September 26, 2025 • 55 mins
When a loved one experiences dementia, grief does not wait for a tidy ending. Francesca and Louise sit down with resilience researcher and grief expert Dr Lucy Hone to talk about living loss and how to cope when someone you love is in ongoing cognitive decline. Later in the episode Helen Frank from Alzheimer’s Taranaki shares clear guidance on early signs, getting a diagnosis,and the support available for carers.
'How Will I Ever Get Through This?' - pre-sales for the new book from Dr Lucy Hone are available from 6th October 2025.
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Episode Transcript
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Speaker 1 (00:01):
Hi, I'm Francesca Rudkin and I'm Louise Area and welcome
to season five of our New Zealand Herald podcast The
Little Things.
Speaker 2 (00:07):
Good to have you with us.
Speaker 3 (00:08):
So in this podcast, we're joined by experts and theirfield
to talk about the little things that you need to
know to improve all areas of your life. As you
will know, there is a lot of information and quite
often confusion out there, so we try and cut through
that bring you some clarity so you can make your
own well informed decisions on your well being.
Speaker 1 (00:24):
Now, we've talked about saving our own brains before on
this podcast with doctor Ginny Mansburg. Gosh, a couple of
years ago now, I think.
Speaker 3 (00:31):
Early on seasons ago.
Speaker 4 (00:32):
Yeah.
Speaker 3 (00:32):
Yeah.
Speaker 1 (00:33):
We've also touched on caring for older loved ones, some
of who might be showing some changes in cognitive function. Today,
we're going to talk to someone who shares her personal
story of and loving and ultimately losing a loved one
with dementia. Francesca and I have friends for whom this
has been a reality. And while there is a coarse sadness,
anxiety and uncertainty with cognitive decline, with the right help,
(00:54):
I have learned from listening to a friend that there
can be levity and enjoy too. It's in the little
things we go.
Speaker 3 (01:01):
So with all the types of cognitive decline under the
dementia umbrella, it's sensible to talk about it, learn a
little bit more about it so we can be better
equipped to support our own loved ones if needs be,
and better understand our friends, you know, with lived experience
and what they're going through meaning, dignity and purpose. They're
the cornerstones of our lives. So how do we ensure
(01:22):
that this continues for those living with dementia? How do
we cope along the way while we may both be
supporting and also observing someone grieving for someone who is
still physically with us, but they are changing and often
quite you know, rapidly.
Speaker 1 (01:39):
That's right, And I think you know we are coming
to this with sort of curiosity and compassion because I've
been on the periphery of other people's experience, but I
haven't been affected personally touch would yet by someone close
to me suffering with dementia.
Speaker 3 (01:54):
No, I'm very much the same. I do have a
family member who has dementia, but just I've experienced a
lot of friends who've gone through it, And I think
the thing that sort of strikes you the most is
how varied and how different the experience can be, the
different diagnosis and what they can potentially mean, the way
the person who's affected by it responds to it, the
(02:19):
a the ages, you see, the pressure it puts on.
Often just by the nature of our lives, there might
just be one a partner or one sibling, maybe a
one family member who's dealing with the day to day
caring of someone with it, and we see the impact
that that has, and how do you manage that maybe
(02:40):
as a family and come together a little bit better
to support people. I mean, there's just so much to
touch on, isn't there.
Speaker 1 (02:47):
And my limited experience was with a neighbor who just
watching him and the frustration and the fear in the
early stages of grappling with his diagnosis and actually not
really accepting it. So but as I understand, because I
have stopped and listen to a few people now, every
single experience is quite unique. So whilst we're going to
be speaking with Lucy about her particular experience, where I'm
(03:11):
painfully aware that it is definitely not a one size
fits all situation.
Speaker 3 (03:16):
No, not at all, and you also mentioned, you know age.
It can impact people at all ages or a little
bit younger maybe than we think. Between five and ten
percent of all people with dementia under the age of
sixty five, and more than five thousand people in New
Zealand have younger onset dementia. And this was the experience
(03:36):
for our guests today. Her brother was diagnosed young and
passed away seven years later.
Speaker 1 (03:42):
So Doctor Lucy Hone is regarded as a global thought
leader in the field of resilience psychology. She's an adjuct
Senior Fellow at the University of Canterbury and an internationally
sought after professional speaker, best selling author and award winning academic.
Lucy helps individuals, teams and communities find their way through
hardship and loss. She's an author of the best selling
(04:03):
Resilient Grieving, How to Find Your Way Through Devastating Loss,
and her next book focuses on what she calls the
hidden grief associated with living losses. It's called how Will
I Ever Get Through This? How to explain what she
means is Doctor Lucy Hone. Welcome and thank you so
much for your time.
Speaker 2 (04:19):
Thank you so much for inviting me to join you today.
Speaker 3 (04:23):
We are absolutely thrilled to have you on the podcast.
And look, before we start, we just want to acknowledge
your incredible work that you have done around grief and resilience.
You've been so generous in sharing your own personal story,
which I'm sure that many of our listeners are familiar with,
dealing with the acute loss of your daughter Abby and
(04:43):
your friend Sally and her daughter Alla in twenty sixteen.
I know that you are widely loved and appreciated by
so many that you have helped in the space, and
of course you're famous for this your Ted talk, which
is now in the one hundred top must watch he
talks ever, which is phenomenal.
Speaker 2 (05:03):
Thank you. Yeah, it's funny how your life story pans.
Speaker 3 (05:07):
Out, Hey certainly.
Speaker 2 (05:08):
Yeah.
Speaker 3 (05:08):
So, you know, we just so appreciate you being here.
Speaker 1 (05:11):
So more recently, you've had an experience of different kind
of loss, a one you've described as a living loss,
and we really brought you here to hear that story today.
Speaker 2 (05:20):
It was your brother, right, my dear brother Andrew. Oh,
I didn't think i'd cry, but I might cry. We
might all cry, We all cry.
Speaker 1 (05:29):
Lucy.
Speaker 2 (05:29):
Yeah, So died during COVID, but not of COVID. He
was diagnosed with front of temporal dementia in his forties,
which is so my understanding. You know, he's my brother
and he's lived on the other side of the world,
so I'm not going to claim that I'm the expert
(05:50):
here in any way, but my understanding is that that
is incredibly rare FTD and he we started becoming worried
about him in his forties and knew that something wasn't
quite right, but he was officially diagnosed, I think when
(06:12):
he was fifty. So you just don't expect someone to
get dementia at that age.
Speaker 3 (06:19):
No, you don't. And I think that that can be
some of the difficulty with the diagnosis, isn't it. You know,
a lot of the time, and I'm talking very broadly
here about dementia, but the symptoms could be mistaken for
something else, and of course when you're that age, it's
probably not at the top of.
Speaker 2 (06:33):
The list, no, I think. But so my sister and
I both live in Altata and New Zealand, and my
brother at the time was living in the Caribbean. We
were all born in London but have all fled that
nest and so we weren't seeing him regularly either, and
when we did see him, I just thought he didn't
(06:55):
remember stuff, which seems odd now, you know now when
you look at it through that retrospective lens. I mean
I literally just thought, oh, he doesn't seem to remember
things any longer. But he was forty, so from sort
of forty six roughly, I'm thinking onwards, it's just odd
he didn't remember family memories like we did.
Speaker 1 (07:16):
So long ago memories, not recent memories.
Speaker 2 (07:20):
Yeah, long ago memories. So when we three would get
together as you do hysterically, you know, talk about your
ridiculous past as kids together, Esther and I would be
laughing about a particular memory, and he would just shrug
his shoulders and honestly pretend not to remember. Was what
we used to think. We just thought maybe he just
(07:42):
wasn't that now they were, you know, larking around in
your twenties kind of anecdotes. So and then we'd go
when we come back to New Zealand, and we get
on with it, and we just sort of just never
occurred to me that he might have dementia so young.
Speaker 3 (07:58):
So his immediate family around, when did they realize that
there was something wrong that they did need to address.
Speaker 2 (08:05):
So Caroline, my beautiful, amazing sister in law, obviously was
becoming concerned. And this is a few years ago now,
so my timeline is pretty sketchy, but I know around
they've got four beautiful children, and around the birth of
the last of those gorgeous Blatter family for four of them,
(08:32):
when Emily was born, my brother didn't react like he
had you know, it just was different. So at that
point she moved. They moved the family back from the Caribbean,
where they had been living that incredible yachting life with
four children, sometimes on a boat, so they were, you know,
(08:52):
big sailors. She moved them back to England, and I
think it was because she knew that she needed help
and they needed to find some kind of diagnosis. And
so I can't really remember how quickly all that happened.
I do know when I was told, and that was
post quakes. So I'm going to pick something around like
(09:14):
twenty eleven, twenty twelve, and I remember sitting outside of
my son's basketball match and I must have just got
the text, and it was freezing cold winter and I
sat outside in the car and read this message and
just cried and just thought, I, you know, my brother,
(09:36):
what's everything to me? When I was a little girl?
And I haven't I don't cry much about him, but
that was the moment that I really really cried.
Speaker 3 (09:48):
It was a BFT, as you call them. Yeah, I
love that expression. Tell us what that means?
Speaker 2 (09:54):
Am I allowed to swear? So Finny and Henry my
nephew from my sister's second child, And I'm not going
to go through the anecdote, don't worry Finn as when
he was quite young did say to her, It's a
bloody fucking thing, isn't it, mummy? And so in our family,
in my particular side of the family, we have short
(10:15):
had that to a BFT. And my new book is
about you know, what do you do when someone lands
a BFT fairly and squarely in your world? And how
on earth do you come back from that? So, yeah,
so that was We've had a few bfts in our
family and my brother's loss and then watching the decline
(10:39):
over the fifteen years. Rough I'm making that up, but
you know, my timeline since was really tough. Losing him,
you know, visit by visit really tough.
Speaker 1 (10:53):
Yeah, I can imagine. And I think that is one
of the things that with demeta, any type of diagnosi,
the dementia, which must be so hard because you must
be their sense of relishing them now, but watching them
decline in terms of, you know, in terms of the
memory and the memory of you and things that you join,
(11:14):
things that you can share, and the things that make
your family. Were you able to talk to him about
the consequences of his illness while before he declined further?
Speaker 2 (11:24):
No, we never did, And in truth, I don't know
how much Caroline did either. I just don't know that
from not being from being absent. But no, we never did.
I'm pretty certain on that that my job is to
accept him and love him. And so that was easy,
you know. I would turn up and fly in and
(11:46):
get on the bus and turn up at their house
and just be there as another pair of hands and
a big open heart. And that was all you can do.
And towards the end, he didn't know who Estra and
I were, but we know who he is and we
would take We had a I don't know how long
(12:07):
five days with him the year before he went into
a home and with a lot of lack of judgment,
and caring. He's still a brother. I mean, he was
naughty and frustrating and a pain in the ass, but
that's the illness that's not him.
Speaker 1 (12:25):
Yeah, And universally when I've spoken to people, that is
what they've seen to me. Is it well, it's dead
or it's still mum, you know, and that's still the year.
