June 9, 2025 • 31 mins
Jenny started grieving well before her husband passed away.
After Noel was diagnosed with dementia, Jenny knew their life together would never be the same. But the grief she felt about that gave her strength and purpose too...
Grief will be a major part of your journey if you’re caring for someone living with dementia. You might grieve the relationship you had before their diagnosis and you might be grieving after the person you cared for has passed away. It’s a natural part of the process and it’s painful, but there are strategies that can help you manage.
Jenny shares what helped her through and Mara, a Dementia Australia counsellor, shares how she helps carers through tough times.
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Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald. For support, you can contact the National Dementia Helpline on 1800 100 500 (24 hours a day, seven days a week). The National Dementia Helpline is funded by the Australian Government.
Follow Dementia Australia on Facebook and Instagram or find support resources on our website.
This episode was produced by Gia Moylan and Liam Riordan, with sound design by Ryan Pemberton. The executive producers are Gia Moylan and Kellie Riordan. Production manager is Ann Chesterman.
Dementia Australia and Deadset Studios acknowledge the Traditional Owners of Country throughout Australia and recognise their continuing connection to lands, waters and communities. We pay our respect to their Elders past and present, and extend that respect to all Aboriginal and Torres Strait Islander peoples today.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
- Hello, my name is Kevin.
I am a First Nations advocatewith Dementia Australia.
For more than 50,000 years,we have come together
to trade knowledge, tolearn, and to teach.
Today, we joined tokeep up that tradition.
So with that in mind,we now pay our respects
to the traditional owners, to Elders past
and present, to those First Nations people
(00:22):
joining us here today.
[Music]
- My husband was, Noel Hackett.
Noel was a Priest. I wasa Good Samaritan Sister.
- This is Jenny. Shecared for her husband, Noel
(00:43):
after his diagnosis ofYounger Onset Alzheimer's
at 58 years old.
- I made 'final vows', ayear after meeting Noel.
We didn't imagine our lives
taking the direction that they did.
Noel said, to me, one night,
(01:04):
"Everyone has something intheir lives to contend with."
"This is ours".
- Jenny and her husband Noelexperienced grief in
different ways, duringhis dementia journey.
And now, since Noel's passing,
Jenny is managing a differenttype of grief altogether.
[Music]
(01:28):
[Music]
- Good day. I'm Hamish Macdonald.
- And I'm Jim Rogers.
I'm living with Younger Onset Alzheimer's.
- This is Hold the Moment, apodcast from Dementia Australia.
By people living withdementia and their families.
Grief is a part of every carer's story.
(01:50):
But, it looks different for everyone.
So it can be hard to know what to do
with grief, if anything.
- You lost your Dad recently Hamish.
What did your stages of grief look like
both during the time you were caring
for him, and then when he died?
- Pretty different, to be honest Jim.
I think I found theperiod before he died much
(02:11):
more stressful, than what it was
when he actually died.
I think by the end of it,
I think most of us felta fair degree of relief.
If I'm really honest.I didn't cry.
Just kind of felt fairly peaceful
that he'd finally said goodbye to it all.
He was so unhappy towards the end.
But I think, the stuffthat we all dealt with
as a family, while he was still alive,
(02:33):
I wouldn't have thought of it as grief.
It's only through doingthis season of the podcast
that I've started tounderstand that, maybe some
of those feelings, those darkfeelings, difficult days,
angry days, were actuallywhat grief looks like.
And Jim, there's anotherpart of your dementia story,
which you haven't reallyshared with us before.
You've told me a little bit about it.
(02:53):
But actually, your Mum'sbeen living with dementia
and she died a few weeks ago.
- Yeah, and I felt muchthe same as you, Hamish.
It was, so sad and so sad to see somebody
that's going through that,that end of their life.
But, it was a sense of reliefthat she's at peace now.
So, it was a sad ending.
(03:14):
But, it happens to everybody.
- What's it been like foryou seeing your mum living
with dementia, knowing
that you are also living with dementia?
She was obviously more advanced.
She was much older in age as well.
- Yeah, it was quite confronting to see
what actually happensin those final stages.
And, to be fair, my sisterhas been the main carer.
(03:35):
And she has shoulderedthe brunt of most of it.
But, it was still very sad to see somebody
so strong and so motivated.
Sort of slowly drift away intosuch a fragile person.
So it, it was quite sad, really.
But I'm just so happy she'swith my dad now, and at peace.
(03:55):
- How you doing?
- Yeah, I'm good. It'sgood to see you. (chuckles)
- Well, on that note, a greatfirst step for carers
is to try to understandgrief a little bit better.
Before you hear more of Jenny's story.
Let's meet Mera, a counsellorfrom Dementia Australia.
She's spoken to hundreds
of carers about theirgrief and how to manage it.
(04:19):
- Conversations withcarers don't normally start
specifically with naming the grief.
Because, often people don'trealise that they're grieving.
So, carers come to counselling
for all different kinds of reasons.
It can be that they'restruggling with emotions.
They might be confused.
They might be worried about the future.
(04:41):
It's often, in getting to knowsomeone and talking with them
and exploring their storywhere it may become evident
that a lot of what they'regoing through actually is part
of their grief process.
- So how might grief presentin the life of a carer?
- Well, I often talk in terms
of grief showing up in disguise.
(05:02):
And I call it that because people
often think grief is just sadness.
But grief can be so manydifferent types of emotions.
Grief really is just the process
by which humans get used to change.
And when things change,we have emotions about it,
we have thoughts about it.
And, these can range from confusion.
(05:23):
It can be loneliness,people might be angry.
They may have a lot of questions.
They might stay really busy.
They might have 'to-do' lists.
They might go above
and beyond doing a lotfor their loved one,
that might be a grief expression.
It can show up in our bodies.
So, people might feelmore tired than usual.
They may feel heavy.
(05:45):
And, it can also show up inthe types of thoughts we have.
So carers may have perhapsquestions about the future
and thoughts like,
"What's going to happen"?
"What is this going to be like"?
"How are we going to manage"?"What's going to be our future"?
- What can carers understandabout the person they love
living with dementia?
