August 17, 2025 • 49 mins
In this episode, Aron opens up about honouring Angela’s care wishes and planning her farewell. Joined by Trish Fleming, Social Worker and Community Liaison Manager at Hospice West Auckland, they unpack what it really means to take control of future care decisions. From navigating difficult conversations to finding peace of mind in clear choices, this discussion offers practical and gentle guidance for anyone facing life’s toughest moments.
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Episode Transcript
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Unknown (00:04):
On October 17, 2023 the bright more family's world
was turned upside down when atthe age of just 44 a tumor was
found in Angela's brain.
One month later, they wereintroduced to the world that is
hospice. This is Angela's storywalking the final path together
a hospice West Auckland podcast.
(00:28):
Hello and welcome back toEpisode Four. Last episode, we
explored how Aaron and Angelasupported their children and
their families through thisjourney. And this week, we're
going to talk about future careplanning, how you had
discussions and worked throughall the things you needed to
work through at this part ofyour journey. Today, we are
(00:50):
joined by Trish Fleming, who isone of our social workers by
trade, but you also havemultiple hats in this workplace.
Welcome Trish, thank you forjoining us. Thanks for inviting
me, and thanks for having me bepart of this story tonight.
Yeah, what is your title here?
It's community engagement. Andas Esther said, as you said, I'm
(01:13):
a social worker, and I've beenin the palliative care space for
nearly 20 years talking withpeople about the myriad of
things that need to beconsidered when families are
facing a journey such as you didwith enduring your children.
Yeah, yeah. And Trish, you'vebeen with hospice West Auckland
for a number of years, and hadyour role as a social worker and
(01:38):
then worked into these differentroles as well, haven't you?
Yeah, so helping people to thinkabout the things and put some
plans in place, things likeadvance care planning, perhaps
things like wills, things likewhat our future goals and wishes
are going to be,you know, and thinking of all of
that from a holistic sense,and guiding people to walk
(02:02):
through that process,not things that people generally
want to be thinking about. A No,yeah, and, and there's a lot of
stuff comes up, yeah, yeah,yeah, there's, and you're
exactly right, and it's, andit's stuff that you you don't
want to think about. But wasthere stuff you've never thought
about before? Like, you know,there's so many people out there
(02:24):
that, you know they, they knowthat you should have a will,
yeah, but no idea how to, how toget one, or what's actually
involved in things like that.
And then, like you said, beforeI can advance care plan. Like,
what is that? What is that, youknow? Like, what does that even
mean? Yeah, so there was lots ofstuff that, you know, and
(02:47):
especially for Andrew and Iwould like with a blended
family, you know, in wills andthings like that. Like, what?
What happens with all of thatstuff?
Yeah, it's a it's a lot that's alot to take on while this other
massive thing is kind ofhappening as well. It's like,
Oh, great. So we're dealing, youknow, we're dealing with, with
(03:09):
this illness and the outcome ofthat. And then, hey, also,
there's a lot of admin that you,you know, that that we need you
to kind of manage as well. Soyeah, and a lot of the admin is
things that you, like you said,you haven't thought about, but
also you might not want to thinkabout at the time when you're
(03:29):
going through it, but it'sequally just as important. Yeah,
Trish, can you talk to us?
You've mentioned, Aaron, what aAdvance Care you've mentioned
the word advanced care plan.
What on earth is that, yeah,look, it's a holistic document
that helps a person to thinkabout what they would like to
have happen for their care astheir illness progresses, and
(03:54):
not something that we want tosit it's a confronting thing to
sit down and do, right?
I do, I have had, have developeda respect for the process more
than the outcome. I think thatactually being together and
being able to have theconfronting conversations, but
also to share this is what Ireally wish for, which might be
(04:17):
a surprise sometimes, right?
Yeah, and, and to go throughthat process and almost journey
together. A little lady I metrecently in a care home was
telling me that she didn't wantto sit down and do that. Why did
you give me that book? But thenshe said she's been getting up
each morning, just in the quietbefore the care home gets busy.
(04:38):
She has a cup of tea, and shehas a little bit more of a look
and a little bit more of athink. And then when her
daughter comes to visit in theweekend, she shares, you know,
where she's got toSo, yeah, there is a thing about
the process, yeah, and I mean,like, I mean,
it was confronting enough forme. And.
(05:00):
And, and, you know, I wasn't theone with the weird, terminal
illness, so can only imagine,you know what, what it was like
for Angela or anyone in thatkind of situation, because you,
you're kind of pre empting this,this future that you know
doesn't have a good outcome.
Yeah, you know, you know, youdon't know when that is, but
you're, you know, you're kind ofexpressing your your final
(05:21):
wishes. And I,I remember having a conversation
with Angela very, very early on.
And I think we just finishedwatching afterlife, the Ricky
Gervais series were amazing. Andin a lot of that story is his,
(05:44):
his wife, obviously has hascancer. But before she passes
away, she's made him videos, andshe's she's talking to him, and
you know about what, what shewants for him, and all of those
kinds of things. And so Angelaand I had watched that long
before her her diagnosis, butwhen it kind of came around, I
youhave to be careful how you bring
this up, you know, because youdon't want to be like, hey,
(06:07):
like, you're going to die soon.
Like, you know, let's talk aboutthis, yeah, so, you know. So I
kind of said to her, like, youknow, is there, is there
anything that you'd like to dofor the, you know, for the kids,
for me, you'll, you know, foranybody. And you know, we, we've
seen the videos that that RickyGervais, his wife, made,
(06:30):
and she said that that's that.
That's a great idea. I wouldlike to do that. And so
into that's cool. We'll, we'llleave that there. And you just
let me know, you know when,where you want to, kind of when
you want to do that. And then asit kind of progressed, and as I
could kind of see, you know thatactually things are changing.
(06:56):
And I and I said to her again, Isaid, Have you, have you had a
chance to think about what youwant to do and what you want to
what you want to say, especiallybecause the, you know, the
Taylor, our youngest, you know,was nine at the at the time, so
you know what, what do you wantto say? And, and I think, you
(07:18):
know, she did lots of things,you know, funeral planning and
things like that were, you know,like the, I would struggle to do
those things, but I thinkactually having to talk about,
you know, and make a video tosay goodbye, you know, which is
what she's doing, yeah, youknow, there she found, she found
that really, really hard. Andthen obviously the decline kind
(07:39):
of limited her and what she andshe wasn't able to do that,
but just yeah, just to beconfronted with that and be
like, I'm saying goodbye inthese, you know, and even with
the care plan, like I'm writingdown all the things that I need
to happen for, and in somecases, that I'm not even going
(08:00):
To be here for you know, andthat that's, yeah, that's,
that's full on, yeah, I canimagine, on one hand, it's
really confronting to think andaddress the inevitable, but on
the other hand, it could bringyou a sense of empowerment being
able to have that say, I mean,what's important to you what
(08:21):
matters, what you would andwouldn't like, maybe some peace
of mind for Angela's family aswell, in terms of you being able
to see what she's written andknow, yep, under and the right
thing, because Angela's writtenthat this is important to me,
and I think that's what thatlovely lady was saying in the
care home, that you Know, she'sable to put her voice into that
(08:42):
and, and, and have her say aboutwhat she wants to have happen.
There's also been othersituations where I've worked
with families that there's beenquite a difference of opinion.
And so the advanced care planor, and it doesn't mean it
doesn't need to be thatdocument, right? And, and you
had advanced care planningconversations with her your own
(09:03):
way, right? Yeah,because you felt it was
important to elicit from herwhat she wanted so that you
could support that. And I thinkit does help people. If there is
a difference of opinion ormisunderstandings, it's like,
Oh, yeah. Oh, that's what mumwants to have happy, yeah, yeah,
yeah. And so the big, the bigthing for us, well, the big
thing for Angela, actually, is,was when it and especially when
(09:26):
it came to, when it came to herfuneral, right? So
we were very lucky that a verygood friend of ours is a funeral
director, so we were able toapproach her and have some
conversations with her veryearly on and and this was all.
This was guided by Angela andher, and so she would have those
(09:49):
discussions. And when, whenpeople found out that she was
that she was having thosediscussions and she was planning
her funeral, some people werejust like, we.
What are you doing? Yeah, whyare you doing that you should
be, you should be living life.
You should be. And she'd be. AndI remember being part of one of
those conversations, and shesaid to the person, she said,
Hey, like, this is my life. Thisis my life now, like, and, and
(10:14):
what am I going to do? Not planany of this. And and leave
Aaron, who now has, you know,four kids, and has just lost his
wife. I'm gonna let it sort itout. Like, how, how was that
fear, right? And so, so that,that was her, that was her
driving goal. Did she want to doit? Maybe not right. Because,
(10:38):
again, like it's quiteconfronting, but the but the
outcome of that, and for me as afor me as a person, I was so
conscious of, of making surethat everything was right and
the way and everything was theway that she wanted it to be,
that like it was one of the bestthings that that she did for us,
(11:04):
and not only for her, becauseliterally, everything that
happened at her funeral was whatAngela wanted,
the music the you know, we oneof her favorite karaoke songs
was Adele. We sang Adele, youknow, the whole congregation, I
guess you call it, whatever youcall it, sang a Deb, awkwardly
at first, but then, you know,got into it. But that's what she
(11:27):
wanted. And,you know, and so that I
remember, you know, I thought Ihad it all, you know, like what
she was, you know, she chosewhat she was dressed in. Now,
I wouldn't have chosen that forher, but that's what she wanted.
And so, like, I was like, Oh,that's good, you know. Okay,
(11:50):
yeah, that's that. That's thatsorted. And I remember getting
to she was at the she was she'dpassed away, and she was at the
funeral home and and our funeraldirector said, well, Aaron,
what, what lipstick Do you want?