Speaker 2 (12:34):
Yeah. You have to suspend the judgment because I think
you know, the thing is there. I don't want to romanticize,
particularly FTD, because being young he was physically strong and able,
and emotionally and mentally not there completely changed and so
he found it frustrating. I remember one visit where he'd
(12:58):
just been just like his driving license. In fact, I
remember a visit before that when he hadn't lost his
driving license, and it was terrifying him driving around and
he was loose and loud music and you know, oh,
I can't actually remember particularly, but I remember thinking that
this is not fun. And then the next time I
went back he'd lost his license rightly, and he was
(13:20):
so frustrated because there they are in the family home
with four children who then were I'm you know, kind
of primary and secondary school age. So many school runs,
so much need to have another driver in the family,
and he just wasn't allowed to drive, and so he'd
be cross, he'd be furious and that lack of independence,
(13:42):
watching that him lose that and he doesn't understand why.
So he was Yeah, he was hard tough.
Speaker 3 (13:51):
I have to ask and please, you know, if you don't,
you can share as much or as little as you
like about Caroline's life, because I you know, I understand
it's whose but how did she cope?
Speaker 2 (14:02):
Caroline is a saint.
Speaker 3 (14:04):
Four young children in dealing with, you know, a husband.
Speaker 2 (14:07):
And so Caroline, Caroline and I went to school together
and she is just one of life's amazing people. And
she was a physio and she would say if she
was here now, it is her. It is the physio
(14:28):
in her, the care in her that enabled her to
cope and care for him. That that is you know
those vocational careers find you, don't they There was a
reason she was a physio, and there was a reason
she was so amazing at caring for him. And she
cared for him obviously right to the end of you know,
(14:51):
loving wife. But more than that, she kept him at
home for so long because she didn't want to let
him go into a home, and she knew the homes
would be hard for him because he's so physically able,
because he get himself in trouble by being physically able.
You know, those residential care facilities are designed for frail
(15:15):
elderly people. My brother was still playing ferocious tennis until
very shortly before he went into the home, playing it
badly and naughtily and lying about ball calls. So, you know,
shout out to the tennis club who tolerated him, and
he was you know, he'd swear and say inappropriate things
(15:37):
and just make up the rules as he went, but
that's community care, and they did let him keep playing.
So yeah, So Caroline amazing and was exhausted. I mean, yeah,
so that's it's a big Oh.
Speaker 3 (15:53):
It's just a definition of love there. What you've described
of her commitment to her, that's beautiful. What was it
like for you then, as you said, you know, when
you would arrive, you would go in and said, you know,
no judgment, I just need to be a supporting help
of Hancy. But I am sure, and this is the
case for a lot of people in friends of ours,
you know, whose parents have been in the situation when
(16:14):
there are siblings living overseas, and they come. But obviously
you get a shock. Obviously you can be surprised at
the decline, and it's you know, how you manage that
is quite important when it comes to supporting the people
who are doing that day to day care.
Speaker 2 (16:29):
Isn't it. Yes, it's I guess how we respond is
comes from so many aspects of our lives. And we've
had a number of losses throughout our lifetime, and both
death losses and living losses, and so I would actually
honestly say that I was less shocked because shit happens
(16:51):
to us as a family, and we know that, and
I know that in my bones. And actually, you know,
the first thing I talk about in my TED talk
is that suffer and struggle are part of life. And
the quicker you understand that, and the deeper you understand
that truly in your bones, it stops you from feeling
singled out and discriminated against when something happens. So it
(17:15):
stops the shock and accelerates the acceptance. I think in
many ways, I wouldn't be shocked by what I've found
in him. My job is just to love him, and
I would be sad sometimes, but I think when you
are caring for someone who is so we talk about
ambiguous loss, where the person is very much physically there
(17:41):
but emotionally and cognitively gone. So in that sense, would
I think our role is to meet them where they're at.
And so Andrew likes singing, she is, I believe, pretty
common with FTD. We always liked singing as a family,
so we just sung everywhere. And I think since my
(18:02):
grandmother died when I was young, like thirteen or something,
we've had a lot of tears in our family, so
we're also really not embarrassed about crying. So we would
walk around where they live in England. We would walk
around the country lanes, walk the dogs, sing loudly while
playing his iPhone, and Jimmy Buffett and Neil Diamond and
(18:24):
Elton John I would and I just think, well, I
don't really give a toss that that's what we're doing,
because this is what he wants to do, and I'm
meeting him where I'm at. And we would laugh and
cry and he would hold onto my arm and because
otherwise he'd walk out into traffic. So I look back
on it as lucky times I got to spend with
him because that's the distance thing. You don't get to
(18:46):
be there.
Speaker 1 (18:48):
Yeah, yeah, no, I've got a preparation for this. I
spoke with a friend who said that one of the
things that when she goes to see her mother, she
takes it a pack and gets the mum, gets on
a swing and she swings here for a lot this
because that is what her mother wants to do, and
she gets an inane amount of joy out of it. Well,
they both do, you know, And so I was surprised.
(19:09):
I was, you know, expecting more kind of oh, you know,
the trenches the grief are saying is the difficulty, but
there's so much unexpect a joy. Is that for you
to say?
Speaker 2 (19:21):
It's such a funny thing to say, honestly, lou Because
so I work with helping people cope with all kinds
of loss, whether that is a death, bereatment, or a
living loss. And I do quite a lot on social
media because I care about changing how we approach grief
and loss, and so social media is a great platform
(19:42):
for me to for me to be able to do that.
I care about boosting grief literacy. So I did a
post about two years ago where I'd just been in
Sydney with a bunch of high flying real estate people
and we'd run a panel on their living losses. And
I was walking through Sydney Airport and I did this,
you know, ridiculous reel saying, Oh, it just gives me
(20:04):
joy doing this work. And then I sat on the
plane thinking, did I just say that doing all this
grief work gives me joy? And oh my god, I'm
going to be completely slated for that. And then I
sat there because I was on a plane pre Wi
FI days, and just thought, actually, you need to own that,
because letting people talk about their losses, giving them the space,
(20:28):
the scaffolding, the opportunity to talk about grief, making this
world less grief phobic, grief awkward, making the whole topic
less taboo, does give me joy because people are desperate
to be able to talk about these things, and there
are moments of joy and pride and beauty even in
(20:55):
the darkest times of our lives. And I think that
as a researcher, I understand that because I understand that
we have positive emotions for a reason, and particularly when
you're going through really tough stuff and the negative, challenging
emotions abound. Then it is part of this incredible adaptive
(21:18):
process that we have as humans, that it is in
our DNA to punctuate those challenging emotions with good moments
and good experience, you know, we come up for air essentially.
And the prevailing grief theory nowadays is something called oscillation theory,
where what researchers have noticed is that it is both
(21:42):
typical and healthy to approach your loss and do all
that crying and grieving and experience the hard emotions, and
then to withdraw and disengage and go and do things
that actually do make you laugh and make you feel good.
And this oscillation, this ebb and flow backwards and forwards
(22:03):
between immersing yourself and the sorrow and then avoiding the
sorrow is really healthy.
Speaker 3 (22:10):
So then that would be really useful for someone who
is caring for a close family member at the moment
with dementia. It's that whole Yep, you're there, and you
feel obliged to be there, you know.
Speaker 2 (22:22):
Quite a lot.
Speaker 3 (22:22):
But actually it's also absolutely fine for you to steep
away and for you to go and take a break
and take a moment and find that joy for you.
And that's a really great coping great coping strategy, and
not to feel guilty about it, and not to.
Speaker 2 (22:38):
Quash your desire to want to take a break and
do other things and to feel a bit of one
of the you know where I work with ten positive
emotions in my work, so that's or a w E.
I'm not going to list them all, but basically I
have to spell out all because otherwise everybody wor says
(23:00):
so or and hope and inspiration and love and humor
and curiosity, all of those things, you know, finding those
things and sprinkling them across your life, particularly when you
are going through a long endurance struggle, this kind of
(23:23):
chronic illness. That really does I think people underestimate chronic loss,
chronic sorrow, and how devastating and exhausting debilitating that is.
Speaker 1 (23:37):
That's the thing I guess about dementia and everything under
the dementia umbrella is that it doesn't have a For example,
as opposed to a cancer diagnosis, where you go through treatment.
It might be long and grueling, but you most often
statistics would say that you do come out the other side.
Sometimes obviously you don't, or you die later. But with dementia,
(23:58):
it's only going to get. It's I don't want to
say worse, but it's only going to get more different
and more far away from the person that you once knew.
But you've got to go along with it.
Speaker 2 (24:09):
Yeah, totally. And so technically it's called a non finite loss,
and that is one of the things, one of just
one of the aspects that make it so exhausting. You
don't know how long it's going to last, you don't
know how quickly the demise is going to occur, you
don't know what's ahead. And then on top of that,
(24:32):
there are all those other aspects, both tangible losses and intangible.
And the tangible ones are your income, you know, your routines,
the driver's license, those kind of things, and your role
as in my case you know his role as a
father and husband, but Erna too. And then the intangible
(24:55):
ones are the companionship, your identity, the memories, all of
those things. So it just has so many complex aspects,
additional aspects compared to a death bereavement, which is you
know final and happens and you're there, But that process
(25:17):
of building up to and never really knowing what's going
to happen is I think extra additionally, so much harder
because you have all of these losses daily, really and weekly.
Speaker 3 (25:31):
Well, if we've learned anything post covid as, we're not
good at uncertainty, are we.
Speaker 2 (25:35):
No, we don't like uncertainty humans, although oddly we can
cope with it, but we don't enjoy coping. We like
predictable things. So one of the things I've written about
in my new book is islands of certainty, which comes
from Pauline Boss's work, and when you're facing uncertainty, she
(25:58):
says that it's really helpful to have your islands of certainty,
the people, the places, the practices, the possessions that you
can hang on to. And I add possessions because I'm
sitting here, you know, surrounded by bits that are abby
and are my brother on my necklace. I've got a
little a and it wasn't till I've had it there
(26:22):
since twenty twelve. And I'm doing the Coast to coast
a couple of years ago, don't ask me. And I
was finishing the run and I was well stumbling along,
not really running, and I was holding on to my
little A, and then I suddenly thought, Wow, I've lost
my brother Andrew abby, my daughter and my mum.
Speaker 4 (26:40):
Ann.
Speaker 2 (26:41):
I was like, whoa, they're all here, my a's But so,
you know, those talisman possessions. Your islands of certainty can
be places where, if you are faced with so many uncertainties,
places to go to. It might be a park bench
where you us can feel kind of grounded and catch
(27:03):
your breath. It can be people, of course, but it
can be practices. And that might be I try and
use the Daily Calm Meditation app. I'm going to be
pretty honest, and I'm pretty crap at it, but I
you know, when I'm feeling more stressed, I tend to
use it more actually, and they have great three minute meditation.
(27:25):
So it might be a practice such as that, but
it might be putting on your ug boots in the
evening and your morning coffee or getting out for a
walk in the morning. You know, all of these very
daily practices and routines and ways of thinking, acting and
being are actually what enables us to code.
Speaker 1 (27:43):
Yeah, that's interesting even that you say that when I
went through an illness and there was this one mug,
you know, and that one mug was the one certain
thing I was going to hear my fist cup of
tea out of in the morning, and that one mug
just get it still does and I look at it,
and the one I don't know. I don't know why.
And my son often says he's in Canterbury, but he'll
(28:04):
often say, oh, I need to get back to the rock,
and we're like, what's the rock? Oh, well, you guys home.
I need to go back and I need to touch
the rock. So I guess that's you know it is.
I love that islands and islands of certain of certainty
and a sea of uncertainty.
Speaker 2 (28:20):
Exactly that, exactly well, said Lucy.
