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- See, now it's recording,
see the little thing up there. ♪ Da da da
♪ Da da da da da dum - Sing a song for me.
♪ Ba da da da da da da dum da
♪ Tsch tsch tsch tsch
♪ Always look at the bright side of life ♪
♪ Ba doo da doo doo doo doo doo doo doo ♪
♪ Always look at the bright side of life ♪
♪ Ba doo da doo da doo da doo
♪ When your brain is poured out unto your ear ♪
♪ It's about time to
Anybody, anybody?
Stop the cheer, no, that's not good.
♪ It's about time to say goodbye dear ♪
[sniffling]
I'm ready to take a break.
- Okay. [sighs]
- Just do a documentary. wewere trying to figure out what?
- That's right. - What do we wanna say?
- We wanna say what we're doing.
- Oh good. - Go ahead, "We"-
say something. - All right, so I'm Camila.
- And I'm Linda.
- We are leaving today for our honeymoon across the country.
We're heading for the West Coast and we just,
let's see, we got married in Northhampton on Saturday,
two days-- - On the Smith College Campus.
- Campus, accompanies by Linda's cousin Susie
and my son, Jeffrey, and our granddaughter, Sparrow,
were observing via Skype.
- There are the rings.
- Until we find something that we like a little bit better.
- Hard to imagine, but there you have it.
- And we're starting our West Coast trip.
- We're starting our West Coast trip.
- All right, bye.
- Goodbye.
- Bye now.
- Help. [chuckling]
[car engine rumbling]
[gentle acoustic music]
- Super. [indicator clicking]
Camila is our driver today.
And I'm up here in the copilot seat, it's hard work.
We're roughing it, that's right.
Camila just mentioned
I should be more careful with my panning
but this is gonna be a nauseating film anyway
so we're not sure we care about the panning.
So there you have it.
[acoustic guitar music]
- This is Linda Folley.
Funny, bright, 50 years young,
off to see America
with her newlywed, Camila.
I wouldn't meet them until three years later,
in the summer of 2013.
[birds twittering]
We had no plan, no greater vision.
Our only objective was to capture what we could
of Linda before she was taken from us.
- Hi cutie.
- Hi.
- Whatcha doing?
- I though I'd read a little bit.
- Oh?
- Feels a little sacrilegious with all this scenery here.
I feel like I should just be looking out
the windows the whole time, or going outside.
- But it's cold and windy outside.
- It's very, very cold outside.
Especially if you're wearing shorts.
[laughing]
I suppose I could put on real pants.
- The video we're seeing was shot
when she was 50 years old.
When Linda was 52 years old,
she was diagnosed with early onset Alzheimer's disease.
Alzheimer's is the most common form of dementia,
with over 50 million cases worldwide.
In roughly 5% of these cases,
the patient is younger than 70 years old.
- I'll tell you what I tell medical students.
If you want to understand dementia,
here's what you remember.
Dementia is the gradual irreversible loss
of previously attained cognitive function.
Alzheimer's is one type of that,
but that's the definition of dementia.
- My name is Jake and I'm a filmmaker
from Linda and Camila's hometown of Ithaca, New York.
I was referred by a mutual friend, Liza Breslaw,
who had known me from a toddler.
Liza also knew that I'd been raised by two lesbians
and would not be shy to that family dynamic.
What I didn't know, until Linda told me,
is that she too had known me as a baby.
She and my mother, Ellen, had played on
the same team in the local softball league for years.
The league had been one of many social safe havens
for Ithaca's LGBT community and their families
in the '80s and '90s.
When I first sat down with the two of them,
I knew almost nothing about Alzheimer's.
What I knew was that Camila was devastated
at the thought of losing her new true love,
and that they both believed,
that by inviting me into their home and their lives,
there was hope yet of preservingLinda and her identity.
I would soon learn that in addition
to her athletic ingenuity, Linda was also
an intellectual powerhouse.
- Every time I sat down with Linda,
I learned something fascinating that she had done
with her life, from being a computer programmer
to flying a plane, worked on DNA research
with yeast cells, and I could find out something more
about this woman every time I'd sit down
to have a conversation with her.
- Linda had received her bachelor's from
where she became the first female conductor
of the Brown Band.
She graduated Magna Cum Laude before attending
the University of Colorado,
where she received a PhD inmolecular and cellular biology.
She later took an interest in browser-based code writing
from which she earned her impressive living.
- Linda was exceptionally good at that.
- Yes.
- She scored, I think she, if I'm remembering right,
in the 98th percentile for analytical skills.
- Yeah. - And she said,
"Just so you know, that means 98% the population is
"less analytical than I am."
It's like yeah, I can see that.
- By the time we met in August of 2013,
Linda had stopped working all together.
Once a visionary in a new technical field,
Linda's prowess for coding had been stolen by Alzheimer's.
- That, again, speaks to Linda's integrity though
because I remember talking to her
and she would say, "You know, I worked on this all night
"and it shouldn't have taken me that long.
"I can't bill them for eight hours of work for something
"that should've only taken me three hours to do."
- Camila, who'd worked almost 20 years in
the county as a registered nurse, had recently made
the decision to retire to take care of Linda.
- I'm very grateful to Camila and very-
I feel very happy that she was in Linda's life
because it could have been really different.
Because not everybody else would have been caring
and really self-sacrificing to make it -
the time that Linda had - to be Linda's time.
- I decided I wanted to conduct separate interviews.
Each were to prepare a few questions they'd like
to ask the other.
Some of their questions were fun and light,
while some were heavier, in recognition
of the limited time we had available.
I, of course, prepared my own.
Okay Linda, I think an easy starter question.
- Okay.
- So how did you meet Camila?
- Oh, how did I meet Camila?
That's one of those things that she would have
to give me a hint because I know I'm supposed
to know it totally.
But I don't.
- Okay.
- I'm not remembering it now.
- Oh gosh, I think I met Linda at church,
the Unitarian Universalist's Society.
And so we were friends and acquaintances from Coffee Hour
and from the community, before we got together.
That's where we met.
- Yeah, I rely a lot on Camila answering questions for me,
at this point, I do.
Give me a minute to think.
- Hi, Lin.
- Hey, honey.
[birds chirping]
[gentle acoustic music]
♪ Come sing a song with me
- Well, it could have been at the Unitarian Church
but I'm not sure. [sighs]
♪ Our love is here to stay
[Linda sighs]
- Oh, this is terrible because I don't remember.
[sobbing] I don't remember.
And it's like it's in there but I don't have any tab to
pull it out of the file drawer.
You'll have to ask her, she'll know all of it.
[sniffling]
I'm sorry.
- No, don't be sorry.
[gentle piano music]
- So here we are, go ahead, honey.
- It's 6:00 a.m. and we just crossed
from Illinois into Iowa, we're at the Visitor's Center
which of course doesn't open 'til 8:30.
- And what is that behind us?
- And why are we happy that we're in Iowa?
- We're already married, but it's great to be supported.
- [laughs] It is.
