Dementia: A Love Letter

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* (GENTLE PIANO MUSIC) (BIRDS TWEET, TUI CALLS) Mandy's been at Kingswood Rest Home for 449 days. A lot of people say, 'Oh, you should move on,' and that. Well, you can't. I couldn't do that to her. You've gotta do the right thing. (GENTLE PIANO MUSIC CONTINUES) Hello, buddy. Look at that. It's not a cross you carry on your back, doing what's right. If we were reversed, she would be doing that for me as well. She's still my best friend. WHISPERS: Second. Come on, sweetie. You lean against the wall there. Have a smoke? Yeah. OK. I go and visit her every Sunday for about two hours. It doesn't sound much, but it is 73 K's away. It's probably terrible to keep her smoking, but she only has a couple a week, more or less. And they keep some here that I roll. I bring three or four every Sunday and put a butt at each end, and they cut them in half. Cos she'll want to put it out in a minute. 'I hate to say it, but she's a shell of the person I once knew. 'The most important part has died and gone, and I've gotta accept that now. 'There's basically just a body left.' So what have you been doing, buddy? You've had a shower today, have you? Yeah. Have a shower every morning? Yeah. That's good. I' try and talk to her. Sometimes she says nothing at all. 'And sometimes she doesn't know who I am.' And you're helping Mihi make your little glory box, aren't you? What's it called? That box that she's pinning your dress on? Mandy's mother died in, I think, 2008 of this affliction... called early-onset frontal temporal dementia. And that describes the area of the brain that it savages and turns into Swiss cheese, basically. And not long after that, Mandy had found out she was positive for it. We didn't do much that night. Probably got a bit drunk. Then the next day, we sat out on that step out there and just hugged each other. VOICE CRACKS: And, um... Just hugged each other and howled, basically. Hi, everybody! Hi, Mat! Hello, Des. Hello, darling. Mwah! How you been? Good, actually. Yeah? Good day? Mm. Yeah. Yeah? Mm. No mischief or nothing? Eh? Mm. Any games? Clare and I met back in 1969 in Wellington at the Downtown Club. And, uh, we just hooked up, stayed together, then got married in 1970. I was the young pup. I was younger than Clare by a year. So I was 19 and Clare was 20. Yeah. We had a really good life. It was all full of fun. Clare loved to dance, she loved her music. I love music. We had lots of friends. But, um, don't get on the wrong side of her, you know, she could be quite staunch. Anna that works in the front here, looks after you; Anna, she made you what they call a memory box. Oh. It's got all your things in there. Don't know. You remember when you were hairdressing? Yeah. Yeah, and you used the tools here. Remember the dog? Remember Skip? Skip. Yeah. Used to go and pinch food all around the street. (CHUCKLES SOFTLY) That was your favourite one. Remember that? Yeah. That's when you were hairdressing. Oh. 1972. Well, that's me again. Oh, look at those two. Eh? Yeah. Couple of lovebirds. We got married in '70, but we were trying hard to have kids, and we couldn't have kids, remember? Five years. And you had an operation on your, um— one of your tubes, and then boom! Out they came. Stephanie, Janine, and then Mereana. So we got six grandchildren. Three boys and three girls. Wow. Yeah. Can't do that. Yeah. It's done. (CHUCKLES) Done. No going back. (BOTH LAUGH) Yeah. She was a stunner, yeah. Beautiful woman. You know? Attractive, had a good body, and of course when she's dancing, she just let herself go, you know. She enjoyed a good time. I've only gotta look at her in a certain way and I'll get a smile. You know? So... Makes my day. She's still my sweetheart. She's still someone I hold dear. It's like losing someone, but you haven't lost them. (PIANO INTRO PLAYS) (SMOOTH, JAZZY MUSIC PLAYS) There she goes. Come on. (LAUGHS) When I'm with her, I feel like it's just yesterday. Whoo-hoo! Ooh, those hips are moving. Being with her now, the distance between the two of us, it has its sad moments. But it also has wonderful moments when she looks up and sees my face and straight away recognises me. And a big smile comes on her face. Yeah! That really brightens my day. (JAZZY MUSIC CONTINUES) Giz a hug. I can't feel you. (BIRDS TWITTER) We first met probably about 1984. And Mandy was probably, um, about 17 or 18, and I was 10 years old. There was sort of a mutual attraction — boy meets girl and, uh, girl's parents hate boy's guts, basically. So things were pretty volatile for a while. But never mind, we