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How we supported Dad to die at home
Episode 29 • 5th November 2024 • Your Aged Care Compass • Coral Wilkinson & Michelle Brown
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As Dad’s end of life approached, we worked together as a family to keep Dad comfortable and safe. We had great support from Coral’s GP, Dad’s geriatrician, and Dad's amazing carer, Kath.

Those last days were an emotional rollercoaster but from them we have some very special memories. Dad kept surprising us, right up until he took his last breath.

This is our story of supporting Dad to die at home. We want you to know that how you choose to support a loved one as they approach their end of life is entirely your choice. Whatever you decide to do, it’s okay.

In this episode:

  • The functional gains Dad made on transition care were short lived
  • Dad started to decline again as he approached his end of life
  • Coral moved Dad to palliation with the support of her GP and Dad’s geriatrician
  • The changes that made us realise Dad was approaching his end of life
  • The emotional rollercoaster of Dad’s last days
  • Managing pain and keeping Dad comfortable
  • Remembering the special stories
  • Dad’s emotional connection to music
  • When dad took his last breath
  • How you choose to support a loved one at their end of life is very individual and whatever you do, it’s okay

Resources mentioned:

Related episodes:


Connect with Coral Wilkinson: 

  

More about Your Aged Care Compass podcast: 

Are you supporting an older loved one at home and ready to give up because it’s just too hard? Your Aged Care Compass is aimed at anyone who is caring for an older loved one who still lives at home and is wondering what support is available to them.


We're Coral and Michelle, the sisters behind our business, See Me Aged Care Navigators.


Coral is a registered nurse with over 30 years’ experience in both health and aged care. A former assessor with the aged care assessment team, an advocate and author, there’s not much Coral doesn’t know about Australia’s aged care system.


Michelle is a former pharmacist with over 30 years in the public health and private sectors of pharmacy. Michelle is now client care manager for our business. 


Our story started as one of supporting our parents to remain in their own home, to be as independent as possible and remain connected to their community. We reached a point however, of needing extra support and we achieved this because we know Australia’s aged care system so well, we knew what programs could assist us and our parents.


This podcast, Your Aged Care Compass, brings together not only our personal experience in supporting our own ageing parents but also our vast professional experience in supporting other families to keep their loved ones at home. 


We will help you makes sense of Australia’s aged care system, from your first contact with My Aged Care through to the different funding streams and assessment workforces, management options for home care packages and extra funding that people might be eligible for.


There's so much more. Topics relating to dementia and legal and financial considerations will be covered, as well as real life stories of where it went wrong for people and how we guided them to get it right.

 

Your Aged Care Compass will guide you clearly and compassionately to the right support at the right time for your ageing parents and loved ones. 


Like what you hear? Please leave us a Rating and Review. We’d love you to share this podcast with any friends or family who have older loved ones.

Transcripts

Michelle:

Hi everyone, and welcome to today's episode, how

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we supported dad to die at home.

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If you've just tuned into the podcast

for the first time, we've been discussing

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Dad's diagnosis of dementia, his hospital

admissions after the four strokes he

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had in his last year, and how we brought

him home from hospital each time.

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After the fourth stroke, Dad was

left with significant functional

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limitations, meaning he needed a

lot of help with all aspects of his

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care and his cognition had declined.

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He was moving towards his end of life.

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In today's episode, this is what

we're going to be talking about,

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how we supported dad to die at home.

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In last week's episode, we talked

about bringing dad home from hospital,

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Coral, and how you negotiated with

the treating medical team and allied

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health clinicians to make that happen.

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Dad paused his home care package

services and was approved to come

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home on the transition care program.

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For 12 weeks, he had a team of

different allied health clinicians

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attending the home, helping him

regain some of his function.

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Which he did, but his advancing dementia

meant that the gains he made while on

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transition care were short lived and you

began to see his function declining again.

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Talk us through what was

happening at this time.

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Coral: After dad finished his

TCP transition care program,

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Shell, he was doing quite well.

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His legs were stronger and he

was able to get in and out of the

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chair and bed with assistance.

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He could walk, though he

was unsteady on his feet.

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He regained quite a lot of function

from the 12 weeks of rehab under

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the transition care program, but the

functional gains he made were relatively

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short lived, as in a couple of months.

