. LIVELY PIANO MUSIC Captions by Glenna Casalme. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015 MUSIC BUILDS MUSIC QUIETENS UNEASY MUSIC VELCRO RIPS Um, right. So... So, at the moment, um, I'm,... um... (TUTS) I am... Um, I am, um... We're going out. No, we're not going out. Where we're going? Oh. Can we stop that? Because I can't remember what I was gonna say. UNEASY MUSIC Alzheimer's is an invisible, um... Oh, what's the word? Um, an invisible,... well, horror, even. UNEASY MUSIC CONTINUES (TUTS) I've got all this in my head that I want to talk about, but I` I just` I can't` I can't get it out. (SIGHS) (RUBS HANDS TOGETHER) (SIGHS) Um... It's` Yeah, it's just really hard. Um, I` I can't get it out. And I know what I wanna say, but it just comes out... gobbledygook. Mum has been diagnosed a year ago with early onset of Alzheimer's, uh, at the age of, uh, 55 going on 56. Um, and at the moment, we're just sort of trying to manage that situation. We're trying to, uh` It's` It's a guessing game. Nothing here. I really wanna know how God picks people ` how, um... Like, why` Is it just random, you know, that people suddenly get Alzheimer's or...? But I think, you know, you've been through a lot. You know, you've lost two brothers, a sister and a mother. Some people have never lost anyone. Yeah. You know? Um, mixed with, you know, the upbringing of us, you know, where you were solo mum. Two children who` one of them was very difficult ` he who shall not be named. (LAUGHS) Yeah. It's caused by` by trauma throughout the life, um, of a person and just sort of, you know, things just chipping away, chipping away, chipping away, and then all of a sudden, it's just` it's just gone. You've come a long way since then, eh? Mm. You worked your arse off, became a legal executive and a real estate agent and all these things to provide. Oh, yeah. All the conferences I or` I organised and... (SNIFFLES) (EXHALES) That was my graduation. What did you graduate with? Oh, um, it was, um, Law. Everyone thinks Alzheimer's is just memory, but there's` Your personality's such a huge part of it, and that's the thing that goes first. You know, 10 years ago, even two years ago, you would never have guessed it. She was just happy, bubbly, life of the party. And now she's this person who's in a corner. Everywhere she goes, she just, you know, goes into her own little world, and you've just gotta sit there and, you know, look at that person, you know? As I say, the shell of the person you once knew. It's just... It's pretty awful. Do you remember all of these times? Yeah. Yeah, I do. KNOCK ON DOOR Mum? Yeah? You've been in there for quite a while. I need to use the shower if it's OK. OK. What`? No, I'm, um` I'm with the crew. They need to get your reaction to me asking you to get out. Oh! Yeah. So I'll knock on the door and be like, 'Mum!' And you'll just stand there like, 'Yeah? I'm doing my hair.' MAN: Rolling. Checking in. KNOCK ON DOOR Mum. Oh. You've been in there a while. Can I jump in and have a shower? You`? You're talking really? Oh, stop it! No, it's good. They need your reaction to me interrupting you. Oh. WOMAN: We'll try that again. KNOCK ON DOOR Mum? Can I jump in the shower? You've been there a while now. Oh. You're supposed to not open the door. KNOCK ON DOOR Mum? What? You've been quite a while. Can I jump in and have a shower, please? WHISPERS: What now? Is that all right? Yeah. I think so. Oh my God! (LAUGHS) (STOMPS FEET, GUFFAWS) (LAUGHS WHEEZILY) CHUCKLES: We'll get there. Oh my God! I think... the first two are probably gonna be... No, I can do it. Yeah? Give me one more chance. One more chance? (GIGGLES) I know. All right, come one. Brushing your hair. Brushing my hair. All right. I just feel` What do I just feel? Um... I... Yeah... I'm trapped, really, sometimes. Can't do this, can't do that. People saying what you can and can't do and all that sort of thing. And I` You know, with` Years ago, I could just do anything, go anything I wanted. But I can't now. BIRDSONG (LAUGHS) Come on, Ty. Come on. (CHUCKLES) Come here. You introduce yourself. Put your hand out and say, 'I'm Ty.' Here. You gotta shake people's hands. Look at the camera. Look how cool that is. It's way cooler than Dad's camera, eh? Uh, so, yes, Mum's moved in with, uh` with me now so that we can sort of monitor things and help manage things. Turned out to be obviously a great decision, uh, so that she can be with me and, you know, with somebody she knows, and