(Singing in Torres Strait Islander language)
Clicking sound
(Singing in Torres Strait Islander language)
It's very important to have the conversation
I think it's really important to talk about this stuff
It's very good and very important
to have that conversation
about palliative care.
Around our dinner table we talk about work, our life in general
It's just we talking about the old days when was little
Politics, state of the world
My son is into cars all the time it's like a twenty four hour conversation as well
Sport, sport is a big subject in our house
How we are going to build this, how we are going to pull that down
We never talk about dying
You don't, you don't speak about death, you don't expect to die unless you're old
But you know it's a funny thing the children they don't want to hear about that.
Why, I can't understand.
In our culture I guess it's very hard for us to talk about,
looking after someone who's dying around us because we're men.
I think you block a lot out of your mind because you just don't expect it to happen.
Probably not looking forward to the day but then again, who is?
And who isn't?
And who knows what's going to happen?
I was diagnosed with
with Motor Neurone disease in June last year, at the age of 47.
And he turns to mum and he says you've got Alzheimer's.
John,
he passed away.
To see your son lying, your child lying there in bed
not being able to do anything and you know and he's crying, he's upset.
I'm crying, I'm upset. We're asking that, why?
I understood palliative care as the last stages of someone's life
where they get to feel a bit supported and comfortable even though they know they're going to pass on.
I guess we'd spoken about it you know, on and off over the last you know,
twenty odd years that we've been married and sort of and I
maybe jokingly saying to Lisa I don't want to be a burden on anyone.
I don't want anyone to have to wipe my nose for me for the rest of my life.
Yes my daughter does know what I want
if anything happened to me and if she had to make that decision.
It's the last act, your last transition.
(Sigh)
Yes well I hope they don't start fighting over who's going to get my house and all that after I'm gone.
(Laughs)
(Speaks in Chinese)
My ma says she wont pass me any money, she only passes me love.
If it's ok with my children
well I would stay with them as well unless they couldn't look after me.
In Aboriginal culture we like to all stick together
I'm still at home.
(laughter)
Ma's thing if one day she was really sick she still want to choose the medication.
An advanced health care directive has a variety of elements to it
but one of the most important things is a directive to people around you
caring for you in the terminal phase of life about how you would like to be cared for.
For the individual an advanced health directive will protect you.
It will make sure that your wishes are honoured.
It helps the family, it helps to understand the process
and I firmly believe it gives dignity to the person who's dying.
When the time comes, you need to know what I feel comfortable with and what I wanted
instead of having to guess that
at a time when you are least able to do so, when emotions are running so high.
So if people don't have an advanced health directive I see a lot of conflict.
Lot of different ideas on what the individual would have wanted.
I want the people in my life to know what I want.
Palliative care is an approach to care which enables people to have good quality of life
even if they have a terminal illness.
So it goes right from the beginning of the diagnosis
to time of death.
It's not just about end of life it's, I've since found out that
you know a lot of Motor Neurone patients go into palliative care for little stints
like one week or two weeks to you know sometimes get their medications right and that sort of thing.
Palliative care they were there with me all the way they were just beautiful
(Singing in Torres Strait Islander language)
I don't like my children to dressed up all black and
start you know be unhappy because I'm gone.
Alright they miss me I know they going to miss me.
They going to miss my cooking,
look after the children you know, I know that yes but
I don't, I don't want them unhappy because I gone.
It's a natural process that we go through, you know
we were born we live and we die.
I have often said to my mob you know when I go, take me to my country.
When the time comes it doesn't matter if you're strong, rich.
I think its really important to have the conversation about palliative care.
Have your family there with you, so they understand what palliative care is as well.
Bravery in the face of adversity is just you know, it blows your mind sometimes.
(Singing in Torres Strait Islander language)