GENTLE MUSIC
KNOCK AT DOOR
MUSIC CONTINUES
Good morning, Rats.
Move over. Move over. (LAUGHS)
Good morning. I want these
orange blankets when you die.
Yeah.
Can I have them?
No.
Why not?
(SPEAKS INDISTINCTLY)
Cos my hand's cold? Freezing?
Yes.
Right, what do you wanna wear?
What colour dress?
This one?
That one.
You want matching?
(GASPS) Yes.
Kimberley, or KJ, is in the late
stages of Huntington's disease,
a rare degenerative brain disorder
that has slowly eroded her mental
and physical abilities.
TV: We've got blue skies and
sunshine on the forecast...
Rachel also lives with Huntington's.
Six months ago she could
walk without help.
KJ and Rachel both live at
Te Ruru in Christchurch.
11 people live here,
and they all have Huntington's.
GENTLE MUSIC CONTINUES
(SPEAKS INDISTINCTLY)
Right, I really need you to
do one big sit-up for me
so I can get this on.
In its late stages, Huntington's has
been described as a combination
of Alzheimer's,
psychosis and Parkinson's.
And your arm. Keep sitting.
Keep sitting. Use all those
tummy muscles.
KJ and Rachel never get a rest from
their involuntary movements,
even while sleeping.
In here?
Yeah, just that one.
Huntington's is hereditary.
There is no cure.
Huntington's is a
very cruel disease.
Your child just disappears
before your eyes.
Her father and I weren't together,
um, and so I didn't find out until
Rachel was around about 15, 16.
I had had no contact with him
in all that time anyway.
Yeah, good.
That was really really scary
at the time. That was really
up— quite upsetting.
I had no knowledge of it. Things
were a bit rough there for a while.
Just hold your drink, thank you.
Thank you.
See ya.
Kimberley inherited it from
her biological father.
Make-up? Can I make you
look like a prossie today?
Yes.
She decided to be tested and found
out just before her 21st birthday
that she did carry the gene,
and we knew that she would be
symptomatic in her late 20s
or early 30s.
This... This is good.
< You wanna look like a drag queen?
I always talked about it to
Kimberley every now and then that—
that this disease was in her family
and, uh, that she might in— inherit
it herself.
So when she got to the age where she
thought, 'I might wanna settle down
and have children
'or I don't know what to do,' she
decided to be tested so she could
make plans for her life.
Beautiful.
Beautiful.
< What perfume would you like, KJ?
(SPEAKS INDISTINCTLY)
She— She was incredible
that— that day.
I sort of lost it a bit, and
she said, you know, 'We've
gotta make it work, Mum.'
Where to now?
Mirror.
To the mirror?
Don't crack it this morning.
That is terrible. Terrible.
Foot in.
Yeah.
Hands in.
All right, here we go.
Ooh.
B-E-A. Don't crack it.
(SPEAKS INDISTINCTLY)
All done.
Bea— Beautiful.
Yeah, that's right.
She is enjoying herself.
She's happy.
I think as long as they're happy
in life, then that's their
biggest goal accomplished.
INDISTINCT CONVERSATION
GENTLE PIANO MUSIC
DENISE: Round about 15, 16,
we went to a neurologist.
He basically said to Rachel and I,
'You can't do anything about it
until you're at least 18.'
That's as young as you can be to
have the test done. And the test
involves sort of a counselling,
um, psychological testing to
see whether you can handle
that information or not.
Rachel chose not to get
tested until she was 24.
After Kimberley got her test
results, she decided that she was
going to do everything she could
and pack as much into her
life in the early years,
because in later years she wouldn't
be able to do it. So she's been
a daredevil all— all her life,
loved all the adrenaline-junkie
stuff and all that.
< You OK?
She still is like that and still
wants to do all those things,
and we make those things
happen as often as we can.
TRANQUIL MUSIC
DENISE: Rachel sits out there on the
conservatory virtually from the time
she gets up,
so she's sitting out there sometimes
in her jammies with a jacket over
top.
WOMAN: What are you waiting
for at the moment?
No, it's not too hot.
DENISE: Just seeing her, a— just
a shadow of what she used to be.
She would be horrified at the
state of her hands, you know,
all cigarette marks on here.
She was beautifully groomed. She was
fussy about her hair and things like
that,
and now it's an argument to
get her to wash her hair.
Not her. It's not her, not
as I want to remember her.
When— When she's gone, I'll
remember how she used to be.
(SPEAKS INDISTINCTLY)
Yeah. Oh.
Here. Yeah.
OBJECT RATTLES >
Rachel got married at 28 to a
Microsoft executive whose job
took them all around the world.
DENISE: He's always still been
there. He's still travelling.
She goes, 'Where's Gabe at today?'