Speaker 3 (28:24):
There's a couple of things you mentioned that I want
to pick up on. One was the coast to coast
because we're trail runner, so I was like, what, Oh
my goodness, this is fascinating. But that's a whole other podcast.
You mentioned just how complex this situation is, and I
think that's really great for people who are in the
middle of this at the moment, the supporters, the cares,
(28:44):
just to have that acknowledgment that it is really complicated.
One of the things which I know causes an awful
lot of stress is knowing the right moment to put
a family member or a loved one into care that
it's no longer there, no longer able to really give
that person the key that they need, and it's time
to make that move. And that is a really hard
(29:04):
decision to make without there being a lot of guilt
and I don't know, maybe anger and sadness and various
other things.
Speaker 2 (29:13):
And in my own family context, I'm not qualified to
talk about that, And I would never do that to
Caroline because that is her family and their decision, and
I know how terrible it was for her, devastating for
all of them, so I do I can acknowledge, of course,
(29:35):
I know that bit that it's terrible that moment for people,
and you don't know how long it's going to be,
and there are so many complexities around that, and all
I would say is that is the time to dial
up the self compassion that to be real, not perfect,
and there's no perfect moment, and there's probably no perfect
(29:59):
place either, and no perfect process. You know, you're in
really messy territory then, And not only as humans do
we not like uncertainty, but we don't like messy things
that we can't control either. So my huge respect to
(30:19):
anybody who has been faced with that decision, And really,
all I feel qualified to say to you is go
easy on yourself, because there's no perfect moment, time, or
way to do that. But I think, as is the
case in any big decisions in our life, all we
can do is trust our gut and then be kind
(30:42):
to ourselves that we did the best we could, you know,
with what we knew at the time. So, yeah, that's
such a tough one.
Speaker 1 (30:53):
It's interesting because of the nature of dementia. Obviously there's
lots of little things lost along the way or end
or gained, but these also the big moments, like the
decision to not be able to keep for them at
home any longer, and then ultimately they pass pass away.
(31:15):
And I guess I don't know how much time you
can eat energy, you can even give that while you're
in it, because again that's another if TD seems to
have a quicker time between diagnosis and passing.
Speaker 2 (31:27):
Or I don't know, Actually I'm really not qualified to know.
Andrew was yeah, sort of seven or eight years. It's
a terrible thing. As his sister, I don't even know
how old he was when he died, But it didn't
feel quick and it's that unknown, you know, it's that
living in limbo when you just don't know how long
(31:50):
it's going to be. And when he was such a big, strong,
healthy bloke And that's funny, isn't it nice think of
him as a bloke the English kind of phrase for
what he was. So yeah, so so hard trying to
predict that, and then lived through the just not knowing.
Speaker 1 (32:13):
Again. You know, I guess that's we use your islands
of certainty, but it mustn't feel like it at the time.
Just must feel like I guess even ternity, yeah, tunity
and also maybe a blir.
Speaker 2 (32:24):
Yeah, and that I remember right at the beginning, Caroline
said to us that one of the many challenges of
FTD was that it was acknowledged that it kind of
happened in that period where for a man in particular,
they were likely to be the key bread winner. You've
got teenage children in the house, and you know those
(32:47):
two things are additional losses. And for the teenage children,
you know, it's tough to have an awkward, challenging dad around,
tough for your friends, tough for you, really tough for
your social life. You don't want dad turning up at
school at the parent teaching meetings and the assemblies and
(33:08):
things like that, but of course you do so just
extra tough, I think in terms of family dynamics.
Speaker 3 (33:16):
Lucy, I can't thank you enough for sharing with us today,
really appreciate it. I've had a cry throughout this session.
Thank you for sharing your story and also just for
those lovely little glimmers of wisdom and hope that you've
given us to how we can.
Speaker 1 (33:33):
I can totally see how you get joy out of
what you do. Yes, and we're so lucky that you're
doing it.
Speaker 2 (33:40):
Thank you. I think everything has taught me lived experience
and all the research has just taught me to embrace
all of life. You know, it's ups and its downs,
and know that it's far from perfect. And I just
seem to have this phrase in my head all the time,
that's seeing my new book. How will I ever get
(34:03):
through this book that just says all of it, you know,
where somehow have to accept all of it And that
doesn't mean it's easy or fun or what we asked for.
But life's a lot.
Speaker 1 (34:17):
Hey, Oh my goodness. Yes, and I'm so glad you've
landed on that title because I think you know I
can just see it, you know, I can see people
going That's exactly what I need right now.
Speaker 2 (34:26):
And the good news is, you know, I can tell
you from a research perspective that people do get through it.
So that is I think what I enjoy most is
giving people hope and belief that they somehow can get
through whatever it is with grace and compassion.
Speaker 1 (34:41):
And evidence based research, which we love as well.
Speaker 2 (34:43):
Yeah, we do.
Speaker 1 (34:45):
Thank you so much.
Speaker 2 (34:46):
Thanks for inviting me, and thanks for everything you do
and all your listeners. You know, look after yourself.
Speaker 3 (34:51):
You're listening to the little things. That was doctor Lucy Hone,
author of Resilient Grieving, talking about the emotional toll of
supporting a loved one with dementia. Lucy also mentioned her
new book on this topic. It's coming. It is called
How Will I Ever Get Through This? It'll be in
stores early February. Up next, Helen Frank from Alzheimer's New
Zealand joins us with some practical advice for families navigating
(35:11):
a dementia diagnosis, where to get help and what support
is available.
Speaker 2 (35:15):
Back soon.
Speaker 3 (35:30):
Welcome back.
Speaker 2 (35:31):
So we've talked.
Speaker 3 (35:32):
Through the emotional and personal toll of a dementia diagnosis,
But we also want to give you some practical advice,
whether you have concerns a loved one may have dementia,
or you already have a diagnosis and you don't know
what's next or where to get support. So joining us
next is the manager of Alzheimer's Tartanaki, Helen Frank. Thank
you so much for your time, Helenly, Good morning.
Speaker 1 (35:53):
Helen, Thanks so much. Look, even though we know there
are many types of dementia, are there universal signs we
could all benefit from being familiar with?
Speaker 4 (36:02):
Yes, I mean, I think the first thing people think
of when they think of dementia or Olzummer's is memory loss.
And certainly that short term memory is significantly affected. So
we all have times when we walk in a roam
and we forget what we walked in for right, that
happens to everybody. For people well to dementia, that is
happening regularly, like every day, and things like conversations you've
(36:26):
just had are forgotten, or you know, they're asking questions
that they've asked repeated times. So yeah, that memory loss
is really quite significant, and they might have difficulty of
performing regular daily tasks that they've always done, they suddenly
have trouble with it, or they might find that they
have lots of problems with language or finding the right words,
(36:49):
and that that's it. So it's more than just the
occasional time that's happening, which I think everybody says, oh,
you know, that happens to me, But it's a daily
occurrence when these things are happening, and some people notice
changes to their mood and their personality and their behaviors.
So it's I mean, it's affecting the whole brain. So
(37:09):
it can cause a range of symptoms depending on whereabouts
their dementia is starting on what type of dementia it is.
But generally, what we would say is that if you
feel like you're having some kind of cognitive issues, are
you you're feeling like it's really getting hard to process things,
or you're feeling quite disorientated at times, you know, traveling
a regular route and you suddenly don't know where you are,
(37:30):
that that is the sign that something could be going on,
and really you need to go and seek medical attention.
You need to go to your GP.
Speaker 3 (37:37):
If we suspect someone is becoming impacted by cognitive decline,
how do you approach it. What's the best way to
approach it?
Speaker 4 (37:45):
Oh, that's a tricky one. And it is still so
much stigma around, right, this is I don't quite know
why there's that fear of you know, if people think
that I've got something wrong with me and I can't
actually manage things, that something's going to happen. You know,
there's that there's terrible fear and stigma that goes along
with dementia and punitive decline. So I think that's always
(38:07):
and it often becomes this big elephant in the room
that everybody's kind of tiptoeing around not knowing how to address.
And I think sometimes it's for the person who's experienced it.
They often know that there's something going on themselves, right,
So I think sometimes it is just pecking your time,
pecking making sure it's the right person in the family.
If you've numerous people have noticed changes, it's like who
(38:30):
might be the best person to approach this? So who
might this person listen to? And it's doing it in
a really kind of gentle way of sitting them down,
making a coffee and just saying, look, we've noticed that
you're getting a little bit forgetful or so if this
has changed, or you seem to be feeling you seem
to be getting a bit withdrawn or whatever it might be,
and just seeing if they've noticed it and checking that
(38:51):
out and then saying, how's about we go and see
your GP together. You know, sometimes that having broaching that
subject with the GP on their own can be really daunting.
So maybe why don't we go and see them together.
Why don't we book an appointment and we'll go together,
Or why don't we have a chat with the practice
news and see what she thinks. Yeah, so it's kind
of broaching it that way if you can.
Speaker 1 (39:12):
So, like a lot of things, GP is your first
port of call.
Speaker 4 (39:16):
Yes, we always advise that because the early signs could
be something else, you know, So it's making sure that
you go to the GP so they can do a
good examination, take a history, do bloods and things like that,
and just check there's nothing else going on, because sometimes
things like depression, it occurs in older age, just as
(39:37):
occurs in middle age and younger age, you know, and
depression itself can cause and impact some cognitive issue, cause
qugnitive issues, but that can be simply fixed with an antidepressant.
So we'll always say go to the GP first, have
that discussion and they can rule other things out that
might be simply solved, or they can say well we
(39:59):
think dementia and this is what the process is.
Speaker 3 (40:02):
Yeah, and then Helen, as they do have concerns that
it's dementia, do they do the diagnosis? Does your GP
do a diagnosis for you?
Speaker 4 (40:10):
Yes? Generally in New Zealand, the GPS and primary care
practices would handle a dementia diagnosis if it's straightforward. If
there's something more complex going on, so if the person's
got some kind of physical issues going on, or they're
under sixty five for example, and very young, then they
(40:31):
they might refer them to the specialist services at the
hospital and do things like scans and things to see
if something's going on. But generally it's handled through the
GP and it's just a case of managing it that way.
Speaker 1 (40:44):
So you've got your diagnosis, what happens next, what should
people expect?
Speaker 4 (40:49):
That's the thing that does differ depending on where you live.
So here I can tell you what happens here in Taranaki.
So ideally what they would do is, you know, kind
of talk to them around this is what it means
this is how it might impact you, and this is
an organization that might be able to help, and they
might point them in our direction and refew to us.
(41:12):
And here are Alzheimer's Tallanaki. We have community advisors, community
workers who can walk alongside that person, so my worker
would go out and visit them, would bring us some
information and advice and offer education. We do education sessions
here on a monthly basis for families and people have
been newly diagnosed. And then we have things like support
(41:34):
groups for carers. We have you know, activity groups and
things like book group and we have a day respite
program here for people who are further on in their journey.
So yeah, we've we've got a range of services, but
that's not necessarily available everywhere, depending on where you are.
But there are lots of resources online, so things like
the Alzeimer's using a website has fantastic resources. And I
(41:57):
would always say to people, you know, although it's frightening,
if you can equip yourself with information and knowledge that
gives you, then power doesn't it. If you have the knowledge,
then it just will allow you to choose and have
a bit more choice. And what happens for you.
Speaker 3 (42:17):
You're so right, Helen. You know, there's nothing worse than
you get a diagnosis and then you walk out of
a doctor's surgery and you just sort of find yourself
standing there going what do I do?
