't do it.

And many of them are seeking the same end.

I just don't get it.

Did somehow, somewhere in the form of the group, we

suddenly forgot that we're terminal, that it's not going get better?

And then we've just piled them into the stigma pile, and that's where be stuck.

And I think wrong.

I just think wrong.

I don't give a rat's patootie what your choice is, but they

don't even know there are any choices other than what?

We'll tell you how brave you are so that ought to get you through.

Pffft, I don't think a fair.

I think that it is pretty sad in this culture that we

celebrate life, but we don't celebrate death

and yet death is as much a part of life as being born.

So why shouldn't we celebrate both?

If you say, I want to choose how I want to exit this earth.

Oh, no, you can't do that.

You're not allowed to do that.

How her final exit looks, I don't know.

But I know that it'll be under her own terms.

My mom hates flying; it terrifies her.

But you have to get on the plane to get to the conference.

She wants to see her friends at the conference.

She wants to make a difference because she's so torn and it's so hard for her to

do this travel, it literally wipes her out.

So I do feel like it's a sacrifice.

If it wasn't for the advocating and seeing her friends, we would not be

getting on a plane and going to do this.

And that's another thing that I'm saying when I say I think this keeps her going.

Okay, we got to pay attention to what it says.

Did you press the button or do I need to push the button right over here?

Press this when you're going there. Yeah.

Ready? Not yet. Not yet. Oh, man, I just got a new haircut.

I just burned half my hair out.

We tried to get you to wear when [cross-talk] I love that...

We said, don't smoke yet.

Don't tell me what to do! I didn’t...

it was a suggestion.

Wait. It's 6:25, we’re late. [sic] Oh, no, we’re late.

The people that I come in contact with, either through Facebook or when we go to

these conferences, it sort of

takes my breath away to hear the things that they have to say, the way that she's

touched their lives, the inspiration, the hope that she gives.

I'm just dumbfounded.

Thank you.

Oh, yes, definitely!

We don't want to be by ourselves.

Come on, come on.

The more the merrier.

Although you guys are really skinny, you make me look fat.

You may have to get out. I don't know.

And it is crazy that she's losing the ability to do all these things.

Yet she is not slipping up in the advocacy department, she's still doing so much

It’s Suchan, Suchan, yes, Suchan, you did good!

I could see your strength.

Yeah, yeah yeah, yeah.

Good evening, my name is Susan Suchan, and I'm so happy to be here tonight

with so many beautiful people working together and collaborating and learning

more about FTD.

They want her to be a part of all these different things.

All of her friends online seek her out and go to her.

She's like a mentor to a lot of people and absolutely, that keeps her from

slipping into a deep depression.

I've come to learn how others see this

progression that sometimes I'm not even aware of

I love giving people some shit [laughing]

So it's not that I'm really all that concerned that I might be a burden, hell,

they may deserve a burden for a little while.

It's the not knowing.

How long will I be able to make choices that are my decisions,

based on how feel me? [sic] I don't know, and there's not piece of paper that's

going to tell me.

It's a very solitary road, and it frightens me.

Honestly, that part actually frightens me because I don't want to fuck it up.

I could still drive.

I could just still go someplace far away where there's no one reminding me.

Susan, you got a bathtub full of popcorn.

You didn't shower for a week.

So, I can't fix that right now.

So we're going to go to the ocean instead.

You know, we talked about since the beginning of the year, she really wanted

to go somewhere with all of the family.

She wanted to see everybody having a good time together.

And it was just, mom and I tried to put something together, and it was just way

too hard and complicated.

So we kind of sort of gave up.

So the fact that we're getting to do this now is amazing.

What this at? [sic] Look at this.

Oh that's beautiful.

Where that at? It's not that far.

Where be? [sic] It's in Panama City, Florida.

You, me. What?

The kids. Here, this here on the water?

Emily, Trystian.

I don't have enough money, Heather.

Josh. You don't have to worry about it.

It’s all paid for. Who?

It's all taken care of. You don't worry about it. Done.

The trip is arranged.

I am a very, very, very lucky woman.

I have the best people in the world around me.

And I’m really, really grateful that we can do all this together.

Makes me proud and happy.

I know. And, that does not feel often. [sic] And I say thank you.

Oh, it's going to be so fun.

Yeah.