Do you what color lipstick Doyou want her to
wear? No idea, she didn't writethat. She didn't she didn't
write that down. And so that wasme going, what if I choose the
(12:12):
wrong one? What if? What am Igoing to do? You know, in this
state of, you know, it's a fewdays after she's she's passed
away, not wanting to get itwrong, not wanting to get it
wrong, you know, but, but shehad, like I said, the music, the
just, you know, the casket. Nowshe'd always said, I just want a
plain pine casket. I want all myfriends and family and all the
(12:35):
kids to, you know, paint theirhands and stamp their hands on
it and write a message. Sothat's what we did. And and
that meant that for kind ofthree, four days after she
passed away, our house was justfull of of people that just
wanted to come and be part ofthat, be part of it. So you had,
you know. So there was kind ofalmost this, this support during
(12:58):
this really awful time,you know, and so, so we got all
of those benefits, but that wasperhaps because that's what she
wanted to, you know, and shedidn't, she didn't want to see
the casket. So when we went to,you know, when we went to
to see where she was, was goingto to lie,
(13:21):
we went and looked at the it wascalled the cottage. And we went
there when, when she was stillhere, and she was like, Yeah,
this is nice, and I'm okay withthat. And then remember the the
funeral director saying to us,do you want to see the casket?
She was like, nope, yeah. Butthis is what I want. And and
after that, then we went to thewe went to the, the
(13:44):
chapel, let me call it. We wentthere. And I said to do you? Do
you want to come inside? Nope,you know. So she did have, she
did have boundaries of, youknow, like, No, I don't need to
see that, but this is where Iwant it. This is how I want it
to pan out. But I don't want to,but I don't want to see it. But
(14:04):
was it for you as Angela'shusband,
going through that once youpassed away, and having almost
like a road map, a road map thatshe put together for you, right?
Just all of this, there was justno once there was no stress,
because obviously, you still,you know, you still have to
(14:24):
execute her plan, and you stillwant it to be right. But I don't
have to think about it. Wasn't awhole lot of choices, because
she'd made to she'd she'd doneit. So, you know, I had, she
together, we had come up withall the playlists. So when you
know, and you know, we both lovemusic, so she had chosen songs
and when they were going tohappen and things like that,
(14:49):
you know, there was a there wasthere was photo slide shows, and
she'd been a part of that,you know, she, she had had,
you know.
The eulogy had had been read toher so she knew what was going
to be said. I read my speech toher. I had a quiet before
everyone got up in the morning,and I
(15:11):
went and sat with her, and Isaid, Do you want do you want to
hear what I'm going to say? Andit's one of the hardest things,
yeah, ever to do, but, but Iwanted her, I wanted her to
know, to know, yeah,and, you know,
down the track, I've kind ofthought about it now, and I
(15:35):
always think, like,why don't we do it when they're
here? Do you know what I mean,like this, this celebration that
they that they can be a part of,like, I think you know, and get
to hear this, the the amazingtributes that people, they
didn't, people know. How wouldthey are to say, Yeah, and we do
it after they're gone, yeah? Butno, it was a it was a massive
(15:57):
relief. And I think ultimately,she did that, you know, said,
like, it's confronting, youknow, and that's where she had
her limits. No, I don't want tosee the casket that I'm going to
be in, but this is, you know,this is, I'm taking you this
far. I'm taking you this far,but I'm but ultimately, I think
she was, she was doing it forme, you know, because she knew
(16:20):
thatthere was already enough going
on. I don't you know if I canplan this and also have it the
way I want it to be. Then,that's then, that's what I'll
do. Yeah,I'm thinking as well around it
sounds like you and Angela wereable to have these open
conversations and talk asdifficult and confronting as
(16:44):
they were. You had theopportunity to do that. Trish, I
imagine there are lots ofscenarios where maybe it's not
as open a conversation, or thereare differing opinions. Yeah.
How do you manage that whenyou're going in to support
whanau? I mean, that's anexcellent question, particularly
for those people who may nothave someone to represent them,
(17:10):
but but also, like Aaron, youmentioned you have a blended
family. You and Angela, somepeople have blended families
where there is a lot ofdifference of opinion,
and so being able to notnecessarily get things down in a
document, but at leastfacilitate conversations where
you can represent the voice ofthe person doesn't always go
(17:32):
according to plan.
But you know, another situationEsther that you know it needs to
be talked about, really, is ifsomebody hasn't got capacity for
their own decision making, youknow, and towards the end of
somebody's life from illness,they usually will lose that
ability. And so it is. It'sdesirable to have someone that
(17:52):
you trust to represent yourwishes and to speak for you
really. And often, people willdo that as an EPA, enduring
power of attorney,and it would be with that person
that you would share youradvanced care plan if you'd
completed it, or at least whatyou've written on the back of
the survey. What it is that youwant, the conversations the back
of the survey, yeah, this iswhat I want. This is what's
(18:14):
important. Yeah. And we, youknow, we were before this all
happened, we were those peoplethat were like, oh yeah, we kind
of have an idea of what's goingto happen, you know. Like, you
know, what will happen with thekids will, you know? Like,
they're probably going to be,you know, they're probably going
to be adult. And what does itreally matter? And then when she
got, when she got diagnosed, itwas like, Oh no, actually, what
(18:38):
are we? Can we? What are wegoing to do? And so we kind of
had the bones of of a will and,and so these were all of the,
you know, I said the adminthings that now we had to go and
get wills, and we had to go andwe had to go and get
letters signed that said, Angelais of sound mind to make these
(19:01):
decisions. And while we didn'tknow it at the time, the clock
was ticking, right? Because itwas only going to be a few more
weeks from when that was done,that actually she wasn't going
to be able to do that. You know,not that she wasn't. It was
sound mind, but she she wasn'table to communicate or in
medications and people'sthinking and frailty and fatigue
(19:23):
and and all sorts of things, youknow.
And the the added complicationfor Angela was the time frame,
yeah, and how things progressedfor her, yeah. And it makes me
think around, you know, I, Ipersonally should be making
these plans, or at leastthinking about the and setting
(19:43):
up a power of attorney now sothat, if God forbid that
happens, we've got things setup. Yeah, that did Angela have a
power of attorney? Yep, yep. Soall of that was set up. So I
was, I was power of attorney,and I.
You know, and thankfully, likeit all just went, you know,
according to plan, andeverything is kind of carrying
(20:06):
on as, you know, as it shouldbe. We're quite lucky. We didn't
have those, you know, that doesthe bumps and the disagreements,
and, you know, this is mine, andthat's yours, and all of those
kinds of things. So we don't,you know, make it. We kind of
don't have that. And I thinkthat's probably due to the age
we are and, you know,but, but, yeah, so, so we had to
go through all of that. We'revery lucky that, that we have a
(20:30):
family member that is, that is alawyer, so we were able to kind
of get that stuff done quite,quite quickly, because that's a
really complex minefield forpeople, and it's pretty anxiety
invoking, well also because,because we have a family member
who is our who is our lawyer,they were able to say, hey, you
need to do this. And you need todo this otherwise, if that was
(20:53):
just me and Angela by ourselves,without that, you know, inside
knowledge, I guess those thingswouldn't have happened, who just
wouldn't have known and andagain, they're kind of things
that get because Angela'sillness is, yeah, is the core
focus. Those things would havejust gone, forgotten about. So
we were, we were really luckythat there was, we had someone
(21:15):
that was able to go, hey guys,we need to do this. You know the
sound of the document to saythat she's of sound mind,
I would never have thought ofthat, you know. And so actually,
no, we need to do this, and weneed to do this. And, you know,
so we were really, really luckythere. Obviously, not everyone
is, is that lucky? But theother side of it is people, you
(21:35):
just don't, you don't know whatyou don't know, no, and it is,
you know, when you sort of mapout that kind of legal, medical,
financial journey, adminrequirements, I think you talked
about, you know, in the firstinstance, Aaron, there's a lot.
There is a lot to navigate andand people don't know because
they're not, you know, theydon't need to know when they
(21:59):
don't need to know exactly. Andwe had, you know, we had some, I
don't know if they'recomplexities, but Angela, very
early on, wanted to donate. Shewanted to donate her brain, as
you know, she wanted todonate organs and things like
that.
She didn't get to, because it'sstill quite a complex process,
(22:23):
but we had to manage that aswell and get our heads around,
okay, well, how does thathappen? Who, you know, who do
you contact, and and all ofthose kinds of things. So, yeah,
it just becomes like a anadministrative minefield, and,
you know, you're trying torespect this person's wish is,
and, and do the best that youcan for them. Well, you know,
(22:46):
these two big trains are kind ofrumbling on. There's the admin
side and, and we've talkedbefore about the
normal life carrying on as well.
So you're going left blows inthere. And, yeah, it's, it's
very formative. Comes that wholeanother facet of this really
complicated care, medical familylight and how you're adjusting
is you keep moving along thetrains, right? Yeah, with that
(23:09):
continual change. Aaron, we'vewhen we talked with Charlie, we
talked about that kind of care,planning and finding out in
Charlie's first few visits, whatwas important to Angela, what
was important to you, and howcan you know we make sure that
we help with that, but also foryou to know what's important to
Angela, and I think that relatesquite closely to the advanced
(23:32):
care plan. All those discussionsaround you know, what does
Angela want if something changesto her medically, and does she
want to go to hospital? Does shewant to remain at home and move
to comfort? Cares? Did you havethose conversations with Angela
and how did they go? So I thinkwhen it came to, when it came to
(23:53):
practical, the practical side ofthings, Angela was very, was
very open. And, you know, andyou know, talking about her
funeral and things like that,she was very open about persons,
the emotion sides, and talkingabout the kids and things, yeah,
that she found quite hard.