'Oh, he's in Korea or Singapore or
Seattle or whatever.'
He's a busy man,
but he's a lovely man.
He was going to show her the world
for as long as he possibly could,
and she was.
She was. India, um, the
Greek islands, the UK, Europe.
It was just wonderful to see her
living the life of a princess,
really.
POIGNANT PIANO MUSIC
DIANE: So, this is where I work. I—
I work at the Harewood Crematorium.
Death has been part of our daily
life for the last 20 years since
I've been in the industry.
So instead of worrying about it, we
have planned things with Kimberley.
You all right?
Good girl. You just about got
them all in there, haven't you?
So we'll put them here.
Aren't they lovely?
Eh?
So, KJ— So, who's going in here?
< Uh, Mum and Dad.
Mum and Dad, and who's
this special one for?
Me.
Who's it reserved for? >
Me.
For you. >
It is, isn't it?
< Yes.
So you're going to be between Nana
and Grandad and Mum and Dad.
That'd be good.
Cos you're the favourite.
That's right.
And what are you gonna
have on your stone?
(SPEAKS INDISTINCTLY)
'Ding, the bar's open.' Yes.
And died happy.
'And I died happy.' That's right.
'Ding, the bar's open.
And I died happy.'
So, are you sad that Nana's gone?
Yeah.
But what— what's Nana gonna do?
(SPEAKS INDISTINCTLY)
She's going to be waiting
for you, isn't she, eh?
Yeah.
We set this up after her grandmother
died so that she could come out each
week and visit her. It helps her.
She looks forward to it.
Even though she's not
able to say a lot,
she's still there, and I think
she's my rock as much as I'm hers.
POIGNANT MUSIC
BIRDS CHIRP
POIGNANT MUSIC CONTINUES
Hello, sweetheart.
Hello, Mum.
How are you?
How are you doing?
I'm good. Yeah.
Love you.
Love you.
< You sleep all right?
Yeah.
Not really?
You woke up early again?
Yeah.
You didn't sleep?
No.
So you watched the news all night?
Yeah.
OK.
Yeah.
So what's the most important thing
that's happening in the world
at the moment?
The election in the...
in the States?
Yes.
Who's gonna win?
Yeah, I agree.
She said she would never go into
care, but, um, there was no choice.
She didn't want to be here, so she
was breaking any rule she could.
She was climbing over the fence,
trying to go back to where she
used to live and... kill herself.
She was taken back or brought
back here to— with the police.
I mean, ugly, ugly to see your
daughter sort of screaming her lungs
out at 3 o'clock in the morning
with her hands cuffed behind and put
into the back of a police car.
And, um, yeah, it was
all really really hard.
GENTLE MUSIC
INDISTINCT CONVERSATION
(SPEAKS INDISTINCTLY)
You all right?
(SPEAKS INDISTINCTLY)
DIANE: Kimberley met Justin just
before she did her— her OE,
and she said to us the first week,
'Oh, I've met someone, and he's a
really nice guy.'
And Kimberley went off overseas, and
about a week before she got back,
he arrived in one night and he said,
'I've got something to ask you
both.'
And he asked us could he marry her.
Food...
Yeah, it's got chocolate chips
in it.
Mmm, mmm.
Yum.
I— I've been in Tuesdays
and Thursdays,
and then Saturdays...
afternoons KJ comes over home.
(SPEAKS INDISTINCTLY)
You kicking the pillow away?
DIANE: I said, 'Wow, really? Well,
before you ask Kimberley, I need
to tell you some things,
and him and I sat down and I
told him about Huntington's.
I told him all the worst things
about it and, uh— and we talked
for quite a few hours.
And we talked that Kimberley had
decided that she would not have
children,
because of this disease
so she didn't pass it on.
And, uh, he said he was fine with
all of that. He was— He just said,
'No, I still want to marry her,'
so we said, 'Well, if you want
to marry her and she agrees,
you've got our blessing.'
It was a very special day.
There wasn't a dry eye in the place,
because everyone knew about
Kimberley's, um, health.
They've been married 10 years now.
They still both love each other to
bits.
Justin has been absolutely
fantastic. He's a wonderful husband.
He has done as much for Kimberley
as he could all the way through.
He doesn't give up on her. He pushes
her to the limit to do things for
herself, which is really good.
We were so lucky that the night they
met that he, um, fell in love.
APPLAUSE
BIRDS CHIRP
Wait on. I'll shift that
over up here, all right?
Yeah, I adopted Rachel around
about 4, 4½, I think it was.
Can you get your hand down in
there and put it on the garden?
Just chuck it all over there.
That's the girl. All right?
We've always been reasonably close.
I sort of look forward to coming
and seeing her.
Spread it right round there. OK?