Speaker 2 (42:28):
Right?
Speaker 3 (42:28):
Okay? Do I just get on? So knowing that you've
got this port of call to start, you know, this
place to start and sort of you know, work out
what services are available and things to you. Is the
information there? You mentioned that there is a care support
group as well, which I think must be really important.
Is there lots of information there and advice as to
(42:49):
how to care for someone with dementia as well.
Speaker 4 (42:52):
If you've got access to a computer, there's lots of
stuff out there in it and lots of information. And
for us, the care of support groups are integrable to
what we do because it's around supporting the careers to
do the caring. You know, they're they're the the amount
of unpaid care that's set out in New Zealand. You
know a majority of people wis dementia are being managed
in their own homes in the community and being supported
(43:13):
to live well. But that to do that, it relies
on the careers. Though the unpaid careers, the family, the
fano you know, who are living with them, and for us,
the care support groups are around that peer support. So
you're you're you're you're kind of sharing and problem solving
with people who are on the same journey who understand
(43:36):
what you're going through. Yes, it's different for everybody and
there's different nuances to everything, but you've still got people
who yet go, oh, yeah, that happens to my mom
or that happens to my husband. You know that's what
works for you. Oh this works for me, Okay, well
I'll try that. You know. It's it's that kind of
common sharing and I just think we can't understate the
power in that it really is and beneficial.
Speaker 1 (43:58):
Sabb It for me. Do know overly promotes social media,
but a friend of mine told me that Facebook groups
were hugely helpful for her. Yes, and then you probably
are talking to people from all over the country as.
Speaker 4 (44:10):
Well, exactly, Yeah, so I know it certainly. The Young
Onset Service is that YODA in Wellington. They do online
care groups as well for people who are going through that,
and they can connect people all through the through the country.
Speaker 1 (44:23):
So yeah, so you sort of mentioned it's different around
the country and surprise, surprise, it's a bit of a
postcode lottery. We've heard that before. Do you need to
be a squeaky wheel?
Speaker 4 (44:35):
Sometimes yes, and I do think that it can be
hard certainly. I mean, obviously dementia is the longer we live,
the older we get, the more chance of getting demensia. Right,
so there's more cases of dementia. And those people who
are older and that older generation generally don't like being
the squeaky wheel. So it's often the husband will manage
(44:57):
things and cope as best you can for as long
as possible, muddling through, and then things get really bad
and then it comes to the attention and they start
to say, you know, or the one of the kid's
visits from overseas and goes, oh my goodness, I don't
know how you've managed so long like this, you know.
But yeah, so it does sometimes require the care to
(45:17):
be the squeak will and to actually go back and
say we need this, help them, this is.
Speaker 2 (45:22):
What we need, helen.
Speaker 3 (45:24):
When do we know someone is ready for care outside
the home?
Speaker 4 (45:29):
That's a really difficult I.
Speaker 3 (45:31):
Know, I know, and it would different for everybody, and
those very different. Maybe the signs or the situations that
you might find yourself and will you need to start
thinking about maybe getting some care for for a love.
Speaker 4 (45:45):
One for for me. It boils down to safety if
that person's safety is being severely impacted. So if they're
getting up frequently during the night and they're wandering around,
going outside looking for somebody, and they're dressing gown or
you know that kind of thing where they could actually
come to heart from what's going on for them, or
(46:05):
if they're leading the pod on the stove to the
point where it's it's you know, smoking and the neighbors
call the fiber gate, you know that kind of thing. Unfortunately,
that is quite a common occurrence. So it's you know,
we can't say and we never say to people you've
got to put mine kit. You know, that's not our job.
It's not our job to say you should be doing this.
(46:27):
It's our job to point out the options and to
say this is this is you know that you can
get assessments through the through the GP. So if things
are changing significantly like that, what we would be telling
people to do would be asking your GP to get
you a NASK assessment. So it needs assessment and that's
done through the hospital team, and they can put in
a package of care to the home so they can
(46:49):
get the home supports them to come and help with
cooking and cleaning and that kind of thing, and showering.
But that only works to a point, right because you
know they could put people in three times a day.
But if mum's getting up at two o'clock in the
morning and wandering around in the street, that is probably
the point where things will fall over. And that's when
(47:11):
you start looking at kind of residential care.
Speaker 3 (47:13):
That's really good to know though there are there are
things that you can do in between there, which is great.
Speaker 1 (47:19):
I've heard there's a long wait for a NASK assessment.
Is it correct or it.
Speaker 4 (47:23):
Can be very so I think here in Tallanaki it's
not too bad. There's a bit of a weight, but
it's certainly more than they used to be. But I
know in some parts of the motto it was up
to six months, which is really shocking. You know, if
you've got somebody who needs that kind of care now,
waiting six months for it is not really an option.
Speaker 1 (47:42):
Well, with the rate predicted to rise, that's a bit
of a better. Yeah, we need to be the ambulance
at the top of the cliff, don't we. Do you
have one critical piece of advice? I mean, you've given
us lots of good tips this morning, but do you
have any great piece of advice of people caring for
a one with dementia?
Speaker 4 (48:01):
Oh? I think for me, it's being kind to yourself
and looking after yourself. You know, caring for someone with
dementia is a really tough job, and it's it's a
privilege and an honor for many people, but it's still
it's tough, and I think there's a whole lot of
guilt that goes with those decisions around having to put
(48:23):
cares in the home or having to put their gloved
on into care. And I think if you can free
yourself with a bit of that, you know. So, yes,
it might be the mom's goal is to stay at
home for as long as possible, or we will do that,
We will do our best to maintain that, but there
might come a point where something has to change and
you don't have to have those conversations straight away, but
it's something around kind of talking to other people around that,
(48:46):
so you're sharing that with others so you don't feel
like you're carrying all yourself because that's a lot.
Speaker 3 (48:52):
Yeah, Helen Frank, thank you so much for your time
and for all your amazing work.
Speaker 4 (48:57):
Thanks very much.
Speaker 1 (48:58):
You guys are just thank you so much. Awesome.
Speaker 3 (49:13):
I have so much respect for Lucy and what she does,
and I just think it's an absolutely beautiful thing that
she is trying to achieve when she just talks about
we need to approach grief differently, whether it's the loss
of a loved one someone has died, or whether it's
this ambiguous loss, whether it's this period of uncertainty that
(49:34):
we go through, you know, while we we.
Speaker 1 (49:37):
Care for someone who's when a BFT happens. I love
that bloody fucking thing. It's going to come up.
Speaker 2 (49:43):
All that's going to kind of come a lot.
Speaker 3 (49:44):
Take that one, people and use it. Just even saying it,
I think when things go wrong will make you feel better,
but not. I just have a huge amount of respect
and admiration for what she is trying to achieve. And
I just I really hope that what we spoke about today,
if there is someone out there who is about is
venturing into this world of looking after a loved one
with dementia or is in the process of it or
(50:06):
has done it. I just hope they really do take
to heart you've done the best that you could, and
that there is no right or wrong way. There is
no perfect way.
Speaker 2 (50:13):
To go about this.
Speaker 3 (50:14):
It is hard, it is filled with complexities, and you
can just sort of take one step at a time.
And I hope that people find the islands of certainty. Actually,
I just think islands of certainty is something we should
use everything.
Speaker 1 (50:25):
Every time, absolutely, And also just that meeting them where
they are, and my conversations with my friend as well,
that came up a lot. It's not about you, you know,
don't visit them with no expectation on any given day.
And I wonder about how much I do that in
my everyday life with people who don't have dementia. But
just go with an open heart and open mind and
(50:47):
whatever is there on the day, you just meet it there.
Speaker 3 (50:50):
The one thing that I've noticed when friends and family
have spoken about a loved one with dementia is that
it can be quite a different experience. For that person
can be quite a happy existence, right, and for others
it can be really truly difficult, and you know, they
(51:12):
can be very angry and their their their personality and
their mood changes so much and it can be very difficult.
So everyone's going to have a different experience. And that
was the other thing I yet that you know, you
need to take from from what Lucy was speaking about.
Speaker 1 (51:27):
And that could it's all going to be unique and
it's day to day, that's right, And I think that
I think that some from what I understand under again
the dementia umbrella. There are so many different types, and
you know, they have their own attributes and some of
them do have you have more of an issue with
anger and frustration, and some of them just seem to
(51:49):
be filled with a little bit more joy. I don't
know why. I don't know.
Speaker 3 (51:54):
Bring on that self compassion. Don't hold back on that.
I know that we talked about. You know when people
talk about self care and I'm like, who's got the time? Really, honestly,
you're just putting more pressure on us to look after ourselves.
But this is a moment where that self compression is
so important, isn't it right? Look, if you want to
hear more or get more information from Lucy, the book
we mentioned is Resilient Grieving. She is on Facebook and
(52:19):
Instagram at doctor Lucy Hone and she also has the
ted talk out Three Secrets of Resilient People.
Speaker 2 (52:27):
So there you go.
Speaker 3 (52:27):
There's some tools for you to enjoy.
Speaker 1 (52:30):
Francis, because anything happy happened in your way, happy or
happy or just brought you some joy or some calm.
Speaker 3 (52:36):
Do you know what? I'm just going to go back
to a podcast we did this season with doctor Carlie
Wilson talking about, you know, professional athletes and how we
can take some of the tools and trick sleats. She
was saying, and this comes back to the way we
speak to ourselves again, which I suppose kind of relates
a little to the self compassion we were just talking about,
you know how she said to me, Oh, no, no, no,
it's not should and I could or I you know,
(52:57):
don't talk like that. Is it helpful or unhelpful? Do
you know what this week I've you said, I've used
that quite often. I've stopped on God, this is helpful.
That was a very press went podcast. Not really, Oh
that was simple okay, change tag. So I just thought,
I just Danny, what though, it takes a bit of
work to make yourself change the way you might think
(53:19):
about something or the word the word absolute.
Speaker 2 (53:22):
I had had to be really conscious of it.
Speaker 3 (53:25):
It's not like these things this may just be mease,
These things don't come quickly and easily.
Speaker 2 (53:31):
I have to work it to word.
Speaker 1 (53:32):
Were talking to the master of Somebody has to get
over the head with something before it goes in. Oh,
that's that's great.
Speaker 2 (53:38):
I got a lot out of that.
Speaker 1 (53:38):
One too, actually, to be honest with you. But but
my joy thing this this week at least, was actually
speaking with my friend about this topic today, because it's
someone we go on our big hikes with and stuff,
but I don't you don't get that one on one
time with them. And I knew that was going on
in life, but I didn't know the details, and I
don't know, I guess. Just just speak with her and
(54:01):
her being so generous with her time with me really
hit home and brought a whole different perspective to it.
As I say, not bearing skittles by any stretch of
the imagination, but not all doom and gloomy.
Speaker 3 (54:14):
So are you suggesting here that maybe just reaching out
and talking to a friend occasionally and connecting with people
gives the joy noise.
Speaker 1 (54:20):
One hundred percent? It does maybe asking them about something
that's money. You think their life mentioned that a few
times too, but we'll just keep You're just getting working
over here with that one as well.
Speaker 2 (54:28):
I love it. I love it. Yes.
Speaker 3 (54:30):
Thank you to all our friends who shared their personal
experiences on this topic, and thank you for joining us
on our New Zealand hera podcast series, The Little Things.
We hope you share this podcast with the women in
your life so we can all better understand and support.