The water I have not be ocean how time long? [sic] I don't know, a long time.

It's been a long time.

When we moved to Florida, things just went completely out of control.

There's a lot of family dysfunction at that time.

So when I think of Florida, I think of being a survivor.

My dad died on November 25th, 1967.

My brother had been out playing hockey,

and he came in and he said, I know where daddy is.

Yeah, he's out in the garage.

So I can remember running out to the garage and seeing him in the car, and he

looked asleep.

I thought he was asleep.

And I went over and I looked in the window, and I saw when I peered in that

there were lights on on

the dashboard, and something in my little eight year old brain said that there's

something not right here.

So I just went running back in and told my mother that daddy's out in the car,

and she went out, and he had asphyxiated. The car had been running.

Daddy was my safe place.

I didn't want to think that he took his own life, because that would have meant

he abandoned me.

I felt like I was on my own.

There was a lot of abuse there between my mother and my brother.

And I hate to say that because I loved them, but it is what it is.

I was going to have to take care of myself.

Well, she left at 14 to leave home forever.

She never came back.

I know that when she ended up in Tulsa, she was homeless for quite a while.

She did get raped and they dumped her off after hours and she was bleeding and

bruised and some guy pulled up beside her when she was kind of walking along the

road, and she's crying and he offers to help her,

and he put moves on her in the car.

You know, it made me understand how Susan could hate men.

I got my first job and I met Terry.

Terry came and said, you know, my roommate, he has seen you, and he thinks

you're really pretty.

And he would like to know go out you? [sic] Okay.

So we went out.

It was more a friendship than anything.

He said to me, you know, we both could save a lot of money if we just moved in

if we just moved in together.

I got pregnant and he said, then we should get married.

So we did on our lunch hour by a traffic court judge.

I'll never forget it; the same guy divorce us! [sic] And we got married.

And, he warmed up to the baby thing.

He never was touchy, feely.

He did love Susan.

He truly loved Susan.

He just didn't love her like that.

I got a call one night.

It's the police department telling me that they've arrested Randy.

He's been arrested for sodomy with a 14 year old male.

I’m like what is sodomy?

I didn't know what that was.

And I freaked out, like, oh, my God, I have children at home.

Oh my God, you know.

Well, comes to find out, it wasn't with a 14,

they mixed the names up. It was sodomy.

He was in some little bookstore or something and got caught, and he told me

that he was gay and that he had the same lover for all these years.

But he had kept hid because his family wouldn't have ever understood that.

So we divorced, and he begged me not to, because he was fear of exposure.

Randy’s father had immediately said, cut her off of everything because we

had told them that I cheated so we wouldn't reveal his secret.

As a young child, my parents divorcing and then finding out in the fifth grade

that my dad

was gay, and then my dad being a heavy, you know, drug user, and him, you know,

just kind of disappearing by the time I was 12 and not being around.

And then watching my mom suffer through the things that she suffered through then

finding out my mom is gay.

And then I always thought I would go find my dad.

One day from his partner saying that he died.

So finding out my dad had AIDS, I never think about it like,

oh my God, this life.

Like it's just everybody's normal is their own normal.

But through all of those things, even when my mom wasn't making great

choices and I was sort of being the mom, we always had each other.

Isn’t it pretty?

And then when you open, you can see, ocean.

Then, then, then could write. [sic] I should put that in there.

Write stupid!

This is... the little ones may draw, but this isn't all to do in one day.

I have in that drawer journals from when I was pregnant with my

children, the clothes I wore when I was hitchhike on the road.

These to some people, those things are precious,

and to some that will not mean a thing.

They won't affect them at all.

So I have no preconceived idea, and I find it really interesting to

self to go back and look, years ago, what was my mindset?

What were my priorities?

It's it's in there. When I get old, some uh getta stoppa

dreamin. [sic] So I was think what uh say on we keep-uh tell

the babies. [sic] So, was thinka babies these. [sic] But I don't know how many.

Lydia.

Miles.

Allyson.

Ella.

Trystian. Five.

One, two, three, four, five.

Babies.

Lydia, what I want her know?

Boyfriends are fun.

So are drugs. Families the best.

Have a blast.

I don’t know.

May the...

sun always

shine

brightly the path.

I wrote Heather, my flower.

We make it to the ocean. Yay!

Now you wipe mom's feet.