she's got the help on hand to, you know, 24 hours a day. Oh, it's wonderful. Um, the fact that he can, you know, be there whenever I need him and all that sort of thing. Yeah. But again` There again, you see, um... Ohhh, what was I gonna say? Um... He has to have his own life too. Yeah. He's got his life, but I've fit into it somewhere along the way. Yeah. I'm not quite sure where. Um, so I'll just be in the office in the garage. So if you just chill with Ty. And you're gonna be a good boy for Nana, eh? So, my friend and I built an office in my garage when I decided to start working from home. I started my own media company. Working from home allows me to be here for Mum and still assist her in her everyday needs without, sort of, you know, just being in the house and invasive in her space. So she can still be her own person ` uh, but` and I can still go to work and do my bits and pieces ` but at the same time, when she needs me, I'm there. She more calls me for the small things just to get by. And if I wasn't there, that's where the stress and the anxiety and the not being able to look after herself would really come into question. So it's handy just being right there. Her days are not what she wants them to be, and so I'm trying to make sure that she gets out and does a lot more. Generally, from day to day, she just sort of putters around the house, does bits and pieces. She likes doing washing and bits of gardening and things like that. And most of it is` is watching TV. So she'll either have the TV on in the background or she'll be sitting down and watch TV. And that's where I try to break it up. So quite often I work at night-time in the office. And then the daytime is spent with her, trying to do things and` and break up that monotony of just television, television, television. After all the independence I had,... (SOBS SOFTLY) now I've just gotta... (SIGHS) go and do things that... even if I didn't want to do, I had to do. (BREATHES DEEPLY) I think that's been the hardest thing is losing that independence. There is` You know, the walks are the only real freedom now. Um, you know, and they're... they're something that I wouldn't dreams of taking away, but, yeah, very scary for me, you know? I know... (SNIFFLES) ...it's the only thing Mum can do by herself. POIGNANT PIANO MUSIC It's pretty scary. You know, you get home, and no one's home, and you think, 'How long has no one been home for? Has she been away?' You know? POIGNANT MUSIC CONTINUES Every time you hear the footsteps up the driveway, just a big... (SIGHS) sigh of relief comes to you, you know? POIGNANT MUSIC We had a` had a talk recently, um, with Mum about, uh, how things are going financially, because obviously I'm trying to work for myself and now also trying to give Mum a full life, and, uh, that's` that's really difficult, because, you know, if things don't pick up and if things don't get better financially, then, you know, we are gonna have to start looking at other options for Mum. Being that she can't be alone full-time, uh, you know, it's... it is gonna have to be sort of a cared-for option. Uh, you know, Mum took that really hard, and I took that on board as well that, you know, this is her worst nightmare ` you know, being 57 and in a rest home or something like that, surrounded by old people. I mean, that really just cuts you off at the knees. PLASTIC RUSTLES I have different toast... from the others. CURIOUS MUSIC CLICK! KETTLE HISSES Where's my pills? Where did my pills go? Oh my God! Where did they go? INTRIGUING MUSIC I have no idea... where my pills are. They were on my plate. Now they're not. Great (!) Uhhhh-hum! I had them all out on my plate. Oh, absolutely frustrating. You put things away that you think you` you have, and you haven't. And then you put a cup in the` in the, um,... um, a cup away, but, you know, and then you realise that` that you've still got three to do. Well, no` Things like that. Yeah. Yeah. It's just, um, monotonous. It really is. To deal with those later on, I suppose. I don't want that. I want that. (INHALES) I can't understand why... Cos the pills were just sitting on a plate here. And now they're not. And this is what happens to me every day. Um... (SIGHS) Ow. Yeah, it's really frustrating. I hate it. Actually, I'm gonna ring Adam and see... actually what... WOMAN: Where's Adam? He's gone out somewhere, I think. Um... RINGTONE Hi. Um, I had my pills on a plate. Do you know where they have gone? ADAM SPEAKS