Are they grieving too?
(06:06):
- Absolutely, yes.
And I think that that oftengets discounted and missed.
It can be, I guess, a formof disenfranchised grief
for the person living with dementia.
Because, we don't recognisethat they're grieving too.
We grieve the loss ofthings that are valuable
and important to us,
and that includes ourperception of who we are.
(06:27):
Our identity, who we thought we were.
How we thought our future was going to go.
So, a person living with dementia,
all of those things getcalled into question.
And, the person will themselves also go
through a grief experience as they start
to change with the condition.
- So grief is more complex thanjust a feeling you have when
somebody passes away.
(06:48):
So, what is "ambiguous loss"?
- When we refer to ambiguous loss,
It's a particular type of loss.
Where, "What's changed"?,"What's different"?
What we feel we've lost,is, hard to define.
It's not quite clear.
We don't really know how to describe it.
There's an ambiguity to it.
And, it often shows up in thecounselling room when someone
(07:12):
will say to me, "She's mum, but not mum".
There's so many thingsthat are quite different.
When we talk aboutanticipatory loss, this,
I kind of refer to,as grieving in advance.
We start to respond to aloss that we think is going
to happen in the future.
When I do counselling forpeople with dementia,
(07:32):
it'll often be, that they are
worried abouta time when they might not
remember their friendsand family.
With carers, the anticipation of
"What are we going to do in the future?"
"How am I going to keepcaring for my loved one?"
"What decisions are we going to make?"
"What's going to happen to our family?"
"What's our life going to look like?"
(07:52):
So, people are kind of scanning ahead.
And it's, it's a formof preparation, as well.
Like humans are designed to think about
what threats are coming in the future.
So that I can get ready for them now.
So it really does serve, like a,
coping mechanism purpose.
I might gently remindpeople that a lot of, a lot of
(08:15):
things we anticipatemight happen in dementia are
actually informed by fear-based cultural
narratives, of what weare told Dementia is like.
So people are respondingto stories they've heard
or things they've seen, books, movies.
So the way that it getsrepresented in culture, starts
to influence that anticipatory loss.
(08:37):
So, I try to remind people that,
that might not happen.
- That's just so true.
Everything you say, resonatesso clearly with me, you know.
From, from the experiencethat we've been through.
So, why is it helpful for carers to name
or acknowledge thatgrief might be something
that they are feeling?
(08:58):
- I think that when we startto notice and name our emotions
and our experiences
and the challenges thatwe're going through;
It does become easier to cope with them.
Emotions want to be acknowledged.
They don't want to be ignored.They want to be validated.
They want to be seen.
If carers aren't aware oftheir grief experience,
(09:18):
what I notice is that theytend to criticise themselves
because they don't understandthat what they're going
through is grief.
And, what I hear a lot in thecounselling room is people
saying a lot of "should" statements.
"I should be more patient." (Yeah)
"I should be morekind and understanding."
And so if people don'trecognise that they're grieving
(09:39):
and they don't turn towards that grief
and acknowledge it, then the experience
of being a carer is one of
constantly feeling likeyou are not good enough as a carer.
As soon as westart to acknowledge emotions,
it is opening the door tothis process of being able to
ask them questions about
what they say about what I might need.
If I'm, if I'm acknowledgingthat I'm angry, what does
(10:01):
that say about what thissituation means to me?
And what does that sayabout what I might need?
So, it helps with coping.
And, because dementia is anongoing, continually changing,
evolving condition, it's aprolonged grief experience.
So, if we don't turn towards our grief
and started acknowledging it,we may be spending many, many,
(10:24):
many years, not supportingourselves in a way
that might actually make the experience,
I don't want to say easier,
But it might ease some of the pain.
[Music]
- There's often a lot offocus on the person living
with dementia, but what's the benefit
of counselling for carers, specifically?
(10:47):
- Some of the biggest feedbackI get is,
how meaningful it is
to just have a space to be free.
People say, I don't haveanyone to tell these things to.
Yes, I have friends.
Yes, I have family, but Ican't tell them these things.
People often, they want to fix things
or they can't sit with that pain
and just let it exist freely.
(11:09):
And I think for carers,it's often just the process
of being heard, being acknowledged
that can be quite powerful.
And alleviating isolation,normalising what they're going
through, those can be very therapeutically
beneficial to people.
- I think that's key,is, is being heard. (Mmm)
Just being allowed tobe listened to. (Mmhmm)
(11:31):
- That's the thing withcounselling, that is so helpful.
- Yeah, it's actually quite magical.
It's this weird magic thingthat happens where just
by saying something out loud clearly
and being encouraged toreally articulate it fully.
Being asked questions about it.
Being acknowledged, oftenis enough for people.
- So once you've actuallyacknowledged your grief,
(11:53):
it must be quite freeing.
- When you turn towards your grief,
and you start to acknowledge it,
you start to make room for it.
It opens up the possibility
of having a different relationship
with the experience thatyou're going through.
So, there's an opportunityto be more kind to yourself.
To stop berating and judging yourself.
(12:16):
To validate what you're going through
as very real, very normal.
And giving yourself permissionto feel those feelings
and not feel guilty orshameful about them.
Because this is your experience.
This is your story, this is how you are
navigating dementia and being a carer.
And all of that is very valid.
(12:37):
[Music]
[Music]
- That was Mera, one of the counsellors
from Dementia Australia.
Hamish, did you everseek counselling while
you were caring for your dad?
- I did get a bit of counselling,
but not specifically to do with dad.
(12:58):
I guess I reflect on it all, asa pretty difficult time.
More so to do with work and family.
But, I think in retrospect, a lot
of the pressures were, associated with dad
and what he was going through.
I think for me, a big part
of actually, the learning in this series.
Is how much of it's interconnected.
I don't think I was reallyclocking it as I was living
(13:20):
through all of that time.
I did get help, definitely, I needed help.
But, yeah, I wouldn'tnecessarily have said it was
specifically related todad's dementia journey
or grief or anything like that.
It's only now that I'm startingto probably register that.
How about in your family? IsTyler, your husband, done any
counselling, or your kids?