But in terms of practical stuff,let's talk about that, because
(24:15):
that needs to, you know, thatneeds to be talked about. And
so,you know, her big thing was, is
I want, I want to be lookedafter at home. Yeah, I don't. I
don't want to go to hospitaland,
you know, and from my point ofview, that was, that was, that
was just never an option, youknow.
(24:37):
And I never thought of analternative. Do you know what I
mean? Like, it was like, well,she'll just, she'll just be
here, you know? And I think, youknow, when we, we talked with
Charlie and, and I said, like, Ijust, you kind of, kind of shift
from husband mode to carer mode.
And, and this is what I did.
(24:58):
There was no like, Okay, well,what?
Happens later on, when, youknow, if she gets really, really
bad, like, and you can't lookafter her, that just wasn't even
a, just wasn't even a thought.
It was like, she wants to stayat home, that that's what's
going to happen. And I'll doeverything that I can to make
sure that, then, you know, tomake sure that that happens. But
yeah, we were pretty, you know,she was pretty, like I said,
(25:19):
when it comes to practicalconversations about what do I
want and how do I want things tohappen, you know, there was,
there was no issues, you know.
And she was more than happy tomore than happy is probably not
the right term, but you know,she was comfortable having those
conversations, which, you know,for me, like I can, like, just
(25:39):
can't thank her enough for, youknow, for that, because it, you
know, I'm a kind of logistics,kind of brain type person where
I just, I need, we've got aplan, and we've got these steps,
and we're going to go throughthem all. And, you know who,
recognizing that and being ableto go, this is what, this is
what I want you to do, and thisis what we can this is what I
(25:59):
need you to do for me was, youknow, was massive, and people
often do talk about that. It'slike, you know, thank you, Mum,
you left us a plan. Thank you,you know, whoever, yeah, for,
for letting us know what youwant, giving us a plan. It's
good. We use that term roadmapbefore, you know, steering you
through. I think it's, you know,the comment that you made about
(26:21):
much more difficult to havedone, perhaps the legacy stuff
for the kids, for the future.
And you know, that's wonderfulthat you had that conversation
about that. Yeah, yeah, yeah,yeah. In the in the end, we
didn't, we didn't get videos,but we Cherie
was actually meant to sit downwith her. Unfortunately, when
(26:43):
they were about to do it, Shereegot covered and had to go home.
So a friend of mine sat withAngela for a good couple of
hours, and and and wrote cards,notes for the for the children.
Angela obviously couldn't writeand and my friend had to kind of
decipher what she was trying tocommunicate. But we, you know,
(27:05):
but we do have, we have cards.
So the so I have a card,my boys, Angela's stepsons, they
each have a card. And the girlshave and they they had a next
birthday card. They've got a21st card. They've got a first
baby card, they've got amarriage a first wedding card,
and things like that. Andthey're thankfully to Charlie,
they're locked away in afireproof box because I told
(27:28):
Charlie about these cards, andshe said, where are they? And I
said, I've just got them at homein a plastic bag. She said, What
if the house catches fine. I waslike, Well, great. Chad, yeah, I
hadn't thought about that.
So I went straight away andbought this fireproof box, and
so now they sit in there, butnurses think of everything,
(27:49):
yeah, really, um, you know, theylook, I like to say that problem
focus, because they look forwhat could potentially go wrong,
and then put the solution. And,yeah, yeah, so, so, yeah, I am
very thankful that she, thetiming was a little off, but,
you know, but that's okay, but,yeah, but the girls and the boys
and myself now have, you know,we now have these, these cards
(28:10):
of, you know, that Angela has,has
written for us. So that was, youknow, so that, again, she's,
she's written these four eventsthat she's not here for, you
know, and she knows that she'snot going so to to write those
things must have just beenincredibly hard, yeah, but, but
(28:33):
all so there must have beensomething for her about this is
what I've got to give now forthe Future, and it will be a
lasting gift day, yeah, yeah,absolutely. But a sweet moment,
yeah, yeah, but a sweet moment.
And another facet, in the midstof all of this, I'm thinking,
Angela's in her 40s. You're bothworking professionals raising a
(28:54):
young family. All of a sudden,Angela can't work anymore? Yeah,
you're probably having to thinkabout, you know, pulling back
from work or giving up so thatyou can care from her. So how do
you manage suddenly going frompotentially two incomes to
(29:14):
whatever happened next? So Ithink, I think I've mentioned
previously, so obviously,we went to the hospital that
that day, where we very firstfound out that she had a mass in
her brain. That morning she wasgetting ready for work because
she never went to work againfrom that day on, you know. And
early on, there wereconversations of, oh, well, you
(29:36):
know, two weeks after, after thebiopsy. Well, you know, you
could probably go back parttime, and, you know, after two
weeks, and we'll see how you go.
But no, she, she never went backfrom, from from that day. I
didn't go back for three and ahalf months. And.
(30:00):
Yeah, I and I said this toCharlie when we spoke to her,
what, what my my work, basicallyjust said, may you you do what
you need to do, and we're herefor you,
and we'll just see you when wesee you, and, you know, like,
(30:23):
and to my to my boss and hisboss, that's, you know, it's
probably not that big a deal.
You know, it didn't take a lotof kind of thought. They just,
you know, they might have signeda piece of paper to say, yep,
that's okay, but,but to us, and I remember
getting the phone call from,from my boss's boss, to say,
Look, you will see you when wesee you. And and
(30:49):
I remembered just wanting to,and I said this to Charlie
again, like I just wanted totake the feeling that that was
and just give it to him, yeah,just be like, This is what, this
is what that means to us, yeah.
And yet what, and what thatmeant was that she didn't have
to go to hospital, she didn'thave to go somewhere else. We
didn't have to we didn't have toget kind of carers to look after
(31:10):
her and things like that,because it meant that I didn't
have to worry about money or orgoing to work, or any of those
things she could her and thekids could just be
my focus. And,you know, and I'll forever be be
thankful to, you know, to those,to those goals for that you
(31:32):
know, as it's a wonderful waythat employers and organizations
can contribute like you'vedescribed, that you wanted to
just make him know what thatfeeling was, how much it meant,
you know, that's such asignificant way that they can
provide support. Yeah, I'm notneeding to do very much. Yeah,
100% Yeah. And at the time,like, it's not like I I'd been
(31:53):
there for years, you know, Ithink I'd been there 18 months,
you know. So in the grand schemeof things, did they owe me that
not, not at all good on them,you know, but again, just like a
small gesture that actually hadjust this wide ranging impact,
yeah, that allowed us to spend,you know, in the grand scheme of
(32:15):
things, was a very small amountof time, but we, we got to spend
as much time possible with herbecause of, you know, because of
what they did. So, yeah, becausethat job insecurity, or the
financial insecurity, or thefinancial strain, because you've
had to give up work, or you'rebalancing, like you said, do I
work to pay the bills or spendmy time with my loved one. Well,
(32:40):
something we say often, hey,yeah, how? What's your role in
that truck? Well, I guess ourrole in that is to help people.
Well, first, I think if we talkabout that whole admin journey,
right, the planning journey ishow you save money by actually
getting your head around whatall of that is, as you're coming
down that train track towardsthat space. And, you know,
(33:04):
people, if people have notaccessed maybe Work and Income
support ever in their livesbefore, that's another arena to
navigate, yeah, and to factor inand, and, you know, just that $5
part charge on a prescriptionfor some whanau that can really
tip things over the edge. And sowe do see people who are needing
(33:26):
to maintain, you know, as activea work life as they can,
particularly if they've lostincome from the home. Yeah,
yeah. Continence products costpeople. All sorts of things cost
people. Yeah, yeah. And, I mean,in the money world, like, you
know, I remember, like, theinsurance situation, the life
(33:47):
insurance situation, and, youknow, we got the initial
diagnosis was, you know, 18months to two years where you
can't, you can't claim oninsurance until, I think it's
maybe six months, you know,okay. And so we were like, Okay,
well, that's no help, really,any help, but okay.
(34:12):
And then, you know. And thenthere's the key, we save the
stuff and, you know. And there'sall that admin side of it as
well that you might Okay. Well,now I've got to kind of chase
that up. And, yeah, there's justall these things again that you
just, you just don't thinkabout, and people ask questions,
like, you know, what's probate?
What's intestate? How come Icouldn't get them I need from
Deb out straight away. I didn'tknow I was going to have to
(34:36):
front load the cost of thefuneral before, you know, the
money would be released from hisaccountant. So Esther, how do we
navigate that? By trying toraise people's awareness about
that that, you know, these arethings that we're going to have
to think about. Yeah, yeah. Andsometimes that starts before
they enter hospice care. Hey,yeah. Because if you know, in
hospice, when somebody gets.
(35:00):
Admitted to service that willintroduce them to the advanced
care plan. We'll try and have aconversation about power of
attorney and yeah, and get thelay of the land and give advice
on that. And the social workers,you guys play such an incredible
role in advocating for andsupporting patients of whanau
through that journey through thesystem, yes, right? Yeah. It
(35:21):
sounds like Aaron, you guys hadsuch incredible supports around
you in your network. And sosometimes I think a social
worker will have really minimalbehind the scenes, and other
times, you know that they'retaking people to help advocate
you. Of them at work, income,well, you know, I mean, I
thought about one of your teamthe other day who really did,
actually, literally take someoneto work and income to help.
(35:43):
Because, you know, for thatperson, it was a frightening
system just getting theappointment sometimes, you know,
we're not this is not to bagWork and Income, yeah? But you
know, it's a system that, yetagain, people don't know about
that, that you have to find outabout while you're doing
everything else that you'redoing. Yeah? And we talk about
the planning for the future,planning ahead in Angela
situation, you've, you know, asa three months from admission to
(36:06):
hospice throughout. So I thinkyour current role, Trish also
talks to then what we do in thecommunity to support or provide
information to people beforethey get to us. Yeah. I mean,
it's the same common themes ofpeople unaware of, you know, the
things that need to happen andthe things that they need to
(36:28):
consider, and the same questionscome up. And so, you know, we do
a lot of public speaking to helpwith that, and not just perhaps
in the aged care sector, butjust in general, these are real,
growing interest where peopleare going. I think I do need to
know about these things. Andwhere do I get information from,
(36:49):
in a way that's easilyunderstandable. They've got the
advanced care plan and a herokaukaudi. So there's a Maori
version, recently a Samoanversion, and there is a Korean
version, so there's quite a lotof uptake. And like I said, it's
not necessary about filling outthat document, but it's just the
framework for a conversation.
