[Applause]
hi oh it is bright that was such a
wonderful introduction yeah thank you
thank you okay
about dementia um a person with dementia
is not a person who’s dead and gone a
conversation with someone who has
dementia is a conversation it’s still a
conversation whether it makes any sense
or not a person with dementia may not
recognize you
so do you disengage after all what’s the
point if they don’t know who you are
what’s the point anyway you’d rather
remember who that person used to be
wouldn’t you it makes you really sad it
makes you angry it hurts your heart and
it’s really frightening and I get all of
that you’re getting a turn in a minute
the person with dementia feels all of
those most emotions as well all of those
emotions on top of which they feel
confusion disorientation and often
abandonment some people say that people
with dementia are the loneliest people
in the world so me and I are here to
talk about our dementia story and Ming
has a disclaimer two things we did a
check recently and we did questions and
the woman asked about anger with
dementia now this is our experience a
lot of people who have fathers mothers
whoever or whatever your arm
circumstances are know probably that
people that have dementia are some is
that get angry there’s it’s hard for
them to visit them because they can be
quite violent maybe and we found this to
be troubling to answer because we hadn’t
experienced that but it’s probably
feared my Nam answered at that last talk
we did and that they’re experiencing and
but I guess we can’t speak for anyone
else so it’s all very well we’ve been so
lucky and
personality has not changed well not
that much every now and then he’ll lash
out a little bit but that again that’s a
fear thing especially late in the
afternoon and we are here to talk about
just our story so we’re not speaking on
behalf of anyone else and we’re not in
short track yes
ideally not hopefully and short tracking
people who are experienced experiencing
this now so we can give you advice now
instead of go through the rigmarole that
we did first yeah yeah and the misery in
the sad and sorrow at balding in the
thank you a bit of context well Rebecca
just gave talked about the book yeah so
quite strange that I would have written
a book all those years ago
about well Alzheimer’s disease and then
with no way of knowing that I would have
a husband who would succumb to
Parkinson’s disease dementia which is
obviously in the same family but another
bit of context Anthony’s 23 years older
than me
so he’s at 81 now oh no dodgy the mass
and he he so and we have this kind of
amazing love story which also provides
the context for what what we were able
to enjoy now even though Anthony’s been
in a nursing home now for nearly six
years he has other diseases as well as
Parkinson’s disease dementia my mother
said to me during that first year when
Anthony went into the nursing currencies
which I have no recollection of that
first year because it was so so
heartbreaking oh and she said oh you
know she said you cried all year you
just cried and cried and you were the
same brown coat every day my mom did
wash it’s not as I yeah I did
I feel like I have to you know so so I
was heartbroken and he was heartbroken
we I I couldn’t manage him he was
becoming less and less able to walk and
shower and everything like that me on
the other hand felt yes thank you for
the obvious key I was i as a adolescent
and not listening to your parents and I
think all adolescents kind of slightly
Rubel I didn’t repair I was very spoiled
but um I kind of thought no mums not
right about this and that and I got
angry at dad and not so much the disease
but then over time and even now I still
struggle at 23 with the frustration of
him not being able to do that the things
he could do and but now through mums
wise words and I’m sorry it’s taken so
long you know you say something the two
years later I seem to get it and I’ve
come to realise mums are quite right so
any actually any men that there listen
to your mother I didn’t realize that
would get so I got there eventually
yeah thank you thank God anyway one of
the things so the first couple of years
you know I wasn’t coping well Anthony
was more lucid there then so it wasn’t
it was harder to leave and go home or
take him home in the wheelchair taxi in
the same goodbye was absolutely you he’d
cry had begged to go home you know I’m
sure many people in the audience of
experience that awful heartbreak of yeah
so that after about two years it became
totally impossible to take him out or
maybe two and a half years and then I
thought okay we have to do this
differently so I started to make myself
at home in the nursing home
whereas before my visits had been I
guess I I was dreading I dread the
visits because I knew when I went to go
home it would be heartbreaking first I
found myself avoiding visiting and so
when I turned it around and made myself
at home in the nursing home room it was
just it was like an epiphany of sorts
you know I stocked the cupboard with
bran
with kyun why you no no nothing no
nothing so that we could invite people
over and and I’ve had nibbles in the
Donmar teas and avocados and I’d have
stuff in the cupboard it’s to sustain
myself but also if people dropped in it
was like home and yeah it took cutlery
and glasses and just familiar Cutler in
Brussels events and he recognized not to
