PEDESTRIAN CROSSING SIGNAL CHIRPS BRIGHT MUSIC Captions by Imogen Staines. Edited by Ashlee Scholefield. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015 REFLECTIVE MUSIC Four and a half years ago, my mother, Patricia, was diagnosed with Alzheimer's. At first, my father, Victor, cared for Mum at home, but as her Alzheimer's worsened, it became too much for him. Now Mum lives in a secure dementia unit, and although they've been married for 63 years, sadly it's as if my parents now exist in a no man's land ` still together and yet apart. REFLECTIVE MUSIC CONTINUES Hiya, Dad. Hiya, Dad. Hi. Lovely. Hiya, Dad. Hi. Lovely. Good to see you. CHICKEN CLUCKS Have you been in yet? Not yet? Have you been in yet? Not yet? Not yet. Have you been in yet? Not yet? Not yet. OK. All right. Well, we'll go on in, shall we? Go in and see how she is today. Well, we'll go on in, shall we? Go in and see how she is today. Absolutely. I think everything's good. I think everything's good. Yeah? We should close that. WOMAN: Come here, darling. WOMAN: Come here, darling. OK. There we go. WARMLY: Hello. Look at you. You look gorgeous. Thank you, my darling. Hello. Ooh, I love kissing all these men. How was that? How was that? Ooh. Here now. Here now. Who is this handsome man? I'm sure I've seen him before. Oh, well, a-and with a handsome girl beside me too. Pretty good. (LAUGHS) Yeah. Yes. Yes. That's quite true. 'Dementia is a very long and slow process.' It starts with memory loss, but it's very hard to tell when it's happening at the start. In fact, I would say it's almost impossible to know, to see the early signs of dementia develop, uh, in real time. It was going too well a little while ago,... It was going too well a little while ago,... Really? ...and, um, they, uh... I told them all I was pregnant. (LAUGHS) The thing about dementia ` the loss of memory causes regression, and it basically moves from old age right back ` if you live long enough ` to zero, when you're born. Don't tell Grandad. You know what he's like with` with smoking. (LAUGHS) Yes, yes. Yes, yes. (LAUGHS) You'd get` You'd get a very good lecture. Patricia's been with us for about a year now, maybe just over. Her disease has progressed since she's been here, and that's normal and natural for` for de-dementia. Well, it is a progressive disease. It's hard to know how long, how quickly it'll progress, but she has had a couple of times of plateauing and being in a fairly stable time. Dementia's like an umbrella term, if you like, and Alzheimer's is a type of dementia, and she's been diagnosed with Alzheimer's. He had everything lined up in one drawer ` all his sins. (LAUGHS) He had everything lined up in one drawer ` all his sins. (LAUGHS) Oh! (LAUGHS) As we see the deterioration occurring, we can detect some ages. For instance, I think she's living her teenage years, a` (CLEARS THROAT) and, um, uh, it goes on for quite a long time. OK. 'But that timeline is somewhat fractured. 'Mum blends layers of the past and the present with a kind of fictional dreamworld.' LIGHT, REFLECTIVE MUSIC I met Pat in 1949 at a dance hall at Piha. I can recall Patricia and her best friend walking into this hall. I can recall both my brother and I standing there, surveying all the girls, and I can also recall saying to him, 'You're not allowed to have that girl. This is the girl I'm going to dance with tonight.' So I danced all night with Patricia. When we got married in 1951, it was making a household and` and within a year, bringing up a young son. MOVING STRING MUSIC I was an engineer, and as I chose places to work, so she moved. Being a mum and running a household was her job. MOVING STRING MUSIC CONTINUES . Mum and Dad were very close and never really apart. However, by their 60th wedding anniversary, something wasn't right. MELANCHOLY MUSIC Mum constantly asked for the time while staring at the clock, and she'd also find it hard to dress herself. I even took photos of her dressed in outfits and printed them out, but she still got muddled. Our first session with a gerontologist made it clear to us what was happening. I just accepted it. She was somebody we had to look after, and it was going to get worse. MELANCHOLY MUSIC FADES You actually give up a huge proportion of your life, because you can't get away from it. The demented person cannot drive, cannot prepare food, cannot wash up the dishes, doesn't really read very much, and, uh` and hobbies, uh, have gone long ago, because hobbies of all sorts are too, uh, detailed. LIGHT PIANO MUSIC My mother was actually quite a stylish woman. She` She was incredibly into her craft. She had this huge talent for spinning and weaving and knitting and colour and textures. The miniatures was also a big part of her life. The detail that she goes into creating those dolls' houses and the figurines, it's amazing. LIGHT MUSIC CONTINUES Night-time sleeping was spasmodic as the sundowners got more severe. Many times during the night, she'd walked around, turning all the lights on, sitting in the chair, coming back into the bed, bursting into song. The worst that happened was when she wandered out with the