Yeah, and, and, I think thething that kind of sticks with
(37:13):
me, one of the things thatsticks with me now, is we've
just been through all of thisand, and Angela has had these
conversations with with peoplein our family and friends and,
you know? And they're like,Yeah, you know what? I need to
get that sorted. And I need todo this. Some
of them still haven't done that.
It's like, you know? It's like,what it is, one of those things
(37:34):
where, whether it's, I don'twant to think about it, you
know? And until you're actuallyin that situation and you don't
have a choice, it's kind ofalmost like leaving your
assignment till the nightbefore, yeah, yeah, just
thinking guilty, really, youknow?
(37:56):
And my dad raised theconversation at dinner the other
night, actually, you know, hesaid, I just was, wanted to talk
to you about, I've revisited myenduring parent uni, and I
wanted to have a chat with youabout, and I thought, you know,
I'm like, Oh, Dad, are you okay?
Yeah, he's okay. He just, Iguess he's just knows he's
getting older, yeah? But it'snot just people who are older
who die. Is, where were you?
(38:18):
Yeah, I think we think as well,older people, potentially, have
had this their whole life toplan, which isn't always the
case. It can still catch you.
I guess I'm thinking with withyours and Angela situation, the
fact that she's in her 40s, andthere's not, probably been time
(38:43):
to plan, but there's childreninvolved, and there's there's
work involved in things that itreally that navigation, that
administration side of it.
There's so much that comes intothis that's,
we're not even touching, onAngela's medical side of things
(39:03):
and her symptoms and how you'regoing as her carer,
there's so much to plan and tothink about and consider.
I'd wonder how people can workthat out without having the
networks and friends and thingslike that. Yeah, look, I, you
know, like, if I look at, youknow, some of
(39:23):
the the older people that I knownow, I wonder if it's just, you
know, that you just, it's justnot something you talk about.
No, it's part of the problemhere, and you just don't talk
about it. And you you know, whywould I? Why would I plan my
funeral? Part of it is notknowing how to do it, and
especially, you know, in a worldthat's changed so rapidly, is
(39:46):
in, you know, not knowing how toaccess any of those things. You
can't just, you know, you can'twander down to the post office
to pay a bill anymore. It has tobe done online and all those
kinds of things. So,you know that, you know, does
that add some.
Complexity into it of well,okay, I do want to do those
things, and I know that I haveto do them, but I have no idea
(40:06):
how to do them, you know,because it's not something I've
had to think about and ofeverything I've got going on in
my life, whether it's dealingwith a end of a life limited
condition, or actually going towork every day and managing my
front time job and children,it's probably at the end of the
to do list, yes, the lowest ofthe priorities and sampling that
(40:28):
we put off, whether we want toaddress it or not. And I think
an interesting thing is theamount of times I do hear from
caregivers. And similarly, yousaid so, Aaron too, similarly,
that actually the sense ofalmost fulfillment or
achievement or pride and self orsomething, for thinking I did. I
did that, and I achieved that,for my family member, for my
(40:50):
loved one, the way that theywanted it done.
I, you know, a couple of people,I once spoken to a woman said, I
don't, I couldn't do it. I justdidn't think I could be able to
do it, yeah. And then, just likeI did it, yeah, yeah, yeah.
Well, you just,I'm making an assumption here,
but nine times out of 10 youdon't have a choice, yeah, it's,
you know, there's, there's thisfive day period between the time
(41:14):
that they pass away and the timethat, you know that the funeral
is, you got to organizeeverything, and, you know, and,
and we were, Angela washands on, right? You know,
whereas, I think, you know a lotof people, well, I'm just, I
don't, I don't want to talkabout it, yeah, I'm just gonna
(41:35):
leave it. And whatever happensafter I'm gone, you know, don't
you do this? Yeah? Well, yeah,that, that's the thing, right?
And, and, like I said, when, youknow, just even down to, to
dressing there, you know, like,it wouldn't have been what I
chose in, you know, but I'mthankful that she was like, This
is what I want to wear, and thisis, you know, these are the
(41:57):
songs I want to panel, and thosekinds of things to make it. And
I think what, and what it didwas it made it about her, and it
had, you know, like, you could,you knew that it was that it was
Angela's, it was Angela'sfuneral, yeah, and, and then,
you know, like, lots of peoplecame up to me afterwards, and
they were like, oh, and westarted singing. I could just, I
(42:18):
could just picture her up there,just looking down. Just be like,
you idiots. Look at you allsinging this song for me,
you know. And, yeah, she, youknow, she, she would, she would
have loved it, but that's, youknow, but that's also, in
essence, who she was. And I, andwe went to Angela, and I went to
(42:39):
a funeral a month or two aftershe'd been diagnosed. And it was
for it was, how did that feel?
Well, look, I said to her anumber of times. I said, Are
you, are you sure you want to goto this? Like, again, I
couldn't, you know, like, that'skind of, and at the time when,
(43:03):
when we, when we went, like, Idon't, you know, we didn't kind
of go as, like, a, well, let'sgo and see, you know, like a
scouting mission kind of thing,like information gathering,
yeah, it wasn't anything likethat that, yes, that kind of,
that kind of happened by, youknow, carry your fault, yeah,
yeah. But no, she was like, no,absolutely, I want to go and and
(43:24):
I think in in the thing thatcame out of it was when, when
we, when we left, she knew whatshe didn't want, you know? And
so she was like, Ithat that's not, that's not
where I want to go. And I thinkthat kick started, the whole
this is what I want, this is howI want this to go,
(43:46):
which, you know, it's kind of aweird scenario, but I think,
yeah, it was the kick start toget things kind of going. Yeah,
it's a really importantreflection on
the more we can talk about itand think about it, because
ultimately, death is inevitablefor all of us. We don't know
(44:09):
how, we don't know when, but itis something that that could
happen or that will happen. Andso to be able to have these
conversations and and actuallytalk with our loved ones and
maybe set a few things in placeto prepare ourselves and, most
importantly, prepare our lovedones to empower them to make
decisions that they know wewould want. Is really, really,
(44:33):
really important. And thinkingabout, you know, you know, early
on in our discussion, youmentioned about, you know, that
transparency with the children,yeah, yeah. And just how, how
pivotal Could you talk aboutthat? Yeah, and well, and, and
kind of following on from what,from what yesterday, just said,
like, if, ifsomething was to happen to me
today, I have a 21 year old, an18 year old, 17 year old, and.
(45:00):
A in a nearly 11 year old,am I? Am I leaving that up to
them toit? Would it? It'd be amazing. I
mean, it would certainly betalked about,
definitely, um, but again, akind of following on from, you
know, Angela didn't feel, youknow, didn't want me to be kind
of burdened with theresponsibility of planning
(45:21):
things. What? How could I dothat to them? And so, so I, I
already have one, I have a Ihave a funeral plan and and
the the form that I, that Ifilled in at the top of that
form, it says, This is to help,you know, relieve some distress
from my family for, you know,having to make decisions, you
(45:46):
know, again. And I think part ofthat is to kind of counter that
whole, what, what? Why did youdo that? Yeah, you know, and
we in terms of the kids, likethe the
the casket was, it was at home,you know, and it was, and it was
set up in the lounge,and, you know, and again, there
(46:07):
was all these people came toput, you know, to put their hand
print on, and, and, and Taylor,my, my 11 year old, was
conducting it, right, okay, evenone, you have to come over here,
and you have to get, You know,I'll paint your hand, and you
choose the color, and thingslike that. So, so they were, you
know, they, they were a part ofit in, in the other, the other
part was, initially, Angela hadsaid, why I don't, I don't want
(46:34):
to be at home, you know, when Ipass away, I want to go to the
cottage and things like that,has it got, as it got closer,
the kind of protective person inme was like, I don't, I don't. I
don't want her to go, you know,I want her to to be here. So I
said to her, you know, I said,My Love, would you know? Do you
(46:56):
think that it would be okay ifyou if you stayed here, and she
said, Yes. And so there was athree day, you know, three day
period, where, where she was,you know, where she was at home.
And so the kids could go andtalk to her, yeah, and go and
see her. And I think,I think because, because there
(47:18):
was no, because we never hidanything from them, yeah, you
know, because it was, they werethey were just, they were part
of the they were part of thejourney. You know that that and
the whole way they know, likeTaylor knew something's going
on, and potentially what wasgoing on in her head was so much
was quite different to what wasactually going on. So to be open
(47:43):
and honest, protect them still,but to bring them on that
journey, I think, probably isreally important. I love the way
you know, Angela wanted hercasket decorated people to lay
hands, and that gave space forTaylor, as she said, to
orchestrate that and be activein the way that was right, yeah,
(48:07):
yeah, so her Yeah, yeah,definitely, yeah. Thank you for
being so open with us, but alsotalking to us about how
the conversations that youAngela and the rest of the
family were able to have thatsound like although they were so
(48:28):
challenging and confronting andemotional,
they were all so very helpfuland and I imagine healing in
some phase as well. Yeah,absolutely. We'll end it there.
Yeah. Trish, thank you so muchfor joining us. Um, thanks for
sharing you know, well, thankyou for think of being here.
(48:48):
Yeah, it's a teacher. Um,to us all the best, too. Peachy.