Speaker 2 (54:43):
Those with dementia.
Speaker 1 (54:44):
You can follow this podcast on iHeartRadio or wherever you
get your podcasts, and for more episodes from us on
other topics, head to zed Herald dot co dot
Speaker 3 (54:53):
Z and we'll catch you next time on the Little
Things
Hi, I'm Francesca Rudkin and I'm Louise Area and welcome
to season five of our New Zealand Herald podcast The
Little Things.
Speaker 2 (00:07):
Good to have you with us.
Speaker 3 (00:08):
So in this podcast, we're joined by experts and theirfield
to talk about the little things that you need to
know to improve all areas of your life. As you
will know, there is a lot of information and quite
often confusion out there, so we try and cut through
that bring you some clarity so you can make your
own well informed decisions on your well being.
Speaker 1 (00:24):
Now, we've talked about saving our own brains before on
this podcast with doctor Ginny Mansburg. Gosh, a couple of
years ago now, I think.
Speaker 3 (00:31):
Early on seasons ago.
Speaker 4 (00:32):
Yeah.
Speaker 3 (00:32):
Yeah.
Speaker 1 (00:33):
We've also touched on caring for older loved ones, some
of who might be showing some changes in cognitive function. Today,
we're going to talk to someone who shares her personal
story of and loving and ultimately losing a loved one
with dementia. Francesca and I have friends for whom this
has been a reality. And while there is a coarse sadness,
anxiety and uncertainty with cognitive decline, with the right help,
(00:54):
I have learned from listening to a friend that there
can be levity and enjoy too. It's in the little
things we go.
Speaker 3 (01:01):
So with all the types of cognitive decline under the
dementia umbrella, it's sensible to talk about it, learn a
little bit more about it so we can be better
equipped to support our own loved ones if needs be,
and better understand our friends, you know, with lived experience
and what they're going through meaning, dignity and purpose. They're
the cornerstones of our lives. So how do we ensure
(01:22):
that this continues for those living with dementia? How do
we cope along the way while we may both be
supporting and also observing someone grieving for someone who is
still physically with us, but they are changing and often
quite you know, rapidly.
Speaker 1 (01:39):
That's right, And I think you know we are coming
to this with sort of curiosity and compassion because I've
been on the periphery of other people's experience, but I
haven't been affected personally touch would yet by someone close
to me suffering with dementia.
Speaker 3 (01:54):
No, I'm very much the same. I do have a
family member who has dementia, but just I've experienced a
lot of friends who've gone through it, And I think
the thing that sort of strikes you the most is
how varied and how different the experience can be, the
different diagnosis and what they can potentially mean, the way
the person who's affected by it responds to it, the
(02:19):
a the ages, you see, the pressure it puts on.
Often just by the nature of our lives, there might
just be one a partner or one sibling, maybe a
one family member who's dealing with the day to day
caring of someone with it, and we see the impact
that that has, and how do you manage that maybe
(02:40):
as a family and come together a little bit better
to support people. I mean, there's just so much to
touch on, isn't there.
Speaker 1 (02:47):
And my limited experience was with a neighbor who just
watching him and the frustration and the fear in the
early stages of grappling with his diagnosis and actually not
really accepting it. So but as I understand, because I
have stopped and listen to a few people now, every
single experience is quite unique. So whilst we're going to
be speaking with Lucy about her particular experience, where I'm
(03:11):
painfully aware that it is definitely not a one size
fits all situation.
Speaker 3 (03:16):
No, not at all, and you also mentioned, you know age.
It can impact people at all ages or a little
bit younger maybe than we think. Between five and ten
percent of all people with dementia under the age of
sixty five, and more than five thousand people in New
Zealand have younger onset dementia. And this was the experience
(03:36):
for our guests today. Her brother was diagnosed young and
passed away seven years later.
Speaker 1 (03:42):
So Doctor Lucy Hone is regarded as a global thought
leader in the field of resilience psychology. She's an adjuct
Senior Fellow at the University of Canterbury and an internationally
sought after professional speaker, best selling author and award winning academic.
Lucy helps individuals, teams and communities find their way through
hardship and loss. She's an author of the best selling
(04:03):
Resilient Grieving, How to Find Your Way Through Devastating Loss,
and her next book focuses on what she calls the
hidden grief associated with living losses. It's called how Will
I Ever Get Through This? How to explain what she
means is Doctor Lucy Hone. Welcome and thank you so
much for your time.
Speaker 2 (04:19):
Thank you so much for inviting me to join you today.
Speaker 3 (04:23):
We are absolutely thrilled to have you on the podcast.
And look, before we start, we just want to acknowledge
your incredible work that you have done around grief and resilience.
You've been so generous in sharing your own personal story,
which I'm sure that many of our listeners are familiar with,
dealing with the acute loss of your daughter Abby and
(04:43):
your friend Sally and her daughter Alla in twenty sixteen.
I know that you are widely loved and appreciated by
so many that you have helped in the space, and
of course you're famous for this your Ted talk, which
is now in the one hundred top must watch he
talks ever, which is phenomenal.
Speaker 2 (05:03):
Thank you. Yeah, it's funny how your life story pans.
Speaker 3 (05:07):
Out, Hey certainly.
Speaker 2 (05:08):
Yeah.
Speaker 3 (05:08):
So, you know, we just so appreciate you being here.
Speaker 1 (05:11):
So more recently, you've had an experience of different kind
of loss, a one you've described as a living loss,
and we really brought you here to hear that story today.
Speaker 2 (05:20):
It was your brother, right, my dear brother Andrew. Oh,
I didn't think i'd cry, but I might cry. We
might all cry, We all cry.
Speaker 1 (05:29):
Lucy.
Speaker 2 (05:29):
Yeah, So died during COVID, but not of COVID. He
was diagnosed with front of temporal dementia in his forties,
which is so my understanding. You know, he's my brother
and he's lived on the other side of the world,
so I'm not going to claim that I'm the expert
(05:50):
here in any way, but my understanding is that that
is incredibly rare FTD and he we started becoming worried
about him in his forties and knew that something wasn't
quite right, but he was officially diagnosed, I think when
(06:12):
he was fifty. So you just don't expect someone to
get dementia at that age.
Speaker 3 (06:19):
No, you don't. And I think that that can be
some of the difficulty with the diagnosis, isn't it. You know,
a lot of the time, and I'm talking very broadly
here about dementia, but the symptoms could be mistaken for
something else, and of course when you're that age, it's
probably not at the top of.
Speaker 2 (06:33):
The list, no, I think. But so my sister and
I both live in Altata and New Zealand, and my
brother at the time was living in the Caribbean. We
were all born in London but have all fled that
nest and so we weren't seeing him regularly either, and
when we did see him, I just thought he didn't
(06:55):
remember stuff, which seems odd now, you know now when
you look at it through that retrospective lens. I mean
I literally just thought, oh, he doesn't seem to remember
things any longer. But he was forty, so from sort
of forty six roughly, I'm thinking onwards, it's just odd
he didn't remember family memories like we did.
Speaker 1 (07:16):
So long ago memories, not recent memories.
Speaker 2 (07:20):
Yeah, long ago memories. So when we three would get
together as you do hysterically, you know, talk about your
ridiculous past as kids together, Esther and I would be
laughing about a particular memory, and he would just shrug
his shoulders and honestly pretend not to remember. Was what
we used to think. We just thought maybe he just
(07:42):
wasn't that now they were, you know, larking around in
your twenties kind of anecdotes. So and then we'd go
when we come back to New Zealand, and we get
on with it, and we just sort of just never
occurred to me that he might have dementia so young.
Speaker 3 (07:58):
So his immediate family around, when did they realize that
there was something wrong that they did need to address.
Speaker 2 (08:05):
So Caroline, my beautiful, amazing sister in law, obviously was
becoming concerned. And this is a few years ago now,
so my timeline is pretty sketchy, but I know around
they've got four beautiful children, and around the birth of
the last of those gorgeous Blatter family for four of them,
(08:32):
when Emily was born, my brother didn't react like he
had you know, it just was different. So at that
point she moved. They moved the family back from the Caribbean,
where they had been living that incredible yachting life with
four children, sometimes on a boat, so they were, you know,
(08:52):
big sailors. She moved them back to England, and I
think it was because she knew that she needed help
and they needed to find some kind of diagnosis. And
so I can't really remember how quickly all that happened.
I do know when I was told, and that was
post quakes. So I'm going to pick something around like
(09:14):
twenty eleven, twenty twelve, and I remember sitting outside of
my son's basketball match and I must have just got
the text, and it was freezing cold winter and I
sat outside in the car and read this message and
just cried and just thought, I, you know, my brother,
(09:36):
what's everything to me? When I was a little girl?
And I haven't I don't cry much about him, but
that was the moment that I really really cried.
Speaker 3 (09:48):
It was a BFT, as you call them. Yeah, I
love that expression. Tell us what that means?
Speaker 2 (09:54):
Am I allowed to swear? So Finny and Henry my
nephew from my sister's second child, And I'm not going
to go through the anecdote, don't worry Finn as when
he was quite young did say to her, It's a
bloody fucking thing, isn't it, mummy? And so in our family,
in my particular side of the family, we have short
(10:15):
had that to a BFT. And my new book is
about you know, what do you do when someone lands
a BFT fairly and squarely in your world? And how
on earth do you come back from that? So, yeah,
so that was We've had a few bfts in our
family and my brother's loss and then watching the decline
(10:39):
over the fifteen years. Rough I'm making that up, but
you know, my timeline since was really tough. Losing him,
you know, visit by visit really tough.
Speaker 1 (10:53):
Yeah, I can imagine. And I think that is one
of the things that with demeta, any type of diagnosi,
the dementia, which must be so hard because you must
be their sense of relishing them now, but watching them
decline in terms of, you know, in terms of the
memory and the memory of you and things that you join,
(11:14):
things that you can share, and the things that make
your family. Were you able to talk to him about
the consequences of his illness while before he declined further?
Speaker 2 (11:24):
No, we never did, And in truth, I don't know
how much Caroline did either. I just don't know that
from not being from being absent. But no, we never did.
I'm pretty certain on that that my job is to
accept him and love him. And so that was easy,
you know. I would turn up and fly in and
(11:46):
get on the bus and turn up at their house
and just be there as another pair of hands and
a big open heart. And that was all you can do.
And towards the end, he didn't know who Estra and
I were, but we know who he is and we
would take We had a I don't know how long
(12:07):
five days with him the year before he went into
a home and with a lot of lack of judgment,
and caring. He's still a brother. I mean, he was
naughty and frustrating and a pain in the ass, but
that's the illness that's not him.
Speaker 1 (12:25):
Yeah, And universally when I've spoken to people, that is
what they've seen to me. Is it well, it's dead
or it's still mum, you know, and that's still the year.
Speaker 2 (12:34):
Yeah. You have to suspend the judgment because I think
you know, the thing is there. I don't want to romanticize,
particularly FTD, because being young he was physically strong and able,
and emotionally and mentally not there completely changed and so
he found it frustrating. I remember one visit where he'd
(12:58):
just been just like his driving license. In fact, I
remember a visit before that when he hadn't lost his
driving license, and it was terrifying him driving around and
he was loose and loud music and you know, oh,
I can't actually remember particularly, but I remember thinking that
this is not fun. And then the next time I
went back he'd lost his license rightly, and he was
(13:20):
so frustrated because there they are in the family home
with four children who then were I'm you know, kind
of primary and secondary school age. So many school runs,
so much need to have another driver in the family,
and he just wasn't allowed to drive, and so he'd
be cross, he'd be furious and that lack of independence,
(13:42):
watching that him lose that and he doesn't understand why.
