August 3, 2025 • 41 mins
In this episode Aron and Charlie, Angela's primary care nurse, take us through Angela’s admission to Hospice West Auckland - just weeks after her diagnosis. He shares what those first days were like: the assessments, the new faces, and the gentle but unfamiliar rhythm of Hospice care. Like many, Aron and Angela had their own ideas about what hospice meant—most of them heavy, and honestly, a little scary. But those preconceptions were quickly challenged in unexpected and comforting ways.
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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 story,walking the final path together,
a hospice West Auckland podcast.
(00:28):
Hello and welcome to Angela'sstory, walking the final path
together, a podcast by hospiceWest Auckland. This is episode
two, and last episode, welearned about Angela and Aaron
and Angela's love story, and wego all the way up until her
introduction to hospice WestAuckland.
Today, we are joined by Charlie,who was Angela's primary nurse
(00:52):
through Angela's admission.
Welcome Charlie. Thanks forjoining Astor. Thank you for
having me.
Aaron. Last episode we talkedabout the lead up to hospice, I
think you and Angela werestarting to get the word of
hospice, the suggestions ofhospice brought to you, and then
(01:13):
we had a referral that camethrough. So obviously Angela's
diagnosis came along, so you'rekind of dealing with all of
that. And thenour top my head, our surgical
nurse from the DHB mentionedthat we should probably get in
touch with hospice. Now,obviously, there's kind of some
preconceptions around what that,what that means, and things like
(01:35):
that. So that was my initialreaction. Was like, what are you
what are you talking about?
We've, you know, we've had aprognosis of 18 months to, kind
of three years. Why are wegetting hospice involved? And
that was more aroundmy my perception of hospice at
the time was that you, you cameto a you went to hospice, and
(01:58):
that was kind of the last days,and you kind of, you went in and
you kind of didn't come out,and you stayed there all the
time, and people looked afteryou. And so my initial thoughts
around that were like, Whoa.
Like, hang on a minute. We we'vejust found out that this is a
(02:20):
thing. What? Why are we kind ofshipping her off to hospice? So
that took, that took a littlebit to kind of get used to, and
get my head around. Youknow, you, like I said, you're
kind of dealing with thisinitial prognosis, and now it's
like worst case scenario, andit's like, Well, what happened
to all the in between bits? So,yeah, that was, yeah, it was, it
(02:41):
was, it was quite full on. Andit wasn't until,
you know, we kind of got a briefexplanation. It was like, well,
actually, that's kind of not it.
You know, there's other thingsthat they can help you with. And
then seeing, that's when we gotto, when we got to meet Charlie.
So here, Charlie, what is therole of a nurse with hospice?
(03:07):
Well, I guess, because we are acommunity based hospice, our
work is within people's homes orwherever they call home,
and I suppose at that initialmeeting, it is getting an idea
of what's happened up to thatpoint, what disease has occurred
to cause them to need to beunder hospice, and getting to
(03:30):
know that person, their family,their sort of support network,
what the main issues are. And Iguess, sort of starting some
conversations about wishes forthe future. Our role is to
really help support people tomanage their symptoms and to be
cared for where they want to becared for during that time of
(03:50):
deterioration, and I guess inthose last sort of days, hours
of life as well. And that was,and that was a that was the
biggest thing for us, is, waswas keeping Angela at home for
as for as long as possible, andso thinking that preconception
that she was going to kind of betaken away to then have that
(04:10):
kind of like, no, no, no, no,no. Like, we're going to do what
we can to keep her at home andmake sure that you know that
she's okay. Was like this, like,oh, okay, all right, now we can
kind of open ourselves up to,you know, what you guys actually
do? So hearing that we'recommunity based already starts
(04:31):
to break that preconception thatI think a lot of people have in
the Hospice is a place that yougo, and although there are
inpatient units that people cango to if they need to,
like you said, Charlie, thepredominant support that we
provide is where people want tobe. And I
(04:52):
think we're quite unique in WestAuckland in that and we have a
fabulous community team tosupport people, because we.
Know that generally, people wantto be cared for in their last
days in the place they callhome, whether that is their own
house or a rest home or a hostelor wherever that may be. And I
(05:13):
think probably thosemisconceptions are based on
older values of hospice, perhapswhether that was the case when
hospice only got involved inthose last phases, but very much
now, it is about living everymoment and trying to enhance
someone's quality of life asmuch as possible. Yeah, yeah.
(05:34):
And I mean, Iwhen I talked to a friend of
mine leading up to today, she'dalso she had an experience where
she was standing in line at thebank, and
a girl behind her was wastalking to a friend and was
saying, Oh, my dad's reallysick.
And, you know, we're not surehow long he's got left, and my
(05:55):
mum's really struggling to lookafter him, and stuff like that.
But we don't want to callhospice, because they'll come
and take him away and and thingslike that. And so my my friend,
having seen what what happenedwith Angela, was kind of like,
hey, look, I'm really sorry tokind of eavesdrop, but I just
kind of need to jump in here.
That's not what they do. And soshe kind of explained, you know,
(06:19):
our experience to this girl, andthis girl, like, hugged her and
was crying, was like, Oh my God,thank you so much for you know,
we didn't know, and now we canget this help. So, yeah, it is,
it is a pretty strongpreconceived idea about what
happens. And are these one ofthose things, unless you need to
know, you don't seek theinformation. So you just hear
(06:39):
what you've heard from otherpeople. You're not going to give
yourself that education aboutwhat the service offers if you
don't need to know so it and asmuch as we really plow into
trying to get that message outthere, I think people don't
listen unless they need to.
Yeah, yeah, because we don'tlike to talk about death and die
(07:01):
as well. No, yeah, which is partof which is a big reason of why
we're here today doing this, andwhen we first started this
podcast, it's one of the reasonsright is going, Yeah, you you
don't know what you don't know,but actually you know kind of
all need to know. Yeah. So yourfirst couple of visits,
(07:22):
Introduction to hospice. Whatwas that like for you and for
you and Angela,after the, you know, the kind of
initial, kind of like, okay,yeah, this is a, this is a road
we're going to go down.
It was, was reassuring, youknow, it was in especially kind
(07:43):
of getting that kind of feelingthat actually, we we could do
this, and, no, we weren't goingto be by ourselves. And, you
know, there's that initialperiod where it's like, you
know, we're going to pop by,kind of once a month kind of
situation. And,you know, okay, oh, that's, you
know, that's, that's cool, and,you know, and that progression
of, okay, well, now it's once aweek, and then, and in our case,
(08:05):
that was really, really quick,you know, it was kind of, it'll
be once a month, and then it wasa week later. No, no, we're
going to be here every week,kind of thing to every day. So
the big thing was, it was, itwas reassuring. I think it was,
it was comforting for for us,but I think even more so, it was
(08:29):
comforting for Angela. I thinkit took kind of a lot of fear
away from her, thinking, Well,where am I, you know, where am I
going to end up? You know, am I?
Am I going to be taken away frommy family and in things like
that? And so I think that was athat was a really, really big
part of it. Andyou know, when you you might not
(08:49):
have noticed, but when, when youcame into the house, you could
see her kind of just go,like, I don't have to have these
amateurs kind of looking afterme, the professionals here, you
know, goodness, yeah, thankgoodness. Like, because as, as
good a job as these guys aredoing, you know, tell it, yeah.
(09:10):
And so, like, and it was aphysical thing, you know. And
she, you know, she was in thehospital bed or, or, you know,
like, she, you could just seeher whole body relax, like, Oh,
good. Someone's gonna reassureme, or someone's gonna tell me
what's, you know, what's goingon. And also, you know,
someone's gonna reassure themthat you know, that everything's
(09:32):
okay.
So, yeah, that was, yeah, Ithink that was, that was a
really, really big thing fromus. Yeah, I'm curious what it's
like for you, Charlie, whenyou're first meeting or going
into the home of the patientsand meeting the whanau, we get
(09:53):
such different we're WestAuckland, so we get so many
different people, which is whywe love.
Of it, but also people at verydifferent stages, some people
that are quite early in theirjourney, and others that maybe,
like Angela's case, had such aquick progression of things.
What's on your mind when you goin? What some what do you do?