- All right. - Okay.
- Buh-bye.
- I was very lucky to have met Linda Folley shortly after
I moved here to Ithaca, and...
she was a very passionate person,
a very sexy woman.
She really deserved to have a wonderful partner.
So I guess Camila came into her life,
and from my vantage point,
I was like a doubting older sister.
Like okay, prove to me that you actually are good
for this person and that you love them
and that you'd want them.
- When I first heard that my mom was getting together
with Linda, I wanted to be upset.
I didn't want to like her.
I didn't know who this person was,
I didn't know anything about her.
- Linda came into my family instantly.
It didn't take very long.
My mom and her got together and it was the real deal,
but I didn't ever really know my mom was a lesbian.
It wasn't really explained to me.
I got the idea pretty quick, but I also,
she did point out that she hadn't met Linda yet,
she hadn't met the right person yet.
- She was so in love with Linda
and Linda was so in love with her, it was like instant.
I thought, "You've done it!"
This is the right person.
She's got the right amount of smarts for you,
she's got the right amount of empathy for the world.
- My mother saw her for what she was,
just an amazing human being...
and they saw each other.
That was the shock for me, was that...
that it seemed so good.
[people chattering]
- Oh, we have to get Margaret in this.
Hey, Margaret. - Hi, sweetheart.
- Hello, hello - How about like this?
[laughing]
- My mommies.
- It never failed to amaze me how she just embraced us
you know, with such kindness and respect.
- She just welcomed us in like we were family,
pretty much right away.
That kind of stuff takes time but
it was never any question as far as, okay,
"I don't know about your kids"
kind of thing, you know?
We were right up there like right away.
She was really good to us.
- I just think they're great.
I love having fresh, smart brains
who are responsible, and loving, and energetic,
and it is really cool to be a grandmother
because I didn't think I'd have that either.
- When we moved to town, Melody and I got jobs and
Linda, she rose to the occasion.
She took care of our family.
This was really thrust upon her,
like, "Now you have grandchildren."
And she embraced it! And she...
She was an incredible grandma.
- I think I see the number eight.
Do you see the number eight, Sparrow?
- Yeah.
- Where is it?
- Right there.
Right there, draw that figure 8.
- What's that red thing?
- I was looking forward to standing next to Zinnia
and having her tower over me.
[laughing]
- She will, and Sparrow will tower
over Zinnia, probably. - Yeah.
I wanted to knock on Zinnia's knee to say, "Hello?"
Hello, it's Nana.
I just wanted to say a few words
to my favorite granddaughters.
I love you guys.
I love how smart you are, how sweet you are.
You're gonna be wonderful citizens of the world.
And, um, let's see...
the one thing that I want to mention to you two,
although you might already know it,
is that I have a disease called Alzheimer's.
- We were actually sitting right at this table here.
Camila said, "Linda wants to tell you something."
and it was so strange to have her say that
because Linda never hesitated to tell me anything.
I was really not prepared for what they said.
Linda said that she's been having all these issues
with memory and trying to find the right words.
- Well, in 2008 when Jeff and Mel were getting married
and my mom and Linda visited Portland,
Linda got lost out on the train,
getting back to the hotel.
She went around the block and
she couldn't find the hotel again.
- And at the time they bothsaid, well it hasn't been named,
so it wasn't named, it wasn't Alzheimer's,
we weren't talking about that,
we were talking about cognition issues.
- I was actually told about her diagnosis before
I detected it socially.
It's really evidence of a person with
a huge reservoir of mental capacity.
So because she was so acutely attuned to her own mind,
she'd sensed that something was wrong
and had gotten a diagnosis before I, as a friend,
really was aware that anything was amiss.
- She was always so good at keeping up
with conversation and giving that impression
that everything was really going well
and then she'd forget.
She'd forget when she came home,
who she had been talking with or where they'd been.
- I remember one time we were here, right here,
and we were talking about something
and then we went into the living room
and she didn't remember what had been said right here.
That was really shocking to me.
- She would lose her train of thought
and she'd start to getfrustrated about not being able
to connect the wires again.
- What were your grandparents' names?
- Martha and Clarence. - Clarence, Clarence.
- That's right the daughters of, the offspring of...
I want my brain back now.
[Linda groaning]
- You can't control what you forget.
I do get that, I know sometimes I pretend
that I don't. - Can you control
what you forget? [laughing]
- No. [laughing] - Well then,
so I'm normal. - Exactly.
- It's just I do it a higher frequency.
[laughing]
And with a more annoying approach.
- Yes.
- You know, you're just like me.
Thanks, uh-oh, we're in trouble then.
We're so screwed, oh my god.
[laughing]
We are so screwed.
- Oh dear.
- My maternal grandmother had Alzheimer's
and died of it.
I don't think she had any kind of special Alzheimer's,
just regular, run-of-the-mill Alzheimer's.
She was, I think, 93 or 94 when she died
so maybe the next day she would have died
from something else but, [laughs]
in her case, she suffered with it for a while
and I saw her suffering.
The problem with me, which she didn't have,
is that I'm really young.
- Five years ago when Linda started losing her memory
at around 48, she was way too young for any studies.
- Well she was 93 when she died.
And I'd tell ya how old I am if I could remember.
I think I'm...
- For the MCI studies, she was too young for those.
They often started at- wanted people who were 55
and she was 48, or 50 even,
she was even too young for the ones for 50.
But what's happened in the last few years is that
the researchers now are doing more research
for people with MCI and are taking people at younger ages
because, hello, they see the benefit
of preventive strategies for folks who are young,
having early memory loss.
- I think I'm 53.
[sighs]
So that'll be a long time tobe physically super healthy and
have a brain made out of marshmallow cream.
And part of it, I won't even know what's happening,
but Camila will be possibly bearing the brunt.
And that does not make me happy at all.
She already is, actually.
Hi honey, it's Linda.
We have... um...
I didn't find any extra radio-
[smoke detector beeps]
ugh- there it is...
batteries for the... whatever the thing
is that beeps all the time, you know,
the little square batteries to go into...
Uh...f-f-f-f-f-
for whatever they are, like, uh...
Oh shit.
[sighs]
I don't know, the ones that we use for the,
I don't know, anyway, they're little transistor ones,
I think, the-
[smoke detector beeps]
and, um...
[laughing] if you could pick up a bag of those,
that would be great.
I'm sorry, I can't remember more than
that 'cause there was something else I had to say.
I'm so sorry, honey.
Anyway, batteries... oh shit.
I'm sorry honey, you can call me on
the house phone if you-
[smoke detector beeps]
want to, except it's, as I said, draining, okay?
Bye, honey.
[receiver clicks]
You haven't lived with a boggled mind inside you.
But you've heard some of it,
some real stupid shit come out of my mouth, so...
[laughing]
- I've lived with a boggled mind outside me.
[laughing]
- And the problem is, when I'm not boggled,
I get really pissed off sometimes because people
who are genuinely trying to help me
and make me feel good and do things for me
but don't understand what I'm asking them to do or...