persevered through. Got married about six years later, when she was 25. As a person she was quite independent, and once she was determined to do something, she went ahead and did it. In those days, you smoked a lot of cigarettes and you drank a lot of booze. We rented a lot of dives cos they were cheap. (SNIFFS) And probably places that would be condemned these days. But that's how you lived in those days. We didn't have to have the flashest car in the driveway, and so we never owed money to anyone and we were never slaves to credit card debt or anything like that. So we come from that era where you didn't waste anything. It was more or less a hillbilly era where you ate all the poor stuff like pheasant and crayfish and smoked trout and that sort of thing, and you grew your own vegetables. When she left, uh, you're really in a state of being comfortably numb for a long time. This cup of hers just sat there for about maybe six or nine months until finally I got the courage to put it up in that cupboard. But I suddenly thought, well, it's filthy dirty like she loved to have it, to get the taste of the tea, and, um, I pinned a little note on it — 'Mandy's cup. No one use.' Uh... It's probably only worth a dollar, but that's where it stays. Cos that's where it belongs. That's a shrine to some of the animals. I can look anywhere in this place and see her. I mean, you don't tidy up things or put things away because that's where she liked to have them. It becomes part of you. You sorta keep thinking, oh yeah, you'll leave things exactly as they were for when she come home. And finally you think, 'She's not coming home.' That might be the hat that she had at her wedding, perhaps. Looks like it, doesn't it? Something like that. Probably only skip material, this, now, though. You wait there, Mum. Come round. Come round this way, Clare. Well, I can't. Here we go. Sit down. Sit. Living together was always nice. We could have our cuddles any time we wanted. Wherever we went, we were holding hands. Clare made me very, very happy. She always made me happy. (BOTH LAUGH) 'She always made me smile.' You don't say? I wanna get 'em up after 6, anyway. Yeah. Oh, here we are. There you go, Clare. Look at this. There we go, darling. There's your soup. Companionship has always been the same. We're close. I'm visiting almost every day, sometimes two times a day. I just look forward to seeing her face. And I know she... she likes seeing mine. Mmm! Clare was diagnosed with early-onset dementia at 62 years of age. You finish yours. I don't know where it is. Over here. Right here. Look. Right— So now you're up, you can do yours. She was doing things a little bit odd,... forgetting how to make a cup of tea. I started putting little Post-It notes around to say, 'tea, hot water, sugar,' and so on and so forth. She was hairdressing, and she was having trouble working out cash change. That's when we decided to go and see the doctor and get some tests done. And that was just, like, a real blow. It was like turning a light on to, 'this is what's happened'. Got all my gear, darling. I'm off. Oh, no. The diagnosis was vascular dementia. Over here. Over here. The little blood vessels in the brain popping and exploding and losing their connections. (KISSES) You lose me? See you tomorrow, eh? See you tomorrow. Yeah, should do. OK. See you, guys. See you, Mat. Yeah. Can you let me out, Anna, please? Gradually, over the years, things become more difficult. See you, Cathy. Later on, I had to start toileting her. And, yeah, just things like that, it really knocks you round. See you tomorrow. Bye. See you later. Bye. What you like doing best is hopping on to my shoulder, isn't it? And we just go for big walks like this, don't we? Didn't really think of having kids. She had a few growths inside her that needed an operation. So she more or less had a hysterectomy at that point. That's why we didn't have kids. But now, later, with all this carry-on, it was probably a blessing, anyway. (MUSIC BOX PLAYS 'MEMORIES') A lot of things that were Clare's are still in place. I don't wanna move them. Just gives me a little bit of a reminder. (MUSIC BOX TUNE CONTINUES) Looking at some of those photos, you know, just... take you back into a lot of the good times that we had. Sorta sitting around the table with family with a guitar and singin'. (MAT PLAYS GUITAR) # You're confused, but I'm here with you. # Please don't be angry, sad or lost. # I realise that you need me, # and I'll be here at all cost. The major coping mechanism for me is music. Playing in a band, playing music for the rest home. # Just know that I'll