trick him back then because he he did
know the difference between the nursing
home and home
whereas now he often thinks he is at
home
I take DVDs comedy series that he likes
he loves Michael Jackson and so got the
Michael Jackson DVD and visitors like my
mother who is here are feel really
welcome and it’s wonderful and I feel
content happy in the room it’s
comforting Francie his eyes just light
up when he doesn’t have much expression
because of the Parkinson’s disease mask
I take my paperwork in to do so I take
my writing in to do so that I may I have
made myself at home there and sometimes
I actually can’t wait to get there
because I mean I’m often on the farm
alone all alone and so it’s actually I
don’t really get lonely but that alone
feeling sometimes gets to me that is
lonely whereas in the nursing home
that’s always something happening in
there people around so it’s and I’ve
made friends with a lot of staff of
course so it’s fun ok I’m just going to
give you an example of a typical
sentence
from Anthony because again I’m talking
about the dialogues that we share ok
this is typical can you put that kettle
on the cat before the volcano helps us
hose the garden so that that’s just to
illustrate the kind of thing he might
say I can my answer to those kinds of
questions is always yes and often I’ll
just go I’ll go out of the room
and walk around and then come back in
and yeah I’ve just done that I’ve done
that but when once upon a time I found
this hard I think people do find hurt
this hi nice to go you’re totally mad
and you know it would always cause well
occasionally I mean that’s the thing
there’s no strict one way or the other
sometimes when I absolutely can’t
decipher what he’s saying especially if
the words aren’t even coming out just
syllables I’ll say it took so much crap
and he will just get that smile this he
he can’t smile or laugh where he used to
because of the Parkinson’s disease
affecting his muscles but he’s got this
amazing slow smile and he loves that
having the Mickey taken out of him
some reason always has and the whole
love thing he’s we never used to be
lovey dovey smoochy Ruchi couple but now
I hold his hand a lot because it’s just
that tactile contact is he’s great but
he’ll often take my hand as if it’s this
is what he’ll do he often does that and
I’ll say something like what’s wrong
with my why don’t you want to hold my
hand anymore and pretend to be her and
he’ll say it’s just so tiring
[Laughter]
and because he doesn’t really get where
he is he he when I arrived he often said
something like how do you always know
how to find me he often thinks he’s at
the Rose hotel or at a party or a
boarding school so his orientation slips
between the era’s as well as places the
other day he said a beautiful thing to
me I entered the room and I came into
focus and he said wonderful wonderful
wonderful beautiful beautiful beautiful
I was just trying to summon you okay so
going with the flow what we usually do
is go with the flow so uh after you’ll
say I’ve just run sixteen kilometers
fixed all the fences and I’ll say oh
that’s we look so tired which is of
course why why I contradict him and it
makes him feel good you know and and
robust he thinks he’s getting better
I say yeah of course you’re getting
better he thinks he’s getting skinnier
that he has got a beautiful body and I
say yes well he he’s pretty like
diminished since he used to be a bit of
a much of a thing but now he’s really
skinny but I don’t you know I don’t like
he loves his washboard he keeps me just
keep now we keep raising that up and
keeping make sure that he has his
beautiful yeah and I eat lost but not
intact giving him chocolate which is
vacuum sound and then no no no more like
I don’t want to ruin my beautiful body
and the way I’m saying it those
sentences actually don’t come out as
fluidly as the way I’m saying yeah
because he struggles very much with
speech and that’s why I write them all
down a lot of humor as you can probably
tell ask Christmas which I decided no
presents because the answer he doesn’t
really get that anymore
so Christmas Day I said I’m not doing
presents you know that and Anthony
actually pretended to be really
disappointed and I said we didn’t get me
anything
okay and he said yes I took a calculated
risk Thanks he just comes out with this
my father blessings going to the flows
and always doesn’t always work however
because we’re his mum is the question
that he asked every week now he’s 81 I
think I said that his mother has died
I’ve never met now usually I’ll say he’s
she’s home with me or she’s visiting
someone but one week he said to me why
do you keep refusing to take me to see
mum why and I you know I had to break it
to him and then he was shock was
horrible he was shocked grief-stricken
and then embarrassed that he’d forgotten
and extraordinarily the next day he said
as I entered his room he said by the way
mum is not dead
so so it’s that kind of awkward topic
home and his mother those topics are
very difficult because they distress him
so I do diversion now so the other day I
just said when he said where’s mum I
said you’ve got such a big nose and then
he says you just want to see me naked
two minutes
salaries fabulous I love the idea
fabulous
okay so and you can make things up I can
make things up why not
so when he asked me I didn’t