(10:15):
Yeah, I guess with Angela aswell, the like you said, the
referral was, you know, straightafter biopsy results and
diagnosis. And the thought wasthat we had quite a bit of time
ahead of us. So already, whenyou get a referral and you look
through that clinicalinformation, you're making a
picture of, okay, this is whatI'm expecting to see. These are
(10:36):
probably the symptoms. This ishow it's probably going to go
based on previous experience.
Have a look through mention offamily and that kind of thing.
But really, just have to go inwith such an open mind, because
you don't know what people'smisconception or pre conception
of hospices. You don't reallyknow where they're at in their
acceptance of a disease, whatother sort of factors are going
(11:00):
on and to influence that withintheir home, within their sort of
social environment.
So it can be a bit uncertain, Iguess, because you don't really
know what you're walking into.
And I think for me, at thoseinitial assessments, it really
is just gathering informationfrom I always go in, not
assuming that people know what'swritten on my referral. Because
(11:24):
sometimes they've been toldthings but they don't remember
it. And I don't want to be goingin and saying, so you've got
this and this, and they're like,Mort so I always go in assume
that we know nothing, and asksomeone to tell me, okay, what
has happened up until thispoint, tell me what's led to me
being here, and then I can getan idea of how they're thinking
(11:45):
about things, and then justlearning what's important to
them, What then is, what theirlife is, and then an opportunity
to really explain our servicesand maybe just get rid of some
of those misconceptions, Iguess, yeah, yeah. And I
remember a nurse saying to meone time that the first thing
that they do when they go on issay what's important to you
(12:07):
right now. And to me, thatspeaks to the whole it's about
the person the and we're here onyour terms,
which, again, I wonder isanother preconception that
people think we're going to comein and take,
yeah, and I think, andespecially in that beginning
(12:28):
part where, and a lot of, a lotof our journey was we don't, we
didn't know what we what wedidn't know, right? And so, and,
and we also, we don't know howserious it is, like, obviously,
you know the whole picture, yes,it's, yes, it's very serious.
But,you know, we don't know what,
what help she needs, you know,and,
(12:49):
and I remember, you know, likethe, you know, there was all the
equipment that we needed, youknow, the shower, the shower
stuff, the, you know, the, Ican't remember what it's called,
The sliding shirt, the horn tothe sliding sheet, or the hoist.
That was an experience,the thing with wheels that goes
over the toilet I can, oh, thankyou, yeah, you know, so stuff
(13:11):
like that. And we didn't havethat stuff, you know, we didn't
know that we needed that stuffor that it was available, and it
was, it was quite It wasamazing. Like, it was kind of
like, okay, guys, this is whatwe're going to do. Bang, bang,
bang, bang, bang, bang. And thestuff was there, like, you know,
within, within days, you know,and it was like, Oh, okay. Like,
(13:33):
great. Like, we can kind ofstart kind of getting used to
what this is, and, and all of asudden she's got a little bit
more freedom, I guess. And, youknow, and her safety and things
like that are all kind of partof that. And so that was, yeah,
so that was really, really cool,like, it just how quickly things
(13:55):
happened, you know, it wasn't acase of, well, yeah, we might
need this. And we, you know,yep, we'll sort that out. And
two weeks later, there was, youknow, it wasn't like that. It
was just like, here's the thingsyou need, here's the things that
we've sorted for you, andthey'll be here in a few days.
And if it doesn't work, that'sokay, we'll come and take it
away and and it was, yeah, itwas really, really good. So a
(14:18):
lot of especially with Angela'ssituation and how quickly it was
changing. How did you managenavigating that, Charlie?
Because Angela wouldn't havebeen the only person that you
were supporting and caring forat the time. What what is the
life of a nurse look like interms of your caseload and your
work? It's very busy. Esther,I mean, I hardly see you in the
(14:39):
office, so I'm assuming it'sbusy. I guess you have to
prioritize Angela, to be honest,that from the day I met her, was
a priority because I knew howunwell she was, and I could see
her deteriorating quickly. Andwe have a range of patients on
our service, some who are very.
(15:00):
Be on there, like Angela, somewho come onto our books even in
the last days, and then some whoare very stable, and we just
sort of support them in thebackground.
So prioritization is one, andtrying to kind of keep ahead of
things. So my feeling isvisiting more frequently, so you
can notice those changes insomeone. Because I think when
(15:21):
you're with someone all thetime, you perhaps don't notice
those little deteriorations. Andthen when we go in, we might
think, oh, that doesn't look asshe doesn't look as strong as
she did last week, which doesn'tseem to be moving so well.
And I guess we have a widerteam. It's not just me, it's not
just the nurses. We have oursocial care team. We have our
(15:41):
healthcare assistants who canhelp, you know, do some of the
practical things at home. Soit's not just on one person.
And I think, always empoweringpeople when they're at home to
say, Look, don't assume. Don'twait for us to call you. Tell us
if things are changing, like wethink, no news is good news, but
we are there 24/7 we've got thatamazing support after hours on
(16:05):
the phone with really goodspecialist nurses who can advise
you. So yeah, I think it'smaking sure the team used as a
whole Yeah, and that's in, andthat's a big part of it is, is,
yes, yes, she's changing, but,but I'm there every day, and so
I don't, you know, I, I justdidn't see it, you know, you
(16:30):
know, kind of be a week laterthat you'd be like, Oh, that
that doesn't seem right.
And, you know, having, havingyou come in and, and having
those, those kind of frankdiscussions, right? Like, hey,
actually, yeah, we've gone fromthis and we're kind of
progressing quite quickly.
(16:51):
You know, I, and not everyonemight appreciate that, but I
really appreciate it. Just, youknow, because of who I am, I
would rather just be told, Hey,this is, this is the case. I
assume that not everybody is.
Yeah, you've got to gage it ayou know, there's the sometimes
those conversations have to beon the hope I wasn't too sort of
honest, and sometimes you've gotto just take it step by step and
(17:13):
just sort of introduce the factthat things don't seem as good
as they were before. And itreally, and I think that's the
the importance of as nurses, wehave a caseload of people, and
so you do get to know thatperson and that family, and you
know how to pitch that thoseconversations, yeah? Because
there's different some peoplewant to know everything and want
(17:35):
to be kept up to date, andothers maybe would rather not
know and just roll with thechanges, right? Yeah, we're
going to explore a little bitmore in a future episode around
Angela's changing condition, andparticularly when she's starting
to deteriorate to the pointwhere we're entering her last
days of life, and things reallyramp up there. I'm curious to
(17:57):
know,in hospice world, we talk a lot
about goals of care and careplanning, and so I imagine the
initial assessment and thosefirst few visits are where we're
starting to really get a picturefor our patients and our whanau
around what's important, whatare the goals? So the the
(18:22):
main thing for Angela was, wasus not seeing her suffer. So
Angela's mum passed away andfrom stomach cancer, and that
happened, she was diagnosed, andthen two weeks later, she was
she was gone, so, and it wasfrom, from I wasn't there. But
from what I understand, it wasquite traumatic and stuff. So,
(18:42):
so from the from the verybeginning, from the time she was
diagnosed, Angela was like,right? This is, this is my life
now, and and I can't do anythingto change it, and I just have to
be as pragmatic as as possible.
So, so that was a really bigthing. And I think
(19:03):
being at home,which was not only where she
felt comfortable, it was also,you know, and we went to know
this at the time, but we hadsuch little time left, right,
and so, so being at home wasreally important to her, because
she felt safe,you know, her, her dignity and
stuff was really important toher.
(19:30):
And so, yeah, so those were thereally, really big things.
Her big thing was making surethat we were okay, you know, and
that we were we were managingthis, you very rarely, you know,
did she get upset?
And, you know, it was more, youknow, making sure that that that
(19:51):
we were okay.
How? How common is that Charliefor the concern of the patient?
To actually be making sure myfamily's okay. I think it's
hugely common, and I think it'snormal as a mother, especially,
to worry about the impact ofthat situation on their family.
(20:16):
And I've Yeah, I think that'svery common, and I think that's
part of someone's journey, Iguess, is to
working through that. So that'snot sort of affecting them as
they're deteriorating as well.