(13:40):
- Well, I did. I'm prettyresistant to counselling.
- Stubborn, I think is theterm they'd use, right?
- Yes, that's true.
But, eventually I felt asthough it could be useful.
And I have had aboutsix counselling sessions
through Dementia Australia,which I absolutely have enjoyed.
Towards the end of them, I've got
(14:01):
to know a really greatlady who's been helping me.
But, the kids have alsoleaned on counsellors.
I know they've had sometherapy for various things.
And I think, my diagnosisadded into that a little bit.
So they've worked their way through it.
But Tyler is totally resistant to it.
And very strong-lined,in-independent to not need it.
(14:22):
In fact, it was somethingwe discussed only this week
that I said, "Somebody mentioned to me
that it could be a good outlet for you."
So, who knows, watch this space.
- Maybe Tyler's listening to this episode.
- I'm sure he'd be listening. (chuckling)
If you advise it Hayne, he'll take it up.
- Dementia Australia actuallyoffers a range of services
to carers of people living with dementia.
So, if you feel like youcould use some support,
(14:44):
visit the Dementia Australia website
or call the National DementiaHelpline on 1800 100 500.
They offered these services
to me right throughout thejourney that my dad went through.
And to be honest, I ignoreda lot of the suggestions.
So, take it from me. It'snever too soon. Give it a go.
[Music]
(15:06):
[Music]
Okay, Jim, let's headback to Jenny's story.
Who we heard from at thestart of this episode.
She was telling us abouthow she and her husband met.
And why their romance was prettyunlikely in the beginning.
- My husband, it was Noel Hackett.
And, we met in Brisbane.
(15:27):
Through a, mutual friend.
- And when was this?- Oh, late January, 1980.
- And, so you ultimately married in 1993.
That's a big gap.
- Yes. Well, we bothgot on with our lives.
Noel was a Priest, and Iwas a Good Samaritan Sister.
(15:48):
And I made 'final vows' a year
after meeting Noel.
So, we didn't imagine our lives
taking the direction that they did.
But, it was such a struggle.
It was such a struggle for both of us.
You make a commitment.
We both made a commitmentthat we thought was for life.
(16:09):
Well, for me, like a, a'calling' to something more.
And that 'calling' remainswith me to this day.
And, but it gets manifestedin different ways.
And so, yeah, it was just astruggle to come to terms with
"Are we willing to let go"?
Both of us individually,
of that commitment, and the ministry.
(16:31):
That, the freedom that comes
with having a life-free,to be in ministry.
It's complex.
- When Noel was diagnosed with dementia,
did you have then, or didhe have a sense of grief?
(16:53):
- Noel's mum had dementiaand it's in her family.
So yes, he was very, very distressed.
Like crying uncontrollably.
So, I guess that's a form of grief.
I think there's a lot of shock.
Not denial from either of us.
(17:14):
Both kind of knew, but,just sadness really.
- Did you identify it
or acknowledge it as grief at that moment?
Or did you see it as other things?
- No, just the profound sadness.
And another thing I, I kindof don't think of grief.
I think about grieving and it'ssort of like it's happening.
(17:38):
But it's only, like you live forward.
But, upon reflection, it's,yes, we were grieving.
But we wouldn't have named it as that.
- So I know there was a bit of a gap
between when Noel was initially observed
by his GP and told, youmight have dementia.
(17:59):
And then, a couple of years later,
a formal diagnosis of dementia.
I'm wondering if during thattime, you talked much about
how he wanted to approach it
or how you wanted to approach it together?
- It was during that time, thatNoel said to me one night,
"Everyone has something intheir lives to contend with".
(18:20):
"This is ours".
(Exacerbation sigh)
"This is ours, and we'llmanage it with grace."
And I just remember at thatmoment thinking, "Oh, my God",
I have to really step up.
I have to step up to,
live, as Noel's choosing to live.
(18:42):
I think I have.
But that set the, the tone
and the groundwork for thefoundation, for our lives
for the next, I suppose, 15, 15
and a half years, however early it was.
- What did, what did 'grace' mean
(19:04):
to you when he said that?
That he wanted you bothto, to do this with grace?
- It's like a gift.
It's a graciousness.
And accepting and embracing of what is.
And not fighting against it.Not being bitter and twisted.
(19:30):
- Was that easy to do?
- Well, that's whatNoel said we were doing.
So, that's what we were doing. (chuckling)
And if that sounds like he's the monster
and he says what we're doing.
It wasn't at all likethat. No, not at all.
That's what I wanted to do.
I've always been inspired by people
who have faced massive difficulties
(19:52):
and have shone through.
It's, it's like beinga lifelong fascination
for the little girl, andthe, a lifelong, things.
So, here was my calling to this now.
This was our moment, to step up.
[Music]
(20:14):
- I feel like that's part of the answer.
Because you're talking aboutadversity and challenge,
and it's obvious anyone living
with dementia, goes through a lot.
So, I'm just interested asthe person doing the caring,
in whether it was challenging at times to,
to live up to that?
- I was overwhelmed.
(20:36):
Often, throughout thewhole of those years.
Swamped, just overwhelmed.
And Noel was always veryaware of that and supportive.
Like, he talked about dementiaas sinking into the darkness
of dementia.
But, it was always about 'Jenny'.
"Jenny has to do this."
(20:57):
"Jenny has to do that."
"Jenny has to manage our finances."
"Jenny. Everything comes back to Jenny."
And that concerned him.
So, yes, it was difficult, very difficult.
But I always felt that I didn't want him
to feel he was a burdenbecause he thought that he was.
(21:19):
And, he didn't want to be a burden.
- Did you ever feel anger?
Because I, I mean, I, I found, you know,
with dad's situation, at various times.
I felt quite angry about things.
Not necessarily angry atdad or at the disease even.
But just, other people, and the way
they interacted with it.
And, there was a lot of frustration.
(21:41):
Did you feel any of that?
- Yes. Frustration and anger.
My anger wasn't at Godor at life or at Noel.
My anger was, "Oh, myhusband does that too".
And, "Oh look, it's, it'snot, it's not that bad". (Chuffs)
And like "He's pretty good".