INDISTINCTLY Oh. (INDISTINCTLY) OK, then. All right. OK? OK. Bye. OK, so I've just gotta grab Tuesday's. So this is what we do. I'm gonna do that now. I think I'm quite lucky that I have, you know, a 5-year-old son while in this situation, because if I didn't, then, you know, I wouldn't know how to care for another dependent person, you know, regardless of their age. So, uh, that's` that's definitely worked in my favour. Is that new stuff? Yeah, that's` Oh, that's the one that` yeah, that you had the other day. OK, come on! You're under my power! (LAUGHS) (CHUCKLES) So, do you look after Tyler? Um, no, not a lot, no. Yeah, but people are coming out` in and out all the time. Mm. Hey, hey. Have you been good for Nana? BOTH: Yup. Oh, I don't know. Have you? How good? Uh,... normal? Normal? (LAUGHS) So not super good, but not really bad ` just` just normal. Yes. Yeah? Have you been good enough to go down to the park? Yes. You know, although Mum gets flustered easily by him, uh, you know, it's good that they spend together while they can, while everything's still good. So, yeah. GENTLE MUSIC Ohhh! What? (SPEAKS INDISTINCTLY) TYLER SPEAKS INDISTINCTLY OK, now, it's not a race across the beams, OK? Slowly across the beams, cos I don't want you to hurt yourself. All right? Ready, on your marks, get set, go! (GRUNTS) Come on, Nana! (LAUGHS) Tyler's off to an early start. (WHOOPS) Crossing over, Ty. Take your time. Take your time. Slow it down, bud. Slow it down. You right? (LAUGHS) Oh! A metre off the ground and you're screaming! (LAUGHS) All right, you ready? (LAUGHS) (CHUCKLES) OK, go. Go! You've gotta swing across here. Oh. OK. (GRUNTS) That'll do. That'll do. That'll do. Let's go. Ty. Come here. Come here. Come here. You have to do it again. Do it again. Why? Cos I said so. Go. Come on, Nana. Slow down, you. Come on, Nana. (LAUGHS) We should make the rule Ty has to do the obstacle course twice; Nana has do it once. I leapt twice already. Yeah? (GRUNTS) OK. Go, Nana. You're doing well. Let's go. Let's go. I think it's definitely made me a better person. I don't take anything or anyone for granted. Because of` of everything that's happened, I grab hold of something and I don't let it go, you know. And` And the best things in life, you should never let go of. That's the powerful side of` of this disease is that, you know, the people around you can either choose to be really upset and sad and just, you know, go along with it, or they can make the most out of everything, and that's what we've chosen to do. So it's a` it's a really special gift that Mum's given me now. Quick, start again, Ty. Start again. Quick, quick. Start again. What am I doing? You're still winning! Go. Go, go, go! Go, Nana. Keep going, Nana! Keep going. Come on, buddy. Go, go, go, go. Go faster. Go, go, go. Yay! No, you're not done yet. Oh what?! Go, go, go. Get up the wall. You gotta get up the wall. Jump. Try and grab on. Oh, that's it! Yay! Oh, that's it! CLAPPING Keep going. Keep it going. I can't. OK, here we go. (GROANS, GRUNTS) Here we go. Here we go. Get on. All right, hold on. I'm going this side. Oh God. Go, Nana. (GROANS) Come on, Nana! Come on. Am I...? Yep. STRAINS: Yah! (GRUNTS) (SPEAKS INDISTINCTLY) (GRUNTS, HUFFS) Here we go. Here we` (LAUGHS) BOTH LAUGH BOTH GUFFAW (LAUGHS HEARTILY) (PANTS LOUDLY) Ohhh! Agh! Oh! (LAUGHS, PANTS) Oh. LAUGHTER Great. Still got it! (LAUGHS) I went to a lot of the Alzheimer's meetings, and I was always the youngest. You know, by about 20 years. ...17, 18, 19, 20. Ready or not, here I come! < What were you scared of most when you found out? Um, one of them was, um, that I'd be put in an` in an institution or something like that. And, yeah` And that was really really scary. Where is he? I mean, everybody just carries on with their own stuff, but I'm sort of stuck here. I can't do what I want to do. Yeah, I j` I just gotta go along with what everybody says, really. Where can he be? You can't do what you want to do. You can't go where you want to go, and people taking, you know` um, people, um... (SIGHS) Yeah, people can just go off and go there and there and there and there and there. But I can't. I've gotta have a minder just about all the time. And it's just really horrible. Oh, there you are! Ah! (LAUGHS) Look at you! (CHORTLES) Were you moving around on me? Yeah! Oh, I kept looking for you and I couldn't find you! Oh, very good hiding spot. Well done. < If you had that freedom to do what you wanted to, what do you think