Yeah, and I think it's, it's avery hard thing to to talk
about, because it is going toaffect people, watching the
(20:37):
person they love deteriorate andchange and enter into that final
phase. There's no two ways aboutit. It is rubbish and and, yeah,
you can't always change them.
And there's the dignity side aswell. When you're starting to
care for them, you know you andbecame her caregiver as well as
(21:01):
her husband. So there'sbalancing that relationship as
well, yeah. And I think, Ithink, like, I say, Look, when,
when you would come over, therewas that relief, right? And I
think,I think that was also part of it
for her, was she was so worriedabout me, and, you know, in the
kids and stuff like that. And soremember when we, when the when
(21:24):
we organize the carers to comein, yeah,
I know, knowing Angela, as I do,like, you know, to have someone
come in and and shower her andand all of that kind of that was
a massive, massive deal for her,and, and she didn't do that for
her. She did that for she didthat for us, you know,
(21:51):
and, and that's what I mean,like when you would come in, I
think it was relief for her thatshe didn't have to have us look
after her, but also because sheknew that that it would give us
respite, you know, yeah, yeah. Ithink it would, if that relief
that you saw in her was reliefof all their getting some
(22:11):
support as well. And because Ithink when you do get into that
phase of needing external carerscoming in, it's quite a change
in your life, you know, itsignals something has changed
for Angela, but then it's alsosomething very, very different
to have someone come into yourhouse to do those personal
cares, and it didn't work outoverly well for you guys, and I
(22:37):
think that was probably a goodtest. And actually, you guys
found out that actually it wasbetter to do it yourselves,
yeah, and, but yeah, I think sheknowing Angela, as I did, it
would have been that relief of,oh, okay, so that's one less
thing found to worry about andto physically do as well. Yeah,
yeah. It speaks to the fact thateverybody is impacted by, you
(22:59):
know, Angela had the diagnosisand was the one going through it
herself, but there's that wholefamily around her also
experiencing it and also goingthrough it, and life happens as
well. We talk hospice is qualityof life, living every moment so
trying to balance that you know,knowing you've got this finite
(23:22):
time left with your loved one,and balancing that and spending
that quality of time with her,doing the things she wants to
do, while also adjusting tothese changes of of her needs.
Did you had a trip planned? Iheard, yeah, so
(23:45):
as soon as, as soon as she'd hadher had her biopsy and stuff
like that, her Angela's cousinsset up a
give a little page, that's whatit's called. And,
you know, we were kind ofagainst the idea at first, and
they were like, look, there'sloads of people here that want
(24:07):
to help. They don't know how tohelp. Some of them can't help in
any other way, so you have tolet us do this. We're like,
Okay, that's cool. And like,was, it was overwhelming. It
was, you know, the generositywas really overwhelming. And,
you know, as soon as she wasdiagnosed, she was like, right,
we're making memories. We've gotto, you know, we've got to do
(24:29):
something. Andwe were at the mall, and she's
like, we're going on a cruise.
Like, what do you mean? We'regoing on a cruise? She's like,
they give a little money. Wewe're going on a cruise, right?
Okay? Like, Well, I'm obviouslynot going to stop you, because
(24:49):
no one's going to stop you. Andwe march into an unnamed travel
agent and and she sits down andshe and she tells the person,
the.
Story. This is, I've beendiagnosed with this. I'm taking
my family on a cruise. And thetrail edge was just kind of
like, okay, like, here we go.
You're very matter, yeah, yeah,yeah. And, and she was like,
(25:11):
right? I've never been to theSouth Island, so the I don't
care where the cruise goes, aslong as it goes through the
South Island. So okay, well,here we go. Here we go, this
cruise. Would you like toupgrade? Yep, that's fine. We'll
upgrade. So I think it got tolike,
like, $20,000 right? This, thiscruise. And I'm like, I'm
(25:33):
staying behind her, looking atthe prices in this book. And I'm
like,My Love, are you? She's like,
this is what we're doing. Like,okay, I just put the book down.
I'm like, whatever. And justthere was it in. The guy was
like, Okay, well,the cruise is in like, two
months. Like, so you have to paythe deposit tomorrow. Oh, no,
(25:54):
sorry. We have to pay for thewhole thing the next day. And
it's like, Okay, how much is it?
Was $20,000 Oh, my God, we canget $20,000 Rob
after the bank. Yeah, yeah. Andso paid deposit and ready to go
on this cruise andwatching YouTube videos of kids.
(26:15):
This is this cruise, like a 15day cruise, you know, it was, it
was nuts. She been on a cruise.
No for, no, no, no idea if shewas going to get seasick or or
anything, you know, and she but,but that was it. You just
weren't going to stop it. We'll,we'll sort it out. And she was
(26:37):
like, I'm getting my KiwiSavermoney. We'll just, we'll just
sorted out, all right, and so,yeah,
unfortunately, in all of thehaste of booking,
they forgot to mention that togo on a cruise, you'd need it's
mandatory to have travelinsurance, which someone with a
(26:57):
terminal illness is not going toget.
So there was a bit of arigmarole around that, and we
ended up not going on thecruise, unfortunately.
But then then she decided, well,if I can't go on the cruise, I
want to spaso within a week, we we had a we
had a spa pool, and,yeah, it was, it was just like,
(27:19):
you can't argue with her, yeah,but I think you know, if she
wasn't sick, but she was in thatmind frame, you were like, Okay,
look just to, we're just goingto do that, and that's fine. So,
yeah, so we, we ended up with aspa pool. She got in it, she got
in it. Yep, she got to, she gotto go on it twice.
(27:41):
Unfortunately, only twice,because we had the little, the
little incident with thetoenail, yeah. So I was
reminding myself of thatinstance
Aaron was, I think, helpingAngela in the bathroom, or the
shower, and He clipped hertoenail. Well, yeah. I mean,
there's putting a lot of blameon my shoulders there, but she
(28:01):
put a lot she did, she gettingher in the shower, and our
shower was not fit for purpose.
It was, yeah,and so I'm getting her into the
shower, and I'm by this stage,and you know, like that hasn't
been very long, but I'm havingto hold her up and get her into
the said supplied shower stilland,
(28:26):
and trying to wriggle her inand, and she goes to put her
foot down, and she clips her toeon my foot. And I think by that
stage, she was on chemo andstuff like that. So then they'll
just pay you off. Yeah. Andshe was like, Ow, that was it.
And I looked down and there'slike, there's blood everywhere
(28:47):
in the shower. I'm like, whathas happened? She thought my
toenails has come off. It wasjust so matter of fact, and so
obviously she can't go on thespa with a with a missing
toenail. But she told everybody,I bet she does, everyone to come
in and apart. Why is yourbandage on your toes wear and
rip my toenail like, okay,that's not how that happened.
(29:08):
Yes, it is okay. I can't go andinspire anymore.
Yeah, yeah. Soso she did. She, she did get to
to go on it twice, and yeah, andshe, she loved it. So was Angela
when she was first admitted tohospice West Auckland. Was she
(29:28):
still receiving treatment of anykind? Aaron, it was like three,
as it started, like three orfour days after our initial
introduction to hospice. So shewas going to, she was going to
the hospital every dayfor her radiation, and she was
doing, and she was doing chemo,oral chemo,
(29:52):
yeah, from from home, so I washaving to administer all of that
as well as thesteroids. And, yeah.
Yeah, anti inflammatories andall of that kind of stuff. Yeah?