Start. Now. New. [sic] Like ocean.

Fresh start.

Remember, when the sun goes down, it will rise again.

How lucky are we?

I love you. Mom.

I'm scared I'm going to forget who she was before she got sick.

It's already hard to remember, like, what did her voice sound like?

It's hard to remember what it was like before she got sick, and she's only had a

diagnosis for four years.

I don't want to forget who she was, but on the other hand,

I don't want her to go.

I want to take care of her.

There is no good option, that’s why I’ll just support

her in whatever she wants to do.

Cuz God knows, I could choose, you know.

Nancy.

Since the disease, she's babbling.

We go from... she’s almost like a rapid cycler.

She goes from everything's fine to the speech is incomprehensible,

and her walking is stuttered and and she's in a hateful mood, and

she has her brow furrowed and she's angry,

and I'm thinking, what is going on? What happened?

There's only one thing about exiting that I struggle with for Susan,

and that is, I just don't want her to go. Ever.

How do you? [sic] I'm doing pretty good. How are you doing?

I’ve missed you.

Then why don't you come and see me?

Because you don't answer your phone. Oh,

I'll make a surprise.

We got together in 98.

We split up in 2008.

Ten years later. She made every dream I had come true.

Literally. I mean, she was everything I wanted in a wife.

She took care of me, and I worked my tail off, make sure she had whatever she

needed or wanted, if was in my power to give it to her.

We were partners.

Very good partners.

That's not too bad.

I ate some toast this morning.

I weigh 180 pound.

You just got that on camera [laughing]

Stupid. [laughs] Can have?

Oh my God that's good.

You like it?

Don't get used to it, little girl.

You know she doesn't do that to me, she’ll sit down there and wait.

She won’t give you kisses either, hahaha.

Everything, you name it She could cook.

First dinner she ever cooked me, was spaghetti.

How can you mee-member? [sic] It was so good.

And you looked so pretty in that dress.

A dress? You were wearing a dress, yes.

I remember that day like it was yesterday.

If I were have a weak moment, she was the strong one.

Or if she was, I was.

We backed each other up like that.

I could just sit and talk to her for hours and hours.

We’d never run out of anything to say.

I was a fat, furry face, grandma that baked all the time.

She was wonderful.

The stories and stuff she’d read to those grandkids and she'd get animated.

I mean, she had asked them out and the voices and everything when she was

reading to them. They loved it.

I just set back and watch because I loved it, too.

But Susan was the one.

She's still the one, you know.

I keep telling you, she should let that go.

Oh, yeah, I tried, I tried real hard.

It just doesn't go.

Unfortunately, what I believe then to be the early signs of

frontotemporal dementia began to interfere with our relationship, in very

unusual ways.

I thought she had stopped loving me.

When we would go out or something, she acted like she was a 17 year old single

person and didn't matter.

If I was there watching or not or trying to stop or it didn't matter.

It was like she had no emotions toward me whatsoever.

Yeah, and I couldn't; no matter how I phrased it or said it or any way anybody

else said it.

So it was just devastating.

It have be their time long. [sic] And you decorated that tree. I did?

So that would be nine eight.

Uh huh. First Christmas. Yeah.

And this is the one you got me for Christmas present that first year.

And I remember you putting this one over here by my bedside.

You remember putting that on my nightstand on my side of the bed.

Which one? This one.

But look it just got prettier with the years.

[laughs] That one right there's the last one you gave me.

And that was a couple of years ago.

I always wanted to be one of those girls that aged really, really pretty.

You are one of those girls.

No, no. There's a difference.

I think of, like, Grace Kelly, Audrey Hepburn, that kind, that real elegant,

sophisticate. Lauren Bacall.

I always thought her as the beautiful. Susan!

What do you think you'd done?

Yeah, that's ten years ago.

That wasn't ten years ago.

That was like, 2 or 3 years ago.

You did age gorgeous.

You might be a little partial.

Could be. But I know women.

I know what women look good. What do you want?

What, what, what, what, what do you want?

I think that about those people I've watched at the nursing home for so many

years, and none of them could articulate like you do at this stage,

it amazes me.

The whole thing kind of seems like it's not real.

I'm really excited.

I'm finding a lot of joy in the fact that my little girls are talking about this

pretty much on a daily basis.