deliberately do this it just popped out
when he asked me one melbourne cup day
if we’d won any money I just said
without thinking yeah $20,000 however I
know this is a little bit unethical but
he it popped out and you’re making so
happy as a farmer loves money and
trouble is he started telling Oh
everyone so then I had to perpetuate
this lie and I even had to lie to you
didn’t go down with us – where was it –
week he was a poor I thought I had I
could bathe in $20,000 and I don’t know
buy this that or the other but no my
mother did lie to me in it but in the ED
but once again that had a better had a
really good effect on dad even though he
still hasn’t got the mental food is
another tough wonderful talk of a topic
of conversation in the nursing home as
well as for real real food and my very
clever way I think of leaving to go home
now is to say what do you want for tea
we make a list I name all the beautiful
stuff with your loves crayfish oysters
and then I go home and it almost never
comes back to bite me
sometimes he I think only twice in the
last three years has he said you didn’t
come back mostly I go home he waits
expecting the crayfish and oysters but
isn’t disappointed because by the time
teat I can’t
tea time comes he’s in the sand at
sundown in phase which is the more
confusing part of the day so he’s
forgotten there’s a lot of long works
really well it sounds like there’s a lot
of lies and deceit but it’s it’s all for
the necessary yes
we were out of time so one last he
always knows who I am and that Ming is
the first of the two of us to not be
recognized hilariously if you did catch
us me my little five minutes so our five
minutes of fame on the radio and ABC
that was pretty exciting I briefly
mentioned the day before I went in to
see him didn’t really I wasn’t looking
forward to I wasn’t not looking forward
to it I go and he thought I was the
hairdresser
now the hairdresser’s a middle-aged
female quite rather attractive and he
told me yeah you’re a bit of a good
bloke Antony and if you need to know who
I was but then I slowly you know jogged
his memory I felt like I had to and then
he um he did get it that it was me and
it was nice not to remind him that I
came from his genitalia and all that
sort of and start saying that that’s
between me and Dad a good funny and he
yeah he got it but then there was that
negative you know even though I got that
all on one Chickahominy he wanted to go
home so you’re right but I think what I
admire about Ming is a lot of people get
so wounded when they’re not recognised
and he’s handled it so well okay a
person with dementia is not a person who
is dead and gone thank you very much
[Applause]
hi oh it is bright that was such a
wonderful introduction yeah thank you
thank you okay
about dementia um a person with dementia
is not a person who’s dead and gone a
conversation with someone who has
dementia is a conversation it’s still a
conversation whether it makes any sense
or not a person with dementia may not
recognize you
so do you disengage after all what’s the
point if they don’t know who you are
what’s the point anyway you’d rather
remember who that person used to be
wouldn’t you it makes you really sad it
makes you angry it hurts your heart and
it’s really frightening and I get all of
that you’re getting a turn in a minute
the person with dementia feels all of
those most emotions as well all of those
emotions on top of which they feel
confusion disorientation and often
abandonment some people say that people
with dementia are the loneliest people
in the world so me and I are here to
talk about our dementia story and Ming
has a disclaimer two things we did a
check recently and we did questions and
the woman asked about anger with
dementia now this is our experience a
lot of people who have fathers mothers
whoever or whatever your arm
circumstances are know probably that
people that have dementia are some is
that get angry there’s it’s hard for
them to visit them because they can be
quite violent maybe and we found this to
be troubling to answer because we hadn’t
experienced that but it’s probably
feared my Nam answered at that last talk
we did and that they’re experiencing and
but I guess we can’t speak for anyone
else so it’s all very well we’ve been so
lucky and
personality has not changed well not
that much every now and then he’ll lash
out a little bit but that again that’s a
fear thing especially late in the
afternoon and we are here to talk about
just our story so we’re not speaking on
behalf of anyone else and we’re not in
short track yes
ideally not hopefully and short tracking
people who are experienced experiencing
this now so we can give you advice now
instead of go through the rigmarole that
we did first yeah yeah and the misery in
the sad and sorrow at balding in the
thank you a bit of context well Rebecca
just gave talked about the book yeah so
quite strange that I would have written
a book all those years ago
about well Alzheimer’s disease and then
with no way of knowing that I would have
a husband who would succumb to
Parkinson’s disease dementia which is
obviously in the same family but another
bit of context Anthony’s 23 years older
than me
so he’s at 81 now oh no dodgy the mass
and he he so and we have this kind of
amazing love story which also provides
the context for what what we were able
to enjoy now even though Anthony’s been