And what was that treatmentabout? Charlie? Can you weigh in
on it? Yeah, I suppose it. Wetalk about cancer treatment with
(30:13):
a curative intent or with apalliative intent, and we knew
for Angela that we that diseaseshe had wasn't going to be
cured, but the purpose of thatwas to try and slow down that
growth and perhaps reduce theimpact that was having on her
day to day. And so I think whenyou're having palliative intent,
(30:35):
you've got to sort of weigh upthose pros and cons, haven't
you? And when people are in thatsort of treatment cycle and they
just feel like they've got tokeep going, but the side
effects, perhaps are just awful,and nothing sort of changing in
terms of symptoms. And thenpeople start to perhaps make a
decision about actually, is thepayoff going to be worth it? Is,
(30:56):
are the side effects of thisworth what it's going to give
me? AndI think that's very hard for
people, because with a curative,you know treatment, you know
that you've got to slog it out,but yeah, the end result is
going to be good, yeah, whereasit's very unknown with
palliative. And I think forAngela, that was really clear,
because the assumption was she'dhave this treatment and then you
(31:17):
that would buy her some quitegood long time. And that wasn't
the case at all, was it? And theundertaking of getting her into
hospital every day to Aucklandas well for radiotherapy, when
she was becoming more and more,you know, poor mobility is just
took its toll, didn't Yeah, and,I mean, it was, you're right, it
(31:41):
was, it was getting hard and,you know, and kind of, as it
kind of progressed, and she wasscheduled to have six weeks, and
this was to go over the kind ofChristmas, New Year period, so
it was all through summer andstuff like that. And, and we
were having to go in theeveryday, I think we got
Christmas and boxing day off,which was nice,
(32:03):
but as that kind of as as shekind of as the illness
progressed so quickly, it kindof was taking two of us to kind
of get there. TheI guess the positive side for me
is, you're right, like I knewthat there was not going to, you
know, there wasn't going to bea positive outcome, ultimately.
But you always had, you had hopethat, yeah, you know, it was, it
(32:25):
was gonna kick in and, you know,and they said, you know you're
gonna, you're gonna feel worsebefore you get better. And so
you kind of had that hope, okay,yes, she's, she's getting worse,
but that means that they'regetting better is just around
the corner. And then there's thethe emotional side of it too,
(32:46):
wherewe had so many people at our
house all the time wanting tohelp and support and just come
and see her and stuff like that.
So moments to ourselves were fewand far between, and those those
those trips to the hospital wereactually just time for me and
Angela to to just be byourselves. And, you know, and we
(33:10):
got it to a point we had alittle routine where, you know,
we'd go and get a hot chocolate,and then we and I didn't, I
didn't buy a hot chocolate onetime,
you knew. And it's, uh, not onlydid I know it, but when we went
to radio, when we went to radiotherapy, they were like, you
know, we took her in and she'sin a wheelchair. And they were
like, Angela, how are you today?
And you know, you spend, youknow, every day for these people
(33:32):
for an hour, and you know,amazing people, when they're
just like, Angela, how are you?
And she's like, Well, I'm notreally well actually. And
they're like, you know. And theyobviously start thinking, Well,
what's medically wrong with it?
Oh, what's that? He didn't buyno hot chocolate. He said that I
hadn't been a good girl.
Was like, well, actually, wejust didn't have time. Because,
(33:56):
you know? And like, oh, wow,Aaron, that's, that's really
terrible,if we show them the time.
Terrible, yeah, oh, 100 youknow, but, but it gave us those,
you know, the drive to and the,you know, and even just those
little moments when you, whenyou're when you're waiting, and
thankfully, they run it prettysmoothly. You don't have to wait
(34:18):
too long, but, you know, you'dbe in the waiting room, and that
was just time for us to sit. AndI would always sit behind her,
and I would, you know, just hugher while we were while we were
waiting. And we had our ownlittle, you know, wasn't ours,
but you know, we had our ownlittle area where we always went
to and we always and we alwayssat and so that, you know you're
(34:38):
going through this, thisterrible, terrible thing, and
but you're finding these littlemoments in the most random of
placesyou know that that we get to
have, that only, you know, onlyher and I get to have. And so,
yeah, and it was.
(35:00):
Yeah, it was really nice, sospecial to be able to find those
important moments and what couldhave been, and probably was a
really stressful event. What wasthe impact for you and Angela?
You've got this treatment that'shoping to prolong things and
improve things to a point, youknow, it's not gonna fix her,
(35:23):
but to then hear after threeweeks, it's it's not, what's the
impact on you? How do you copewith that? Well, I think that's
kind of where you came in,right? Because,
because it was you for me, like,I said before, like, I just want
to be told, right? Like, itdoesn't matter whether it's good
news or bad news, I just want toknow. And,
(35:46):
you know, I think that's kind oftakes a special kind of person
to actually be like,This is what's happening. But,
you know, and I get that noteverybody wants you know, not
everybody wants to know, but Iwanted to know. And so you and I
would have these discussions,you know, out of earshot of
Angela, and I would be like,just, just tell me, what's where
(36:06):
are we at? Because I, you know,I might not see it every day,
but I could see that, you know,it was like, you're waiting for
that moment. I was like, thismoment isn't happening, you
know. And so that's when I oncehe come to you and be like, just
tell me, you know, I I gottaknow what you know, what's going
on, yeah. And I think that's theimportance of knowing someone
(36:33):
earlier on, yeah. And because itmight have felt a little bit
early that we were involved soclose to her again in that
diagnosis, but actuallyI was then able, hopefully to
support you because we knew eachother, and maybe that sort of
supportive relationship was moremeaningful than me coming in as
the first time being like, Well,okay, this is what's happening.
(36:56):
Yeah, and you know, I could kindof gage knowing you as a person
by then, you know how to sort ofhave that conversation with you,
yeah. And I going back to sortof what you said about hope, and
Andrew, always wanting hope. Ithink that's so important. And
in my role, I never want tosquash hope and be like, Yeah,
this isn't going anywhere. Idon't know that. Yeah, and you
(37:20):
know, we're all trusting thatthe the intention of the
treatment was to have a goodoutcome, and so I suppose I'm my
role is, yep, that's the pathwe're on. But if that doesn't
help, and signs maybe indicatethat it's not, then this is
maybe what we need to preparefor. Yeah, you learn for the
worst and hope for the best.
(37:42):
Yeah. And I think hope is soimportant for people, for
patients, for families,and we don't want that the
presence of hospice to be thereason why people lose hope. We
actually want to help them gainsome more hope that they're
going to be supported in thatjourney.
Yeah. Yeah, and, yeah. And Idon't think, I don't think
(38:03):
Angela ever lost hope. I think,you know, when I look back now,
I think, I think she knew, and Ithink that's why she was able to
just be likethe, you know, this is it. And I
think, yeah. And I think thatpart of that, of
the I don't want them to see mesuffer, I think, you know, but
(38:26):
like, and then we're getting abit philosophical now, but part
of me is also like, because ofthat, I wonder
if that's why it happened soquickly. She hadn't given up
hope, but she didn't want todrag it out, you know. And so,
you know, they say that the youknow, that your brain and your
body is a powerful thing. Andyou know, if you want to fight
(38:48):
something, you can fightsomething, yeah. And I'm not
saying that she gave up, but Ithink part of her was like, I
don't want to put them throughthis, you know. And hence, you
know, the reason it potentiallydid that didn't go it, you know,
we had multiple prognosis wehad, you know.
And that's not how it, you know,and that's not how it played
out. And nobody thought thatthat's how it was gonna there's
(39:11):
gonna play out. Yeah, I alwaysremember that she didn't want
that final stage to beprotracted, you know, if this is
what was going to happen, then Ithink she just wanted it, wanted
it to be done, really, didn'tshe? She, you know, the
suffering, I think, for her, wasthe length as well of that
period of not being out of carefor herself, and not being able
(39:31):
to communicate and those kindsof things. Yeah, it's really
important for her. Yeah,absolutely. And with Angela, and
how quickly things happened forher that speaks to me about the
importance of taking those smallmoments that you had to treasure
with her. You know, waiting in awaiting hall, buying a hot
(39:52):
chocolate, or being absolutelyroasted or not buying new one.
You know, taking those smallmoments.
It's a treasure. Is soimportant, but also really hard
to do.
Yeah, I know it's like, it's Ialways, you know when I, when I
look back at it, you know whichI do pretty much every day, it's
(40:12):
like it was the, theworst thing that that could
happen to us, like, can I like,you don't you don't get much
worse, right?
But out of that were also someof the best moments that, you
know, that that we had,yeah, just yeah, get on light in
(40:33):
the darkness, you know, kind ofthing, you know. And those will
just live with me forever. Yeah,and I think that's probably a
good time for us to wrap up. Sothank you, Charlie for joining
us today. In the midst of all ofthis, there's four kids as well,
so we've talked a lot aboutyours and Angela's experiences.
(40:57):
Next episode, we are hoping tobring in our creative arts
therapist, Catherine, and we'regoing to talk about how you
navigated this with the kids.