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We couldn't have predicted this at

the time that he was on TCP, but after

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about two months of concluding this

program, he began to decline again.

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This wasn't due to another stroke, it

was related to his declining cognition

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and his body beginning to shut down.

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Michelle: Yeah.

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What happened next, Coral?

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Coral: I realised Dad was approaching

his end of life, so I set about

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organising what I needed to, so

we could keep Dad at home to die.

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I transferred Dad's care to my GP, as

Dad hadn't seen his own GP for a very

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long time, and my GP was willing to take

Dad on for the purpose of supporting me

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with the medical needs for palliation.

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I had dad referred to the community

palliative care team in the hope that

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they'd be able to support us if needed.

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And I had many conversations with

mum to make sure she was okay with

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what was happening and ensuring

she knew what could happen.

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Michelle: So how did you

know what to do, Coral?

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Coral: I'd always been interested in

palliative care, Shel, and I'd supported

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people and their families to have

a good death in hospital or at home

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if that's what they'd chosen to do.

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I was comfortable with death.

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And I knew the signs and knew what

to do if things like pain arose or

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if Dad stopped eating or drinking.

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Michelle: I know there was one thing you

were particularly worried about that was

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beyond your control though, wasn't there?

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Coral: Yes, there was, Shel.

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There was one thing that I couldn't

have managed at home, and that was if

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Dad had had a fall and broken a bone.

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I wouldn't have been able

to manage that at home.

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He would have needed to be

transferred to hospital.

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I was actually terrified of Dad

having a fall because it would have

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been catastrophic for him, and I

knew he would have died in hospital.

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Michelle: Yeah.

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But by some grace of God,

Dad didn't have a fall.

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Coral: No, he didn't shell.

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I think I prayed every

day that he wouldn't fall.

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You know, he was so unsteady on his

feet, and it was scary to watch him walk.

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But he didn't ever fall, thank goodness.

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Now you might be wondering,

listeners, why someone wasn't with

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Dad every time he got up to walk.

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At this time, it was impossible

to predict what Dad wanted to do.

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He wasn't communicating verbally,

and he didn't gesture to us that

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he wanted to get up from the chair.

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He'd always been very active and played

sport his whole life, so his legs

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were really still quite strong, even

though he'd had all those strokes.

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And his cognition was so

advanced at this time.

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So there was no reasoning with

him about waiting in the chair

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until someone could help him.

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we'd look at him and he'd often appear

to be asleep in his recliner chair.

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And, you know, you'd think,

right, I've got a couple of

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minutes or a few minutes here.

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I can quickly run to the toilet or I can

make myself a sandwich or do something.

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And you turn your back to do that.

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And And, and I'm, you

know, this is quite brief.

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And when you would turn

around again, he'd be gone.

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He'd been out of that chair and gone.

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Uh, he, you know, at these times it was

as quick as like a flash of lightning.

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and then other times when we would try to

get him to stand, it just wouldn't happen.

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He, you know, he didn't budge.

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Michelle: He didn't budge.

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Yep.

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So, tell us what you saw.

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So the changes in Dad that

made you realize his end

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of life was getting closer.

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Coral: Over the weeks, of Christmas

:

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withdrawn, like, less present.

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His appetite had diminished a lot,

and he was eating only a few spoons

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of soft and sweet food at that time.

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He was losing weight, of course, and

becoming much frailer, and he was

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beginning to sleep a lot more too.

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Michelle: Yeah.

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I remember seeing those Christmas

photos of that time and seeing

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how he was literally fading away.

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There was no doubt in my mind that he

didn't have much time left with us.

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Coral: That's right, Chell, and then

you jumped on a plane and came back.

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from Christmas Day, Dad's

decline hastened rapidly.

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He was spending more and more

time in bed, and had virtually

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stopped eating and drinking.

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I knew we were on borrowed time

by this stage, and that Dad could

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have passed away at any time.

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Michelle: And there were a few

false starts there, weren't there,

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Coral: Yes, there were.

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What a rollercoaster of emotions

during those last days, Shell.

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I remember one day very clearly, Mum

and Sandy and I were in the bedroom,

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where Dad was lying in bed, and his

respirations were slowing down a lot.

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We thought this was it.

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And we were saying comforting things to

Dad, and just waiting for his last breath.