We had marigolds at Christmas-time.
Now we've got, um, pansies now at
this time of the year, so...
And they're pretty.
So we look forward to doing
it every— every year.
Yeah.
(LAUGHS)
LEAF BLOWER BUZZES
All right?
Yeah. (SPEAKS INDISTINCTLY)
Whoa, hey. All right there?
But we just hang out here in the
summer months, come out here for
coffee,
sitting in a chair, in the seats.
Like, we've had a few fall-overs.
You know, um, yeah, fell over in the
vege patch one day a while back
and, uh, in amongst the celery,
legs up. (LAUGHS)
Yeah.
But we— We live through it,
don't we?
Yeah, definitely. It's quite funny.
GENTLE PIANO MUSIC
You're gonna beat me, are you?
Yeah, yeah.
That sounds like fighting words.
(SPEAKS INDISTINCTLY) Beat you.
Won't— Won't say that.
Beat ya. (GRUNTS)
She's saying that she's
gonna beat me now.
(SPEAKS INDISTINCTLY)
Isn't it?
(GRUNTS)
There you go. Oh,
better get that box.
Oh, jump on the crab.
It is difficult to see someone that
you love go through those changes.
Um, the thing that I'm grateful for
is that she's not too aware of her
situation as it is now.
Yeah, definitely it is difficult to
go from having the best big sister
in the world
to really being on my own.
It's been quite difficult, and I
say that because our relationship's
dramatically changed over the years.
So we used to go out together. Um,
we'd go out shopping, and we'd go
to the movies,
and we spent a lot of time together
doing normal sisterly things.
And then for the last probably...
eight years, we haven't been able
to do that
because I suddenly become— well,
stepped into that caregiver sort
of role,
which, yeah, we can still do those
things, but it's just not the same.
Um, you know, it used to be that I'd
ring her up if I'd had a hard day
or having boy troubles or anything
like that, and she'd have a talk
to me about it.
And now, um, I— Yeah, I don't
have that person to talk to.
So in a way I said goodbye to
my sister a long time ago.
BEEPING
You do the X. You make him jump,
and I'll make him move. Ready?
'To see someone that I love
go through this, it's just
heartbreaking.
'I hate Huntington's disease.
I think it just needs to go
jump off a bridge. (LAUGHS)'
In all honesty, uh, yeah,
it destroys lives.
It destroys families,
and it's not fair.
The family are all grieving. Every
time they see her slip down a wee
bit more, they all get upset.
And, um, while I get upset, I try
not to show it, because I just
want to stay positive for her
and make it a positive experience
for her to get her through this
journey.
KJ and Rachel knew each other for
10 years before they arrived at
Te Ruru.
Yeah, the movies.
DENISE: Diane's coming shortly.
Her daughter is Kimberley.
And, uh, we've been friends
10, 12 years at least.
From my point of view,
it's really good to have Diane
because we can talk about different
stages that the girls are going
through.
We can talk about our feelings.
We both carry guilt.
Great to have someone who knows
exactly what it's like to see their
daughter go through all of this.
Hi.
Hi. How are you?
I'm good. How are you?
I'm good.
(GROANS) A cup of tea,
coffee or wine?
Oh. Oh, I'll have a wine.
LAUGHS: OK.
Rachel's sort of a bit
stroppy at the moment.
Is she?
Don't know what's going on with her.
Well, Kimberley was going
through some patches of, um,
being quite, I suppose you'd call
it, moody. But what she'd do is
just go quiet.
Cos Rachel and Kimberley are
at similar stages, I think,
in their journey.
How are you feeling about watching
Rachel slipping away like she is
and deteriorating? >
Sad. Incredibly sad now because,
yeah, it's not far away.
It's not far away.
But even though you sort of want
that struggle for her to end,
and, um, yeah.
One part of you wants
to keep her with you. >
It's too—
Exactly, but I also recognise
she's not my Rachel.
Mm. >
I remember when we first met...
< Mm.
...and one of the first
things I said to you was,
'Denise, I don't know. If I was
sitting on Riccarton Rd with
Kimberley beside me
'and a bus was coming along and she
went to step out, would I pull her
back or push her?'
< (CHUCKLES)
And I remember looking at you,
thinking I wonder if you're going to
be shocked, and what did you say?
(CHUCKLES) I said exactly the same
thing. I thought it and thought it,
yes.
Sad to see your daughter,
though, like—
It is.
...like they are now, isn't it?
Yeah, it is.
Really really sad, eh?
Mm. Here's to the girls.
Yeah.
Mm.
If I'd known more, I don't know if
I would have had Kimberley, but I
don't regret one minute of it.
Even though I'm not the parent
that passed that gene on to her,
I— I do have a lot of guilt that
I brought her into this world.
