1 EVOCATIVE MUSIC Captions by Pippa Jefferies. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2016 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, 4�, 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 We're closing on the 2016 Attitude Awards. This is our ninth year, and we're striving to make this year's awards bigger and better than ever before. You'll experience unique stories of Kiwis achieving, mixed with phenomenal performances and a full three-course dinner.