This transcript features Susan in conversation with Megan and Jason van Genderen from 'Everybody's Oma', sharing her experience of caring for her husband, Ron, as his dementia progressed and his care needs increased. Together, they discuss the challenges of being a partner and caregiver, the emotional decision to move a loved one into residential aged care, and the comfort that comes from knowing they are receiving the support they need. 

Introduction

00:00:04 | Jason van Genderen (Interviewer):
Hello. 

00:00:14 | Jason van Genderen (Interviewer):
Susan, thanks so much for making time to have a chat today.

I'd love you to introduce us to Ron as a person.

Tell me about him, his character. What's your memory of him? 

Tell us about Ron

00:00:30 | Susan:
He's always been a quiet person in crowds.

Then he'll start talking to the postman and people like that.

He's just one of those very caring, family-orientated people.

He'd do anything for the family.

We'll be married 53 years this year. 

00:00:47 | Jason van Genderen (Interviewer):
Wow. 

00:00:48 | Susan:
Yes, we've got a bit to go.

A long time.

He was one of those people who walked everywhere.

It was unbelievable that he then couldn't.

He's in a chair now.

He's really lost his mobility. 

Caring for Ron at home

00:01:06 | Jason van Genderen (Interviewer):
So it was getting to a point where physically it was becoming really difficult to look after him? 

00:01:09 | Susan:
It was.

I was showering him and doing everything.

Ron was getting up some nights at one o'clock in the morning to have a shower.

All those sorts of things just take it out of you.

It was hard. 

Finding the right care community

00:01:25 | Jason van Genderen (Interviewer):
Where's home for Ron? 

00:01:25 | Susan:
It's at Narraweena Grove. At Narraweena.

I just thought, "No, this is it."

It's just homely.

It's not a big concern.

I think you're lost when places are too big.

I just thought, "This is great."

The staff were lovely, and I think the staff make the place. 

The difference between caring for a parent and a partner

00:01:45 | Jason van Genderen (Interviewer):
It's one thing when our experience is seeing a parent go through dementia.

It must be an entirely different thing when it's your partner. 

00:01:56 | Susan:
It is.

It's really difficult. 

00:01:58 | Jason van Genderen (Interviewer):
How did you find the strength yourself? 

00:02:01 | Susan:
I don't know.

You do what you have to do.

I'm just one of those people who gets in and does what needs to be done.

Things are gradual.

It's not all one big calamity.

You just do what you have to do, and I did. 

From respite care to permanent care

00:02:18 | Megan van Genderen (Interviewer):
So Ron went into respite and then you made that permanent? 

00:02:22 | Susan:
Yes.

I couldn't look after him anymore because his mobility really declined.

It was incredible to see someone go from being so active, pacing around, going for walks and doing everything, to not walking at all. 

Knowing it was the right decision

00:02:39 | Jason van Genderen (Interviewer):
What sort of emotions were you feeling while he was in respite and you were having that time away from caring for him? 

00:02:44 | Susan:
I really just thought he needed to be there.

I can't do it anymore.

It comes to that point where you realise it's the best place for him.

He's being better looked after.

It's fair on him to be properly looked after rather than me struggling.

It's taken out of your hands really.

You think, "Yes, this is it. This is the right thing." 

Trusting others to care for someone you love

00:03:15 | Jason van Genderen (Interviewer):
It's tricky, isn't it? Because nobody knows Ron like you do. 

00:03:20 | Susan:
No. 

00:03:20 | Jason van Genderen (Interviewer):
And how do you transfer that information across to a care team? 

00:03:25 | Susan:
I know, that's right.

But I think they pick up on the whole situation of me being there with him.

As I said, he's got this lovely smile.

He talks with his eyes as well.

He rolls his eyes at them sometimes and then puts on this big grin.

They can sense what sort of person he is. 

Feeling supported

00:03:45 | Susan:
All the staff are just wonderful.

I'm so lucky to have them all.

I feel they're my friends now.

I go in and everyone's saying hello.

They're so welcoming. 

00:03:58 | Susan:
It's lovely.

It's lovely to feel that you've done the right thing.

And I feel that. 

Closing thoughts

00:04:05 | Megan van Genderen (Interviewer):
Thank you very much for letting us have a cup of tea with you and for sharing your story about Ron and your journey. 

00:04:12 | Susan:
If this little thing helps someone, it makes life so much easier.