Yeah. And in the next episode,we'll be joined by Cherie, who
is Angela's sister and played areally important role in
supporting Angela and Aaronthrough their journey, and I
can't wait to hear from her.
(49:09):
Thanks for joining us. You.
On October 17, 2023 the bright more family's world
was turned upside down when atthe age of just 44 a tumor was
found in Angela's brain.
One month later, they wereintroduced to the world that is
hospice. This is Angela's storywalking the final path together
a hospice West Auckland podcast.
(00:28):
Hello and welcome back toEpisode Four. Last episode, we
explored how Aaron and Angelasupported their children and
their families through thisjourney. And this week, we're
going to talk about future careplanning, how you had
discussions and worked throughall the things you needed to
work through at this part ofyour journey. Today, we are
(00:50):
joined by Trish Fleming, who isone of our social workers by
trade, but you also havemultiple hats in this workplace.
Welcome Trish, thank you forjoining us. Thanks for inviting
me, and thanks for having me bepart of this story tonight.
Yeah, what is your title here?
It's community engagement. Andas Esther said, as you said, I'm
(01:13):
a social worker, and I've beenin the palliative care space for
nearly 20 years talking withpeople about the myriad of
things that need to beconsidered when families are
facing a journey such as you didwith enduring your children.
Yeah, yeah. And Trish, you'vebeen with hospice West Auckland
for a number of years, and hadyour role as a social worker and
(01:38):
then worked into these differentroles as well, haven't you?
Yeah, so helping people to thinkabout the things and put some
plans in place, things likeadvance care planning, perhaps
things like wills, things likewhat our future goals and wishes
are going to be,you know, and thinking of all of
that from a holistic sense,and guiding people to walk
(02:02):
through that process,not things that people generally
want to be thinking about. A No,yeah, and, and there's a lot of
stuff comes up, yeah, yeah,yeah, there's, and you're
exactly right, and it's, andit's stuff that you you don't
want to think about. But wasthere stuff you've never thought
about before? Like, you know,there's so many people out there
(02:24):
that, you know they, they knowthat you should have a will,
yeah, but no idea how to, how toget one, or what's actually
involved in things like that.
And then, like you said, beforeI can advance care plan. Like,
what is that? What is that, youknow? Like, what does that even
mean? Yeah, so there was lots ofstuff that, you know, and
(02:47):
especially for Andrew and Iwould like with a blended
family, you know, in wills andthings like that. Like, what?
What happens with all of thatstuff?
Yeah, it's a it's a lot that's alot to take on while this other
massive thing is kind ofhappening as well. It's like,
Oh, great. So we're dealing, youknow, we're dealing with, with
(03:09):
this illness and the outcome ofthat. And then, hey, also,
there's a lot of admin that you,you know, that that we need you
to kind of manage as well. Soyeah, and a lot of the admin is
things that you, like you said,you haven't thought about, but
also you might not want to thinkabout at the time when you're
(03:29):
going through it, but it'sequally just as important. Yeah,
Trish, can you talk to us?
You've mentioned, Aaron, what aAdvance Care you've mentioned
the word advanced care plan.
What on earth is that, yeah,look, it's a holistic document
that helps a person to thinkabout what they would like to
have happen for their care astheir illness progresses, and
(03:54):
not something that we want tosit it's a confronting thing to
sit down and do, right?
I do, I have had, have developeda respect for the process more
than the outcome. I think thatactually being together and
being able to have theconfronting conversations, but
also to share this is what Ireally wish for, which might be
(04:17):
a surprise sometimes, right?
Yeah, and, and to go throughthat process and almost journey
together. A little lady I metrecently in a care home was
telling me that she didn't wantto sit down and do that. Why did
you give me that book? But thenshe said she's been getting up
each morning, just in the quietbefore the care home gets busy.
(04:38):
She has a cup of tea, and shehas a little bit more of a look
and a little bit more of athink. And then when her
daughter comes to visit in theweekend, she shares, you know,
where she's got toSo, yeah, there is a thing about
the process, yeah, and I mean,like, I mean,
it was confronting enough forme. And.
(05:00):
And, and, you know, I wasn't theone with the weird, terminal
illness, so can only imagine,you know what, what it was like
for Angela or anyone in thatkind of situation, because you,
you're kind of pre empting this,this future that you know
doesn't have a good outcome.
Yeah, you know, you know, youdon't know when that is, but
you're, you know, you're kind ofexpressing your your final
(05:21):
wishes. And I,I remember having a conversation
with Angela very, very early on.
And I think we just finishedwatching afterlife, the Ricky
Gervais series were amazing. Andin a lot of that story is his,
(05:44):
his wife, obviously has hascancer. But before she passes
away, she's made him videos, andshe's she's talking to him, and
you know about what, what shewants for him, and all of those
kinds of things. And so Angelaand I had watched that long
before her her diagnosis, butwhen it kind of came around, I
youhave to be careful how you bring
this up, you know, because youdon't want to be like, hey,
(06:07):
like, you're going to die soon.
Like, you know, let's talk aboutthis, yeah, so, you know. So I
kind of said to her, like, youknow, is there, is there
anything that you'd like to dofor the, you know, for the kids,
for me, you'll, you know, foranybody. And you know, we, we've
seen the videos that that RickyGervais, his wife, made,
(06:30):
and she said that that's that.
That's a great idea. I wouldlike to do that. And so
into that's cool. We'll, we'llleave that there. And you just
let me know, you know when,where you want to, kind of when
you want to do that. And then asit kind of progressed, and as I
could kind of see, you know thatactually things are changing.
(06:56):
And I and I said to her again, Isaid, Have you, have you had a
chance to think about what youwant to do and what you want to
what you want to say, especiallybecause the, you know, the
Taylor, our youngest, you know,was nine at the at the time, so
you know what, what do you wantto say? And, and I think, you
(07:18):
know, she did lots of things,you know, funeral planning and
things like that were, you know,like the, I would struggle to do
those things, but I thinkactually having to talk about,
you know, and make a video tosay goodbye, you know, which is
what she's doing, yeah, youknow, there she found, she found
that really, really hard. Andthen obviously the decline kind
(07:39):
of limited her and what she andshe wasn't able to do that,
but just yeah, just to beconfronted with that and be
like, I'm saying goodbye inthese, you know, and even with
the care plan, like I'm writingdown all the things that I need
to happen for, and in somecases, that I'm not even going
(08:00):
To be here for you know, andthat that's, yeah, that's,
that's full on, yeah, I canimagine, on one hand, it's
really confronting to think andaddress the inevitable, but on
the other hand, it could bringyou a sense of empowerment being
able to have that say, I mean,what's important to you what
(08:21):
matters, what you would andwouldn't like, maybe some peace
of mind for Angela's family aswell, in terms of you being able
to see what she's written andknow, yep, under and the right
thing, because Angela's writtenthat this is important to me,
and I think that's what thatlovely lady was saying in the
care home, that you Know, she'sable to put her voice into that
(08:42):
and, and, and have her say aboutwhat she wants to have happen.
There's also been othersituations where I've worked
with families that there's beenquite a difference of opinion.
And so the advanced care planor, and it doesn't mean it
doesn't need to be thatdocument, right? And, and you
had advanced care planningconversations with her your own
(09:03):
way, right? Yeah,because you felt it was
important to elicit from herwhat she wanted so that you
could support that. And I thinkit does help people. If there is
a difference of opinion ormisunderstandings, it's like,
Oh, yeah. Oh, that's what mumwants to have happy, yeah, yeah,
yeah. And so the big, the bigthing for us, well, the big
thing for Angela, actually, is,was when it and especially when
(09:26):
it came to, when it came to herfuneral, right? So
we were very lucky that a verygood friend of ours is a funeral
director, so we were able toapproach her and have some
conversations with her veryearly on and and this was all.
This was guided by Angela andher, and so she would have those
(09:49):
discussions. And when, whenpeople found out that she was
that she was having thosediscussions and she was planning
her funeral, some people werejust like, we.
What are you doing? Yeah, whyare you doing that you should
be, you should be living life.
You should be. And she'd be. AndI remember being part of one of
those conversations, and shesaid to the person, she said,
Hey, like, this is my life. Thisis my life now, like, and, and
(10:14):
what am I going to do? Not planany of this. And and leave
Aaron, who now has, you know,four kids, and has just lost his
wife. I'm gonna let it sort itout. Like, how, how was that
fear, right? And so, so that,that was her, that was her
driving goal. Did she want to doit? Maybe not right. Because,
(10:38):
again, like it's quiteconfronting, but the but the
outcome of that, and for me as afor me as a person, I was so
conscious of, of making surethat everything was right and
the way and everything was theway that she wanted it to be,
that like it was one of the bestthings that that she did for us,
(11:04):
and not only for her, becauseliterally, everything that
happened at her funeral was whatAngela wanted,
the music the you know, we oneof her favorite karaoke songs
was Adele. We sang Adele, youknow, the whole congregation, I
guess you call it, whatever youcall it, sang a Deb, awkwardly
at first, but then, you know,got into it. But that's what she
(11:27):
wanted. And,you know, and so that I
remember, you know, I thought Ihad it all, you know, like what
she was, you know, she chosewhat she was dressed in. Now,
I wouldn't have chosen that forher, but that's what she wanted.
And so, like, I was like, Oh,that's good, you know. Okay,
(11:50):
yeah, that's that. That's thatsorted. And I remember getting
to she was at the she was she'dpassed away, and she was at the
funeral home and and our funeraldirector said, well, Aaron,
what, what lipstick Do you want?