But there was one place that I felt
(22:05):
safe, accepted, understood.
And that was, in ourdementia support group.
And that's where I got my understanding
and my support.
And just, being inspired.If other people can do it.
Like, if this person can doit in those circumstances.
(22:25):
Goodness, I can do this. (Yeah)
And it was just people'sstories and experiences
and relationships are so different.
And yet, (- there was a lot in common)
- I was inspired. (Yep)
- Yeah.
- You obviously had both beenon such extraordinary journeys
to get to the pointthat you were together.
(22:47):
How much of the grief thatyou felt, was associated with,
I guess, your expectation ofwhat you might have the life
that you wanted to have, together?
- Yeah, we talked in thegroup about different kinds
of grief, and I thinkthat's 'anticipatory grief'.
But, Noel and I starting in the late
(23:09):
thirties for me, forties for him.
Early forties, with nothing.Like nothing.
We didn't have dreams ofspending our lives tripping
around the world.
For us, it was justabout being together.
And, so that was never taken away.
Because, despite being discouraged
(23:31):
for spending so much time with Noel.
I continued to do that.
That's what we wantedto do, just be together.
[Music]
[Music]
So, at one stage, one ofNoel's nephews came down
with his wife.
(23:52):
And, Rory wanted Isabella,
his new wife, to meet Noel.
And, so they came and we went upstairs.
And, I kept saying to Noel,"Noel, Rory's married now."
And I'd used the word 'married'quite a number of times
and we had a cuppa with them
and wandered around thecourtyard, which was our routine.
(24:13):
And, anyway, Noel eventuallygave her the, the smile
and the nod, 'She was in'.
And that was very precious in itself.
And, we went downstairs
and I was in the bathroom.
Entertaining himself in the mirror so
obviously he was feelingpretty happy. (chuckles)
And I went in, and I putmy head on his shoulder and I
(24:33):
and I said, looking in the mirror,
"I'm your beautiful wife". (Echos)
And he put his head on myhead and said, "Married".
So, it meant, in that one word, it meant
that he'd understood themorning that we'd had.
He understood who I wasand our relationship.
(24:57):
Like he didn't say myname, Jenny or Jen-Jen.
He, he hadn't said that for a long time.
But that moment, was everything.
And, we kept on having little
'Hold the Moment' moments.
That, were nourishingand life-giving for me.
(25:24):
And I think for him too.
Because he was able tocommunicate at a real level
with me, and then it was gone.
- And it's that story.
And, and you, thatactually inspired the name
of this series, isn't it? (Yeah)
- Yes, yes.
- Hold the moment.- Hold the moment. Yeah.
And there were lots of them,
but we have to be open to them, of course.
(25:45):
So often things would happen,
and I'd think "Did that really happen?".
And, why would I doubt? It happened.
[Music]
[Music]
In May, '23
Noel kept crying, a lot.
(26:06):
And whenever in a quiet spottogether, in the wheelchair,
I'd be wheeling, he would be upset.
And, I said to him,
Noel, "What's the matter?"
"Are you, are you sad?"
And he looked at melike, "Are you kidding me?"
(26:28):
He didn't say that, but thelook on his face. Like,
"The hell, what do you think?"
"Oh, Noel, sorry, sorry."
"Yes. You're sad. Oh, it's asilly question, I'm sorry."
And anyway, we went for another walk.
Like, "What a stupidthing to say, on my part."
So, another quiet spot, crying.
So eventually, another quiet spot.I knelt down beside him
(26:50):
and I said, "Noel, I promise
to live a full andhappy life when you die."
And he reached overand pulled me into him,
and sobbed. And so did I.
(27:11):
And then he was happy after that.
It was just extraordinary.
- And are you living afull and happy life now?
- I am. I was a bit, imagine, imagine, bit
unhinged I suppose. Not untethered.
Because my life revolvedaround being with Noel daily.
(27:31):
And then that's, that's not happening.
So, I was asked this question.
"What is it that you are refusing to,
accept?"
And it was joy.
I'd been content in our years together,
(27:51):
but there wasn't a lotof happiness anymore.
A lot of happy, but no joy.There was very little joy.
And, the poignant momentswere poignant and beautiful
and sacred precious, but not joyous.
And then, I had this suddenrealisation, I have made
a promise, and it's a solemn promise.
(28:13):
It's like a, it's like a vow that I made.
So, I have a responsibility to live up
to that, that I've made to Noel.
And I have to do that.
- To find joy?
- To find joy, and well, to live a full,
and happy life, means to have joy.
And, I had to rediscover how to do that.
(28:36):
Like a lot of ordinary things.
I wasn't able to manage.
Like going to new places.
Just lots of things that are so ordinary
that I don't tell people that"I actually can't do that".
Because I don't know how to anymore.I have to relearn.
(28:58):
But, I am experiencing, beginning
to experience, joy now and after,
or during that time.
Mary Oliver's poem, 'The Summer's Day'.
The last line, she says,
(Echoing) "Tell me, what isit, you plan to do with your
(29:20):
one, wild and precious life?"
And, well my life is wild
and precious, so it's a matter of
what I'm going to do with it.
And I have a commitmentstill to Noel, to live it.
To live it with joy.
- Jenny, thank you very much.
- Pleasure.
[Music]
(29:44):
[Music]
[Music]
Thanks so much to Jenny for sharing her
and Noel's story with us.
And thanks to Mera for her insight at the
start of this episode.
- Hamish, Mera is amazing.
And so knowledgeable,having worked with hundreds
(30:05):
of carers in her role as a counsellor.
If you are struggling with grief yourself,
you should definitely go andlisten to our bonus episode.
You'll hear from Kristenwho works on
Dementia Australia's Helpline.
- Kristen offers somereally simple actionable
tips for managing grief.
And if you want to go even deeper,
you can call the helpline yourself.
It's available 24/7 Every day of the year.
(30:27):
- The number is 1800 100 500.
[Music]
Hold the Moment is a podcastfrom Dementia Australia.
Produced by Deadset Studios.