So he was Yeah, he was hard tough.
Speaker 3 (13:51):
I have to ask and please, you know, if you don't,
you can share as much or as little as you
like about Caroline's life, because I you know, I understand
it's whose but how did she cope?
Speaker 2 (14:02):
Caroline is a saint.
Speaker 3 (14:04):
Four young children in dealing with, you know, a husband.
Speaker 2 (14:07):
And so Caroline, Caroline and I went to school together
and she is just one of life's amazing people. And
she was a physio and she would say if she
was here now, it is her. It is the physio
(14:28):
in her, the care in her that enabled her to
cope and care for him. That that is you know
those vocational careers find you, don't they There was a
reason she was a physio, and there was a reason
she was so amazing at caring for him. And she
cared for him obviously right to the end of you know,
(14:51):
loving wife. But more than that, she kept him at
home for so long because she didn't want to let
him go into a home, and she knew the homes
would be hard for him because he's so physically able,
because he get himself in trouble by being physically able.
You know, those residential care facilities are designed for frail
(15:15):
elderly people. My brother was still playing ferocious tennis until
very shortly before he went into the home, playing it
badly and naughtily and lying about ball calls. So, you know,
shout out to the tennis club who tolerated him, and
he was you know, he'd swear and say inappropriate things
(15:37):
and just make up the rules as he went, but
that's community care, and they did let him keep playing.
So yeah, So Caroline amazing and was exhausted. I mean, yeah,
so that's it's a big Oh.
Speaker 3 (15:53):
It's just a definition of love there. What you've described
of her commitment to her, that's beautiful. What was it
like for you then, as you said, you know, when
you would arrive, you would go in and said, you know,
no judgment, I just need to be a supporting help
of Hancy. But I am sure, and this is the
case for a lot of people in friends of ours,
you know, whose parents have been in the situation when
(16:14):
there are siblings living overseas, and they come. But obviously
you get a shock. Obviously you can be surprised at
the decline, and it's you know, how you manage that
is quite important when it comes to supporting the people
who are doing that day to day care.
Speaker 2 (16:29):
Isn't it. Yes, it's I guess how we respond is
comes from so many aspects of our lives. And we've
had a number of losses throughout our lifetime, and both
death losses and living losses, and so I would actually
honestly say that I was less shocked because shit happens
(16:51):
to us as a family, and we know that, and
I know that in my bones. And actually, you know,
the first thing I talk about in my TED talk
is that suffer and struggle are part of life. And
the quicker you understand that, and the deeper you understand
that truly in your bones, it stops you from feeling
singled out and discriminated against when something happens. So it
(17:15):
stops the shock and accelerates the acceptance. I think in
many ways, I wouldn't be shocked by what I've found
in him. My job is just to love him, and
I would be sad sometimes, but I think when you
are caring for someone who is so we talk about
ambiguous loss, where the person is very much physically there
(17:41):
but emotionally and cognitively gone. So in that sense, would
I think our role is to meet them where they're at.
And so Andrew likes singing, she is, I believe, pretty
common with FTD. We always liked singing as a family,
so we just sung everywhere. And I think since my
(18:02):
grandmother died when I was young, like thirteen or something,
we've had a lot of tears in our family, so
we're also really not embarrassed about crying. So we would
walk around where they live in England. We would walk
around the country lanes, walk the dogs, sing loudly while
playing his iPhone, and Jimmy Buffett and Neil Diamond and
(18:24):
Elton John I would and I just think, well, I
don't really give a toss that that's what we're doing,
because this is what he wants to do, and I'm
meeting him where I'm at. And we would laugh and
cry and he would hold onto my arm and because
otherwise he'd walk out into traffic. So I look back
on it as lucky times I got to spend with
him because that's the distance thing. You don't get to
(18:46):
be there.
Speaker 1 (18:48):
Yeah, yeah, no, I've got a preparation for this. I
spoke with a friend who said that one of the
things that when she goes to see her mother, she
takes it a pack and gets the mum, gets on
a swing and she swings here for a lot this
because that is what her mother wants to do, and
she gets an inane amount of joy out of it. Well,
they both do, you know, And so I was surprised.
(19:09):
I was, you know, expecting more kind of oh, you know,
the trenches the grief are saying is the difficulty, but
there's so much unexpect a joy. Is that for you
to say?
Speaker 2 (19:21):
It's such a funny thing to say, honestly, lou Because
so I work with helping people cope with all kinds
of loss, whether that is a death, bereatment, or a
living loss. And I do quite a lot on social
media because I care about changing how we approach grief
and loss, and so social media is a great platform
(19:42):
for me to for me to be able to do that.
I care about boosting grief literacy. So I did a
post about two years ago where I'd just been in
Sydney with a bunch of high flying real estate people
and we'd run a panel on their living losses. And
I was walking through Sydney Airport and I did this,
you know, ridiculous reel saying, Oh, it just gives me
(20:04):
joy doing this work. And then I sat on the
plane thinking, did I just say that doing all this
grief work gives me joy? And oh my god, I'm
going to be completely slated for that. And then I
sat there because I was on a plane pre Wi
FI days, and just thought, actually, you need to own that,
because letting people talk about their losses, giving them the space,
(20:28):
the scaffolding, the opportunity to talk about grief, making this
world less grief phobic, grief awkward, making the whole topic
less taboo, does give me joy because people are desperate
to be able to talk about these things, and there
are moments of joy and pride and beauty even in
(20:55):
the darkest times of our lives. And I think that
as a researcher, I understand that because I understand that
we have positive emotions for a reason, and particularly when
you're going through really tough stuff and the negative, challenging
emotions abound. Then it is part of this incredible adaptive
(21:18):
process that we have as humans, that it is in
our DNA to punctuate those challenging emotions with good moments
and good experience, you know, we come up for air essentially.
And the prevailing grief theory nowadays is something called oscillation theory,
where what researchers have noticed is that it is both
(21:42):
typical and healthy to approach your loss and do all
that crying and grieving and experience the hard emotions, and
then to withdraw and disengage and go and do things
that actually do make you laugh and make you feel good.
And this oscillation, this ebb and flow backwards and forwards
(22:03):
between immersing yourself and the sorrow and then avoiding the
sorrow is really healthy.
Speaker 3 (22:10):
So then that would be really useful for someone who
is caring for a close family member at the moment
with dementia. It's that whole Yep, you're there, and you
feel obliged to be there, you know.
Speaker 2 (22:22):
Quite a lot.
Speaker 3 (22:22):
But actually it's also absolutely fine for you to steep
away and for you to go and take a break
and take a moment and find that joy for you.
And that's a really great coping great coping strategy, and
not to feel guilty about it, and not to.
Speaker 2 (22:38):
Quash your desire to want to take a break and
do other things and to feel a bit of one
of the you know where I work with ten positive
emotions in my work, so that's or a w E.
I'm not going to list them all, but basically I
have to spell out all because otherwise everybody wor says
(23:00):
so or and hope and inspiration and love and humor
and curiosity, all of those things, you know, finding those
things and sprinkling them across your life, particularly when you
are going through a long endurance struggle, this kind of
(23:23):
chronic illness. That really does I think people underestimate chronic loss,
chronic sorrow, and how devastating and exhausting debilitating that is.
Speaker 1 (23:37):
That's the thing I guess about dementia and everything under
the dementia umbrella is that it doesn't have a For example,
as opposed to a cancer diagnosis, where you go through treatment.
It might be long and grueling, but you most often
statistics would say that you do come out the other side.
Sometimes obviously you don't, or you die later. But with dementia,
(23:58):
it's only going to get. It's I don't want to
say worse, but it's only going to get more different
and more far away from the person that you once knew.
But you've got to go along with it.
Speaker 2 (24:09):
Yeah, totally. And so technically it's called a non finite loss,
and that is one of the things, one of just
one of the aspects that make it so exhausting. You
don't know how long it's going to last, you don't
know how quickly the demise is going to occur, you
don't know what's ahead. And then on top of that,
(24:32):
there are all those other aspects, both tangible losses and intangible.
And the tangible ones are your income, you know, your routines,
the driver's license, those kind of things, and your role
as in my case you know his role as a
father and husband, but Erna too. And then the intangible
(24:55):
ones are the companionship, your identity, the memories, all of
those things. So it just has so many complex aspects,
additional aspects compared to a death bereavement, which is you
know final and happens and you're there, But that process
(25:17):
of building up to and never really knowing what's going
to happen is I think extra additionally, so much harder
because you have all of these losses daily, really and weekly.
Speaker 3 (25:31):
Well, if we've learned anything post covid as, we're not
good at uncertainty, are we.
Speaker 2 (25:35):
No, we don't like uncertainty humans, although oddly we can
cope with it, but we don't enjoy coping. We like
predictable things. So one of the things I've written about
in my new book is islands of certainty, which comes
from Pauline Boss's work, and when you're facing uncertainty, she
(25:58):
says that it's really helpful to have your islands of certainty,
the people, the places, the practices, the possessions that you
can hang on to. And I add possessions because I'm
sitting here, you know, surrounded by bits that are abby
and are my brother on my necklace. I've got a
little a and it wasn't till I've had it there
(26:22):
since twenty twelve. And I'm doing the Coast to coast
a couple of years ago, don't ask me. And I
was finishing the run and I was well stumbling along,
not really running, and I was holding on to my
little A, and then I suddenly thought, Wow, I've lost
my brother Andrew abby, my daughter and my mum.
Speaker 4 (26:40):
Ann.
Speaker 2 (26:41):
I was like, whoa, they're all here, my a's But so,
you know, those talisman possessions. Your islands of certainty can
be places where, if you are faced with so many uncertainties,
places to go to. It might be a park bench
where you us can feel kind of grounded and catch
(27:03):
your breath. It can be people, of course, but it
can be practices. And that might be I try and
use the Daily Calm Meditation app. I'm going to be
pretty honest, and I'm pretty crap at it, but I
you know, when I'm feeling more stressed, I tend to
use it more actually, and they have great three minute meditation.
(27:25):
So it might be a practice such as that, but
it might be putting on your ug boots in the
evening and your morning coffee or getting out for a
walk in the morning. You know, all of these very
daily practices and routines and ways of thinking, acting and
being are actually what enables us to code.
Speaker 1 (27:43):
Yeah, that's interesting even that you say that when I
went through an illness and there was this one mug,
you know, and that one mug was the one certain
thing I was going to hear my fist cup of
tea out of in the morning, and that one mug
just get it still does and I look at it,
and the one I don't know. I don't know why.
And my son often says he's in Canterbury, but he'll
(28:04):
often say, oh, I need to get back to the rock,
and we're like, what's the rock? Oh, well, you guys home.
I need to go back and I need to touch
the rock. So I guess that's you know it is.
I love that islands and islands of certain of certainty
and a sea of uncertainty.
Speaker 2 (28:20):
Exactly that, exactly well, said Lucy.
Speaker 3 (28:24):
There's a couple of things you mentioned that I want
to pick up on. One was the coast to coast
because we're trail runner, so I was like, what, Oh
my goodness, this is fascinating. But that's a whole other podcast.
You mentioned just how complex this situation is, and I
think that's really great for people who are in the
middle of this at the moment, the supporters, the cares,
(28:44):
just to have that acknowledgment that it is really complicated.