I'm super excited about hopefully watching the sunrise at the sunset with my mom.

I'm excited,

to see my mom's face and the girls face together on the beach for the first time.

[Nancy] So this trip, if I start thinking about that, the things that go through my

head are: Terry has no idea how to drive one of these huge RV's.

It's a really long drive and I am not a person who's ever suffered with anxiety.

But it seems like recently anxiety has become more and more of an issue for me.

So I try not to think about too far ahead.

[video conference sound] Susan, before you got here to this group, we were

talking about how people.

In the public, assume that you are either drunk on drugs

or intellectually retarded.

I'll use that word because that's how they treat you and you can't speak.

Well, I think for me personally, and I may be wrong, strangers that do do know

me personally, [sic]

they'll make attempt one if that dunna do, they assume

what they hear. [sic] Doesn’t it make you nuts.

[Susan] Hi, honey.

Look at your shoes.

You smell good!

I do. Yes.

What does it smell like? Well.

Like a perfume.

Like, oil.

Smells good. Smell that. My bra.

Yeah. That's it. Is the stuff? It’s the mic!

No, it's what I wash my lingerie, lingerie stuff out and all by hand, and

it smell good.

Sometimes I say shame on me, because

I don't know very much because I am distant.

What my aunt and uncle have chosen to take on, I am forever grateful.

That is a job within a job within a job.

Thank you coming. [sic] Yeah.

Get out of the house for a little while.

[whispers] Why are you here?

Family planning.

I can't have any more babies.

Okay.

[laughs] Family planning.

I did that a long time ago.

We don't really family plan, so, am I supposed to lecture you? I don’t know.

I don't really know. I'm here.

I’m glad you're here.

I will be a really good listener about this.

No. No family planning.

No, no, no, I getting it this is for the coming trip. Yes.

And this is time that you should use your voice.

Yeah. You don't go down there and then no be happy. But you never said.

Right? No. You see. Me not. Yes. Yeah. [cross talk] My mother and I's

relationship was not a typical mother-daughter relationship.

It was more of a friendship on a teenage level

because I never felt that mother-daughter,

kinda of like you see with Heather and my mom, it was my birthday, so we'd go to

the bar and get sh♪t-faced.

That was our relationship, and I can only thank her because it's only made me who I

am today.

I don't look back with regrets.

I look back, maybe with a little confusion because I saw it so differently

with my sister.

She didn't do those things with my sister.

She would have never of allowed that ever to see that mother-daughter relationship.

It is hard because I, I do want that.

I don't know how to do that.

I don't know how to do that with her everybody being, we're going to lose our

mom, we're going to lose our mom. We are.

But I don't know what losing a mom is going to be like.

I've been begging that child to confront me with the mistakes I make a mother.

[sic] And, she never would do.

And I say one day the possible no be able answer you. [sic] So I'm

begging you, please give me opportunity to apologize, or at

least see things from your perception so I can understand.

In her mind, I already lost that ability

to understand.

[theme music]

Should we sit at the dining room table?

It might be bigger for everyone to fit at.

I mean, we have to bring chairs in there, but the table itself is bigger.

There's some chairs in there are at least

one. [laughing]

Here’s an example of the trip.

We're going to the big table. Come on.

Oh the carpet.

Oh I'm done.

So let's start off with pre-departure.

It's going to take us 15 hours next.

Yeah 15.

And one thing about with the younger children and anybody is that we don't

have to stop every time that somebody is go bathroom because.

Praise God not every time.

But I think number twos need to be stopped for...

I’m just saying No. I think I'm probably with you on that one Josh.

I'm just saying.

Unless you can get enough [cross talk] incense and air spray going on in there.

Should we budget in the Fabreeze or what? [laughing] Costco’s has it...

Fabreeze doesn't last as long. Bulk!

Well see this is where we open all the windows and it becomes a smoking vehicle.

Smokers and the dumpers ride again!

I'm telling you you’ll wanna have it.

OK, I’m writing that down. Smokers and dumpers.

The day will come when this wouldn't be possible.

So I'm glad that we're doing it now.

Walking is some days are better than others, but it's always affected now on a

daily basis.

Her speech is getting worse.

I would hate to have this opportunity, but she had to be in a wheelchair and she

couldn't talk anymore.

It would drastically change the whole experience.

Time is of essence, think.