Too helpful? - That's like
a different hell.
[laughing and coughing] Yeah.
'Cause I've always wanted to be independent.
"I want to do it myself."
[laughing]
Please, please, please, I want to do it myself.
- Excellent.
- Gently, gently.
[chuckle]
And yes we're getting rid of the evidence.
[laughing]
- The aroma.
- The evidence, aroma-
Gracie? Are you the star of the show?
- She is, she made it all possible.
[laughing]
- She got in the van and it was like wa-hoo!
- How does she keep her ass so clean?
[door slams]
- I'm calling Lin to make sure she's got her phone.
- Oh, good idea.
- I hear it, it's here somewhere.
Okay, we're good.
- Bye.
- Bye!
[engine rumbling]
- Apparently they think I can't drive anymore
if I can't remember stuff.
It's really stupid. [laughs]
How can they think that?
But the thing is I could be a great driver
but if I screw up one time,
they'll say, "It was her Alzheimer's,
"She's at fault," and then I'd be toast
so we're already past that point.
- She did once get lost driving here.
[gentle piano music]
And that was, I think, that was a terrible blow
to her when she could no longer drive the car
because that really made her
so dependent and Linda was anything
but dependent on people, completely independent.
[gentle piano music]
- She really needed and wanted to do things on her own.
It was really hard to to honor that sometimes
because you just want to help somebody, but they don't-
she did not want to be cared for in that way.
She didn't want to be, as she would say,
a burden or something that somebody had
to look after like that.
- What happens is with the diagnosis,
in American culture, everything about you
gets put under that cognitive microscope.
- It's just sort of dripping away,
and it doesn't discriminate between what time
is dinner or when does the plane leave
or where did I put my toothbrush, you
- Every hesitation, every bit of forgetfulness,
every question- "Did I turnthe light off in the bathroom?"
Which for most people is not an important question.
Maybe you did, maybe you didn't, who cares?
But when a person is carrying the diagnosis,
the meaning of all these things changes in their life.
- How are you preparing for this next chapter?
This next chapter?
Meaning the imminent demise of Linda S. Folley?
- That could be it, I don't... like it's-
- The joyous resurrection of
Linda S. Folley. [laughing] - Yeah.
I mean it's... like, it's just a glass half-empty,
half-full thing, isn't it? I mean-
- It is.
'Cause what I'm asking is, I guess,
really, "How are you preparing for life after now?"
- Yeah...
Well, we just made changes to our house.
The house has always had the east wing.
We've done renovations to it so that when the
granddaughters visit, they have a good place to be.
And when we get even older, we can use
the very back room, not have to do steps or anything,
it'll all be on the first floor.
We're doing those types of things
that people do when walking or seeing is impaired
and then you want to go from room to room
without bruising yourself or falling over.
So it's all just sort of like the continuum.
She's preparing our continuum.
And now there are... how many babies in the cousin family?
There's Lulu, and...
uh-oh...
- Well, Martha's kids. - That's what I'm thinking.
Lulu... and-
- That's Susie's kids.
Oh right, Lulu is the only one on Martha's side?
- No, Martha has a little boy, Sam.
- Oh, Sam.
- Sam. - Lulu and Sam.
Sorry, I just can't remember it.
- It's okay.
- This is like turning into true crimes here.
- Susie has Lila and May.
- Thank you, honey.
- You're welcome.
- So that's a nice segue into the fact
that I wouldn't be here without Camila.
- Oh, honey.
- I would send way too much money
or too less money to my taxes.
I would not know day or night,
my bank account would be totally screwed up.
- Oh, sweetie.
- After I'd paid one bill seven times,
and I would be eating Cheerios for
the rest of my life without you. [sniffling]
So thank you for all that you do
that's work, and that's love. - You're welcome.
[sobbing]
- Because my brain is like a Cheerio,
it just goes 'round and 'round,
and there's nothing in it.
- And I remember saying to both of them.
I said, "Well, whatever happens, I'm here to the end."
I just didn't know that the end... you know.
they're both a lot younger than I am,
10 years and seven years younger.
I didn't think the end was gonna be the end.
♪ There'll be a change in the weather ♪
♪ Teardrops will fall
♪ The snow will be melting
♪ And that's the worst of all
[gentle acoustic music]
- In the winter of 2013, I moved out of New York
and settled in Los Angeles.
With most of my family still based in Ithaca,
I planned frequent visits so that
I might also check in with Linda and Camila.
- No, that's not what
they're wanting. - No, oh.
- It's something a little bit more, you know, sexual.
- Oh, okay.
[chickens clucking]
[Linda laughing]
- That's chicken for, "Do me."
- Okay, interesting.
- But nobody here has any lead in the pencil
so they're not gonna get it. - Right. [laughs]
- Poor chicks, yeah.
The following summer, it had become clear
that Linda's condition had worsened.
Because of this, the decision was made
to find a new home for their hens
as Linda could no longercontribute to their basic care.
Both her long and short-term memory continued to suffer.
She had gotten lost on more than one occasion on
the once familiar streets of our small town,
and was no longer allowed to leave
the house without her cellphone.
Despite this, I was surprised to learn
that the memories that remained untouched were
of her time on the softball field.
- If you watch a game with her,
she'd tell you all the things that that person is doing
and she liked the strategy of it,
she liked figuring out what people did,
she liked knowing this player was like this
and that play it was like that...
I learned a lot about that from her, and I also learned
why she liked to be part of a team.
- So we rallied her old teammates
and we put a game together.
[women chattering]
- Don't be short with me!
[upbeat acoustic music]
- So how was that for you?
- It was fun, it was great to see everybody.
Some people still had talent, some people didn't.
I wasn't looking at you, hon.
- I never had talent in softball, so.
[laughs]
- Doesn't Ellen like to hit right down this baseline?
[cheering and shouting]
- A lot of folks have talked about how smart Linda was
and that she was brilliant.
I mean, she was brilliant academically
but she was also just, she knew all that stuff
and she could make a decision in a split second.
- Where are you hitting, Linda?
- Linda? - What? Where am I hitting?
- She could still hit the ball just
as well as she ever did.
It was really just noticeable,
she wouldn't necessarily know where to run.
- Let the muscles do it.
[cheering]
- Yeah!
[shouting and cheering]
- Get back on base! - Stay on first!
- I was the base coach whoalways said, "Stay on the base,
"Stay on the base!" for the people who just
were new at it, or, you know...
And there I was, running right across it,
and then noticing, like,
"Wait! I'm not supposed to do that."
- I know, you'd get to the base
- It was impossible. - and then you would turn
around and walk off the field.
- But you know why? - [laughing] Get back on base!
- You're gonna go to second.
- Throughout the course of the few innings that we played,
because we don't want to overdo,
she'd started at shortstop.
And then she just was wandering into the grass
and then she was out in left field,
just running after the ball wherever it went.
[cheering]
[shouting]
- Stay there!
- Get her! Get her!
- Jesus Christ.
- Right here.
- I'm a fucking clown.
