Dementia: A Love Letter
* (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
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.
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.
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!)
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.