You can find more episodes
and resources on DementiaAustralia's website
(30:47):
dementia.org.au.
The show is hosted by me, Jim Rogers.
- And by me, Hamish Macdonald.
The executive producers areKellie Riordan and Gia Moylan.
The producers are Madeleine Hawcroft
and Liam Riordan.
Production Manager is Ann Chesterman.
Sound designed by Ryan Pemberton.
A special thanks to the wholeteam at Dementia Australia
(31:09):
and to everyone who sharedtheir stories on this podcast.
[Music]
[Music]
[Music fades]
- Hello, my name is Kevin.
I am a First Nations advocatewith Dementia Australia.
For more than 50,000 years,we have come together
to trade knowledge, tolearn, and to teach.
Today, we joined tokeep up that tradition.
So with that in mind,we now pay our respects
to the traditional owners, to Elders past
and present, to those First Nations people
(00:22):
joining us here today.
[Music]
- My husband was, Noel Hackett.
Noel was a Priest. I wasa Good Samaritan Sister.
- This is Jenny. Shecared for her husband, Noel
(00:43):
after his diagnosis ofYounger Onset Alzheimer's
at 58 years old.
- I made 'final vows', ayear after meeting Noel.
We didn't imagine our lives
taking the direction that they did.
Noel said, to me, one night,
(01:04):
"Everyone has something intheir lives to contend with."
"This is ours".
- Jenny and her husband Noelexperienced grief in
different ways, duringhis dementia journey.
And now, since Noel's passing,
Jenny is managing a differenttype of grief altogether.
[Music]
(01:28):
[Music]
- Good day. I'm Hamish Macdonald.
- And I'm Jim Rogers.
I'm living with Younger Onset Alzheimer's.
- This is Hold the Moment, apodcast from Dementia Australia.
By people living withdementia and their families.
Grief is a part of every carer's story.
(01:50):
But, it looks different for everyone.
So it can be hard to know what to do
with grief, if anything.
- You lost your Dad recently Hamish.
What did your stages of grief look like
both during the time you were caring
for him, and then when he died?
- Pretty different, to be honest Jim.
I think I found theperiod before he died much
(02:11):
more stressful, than what it was
when he actually died.
I think by the end of it,
I think most of us felta fair degree of relief.
If I'm really honest.I didn't cry.
Just kind of felt fairly peaceful
that he'd finally said goodbye to it all.
He was so unhappy towards the end.
But I think, the stuffthat we all dealt with
as a family, while he was still alive,
(02:33):
I wouldn't have thought of it as grief.
It's only through doingthis season of the podcast
that I've started tounderstand that, maybe some
of those feelings, those darkfeelings, difficult days,
angry days, were actuallywhat grief looks like.
And Jim, there's anotherpart of your dementia story,
which you haven't reallyshared with us before.
You've told me a little bit about it.
(02:53):
But actually, your Mum'sbeen living with dementia
and she died a few weeks ago.
- Yeah, and I felt muchthe same as you, Hamish.
It was, so sad and so sad to see somebody
that's going through that,that end of their life.
But, it was a sense of reliefthat she's at peace now.
So, it was a sad ending.
(03:14):
But, it happens to everybody.
- What's it been like foryou seeing your mum living
with dementia, knowing
that you are also living with dementia?
She was obviously more advanced.
She was much older in age as well.
- Yeah, it was quite confronting to see
what actually happensin those final stages.
And, to be fair, my sisterhas been the main carer.
(03:35):
And she has shoulderedthe brunt of most of it.
But, it was still very sad to see somebody
so strong and so motivated.
Sort of slowly drift away intosuch a fragile person.
So it, it was quite sad, really.
But I'm just so happy she'swith my dad now, and at peace.
(03:55):
- How you doing?
- Yeah, I'm good. It'sgood to see you. (chuckles)
- Well, on that note, a greatfirst step for carers
is to try to understandgrief a little bit better.
Before you hear more of Jenny's story.
Let's meet Mera, a counsellorfrom Dementia Australia.
She's spoken to hundreds
of carers about theirgrief and how to manage it.
(04:19):
- Conversations withcarers don't normally start
specifically with naming the grief.
Because, often people don'trealise that they're grieving.
So, carers come to counselling
for all different kinds of reasons.
It can be that they'restruggling with emotions.
They might be confused.
They might be worried about the future.
(04:41):
It's often, in getting to knowsomeone and talking with them
and exploring their storywhere it may become evident
that a lot of what they'regoing through actually is part
of their grief process.
- So how might grief presentin the life of a carer?
- Well, I often talk in terms
of grief showing up in disguise.
(05:02):
And I call it that because people
often think grief is just sadness.
But grief can be so manydifferent types of emotions.
Grief really is just the process
by which humans get used to change.
And when things change,we have emotions about it,
we have thoughts about it.
And, these can range from confusion.
(05:23):
It can be loneliness,people might be angry.
They may have a lot of questions.
They might stay really busy.
They might have 'to-do' lists.
They might go above
and beyond doing a lotfor their loved one,
that might be a grief expression.
It can show up in our bodies.
So, people might feelmore tired than usual.
They may feel heavy.
(05:45):
And, it can also show up inthe types of thoughts we have.
So carers may have perhapsquestions about the future
and thoughts like,
"What's going to happen"?
"What is this going to be like"?
"How are we going to manage"?"What's going to be our future"?
- What can carers understandabout the person they love
living with dementia?
Are they grieving too?
(06:06):
- Absolutely, yes.
And I think that that oftengets discounted and missed.
It can be, I guess, a formof disenfranchised grief
for the person living with dementia.
Because, we don't recognisethat they're grieving too.
We grieve the loss ofthings that are valuable
and important to us,
and that includes ourperception of who we are.
(06:27):
Our identity, who we thought we were.
How we thought our future was going to go.
So, a person living with dementia,
all of those things getcalled into question.
And, the person will themselves also go
through a grief experience as they start
to change with the condition.
- So grief is more complex thanjust a feeling you have when
somebody passes away.
(06:48):
So, what is "ambiguous loss"?
- When we refer to ambiguous loss,
It's a particular type of loss.