minimum of nightdresses on, walked into the garage, couldn't get past the garage door, sat on the cold concrete floor and then ca` started to call out, and I woke up and found her there. Sundowners is a term that's used for a collection of` We call them the BPSD, which are the behavioural and psychological symptoms of dementia. And often they can be, you know, difficult. You know, the` we can get people that are very aggressive, they're very anxious, and so typically it does happen in the later afternoon. Do you know something? The way you're behaving, we'll be better to get a place without you. WOMAN: Don't be silly. Dear God. I wanna go down there. Please. I'm glad you said please. You may go. I'm glad you said please. You may go. No, I'm going down there. I know. Your mum's very tricky. She's, um` She's amazing, cos y` often you can't de-escalate your mum. Once she's started, she's absolutely` she's regal. (LAUGHS) Once she's started, she's absolutely` she's regal. (LAUGHS) Mm. Mm. And she'll be there. She'll be emptying the room. She'll be telling people, 'Get out of my house. 'What are you doing sitting around in my house?' (LAUGHS) About 4 o'clock in the afternoon, she would say to me, 'Oh. I want you out of this house. 'I own this house. You shouldn't be here. I want you out, and I want you out today, 'and if you don't go, I'm gonna call the police.' And, um, I would` I very quickly cottoned on to the smart way of dealing with that, which is say, 'OK. Come on. Let's call the police now.' So she would go to the phone. She would put her hand on to the phone and pull it back and say, 'Oh, I'll do it later.' And it was all over, all gone. Cup of tea, biscuit and all happiness. GENTLE ACOUSTIC GUITAR MUSIC BIRDS TWEET GENTLE MUSIC CONTINUES While Mum was deteriorating with dementia, respite care came in, and that was good. It gave him a little breather. His world was becoming very, um,... full of Mum and nothing else, and we were very concerned about that. GENTLE MUSIC CONTINUES And then what he did was he came down to stay with us, and I would go out with Mum. My husband, Leigh, would go out with Dad, and he'd take Dad sailing, and they were amazing times. LEIGH: So, how did we go today, Vic? LEIGH: So, how did we go today, Vic? I think we did well. Meaning? Meaning? Meaning better than` better than usual. I met Pat and Vic about 12 years ago. It was beautiful. They were very welcoming. I remember them being very close. They're kind of like a` a unit, a couple, um, and while the nuances of that have changed as Pat's condition has changed, I don't think the actuality of it has changed at all. Somebody going into care is a huge life decision. I think it was a decision Vic couldn't make on his own, because there's this fear of letting somebody that you love down. There's also, I think, not wanting to admit that you can't cope yourself and that you need some help to do that and it's gone beyond what you can do for that person. CHICKENS CLUCK At the beginning of last year, she had a cancer operation on her colon. During that period, she was assessed for the degree of dementia that she was going through, and, of course,... (CLEARS THROAT) it was pretty clear that full-time care was necessary. SUZI: Come towards me, Mum. PIANO MUSIC Oh, you look beautiful. Oh, you look stunning. What happened was that I picked her up from hospital on her discharge. We dressed her in her favourite fur coat. It was a cool day. I drove her to Leigh Road Cottage, and she did not go home again. PIANO MUSIC CONTINUES LOW MURMURING I was a long time getting used to it and realising how necessary it was, because before that happened, I wasn't getting much sleep at night, and I could see that if this continued for much length of time, I would be sick too. MAN: So that I can do a film... She doesn't retain a lot on the daily life, but she'll` she'll remember back. She'll talk about life with Victor before she came here and talk about the children she had. She's very humorous with her quips. She'll come out, and then she'll have a giggle. It's quite gorgeous. And loves her music. That's the other thing. When there's music happening, Patricia's in her element. She sings, and she just comes alive. OK? OK? BACKGROUND CHATTER Well, I'll tell you what, you walk towards the` Well, I'll tell you what, you walk towards the` No, darling, I'll` I'll take it. FIONA: He's still a very loving, dedicated husband, but I'd like to think he's gonna accept the` the disease. Yeah. Yeah. That's a biggie. Yeah. It's a biggie in terms of his, um, emotional health. Sit down, darling, but I-I'll sit there. (WHIMPERS) Sit down, darling, but I-I'll sit there. (WHIMPERS) It's all right. I'll get it. It's all right. It's stopped. It's stopped. You all right? You all right? Yes. OK, darling, I'll help you sit down. All right? BACKGROUND CHATTER BACKGROUND CHATTER I'll do it. W-We find Victor is very analytical. He wants to know reasons and wants to understand what's happening and also for the best things that can possibly happen for Patricia so that she can live as well as she can with her dementia. So he's always looking at