It's a huge question, what do wetell them? How involved do we
get them in caring for Angela,but balancing? How do we make
(41:19):
sure that they're supported andprotected as well. 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 story,walking the final path together,
a hospice West Auckland podcast.
(00:28):
Hello and welcome to Angela'sstory, walking the final path
together, a podcast by hospiceWest Auckland. This is episode
two, and last episode, welearned about Angela and Aaron
and Angela's love story, and wego all the way up until her
introduction to hospice WestAuckland.
Today, we are joined by Charlie,who was Angela's primary nurse
(00:52):
through Angela's admission.
Welcome Charlie. Thanks forjoining Astor. Thank you for
having me.
Aaron. Last episode we talkedabout the lead up to hospice, I
think you and Angela werestarting to get the word of
hospice, the suggestions ofhospice brought to you, and then
(01:13):
we had a referral that camethrough. So obviously Angela's
diagnosis came along, so you'rekind of dealing with all of
that. And thenour top my head, our surgical
nurse from the DHB mentionedthat we should probably get in
touch with hospice. Now,obviously, there's kind of some
preconceptions around what that,what that means, and things like
(01:35):
that. So that was my initialreaction. Was like, what are you
what are you talking about?
We've, you know, we've had aprognosis of 18 months to, kind
of three years. Why are wegetting hospice involved? And
that was more aroundmy my perception of hospice at
the time was that you, you cameto a you went to hospice, and
(01:58):
that was kind of the last days,and you kind of, you went in and
you kind of didn't come out,and you stayed there all the
time, and people looked afteryou. And so my initial thoughts
around that were like, Whoa.
Like, hang on a minute. We we'vejust found out that this is a
(02:20):
thing. What? Why are we kind ofshipping her off to hospice? So
that took, that took a littlebit to kind of get used to, and
get my head around. Youknow, you, like I said, you're
kind of dealing with thisinitial prognosis, and now it's
like worst case scenario, andit's like, Well, what happened
to all the in between bits? So,yeah, that was, yeah, it was, it
(02:41):
was, it was quite full on. Andit wasn't until,
you know, we kind of got a briefexplanation. It was like, well,
actually, that's kind of not it.
You know, there's other thingsthat they can help you with. And
then seeing, that's when we gotto, when we got to meet Charlie.
So here, Charlie, what is therole of a nurse with hospice?
(03:07):
Well, I guess, because we are acommunity based hospice, our
work is within people's homes orwherever they call home,
and I suppose at that initialmeeting, it is getting an idea
of what's happened up to thatpoint, what disease has occurred
to cause them to need to beunder hospice, and getting to
(03:30):
know that person, their family,their sort of support network,
what the main issues are. And Iguess, sort of starting some
conversations about wishes forthe future. Our role is to
really help support people tomanage their symptoms and to be
cared for where they want to becared for during that time of
(03:50):
deterioration, and I guess inthose last sort of days, hours
of life as well. And that was,and that was a that was the
biggest thing for us, is, waswas keeping Angela at home for
as for as long as possible, andso thinking that preconception
that she was going to kind of betaken away to then have that
(04:10):
kind of like, no, no, no, no,no. Like, we're going to do what
we can to keep her at home andmake sure that you know that
she's okay. Was like this, like,oh, okay, all right, now we can
kind of open ourselves up to,you know, what you guys actually
do? So hearing that we'recommunity based already starts
(04:31):
to break that preconception thatI think a lot of people have in
the Hospice is a place that yougo, and although there are
inpatient units that people cango to if they need to,
like you said, Charlie, thepredominant support that we
provide is where people want tobe. And I
(04:52):
think we're quite unique in WestAuckland in that and we have a
fabulous community team tosupport people, because we.
Know that generally, people wantto be cared for in their last
days in the place they callhome, whether that is their own
house or a rest home or a hostelor wherever that may be. And I
(05:13):
think probably thosemisconceptions are based on
older values of hospice, perhapswhether that was the case when
hospice only got involved inthose last phases, but very much
now, it is about living everymoment and trying to enhance
someone's quality of life asmuch as possible. Yeah, yeah.
(05:34):
And I mean, Iwhen I talked to a friend of
mine leading up to today, she'dalso she had an experience where
she was standing in line at thebank, and
a girl behind her was wastalking to a friend and was
saying, Oh, my dad's reallysick.
And, you know, we're not surehow long he's got left, and my
(05:55):
mum's really struggling to lookafter him, and stuff like that.
But we don't want to callhospice, because they'll come
and take him away and and thingslike that. And so my my friend,
having seen what what happenedwith Angela, was kind of like,
hey, look, I'm really sorry tokind of eavesdrop, but I just
kind of need to jump in here.
That's not what they do. And soshe kind of explained, you know,
(06:19):
our experience to this girl, andthis girl, like, hugged her and
was crying, was like, Oh my God,thank you so much for you know,
we didn't know, and now we canget this help. So, yeah, it is,
it is a pretty strongpreconceived idea about what
happens. And are these one ofthose things, unless you need to
know, you don't seek theinformation. So you just hear
(06:39):
what you've heard from otherpeople. You're not going to give
yourself that education aboutwhat the service offers if you
don't need to know so it and asmuch as we really plow into
trying to get that message outthere, I think people don't
listen unless they need to.
Yeah, yeah, because we don'tlike to talk about death and die
(07:01):
as well. No, yeah, which is partof which is a big reason of why
we're here today doing this, andwhen we first started this
podcast, it's one of the reasonsright is going, Yeah, you you
don't know what you don't know,but actually you know kind of
all need to know. Yeah. So yourfirst couple of visits,
(07:22):
Introduction to hospice. Whatwas that like for you and for
you and Angela,after the, you know, the kind of
initial, kind of like, okay,yeah, this is a, this is a road
we're going to go down.
It was, was reassuring, youknow, it was in especially kind
(07:43):
of getting that kind of feelingthat actually, we we could do
this, and, no, we weren't goingto be by ourselves. And, you
know, there's that initialperiod where it's like, you
know, we're going to pop by,kind of once a month kind of
situation. And,you know, okay, oh, that's, you
know, that's, that's cool, and,you know, and that progression
of, okay, well, now it's once aweek, and then, and in our case,
(08:05):
that was really, really quick,you know, it was kind of, it'll
be once a month, and then it wasa week later. No, no, we're
going to be here every week,kind of thing to every day. So
the big thing was, it was, itwas reassuring. I think it was,
it was comforting for for us,but I think even more so, it was
(08:29):
comforting for Angela. I thinkit took kind of a lot of fear
away from her, thinking, Well,where am I, you know, where am I
going to end up? You know, am I?
Am I going to be taken away frommy family and in things like
that? And so I think that was athat was a really, really big
part of it. Andyou know, when you you might not
(08:49):
have noticed, but when, when youcame into the house, you could
see her kind of just go,like, I don't have to have these
amateurs kind of looking afterme, the professionals here, you
know, goodness, yeah, thankgoodness. Like, because as, as
good a job as these guys aredoing, you know, tell it, yeah.
(09:10):
And so, like, and it was aphysical thing, you know. And
she, you know, she was in thehospital bed or, or, you know,
like, she, you could just seeher whole body relax, like, Oh,
good. Someone's gonna reassureme, or someone's gonna tell me
what's, you know, what's goingon. And also, you know,
someone's gonna reassure themthat you know, that everything's
(09:32):
okay.
So, yeah, that was, yeah, Ithink that was, that was a
really, really big thing fromus. Yeah, I'm curious what it's
like for you, Charlie, whenyou're first meeting or going
into the home of the patientsand meeting the whanau, we get
(09:53):
such different we're WestAuckland, so we get so many
different people, which is whywe love.
Of it, but also people at verydifferent stages, some people
that are quite early in theirjourney, and others that maybe,
like Angela's case, had such aquick progression of things.
What's on your mind when you goin? What some what do you do?
(10:15):
Yeah, I guess with Angela aswell, the like you said, the
referral was, you know, straightafter biopsy results and
diagnosis. And the thought wasthat we had quite a bit of time
ahead of us. So already, whenyou get a referral and you look
through that clinicalinformation, you're making a
picture of, okay, this is whatI'm expecting to see. These are
(10:36):
probably the symptoms. This ishow it's probably going to go
based on previous experience.