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But it was going on and on,

these very slow respirations.

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So, Sandy popped out briefly and then

she came back into the room just as dad

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opened his eyes and said, I'm hungry.

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and you know, we, we had been crying and

we had been saying our farewells to dad.

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And.

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telling him it was okay to go and then

he just opened his eyes and declared

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that he wanted something to eat and

honestly, I didn't know what to make of

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it and I didn't know whether to laugh

or cry and I can tell you right now,

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there'd already been a lot of crying

and at that point we actually laughed.

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Michelle: Coral?

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That is so Dad.

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Coral: surprising us.

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Michelle: And what else did you

notice in those last days, Coral?

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Coral: I noticed for the first

time that dad looked uncomfortable.

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So he hadn't, presented as experiencing

any pain previous to this, but at this

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time he really was beginning to look

quite uncomfortable and repositioning

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him in bed and, you know, doing

all the things that, that we could

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do to make him more comfortable.

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It just wasn't working.

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My guess was that he was either

constipated, and that was causing

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abdominal pain or perhaps there

was something else going on,

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most likely in his abdomen.

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my goal of course was

to keep him comfortable.

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I took some measures to gently

address the constipation and also

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began talking to my GP and dad's

geriatrician about pain medication.

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Michelle: And how did your GP and

Dad's geriatrician respond to you

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asking for strong pain relief?

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Coral: They were both fantastic Shell, so

my GP also works in residential care, so

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I knew he was familiar with palliation.

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I had the mobile phone numbers of

both my GP and Dad's geriatrician,

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and I called them when I needed to, to

discuss what medication we would use.

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They'd send a prescription to one

of the pharmacies in town and then

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I'd go and collect the medication.

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And then we began administering this, this

pain medication to ease his discomfort.

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Michelle: You mentioned earlier

that you had referred Dad to the

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Community Palliative Care Team, Coral.

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Were they involved at this stage?

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Coral: Not really, Shell.

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Regrettably, we didn't get

much support from them.

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They had promised we could call the 24

hour number for support or advice, but

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the two times I called, which were on

a weekend, the phone wasn't answered.

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so I ended up relying on my

GP and, dad's geriatrician to

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manage this part of dad's care.

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And you were on your way too, so I

knew I could talk with you about the

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medication and what we should do.

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I should let you know, listeners,

that Michelle was a pharmacist

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before she came to work for me.

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So this was very helpful in those

last days when we were titrating pain

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medication and deciding to see STADS other

medication that were no longer relevant.

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Michelle: Yeah.

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And Coral, that flight to Cairns

felt like it took forever.

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I was so worried that I

wouldn't get there in time.

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And I just kept saying, or

praying, I'm not even sure

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which one it was at the time.

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Hold on, Dad, I'm coming.

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Coral: It was always on my mind shell,

you know, would you get there in time?

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There were more episodes of Dad

seemingly have taken his last breath,

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but then he kept breathing again.

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He was by this time chain stoking

breathing, which, you know, is

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long periods of apnea or not

breathing, and very shallow breaths.

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And I remember just, staring at

Dad's chest, waiting for the rise

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and fall to see if he was in fact

going to take another breath.

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and wondering every time, was

this going to be his last breath?

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And, and, and were you

going to get there in time?

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Michelle: Well, I made it to Cairns, and

you picked me up from the airport and told

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me that you didn't think Dad was going

to get out of bed again, and possibly

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not even regain consciousness again.

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I so desperately wanted to see

Dad and let him know I was there.

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I was just so grateful

he was still with us.

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Coral: I remember when you came into the

bedroom, Shel, and I remember telling you

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this, that, that Dad wasn't conscious,

and he wasn't responsive anymore.

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but we'd been telling

him that you were coming.

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And I wondered if he was

waiting for you to arrive.

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It was the most remarkable thing when you

walked in and gently said hello to him.

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He opened his eyes and

tried to say hello back.

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His eyes lit up and he

reached out for you.

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Michelle: This is gonna make me cry.

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It was, it was the most beautiful thing.

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He knew who I was, and he

knew I'd come to see him.

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And I thought to myself, good on you dad.

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I knew you'd wait for me.

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Coral: I know he was such a stubborn

old bugger, I knew shell, you know,

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I just kind of knew he was going to

wait for you, and it didn't, it didn't

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really surprise me that he woke up.