If we were not doing this with Susan, we

would live in a house that was half the size.

Actually, we wouldn't live in Oklahoma at all.

I would have already left.

I would like to not have so much stress, not feel like I have to work so many hours.

That gets old.

At this point in my life, I'm ready to slow that way down.

If we had some other arrangement, maybe she say she moved in with Heather.

I probably would never see her again because she wouldn't come to me.

My son and I had this conversation.

He really thinks that Terry and I need the adventure.

You know, we've been together for 40 years this summer and that we need to go

out and do it.

We did the kid thing.

We've done the work thing.

We're really ready to play, he said.

You know, you only live once.

I said, I know, think about that.

Susan only lives once.

He said, you may miss this opportunity.

And I said, yeah, I know that goes both ways, that I may miss the opportunity to

go for the big

adventure, or I may miss the opportunity to be with my sister until the end.

He said, you're right.

You're doing the right thing.

Sometimes it’s not the same as what it used to be.

Sometimes it was just totally different from what we used to know honestly.

[Emily] Each moment can be so different with her.

What kind of mood is she going to be in today as I watch her eat is she going to

have trouble swallowing that? As I watch her walk around the house

is she gonna fall, do I help her with that, cause she is very independent.

Is it going to piss her off that I help her with that?

So even trying to have a conversation sometimes may be a really difficult thing.

It's that fear of not knowing what I'm to do and what she's going to do.

Okay. Look at that girl’s fanny!

Mom. What? [laughter] Chickabee!

We can't tell if she's even joking sometimes.

And then you have a huge grin on her face, and we're like, that was a joke.

She has a beautiful little fanny, what how nice? I don’t mean [sic]

[indecipherable] It’s fine, mom.

I’d be hanging that baby all out if I had a fanny way. [sic] Heck, yeah.

Look in front of the camera like that.

You enjoy that youth, honey.

I can wear shrinky shorts.

You a pretty girl, I no mean offend you. [sic] No, you didn’t at all.

You're fine. You're good, you're good.

You're not in the driver's seat with the disease at all.

And some of that fear, I'm very uncomfortable with.

[theme music/ insects trilling]

I'm still talking.

I still have things to say.

I think it's important for the world to see that you can be umpteen

years into diagnose [sic} it may be different, but I'm still a human being.

I have input.

And the biggest reason is my children.

Sometimes, as much as I love my children, I

curse them, because it would be much easier for me to say I’m done.

But that's no fair them and I signed on for mom, and I taught them the word promise.

So it no time yet. [sic] She's gonna die.

Everybody is everybody’s gonna die.

But I think why I can say it with such

non-emotion is because I have peace with that.

As time has passed and I've seen, and I've had to realize and accept the fact that

she's sick, she's getting worse and I've learned more about FTD, I guess

I just changed my mind and I do still struggle with my faith on it.

But I'm going to support my mom and whatever she wants to do.

[angelic theme music]

[cross talk]

See, this one looks more like a van...

[Emily] What am I doing on this vacation? Having fun.

Yes. I'm going to have fun.

And I'm rolling with it.

It's going to be fun. I'm not having a plan.

I'm not making a schedule.

I am just going to have fun and enjoy everybody.

[Susan] The no go road with that. [sic] There more storage there.

Oh let's go here.

[production sound mixer] Susan.

[director] You probably don’t want to do that. Why?

I want to see.

There's no pool or nothing up here.

I thought there was like a pool.

[Josh] Oh! Can’t ride up there.

I thought it was a pool or something. Haha.

You know, like a penthouse.

No. no.

No pools.

[Nancy] Susan, why?

I thought it was like a penthouse up there. [laughs]

[RV generator running]

I would rather not take her anywhere.

It can put her in a real pissy mood sometimes. She gets disoriented about

where are we going?

What are we doing? Oh, the cars. She's not in control.

She's not the one taking the vehicle where it needs to go.

And I think it causes a lot of confusion for her.

[RV motor running] Hi, honey we’re home.

[Susan] How’d it go?

Good. I followed all three of my rules: try to stay in the lines, don't hit

anything or anybody.

In my past,

I would have been the girl with the face to the window.

Oh, look. Oh, look.

I want to share that with my grandkids that sense to wonder, adventure.

No anxiety.

Though, I sense that this trip is centered around me in some way.