POIGNANT MUSIC
(SPEAKS INDISTINCTLY)
Have you seen KJ?
(SPEAKS INDISTINCTLY)
Anyone seen KJ?
I'm here. I'm here.
Where? I can't hear you.
Here.
I am the ghost with the...
(SPEAKS INDISTINCTLY)
Do you want me just to
tip you right back?
Yeah.
Bye, KJ!
Again. KJ, what happens when
we— when we go in the van?
(SHOUTS)
What happens if someone
tries to steal you?
(SHOUTS)
And then?
Get the...
DNA. Why do you get DNA?
(SPEAKS INDISTINCTLY)
Cos then they know who
committed the crime.
You did.
It wasn't me. Why would I steal you?
(SPEAKS INDISTINCTLY)
I have to bring you back home again.
Your mum would cry if someone
stole you, wouldn't she?
How would she cry?
(WAILS)
(CHUCKLES)
REFLECTIVE MUSIC
For years Rachel refused to
accept she had Huntington's.
Yeah, yeah.
Yeah.
WOMAN: What do you think your life
would be like without Huntington's?
What do you think you'd
be doing right now?
REFLECTIVE MUSIC
DENISE: From when she was 24 and
first got the test through to now,
it has been in the tiniest
little increments,
but now, you know, incontinence,
um, has to be fed,
has to be showered,
has to be toileted.
It's just gonna get worse. I mean,
how much worse can it get?
It's basically like Rachel has
been sucked out of this body.
She's disappearing, has disappeared
over all those 16-odd years.
EERIE MUSIC
< KJ GRUNTS
Hey, bubs. How are you?
For you.
Thank you.
You well?
Yeah.
Yeah?
Yes.
KJ is outgoing, bubbly, life of the
party. Always has been and still
very much a—
It's always hard. Um, life's a whole
lot different since KJ's been moved
in there.
Communication's starting to get very
hard now. And she's very patient in
that way.
You know, you might have to ask her
10 times what she's trying to tell
you,
but it's all just part of life at
the end of the day, so we just
get over it and carry on.
Your vows say in your marriage
'sickness and health', and,
you know,
there's— there's still
feelings there.
DIANE: I don't know how much fight
is left in her now. Um, we're not
gonna give up on her,
but we also respect the fact that
she is deteriorating and we need
to acknowledge that.
It doesn't matter what we do.
It's not going to keep her
with us longer.
Thank you. Thank you.
You're welcome.
I feel so happy that, um, my sister
found someone like him to be with —
(CRIES) you know, Justin promising
to stand by her side, and he has,
and it's...
it's so lovely to see.
SOMBRE MUSIC
DENISE: Well, Rachel's now 41.
I know she's gonna die probably
within the next year or two unless
something unforeseen happens.
You don't want it to happen,
but then again, the reality is
I don't want her to continue
to live like this.
She can't do anything for herself.
And that— that's not life.
Every night when I
go to bed, I think,
'Am I gonna get a phone call tonight
because she's choked or whatever?'
It's always there in my mind.
It's my responsibility, but it—
I don't do it because I have to.
I do it because I love her.
Yeah, I don't think anything can
prepare you for a daughter dying.
I lost my mum recently,
and that was, um, very hard.
And, um, so I don't know how I'm
gonna cope when Kimberley goes.
I know I'll cope to get through
everything and make sure it's—
everything's done how she wants it.
Jump on the bed?
Yeah.
I've gotta get Kimberley
through this journey.
However long it's going to be or
however short, I need to get her
through that.
That's my duty as her mother, and
it's what you do for a daughter.
Wiggle, wiggle.
I don't wanna waste the time
grieving and feeling sorry for
myself or feeling sorry for her
and miss out on one moment of fun
or spending time with her,
quality time.
All right, just lift that
foot up there for a sec.
(GRUNTS)
Hey?
(SPEAKS INDISTINCTLY) Yeah.
Here you go.
All right. What are we gonna watch?
Action?
Yeah.
Comedy?
Hey?
(SPEAKS INDISTINCTLY)
Hey?
Well, one of the biggest things that
I learned from her is that you've
gotta live life today
and not hope for tomorrow.
Chick flicks. Oh.
(SPEAKS INDISTINCTLY)
Do we have to?
You just go out and make every
moment count as much as we can.
(SPEAKS INDISTINCTLY) Yeah.
TV PLAYS
That all right?
Yeah.
No?
Yeah, no.
OK.
POIGNANT MUSIC
You doing all right?
Yeah.
Yeah?
MUSIC CONTINUES
GENTLE GUITAR MUSIC
Captions by Pippa Jefferies.
www.able.co.nz
Captions were made possible
with funding from NZ On Air.
Copyright Able 2016
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