- Back to third, Linda, back to third.
- Yes'm.
Why do I have to go back to third?
- You know, they could've just put up
a billboard and said you're losing it.
- Oh, yeah. - That's the problem with it.
- I think people were having so much fun,
it was just part of the fun.
- One thing that people living with dementia often say
is that their diagnosis disconnects them from society,
that they become outcasts.
To be alone and unconnected,
those are really profound primordial human fears.
- People seemed to be there because of you.
This time it was to not take the game quite so seriously.
- That was my role?
[laughing] Quit crying over there,
get out of the dugout. Wipe off your tears.
[laughing]
- Yeah.
[laughing]
- So you know what we're doing tomorrow, right?
- Yeah. - Do you remember?
We're doing the train trip.
- Right.
- It's gonna be great. - Tomorrow we're starting
a train trip, we leave tomorrow night for Seattle,
Seattle to Portland, and we'll fly to San Francisco
and we'll take the train from San Francisco home.
It's about three and a half weeks.
With a week in San Francisco and a week in Seattle.
- Yeah, it's gonna be great. - It's gonna be fantastic.
Yeah. - It's gonna be great.
- We all knew I couldn't join them for all
of their various adventures and I had no desire
to impose on what sacred time they had remaining.
- ...my cellphone, let's see if I can do it.
Hello, here I am... - Because of this,
although at first resistant,
Camila bravely agreed to pick up
the reins where I could not
and do some shooting of her own.
- Anything for the camera?
- What?
- Any comments?
- [laughing] Excellent.
- I feel the same way.
[gentle acoustic music]
- We're riding in our train,
getting ready for our departure.
- Arrival to Chicago, departure from our...
You know, that's the weird thing about it,
in this case, Chicago.
- Ladies and gentlemen, just a little information,
for those who are leaving us...
- In Chicago! We just had pizza at a...
A bar, that sells Bud Light and Blue Moon,
and are watching the football game... Football?
Football game? - World Series.
- Duh. The World Series, start over.
- She made quite an effort to be present,
to be reliable, to be loving, even those
times when she was struggling to figure out
what the conversation was about.
And then there were those times when she was
everything she had ever been,
and her light was shining so bright.
- They're sometimes referred to as lucid intervals,
where a person living with Alzheimer's will
have some confluence of environment
and personal energy and experience that kind of
swings open a cognitive door that had been closed.
And that door swings open and you can have
a remarkably lucid conversation with someone who,
three hours later, may not remember your name.
- She could still have great moments and days
and can't remember what happened five minutes ago,
but you could totally go into all
the lyrics of your favorite song.
- We have a rousing crowd here consisting
of Camila, our photographer.
♪ Each night before you go to bed, my baby, ooh, ooh ♪
♪ Sing a little prayer for me, my baby, ha, ha ♪
♪ And then tell all the stars above, yeah ♪
♪ This is dedicated to the one I love ♪
♪ Life can never be exactly what we want it to be ♪
♪ I should be satisfied knowing you love me ♪
♪ There's just one thing I want you to do ♪
♪ Especially for me
♪ And it's something that everybody needs ♪
[music swells]
♪ Each night before you go to bed, my baby, ha, ha ♪
♪ Whisper a little prayer for me, my baby ♪
♪ Ooh, ooh
♪ And then tell all the stars above you ♪
♪ This is dedicated to the one I love ♪
- Happy anniversary, my dear
- Oh, thank you, honey.
[kissy noises]
Should I have a party?
- You know, it's an idea.
A dinner or something, yeah, if you want to.
- Have everyone wear black.
[chuckling]
[Linda laughing] - Purple, red.
- Purple-red?
- Purple or red.
I don't know, what do you think about that idea?
- I forget what the idea was...
Having a party.
Having a party?
- Party or something, a gathering, a dinner.
- Uh-huh, yeah we could do that, you know,
they have that game about...
You know, the dinner party and somebody gets shot.
[laughing]
- You're silly.
[gentle music]
[crowd chattering]
[cheering and clapping]
- Yeah!
[laughing]
[cheering and clapping]
[cheering and applauding]
[whistling]
[gentle orchestral music]
[gentle acoustic music]
[Linda singing] ♪ April, come she will
♪ When streams are ripe and swelled with rain ♪
♪ May, she will stay
♪ Resting in my arms again
♪ June she'll change her tune
♪ In restless walks she'll prowl the night ♪
♪ July, she will fly
♪ And give no warning to her flight ♪
♪ August, die she must
♪ The autumn winds blow chilly and cold ♪
♪ September, I remember
♪ A love once new has now grown old ♪
[water lapping]
- So a few weeks ago, I noticedthat the pond is very high.
At least two feet higher than it is now,
maybe three feet higher than it is now.
So I didn't know what happened.
Did the beavers- well, there are beavers here,
we noticed that because some trees are down
and bushes-- - Right, yeah,
right over there you can see-- - Clear, you can see
the clear area.
- That's a beaver sign. - So we didn't know why.
if it was the beavers had raised the level
or if that's-
- Yeah.
- That's the roof.
- Yes, but then on Sunday, we did some investigation
because the pond fell in a day, and so it's clear...
- It was hard some mornings.
You know, I'd make a pot of coffee and serve her a cup
and then she'd go to the cupboard
and look for a cup and look for the coffee to pour.
I'd say, "Oh, I got you a cup, it's right over here."
And then she'd be so grateful.
And then we'd do it again.
And she'd be grateful again.
And then we'd do it again.
I never tired of being there for her.
I was honored to be present in those challenging moments
because I knew that she was grateful,
even when she started to, her face would show some distress,
some discomfort that she was having a hard time.
I'd say, you know, "It's all right, we're here.
"No worries, no worries."
And I saw the joy come back.
- Hi, Sparrow.
Wanna say hi to my camera?
- Sparrow, say hi to her camera.
- Look at you, cutie curly locks.
- Hi. - How old are you now?
- Three.
- Would you like to sing "Clementine" for the camera?
♪ In a cavern, in a canyon
♪ Excavatin' for a mine
♪ There lived a miner, forty-niner ♪
♪ And his daughter, Clementine
- What's next?
- Sparrow was very much aware of Nana's troubles.
She just wanted to help her.
There was a time when it was kind of like oh,
"Nana forgets things, isn't that silly?"
And then there was a time when
it seemed like they might try to take advantage of it.
"Oh, Nana forgot that we can't watch TV right now."
or something like that, you know?
But they became aware, both of them,
pretty clearly that they needed
to take care of their grandma.
♪ I ate my kiddy's tooties
[child laughing]
♪ To watch her moan
♪ And I love my little Zinny
♪ When she's in purple, she's at home ♪
♪ Amen [choking] ♪
- Kids don't tell you stories
because they don't realize the significance of them.
You'll catch a little comment and then you have
to kind of implore them for it.
This past winter, the kids would spend
a lot of overnights at Nana and Bela's house.
So Zinnia had said something along the lines of,
"Oh, like when Nana is crying in the room
"and I show her to the bathroom."