I want to be the best Susan I can be.

But I'm probably gonna, you know, piss my pants and scream. [laughs] If you see me

with the Pez.

That’s not PEZ in there!

You do what you have to do.

And if that mean, mellow yellow, then that okay to.

[RV generator starting]

[theme music]

I don't want anybody to forget how wonderful this trip is gonna be for us.

So, I want to give each one of you a journal.

So this is for this trip, but I challenge you to keep writing.

Life is a journey.

Write it down. Terry.

Ella, can uh read uh say? [sic] Can you see what it says?

Never stop dreaming.

That's right.

Make it good, guys.

There’s a gooda chance all together. [sic] Thank you mom. Let’s write it

We gonna write a book all together.

[theme music/ tense sound effect]

She wants to go.

She's like begging me just I don't want to go. Like.

I feel like I should say it's not worth it.

The point is to make happy memories.

15 more, plus hours of this.

Really? You know what I mean?

Like, why are we making her do it?

It’s flipping her out.

So on one hand, I feel like that on another hand I feel like, but I think

she'll be fine when we get there.

But it's a real long time till we get there.

It just sucks that she can't just be excited like my old mom would have been

like, let's play some games.

What are we going to do? Come on Ella.

Like she would have just been like all about this.

Step there.

Oh, so she's taking some Xanax right now.

I'm going to get her headphones on.

Hopefully Xanax will help mellow her out.

You're going to want to make sure you're buckled in for safety.

Turn all your electronic device off before exiting.

Where are we going now?

Another Walmart.

She forgot her pillows, blankets.

The exit doors are to your left.

Are we going around the loopty thing?

[theme music-B3 organ]

Right there. My foot.

Xanax is wonderful!

Oh my God I feel so much better.

[traffic noise]

My life centers around whatever other wanting. [sic]

So I'm seeing them preparing

For what how say [sic]

right now for me want to go, but just not being bouncing

around in a vehicle this second. [sic] That feels beautiful.

There it is.

Isn't it pretty? Uh huh.

[theme music]

[seagull mew calls, waves lapping]

It was beautiful.

I think that image right there, will stay in my mind forever.

The sound, the water, feeling the sand was like powdered sugar in my toes.

How could not not be good? [sic] It was beautiful.

Now I can't figure out how to get back there. [laughs]

Now, I’m like the kids, I wanna go, I wanna go.

[carnival sounds]

[go kart motor revving]

[laughing]

[Susan] I had a friend in one of my peer groups.

She had made a date for her exit, and I watched her ahhhh, You get close to it

and you think, no, life sweeps you back out.

And she made a date of the date came.

She called me and said, today is not the day.

And, I breathed such a sigh of relief.

And, I've come to realize that I'm in that boat.

No one can know what’s in my head?

[children squealing in fun]

And, I'm going to have to stand up to plate.

It is not easy.

Nobody wants to die. Nobody wants to die.

But we know what this is gonna look like.

[bumper car riders squealing in delight]

I hear some people say oh, they were so brave, how valiant of them to ride all in.

Do they ask the family how that felt them? [sic]

We talk about making memories.

Really? Really.

Did you want those?

I don’t. I don't want my little six year old granddaughter

wondering what the hell happened to grandma’s brain.

I don't want that.

It's selfish.

Call it whatever you want.

I don't care.

I do get to choose.

[crashing thunder with sounds of rain falling]

If I did not organize family get- togethers, we would not have them.

And family's important. So I do it.

And mom used to be the one to do it.

And I do it now.

But when mom's gone, I don't know that we all get together.

And it makes me sad, because there's nobody left.

It's just Nancy, Terry, Emily and me.

This is it. There's no grandparents. There's no nothing.

I wonder if it will be the last times that we're all getting together.

Okay, we're ready now.

I wonder if we could sit outside. I don't want to wait

an extra hour. [cross talk] Just like funnel cakes.

No, like fried food.

[theme music]

And, the sand’s so white.

Oh, look.

[ethereal theme music]

Could you push my foot in? Thanks.

Can I get mom sweet, unsweet tea? Half and half.

Yes. Pineapple Willies.

They have little bibs.

Okie dokie, I can do it!

So, what are you wanting? I want mahi-mahi.

[crowd sound fades]

[Susan] Leave the beach.