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I mean, he'd been doing this

quite some days now, you know,

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we thought that we'd arrived at

that point and, and that was it.

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And.

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Lo and behold, he, he just opened

his eyes and, be present again.

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and, I remember I videoed that moment

where you walked in and said hello to

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him and it, you know, not going to just,

I don't really want to talk about it too

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much because it was incredibly a moving

experience and it's, and it's really

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difficult to watch that piece of video,

you know, even after all this time, but,

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it was the most sort of miraculous moment.

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And, um, you know, I'm ever so grateful

that he was as stubborn as he was

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and he he waited for you because

you know that flight from Perth over

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to Cairns that is a long flight.

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Michelle: It

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Coral: Um, and I just, you know, I'm

ever so grateful that you made it in

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time and that he knew you were there

and he responded to you speaking to him.

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Michelle: Yep.

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Coral: So, you stayed at Mum and

Dad's place and helped us, , with

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the care for Dad in what turned out

to be his last 24 hours with us and,

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and we didn't know that at that time.

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again, you know, I think he

realised you were there, and that

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he was okay in, in letting go.

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Michelle: Yep.

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Coral: At this time, we had only one carer

coming and she was an absolute gift to us.

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Kath was a very spiritual person,

and she was the emotional support

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that we needed, uh, to keep doing

what we were doing at this time.

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Michelle: Yeah.

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She, look, she was such, she was

such a calming influence and, and she

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eventually revealed things to us too.

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Coral: Yeah, she did, Shel.

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now I know this may sound really woo,

and people have their own beliefs

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around dying and after death, but

what Kath was telling us made perfect

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sense in terms of what she was seeing.

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Mm.

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Kath couldn't have known what the

relevance was in telling us what to do.

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what she did in terms of dad's life,

but when she realized we accepted

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a spiritual awareness of death and

disclosed what she was seeing to

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us, it gave us tremendous comfort.

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Michelle: Yeah.

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It's, it's quite incredible the

comfort you get when someone has an

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innate acceptance of death and can

support you through the process.

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Coral: So when you arrived, Shell, I did a

kind of handover to bring you up to speed

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with what was happening with dad's care.

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And I had told you that dad was bed

bound, he couldn't get out of bed anymore.

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But he did something that

night that surprised us all.

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Michelle: Didn't he just?

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Once I'd settled in and you took a much

needed break, I'm sorry, I'm laughing

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Coral: I know I'm laughing as well,

because it was just like this, emotional

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rollercoaster of unexpected things

happening, like it was kind of textbook,

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but it kind of wasn't because dad kept

doing these things that we didn't expect.

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And here he was, like, Literally,

literally on his deathbed, he was

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unconscious and we knew his death

was imminent and then he did this

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thing and, um, it just defies,

I don't know, it just Logic.

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Yes.

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Anyway, you tell

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Michelle: So let's, here's the story.

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So I'm prepared, you know,

dad's not getting out of bed.

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He hasn't been very responsive.

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So Coral headed home because she was

exhausted and I was sitting with dad

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and he looked at me, turned his head

towards his wheelchair and pointed at it.

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Unresponsive dad pointed at

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Coral: unconscious, Dad.

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Michelle: Unconscious dad.

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And I looked at him and I said to

him, Do you want to get up, dad?

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And he nodded.

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So I got him into the wheelchair,

which was not that difficult

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again, you know, from how

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Coral: For needing two

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Michelle: been.

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And yeah,

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Coral: Yeah.

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Mmm.

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Michelle: into the lounge room

and put the TV on and it was

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cricket on because it was summer.

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And as we've told you, Dad loved sport.

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So there we were sitting in front

of the TV, watching the cricket.

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I couldn't believe it.

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I actually took a selfie with

dad and sent it to you, Coral,

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saying, look, who's out of bed.

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And dad sat there so

happily and I watched him.

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He was fishing.

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Sounds strange, right?

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No!

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One of the biggest loves

in Dad's life was fishing.

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And I watched him.

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His movements were exactly what he'd

do once he had a line in the water.

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One finger extended with the

line over it so he could feel

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if a fish nibbled at the bait.

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And he kept looking over the side of his

wheelchair as if looking into the water.