Have a look through mention offamily and that kind of thing.
But really, just have to go inwith such an open mind, because
you don't know what people'smisconception or pre conception
of hospices. You don't reallyknow where they're at in their
acceptance of a disease, whatother sort of factors are going
(11:00):
on and to influence that withintheir home, within their sort of
social environment.
So it can be a bit uncertain, Iguess, because you don't really
know what you're walking into.
And I think for me, at thoseinitial assessments, it really
is just gathering informationfrom I always go in, not
assuming that people know what'swritten on my referral. Because
(11:24):
sometimes they've been toldthings but they don't remember
it. And I don't want to be goingin and saying, so you've got
this and this, and they're like,Mort so I always go in assume
that we know nothing, and asksomeone to tell me, okay, what
has happened up until thispoint, tell me what's led to me
being here, and then I can getan idea of how they're thinking
(11:45):
about things, and then justlearning what's important to
them, What then is, what theirlife is, and then an opportunity
to really explain our servicesand maybe just get rid of some
of those misconceptions, Iguess, yeah, yeah. And I
remember a nurse saying to meone time that the first thing
that they do when they go on issay what's important to you
(12:07):
right now. And to me, thatspeaks to the whole it's about
the person the and we're here onyour terms,
which, again, I wonder isanother preconception that
people think we're going to comein and take,
yeah, and I think, andespecially in that beginning
(12:28):
part where, and a lot of, a lotof our journey was we don't, we
didn't know what we what wedidn't know, right? And so, and,
and we also, we don't know howserious it is, like, obviously,
you know the whole picture, yes,it's, yes, it's very serious.
But,you know, we don't know what,
what help she needs, you know,and,
(12:49):
and I remember, you know, likethe, you know, there was all the
equipment that we needed, youknow, the shower, the shower
stuff, the, you know, the, Ican't remember what it's called,
The sliding shirt, the horn tothe sliding sheet, or the hoist.
That was an experience,the thing with wheels that goes
over the toilet I can, oh, thankyou, yeah, you know, so stuff
(13:11):
like that. And we didn't havethat stuff, you know, we didn't
know that we needed that stuffor that it was available, and it
was, it was quite It wasamazing. Like, it was kind of
like, okay, guys, this is whatwe're going to do. Bang, bang,
bang, bang, bang, bang. And thestuff was there, like, you know,
within, within days, you know,and it was like, Oh, okay. Like,
(13:33):
great. Like, we can kind ofstart kind of getting used to
what this is, and, and all of asudden she's got a little bit
more freedom, I guess. And, youknow, and her safety and things
like that are all kind of partof that. And so that was, yeah,
so that was really, really cool,like, it just how quickly things
(13:55):
happened, you know, it wasn't acase of, well, yeah, we might
need this. And we, you know,yep, we'll sort that out. And
two weeks later, there was, youknow, it wasn't like that. It
was just like, here's the thingsyou need, here's the things that
we've sorted for you, andthey'll be here in a few days.
And if it doesn't work, that'sokay, we'll come and take it
away and and it was, yeah, itwas really, really good. So a
(14:18):
lot of especially with Angela'ssituation and how quickly it was
changing. How did you managenavigating that, Charlie?
Because Angela wouldn't havebeen the only person that you
were supporting and caring forat the time. What what is the
life of a nurse look like interms of your caseload and your
work? It's very busy. Esther,I mean, I hardly see you in the
(14:39):
office, so I'm assuming it'sbusy. I guess you have to
prioritize Angela, to be honest,that from the day I met her, was
a priority because I knew howunwell she was, and I could see
her deteriorating quickly. Andwe have a range of patients on
our service, some who are very.
(15:00):
Be on there, like Angela, somewho come onto our books even in
the last days, and then some whoare very stable, and we just
sort of support them in thebackground.
So prioritization is one, andtrying to kind of keep ahead of
things. So my feeling isvisiting more frequently, so you
can notice those changes insomeone. Because I think when
(15:21):
you're with someone all thetime, you perhaps don't notice
those little deteriorations. Andthen when we go in, we might
think, oh, that doesn't look asshe doesn't look as strong as
she did last week, which doesn'tseem to be moving so well.
And I guess we have a widerteam. It's not just me, it's not
just the nurses. We have oursocial care team. We have our
(15:41):
healthcare assistants who canhelp, you know, do some of the
practical things at home. Soit's not just on one person.
And I think, always empoweringpeople when they're at home to
say, Look, don't assume. Don'twait for us to call you. Tell us
if things are changing, like wethink, no news is good news, but
we are there 24/7 we've got thatamazing support after hours on
(16:05):
the phone with really goodspecialist nurses who can advise
you. So yeah, I think it'smaking sure the team used as a
whole Yeah, and that's in, andthat's a big part of it is, is,
yes, yes, she's changing, but,but I'm there every day, and so
I don't, you know, I, I justdidn't see it, you know, you
(16:30):
know, kind of be a week laterthat you'd be like, Oh, that
that doesn't seem right.
And, you know, having, havingyou come in and, and having
those, those kind of frankdiscussions, right? Like, hey,
actually, yeah, we've gone fromthis and we're kind of
progressing quite quickly.
(16:51):
You know, I, and not everyonemight appreciate that, but I
really appreciate it. Just, youknow, because of who I am, I
would rather just be told, Hey,this is, this is the case. I
assume that not everybody is.
Yeah, you've got to gage it ayou know, there's the sometimes
those conversations have to beon the hope I wasn't too sort of
honest, and sometimes you've gotto just take it step by step and
(17:13):
just sort of introduce the factthat things don't seem as good
as they were before. And itreally, and I think that's the
the importance of as nurses, wehave a caseload of people, and
so you do get to know thatperson and that family, and you
know how to pitch that thoseconversations, yeah? Because
there's different some peoplewant to know everything and want
(17:35):
to be kept up to date, andothers maybe would rather not
know and just roll with thechanges, right? Yeah, we're
going to explore a little bitmore in a future episode around
Angela's changing condition, andparticularly when she's starting
to deteriorate to the pointwhere we're entering her last
days of life, and things reallyramp up there. I'm curious to
(17:57):
know,in hospice world, we talk a lot
about goals of care and careplanning, and so I imagine the
initial assessment and thosefirst few visits are where we're
starting to really get a picturefor our patients and our whanau
around what's important, whatare the goals? So the the
(18:22):
main thing for Angela was, wasus not seeing her suffer. So
Angela's mum passed away andfrom stomach cancer, and that
happened, she was diagnosed, andthen two weeks later, she was
she was gone, so, and it wasfrom, from I wasn't there. But
from what I understand, it wasquite traumatic and stuff. So,
(18:42):
so from the from the verybeginning, from the time she was
diagnosed, Angela was like,right? This is, this is my life
now, and and I can't do anythingto change it, and I just have to
be as pragmatic as as possible.
So, so that was a really bigthing. And I think
(19:03):
being at home,which was not only where she
felt comfortable, it was also,you know, and we went to know
this at the time, but we hadsuch little time left, right,
and so, so being at home wasreally important to her, because
she felt safe,you know, her, her dignity and
stuff was really important toher.
(19:30):
And so, yeah, so those were thereally, really big things.
Her big thing was making surethat we were okay, you know, and
that we were we were managingthis, you very rarely, you know,
did she get upset?
And, you know, it was more, youknow, making sure that that that
(19:51):
we were okay.
How? How common is that Charliefor the concern of the patient?
To actually be making sure myfamily's okay. I think it's
hugely common, and I think it'snormal as a mother, especially,
to worry about the impact ofthat situation on their family.
(20:16):
And I've Yeah, I think that'svery common, and I think that's
part of someone's journey, Iguess, is to
working through that. So that'snot sort of affecting them as
they're deteriorating as well.
Yeah, and I think it's, it's avery hard thing to to talk
about, because it is going toaffect people, watching the
(20:37):
person they love deteriorate andchange and enter into that final
phase. There's no two ways aboutit. It is rubbish and and, yeah,
you can't always change them.