always love you, # even when your best is gone. # I will always be beside you # and love you # until all that is left is a song. # When she was diagnosed, she was really remarkable. To use some of her language, you know, she's like, 'Well, shit happens,' stuff like that. She would use that attitude. She took it on the chin, bravely. I was the one doing all the hurting. (PEACEFUL PIANO MUSIC) Mandy was probably about 44, 45 when things just started to go a bit peculiar. She's only 52 now. It's very hard when you're living with someone to notice the changes because it's so gradual. So other people have to tell you, 'Gee, this... Things aren't quite right there.' Mandy, come and have some breakfast, love. Come on, come and have some breakfast. Want some breakfast? Come on. It got to the point where she couldn't drive any longer after she smashed up one car and put a few major dents in the next one. Things like that, then they change your life where you've gotta take her shopping and take a day off every second week to do that, or something like that, you know? So you evolve to try and cope with this illness. That's for Mandy. Pass to Mandy, darling. Down to Mandy. She got to a point where she couldn't cook any more. The potatoes would have nothing in pot and they'd burn to death, or they'd be raw when they were on the plate. So I started doing the cooking, which I didn't mind. But when you're busy, it became a bit monotonous. I tried to make her do the dishes. It was a terrible thing. I actually stood behind her and forced her hands to wash the dishes. I said to her, 'You can't, can you?' She said, 'No.' And, um... (VOICE CRACKS) I said, 'I'm so sorry. Please forgive me.' And she said nothing. The psychiatrist more or less took one look at what she was doing and said, 'She should've been in care six months ago.' So that was it. And it had to be done very quickly, within a matter of days. Otherwise I wouldn't have done it. The night before, I just threw what I could into a couple of suitcases, everything she had. And as I was putting it in, she was taking it out. I think she had an idea of what might be going to happen. And I think I told her some lie about where we were going that day. And I picked up my friend Buster at Te Poi, and he came with me for moral support. So we went into the building. And when we pulled up, she said, 'Please, Peter, please, I'm not ready yet.' And you think about that every day. You never lose the... the guilt of the betrayal. That's why I can say to you it's 449 days since I put her away, because I keep it on the calendar. It's, uh— There's some sort of a logical sanity to doing that. Probably one of the hardest days of my life, doing that to her. (LYRICAL ACOUSTIC GUITAR) On her birthday, her first birthday when she was in there, she's been in there only a couple of weeks. I took her a card, and she could read things then and speak properly. And I think in the card I wrote, 'I still want to sing you a love song every day.' She read it and she said, 'Oh, that's silly. Why?' I said, 'To make up for the days I should've when I didn't. (ACOUSTIC GUITAR CONTINUES) You do feel robbed, because she's only 52 now. She's been robbed of what she could've had. I don't think there's any rhyme or reason; it's just straight biology that these things happen — random biology. Things will never, ever go back the way they were. You dream every day that they might. That's just how it is. (WOMAN) PHONE: Hello! Hello there. Hello! How are you? How's the troops? Yeah, we're good. How are you? Yeah, I'm good. Have you had a good day? Yeah. When I reach out, I'll always go to my daughters. They are always, 'Dad, what are you doing? What did you do today?' She was a good mum today. She was a happy mum. Oh good. The other day was a grumpy mum. It's not necessarily the same daughter all the time; it's a different one. I don't know whether they get a meeting together and they decide, 'You ring.' The neighbour's dog attacked the chicken. (LAUGHS) Through the fence. The impact on the girls — initially, it was really, really sad. They took it... It took 'em a wee while to, sort of, grasp what was goin' on. But once they got a hold of it, all they want to do is be there as much as they can. Yeah. (ACOUSTIC GUITAR) Suddenly, when you're living alone, you've gone through a phase just before that of trying to look after her. Suddenly all that changes where you've gotta learn to look after yourself. You've gotta remember to do things at certain times. You come home to an empty house and there's no one there to meet you at the door. Sit down for a couple of minutes, and