Do you what color lipstick Doyou want her to
wear? No idea, she didn't writethat. She didn't she didn't
write that down. And so that wasme going, what if I choose the
(12:12):
wrong one? What if? What am Igoing to do? You know, in this
state of, you know, it's a fewdays after she's she's passed
away, not wanting to get itwrong, not wanting to get it
wrong, you know, but, but shehad, like I said, the music, the
just, you know, the casket. Nowshe'd always said, I just want a
plain pine casket. I want all myfriends and family and all the
(12:35):
kids to, you know, paint theirhands and stamp their hands on
it and write a message. Sothat's what we did. And and
that meant that for kind ofthree, four days after she
passed away, our house was justfull of of people that just
wanted to come and be part ofthat, be part of it. So you had,
you know. So there was kind ofalmost this, this support during
(12:58):
this really awful time,you know, and so, so we got all
of those benefits, but that wasperhaps because that's what she
wanted to, you know, and shedidn't, she didn't want to see
the casket. So when we went to,you know, when we went to
to see where she was, was goingto to lie,
(13:21):
we went and looked at the it wascalled the cottage. And we went
there when, when she was stillhere, and she was like, Yeah,
this is nice, and I'm okay withthat. And then remember the the
funeral director saying to us,do you want to see the casket?
She was like, nope, yeah. Butthis is what I want. And and
after that, then we went to thewe went to the, the
(13:44):
chapel, let me call it. We wentthere. And I said to do you? Do
you want to come inside? Nope,you know. So she did have, she
did have boundaries of, youknow, like, No, I don't need to
see that, but this is where Iwant it. This is how I want it
to pan out. But I don't want to,but I don't want to see it. But
(14:04):
was it for you as Angela'shusband,
going through that once youpassed away, and having almost
like a road map, a road map thatshe put together for you, right?
Just all of this, there was justno once there was no stress,
because obviously, you still,you know, you still have to
(14:24):
execute her plan, and you stillwant it to be right. But I don't
have to think about it. Wasn't awhole lot of choices, because
she'd made to she'd she'd doneit. So, you know, I had, she
together, we had come up withall the playlists. So when you
know, and you know, we both lovemusic, so she had chosen songs
and when they were going tohappen and things like that,
(14:49):
you know, there was a there wasthere was photo slide shows, and
she'd been a part of that,you know, she, she had had,
you know.
The eulogy had had been read toher so she knew what was going
to be said. I read my speech toher. I had a quiet before
everyone got up in the morning,and I
(15:11):
went and sat with her, and Isaid, Do you want do you want to
hear what I'm going to say? Andit's one of the hardest things,
yeah, ever to do, but, but Iwanted her, I wanted her to
know, to know, yeah,and, you know,
down the track, I've kind ofthought about it now, and I
(15:35):
always think, like,why don't we do it when they're
here? Do you know what I mean,like this, this celebration that
they that they can be a part of,like, I think you know, and get
to hear this, the the amazingtributes that people, they
didn't, people know. How wouldthey are to say, Yeah, and we do
it after they're gone, yeah? Butno, it was a it was a massive
(15:57):
relief. And I think ultimately,she did that, you know, said,
like, it's confronting, youknow, and that's where she had
her limits. No, I don't want tosee the casket that I'm going to
be in, but this is, you know,this is, I'm taking you this
far. I'm taking you this far,but I'm but ultimately, I think
she was, she was doing it forme, you know, because she knew
(16:20):
thatthere was already enough going
on. I don't you know if I canplan this and also have it the
way I want it to be. Then,that's then, that's what I'll
do. Yeah,I'm thinking as well around it
sounds like you and Angela wereable to have these open
conversations and talk asdifficult and confronting as
(16:44):
they were. You had theopportunity to do that. Trish, I
imagine there are lots ofscenarios where maybe it's not
as open a conversation, or thereare differing opinions. Yeah.
How do you manage that whenyou're going in to support
whanau? I mean, that's anexcellent question, particularly
for those people who may nothave someone to represent them,
(17:10):
but but also, like Aaron, youmentioned you have a blended
family. You and Angela, somepeople have blended families
where there is a lot ofdifference of opinion,
and so being able to notnecessarily get things down in a
document, but at leastfacilitate conversations where
you can represent the voice ofthe person doesn't always go
(17:32):
according to plan.
But you know, another situationEsther that you know it needs to
be talked about, really, is ifsomebody hasn't got capacity for
their own decision making, youknow, and towards the end of
somebody's life from illness,they usually will lose that
ability. And so it is. It'sdesirable to have someone that
(17:52):
you trust to represent yourwishes and to speak for you
really. And often, people willdo that as an EPA, enduring
power of attorney,and it would be with that person
that you would share youradvanced care plan if you'd
completed it, or at least whatyou've written on the back of
the survey. What it is that youwant, the conversations the back
of the survey, yeah, this iswhat I want. This is what's
(18:14):
important. Yeah. And we, youknow, we were before this all
happened, we were those peoplethat were like, oh yeah, we kind
of have an idea of what's goingto happen, you know. Like, you
know, what will happen with thekids will, you know? Like,
they're probably going to be,you know, they're probably going
to be adult. And what does itreally matter? And then when she
got, when she got diagnosed, itwas like, Oh no, actually, what
(18:38):
are we? Can we? What are wegoing to do? And so we kind of
had the bones of of a will and,and so these were all of the,
you know, I said the adminthings that now we had to go and
get wills, and we had to go andwe had to go and get
letters signed that said, Angelais of sound mind to make these
(19:01):
decisions. And while we didn'tknow it at the time, the clock
was ticking, right? Because itwas only going to be a few more
weeks from when that was done,that actually she wasn't going
to be able to do that. You know,not that she wasn't. It was
sound mind, but she she wasn'table to communicate or in
medications and people'sthinking and frailty and fatigue
(19:23):
and and all sorts of things, youknow.
And the the added complicationfor Angela was the time frame,
yeah, and how things progressedfor her, yeah. And it makes me
think around, you know, I, Ipersonally should be making
these plans, or at leastthinking about the and setting
(19:43):
up a power of attorney now sothat, if God forbid that
happens, we've got things setup. Yeah, that did Angela have a
power of attorney? Yep, yep. Soall of that was set up. So I
was, I was power of attorney,and I.
You know, and thankfully, likeit all just went, you know,
according to plan, andeverything is kind of carrying
(20:06):
on as, you know, as it shouldbe. We're quite lucky. We didn't
have those, you know, that doesthe bumps and the disagreements,
and, you know, this is mine, andthat's yours, and all of those
kinds of things. So we don't,you know, make it. We kind of
don't have that. And I thinkthat's probably due to the age
we are and, you know,but, but, yeah, so, so we had to
go through all of that. We'revery lucky that, that we have a
(20:30):
family member that is, that is alawyer, so we were able to kind
of get that stuff done quite,quite quickly, because that's a
really complex minefield forpeople, and it's pretty anxiety
invoking, well also because,because we have a family member
who is our who is our lawyer,they were able to say, hey, you
need to do this. And you need todo this otherwise, if that was
(20:53):
just me and Angela by ourselves,without that, you know, inside
knowledge, I guess those thingswouldn't have happened, who just
wouldn't have known and andagain, they're kind of things
that get because Angela'sillness is, yeah, is the core
focus. Those things would havejust gone, forgotten about. So
we were, we were really luckythat there was, we had someone
(21:15):
that was able to go, hey guys,we need to do this. You know the
sound of the document to saythat she's of sound mind,
I would never have thought ofthat, you know. And so actually,
no, we need to do this, and weneed to do this. And, you know,
so we were really, really luckythere. Obviously, not everyone
is, is that lucky? But theother side of it is people, you
(21:35):
just don't, you don't know whatyou don't know, no, and it is,
you know, when you sort of mapout that kind of legal, medical,
financial journey, adminrequirements, I think you talked
about, you know, in the firstinstance, Aaron, there's a lot.
There is a lot to navigate andand people don't know because
they're not, you know, theydon't need to know when they
(21:59):
don't need to know exactly. Andwe had, you know, we had some, I
don't know if they'recomplexities, but Angela, very
early on, wanted to donate. Shewanted to donate her brain, as
you know, she wanted todonate organs and things like
that.
She didn't get to, because it'sstill quite a complex process,
(22:23):
but we had to manage that aswell and get our heads around,
okay, well, how does thathappen? Who, you know, who do
you contact, and and all ofthose kinds of things. So, yeah,
it just becomes like a anadministrative minefield, and,
you know, you're trying torespect this person's wish is,
and, and do the best that youcan for them. Well, you know,
(22:46):
these two big trains are kind ofrumbling on. There's the admin
side and, and we've talkedbefore about the
normal life carrying on as well.
So you're going left blows inthere. And, yeah, it's, it's
very formative. Comes that wholeanother facet of this really
complicated care, medical familylight and how you're adjusting
is you keep moving along thetrains, right? Yeah, with that
(23:09):
continual change. Aaron, we'vewhen we talked with Charlie, we
talked about that kind of care,planning and finding out in
Charlie's first few visits, whatwas important to Angela, what
was important to you, and howcan you know we make sure that
we help with that, but also foryou to know what's important to
Angela, and I think that relatesquite closely to the advanced
(23:32):
care plan. All those discussionsaround you know, what does
Angela want if something changesto her medically, and does she
want to go to hospital? Does shewant to remain at home and move
to comfort? Cares? Did you havethose conversations with Angela
and how did they go? So I thinkwhen it came to, when it came to
(23:53):
practical, the practical side ofthings, Angela was very, was
very open. And, you know, andyou know, talking about her
funeral and things like that,she was very open about persons,
the emotion sides, and talkingabout the kids and things, yeah,
that she found quite hard.
But in terms of practical stuff,let's talk about that, because
(24:15):
that needs to, you know, thatneeds to be talked about. And
so,you know, her big thing was, is
I want, I want to be lookedafter at home. Yeah, I don't. I
don't want to go to hospitaland,
you know, and from my point ofview, that was, that was, that
was just never an option, youknow.