I said, "Okay, do you want to tell me a story?"
She then relayed to me that she would wake up in
the middle of the night sometimes and Nana would
be standing in the room, which was right adjacent
to the restroom.
And Nana would walk from the back into
that middle room and just stand there.
On one or more occasions, Zinniawas awakened by her crying,
and I said, "Zinnia, what did you do?"
She said, "Well, I took her hand
"and said, 'It's okay, Nana,
"'do you need to go to the potty?'"
And she would lead her in there,
then waited on the other side of the door
to make sure that she got back to bed.
[child crying]
- Take a finger, take a finger.
There you go.
- There's your Nana's hand.
- That's right! Now we're linked.
[laughing]
Everything's gonna be okay.
You got a good grip on there, baby girl.
- Nana?
- What can I do for you, babe?
- I know you like my hairdo.
- I love it.
- I just got in the water and dunked my head down.
- Those curls are the real McCoy, yes they are.
- She loved those kids.
You know, and they love her still.
Are the kids aware now of what happened? I don't know.
I don't know.
[laughing] - Thank you for that.
Aw, you shouldn't have.
- Take a picture!
- I'm taking a picture right now.
That's gorgeous.
If I press this, will I get a still on top of it?
- I don't think so.
I don't think so either.
- I think the movie camera's running.
- I think the movie's gonna say it all anyway.
- If it's flashing,
is it flashing? - Can I be in the picture too?
- Sure. - No, it's not flashing.
- If it's not flashing, you must have turned it off then.
- I'm honored that sheprotected my children from that.
Because looking at the ages they are now,
they're seven and five, what would that mean?
- I hope that they will learn and come
to terms with it and that they'll continue
to love their grandma as much as they ever did.
She loved them and she wanted what was best for them.
[child crying]
- Oh, honey.
- Oh, what happened?
- Come here, sweetie. - She bit me.
- What? - She bit you?
- Uh-oh.
- Where did she bite you? - Do you see
it's flashing down here, Nana? - On your chest?
Did she bite you on the chest? - Oh dear.
Zinnia, that is not nice.
- That is really harsh.
- You have to apologize you to your sister.
Why would you do such a thing anyway?
That's not nice.
- Cry all you want, that's painful.
- Sorry, Sparrow. - Zinny,
that was not very nice.
- Sorry, Sparrow.
- Why did you do it?
- Yeah, why did you do that?
- Because I didn't want her to
be in the picture with me.
- Oh. - You could always tell me,
there's no reason to bite me.
- Exactly, next time say, "I don't want her
"to be in the picture with me.
"Can we take one with just me?"
You don't bite people for anything, honey.
[laughs]
[laughing]
[child singing]
- Do you forgive me? I love you.
- How about you ask her for her forgiveness?
[kiss]
- Nice going, Sparrow.
- Nice big sister, Sparrow.
Hello, it's Nana.
I just wanted to say a few words
to my favorite granddaughters.
I love you guys.
I love how smart you are, how sweet you are.
I think you'll make a great asset to
the human race, both of you.
And just remember that I love you very,
very, very, very much, very, very much.
And do the best you can with what you have
and see if you can make the world a better place.
Because I have Alzheimer's, well,
my body is very strong.
My arms, my legs, I can run, all that stuff.
I can talk, but I can't remember things in my brain.
And so it's just like I'm floating in air
and can't hang on to anything at all.
And it's like going into a dark room
and turning off all the lights.
So at some point soon I have chosen to
kill myself
because I don't want to live where
someone has to take real special care
for me, like almost a care
regimen that's like taking care of a baby.
But the baby doesn't knowanything about what's going on.
I don't want to even try to go down that path
because we have enough information to know that
it will not end well for me.
There are no things that can make it better,
at this point in time, in the world.
So at some point I'm gonna haveto just stop living my life
because I can't control any part of my life.
Be loving and caring to people and supporting them,
'cause not everybody is as lucky as we are, even now.
So be hopeful and do great things.
I know you will.
You already are doing them.
So keep up the great work.
I love you guys.
[gentle piano music]
[wind rushing through trees]
- Well, you know, white pines are great.
They're beautiful.
They did have grape vines all over them.
And they looked very sad about it.
[birds twittering]
And I wanted them to live.
Got myself up there somehow and whacked
off the grape vines, so that the white pine
wouldn't just wither and die as
it got all that light taken away from it
and all of its water bypassing it.
It was a work of love.
I was really thrilled that I could do it
so I was sort of riding high after I did it.
That's the result you get when you succeed,
saving a good old tree.
- My dominant emotion was surprise.
And because I've done so much work with
so many individuals living with Alzheimer's,
my next question was...
Was there some element of her condition
that was causing undue suffering?
Was she actually, in addition to dementia,
also suffering a major depression?
Which is very well known to happen.
And the correct answer is it's really not my business.
I'm a friend and whatever decision she arrived at,
it was made freely, that's the thing that's important to me.
If she had chosen to embrace the conversation with me,
I would have asked, "What do you fear most?"
[birds chirping]
- What are you most afraid of?
- I guess...
Anything that would interfere with
me dying when I'm dying.
If you're dying with Alzheimer's, I
to be saved for another 20 years in Alzheimer's.
Because I'm very young for it.
My physical body's gonna last a long time
and my brain is gonna be a rutabaga.
- Well, my name is Jens Wennberg
and I'm friends with Camila and Linda.
And I must say that yes, this is
the place where lots of things happened.
- I'm gonna go see
what Sparrow's doing,
what Miss Sparrow's doing.
- [whispers] Let's go see what Sparrow's doing.
Ooh, beautiful, Sparrow.
- You weren't supposed to look!
- I didn't look, I was just looking at you.
Tell you what, I'll just focus on you, look like this.
- You promise you
won't look at it? - I didn't look,
I didn't look.
- You promise?
- Yes.
- Good, no looking.
I'm not done coloring it.
- This is where Linda sat when she
took and drank the medicine.
I don't know where I met Linda.
We sort of became close friends in
a weird and wondrous way.
We have sort of the same quirky sense of humor
and so we connected that way.
I was asked by Linda to get together with her.
Camila said she couldn't participate in this.
She understood that Linda wanted to end her own life
and Camila said, "I can't participate.
"I love her too much I don't want her to do it
"and there's no way I'm gonna get involved."
And so it sort of fell on me to talk with her
and try to figure this out.
- Today's January 14th, 2016,
and Linda and I have been talking for
a long time about some really important stuff
like life and death and...
- My thoughts are that I don't want to just get worse,
worse, worse, worse, worse,
be a lump and waste the rest
of Camila's life taking care of me.
- I wanna talk you out of it, though.
I just can't get used to the idea of you not being around.
[gentle piano music]
[crying] It feels like it's too soon.
- I know, I agree.
[Camila sobbing]
- She knew all along that I wanted to take care of her
and felt capable of doing that
and that we had enough support of all kinds,
and the house was right, and we'd made the changes
in our house, specifically so we could live downstairs.