Where, "What's changed"?,"What's different"?
What we feel we've lost,is, hard to define.
It's not quite clear.
We don't really know how to describe it.
There's an ambiguity to it.
And, it often shows up in thecounselling room when someone
(07:12):
will say to me, "She's mum, but not mum".
There's so many thingsthat are quite different.
When we talk aboutanticipatory loss, this,
I kind of refer to,as grieving in advance.
We start to respond to aloss that we think is going
to happen in the future.
When I do counselling forpeople with dementia,
(07:32):
it'll often be, that they are
worried abouta time when they might not
remember their friendsand family.
With carers, the anticipation of
"What are we going to do in the future?"
"How am I going to keepcaring for my loved one?"
"What decisions are we going to make?"
"What's going to happen to our family?"
"What's our life going to look like?"
(07:52):
So, people are kind of scanning ahead.
And it's, it's a formof preparation, as well.
Like humans are designed to think about
what threats are coming in the future.
So that I can get ready for them now.
So it really does serve, like a,
coping mechanism purpose.
I might gently remindpeople that a lot of, a lot of
(08:15):
things we anticipatemight happen in dementia are
actually informed by fear-based cultural
narratives, of what weare told Dementia is like.
So people are respondingto stories they've heard
or things they've seen, books, movies.
So the way that it getsrepresented in culture, starts
to influence that anticipatory loss.
(08:37):
So, I try to remind people that,
that might not happen.
- That's just so true.
Everything you say, resonatesso clearly with me, you know.
From, from the experiencethat we've been through.
So, why is it helpful for carers to name
or acknowledge thatgrief might be something
that they are feeling?
(08:58):
- I think that when we startto notice and name our emotions
and our experiences
and the challenges thatwe're going through;
It does become easier to cope with them.
Emotions want to be acknowledged.
They don't want to be ignored.They want to be validated.
They want to be seen.
If carers aren't aware oftheir grief experience,
(09:18):
what I notice is that theytend to criticise themselves
because they don't understandthat what they're going
through is grief.
And, what I hear a lot in thecounselling room is people
saying a lot of "should" statements.
"I should be more patient." (Yeah)
"I should be morekind and understanding."
And so if people don'trecognise that they're grieving
(09:39):
and they don't turn towards that grief
and acknowledge it, then the experience
of being a carer is one of
constantly feeling likeyou are not good enough as a carer.
As soon as westart to acknowledge emotions,
it is opening the door tothis process of being able to
ask them questions about
what they say about what I might need.
If I'm, if I'm acknowledgingthat I'm angry, what does
(10:01):
that say about what thissituation means to me?
And what does that sayabout what I might need?
So, it helps with coping.
And, because dementia is anongoing, continually changing,
evolving condition, it's aprolonged grief experience.
So, if we don't turn towards our grief
and started acknowledging it,we may be spending many, many,
(10:24):
many years, not supportingourselves in a way
that might actually make the experience,
I don't want to say easier,
But it might ease some of the pain.
[Music]
- There's often a lot offocus on the person living
with dementia, but what's the benefit
of counselling for carers, specifically?
(10:47):
- Some of the biggest feedbackI get is,
how meaningful it is
to just have a space to be free.
People say, I don't haveanyone to tell these things to.
Yes, I have friends.
Yes, I have family, but Ican't tell them these things.
People often, they want to fix things
or they can't sit with that pain
and just let it exist freely.
(11:09):
And I think for carers,it's often just the process
of being heard, being acknowledged
that can be quite powerful.
And alleviating isolation,normalising what they're going
through, those can be very therapeutically
beneficial to people.
- I think that's key,is, is being heard. (Mmm)
Just being allowed tobe listened to. (Mmhmm)
(11:31):
- That's the thing withcounselling, that is so helpful.
- Yeah, it's actually quite magical.
It's this weird magic thingthat happens where just
by saying something out loud clearly
and being encouraged toreally articulate it fully.
Being asked questions about it.
Being acknowledged, oftenis enough for people.
- So once you've actuallyacknowledged your grief,
(11:53):
it must be quite freeing.
- When you turn towards your grief,
and you start to acknowledge it,
you start to make room for it.
It opens up the possibility
of having a different relationship
with the experience thatyou're going through.
So, there's an opportunityto be more kind to yourself.
To stop berating and judging yourself.
(12:16):
To validate what you're going through
as very real, very normal.
And giving yourself permissionto feel those feelings
and not feel guilty orshameful about them.
Because this is your experience.
This is your story, this is how you are
navigating dementia and being a carer.
And all of that is very valid.
(12:37):
[Music]
[Music]
- That was Mera, one of the counsellors
from Dementia Australia.
Hamish, did you everseek counselling while
you were caring for your dad?
- I did get a bit of counselling,
but not specifically to do with dad.
(12:58):
I guess I reflect on it all, asa pretty difficult time.
More so to do with work and family.
But, I think in retrospect, a lot
of the pressures were, associated with dad
and what he was going through.
I think for me, a big part
of actually, the learning in this series.
Is how much of it's interconnected.
I don't think I was reallyclocking it as I was living
(13:20):
through all of that time.
I did get help, definitely, I needed help.
But, yeah, I wouldn'tnecessarily have said it was
specifically related todad's dementia journey
or grief or anything like that.
It's only now that I'm startingto probably register that.
How about in your family? IsTyler, your husband, done any
counselling, or your kids?
(13:40):
- Well, I did. I'm prettyresistant to counselling.
- Stubborn, I think is theterm they'd use, right?
- Yes, that's true.
But, eventually I felt asthough it could be useful.
And I have had aboutsix counselling sessions
through Dementia Australia,which I absolutely have enjoyed.
Towards the end of them, I've got
(14:01):
to know a really greatlady who's been helping me.
But, the kids have alsoleaned on counsellors.
I know they've had sometherapy for various things.
And I think, my diagnosisadded into that a little bit.
So they've worked their way through it.
But Tyler is totally resistant to it.
And very strong-lined,in-independent to not need it.
(14:22):
In fact, it was somethingwe discussed only this week
that I said, "Somebody mentioned to me
that it could be a good outlet for you."