research. He's always looking at the literature. He's always sending us little things to look at as well. Ooh, that looks nice. I had a husband a minute ago. Hello, darling. In her time here, Patricia has made relationships with some of the other residents here. We come into the room sometimes, and she's sitting next to another resident, holding his hand and introducing him to us as Victor. BACKGROUND CHATTER I love you. I love you. Mm. (SPEAKS INDISTINCTLY) FIONA: I admire Victor for` for letting go. And, yeah, to see your loved one holding hands with someone else. It's` It's a` I` I dunno. It's a bizarre` It must be a tough thing to go through. REFLECTIVE ACOUSTIC GUITAR MUSIC Give us a kiss. Love you, Mum. We'll see you in a little while. We'll see you in a little while. OK. All right, sweetie? All right, sweetie? I'll be home. All right, sweetie? I'll be home. You'll be home? OK. VICTOR: OK. > VICTOR: OK. > Make sure you're home. OK. Bye-bye, darling. OK. Bye-bye, darling. OK. > OK. Bye-bye, darling. OK. > Bye-bye, darling. 'I love that she still recognises us. Also now at Leigh Road, she's less anxious, 'and sometimes she sparkles with joy I've never seen in her before.' TRANQUIL MUSIC Life without Mum in his daily care is very different for Dad now. Unless I'm coming up to see him or friends are due to visit, he really only has one to cook and shop for. Thankfully he's always been a health food nut and cooked for himself, so that transition hasn't been so hard for him. How are you, Victor? How are you, Victor? I'm fine. (CLEARS THROAT) 400g of your super-lean mince, please. Super-lean. Super-lean. Thank you. Here we go, Victor. Here we go, Victor. Thank you. Thank you very much. Thank you very much. See you again. Bye. Thank you very much. See you again. Bye. Cheers. TRANQUIL MUSIC CONTINUES But the empty house and the big, long days alone must be tough. He always says he has loads to do, and he's certainly an active man with a big reading capacity. But having cared for Mum for so long now has put him out of the social loop, and I worry about that. It must be hard to figure out who you are and where you fit after a trauma like this. Oh, looking after myself means doing everything. Nothing happens unless I do it. (CLEARS THROAT) That's just the nature of the beast, but it's OK. I have a lady that comes in once a fortnight for two hours and cleans the floors, does the` some dusting ` whatever's needed. Very helpful. Very good. Gives me a chance during that time of doing something else that I might not have otherwise done. PEACEFUL PIANO MUSIC PEACEFUL PIANO MUSIC CONTINUES TV PLAYS IN BACKGROUND PIANO MUSIC CONTINUES Good boy. (WHINES) First thing in the morning is definitely deal with the doggy. And the doggy has to have his run, and he has to have his biscuit. (WHINES) (WHINES) Here we are. Food for you. And then it's a cup of tea for me, and then it's breakfast, and it's often, really, sit down on two things ` reading for about half an hour or an hour, and then I get a sudden pang of needing to look at my emails. It really is very repetitive like that. But more than anything in the morning, my thoughts go towards, um, what have` what do I need to do today to progress the maintenance on the house? BIRD TWEETS What are you do`? What are you doing, Dad? I'm putting the final coat on the columns and... Project like this is just stop-start all the time. Yeah, so Dad's always got a project, and I get worried about him being up a ladder. I do. But he wears a` an alarm on him in case he did fall over. Um, but it is a bit of a worry when he's on his own here and up on the roof or up on the ladder. Um... He loves it, though. I think it keeps him alive, so we'll just roll with it for now. PEACEFUL PIANO MUSIC Before Patricia went into Leigh Road Cottage, Music Society was the one group in Warkworth we could both enjoy. Thank you very much. Thank you very much. That's all right. Enjoy the concert. PEACEFUL MUSIC CONTINUES LOW BACKGROUND CHATTER Patricia, she'd gone to Epsom, uh, Girls' Grammar. There she learnt to love the singing and followed that through as long as she could. And even then, when dementia was taking hold, music was the thing that really livened her up to the point where she felt so worked up by music, at the end of the programme she would stand in the foyer and start singing. Well, I felt a bit embarrassed by it, because she was calling everybody to sing with her. But fortunately one or two of our friends who knew what was happening quickly intervened, and we were able to, um, close it down. But` But it was indication` It was` It was something that told us about singing for her ` very important. Now is the hour when we must say goodbye. All right. Here we go. Tight. Being an engineer, information is power for Dad. He even keeps note of his blood pressure to ensure he has a full and complete picture of his health. Well, the primary purpose that I want from my GP is that I want him to keep me alive, and I want to outlive Patricia. And the reason why I want to do that is that the experience seems to be that if carers don't outlive the dementia patients, then the family has to go through a lot of trauma in the whole process, so this will` If I can outlive Patricia, then the` the family can live much more easily. Have a seat. I'll just check your ankles before you put your shoes back on. Get much ankle swelling? Get much ankle swelling? Oh, yeah, that one there. 