But then, of course, after Sandy Bem in 2015
it became a more frequent topic.
- In the wake of a suicide, typically,
families are devastated.
Today in Your Health, we look at an unusual suicide,
one that, according to family members,
actually made grieving easier.
NPR's Alix Spiegel reports.
- Five years ago, after doctors told her
that she had an irreversible brain disease
that would eventually steal her ability
to read, write and recognize the people she most loved,
Sandy Bem decided to kill herself.
Sandy was an unsentimental woman and strong-willed,
and for her, a life without books and
the ability to recognize people that she loved wasn't
a life that she wanted.
She and her husband, Daryl Bem,
had volunteered at a suicide hotline for years
and Sandy was a suicide therapist.
- My name is Daryl Bem and I'm now retired
but I was a professor of psychology at
until I retired in 2006.
My father had Alzheimer's disease and that was at
a time when even physiciansdidn't know that much about it.
By the time I met Linda and Camila,
I had already prepared this document.
And I had prepared that document because
of an article that had appeared about Sandy
and her disease and the decisionleading up to her death,
so I was getting phone calls and email messages
of people asking me questions, usually apologetically.
And I decided that, if there was that much interest,
then I should prepare, sort of, a brief document,
that would go into more detail than
the New York Times Magazine article did.
- Here's the artist.
- Hi, I'm Sparrow Lea Farraday - Tell us your name.
- and I'm seven-years-old, this is my masterpiece.
It's my grandmothers' backyard.
The swing, and the sun,
and a pine tree that I like,
and those are the deer footprints.
- Wow, it has lots of theelements of our backyard, Nana.
- That's really cool.
Nice observations and nice depictions.
- Exactly. - Do you know what
a depiction is?
A picture of something that you see.
- Thank you. - It might not
be exactly like the way the thing is
but it's a depiction of it.
- Many people didn't expect this.
I had people say, "I didn't know it was that bad."
And in my mind and in my heart I'm going
it's not that it was so bad, it's that it was still good.
It's that we still had time,
but you never have enough time.
But this whole time you're chasing...
When are we gonna run out of time?
When is it gonna be too late?
- The reason that it went from so bright
to just out is because the place between there
was not what Linda wanted at all
for herself or for anyone.
She did want that place to be defined.
- She didn't want to waste
the world's resources on keeping her alive.
She didn't want to be changed like a baby,
you know, like, have a diaper and be spoon-fed
and not even know she was eating or what she's eating.
- Some people are just barely alive, you know?
Whether it's in their soul or their health
or whatever it is, some people are just barely alive.
Linda was not one of those people.
She was very much alive, and wanted
to remain very much alive untilshe was not alive anymore.
That's what that is for me,
that's how I talk to myself about it.
- Someone who wants to take their own lives who
is suffering from dementia must act too soon,
you must take your life too soon,
that is while you still have a quality of life left
that you would not choose to terminate,
except that you have to do it while you still can.
- Because I was aware that she wanted to end her life,
it became clear to both of us that she needed
to experience what she couldn't do.
I mean, she could go get the mail and she could attempt
to fix things around the house but together we decided
that we ought to try having her suffer in
a way through what her disability was.
So I stopped doing stuff for her.
- Hi, Camila, it's Linda. Idon't know why it always happens
that when you leave the house, I cannot make
the sound system work.
I have it set for TV and I have it-
the speakers A and B, and...
power, and...
I don't know why every time you leave,
I don't know what the fuck to do to make the TV work!
Maybe you could give me a call.
There's no sound coming out of it
and I don't remember how to do it. [crying]
- I hated watching her suffer.
[Camila sobbing]
I hated watching her get frustrated.
But it felt necessary and fair and honest, you know?
It really was.
And she made me promise. She'd say, "Don't you dare."
"Don't you dare protect me too much or sabotage my plans."
I was aware I could sabotage her plans pretty easily
by distracting her or whatever, and... anyway.
Yeah, I took the high road instead.
- Brittany Maynard's 30th birthday is five weeks away
and she is not planning to see it.
We first reported last week on this young woman
with terminal cancer, her story is restarting
a national debate over medical aid in dying.
- After her diagnosis, she moved to Portland, Oregon,
one of five states where it is legal for doctors
to help terminally ill patients take their own lives.
- Oregon is the state with the longest history
of having a death with dignity law
that permits people to get a prescription for
a lethal dose that they administer to themselves.
But the law requires that two physicians be able
to certify that they will be dead from
the disease within six months
and that they are of sound mind,
and then they can get that prescription.
Someone with dementia could easily lose
the capacity to remember that they had planned
to take their lives, and more, not be able
to carry out the procedures, that under the law,
they have to carry out by themselves.
- Was I hesitant in jumping into this whole thing? No.
Which is interesting. This idea
that somebody would choose to end their own life
that wasn't outside.
What I did was observe.
We had a very specific list of things
to be done from what Daryl had written,
and they were in short declarative sentences.
The drug that Sandy used has the trade name
of Nembutal. It's sodium barbital.
It's a barbiturate that was used in
the 1950s to treat insomnia.
Which implies that if you use Nembutal
to take your own life,
you will necessarily die in your sleep.
And that's why it was the drug of choice
for the states that have death by dignity laws.
It's virtually used by all veterinarians
for humanely euthanizing animals.
It's illegal in the United States.
- Having the materials available would then give her
the choice, if and when she decided to do it.
Whereas, if she didn't get the materials at that time,
which was in September of 2014,
she wouldn't have the opportunity.
- There have now been 1,200 people in Oregon over
the years that have gotten the prescription for the drug,
but one third of those people never used it.
What Oregon reports is people are just so relieved
to know that this is now under their control
that they find they can get on with their lives.
- If she had waited until January of this year,
she wouldn't manage to write an email
to the gentleman in Mexico, she wouldn't have managed
to get her credit card numbers and so on.
She couldn't have done it herself.
And if she couldn't do it herself,
then it would require somebody to assist her,
which ends up, at whole, being an entirely different matter.
- Where was I?
- You said something about
this moment of lucidity or something.
- Yeah, I know that, that moment's passed.
[laughing]
You know, I love you a lot.
- I love you too. - And I know you are a nurse,
but you're a retired nurse so you don't have to nurse me.
- But people with Alzheimer's can,
even when they don't know who people are,
they could still have good days and joy
and enjoy a beautiful day or a beautiful sight.
- Right, that's true.
That's true.
We were doing this bizarre thing like looking
at work schedules and family schedules,
and we'd find these windows and say, "We're doing dinner,
"we're having lunch, we're doing a photo shoot..."
We're doing whatever we can with these times
that we're all together and then it would get
a little later on and I'd start to say,
"Well, I can give up thatshift, I can give up that shift,
"Jeff went down another shift,
"the kids are gonna stop doing this one activity."
- I got into the thing of realizing that I needed
to contact to see how she was doing.
And so I would get together and one of
the questions I would ask is, "Is it time?"
And she would say "No, it's not time."