in a nursing home now for nearly six
years he has other diseases as well as
Parkinson’s disease dementia my mother
said to me during that first year when
Anthony went into the nursing currencies
which I have no recollection of that
first year because it was so so
heartbreaking oh and she said oh you
know she said you cried all year you
just cried and cried and you were the
same brown coat every day my mom did
wash it’s not as I yeah I did
I feel like I have to you know so so I
was heartbroken and he was heartbroken
we I I couldn’t manage him he was
becoming less and less able to walk and
shower and everything like that me on
the other hand felt yes thank you for
the obvious key I was i as a adolescent
and not listening to your parents and I
think all adolescents kind of slightly
Rubel I didn’t repair I was very spoiled
but um I kind of thought no mums not
right about this and that and I got
angry at dad and not so much the disease
but then over time and even now I still
struggle at 23 with the frustration of
him not being able to do that the things
he could do and but now through mums
wise words and I’m sorry it’s taken so
long you know you say something the two
years later I seem to get it and I’ve
come to realise mums are quite right so
any actually any men that there listen
to your mother I didn’t realize that
would get so I got there eventually
yeah thank you thank God anyway one of
the things so the first couple of years
you know I wasn’t coping well Anthony
was more lucid there then so it wasn’t
it was harder to leave and go home or
take him home in the wheelchair taxi in
the same goodbye was absolutely you he’d
cry had begged to go home you know I’m
sure many people in the audience of
experience that awful heartbreak of yeah
so that after about two years it became
totally impossible to take him out or
maybe two and a half years and then I
thought okay we have to do this
differently so I started to make myself
at home in the nursing home
whereas before my visits had been I
guess I I was dreading I dread the
visits because I knew when I went to go
home it would be heartbreaking first I
found myself avoiding visiting and so
when I turned it around and made myself
at home in the nursing home room it was
just it was like an epiphany of sorts
you know I stocked the cupboard with
bran
with kyun why you no no nothing no
nothing so that we could invite people
over and and I’ve had nibbles in the
Donmar teas and avocados and I’d have
stuff in the cupboard it’s to sustain
myself but also if people dropped in it
was like home and yeah it took cutlery
and glasses and just familiar Cutler in
Brussels events and he recognized not to
trick him back then because he he did
know the difference between the nursing
home and home
whereas now he often thinks he is at
home
I take DVDs comedy series that he likes
he loves Michael Jackson and so got the
Michael Jackson DVD and visitors like my
mother who is here are feel really
welcome and it’s wonderful and I feel
content happy in the room it’s
comforting Francie his eyes just light
up when he doesn’t have much expression
because of the Parkinson’s disease mask
I take my paperwork in to do so I take
my writing in to do so that I may I have
made myself at home there and sometimes
I actually can’t wait to get there
because I mean I’m often on the farm
alone all alone and so it’s actually I
don’t really get lonely but that alone
feeling sometimes gets to me that is
lonely whereas in the nursing home
that’s always something happening in
there people around so it’s and I’ve
made friends with a lot of staff of
course so it’s fun ok I’m just going to
give you an example of a typical
sentence
from Anthony because again I’m talking
about the dialogues that we share ok
this is typical can you put that kettle
on the cat before the volcano helps us
hose the garden so that that’s just to
illustrate the kind of thing he might
say I can my answer to those kinds of
questions is always yes and often I’ll
just go I’ll go out of the room
and walk around and then come back in
and yeah I’ve just done that I’ve done
that but when once upon a time I found
this hard I think people do find hurt
this hi nice to go you’re totally mad
and you know it would always cause well
occasionally I mean that’s the thing
there’s no strict one way or the other
sometimes when I absolutely can’t
decipher what he’s saying especially if
the words aren’t even coming out just
syllables I’ll say it took so much crap
and he will just get that smile this he
he can’t smile or laugh where he used to
because of the Parkinson’s disease
affecting his muscles but he’s got this
amazing slow smile and he loves that
having the Mickey taken out of him
some reason always has and the whole
love thing he’s we never used to be
lovey dovey smoochy Ruchi couple but now
I hold his hand a lot because it’s just
that tactile contact is he’s great but
he’ll often take my hand as if it’s this
is what he’ll do he often does that and
I’ll say something like what’s wrong
with my why don’t you want to hold my
hand anymore and pretend to be her and
he’ll say it’s just so tiring
[Laughter]
and because he doesn’t really get where
he is he he when I arrived he often said
something like how do you always know
how to find me he often thinks he’s at
the Rose hotel or at a party or a
boarding school so his orientation slips