(24:37):
And I never thought of analternative. Do you know what I
mean? Like, it was like, well,she'll just, she'll just be
here, you know? And I think, youknow, when we, we talked with
Charlie and, and I said, like, Ijust, you kind of, kind of shift
from husband mode to carer mode.
And, and this is what I did.
(24:58):
There was no like, Okay, well,what?
Happens later on, when, youknow, if she gets really, really
bad, like, and you can't lookafter her, that just wasn't even
a, just wasn't even a thought.
It was like, she wants to stayat home, that that's what's
going to happen. And I'll doeverything that I can to make
sure that, then, you know, tomake sure that that happens. But
yeah, we were pretty, you know,she was pretty, like I said,
(25:19):
when it comes to practicalconversations about what do I
want and how do I want things tohappen, you know, there was,
there was no issues, you know.
And she was more than happy tomore than happy is probably not
the right term, but you know,she was comfortable having those
conversations, which, you know,for me, like I can, like, just
(25:39):
can't thank her enough for, youknow, for that, because it, you
know, I'm a kind of logistics,kind of brain type person where
I just, I need, we've got aplan, and we've got these steps,
and we're going to go throughthem all. And, you know who,
recognizing that and being ableto go, this is what, this is
what I want you to do, and thisis what we can this is what I
(25:59):
need you to do for me was, youknow, was massive, and people
often do talk about that. It'slike, you know, thank you, Mum,
you left us a plan. Thank you,you know, whoever, yeah, for,
for letting us know what youwant, giving us a plan. It's
good. We use that term roadmapbefore, you know, steering you
through. I think it's, you know,the comment that you made about
(26:21):
much more difficult to havedone, perhaps the legacy stuff
for the kids, for the future.
And you know, that's wonderfulthat you had that conversation
about that. Yeah, yeah, yeah,yeah. In the in the end, we
didn't, we didn't get videos,but we Cherie
was actually meant to sit downwith her. Unfortunately, when
(26:43):
they were about to do it, Shereegot covered and had to go home.
So a friend of mine sat withAngela for a good couple of
hours, and and and wrote cards,notes for the for the children.
Angela obviously couldn't writeand and my friend had to kind of
decipher what she was trying tocommunicate. But we, you know,
(27:05):
but we do have, we have cards.
So the so I have a card,my boys, Angela's stepsons, they
each have a card. And the girlshave and they they had a next
birthday card. They've got a21st card. They've got a first
baby card, they've got amarriage a first wedding card,
and things like that. Andthey're thankfully to Charlie,
they're locked away in afireproof box because I told
(27:28):
Charlie about these cards, andshe said, where are they? And I
said, I've just got them at homein a plastic bag. She said, What
if the house catches fine. I waslike, Well, great. Chad, yeah, I
hadn't thought about that.
So I went straight away andbought this fireproof box, and
so now they sit in there, butnurses think of everything,
(27:49):
yeah, really, um, you know, theylook, I like to say that problem
focus, because they look forwhat could potentially go wrong,
and then put the solution. And,yeah, yeah, so, so, yeah, I am
very thankful that she, thetiming was a little off, but,
you know, but that's okay, but,yeah, but the girls and the boys
and myself now have, you know,we now have these, these cards
(28:10):
of, you know, that Angela has,has
written for us. So that was, youknow, so that, again, she's,
she's written these four eventsthat she's not here for, you
know, and she knows that she'snot going so to to write those
things must have just beenincredibly hard, yeah, but, but
(28:33):
all so there must have beensomething for her about this is
what I've got to give now forthe Future, and it will be a
lasting gift day, yeah, yeah,absolutely. But a sweet moment,
yeah, yeah, but a sweet moment.
And another facet, in the midstof all of this, I'm thinking,
Angela's in her 40s. You're bothworking professionals raising a
(28:54):
young family. All of a sudden,Angela can't work anymore? Yeah,
you're probably having to thinkabout, you know, pulling back
from work or giving up so thatyou can care from her. So how do
you manage suddenly going frompotentially two incomes to
(29:14):
whatever happened next? So Ithink, I think I've mentioned
previously, so obviously,we went to the hospital that
that day, where we very firstfound out that she had a mass in
her brain. That morning she wasgetting ready for work because
she never went to work againfrom that day on, you know. And
early on, there wereconversations of, oh, well, you
(29:36):
know, two weeks after, after thebiopsy. Well, you know, you
could probably go back parttime, and, you know, after two
weeks, and we'll see how you go.
But no, she, she never went backfrom, from from that day. I
didn't go back for three and ahalf months. And.
(30:00):
Yeah, I and I said this toCharlie when we spoke to her,
what, what my my work, basicallyjust said, may you you do what
you need to do, and we're herefor you,
and we'll just see you when wesee you, and, you know, like,
(30:23):
and to my to my boss and hisboss, that's, you know, it's
probably not that big a deal.
You know, it didn't take a lotof kind of thought. They just,
you know, they might have signeda piece of paper to say, yep,
that's okay, but,but to us, and I remember
getting the phone call from,from my boss's boss, to say,
Look, you will see you when wesee you. And and
(30:49):
I remembered just wanting to,and I said this to Charlie
again, like I just wanted totake the feeling that that was
and just give it to him, yeah,just be like, This is what, this
is what that means to us, yeah.
And yet what, and what thatmeant was that she didn't have
to go to hospital, she didn'thave to go somewhere else. We
didn't have to we didn't have toget kind of carers to look after
(31:10):
her and things like that,because it meant that I didn't
have to worry about money or orgoing to work, or any of those
things she could her and thekids could just be
my focus. And,you know, and I'll forever be be
thankful to, you know, to those,to those goals for that you
(31:32):
know, as it's a wonderful waythat employers and organizations
can contribute like you'vedescribed, that you wanted to
just make him know what thatfeeling was, how much it meant,
you know, that's such asignificant way that they can
provide support. Yeah, I'm notneeding to do very much. Yeah,
100% Yeah. And at the time,like, it's not like I I'd been
(31:53):
there for years, you know, Ithink I'd been there 18 months,
you know. So in the grand schemeof things, did they owe me that
not, not at all good on them,you know, but again, just like a
small gesture that actually hadjust this wide ranging impact,
yeah, that allowed us to spend,you know, in the grand scheme of
(32:15):
things, was a very small amountof time, but we, we got to spend
as much time possible with herbecause of, you know, because of
what they did. So, yeah, becausethat job insecurity, or the
financial insecurity, or thefinancial strain, because you've
had to give up work, or you'rebalancing, like you said, do I
work to pay the bills or spendmy time with my loved one. Well,
(32:40):
something we say often, hey,yeah, how? What's your role in
that truck? Well, I guess ourrole in that is to help people.
Well, first, I think if we talkabout that whole admin journey,
right, the planning journey ishow you save money by actually
getting your head around whatall of that is, as you're coming
down that train track towardsthat space. And, you know,
(33:04):
people, if people have notaccessed maybe Work and Income
support ever in their livesbefore, that's another arena to
navigate, yeah, and to factor inand, and, you know, just that $5
part charge on a prescriptionfor some whanau that can really
tip things over the edge. And sowe do see people who are needing
(33:26):
to maintain, you know, as activea work life as they can,
particularly if they've lostincome from the home. Yeah,
yeah. Continence products costpeople. All sorts of things cost
people. Yeah, yeah. And, I mean,in the money world, like, you
know, I remember, like, theinsurance situation, the life
(33:47):
insurance situation, and, youknow, we got the initial
diagnosis was, you know, 18months to two years where you
can't, you can't claim oninsurance until, I think it's
maybe six months, you know,okay. And so we were like, Okay,
well, that's no help, really,any help, but okay.
(34:12):
And then, you know. And thenthere's the key, we save the
stuff and, you know. And there'sall that admin side of it as
well that you might Okay. Well,now I've got to kind of chase
that up. And, yeah, there's justall these things again that you
just, you just don't thinkabout, and people ask questions,
like, you know, what's probate?
What's intestate? How come Icouldn't get them I need from
Deb out straight away. I didn'tknow I was going to have to
(34:36):
front load the cost of thefuneral before, you know, the
money would be released from hisaccountant. So Esther, how do we
navigate that? By trying toraise people's awareness about
that that, you know, these arethings that we're going to have
to think about. Yeah, yeah. Andsometimes that starts before
they enter hospice care. Hey,yeah. Because if you know, in
hospice, when somebody gets.
(35:00):
Admitted to service that willintroduce them to the advanced
care plan. We'll try and have aconversation about power of
attorney and yeah, and get thelay of the land and give advice
on that. And the social workers,you guys play such an incredible
role in advocating for andsupporting patients of whanau
through that journey through thesystem, yes, right? Yeah. It
(35:21):
sounds like Aaron, you guys hadsuch incredible supports around
you in your network. And sosometimes I think a social
worker will have really minimalbehind the scenes, and other
times, you know that they'retaking people to help advocate
you. Of them at work, income,well, you know, I mean, I
thought about one of your teamthe other day who really did,
actually, literally take someoneto work and income to help.
(35:43):
Because, you know, for thatperson, it was a frightening
system just getting theappointment sometimes, you know,
we're not this is not to bagWork and Income, yeah? But you
know, it's a system that, yetagain, people don't know about
that, that you have to find outabout while you're doing
everything else that you'redoing. Yeah? And we talk about
the planning for the future,planning ahead in Angela
situation, you've, you know, asa three months from admission to
(36:06):
hospice throughout. So I thinkyour current role, Trish also
talks to then what we do in thecommunity to support or provide
information to people beforethey get to us. Yeah. I mean,
it's the same common themes ofpeople unaware of, you know, the
things that need to happen andthe things that they need to
(36:28):
consider, and the same questionscome up. And so, you know, we do
a lot of public speaking to helpwith that, and not just perhaps
in the aged care sector, butjust in general, these are real,
growing interest where peopleare going. I think I do need to
know about these things. Andwhere do I get information from,
(36:49):
in a way that's easilyunderstandable. They've got the
advanced care plan and a herokaukaudi. So there's a Maori
version, recently a Samoanversion, and there is a Korean
version, so there's quite a lotof uptake. And like I said, it's
not necessary about filling outthat document, but it's just the
framework for a conversation.