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And I felt so much joy

because I knew he was happy.

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Coral: Over the course of those last

few weeks, Dad listened to a lot of his

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favourite music and he watched a couple

of his favourite movies on the DVD, Shell.

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Mmm.

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He'd always enjoyed music and

even in his last weeks, though he

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couldn't speak, he'd tap his hand

or foot in time with the music.

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And he was very emotional,

you know, with the music.

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he'd always been like that.

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And we would sit with him and

listen to the music over and over

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again and watch the same movies

for like the 50th time or more.

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But it was such a special time.

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Though his dementia was so advanced,

he still had that emotional connection

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to music, which was incredibly

comforting for him as well as us.

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Michelle: yeah.

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And I'd only been in Cairns for 24

hours and it was obvious Dad was

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fading away from life more and more.

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So it was the 5th of January,

:

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at Mum and Dad's place as usual.

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Just after 10 p.

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m.

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You and Sandy decided to go home.

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Coral: That's right, Shell.

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We were very much aware that

Dad could pass at any time.

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But we both decided to go home

as you were there with Mum.

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So Sandy and I left Mum

and Dad's place at 10.

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20pm.

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And I was literally just moments

from their place when Sandy rang

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me on the speakerphone in the car

and asked me if I'd heard anything.

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And it was uncanny because I just had

this feeling that Dad had left us.

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I looked at the clock in

the car and it was 10.

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22pm.

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Now this was all happening

within split seconds.

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And I remember just

knowing that Dad was gone.

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So Sandy and I had the same

feeling at the same time.

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And Which was the time that

Dad took his last breath.

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And then you called me, Shell,

and told me that Dad was gone.

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So Sandy and I both turned

our cars around and came back.

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Michelle: Yeah.

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You were spot on.

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Mum was really struggling, this night,

you know, before this had happened because

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Dad's breathing was so laboured, and

she said she just couldn't handle it.

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And Mum had been an absolute rock

for Dad, and I knew that this

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was the part that would hurt her.

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You know, her husband of

50 plus years passing away.

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I told her I would stay with

Dad and she should go and get

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some sleep in the spare room.

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The house was quiet and I sat next

to Dad and I said, It's okay, Dad.

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I'm with you.

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You don't have to fight anymore.

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His breathing settled right down,

and then after only a couple of

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minutes, he took his last breath.

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I watched him briefly, to be sure,

and I knew that he had passed

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:

because his face was so serene.

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:

I went and got Mum, and she

noticed exactly the same thing.

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:

We sat together and

waited for you and Sandy.

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:

Coral: I believe that Dad chose

his moment to leave us, Shell.

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:

Michelle: Absolutely.

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:

Absolutely.

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:

And we'd said our farewells to

dad while he was still with us.

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:

So we all sat together on the bed

opposite dad and celebrated his life.

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:

We poured a glass of Bailey's

each and toasted to dad.

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:

And we laughed and cried some more,

and this was our send off to Dad.

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:

Coral: And this is why we're

speaking about Dad's death, Shell.

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:

So that people understand there's no right

or wrong way to approach end of life.

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:

That what you choose to do, how

you choose to support a loved one

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:

as they're dying, is your choice.

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:

And whatever you choose to do is okay.

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:

It really is okay.

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:

Michelle: Listeners, thank you

for being here with us today.

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:

We realise this episode is a heavy one,

but we want you to be aware that while

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:

the weeks that were Dad's end of life

were difficult, there were plenty of

359

:

beautiful moments, and times where the

weight of the situation made us laugh too.

360

:

And that's okay.

361

:

We couldn't have managed what

we did without a very special

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:

person, Dad's carer, Kath, who we

mentioned during our discussion.

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:

In recognition of Kath's support for

us, we dedicate this episode to her.

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:

Thank you, Catherine Bertrand.

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:

So, concluding the story of our

dad, his dementia, His hospital

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:

admissions and discharges home

and how we cared for him at home.

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:

We move into the episodes

dedicated to dementia next week.

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:

Our guest next week is Dr.

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:

Kylus Roberts, who begins our

discussions with professionals

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:

who work in the dementia space.

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:

This is where we begin talking about

the dementia topics you've asked for.

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:

We look forward to you joining

us for our next episode.

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:

Until next week, take care.

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