- It's never gonna be the time.
It's never gonna feel like the right time.
It's not a dentist appointment, you know?
- The hardest part was leaving.
I could be here and I could talk
with Linda about all of this and I could be sane,
rational, help her, look at it in her way
and then I would get in the car
and I would head down the driveway
and I'd have to stop and cry.
That was my job was to be here for Linda,
and to take care of me and my issues elsewhere.
- The things I could do were help her say goodbye,
help her think about the end
and also not shield her from her disability
and her capabilities.
All of that went into, I think,
Linda finally coming to the decision
that she needed to do it.
- So line up for kisses.
Remember the good times.
Love people you just met.
Be kind to each other.
Hug the dog.
- Linda, at this point, had gone around
and said goodbyes to lots of people.
So there were those closures taking place.
It was the question of, "Okay, so... what day?
"When do you want to do it?"
The day before the thing that we have no word for,
we decided that we were all gonna have dinner as a family.
And as somebody who really feels
that food is an important part of ritual,
I was going, "What do you eat?"
And then I was just in charge of dessert.
Okay, I'm gonna make dessert and it's gonna be
the best thing I've ever made.
Linda has a sweet tooth,
I'm gonna make her something amazing,
something I've never made,
something I might never make again.
So I made this chocolate peanut butter tart.
And I meditated into that tart.
I slowed my entire existence down pressing the shell in
and of making the ganache and peanut butter mousse
and putting the peanuts on the top of it
and I just held this thing up and kind of carried
it around and it became this exact little microcosm
of my intention was in this little pie, you know?
And we went over for dinner and Camila
and Linda were all having Manhattans
and playing loud music and laughing and crying
in this very joyous, kind of, exuberant way.
And we walked into it, they were very happy to see us.
And we all kind of hung around,
the kids did some performances,they sang some songs.
♪ Ruby lips above the water
♪ Blowing bubbles soft and fine ♪
♪ But alas, I was no swimmer
♪ So I lost my Clementine
♪ Oh my darlin', oh my darlin'
♪ Oh my darlin', Clementine
♪ You were lost and gone forever ♪
♪ Dreadful sorry, Clementine
- People don't get to do that.
They don't get to see someone and say, like,
"This is gonna be the last time I see you."
You don't really get to do that.
You never know when that's gonna be
and there's a lot of fear there.
And then that disconnect can feel that much more dramatic.
"I never got to say goodbye."
I did get to say goodbye.
I felt like I was saying goodbye for years to Linda.
♪ There will be a change in the weather ♪
[somber music]
- It was like a mockingly beautiful day.
It's almost absurd how gorgeous it was.
It was the middle of March
and you're going, like, "What is this beautiful day?"
"Fuck you, beautiful day. You're not a beautiful day,
"but you are!" and all that...
- I was in the middle of a techrehearsal at the theater and
Camila had said that she wanted me to be there
and Linda said she wanted me to be there.
- They all said to me, "Well, you have a choice.
"You can decide to not be here.
"You can decide to be here and then leave
"or be here and then stay."
I just didn't think it would have been right
to be there and then leave. No way, not leave my mother.
- [sighs] It was all a little bit of a blur,
to tell you the truth.
I do know that one special connection that Jeffrey
and Linda had is that he makes very delicious breakfasts.
- Eggs Benedict.
I loved cooking for Linda, she was my best customer.
[laughs] And we had some phenomenal meals here,
sitting at that bar over there at the island.
- Later in the morning, Lin and I decided to take off.
The house felt very heavy, just,
the air felt heavy.
Everything was heavy that day.
So we had to get out of dodge.
And the two of us, just alone, we decided
to take Roada, our van, to go for a drive.
So we went to Stewart Park and sat in Roada
and talked about our lives and Linda gave me lots
of advice about how I was gonna be okay,
and I had a great family
and a wonderful community of friends.
A lot of living to do, basically,
she gave me a big pep talk.
- She was hoping that you might just be able
to give her some general advice
that she could just look to throughout the years.
- Wow.
- What do you want to tell the kids at home?
- [laughs] Just really, having a great time,
wish you were here.
- Right.
- [laughs] That's probably not the best thing
to send from the grave, is it?
- I think so.
- Okay.
- Wow. See? She knows how to rescue me from anything.
- Yeah.
[laughing]
- She's never let me down.
- She's gonna kick herself later, though,
when she knows she was this close
to some solid advice. - To knowing the pearl--
- And then she buried it with the lunch plan.
- Aww.
[laughing]
You think?
- Uh-huh.
- Yeah, she will.
I already have the answer.
Turn it on. - Okay, okay.
- W...
W...
L...
D.
What would Linda do?
[laughing]
- What would Linda do?
- Try to see the broad picture and then focus in.
If it's an issue about humans and human nature,
it's always give them the benefit of the doubt.
The other thing I would say is that she
and I are very different people
and she is incredibly good at so many things,
and helpful, and pleasant, and courteous
[laughing] in ways that I'm not sure I ever have been.
So I think that my answer would be:
You have this stuff that counts because you know how
to deal with the feelings of the heart.
And if somebody wants to know how to put
a piece of board onto something else,
there's tons of people who can do that with you
and you can be helped by them. [sniffles]
But if it's a feeling of the heart or if someone needs help
that way, you're always on the spot with great advice.
So don't sell yourself short.
[gentle acoustic music]
- I came in and everybody was kind of sitting around.
Who knew what that day was gonna be like?
I mean, there was no rehearsal for this.
Nobody could say, "Oh, well the last time I went
"to an event like this." I meanthis was brand new territory
- This was some Lewis and Clark shit.
There's no preparing for that kind of experience,
sitting down in a room full of people who you care about
and knowing that one of you is gonna die.
- After a few hours I guess Jens
and Nancy came by and I remember not wanting
to see you show up.
- Oh, I can imagine, yeah. - Yeah, that was really hard.
- In that afternoon I was like okay, it's really happening.
Okay, Jens just got here, that means the ball's rolling.
- Nancy and I came in about four o'clock
and she immediately was up and ready to go.
- And as soon as Jens and Nancy came in,
Linda jumped up and all of us got on like high alert.
- I mean, that was just so brave to just be like okay,
like I'm, and we could do this now, I'm ready.
But then it was a challenge of like waiting
for the right time and nobody wanting
to say, "It's getting late," or, you know,
"Okay, how about now?" Like nobody.
- I'm really grateful for that time.
I'm grateful for all the time.
But those were the longest minutes of my life.
I mean, there were seconds of silence that felt like hours.
- Boy, I spent a good deal of time staring
at this stove that day.
[laughs]
The lamp was elsewhere and thatrectangle occupied my field
of vision for pretty much the whole day.
Like, I stared in that hole.
I examined its angles and where the bricks were
and... you know, I needed something.
- So we were all listening to Linda sing.
It wasn't really much talking going on, I mean...
- It's like looking at each other
and smiling and we were silent sometimes
and then we played some music
and we sang together and then we were silent.
