The opinions shared in this episode are not officially endorsed by MS Australia. It’s important to know that there is limited evidence regarding the effects of various diets on MS disease progression. What might be effective for one individual may not necessarily be suitable for another. If you’re considering any dietary changes, we recommend discussing them with your healthcare professional.
Welcome to the Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments and advocacy efforts, as well as candid and informative interviews with our community, those living with MS and their families and carers, together with leading clinicians, researchers, and advocates.
Phil O’Neil:
Hello, I’m Phil O’Neil. This is the MS Australia Raw Nerve Podcast, and during this week, National Carers Week, we have a two-part podcast for you. Part one you’re listening to now, part two will be later on this week. In this podcast, we’ll be having a chat with Paul Koury who started the Australian Carers Guide, a publication to help other carers navigate this challenging and unique journey. And Briana Blackett. Briana’s a wonderful advocate for carers. She’s both a parent and a carer to her two sons, both living with disabilities and complex needs. Paul, we’ll start with you. If you can tell us about the Australian Carers Guide, the publication, how did this come about and what’s your contribution to it and who do you reach with this?
Paul Koury:
Okay. It came about by my personal journey as a carer for my mother for eight years. She’s passed now, but during that time, there were so many things I had to do, whether it was finding a nursing home, deeming rates, a pension, Centrelink Home Care packages, a whole myriad of things. There wasn’t any central place where I could just have information for carers starting this journey. My previous wife was a publisher and I thought, “One day when the timing’s right…” Obviously I’d spoken to other carers, all were saying the same thing. There’s a lot of information about how to care for your elderly loved one and where to take them or what to do and when to do it, but nothing for the carer. And I felt that we were shouldering the lot of the load because not only do we have our own families, but now we’re parenting upwards and parenting our parents.
And so, I just thought we know when the time was right, but I’m going to produce a publication for carers, and I started with the Australian Carers Guide. And I covered all the topics for physical, emotional, spiritual, financial wellbeing, but I put it out for as far as information to relevant parties like Dementia Australia, like Carers Victoria, Carers Australia, even Maggie Beer when it came to recipes. Ita Buttrose, I interviewed because she’s got a lot to say about aged care in the future. She’s a great advocate in that space.
I realized that because of my unique reach to get to the carer, because they’re reading our magazine and how do you get to them because they’re in homes all across Australia? There was so many other people interested in speaking to them. So they populated my publication with really relevant and helpful editorial, and it’s sustained by aged care providers, whether it’s home care, aged care, dementia care, respite care, advertising, you want to get to them. So that’s the business model, and it’s just grown legs beyond my ability to manage it now almost. And that’s what I’m finding now because I’m the other side of that coin and get my MS treatment, the doctor’s like, “Well, hope you take… Hope you’re relaxing and de-stressing your life, and…” I’m preaching self-care, and on the other side of the coin, do as I say, don’t do as I do.
Phil O’Neil:
Yeah. Well, as somebody that from MS, as you learn more about your MS journey, you tend to also go to the doctor and inform them of things that you found out. But when you initially became a carer, what were some of the things that you weren’t expecting that you came up against?
Paul Koury:
I was lucky to have a sister that could help as well, because my mom had complications with stoma bags, and then I realized not every home care provider can deal with these type of issues. There was issues with hoarding that I had to deal with and there are psychological problems. I didn’t know how to address that without completely derailing family dynamic. Also, my mother, once my father passed away, I realized had a problem with being alone. So we had to rally all the nieces and nephews and put timetables that were around spending a night with her. Having a timetable and so forth to administer to her needs until we got her into a nursing home and there was only certain nursing homes and then her pension and deeming rates. It was just a whole minefield. [inaudible 00:04:25].
Phil O’Neil:
It would be fair to say then that no one plan particularly works for everybody, but also you, I guess, have to invent things as you go along that suit the situation you’re in.
Paul Koury:
Correct. Yeah. There’s no two plans that are the same. But what I did learn and what I talk about in the magazine, is that you should not treat a plan for care for your parents or your sibling or spouse or whatever, separate to yours. The care plan should incorporate the both of you. Because if you said, “Explain Australian Carer’s Guide in one sentence,” it would be put the oxygen mask on yourself first because if you’re not well and able to be your [inaudible 00:05:01] loved one, you’re no good to anybody.
Phil O’Neil:
At this stage I’d like to bring Brianna in as well. Could you tell me your story of being a carer?
Briana Blackett:
Yeah. Well, my caring journey starts at the opposite end of Paul’s. I have children who have disability, so it’s a very different kind of caring journey. It starts when they’re born and will probably end when I die, to be honest with you. This will be a lifelong thing for me and my children. So I had to laugh when Paul said, the doctors are saying, “Well, are you taking care of yourself?” Agh. I swear to God, I reached the point once where I thought, “I’m going to slap the next person that says that to me,” because it’s not that you choose not to take care of yourself. You have caring roles, you have care and commitments. I’m a sole parent and therefore a sole carer, 24/7 it’s on me. Come hell or high water I have to get up and stay up. My children need round the clock care, so I need to be conscious at any time of day or night of what their needs are and be able to meet them.
