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SEPTEMBER, 2017

Caring for the Carers
Sharing wisdom
Supporting families

Delia: I’d like to introduce Martina Clark, the founder of Carers Couch. Martina, welcome.

Martina: Hi, Delia. How are you?

Delia: I’m very well. Can you tell me a little bit about your work history, Martina.

Martina: Yes. My work history, it’s not straightforward.

I’m originally from Germany. I’ve been here for around 10 years. I’ve also lived in New Zealand and a little bit in Asia but most of the time I was in Melbourne. I have had various jobs in various industries so there’s nothing straightforward.

In the last six years I’ve been exposed to healthcare. I’ve worked for a pharmaceutical company involved with oncology products. I left that company last year to in a way find my path in the carer space. I was looking for ways to support the families and the carers of cancer patients.

That started the journey and why we are together today.

Delia: What actually triggered you creating Carers Couch?

Martina:  When I was working at the pharmaceutical company, my friend, Anola was the global study manager. As I don’t have family here, she was really close.

She moved back to Sydney 2013, was five months pregnant, then was diagnosed with lung cancer. That started of course her journey and also mine.

I made the decision to be part of her support network.

When she then passed in 2015, apart from the grieving process, it changed my life completely. I decided to dedicate myself to the unmet needs of carers, and I’ve left the company in 2016 to pretty much explore and learn from that journey I’ve just been through.

Delia: What does Carers Couch actually offer to people?

Martina: When I was on that journey, I met a lot of people like myself who have been in carers’ positions, and I saw that there’s a wealth of knowledge out there. There are a lot of great resources and information. But it’s quite disconnected.

I didn’t really find that one spot where you can go to and… receive practical and emotional support from real people, with real expertise and stories.

Because this journey is quite colourful, the people in it are colourful and quite diverse. None of the resources I’ve found have really reflected that, so that’s why I’ve chosen doing videos.

Delia: Who do you actually video on the website?

Martina: They vary. Either at the beginning of their journey or when they’ve already been caring for a while or in the survivorship phase when they have been … Either their loved one has passed away or got better.

Talking about their lived experiences, their tips, their tricks, the organisations and resources they’ve used supporting their journey.

Delia: Can you give us an idea of what are some of the issues that carers experience?

Martina: I think depending on the level of care, there is a wide range of challenges they’re facing. Again, it’s very personal and individual experience.

Fatigue or burnout or anxiety or financial challenges happen to everybody. The caring effects, they happen in different times to different places for different people. 

Overall, the caring role itself is very challenging. Even acknowledging their own situation, learning a vocabulary around expressing their (feelings), being allowed to admit that they’re not coping, for example, which could open up some ways for seeking for help.

It’s a very complex journey. It’s connected to guilt.

They don’t think it’s their place because they’re not the one with cancer. Also, they’re not knowing what’s actually out there for them.

I think right at the start, being acknowledged, and recognising the situation they are in… (is important).

Delia: Do you think that the current health system fully gives credit to and accepts the role of families and carers in the process of somebody being unwell?

Martina: Yes, I do think there is definitely the acceptance there… but it’s all around also resources that (can be) extend… to the families.

Part of the issue is also lack of collaboration. I find now institutions, they do great stuff in a way in isolation. Sometimes there is no (cooperation).

A lot of organisations… they develop this amazing product, but it’s in isolation. There’s no sharing. One institution also doesn’t know what the other institution does.  At the moment, I’m actually trying to connect those.

Delia: If I was a carer of somebody who is unwell, I could go to your website and see videos of other carers talking about their experiences. Is that the case?

Martina: Yes… I have a lot of inspiring people on the website. They have been hit by adversity. They had either cancer themselves or they have been a carer. 

People who have made.. great things (out of adversity). They saw opportunity in the challenges. Most of them came out of it okay and they’re happy to share that.  (And) they are happy to educate and inspire (others).

Delia: What has been your customers’ feedback? When people have gone to your website and seen these videos of people talking about the experience of being a carer, what have people said to you in response?

Martina: I think most of the time, I’m getting responses of, “I didn’t know that you existed”. 

I usually say, “Because I haven’t been around for that long.”

I get a lot of positive feedback… what strikes a chord… is the mixture of the factual and the emotional… there’s a good balance between that.

There is the realness about it and I think it gives people a sense of validation.

Delia: This is really an Australia first. I can’t think of any other site, where people can see actual videos of real carers, talking about their experiences, what it’s been like and share some of their personal journey.

Martina: I think one of the uniqueness is that it’s dedicated to cancer care.  I haven’t actually seen anything similar. 

Delia: You’re really using social media to show something unique, which is the personal and actual experience of real-life carers and what they’ve been through and what they see as everyday challenges.

Martina: Yeah, correct. I give people a platform to unlock their knowledge.

Delia: It sounds as though you’re opening up a dialogue with a part of unwell people that is normally kept secret. That is the world of families and the carer who’s at home. Behind every great man is a woman.

Well, behind every very sick patient, there’s a family. It sounds like you’re giving a voice to those people who have normally been in the shadows.

“There are currently 2.8 million unpaid carers in Australia”

Martina: Yes. You don’t actually realise that you are a carer. I think… it happens so rapidly and it’s so reactive that you don’t really have much time to see your role or what it actually is you’re doing.

I think it’s more an extension of love more than anything. 

You are as a supporter for that patient. You are in the shadows… you don’t even learn a language to express yourself.

I interview a lot of carers and most of the time, I would say to 80%, they’re giving me the experience of the patient, (not their own).

That shows that there’s not even really a vocabulary of expression (their feelings). I’m trying to highlight that… yes, they’re a huge part of (the journey)… They need support right at the start, and they’re entitled to ask for it.

Delia: Just to give us a brief overview of what a carer might be involved in… things like banking and appointments… like an unpaid secretary? 

You’re a specialty chef. You bathe and dress your loved one. You have to administer medication. Definitely a nurse, a doctor, a counsellor. You’re a mediator between sometimes the healthcare system and the patient and all the other financials. Yeah, the list goes on and on. It’s a fulltime job.

Delia: That’s a lot of roles.

Martina: You have potentially fatigue through your caring role because it’s such a lonely road. You’re isolated. It can lead to depression, anxiety. 

It doesn’t stop… if (your) loved one… passes away, or recovers…Because you’re still living with the aftershocks of that experience.

People sometimes say, “You know, everything is fine now, isn’t it?” You think, “Yeah, it should be, but it doesn’t feel like it.”

Delia: You’re really bringing out of the shadows and into the light a whole family experience…  and giving a voice to all the people who do so much work.

Martina: I had amazing experiences since I started Carers Couch. I was really fortunate and lucky that on every door I knocked, I got a yes. Identifying a need and getting people to think differently…

Delia: How do you see your company in the next five years? What’s your future dream for Carers Couch?

Martina: I think the best possible outcome would be if a carer is acknowledged right at the start. I would love to see it as an additional resource in every cancer institute. That would be I think the best possible outcome.

Delia: The reality is that while people are in hospital for a small period of time, most of the work is done at home by families which are the carers that you’re talking about.

You’re giving these people a voice… and you’re showing their stories on a website. I think that’s great.

Thank you for being involved in the Wikihospitals’ interview. We look forward to seeing where you go to in the future.

Martina: Thank you very much, Delia. It was a pleasure to meet you.

© Wikihospitals October 2017

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