And there's the dignity side aswell. When you're starting to
care for them, you know you andbecame her caregiver as well as
(21:01):
her husband. So there'sbalancing that relationship as
well, yeah. And I think, Ithink, like, I say, Look, when,
when you would come over, therewas that relief, right? And I
think,I think that was also part of it
for her, was she was so worriedabout me, and, you know, in the
kids and stuff like that. And soremember when we, when the when
(21:24):
we organize the carers to comein, yeah,
I know, knowing Angela, as I do,like, you know, to have someone
come in and and shower her andand all of that kind of that was
a massive, massive deal for her,and, and she didn't do that for
her. She did that for she didthat for us, you know,
(21:51):
and, and that's what I mean,like when you would come in, I
think it was relief for her thatshe didn't have to have us look
after her, but also because sheknew that that it would give us
respite, you know, yeah, yeah. Ithink it would, if that relief
that you saw in her was reliefof all their getting some
(22:11):
support as well. And because Ithink when you do get into that
phase of needing external carerscoming in, it's quite a change
in your life, you know, itsignals something has changed
for Angela, but then it's alsosomething very, very different
to have someone come into yourhouse to do those personal
cares, and it didn't work outoverly well for you guys, and I
(22:37):
think that was probably a goodtest. And actually, you guys
found out that actually it wasbetter to do it yourselves,
yeah, and, but yeah, I think sheknowing Angela, as I did, it
would have been that relief of,oh, okay, so that's one less
thing found to worry about andto physically do as well. Yeah,
yeah. It speaks to the fact thateverybody is impacted by, you
(22:59):
know, Angela had the diagnosisand was the one going through it
herself, but there's that wholefamily around her also
experiencing it and also goingthrough it, and life happens as
well. We talk hospice is qualityof life, living every moment so
trying to balance that you know,knowing you've got this finite
(23:22):
time left with your loved one,and balancing that and spending
that quality of time with her,doing the things she wants to
do, while also adjusting tothese changes of of her needs.
Did you had a trip planned? Iheard, yeah, so
(23:45):
as soon as, as soon as she'd hadher had her biopsy and stuff
like that, her Angela's cousinsset up a
give a little page, that's whatit's called. And,
you know, we were kind ofagainst the idea at first, and
they were like, look, there'sloads of people here that want
(24:07):
to help. They don't know how tohelp. Some of them can't help in
any other way, so you have tolet us do this. We're like,
Okay, that's cool. And like,was, it was overwhelming. It
was, you know, the generositywas really overwhelming. And,
you know, as soon as she wasdiagnosed, she was like, right,
we're making memories. We've gotto, you know, we've got to do
(24:29):
something. Andwe were at the mall, and she's
like, we're going on a cruise.
Like, what do you mean? We'regoing on a cruise? She's like,
they give a little money. Wewe're going on a cruise, right?
Okay? Like, Well, I'm obviouslynot going to stop you, because
(24:49):
no one's going to stop you. Andwe march into an unnamed travel
agent and and she sits down andshe and she tells the person,
the.
Story. This is, I've beendiagnosed with this. I'm taking
my family on a cruise. And thetrail edge was just kind of
like, okay, like, here we go.
You're very matter, yeah, yeah,yeah. And, and she was like,
(25:11):
right? I've never been to theSouth Island, so the I don't
care where the cruise goes, aslong as it goes through the
South Island. So okay, well,here we go. Here we go, this
cruise. Would you like toupgrade? Yep, that's fine. We'll
upgrade. So I think it got tolike,
like, $20,000 right? This, thiscruise. And I'm like, I'm
(25:33):
staying behind her, looking atthe prices in this book. And I'm
like,My Love, are you? She's like,
this is what we're doing. Like,okay, I just put the book down.
I'm like, whatever. And justthere was it in. The guy was
like, Okay, well,the cruise is in like, two
months. Like, so you have to paythe deposit tomorrow. Oh, no,
(25:54):
sorry. We have to pay for thewhole thing the next day. And
it's like, Okay, how much is it?
Was $20,000 Oh, my God, we canget $20,000 Rob
after the bank. Yeah, yeah. Andso paid deposit and ready to go
on this cruise andwatching YouTube videos of kids.
(26:15):
This is this cruise, like a 15day cruise, you know, it was, it
was nuts. She been on a cruise.
No for, no, no, no idea if shewas going to get seasick or or
anything, you know, and she but,but that was it. You just
weren't going to stop it. We'll,we'll sort it out. And she was
(26:37):
like, I'm getting my KiwiSavermoney. We'll just, we'll just
sorted out, all right, and so,yeah,
unfortunately, in all of thehaste of booking,
they forgot to mention that togo on a cruise, you'd need it's
mandatory to have travelinsurance, which someone with a
(26:57):
terminal illness is not going toget.
So there was a bit of arigmarole around that, and we
ended up not going on thecruise, unfortunately.
But then then she decided, well,if I can't go on the cruise, I
want to spaso within a week, we we had a we
had a spa pool, and,yeah, it was, it was just like,
(27:19):
you can't argue with her, yeah,but I think you know, if she
wasn't sick, but she was in thatmind frame, you were like, Okay,
look just to, we're just goingto do that, and that's fine. So,
yeah, so we, we ended up with aspa pool. She got in it, she got
in it. Yep, she got to, she gotto go on it twice.
(27:41):
Unfortunately, only twice,because we had the little, the
little incident with thetoenail, yeah. So I was
reminding myself of thatinstance
Aaron was, I think, helpingAngela in the bathroom, or the
shower, and He clipped hertoenail. Well, yeah. I mean,
there's putting a lot of blameon my shoulders there, but she
(28:01):
put a lot she did, she gettingher in the shower, and our
shower was not fit for purpose.
It was, yeah,and so I'm getting her into the
shower, and I'm by this stage,and you know, like that hasn't
been very long, but I'm havingto hold her up and get her into
the said supplied shower stilland,
(28:26):
and trying to wriggle her inand, and she goes to put her
foot down, and she clips her toeon my foot. And I think by that
stage, she was on chemo andstuff like that. So then they'll
just pay you off. Yeah. Andshe was like, Ow, that was it.
And I looked down and there'slike, there's blood everywhere
(28:47):
in the shower. I'm like, whathas happened? She thought my
toenails has come off. It wasjust so matter of fact, and so
obviously she can't go on thespa with a with a missing
toenail. But she told everybody,I bet she does, everyone to come
in and apart. Why is yourbandage on your toes wear and
rip my toenail like, okay,that's not how that happened.
(29:08):
Yes, it is okay. I can't go andinspire anymore.
Yeah, yeah. Soso she did. She, she did get to
to go on it twice, and yeah, andshe, she loved it. So was Angela
when she was first admitted tohospice West Auckland. Was she
(29:28):
still receiving treatment of anykind? Aaron, it was like three,
as it started, like three orfour days after our initial
introduction to hospice. So shewas going to, she was going to
the hospital every dayfor her radiation, and she was
doing, and she was doing chemo,oral chemo,
(29:52):
yeah, from from home, so I washaving to administer all of that
as well as thesteroids. And, yeah.
Yeah, anti inflammatories andall of that kind of stuff. Yeah?
And what was that treatmentabout? Charlie? Can you weigh in
on it? Yeah, I suppose it. Wetalk about cancer treatment with
(30:13):
a curative intent or with apalliative intent, and we knew
for Angela that we that diseaseshe had wasn't going to be
cured, but the purpose of thatwas to try and slow down that
growth and perhaps reduce theimpact that was having on her
day to day. And so I think whenyou're having palliative intent,
(30:35):
you've got to sort of weigh upthose pros and cons, haven't
you? And when people are in thatsort of treatment cycle and they
just feel like they've got tokeep going, but the side
effects, perhaps are just awful,and nothing sort of changing in
terms of symptoms. And thenpeople start to perhaps make a
decision about actually, is thepayoff going to be worth it? Is,
(30:56):
are the side effects of thisworth what it's going to give
me? AndI think that's very hard for
people, because with a curative,you know treatment, you know
that you've got to slog it out,but yeah, the end result is
going to be good, yeah, whereasit's very unknown with
palliative. And I think forAngela, that was really clear,
because the assumption was she'dhave this treatment and then you
(31:17):
that would buy her some quitegood long time. And that wasn't
the case at all, was it? And theundertaking of getting her into
hospital every day to Aucklandas well for radiotherapy, when
she was becoming more and more,you know, poor mobility is just
took its toll, didn't Yeah, and,I mean, it was, you're right, it
(31:41):
was, it was getting hard and,you know, and kind of, as it
kind of progressed, and she wasscheduled to have six weeks, and
this was to go over the kind ofChristmas, New Year period, so
it was all through summer andstuff like that. And, and we
were having to go in theeveryday, I think we got
Christmas and boxing day off,which was nice,
(32:03):
but as that kind of as as shekind of as the illness
progressed so quickly, it kindof was taking two of us to kind
of get there. TheI guess the positive side for me
is, you're right, like I knewthat there was not going to, you
know, there wasn't going to bea positive outcome, ultimately.