you would be doing? Travelling the world. Mm. ENGINES ROAR ALL CHEER UPLIFTING MUSIC OK, so, you know that we're flying to Sydney first. So we'll leave here at about 3.40pm, which is quite good, because we're sort of gonna fly overnight. So hopefully we can get a bit of a sleep-in. And then we're flying to Bangkok, and then we'll end in London. OK. All right? Yeah! After we got the diagnosis, on the day, she just turned to me and she said, 'Well, I'm never gonna travel by myself again, am I?' I said, 'What do you mean travel?' She said, 'Well, seeing the Eiffel Tower and all these sorts of things.' And I said, 'Don't worry. I'll get you there.' And at the time, I had absolutely no idea how I was gonna do that. I, sort of, said it and then instantly thought, 'How am I gonna make that happen?' But that's now gonna be, you know, the biggest part of her bucket list which we're gonna be able to tick. What are you hoping to get from the trip? Just marvellous memories. (GIGGLES) Um... Yeah. Well, yeah. Just good memories and` and, um, new friendships. The bags will be in your name ` the ones that we're checking through ` but Adam and I will be responsible for them, just so you don't have to worry about them. Do you know what you're most looking forward to, or are you kind of just along for the ride? I'll go anywhere you wanna take me. Talk to me a little bit about Adam filming it. Yeah, no, he's` he's, um, gotta bring back all these memories, and good ones. Mm. Just to make sure when you're in a large crowd of people that you don't go, 'Oh, that looks nice.' Feeew! Yeah. And we turn around and you're` you're gone! So you're gonna have one of these little fluffy backpacks, and it's just gonna be attached` No, we're just gonna use Nala's one. So you've got, like, a backpack that's got, like, a cat. And there's a leash on the bottom. Kids will think they're just backpacks. They're not leashes. So we'll just put that over your back, and basically, you'll be clipped on to my one` I'm just kidding. ALL LAUGH They do have, like, children's backpacks. Yeah. We're not doing that. (LAUGHS) Although we could. Do you want one of them? No. (LAUGHS) Good answer. (LAUGHS) No, so what we might do is we might just hold` hold hands. We're gonna hold hands. Yep. Yeah, so I would say, you know, because of the Alzheimer's, we definitely do more than we would without it, and, uh, you know, it's easy to sit here and say, 'Oh, you know, without it, I'd be doing this and that and another thing,' but, you know, we weren't doing that beforehand. So, um, well, yeah, I think life would just be, you know` you'd be happy and it would be ticking along nicely, but it wasn't as extreme or adventurous as it is now. BOTH: Mm-hm. Mm. Yeah. Um, my sister and I drove all over the place. Well, in the lower South Island, and, um, mm. Used to have lots and lots of fun. PENSIVE MUSIC INDISTINCT CHATTER So, today, Sue, we've got you working down in the eco garden. You know that one you've done before, about three times? Yeah. So you've got your knee pad? Yes. And you've got your fork? Yes. What about gloves? Uh, yeah, gloves. Yep. You got those as well? Yup. Excellent. Good. Here we go. ROOSTER CROWS So if you wanna get your gloves, I'll go and get you some bags to put the weeds in,... All right. ...and then I'll come straight back, OK? OK. All righty. Yeah. (SIGHS) CHICKEN CROWS CHICKEN CROWS I'm weeding. Horrible job, but someone's gotta do it. What I like about volun` volunteering here is just the birds and the wildlife. It's just amazing. It just gives you a sense of serenity. No one, sort of, has to help me or` or, you know, do things for me. I can just do things on my own. Mm. And I love being in` in solitude and just thinking about things. Yeah. < What do you think about? What do I think about? I think about... my Alzheimer's. GENTLE GUITAR MUSIC In my head, uh, I` I'm not Alzheimer's. But I am, sort of. Yeah. Yeah, yeah. Um, and... < What do you mean by that? Well, sometimes I don't feel sick or` or anything. I just feel me ` normal. Yeah. Just think about things and what should've been or could've been. INTRIGUING MUSIC Yeah, so sometimes I don't even` Sometimes Adam just says, 'Get in the car.' I'm like` I have no idea... where we're going. Yeah. We've gotta go... Yeah. ...to the doctors, so, um, jump in the car and we can come back and do some more things. OK. Yup. Cool. All right. Let's jump in. Uh, so this doctor's appointment is, uh, quite important for