then suddenly it's half past 7 and you think, 'Holy shit, I haven't eaten tea yet. I'd better try and figure it out.' You do feel lonely. A lot of people talk about support and that sort of thing. Well, for a long time my support was Miss Tui and her 11 sisters, basically, every night. (TAB TOP CLICKS) I was pestered by the Alzheimer people for a while to go and join them and all, but a lot of these people are elderly. I'm busy trying to cope looking after myself, still young enough to be working, so you haven't got time to go to a barbecue with the bewildered once a month or whatever. It's probably at the end of the day when you're starting to unwind that you almost think, 'Well, what the hell's the point of all this?' You feel like you've been shot and you're not dead. You feel numb. In fact, for the first month I'd go outside and just scream, some nights, looking at the moon. I'd almost see a face in it. I wanna be around to look after Clare for as long as Clare's around. It's my job. (TV PLAYS) When Clare went in and I was on my own, I was finding it hard in an empty house. I swear I'd be sitting watching TV and I'd swear I heard her get out of bed. I'd be in bed, sleeping, and I'm sure I seen one of the lights come on. Just all those little things that were sorta going through my mind. Turning a programme on that she used to love and laugh at. Just those little trips that trip you up, yeah. Come on, let's hop into bed, eh? Tuck you in? Mm-hm. OK. There we are. OK, you gonna lie down? Nothing. Gonna lie down? That'll be nice. OK, come on, then. I've got you. There we go. Put your legs down. Nice and warm? Give you a goodnight kiss? Mwah. Goodnight. See you tomorrow. OK. Sweet dreams, darling. Bye-bye. Bye. (LIGHT SWITCH CLICKS) (CLINK!) Happy days. Cheers, buddy. Well, look at that. How's Mandy? Stable? No. No, she always needs help even walking or standing up now. So it's... Yeah. When you put them away, for want of a better word, it was the hardest thing that you can never forgive yourself for. Because what if you misjudged it, or what if they could've been home for another week? It was like abandoning someone in trouble. Um, it was like,... um, pushing something aside that you couldn't handle. It's important for us to carry on doing what we're doing, and... and that's basically carrying our guilt. Maybe you need to get rid of it to move forward, because while you're getting eaten up with it, it's probably no good physically for your health. But where's forward? Without guilt. Just with regret and sadness, and that's about it. Yeah... You gotta keep the hope for yourself, don't you? You know. Yeah. You're fooling yourself, but never mind. I could bring her home for a day, overnight, a weekend. Um, but then it would... I'd have to take her back, because it would just be too stressful. Mm. And... at least I know, where she is, she's safe. Whereas I can't keep my eyes on her all the time. Been a great chat. Yes. Thank you. (GUITAR CHORDS PLAY) Come on. You guys are from the home too, eh? Eh? Yeah, yeah. Ooh, shit. Sorry. Just sitting over here. Over there? Hi, Mandy. Oi, beautiful jersey. Toru, wha. BOTH: # Pokarekare ana # nga wai o Waiapu # Whiti atu koe hine... PETER: There'll always be an empty room waiting for her and an open heart waiting for her. She definitely made me happier, that's for real. And if you had your time again, (CHUCKLES) I'd do it all again. # Ka mate ahau MAT: Yeah, I am so lucky. Lucky to have her in my life, yeah. Still my best friend. Yeah, I think of her every day. She's always with me. # I met my little bright-eyed doll # down by the riverside. # Down by the riverside, # down by the riverside. # I met my little bright-eyed doll # down by the riverside. # Way down by the riverside. # Whoo! Give yourself a clap. (PEOPLE CLAP) # Just know that I'll always love you # even when your best is gone. # I'll always be beside you # and love you # until all that is left is this song. # Copyright Able 2018 Attitude was made with funding from NZ On Air. Tickets are now on sale for the 2018 Attitude Awards. (INSPIRING ELECTRONIC MUSIC) This premier event shines a spotlight on the achievements of people who live with disability. Go to Attitudeawards.org for information about the event.
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Channel: Attitude
Views: 460,496
Rating: undefined out of 5
Keywords: AttitudeLive, Disability, Dementia, Alzheimers, alzheimer's disease, Dementia in New Zealand
Id: K0m9B9810ms
Channel Id: undefined
Length: 28min 18sec (1698 seconds)
Published: Sat Sep 29 2018
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