- Such an otherworldly experience
that nothing could have prepared me for,
or any of us, and here we are going through it together,
wading through these uncharted waters,
making it up as we go along.
Save for Linda who had her plan.
And she was gonna stick to it and we were all there
to support her and to show her that however hard it was,
that we love her enough to let her go through with it.
- And then there was this really Linda moment.
- She was sitting there and she threw her hands back
and threw her head back on the sofa.
- And she said, "I just want everyone
"to know that this whole thing sucks."
- And then she came back down and she turned
to me and said, "Let's go."
- After that, everybody just told her
how much they loved her, how much it meant
to them to be here, to have known her, to care for her.
- The next thing we had to do was
to fix her gin and tonic which took a while.
Because she couldn't remember how to make a gin and tonic.
- Aurelia moved to be on the other side of
Camila, and Camila was hyperventilating and...
- She got out a coffee cup and a glass,
she was supposed to get two glasses
but she couldn't find them.
She got those two out of the dishwasher.
And in the coffee cup she made herself a gin and tonic.
- The two of them, Jens and Linda, went into the room.
- She knew exactly what to do and she got
the two bottles of medicine,
popped the little rubber caps out
and poured the two bottles into a glass.
I asked her, "Do you want to do this?"
And she said, "Let's get on with it."
That was not said for her, I knew what she wanted.
That was said for me.
I spent my whole life learning enough
and getting things together so that I could do that.
Took everything I've ever learned for myself
to be there for Linda.
- Well, you know, I just thought of something
else I could say to Camila.
You can still live your life and just, you know...
Don't waste the time that you have.
[sniffling]
I guess that's it.
You think that's clear?
- Okay.
[birds chirping]
- I don't know what she'll do with that information.
- Well...
- She has it.
Yeah, don't waste a lot of money if I'm on my way out.
It'd be impressive if I died right now,
that would be impressive. [laughs]
But I'm not ready to do it so forget about it, man.
- Forget about it. - I'm not gonna get
let you film me dying.
- No.
- I took Linda's hand, we walked into the bedroom
and she lay down on the bed, on her back,
and she said, "I'm gonna need my eye mask."
Because it was kind of bright in the bedroom.
I knew she wouldn't need them.
So I just put my hands over her eyes and said,
"Just close your eyes, go to sleep, honey."
- I mean, nobody knew what to do except we were waiting.
I said to Camila, I felt terror.
Like, such fear, because it was so unknown.
- It got to be about dinnertime and the phone rang.
And the kids were eating, I don't recall if I was,
I kind of walked around in a fog for most of that day.
I got off the phone and let the kids finish dinner.
"Okay, well, let's go brush our teeth
"and put on our pajamas,"
and I'm like losing it a little bit.
I pulled them into the bedroom, and
"I have something I have to tell you. It's about Nana."
- Go to sleep, Nana, go to sleep.
Ding-a-ling-a-ling! Ding-a-ling-a-ling!
- Morning!
- That was the scariest thing I've ever had
to do was tell them what happened.
I felt like I was taking her away from them.
Sparrow started crying and wanted to know why
and what was going on, and Zinnia just kind
of said, "So, forever, she's gone?"
And I said, "Yes, you know, she's dead."
And she kind of hugged me a little bit
and went over to Sparrow and then it was [snaps],
nothing was different again.
And then Sparrow got mad at her for not crying.
And that was really hard to watch Sparrow yelling
at her little sister, "You don't care,
"you don't seem to care."
She just wasn't processing it the same way.
- She might be in front of you right now.
- Oh yeah?
That's a really sweet thought.
- She's a ghost?
- Hm.
- Sparrow read the obituary.
She's smart as get out and understands what words mean.
I didn't notice she was doing it.
And there's a lot of candid information in there.
But she read that obituary and she just got quiet
and sad and reacted the way anyone would
to an obituary of someone that they loved deeply.
She didn't ask any questions about it but
I can't imagine that she didn't take that piece
of information and then understand what
Now, what's cool about that is that it's because
it doesn't mean anything bad to her at this point.
She has not been socialized, as a seven-year-old,
to think that is something that you don't do,
you don't take your own life.
- Rachel and my mom and my sister,
they were talking about what this was
and they came up with that fantastic way
It was a radical act of love.
I was so impressed because it immediately communicated
to me what this meant to all of us, you know?
This was an astounding, courageous thing to do,
to say, "I'm gonna stand up in the face of this disease
"which is going to rob me of who I am
"and I'm not gonna let it take me away."
Linda didn't look afraid.
- She had that one moment when she said
this whole thing sucks.
I didn't feel any remorse, doubt.
She was resigned and she was gonna do it this way
and she was gonna take care of us as she was doing it too.
But I think all of us are kind
of bound together in that group,
all of us who were there that day,
because we experienced something that
very few people have ever experience.
- How much longer would it have gone? Who knows?
If your body is that young and able
and your brain is thatdeveloped and that intelligent,
what would that have looked like?
- I've always thought that death was
a very big exhalation.
An actual release. I believe that.
So then why shouldn't this end of life be
that when a person wants it?
- She didn't want to become some different person,
struggling to find herself, dayto day and minute to minute.
She chose to die.
But if she was gonna die, and we're all gonna die,
she was gonna die as Linda,
and to help us keep her in our hearts as that person.
I respect her so much for that.
[heavy sigh]
- Anything else you want to add?
- I love you.
- I love you,
I love you, I love you.
- I love you, I love you, I love you.
Do you remember that I said when we first got together,
when we fell in love, that...
no matter how much time we had together...
- It wouldn't be enough.
- It wouldn't be enough, that's right.
[sobbing]
I did not know it would be so true.
- Yeah.
[weeping]
- But I meant it.
And it's still true.
[sniffling]
[peaceful acoustic music]
[Linda singing] ♪ If today was not a crooked highway ♪
♪ If tonight was not a crooked trail ♪
♪ If tomorrow wasn't such a long time ♪
♪ Then lonesome would mean nothing to you at all ♪
♪ If only my own true love was waiting ♪
♪ If I could only hear her heart a-softly poundin' ♪
♪ Yes and only if she was lyin' by me ♪
♪ Then I'd lie in my bed
♪ once again
♪ I can't see my reflection in the water ♪
♪ I can't speak the sounds that show no pain ♪
♪ I can't hear the echo of my footsteps ♪
♪ Or remember the sounds of my own name ♪
♪ Yes and only if my own true love was waiting ♪
♪ And if I could only hear her heart a-softly pounding ♪
♪ Yes and only if she was lying by me ♪
♪ Then I'd lie in my bed
♪ once again
♪ There's beauty in that silver singing river ♪
♪ There's beauty in that rainbow in the sky ♪
♪ But none of these and nothingelse can touch the beauty ♪
♪ That I remember in my true love's eyes ♪
♪ Yes and only if my own true love is waiting ♪
♪ If I could only hear her heart a-softly pounding ♪
♪ Yes and only if she was lying by me ♪
♪ Then I'd lie in my bed
♪ once again