Yeah, and, and, I think thething that kind of sticks with
(37:13):
me, one of the things thatsticks with me now, is we've
just been through all of thisand, and Angela has had these
conversations with with peoplein our family and friends and,
you know? And they're like,Yeah, you know what? I need to
get that sorted. And I need todo this. Some
of them still haven't done that.
It's like, you know? It's like,what it is, one of those things
(37:34):
where, whether it's, I don'twant to think about it, you
know? And until you're actuallyin that situation and you don't
have a choice, it's kind ofalmost like leaving your
assignment till the nightbefore, yeah, yeah, just
thinking guilty, really, youknow?
(37:56):
And my dad raised theconversation at dinner the other
night, actually, you know, hesaid, I just was, wanted to talk
to you about, I've revisited myenduring parent uni, and I
wanted to have a chat with youabout, and I thought, you know,
I'm like, Oh, Dad, are you okay?
Yeah, he's okay. He just, Iguess he's just knows he's
getting older, yeah? But it'snot just people who are older
who die. Is, where were you?
(38:18):
Yeah, I think we think as well,older people, potentially, have
had this their whole life toplan, which isn't always the
case. It can still catch you.
I guess I'm thinking with withyours and Angela situation, the
fact that she's in her 40s, andthere's not, probably been time
(38:43):
to plan, but there's childreninvolved, and there's there's
work involved in things that itreally that navigation, that
administration side of it.
There's so much that comes intothis that's,
we're not even touching, onAngela's medical side of things
(39:03):
and her symptoms and how you'regoing as her carer,
there's so much to plan and tothink about and consider.
I'd wonder how people can workthat out without having the
networks and friends and thingslike that. Yeah, look, I, you
know, like, if I look at, youknow, some of
(39:23):
the the older people that I knownow, I wonder if it's just, you
know, that you just, it's justnot something you talk about.
No, it's part of the problemhere, and you just don't talk
about it. And you you know, whywould I? Why would I plan my
funeral? Part of it is notknowing how to do it, and
especially, you know, in a worldthat's changed so rapidly, is
(39:46):
in, you know, not knowing how toaccess any of those things. You
can't just, you know, you can'twander down to the post office
to pay a bill anymore. It has tobe done online and all those
kinds of things. So,you know that, you know, does
that add some.
Complexity into it of well,okay, I do want to do those
things, and I know that I haveto do them, but I have no idea
(40:06):
how to do them, you know,because it's not something I've
had to think about and ofeverything I've got going on in
my life, whether it's dealingwith a end of a life limited
condition, or actually going towork every day and managing my
front time job and children,it's probably at the end of the
to do list, yes, the lowest ofthe priorities and sampling that
(40:28):
we put off, whether we want toaddress it or not. And I think
an interesting thing is theamount of times I do hear from
caregivers. And similarly, yousaid so, Aaron too, similarly,
that actually the sense ofalmost fulfillment or
achievement or pride and self orsomething, for thinking I did. I
did that, and I achieved that,for my family member, for my
(40:50):
loved one, the way that theywanted it done.
I, you know, a couple of people,I once spoken to a woman said, I
don't, I couldn't do it. I justdidn't think I could be able to
do it, yeah. And then, just likeI did it, yeah, yeah, yeah.
Well, you just,I'm making an assumption here,
but nine times out of 10 youdon't have a choice, yeah, it's,
you know, there's, there's thisfive day period between the time
(41:14):
that they pass away and the timethat, you know that the funeral
is, you got to organizeeverything, and, you know, and,
and we were, Angela washands on, right? You know,
whereas, I think, you know a lotof people, well, I'm just, I
don't, I don't want to talkabout it, yeah, I'm just gonna
(41:35):
leave it. And whatever happensafter I'm gone, you know, don't
you do this? Yeah? Well, yeah,that, that's the thing, right?
And, and, like I said, when, youknow, just even down to, to
dressing there, you know, like,it wouldn't have been what I
chose in, you know, but I'mthankful that she was like, This
is what I want to wear, and thisis, you know, these are the
(41:57):
songs I want to panel, and thosekinds of things to make it. And
I think what, and what it didwas it made it about her, and it
had, you know, like, you could,you knew that it was that it was
Angela's, it was Angela'sfuneral, yeah, and, and then,
you know, like, lots of peoplecame up to me afterwards, and
they were like, oh, and westarted singing. I could just, I
(42:18):
could just picture her up there,just looking down. Just be like,
you idiots. Look at you allsinging this song for me,
you know. And, yeah, she, youknow, she, she would, she would
have loved it, but that's, youknow, but that's also, in
essence, who she was. And I, andwe went to Angela, and I went to
(42:39):
a funeral a month or two aftershe'd been diagnosed. And it was
for it was, how did that feel?
Well, look, I said to her anumber of times. I said, Are
you, are you sure you want to goto this? Like, again, I
couldn't, you know, like, that'skind of, and at the time when,
(43:03):
when we, when we went, like, Idon't, you know, we didn't kind
of go as, like, a, well, let'sgo and see, you know, like a
scouting mission kind of thing,like information gathering,
yeah, it wasn't anything likethat that, yes, that kind of,
that kind of happened by, youknow, carry your fault, yeah,
yeah. But no, she was like, no,absolutely, I want to go and and
(43:24):
I think in in the thing thatcame out of it was when, when
we, when we left, she knew whatshe didn't want, you know? And
so she was like, Ithat that's not, that's not
where I want to go. And I thinkthat kick started, the whole
this is what I want, this is howI want this to go,
(43:46):
which, you know, it's kind of aweird scenario, but I think,
yeah, it was the kick start toget things kind of going. Yeah,
it's a really importantreflection on
the more we can talk about itand think about it, because
ultimately, death is inevitablefor all of us. We don't know
(44:09):
how, we don't know when, but itis something that that could
happen or that will happen. Andso to be able to have these
conversations and and actuallytalk with our loved ones and
maybe set a few things in placeto prepare ourselves and, most
importantly, prepare our lovedones to empower them to make
decisions that they know wewould want. Is really, really,
(44:33):
really important. And thinkingabout, you know, you know, early
on in our discussion, youmentioned about, you know, that
transparency with the children,yeah, yeah. And just how, how
pivotal Could you talk aboutthat? Yeah, and well, and, and
kind of following on from what,from what yesterday, just said,
like, if, ifsomething was to happen to me
today, I have a 21 year old, an18 year old, 17 year old, and.
(45:00):
A in a nearly 11 year old,am I? Am I leaving that up to
them toit? Would it? It'd be amazing. I
mean, it would certainly betalked about,
definitely, um, but again, akind of following on from, you
know, Angela didn't feel, youknow, didn't want me to be kind
of burdened with theresponsibility of planning
(45:21):
things. What? How could I dothat to them? And so, so I, I
already have one, I have a Ihave a funeral plan and and
the the form that I, that Ifilled in at the top of that
form, it says, This is to help,you know, relieve some distress
from my family for, you know,having to make decisions, you
(45:46):
know, again. And I think part ofthat is to kind of counter that
whole, what, what? Why did youdo that? Yeah, you know, and
we in terms of the kids, likethe the
the casket was, it was at home,you know, and it was, and it was
set up in the lounge,and, you know, and again, there
(46:07):
was all these people came toput, you know, to put their hand
print on, and, and, and Taylor,my, my 11 year old, was
conducting it, right, okay, evenone, you have to come over here,
and you have to get, You know,I'll paint your hand, and you
choose the color, and thingslike that. So, so they were, you
know, they, they were a part ofit in, in the other, the other
part was, initially, Angela hadsaid, why I don't, I don't want
(46:34):
to be at home, you know, when Ipass away, I want to go to the
cottage and things like that,has it got, as it got closer,
the kind of protective person inme was like, I don't, I don't. I
don't want her to go, you know,I want her to to be here. So I
said to her, you know, I said,My Love, would you know? Do you
(46:56):
think that it would be okay ifyou if you stayed here, and she
said, Yes. And so there was athree day, you know, three day
period, where, where she was,you know, where she was at home.
And so the kids could go andtalk to her, yeah, and go and
see her. And I think,I think because, because there
(47:18):
was no, because we never hidanything from them, yeah, you
know, because it was, they werethey were just, they were part
of the they were part of thejourney. You know that that and
the whole way they know, likeTaylor knew something's going
on, and potentially what wasgoing on in her head was so much
was quite different to what wasactually going on. So to be open
(47:43):
and honest, protect them still,but to bring them on that
journey, I think, probably isreally important. I love the way
you know, Angela wanted hercasket decorated people to lay
hands, and that gave space forTaylor, as she said, to
orchestrate that and be activein the way that was right, yeah,
(48:07):
yeah, so her Yeah, yeah,definitely, yeah. Thank you for
being so open with us, but alsotalking to us about how
the conversations that youAngela and the rest of the
family were able to have thatsound like although they were so
(48:28):
challenging and confronting andemotional,
they were all so very helpfuland and I imagine healing in
some phase as well. Yeah,absolutely. We'll end it there.
Yeah. Trish, thank you so muchfor joining us. Um, thanks for
sharing you know, well, thankyou for think of being here.
(48:48):
Yeah, it's a teacher. Um,to us all the best, too. Peachy.
Yeah. And in the next episode,we'll be joined by Cherie, who
is Angela's sister and played areally important role in
supporting Angela and Aaronthrough their journey, and I
can't wait to hear from her.
(49:09):
Thanks for joining us. You.
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