between the era’s as well as places the
other day he said a beautiful thing to
me I entered the room and I came into
focus and he said wonderful wonderful
wonderful beautiful beautiful beautiful
I was just trying to summon you okay so
going with the flow what we usually do
is go with the flow so uh after you’ll
say I’ve just run sixteen kilometers
fixed all the fences and I’ll say oh
that’s we look so tired which is of
course why why I contradict him and it
makes him feel good you know and and
robust he thinks he’s getting better
I say yeah of course you’re getting
better he thinks he’s getting skinnier
that he has got a beautiful body and I
say yes well he he’s pretty like
diminished since he used to be a bit of
a much of a thing but now he’s really
skinny but I don’t you know I don’t like
he loves his washboard he keeps me just
keep now we keep raising that up and
keeping make sure that he has his
beautiful yeah and I eat lost but not
intact giving him chocolate which is
vacuum sound and then no no no more like
I don’t want to ruin my beautiful body
and the way I’m saying it those
sentences actually don’t come out as
fluidly as the way I’m saying yeah
because he struggles very much with
speech and that’s why I write them all
down a lot of humor as you can probably
tell ask Christmas which I decided no
presents because the answer he doesn’t
really get that anymore
so Christmas Day I said I’m not doing
presents you know that and Anthony
actually pretended to be really
disappointed and I said we didn’t get me
anything
okay and he said yes I took a calculated
risk Thanks he just comes out with this
my father blessings going to the flows
and always doesn’t always work however
because we’re his mum is the question
that he asked every week now he’s 81 I
think I said that his mother has died
I’ve never met now usually I’ll say he’s
she’s home with me or she’s visiting
someone but one week he said to me why
do you keep refusing to take me to see
mum why and I you know I had to break it
to him and then he was shock was
horrible he was shocked grief-stricken
and then embarrassed that he’d forgotten
and extraordinarily the next day he said
as I entered his room he said by the way
mum is not dead
so so it’s that kind of awkward topic
home and his mother those topics are
very difficult because they distress him
so I do diversion now so the other day I
just said when he said where’s mum I
said you’ve got such a big nose and then
he says you just want to see me naked
two minutes
salaries fabulous I love the idea
fabulous
okay so and you can make things up I can
make things up why not
so when he asked me I didn’t
deliberately do this it just popped out
when he asked me one melbourne cup day
if we’d won any money I just said
without thinking yeah $20,000 however I
know this is a little bit unethical but
he it popped out and you’re making so
happy as a farmer loves money and
trouble is he started telling Oh
everyone so then I had to perpetuate
this lie and I even had to lie to you
didn’t go down with us – where was it –
week he was a poor I thought I had I
could bathe in $20,000 and I don’t know
buy this that or the other but no my
mother did lie to me in it but in the ED
but once again that had a better had a
really good effect on dad even though he
still hasn’t got the mental food is
another tough wonderful talk of a topic
of conversation in the nursing home as
well as for real real food and my very
clever way I think of leaving to go home
now is to say what do you want for tea
we make a list I name all the beautiful
stuff with your loves crayfish oysters
and then I go home and it almost never
comes back to bite me
sometimes he I think only twice in the
last three years has he said you didn’t
come back mostly I go home he waits
expecting the crayfish and oysters but
isn’t disappointed because by the time
teat I can’t
tea time comes he’s in the sand at
sundown in phase which is the more
confusing part of the day so he’s
forgotten there’s a lot of long works
really well it sounds like there’s a lot
of lies and deceit but it’s it’s all for
the necessary yes
we were out of time so one last he
always knows who I am and that Ming is
the first of the two of us to not be
recognized hilariously if you did catch
us me my little five minutes so our five
minutes of fame on the radio and ABC
that was pretty exciting I briefly
mentioned the day before I went in to
see him didn’t really I wasn’t looking
forward to I wasn’t not looking forward
to it I go and he thought I was the
hairdresser
now the hairdresser’s a middle-aged
female quite rather attractive and he
told me yeah you’re a bit of a good
bloke Antony and if you need to know who
I was but then I slowly you know jogged
his memory I felt like I had to and then
he um he did get it that it was me and
it was nice not to remind him that I
came from his genitalia and all that
sort of and start saying that that’s
between me and Dad a good funny and he
yeah he got it but then there was that
negative you know even though I got that
all on one Chickahominy he wanted to go
home so you’re right but I think what I
admire about Ming is a lot of people get
so wounded when they’re not recognised
and he’s handled it so well okay a
person with dementia is not a person who
is dead and gone thank you very much
[Applause]
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