'He comes from the realm where everything is measured and categorised' and explained and dealt with. And I think a lot of what we deal with is so much more a horrible shade of grey. 'I think one of the hardest parts is that he's lost his partner in life, but he hasn't.' And that is in itself a real grieving, bereavement process. And it's very long, and it's very slow, and it can be very very hard. BIRDS TWEET Poke your tongue out. OK. That's all right. There's been a change for Patricia over the past few weeks. The disease is progressing for her, and, um, that's evident in the way she talks and how she presents herself. Some days she doesn't want to get dressed. She just wants to be in her pyjamas. You aren't allowed it. Oh, I'm so tired. Oh, I'm so tired. Yes, well, that's OK. You'll have a sleep` big sleep this afternoon. # Here we come, and we are sailing. # Haere ra. We're on our way... # Haere ra. We're on our way... Go on. Away you go. UKULELE MUSIC PLAYS I don't know that verse. I don't know that verse. Well, you can sing it in Maori if you like. # Dee, dee, dee, dee, dee, dee, deeee. # Give yourself a bit of time. # E hine e,... > # ...hoki mai ra. # Ka mate ahau # i te aroha e. # Don't pull me too hard. OK. OK. I'm just so tired. OK. I'm just so tired. OK. That's a girl. Good girl. Gotta remember that I'm over 70 now. Gotta remember that I'm over 70 now. I know. I know you're over 70. Come on. OK. Let's` One foot in front of the other. That's better. That's it. (WHISPERS) Take big steps. Yes. Yes. I'm sleeping in here. Yes. I'm sleeping in here. Here's your bedroom. It's over here. Where's my sock? Where's my sock? Oh, it's` I can't sleep w` I can't sleep w` You won't` You won't need the sock. I can't sleep w` You won't` You won't need the sock. I will need the sock. WHISPERS: That's a girl. WHISPERS: That's a girl. I'm so tired. WHISPERS: That's a girl. I'm so tired. Yes, I know. There we go. Now, we'll just` There we go. There we go. Is that better? How's that feel? There we go. Is that better? How's that feel? Yes, that's good. BIRDS TWEET (KISSES) (KISSES) Is that my husband? (KISSES) Is that my husband? That's your husband. Oh golly. (INHALES DEEPLY) Oh hellfire. (SOBS) I'm sorry. (CRIES) I can't` I'm sorry. (CRIES) I can't` It's all right. Oh golly. Do you want a cup of tea? Do you want a cup of tea? No. Oh, no, no. I'm fine. I've just gotta get past this. (SIGHS) Oh golly. (SNIFFLES, SIGHS) Oh, Dad. Oh, Dad. I'm sorry. (INHALES RAGGEDLY) (SIGHS) Gut-wrenching. POIGNANT MUSIC Patricia used to love it here at Brick Bay. It was her choice to come here every time. The wind, the sea, the green grass. And it's a lovely memory for her. Now it's a memory for us. MOVING MUSIC SEAGULLS SQUEAK In November, Mum's health took a turn for the worse, and it seemed the cancer had returned. My brother Marcus came home to see her for the very last time. I was really fortunate in that my first visit to Mum two days ago, we caught her when she was awake. We were able to have a conversation, and I'm not clear that she recognised me, but to be able to touch her hand, look into her eyes, uh, was very important, because that actually helps ground it, and it helps make all the contact that I've had from a distance a lot more meaningful. Do you want to sleep, Mum? Would you like a sleep? You tired? Do you want to sleep, Mum? Would you like a sleep? You tired? Yes. Would you like to sleep, darling? OK. Uh, Patricia's, uh, now moving into the last stages of her life, and the combination of dementia and cancer is going to take her. The movement of cancer in her has taken the weight off her and is now leaving her so she can't eat easily. So that's speeding up the whole process, and unfortunately we're not going to have much time. I love you. I love you. I love you too. (KISSES) Bye, Mum. Uh, this time, as it comes towards the end, is a darn sight harder than I ever imagined. MOVING MUSIC This is because the reality of it all is` hits you far stronger than you realise, uh, and although we all get mentally, um, ready for it, it's not the same as the real thing. Can you hear us, Pat? Can you hear us? Do you know we're here? Do you know we're here? (MUMBLES) (MUMBLES) You do? You do. MOVING MUSIC INTENSIFIES . There are no rule books. And you've got to make your own pathway in your own way and for each case. So I've learnt a lot. I've b... (CLEARS THROAT) I've been there at my dad's death. I wasn't there for my mother's death but soon afterwards, but nothing has been like this one. MOVING MUSIC CONTINUES . MUSIC FADES Nominations for the eighth annual Attitude Awards are now open. For information and entry forms, go to... It's great to be in an audience where people are talking about ability and not disability. Captions were made possible with funding from NZ On Air. Copyright Able 2015