us. Uh, it's, um, basically to get a medical certificate for when we're flying so that I can, uh, look after Mum and, uh, be able to be with her 24-7. We had an incident where we were coming back from Australia, and, uh, basically, Mum had a couple of bits of jewellery on her, and the metal detector went off, and, uh, I went over to... to help Mum, and they asked me to` The guy said, 'Sir, can you please stand back?' And he was quite firm. And I kept on trying to explain to them the situation, and I told them, you know, 'Look, she's got Alzheimer's.' And, you know` And they just` Basically, they wouldn't have a bar of it. And then they started getting really suspicious as to why I was trying to get to mum and trying to help her. So, um, yeah, it was quite` It was quite a traumatic experience. What does that story make you think of? Does that bring anything up for you? What story? Hi, Sue. Hi. How are you? I'm good at the moment. That's good. Mm. Your trip's coming up fairly soon. It is. It is. I can't wait. When do you leave? Oops. WHISPERS: Eight days. > Oh, eight days. Eight days away. Right. So, with regard to your travel, Sue, I think it's important that you carry a letter with you that outlines your memory problems and other medical problems so that if you get into trouble, you've got that, OK? Yup. > So... (READS) 'To whom it may concern, re ` Susan Robertson. 'The above name is a patient of mine. She suffers from early onset dementia. 'She will be travelling overseas with her son, Adam Robertson. As a result of her dementia, 'she has difficulties with short-term memory loss, with reasoning and some problem-solving. 'Because of this, she is dependent on Adam in all matters relating to travel and to her well-being.' You OK with that, Adam? Yeah, I think that's perfect, that. Yeah. > I couldn't have said it better. Very exciting. I'm thrilled for you. It's great. How have you been over the last few months since I saw you last? Um, oh, I think I must have been fine. Am I? Mm. That's your question. Yeah. I still get teary. < Do you? Yeah. < Fine. OK. So you get emotional at times? Yeah, I do. Are there any particular triggers to that, Sue? I don't know. You know what the big one is. > What? The thing that we discussed recently. > Oh, you putting me in a home? I don't really say it like that, but, yeah, um, talking about, you know, the` the future and where we're going and things like that. That, uh` That's probably the worst one. It took about three days for Mum to come right after that talk, which is... pretty devastating. Yeah. You don't have to worry about it right now. We got other things to worry about, like how we're gonna make you get lost in Europe. ALL LAUGH You know? No, you're not going to get lost in Europe. (LAUGHS) Definitely not. We're going to Europe todaaay! Whooooo! WOMEN SHRIEK, LAUGH TENSE MUSIC I guess the biggest thing I'm worried about in Europe is Mum's condition and how it's going to progress. Yay! (GIGGLES) Coming home from the trip, the worst-case scenario is that Mum's disease has completely taken over and she's, uh` she's no longer coherently with us. Uh, and that's a very real possibility. UPLIFTING MUSIC SING-SONGS: We're at the airport! I suppose that was something that I did think about while fighting for this trip, but at the same time, you know, do you turn to your mother and say, 'Oh, no, we're not going on a trip, just in case it makes your Alzheimer's worse,' you know? She'll just turn around and say, 'Well, my Alzheimer's is gonna get worse anyway. I wanna go 'and see these things.' That is the scariest thing in the world for me, because, you know, it's` it's gonna be, essentially, losing your mother. HUBBUB But you have to still walk beside her. I still... I can't really fathom what that's gonna be like, you know, seeing your mum, who's a shell of the person that she was. But it's` It's going to be a reality one day, and I would rather it happen while she's just in complete awe and happiness at, you know, this amazing journey that we're having, rather than just have it here when she's just, you know, sitting around the house and it just sort of swallows her. # For one last time # let's hold our own # and make it right. # Let's be clear # from the start... # This time. # ...it's all... # See more like this on attitudelive.com. This year's 9th Annual Attitude Awards will be held on December 3rd. Tickets are on sale now. For more information, go to attitudelive.com. Copyright Able 2015