So, who knows, watch this space.
- Maybe Tyler's listening to this episode.
- I'm sure he'd be listening. (chuckling)
If you advise it Hayne, he'll take it up.
- Dementia Australia actuallyoffers a range of services
to carers of people living with dementia.
So, if you feel like youcould use some support,
(14:44):
visit the Dementia Australia website
or call the National DementiaHelpline on 1800 100 500.
They offered these services
to me right throughout thejourney that my dad went through.
And to be honest, I ignoreda lot of the suggestions.
So, take it from me. It'snever too soon. Give it a go.
[Music]
(15:06):
[Music]
Okay, Jim, let's headback to Jenny's story.
Who we heard from at thestart of this episode.
She was telling us abouthow she and her husband met.
And why their romance was prettyunlikely in the beginning.
- My husband, it was Noel Hackett.
And, we met in Brisbane.
(15:27):
Through a, mutual friend.
- And when was this?- Oh, late January, 1980.
- And, so you ultimately married in 1993.
That's a big gap.
- Yes. Well, we bothgot on with our lives.
Noel was a Priest, and Iwas a Good Samaritan Sister.
(15:48):
And I made 'final vows' a year
after meeting Noel.
So, we didn't imagine our lives
taking the direction that they did.
But, it was such a struggle.
It was such a struggle for both of us.
You make a commitment.
We both made a commitmentthat we thought was for life.
(16:09):
Well, for me, like a, a'calling' to something more.
And that 'calling' remainswith me to this day.
And, but it gets manifestedin different ways.
And so, yeah, it was just astruggle to come to terms with
"Are we willing to let go"?
Both of us individually,
of that commitment, and the ministry.
(16:31):
That, the freedom that comes
with having a life-free,to be in ministry.
It's complex.
- When Noel was diagnosed with dementia,
did you have then, or didhe have a sense of grief?
(16:53):
- Noel's mum had dementiaand it's in her family.
So yes, he was very, very distressed.
Like crying uncontrollably.
So, I guess that's a form of grief.
I think there's a lot of shock.
Not denial from either of us.
(17:14):
Both kind of knew, but,just sadness really.
- Did you identify it
or acknowledge it as grief at that moment?
Or did you see it as other things?
- No, just the profound sadness.
And another thing I, I kindof don't think of grief.
I think about grieving and it'ssort of like it's happening.
(17:38):
But it's only, like you live forward.
But, upon reflection, it's,yes, we were grieving.
But we wouldn't have named it as that.
- So I know there was a bit of a gap
between when Noel was initially observed
by his GP and told, youmight have dementia.
(17:59):
And then, a couple of years later,
a formal diagnosis of dementia.
I'm wondering if during thattime, you talked much about
how he wanted to approach it
or how you wanted to approach it together?
- It was during that time, thatNoel said to me one night,
"Everyone has something intheir lives to contend with".
(18:20):
"This is ours".
(Exacerbation sigh)
"This is ours, and we'llmanage it with grace."
And I just remember at thatmoment thinking, "Oh, my God",
I have to really step up.
I have to step up to,
live, as Noel's choosing to live.
(18:42):
I think I have.
But that set the, the tone
and the groundwork for thefoundation, for our lives
for the next, I suppose, 15, 15
and a half years, however early it was.
- What did, what did 'grace' mean
(19:04):
to you when he said that?
That he wanted you bothto, to do this with grace?
- It's like a gift.
It's a graciousness.
And accepting and embracing of what is.
And not fighting against it.Not being bitter and twisted.
(19:30):
- Was that easy to do?
- Well, that's whatNoel said we were doing.
So, that's what we were doing. (chuckling)
And if that sounds like he's the monster
and he says what we're doing.
It wasn't at all likethat. No, not at all.
That's what I wanted to do.
I've always been inspired by people
who have faced massive difficulties
(19:52):
and have shone through.
It's, it's like beinga lifelong fascination
for the little girl, andthe, a lifelong, things.
So, here was my calling to this now.
This was our moment, to step up.
[Music]
(20:14):
- I feel like that's part of the answer.
Because you're talking aboutadversity and challenge,
and it's obvious anyone living
with dementia, goes through a lot.
So, I'm just interested asthe person doing the caring,
in whether it was challenging at times to,
to live up to that?
- I was overwhelmed.
(20:36):
Often, throughout thewhole of those years.
Swamped, just overwhelmed.
And Noel was always veryaware of that and supportive.
Like, he talked about dementiaas sinking into the darkness
of dementia.
But, it was always about 'Jenny'.
"Jenny has to do this."
(20:57):
"Jenny has to do that."
"Jenny has to manage our finances."
"Jenny. Everything comes back to Jenny."
And that concerned him.
So, yes, it was difficult, very difficult.
But I always felt that I didn't want him
to feel he was a burdenbecause he thought that he was.
(21:19):
And, he didn't want to be a burden.
- Did you ever feel anger?
Because I, I mean, I, I found, you know,
with dad's situation, at various times.
I felt quite angry about things.
Not necessarily angry atdad or at the disease even.
But just, other people, and the way
they interacted with it.
And, there was a lot of frustration.
(21:41):
Did you feel any of that?
- Yes. Frustration and anger.
My anger wasn't at Godor at life or at Noel.
My anger was, "Oh, myhusband does that too".
And, "Oh look, it's, it'snot, it's not that bad". (Chuffs)
And like "He's pretty good".
But there was one place that I felt
(22:05):
safe, accepted, understood.
And that was, in ourdementia support group.
And that's where I got my understanding
and my support.
And just, being inspired.If other people can do it.
Like, if this person can doit in those circumstances.
(22:25):
Goodness, I can do this. (Yeah)
And it was just people'sstories and experiences
and relationships are so different.
And yet, (- there was a lot in common)
- I was inspired. (Yep)
- Yeah.
- You obviously had both beenon such extraordinary journeys
to get to the pointthat you were together.
(22:47):
How much of the grief thatyou felt, was associated with,
I guess, your expectation ofwhat you might have the life
that you wanted to have, together?