But you always had, you had hopethat, yeah, you know, it was, it
(32:25):
was gonna kick in and, you know,and they said, you know you're
gonna, you're gonna feel worsebefore you get better. And so
you kind of had that hope, okay,yes, she's, she's getting worse,
but that means that they'regetting better is just around
the corner. And then there's thethe emotional side of it too,
(32:46):
wherewe had so many people at our
house all the time wanting tohelp and support and just come
and see her and stuff like that.
So moments to ourselves were fewand far between, and those those
those trips to the hospital wereactually just time for me and
Angela to to just be byourselves. And, you know, and we
(33:10):
got it to a point we had alittle routine where, you know,
we'd go and get a hot chocolate,and then we and I didn't, I
didn't buy a hot chocolate onetime,
you knew. And it's, uh, not onlydid I know it, but when we went
to radio, when we went to radiotherapy, they were like, you
know, we took her in and she'sin a wheelchair. And they were
like, Angela, how are you today?
And you know, you spend, youknow, every day for these people
(33:32):
for an hour, and you know,amazing people, when they're
just like, Angela, how are you?
And she's like, Well, I'm notreally well actually. And
they're like, you know. And theyobviously start thinking, Well,
what's medically wrong with it?
Oh, what's that? He didn't buyno hot chocolate. He said that I
hadn't been a good girl.
Was like, well, actually, wejust didn't have time. Because,
(33:56):
you know? And like, oh, wow,Aaron, that's, that's really
terrible,if we show them the time.
Terrible, yeah, oh, 100 youknow, but, but it gave us those,
you know, the drive to and the,you know, and even just those
little moments when you, whenyou're when you're waiting, and
thankfully, they run it prettysmoothly. You don't have to wait
(34:18):
too long, but, you know, you'dbe in the waiting room, and that
was just time for us to sit. AndI would always sit behind her,
and I would, you know, just hugher while we were while we were
waiting. And we had our ownlittle, you know, wasn't ours,
but you know, we had our ownlittle area where we always went
to and we always and we alwayssat and so that, you know you're
(34:38):
going through this, thisterrible, terrible thing, and
but you're finding these littlemoments in the most random of
placesyou know that that we get to
have, that only, you know, onlyher and I get to have. And so,
yeah, and it was.
(35:00):
Yeah, it was really nice, sospecial to be able to find those
important moments and what couldhave been, and probably was a
really stressful event. What wasthe impact for you and Angela?
You've got this treatment that'shoping to prolong things and
improve things to a point, youknow, it's not gonna fix her,
(35:23):
but to then hear after threeweeks, it's it's not, what's the
impact on you? How do you copewith that? Well, I think that's
kind of where you came in,right? Because,
because it was you for me, like,I said before, like, I just want
to be told, right? Like, itdoesn't matter whether it's good
news or bad news, I just want toknow. And,
(35:46):
you know, I think that's kind oftakes a special kind of person
to actually be like,This is what's happening. But,
you know, and I get that noteverybody wants you know, not
everybody wants to know, but Iwanted to know. And so you and I
would have these discussions,you know, out of earshot of
Angela, and I would be like,just, just tell me, what's where
(36:06):
are we at? Because I, you know,I might not see it every day,
but I could see that, you know,it was like, you're waiting for
that moment. I was like, thismoment isn't happening, you
know. And so that's when I oncehe come to you and be like, just
tell me, you know, I I gottaknow what you know, what's going
on, yeah. And I think that's theimportance of knowing someone
(36:33):
earlier on, yeah. And because itmight have felt a little bit
early that we were involved soclose to her again in that
diagnosis, but actuallyI was then able, hopefully to
support you because we knew eachother, and maybe that sort of
supportive relationship was moremeaningful than me coming in as
the first time being like, Well,okay, this is what's happening.
(36:56):
Yeah, and you know, I could kindof gage knowing you as a person
by then, you know how to sort ofhave that conversation with you,
yeah. And I going back to sortof what you said about hope, and
Andrew, always wanting hope. Ithink that's so important. And
in my role, I never want tosquash hope and be like, Yeah,
this isn't going anywhere. Idon't know that. Yeah, and you
(37:20):
know, we're all trusting thatthe the intention of the
treatment was to have a goodoutcome, and so I suppose I'm my
role is, yep, that's the pathwe're on. But if that doesn't
help, and signs maybe indicatethat it's not, then this is
maybe what we need to preparefor. Yeah, you learn for the
worst and hope for the best.
(37:42):
Yeah. And I think hope is soimportant for people, for
patients, for families,and we don't want that the
presence of hospice to be thereason why people lose hope. We
actually want to help them gainsome more hope that they're
going to be supported in thatjourney.
Yeah. Yeah, and, yeah. And Idon't think, I don't think
(38:03):
Angela ever lost hope. I think,you know, when I look back now,
I think, I think she knew, and Ithink that's why she was able to
just be likethe, you know, this is it. And I
think, yeah. And I think thatpart of that, of
the I don't want them to see mesuffer, I think, you know, but
(38:26):
like, and then we're getting abit philosophical now, but part
of me is also like, because ofthat, I wonder
if that's why it happened soquickly. She hadn't given up
hope, but she didn't want todrag it out, you know. And so,
you know, they say that the youknow, that your brain and your
body is a powerful thing. Andyou know, if you want to fight
(38:48):
something, you can fightsomething, yeah. And I'm not
saying that she gave up, but Ithink part of her was like, I
don't want to put them throughthis, you know. And hence, you
know, the reason it potentiallydid that didn't go it, you know,
we had multiple prognosis wehad, you know.
And that's not how it, you know,and that's not how it played
out. And nobody thought thatthat's how it was gonna there's
(39:11):
gonna play out. Yeah, I alwaysremember that she didn't want
that final stage to beprotracted, you know, if this is
what was going to happen, then Ithink she just wanted it, wanted
it to be done, really, didn'tshe? She, you know, the
suffering, I think, for her, wasthe length as well of that
period of not being out of carefor herself, and not being able
(39:31):
to communicate and those kindsof things. Yeah, it's really
important for her. Yeah,absolutely. And with Angela, and
how quickly things happened forher that speaks to me about the
importance of taking those smallmoments that you had to treasure
with her. You know, waiting in awaiting hall, buying a hot
(39:52):
chocolate, or being absolutelyroasted or not buying new one.
You know, taking those smallmoments.
It's a treasure. Is soimportant, but also really hard
to do.
Yeah, I know it's like, it's Ialways, you know when I, when I
look back at it, you know whichI do pretty much every day, it's
(40:12):
like it was the, theworst thing that that could
happen to us, like, can I like,you don't you don't get much
worse, right?
But out of that were also someof the best moments that, you
know, that that we had,yeah, just yeah, get on light in
(40:33):
the darkness, you know, kind ofthing, you know. And those will
just live with me forever. Yeah,and I think that's probably a
good time for us to wrap up. Sothank you, Charlie for joining
us today. In the midst of all ofthis, there's four kids as well,
so we've talked a lot aboutyours and Angela's experiences.
(40:57):
Next episode, we are hoping tobring in our creative arts
therapist, Catherine, and we'regoing to talk about how you
navigated this with the kids.
It's a huge question, what do wetell them? How involved do we
get them in caring for Angela,but balancing? How do we make
(41:19):
sure that they're supported andprotected as well. Thanks for
joining us. You.
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