One of the things which I know causes an awful
lot of stress is knowing the right moment to put
a family member or a loved one into care that
it's no longer there, no longer able to really give
that person the key that they need, and it's time
to make that move. And that is a really hard
(29:04):
decision to make without there being a lot of guilt
and I don't know, maybe anger and sadness and various
other things.
Speaker 2 (29:13):
And in my own family context, I'm not qualified to
talk about that, And I would never do that to
Caroline because that is her family and their decision, and
I know how terrible it was for her, devastating for
all of them, so I do I can acknowledge, of course,
(29:35):
I know that bit that it's terrible that moment for people,
and you don't know how long it's going to be,
and there are so many complexities around that, and all
I would say is that is the time to dial
up the self compassion that to be real, not perfect,
and there's no perfect moment, and there's probably no perfect
(29:59):
place either, and no perfect process. You know, you're in
really messy territory then, And not only as humans do
we not like uncertainty, but we don't like messy things
that we can't control either. So my huge respect to
(30:19):
anybody who has been faced with that decision, And really,
all I feel qualified to say to you is go
easy on yourself, because there's no perfect moment, time, or
way to do that. But I think, as is the
case in any big decisions in our life, all we
can do is trust our gut and then be kind
(30:42):
to ourselves that we did the best we could, you know,
with what we knew at the time. So, yeah, that's
such a tough one.
Speaker 1 (30:53):
It's interesting because of the nature of dementia. Obviously there's
lots of little things lost along the way or end
or gained, but these also the big moments, like the
decision to not be able to keep for them at
home any longer, and then ultimately they pass pass away.
(31:15):
And I guess I don't know how much time you
can eat energy, you can even give that while you're
in it, because again that's another if TD seems to
have a quicker time between diagnosis and passing.
Speaker 2 (31:27):
Or I don't know, Actually I'm really not qualified to know.
Andrew was yeah, sort of seven or eight years. It's
a terrible thing. As his sister, I don't even know
how old he was when he died, But it didn't
feel quick and it's that unknown, you know, it's that
living in limbo when you just don't know how long
(31:50):
it's going to be. And when he was such a big, strong,
healthy bloke And that's funny, isn't it nice think of
him as a bloke the English kind of phrase for
what he was. So yeah, so so hard trying to
predict that, and then lived through the just not knowing.
Speaker 1 (32:13):
Again. You know, I guess that's we use your islands
of certainty, but it mustn't feel like it at the time.
Just must feel like I guess even ternity, yeah, tunity
and also maybe a blir.
Speaker 2 (32:24):
Yeah, and that I remember right at the beginning, Caroline
said to us that one of the many challenges of
FTD was that it was acknowledged that it kind of
happened in that period where for a man in particular,
they were likely to be the key bread winner. You've
got teenage children in the house, and you know those
(32:47):
two things are additional losses. And for the teenage children,
you know, it's tough to have an awkward, challenging dad around,
tough for your friends, tough for you, really tough for
your social life. You don't want dad turning up at
school at the parent teaching meetings and the assemblies and
(33:08):
things like that, but of course you do so just
extra tough, I think in terms of family dynamics.
Speaker 3 (33:16):
Lucy, I can't thank you enough for sharing with us today,
really appreciate it. I've had a cry throughout this session.
Thank you for sharing your story and also just for
those lovely little glimmers of wisdom and hope that you've
given us to how we can.
Speaker 1 (33:33):
I can totally see how you get joy out of
what you do. Yes, and we're so lucky that you're
doing it.
Speaker 2 (33:40):
Thank you. I think everything has taught me lived experience
and all the research has just taught me to embrace
all of life. You know, it's ups and its downs,
and know that it's far from perfect. And I just
seem to have this phrase in my head all the time,
that's seeing my new book. How will I ever get
(34:03):
through this book that just says all of it, you know,
where somehow have to accept all of it And that
doesn't mean it's easy or fun or what we asked for.
But life's a lot.
Speaker 1 (34:17):
Hey, Oh my goodness. Yes, and I'm so glad you've
landed on that title because I think you know I
can just see it, you know, I can see people
going That's exactly what I need right now.
Speaker 2 (34:26):
And the good news is, you know, I can tell
you from a research perspective that people do get through it.
So that is I think what I enjoy most is
giving people hope and belief that they somehow can get
through whatever it is with grace and compassion.
Speaker 1 (34:41):
And evidence based research, which we love as well.
Speaker 2 (34:43):
Yeah, we do.
Speaker 1 (34:45):
Thank you so much.
Speaker 2 (34:46):
Thanks for inviting me, and thanks for everything you do
and all your listeners. You know, look after yourself.
Speaker 3 (34:51):
You're listening to the little things. That was doctor Lucy Hone,
author of Resilient Grieving, talking about the emotional toll of
supporting a loved one with dementia. Lucy also mentioned her
new book on this topic. It's coming. It is called
How Will I Ever Get Through This? It'll be in
stores early February. Up next, Helen Frank from Alzheimer's New
Zealand joins us with some practical advice for families navigating
(35:11):
a dementia diagnosis, where to get help and what support
is available.
Speaker 2 (35:15):
Back soon.
Speaker 3 (35:30):
Welcome back.
Speaker 2 (35:31):
So we've talked.
Speaker 3 (35:32):
Through the emotional and personal toll of a dementia diagnosis,
But we also want to give you some practical advice,
whether you have concerns a loved one may have dementia,
or you already have a diagnosis and you don't know
what's next or where to get support. So joining us
next is the manager of Alzheimer's Tartanaki, Helen Frank. Thank
you so much for your time, Helenly, Good morning.
Speaker 1 (35:53):
Helen, Thanks so much. Look, even though we know there
are many types of dementia, are there universal signs we
could all benefit from being familiar with?
Speaker 4 (36:02):
Yes, I mean, I think the first thing people think
of when they think of dementia or Olzummer's is memory loss.
And certainly that short term memory is significantly affected. So
we all have times when we walk in a roam
and we forget what we walked in for right, that
happens to everybody. For people well to dementia, that is
happening regularly, like every day, and things like conversations you've
(36:26):
just had are forgotten, or you know, they're asking questions
that they've asked repeated times. So yeah, that memory loss
is really quite significant, and they might have difficulty of
performing regular daily tasks that they've always done, they suddenly
have trouble with it, or they might find that they
have lots of problems with language or finding the right words,
(36:49):
and that that's it. So it's more than just the
occasional time that's happening, which I think everybody says, oh,
you know, that happens to me, But it's a daily
occurrence when these things are happening, and some people notice
changes to their mood and their personality and their behaviors.
So it's I mean, it's affecting the whole brain. So
(37:09):
it can cause a range of symptoms depending on whereabouts
their dementia is starting on what type of dementia it is.
But generally, what we would say is that if you
feel like you're having some kind of cognitive issues, are
you you're feeling like it's really getting hard to process things,
or you're feeling quite disorientated at times, you know, traveling
a regular route and you suddenly don't know where you are,
(37:30):
that that is the sign that something could be going on,
and really you need to go and seek medical attention.
You need to go to your GP.
Speaker 3 (37:37):
If we suspect someone is becoming impacted by cognitive decline,
how do you approach it. What's the best way to
approach it?
Speaker 4 (37:45):
Oh, that's a tricky one. And it is still so
much stigma around, right, this is I don't quite know
why there's that fear of you know, if people think
that I've got something wrong with me and I can't
actually manage things, that something's going to happen. You know,
there's that there's terrible fear and stigma that goes along
with dementia and punitive decline. So I think that's always
(38:07):
and it often becomes this big elephant in the room
that everybody's kind of tiptoeing around not knowing how to address.
And I think sometimes it's for the person who's experienced it.
They often know that there's something going on themselves, right,
So I think sometimes it is just pecking your time,
pecking making sure it's the right person in the family.
If you've numerous people have noticed changes, it's like who
(38:30):
might be the best person to approach this? So who
might this person listen to? And it's doing it in
a really kind of gentle way of sitting them down,
making a coffee and just saying, look, we've noticed that
you're getting a little bit forgetful or so if this
has changed, or you seem to be feeling you seem
to be getting a bit withdrawn or whatever it might be,
and just seeing if they've noticed it and checking that
(38:51):
out and then saying, how's about we go and see
your GP together. You know, sometimes that having broaching that
subject with the GP on their own can be really daunting.
So maybe why don't we go and see them together.
Why don't we book an appointment and we'll go together,
Or why don't we have a chat with the practice
news and see what she thinks. Yeah, so it's kind
of broaching it that way if you can.
Speaker 1 (39:12):
So, like a lot of things, GP is your first
port of call.
Speaker 4 (39:16):
Yes, we always advise that because the early signs could
be something else, you know, So it's making sure that
you go to the GP so they can do a
good examination, take a history, do bloods and things like that,
and just check there's nothing else going on, because sometimes
things like depression, it occurs in older age, just as
(39:37):
occurs in middle age and younger age, you know, and
depression itself can cause and impact some cognitive issue, cause
qugnitive issues, but that can be simply fixed with an antidepressant.
So we'll always say go to the GP first, have
that discussion and they can rule other things out that
might be simply solved, or they can say well we
(39:59):
think dementia and this is what the process is.
Speaker 3 (40:02):
Yeah, and then Helen, as they do have concerns that
it's dementia, do they do the diagnosis? Does your GP
do a diagnosis for you?
Speaker 4 (40:10):
Yes? Generally in New Zealand, the GPS and primary care
practices would handle a dementia diagnosis if it's straightforward. If
there's something more complex going on, so if the person's
got some kind of physical issues going on, or they're
under sixty five for example, and very young, then they
(40:31):
they might refer them to the specialist services at the
hospital and do things like scans and things to see
if something's going on. But generally it's handled through the
GP and it's just a case of managing it that way.
Speaker 1 (40:44):
So you've got your diagnosis, what happens next, what should
people expect?
Speaker 4 (40:49):
That's the thing that does differ depending on where you live.
So here I can tell you what happens here in Taranaki.
So ideally what they would do is, you know, kind
of talk to them around this is what it means
this is how it might impact you, and this is
an organization that might be able to help, and they
might point them in our direction and refew to us.
(41:12):
And here are Alzheimer's Tallanaki. We have community advisors, community
workers who can walk alongside that person, so my worker
would go out and visit them, would bring us some
information and advice and offer education. We do education sessions
here on a monthly basis for families and people have
been newly diagnosed. And then we have things like support
(41:34):
groups for carers. We have you know, activity groups and
things like book group and we have a day respite
program here for people who are further on in their journey.
So yeah, we've we've got a range of services, but
that's not necessarily available everywhere, depending on where you are.
But there are lots of resources online, so things like
the Alzeimer's using a website has fantastic resources. And I
(41:57):
would always say to people, you know, although it's frightening,
if you can equip yourself with information and knowledge that
gives you, then power doesn't it. If you have the knowledge,
then it just will allow you to choose and have
a bit more choice. And what happens for you.
Speaker 3 (42:17):
You're so right, Helen. You know, there's nothing worse than
you get a diagnosis and then you walk out of
a doctor's surgery and you just sort of find yourself
standing there going what do I do?
Speaker 2 (42:28):
Right?
Speaker 3 (42:28):
Okay? Do I just get on? So knowing that you've
got this port of call to start, you know, this
place to start and sort of you know, work out
what services are available and things to you. Is the
information there? You mentioned that there is a care support
group as well, which I think must be really important.