- Yeah, we talked in thegroup about different kinds
of grief, and I thinkthat's 'anticipatory grief'.
But, Noel and I starting in the late
(23:09):
thirties for me, forties for him.
Early forties, with nothing.Like nothing.
We didn't have dreams ofspending our lives tripping
around the world.
For us, it was justabout being together.
And, so that was never taken away.
Because, despite being discouraged
(23:31):
for spending so much time with Noel.
I continued to do that.
That's what we wantedto do, just be together.
[Music]
[Music]
So, at one stage, one ofNoel's nephews came down
with his wife.
(23:52):
And, Rory wanted Isabella,
his new wife, to meet Noel.
And, so they came and we went upstairs.
And, I kept saying to Noel,"Noel, Rory's married now."
And I'd used the word 'married'quite a number of times
and we had a cuppa with them
and wandered around thecourtyard, which was our routine.
(24:13):
And, anyway, Noel eventuallygave her the, the smile
and the nod, 'She was in'.
And that was very precious in itself.
And, we went downstairs
and I was in the bathroom.
Entertaining himself in the mirror so
obviously he was feelingpretty happy. (chuckles)
And I went in, and I putmy head on his shoulder and I
(24:33):
and I said, looking in the mirror,
"I'm your beautiful wife". (Echos)
And he put his head on myhead and said, "Married".
So, it meant, in that one word, it meant
that he'd understood themorning that we'd had.
He understood who I wasand our relationship.
(24:57):
Like he didn't say myname, Jenny or Jen-Jen.
He, he hadn't said that for a long time.
But that moment, was everything.
And, we kept on having little
'Hold the Moment' moments.
That, were nourishingand life-giving for me.
(25:24):
And I think for him too.
Because he was able tocommunicate at a real level
with me, and then it was gone.
- And it's that story.
And, and you, thatactually inspired the name
of this series, isn't it? (Yeah)
- Yes, yes.
- Hold the moment.- Hold the moment. Yeah.
And there were lots of them,
but we have to be open to them, of course.
(25:45):
So often things would happen,
and I'd think "Did that really happen?".
And, why would I doubt? It happened.
[Music]
[Music]
In May, '23
Noel kept crying, a lot.
(26:06):
And whenever in a quiet spottogether, in the wheelchair,
I'd be wheeling, he would be upset.
And, I said to him,
Noel, "What's the matter?"
"Are you, are you sad?"
And he looked at melike, "Are you kidding me?"
(26:28):
He didn't say that, but thelook on his face. Like,
"The hell, what do you think?"
"Oh, Noel, sorry, sorry."
"Yes. You're sad. Oh, it's asilly question, I'm sorry."
And anyway, we went for another walk.
Like, "What a stupidthing to say, on my part."
So, another quiet spot, crying.
So eventually, another quiet spot.I knelt down beside him
(26:50):
and I said, "Noel, I promise
to live a full andhappy life when you die."
And he reached overand pulled me into him,
and sobbed. And so did I.
(27:11):
And then he was happy after that.
It was just extraordinary.
- And are you living afull and happy life now?
- I am. I was a bit, imagine, imagine, bit
unhinged I suppose. Not untethered.
Because my life revolvedaround being with Noel daily.
(27:31):
And then that's, that's not happening.
So, I was asked this question.
"What is it that you are refusing to,
accept?"
And it was joy.
I'd been content in our years together,
(27:51):
but there wasn't a lotof happiness anymore.
A lot of happy, but no joy.There was very little joy.
And, the poignant momentswere poignant and beautiful
and sacred precious, but not joyous.
And then, I had this suddenrealisation, I have made
a promise, and it's a solemn promise.
(28:13):
It's like a, it's like a vow that I made.
So, I have a responsibility to live up
to that, that I've made to Noel.
And I have to do that.
- To find joy?
- To find joy, and well, to live a full,
and happy life, means to have joy.
And, I had to rediscover how to do that.
(28:36):
Like a lot of ordinary things.
I wasn't able to manage.
Like going to new places.
Just lots of things that are so ordinary
that I don't tell people that"I actually can't do that".
Because I don't know how to anymore.I have to relearn.
(28:58):
But, I am experiencing, beginning
to experience, joy now and after,
or during that time.
Mary Oliver's poem, 'The Summer's Day'.
The last line, she says,
(Echoing) "Tell me, what isit, you plan to do with your
(29:20):
one, wild and precious life?"
And, well my life is wild
and precious, so it's a matter of
what I'm going to do with it.
And I have a commitmentstill to Noel, to live it.
To live it with joy.
- Jenny, thank you very much.
- Pleasure.
[Music]
(29:44):
[Music]
[Music]
Thanks so much to Jenny for sharing her
and Noel's story with us.
And thanks to Mera for her insight at the
start of this episode.
- Hamish, Mera is amazing.
And so knowledgeable,having worked with hundreds
(30:05):
of carers in her role as a counsellor.
If you are struggling with grief yourself,
you should definitely go andlisten to our bonus episode.
You'll hear from Kristenwho works on
Dementia Australia's Helpline.
- Kristen offers somereally simple actionable
tips for managing grief.
And if you want to go even deeper,
you can call the helpline yourself.
It's available 24/7 Every day of the year.
(30:27):
- The number is 1800 100 500.
[Music]
Hold the Moment is a podcastfrom Dementia Australia.
Produced by Deadset Studios.
You can find more episodes
and resources on DementiaAustralia's website
(30:47):
dementia.org.au.
The show is hosted by me, Jim Rogers.
- And by me, Hamish Macdonald.
The executive producers areKellie Riordan and Gia Moylan.
The producers are Madeleine Hawcroft
and Liam Riordan.
Production Manager is Ann Chesterman.
Sound designed by Ryan Pemberton.
A special thanks to the wholeteam at Dementia Australia
(31:09):
and to everyone who sharedtheir stories on this podcast.
[Music]
[Music]
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On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
Ridiculous History
History is beautiful, brutal and, often, ridiculous. Join Ben Bowlin and Noel Brown as they dive into some of the weirdest stories from across the span of human civilization in Ridiculous History, a podcast by iHeartRadio.