[ethereal theme music]

[Susan] It's getting dark. [Heather] It is getting dark.

It feels like over. Done.

I have known for maybe 2 or 3 years now that every time I throw

myself out life into, wahhhh! [sic] And I do it because it's life and I don't want

to miss a damn thing.

And, I pay a price for that.

And it's okay because it outweighs the event, outweighs.

And you never know what you're going to be left with after... what’s it gonna

look like.

That's the norm for me.

Not being around and not having that relationship like you and mom have.

So sometimes it's hard when we’re all around.

I've also went my separate ways a long time ago for my own reasons, and those

are my choices.

Me and ma are not very close people, and sometimes it's hard for me to see because

I may want that.

But that's just not how me and ma are.

Me and mom's relationship and you and mom's relationship doesn't have anything

to do with us.

And I love you and I miss you all the time.

I'm not judging you. I'm not, I'm not comparing the relationships. I hurt for

you, that you don't

feel that you don’t have that same thing that I have, but that doesn't have

anything to do with me in my eyes.

And you're the only sister I have. We're it when mom's gone, we have no parents.

It's just me and you.

And I'm always here for you.

And I want you to come around.

I want the kids to hang out.

I want us to get together and do stuff.

And I don't always know why you don't want to do it.

You, like, go through periods where you come around, and then sometimes it just

seems like you're just not there.

And I never know if I made you mad or whatever, but... I've also been used to

doing it on my own and it being me and Trystian.

So I have to learn how to call.

My concern is that we only get together if it's something because we're trying to

spend time with mom.

And so when mom is gone, I'm worried that I'm just not gonna see you.

Your family is your family.

You might not like them all the best, but you don't get to choose them.

But they are family. And I tell all four of my kids, you guys need to be

intentional and spend time together.

Because one day me and your dad are going to be gone

and you're just going to have each other.

You need to build these relationships now,

or you're not even going to know each other.

[ethereal theme music]

I'm afraid.

I’m really afraid right now.

I don't want to make decisions based on fear.

And my processing skills are so fucking slow now. [cries]

I hate it.

That I fear that, by the time I process it, thinking get head right, that it’s

too late.

That scares me.

That really scares me.

I've never died before.

[emotional theme music]

You told me a long time ago that we've known each other for a very long

time before we ever landed here on the planet earth, and we have known each

other's souls for a long time.

We will bump into one another over and over again.

You continue to teach me.

And, you’ve been just the pride of my life.

You got this girl.

Your heart is huge.

Your brain is brilliant.

There's nothing more I need to teach you.

Yeah, I know, but it's fun sharing the ride together.

And it's just going to suck when you're not here.

[ocean sounds]

One, two, three.

One, two, three.

[Susan] Nancy, hey pass the bottle of rum, please?

Yeh. Yo, ho, ho and a bottle of rum.

Are we really taking shots?

I thought that's what they said.

We’ve been doing that in the back seat.

I remember lots of smiles, smiling faces.

I'm sure I must have swam in the ocean, but I don't remember.

Ocean. Seagulls. Clouds.

I might not know the day, but I remember was a beautiful.

So dinner at the pier was perfect.

As we made our way toward through the crowd.

I caught my first glimpse of the water with the sun setting

the blues and greens

with silvery white billowing clouds and shades of peach and pink in the sky.

It was just what a sunset should be.

Having my lifelong guardian angel with me

to experience the view filled me with joy beyond compare.

Everyone disappeared and it was just me and you.

For that brief few minutes.

I need more.

I love you. [Susan] I love you.

Getting us all together in one spot, I don't know

if I will get this choice opportunity ever again.

And if this, come here for a reason [sic] I would say it's that we each learn that

adversity is what you make it.

What are you going to do with it?

Are you going to sit down and let it swallow you?

Are you gonna put one foot in front of other with the help of your family?

And I know I can lean on you each and every one of you.

[archive video sounds]

Oh! It's coming, isn’t it? Any second!

I didn't forget my drink.

[thunder in background]

Here it comes.

You see the rain down there?

Going, going, faster.

[building piano theme music/ crashing waves in background]

[archive video sound]

This isn’t about me.

This is so deeper than Susan.

Susan is nothing.

And, if I'm not here mortally, I hope my experience you

share it with someone else so that you can say, oh, I know all about that.

I met this chick

and she never shut up.