Is there lots of information there and advice as to
(42:49):
how to care for someone with dementia as well.
Speaker 4 (42:52):
If you've got access to a computer, there's lots of
stuff out there in it and lots of information. And
for us, the care of support groups are integrable to
what we do because it's around supporting the careers to
do the caring. You know, they're they're the the amount
of unpaid care that's set out in New Zealand. You
know a majority of people wis dementia are being managed
in their own homes in the community and being supported
(43:13):
to live well. But that to do that, it relies
on the careers. Though the unpaid careers, the family, the
fano you know, who are living with them, and for us,
the care support groups are around that peer support. So
you're you're you're you're kind of sharing and problem solving
with people who are on the same journey who understand
(43:36):
what you're going through. Yes, it's different for everybody and
there's different nuances to everything, but you've still got people
who yet go, oh, yeah, that happens to my mom
or that happens to my husband. You know that's what
works for you. Oh this works for me, Okay, well
I'll try that. You know. It's it's that kind of
common sharing and I just think we can't understate the
power in that it really is and beneficial.
Speaker 1 (43:58):
Sabb It for me. Do know overly promotes social media,
but a friend of mine told me that Facebook groups
were hugely helpful for her. Yes, and then you probably
are talking to people from all over the country as.
Speaker 4 (44:10):
Well, exactly, Yeah, so I know it certainly. The Young
Onset Service is that YODA in Wellington. They do online
care groups as well for people who are going through that,
and they can connect people all through the through the country.
Speaker 1 (44:23):
So yeah, so you sort of mentioned it's different around
the country and surprise, surprise, it's a bit of a
postcode lottery. We've heard that before. Do you need to
be a squeaky wheel?
Speaker 4 (44:35):
Sometimes yes, and I do think that it can be
hard certainly. I mean, obviously dementia is the longer we live,
the older we get, the more chance of getting demensia. Right,
so there's more cases of dementia. And those people who
are older and that older generation generally don't like being
the squeaky wheel. So it's often the husband will manage
(44:57):
things and cope as best you can for as long
as possible, muddling through, and then things get really bad
and then it comes to the attention and they start
to say, you know, or the one of the kid's
visits from overseas and goes, oh my goodness, I don't
know how you've managed so long like this, you know.
But yeah, so it does sometimes require the care to
(45:17):
be the squeak will and to actually go back and
say we need this, help them, this is.
Speaker 2 (45:22):
What we need, helen.
Speaker 3 (45:24):
When do we know someone is ready for care outside
the home?
Speaker 4 (45:29):
That's a really difficult I.
Speaker 3 (45:31):
Know, I know, and it would different for everybody, and
those very different. Maybe the signs or the situations that
you might find yourself and will you need to start
thinking about maybe getting some care for for a love.
Speaker 4 (45:45):
One for for me. It boils down to safety if
that person's safety is being severely impacted. So if they're
getting up frequently during the night and they're wandering around,
going outside looking for somebody, and they're dressing gown or
you know that kind of thing where they could actually
come to heart from what's going on for them, or
(46:05):
if they're leading the pod on the stove to the
point where it's it's you know, smoking and the neighbors
call the fiber gate, you know that kind of thing. Unfortunately,
that is quite a common occurrence. So it's you know,
we can't say and we never say to people you've
got to put mine kit. You know, that's not our job.
It's not our job to say you should be doing this.
(46:27):
It's our job to point out the options and to
say this is this is you know that you can
get assessments through the through the GP. So if things
are changing significantly like that, what we would be telling
people to do would be asking your GP to get
you a NASK assessment. So it needs assessment and that's
done through the hospital team, and they can put in
a package of care to the home so they can
(46:49):
get the home supports them to come and help with
cooking and cleaning and that kind of thing, and showering.
But that only works to a point, right because you
know they could put people in three times a day.
But if mum's getting up at two o'clock in the
morning and wandering around in the street, that is probably
the point where things will fall over. And that's when
(47:11):
you start looking at kind of residential care.
Speaker 3 (47:13):
That's really good to know though there are there are
things that you can do in between there, which is great.
Speaker 1 (47:19):
I've heard there's a long wait for a NASK assessment.
Is it correct or it.
Speaker 4 (47:23):
Can be very so I think here in Tallanaki it's
not too bad. There's a bit of a weight, but
it's certainly more than they used to be. But I
know in some parts of the motto it was up
to six months, which is really shocking. You know, if
you've got somebody who needs that kind of care now,
waiting six months for it is not really an option.
Speaker 1 (47:42):
Well, with the rate predicted to rise, that's a bit
of a better. Yeah, we need to be the ambulance
at the top of the cliff, don't we. Do you
have one critical piece of advice? I mean, you've given
us lots of good tips this morning, but do you
have any great piece of advice of people caring for
a one with dementia?
Speaker 4 (48:01):
Oh? I think for me, it's being kind to yourself
and looking after yourself. You know, caring for someone with
dementia is a really tough job, and it's it's a
privilege and an honor for many people, but it's still
it's tough, and I think there's a whole lot of
guilt that goes with those decisions around having to put
(48:23):
cares in the home or having to put their gloved
on into care. And I think if you can free
yourself with a bit of that, you know. So, yes,
it might be the mom's goal is to stay at
home for as long as possible, or we will do that,
We will do our best to maintain that, but there
might come a point where something has to change and
you don't have to have those conversations straight away, but
it's something around kind of talking to other people around that,
(48:46):
so you're sharing that with others so you don't feel
like you're carrying all yourself because that's a lot.
Speaker 3 (48:52):
Yeah, Helen Frank, thank you so much for your time
and for all your amazing work.
Speaker 4 (48:57):
Thanks very much.
Speaker 1 (48:58):
You guys are just thank you so much. Awesome.
Speaker 3 (49:13):
I have so much respect for Lucy and what she does,
and I just think it's an absolutely beautiful thing that
she is trying to achieve when she just talks about
we need to approach grief differently, whether it's the loss
of a loved one someone has died, or whether it's
this ambiguous loss, whether it's this period of uncertainty that
(49:34):
we go through, you know, while we we.
Speaker 1 (49:37):
Care for someone who's when a BFT happens. I love
that bloody fucking thing. It's going to come up.
Speaker 2 (49:43):
All that's going to kind of come a lot.
Speaker 3 (49:44):
Take that one, people and use it. Just even saying it,
I think when things go wrong will make you feel better,
but not. I just have a huge amount of respect
and admiration for what she is trying to achieve. And
I just I really hope that what we spoke about today,
if there is someone out there who is about is
venturing into this world of looking after a loved one
with dementia or is in the process of it or
(50:06):
has done it. I just hope they really do take
to heart you've done the best that you could, and
that there is no right or wrong way. There is
no perfect way.
Speaker 2 (50:13):
To go about this.
Speaker 3 (50:14):
It is hard, it is filled with complexities, and you
can just sort of take one step at a time.
And I hope that people find the islands of certainty. Actually,
I just think islands of certainty is something we should
use everything.
Speaker 1 (50:25):
Every time, absolutely, And also just that meeting them where
they are, and my conversations with my friend as well,
that came up a lot. It's not about you, you know,
don't visit them with no expectation on any given day.
And I wonder about how much I do that in
my everyday life with people who don't have dementia. But
just go with an open heart and open mind and
(50:47):
whatever is there on the day, you just meet it there.
Speaker 3 (50:50):
The one thing that I've noticed when friends and family
have spoken about a loved one with dementia is that
it can be quite a different experience. For that person
can be quite a happy existence, right, and for others
it can be really truly difficult, and you know, they
(51:12):
can be very angry and their their their personality and
their mood changes so much and it can be very difficult.
So everyone's going to have a different experience. And that
was the other thing I yet that you know, you
need to take from from what Lucy was speaking about.
Speaker 1 (51:27):
And that could it's all going to be unique and
it's day to day, that's right, And I think that
I think that some from what I understand under again
the dementia umbrella. There are so many different types, and
you know, they have their own attributes and some of
them do have you have more of an issue with
anger and frustration, and some of them just seem to
(51:49):
be filled with a little bit more joy. I don't
know why. I don't know.
Speaker 3 (51:54):
Bring on that self compassion. Don't hold back on that.
I know that we talked about. You know when people
talk about self care and I'm like, who's got the time? Really, honestly,
you're just putting more pressure on us to look after ourselves.
But this is a moment where that self compression is
so important, isn't it right? Look, if you want to
hear more or get more information from Lucy, the book
we mentioned is Resilient Grieving. She is on Facebook and
(52:19):
Instagram at doctor Lucy Hone and she also has the
ted talk out Three Secrets of Resilient People.
Speaker 2 (52:27):
So there you go.
Speaker 3 (52:27):
There's some tools for you to enjoy.
Speaker 1 (52:30):
Francis, because anything happy happened in your way, happy or
happy or just brought you some joy or some calm.
Speaker 3 (52:36):
Do you know what? I'm just going to go back
to a podcast we did this season with doctor Carlie
Wilson talking about, you know, professional athletes and how we
can take some of the tools and trick sleats. She
was saying, and this comes back to the way we
speak to ourselves again, which I suppose kind of relates
a little to the self compassion we were just talking about,
you know how she said to me, Oh, no, no, no,
it's not should and I could or I you know,
(52:57):
don't talk like that. Is it helpful or unhelpful? Do
you know what this week I've you said, I've used
that quite often. I've stopped on God, this is helpful.
That was a very press went podcast. Not really, Oh
that was simple okay, change tag. So I just thought,
I just Danny, what though, it takes a bit of
work to make yourself change the way you might think
(53:19):
about something or the word the word absolute.
Speaker 2 (53:22):
I had had to be really conscious of it.
Speaker 3 (53:25):
It's not like these things this may just be mease,
These things don't come quickly and easily.
Speaker 2 (53:31):
I have to work it to word.
Speaker 1 (53:32):
Were talking to the master of Somebody has to get
over the head with something before it goes in. Oh,
that's that's great.
Speaker 2 (53:38):
I got a lot out of that.
Speaker 1 (53:38):
One too, actually, to be honest with you. But but
my joy thing this this week at least, was actually
speaking with my friend about this topic today, because it's
someone we go on our big hikes with and stuff,
but I don't you don't get that one on one
time with them. And I knew that was going on
in life, but I didn't know the details, and I
don't know, I guess. Just just speak with her and
(54:01):
her being so generous with her time with me really
hit home and brought a whole different perspective to it.
As I say, not bearing skittles by any stretch of
the imagination, but not all doom and gloomy.
Speaker 3 (54:14):
So are you suggesting here that maybe just reaching out
and talking to a friend occasionally and connecting with people
gives the joy noise.
Speaker 1 (54:20):
One hundred percent? It does maybe asking them about something
that's money. You think their life mentioned that a few
times too, but we'll just keep You're just getting working
over here with that one as well.
Speaker 2 (54:28):
I love it. I love it. Yes.
Speaker 3 (54:30):
Thank you to all our friends who shared their personal
experiences on this topic, and thank you for joining us
on our New Zealand hera podcast series, The Little Things.
We hope you share this podcast with the women in
your life so we can all better understand and support.
Speaker 2 (54:43):
Those with dementia.
Speaker 1 (54:44):
You can follow this podcast on iHeartRadio or wherever you
get your podcasts, and for more episodes from us on
other topics, head to zed Herald dot co dot
Speaker 3 (54:53):
Z and we'll catch you next time on the Little
Things
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