So for me, it’s very much about… It took me a long time to realize I needed to create a sustainable plan for myself. So you’re absolute right, Paul, that oxygen mask has to come on first. But also to touch on another word you said, guilt. Oh my gosh. Taking care of yourself first seems like the antithesis of what unpaid caring is, and it took me a long time to come to that as well. But in a nutshell, my kids both have disability. It’s just my two kids and I and we have this funny little life, as I call it, that we muddle through, we make it happen. But it has been a long journey for me to even realize I was a carer and then an even longer journey to realize how to take care of myself while I was supporting that.
Phil O’Neil:
You mentioned guilt, and I was going to touch on that with you as well, and also having a sustainable plan for yourself. Because I imagine one of the very early things you have to do is let the burden go that you’ve put upon yourself.
Briana Blackett:
And again, every caring journey is different because every care recipient is different. For me, the guilt that I experienced was one of coming up against continual barriers for my children to have ordinary lives. And so I put a lot of guilt on myself to find ways around both. A lot of pressure on myself, and if I didn’t do it or didn’t do it fast enough or came across problems, I would sort of assume that I could have done better, could have found another way. So I took on a lot of responsibility for doing something that is quite impossible for one lone person to do, which is create accessible education, create inclusive systems within society. I mean, this takes a society to do, but for me, in my own little head, I was like, “Well, I’ve got to sort all these things out.” And if it didn’t happen, then I blamed myself and I felt guilt for not making their lives easier.
Phil O’Neil:
As you say, there comes a stage where you’ve got to also relinquish a little bit of control and allow somebody else to take over to give yourself a break if nothing else.
Briana Blackett:
That was a really hard thing for me to do. I’m a pretty high performing person. I like to think of myself as very capable. Everyone does. We all like to think we’re capable, right? And I felt that me asking for help was a sign that I wasn’t capable. I don’t know, Paul, if you felt that, but I felt it was a failing on my part to need to ask for help. And that was a big, big, big lesson for me to learn. One I’m glad I learned because the minute I asked for help, the minute life got easier and the minute life got better.
Paul Koury:
It’s amazing how much help is available.
Briana Blackett:
True. But I mean, look, we had to fight for it. Again, for us, when you’re a parent of a child with disability, a lot of the times you ask for help, it’s like, well, that’s just parental responsibility, parental responsibility. And so, you would have to push back and say, “Well, is every parent changing their 12 year old’s nappies?” You’d have to say, “This is not typical parenting.”. So for parents of children having to sort of draw that line in the sand and say, “Actually, this is not typical. We actually need help and this is why. And we shouldn’t have to be made to feel like bad parents to ask for it.” So it’s a bit different for this end of the parenting spectrum. And there is so much change because of the NDIS, which is obviously not accessible for most people who are experiencing aged care needs. But for us, it’s still a long journey for us to make sure that those supports are naturally in place as opposed to things that you have to fight for.
Paul Koury:
So obviously during your journey, Briana, if you come across the volunteer market of people who provide help to people in your situations, apps like Gather My Crew, which you can bring onboard people that would volunteer to assist, community groups, church groups. There’s a lot of non-for-profits out there with big hearts that I didn’t realize until I started this magazine that offer philanthropic care just out of the goodness and goodwill of humanity. Did you find any of those?
Briana Blackett:
Yeah, well, my school group, the school friends, those conversations, that led to hooking up with some of those really amazing group. It’ll do things like… I remember in COVID, I don’t know how COVID impacted you guys, but when I got COVID, it was that time that no one else could come. Through isolation, that was when I needed help the most because I was very sick and the support workers who would typically come to help me weren’t able to come to help because I had to isolate. So, I was actually working twice as hard whilst having COVID. And some of those groups you talk about, Paul, were really fundamental in dropping off groceries, just making sure someone could go get the food for us. I wasn’t allowed to leave the house. Those little things were the things that really made a big impression on me. Those small, tiny little things that are nothing to anyone else were big things to me.
Phil O’Neil:
But it’s thinking outside of the box, isn’t it, as well, to make it up as you go along too?
Briana Blackett:
No, absolutely. Sometimes I think one of the issues is people don’t know how to help unpaid carers. We don’t naturally ask for it, and they can’t possibly imagine what would help, because I mean, how could you? I couldn’t have imagined it. But I remember one time, and this is a really good example, if anyone out there is wondering, “How can I help? I don’t know what they need, how can I help?” Again, for me, and I’ve got kids with disability, so it’s more difficult for me to get out…
It’s a military operation actually, for us to get out in the house to go shopping. And a dear friend of mine, whenever some special day at school would come up Mufti Day or Wear a Blue Shirt Day or a Funny Hair Day or whatever, she’d call me from the shops and say, “Hey, I’m out getting my kids an orange shirt for Harmony Day. Shall I get one for your kids too?” And that was like, “Yes.” That very small thing, nothing. The ocean’s already there. But for me it was one less thing for me to do and I could focus on my role.
Paul Koury:
Those little things that make a huge difference.
Phil O’Neil:
Yeah. Well, we’ve touched on misconceptions that people have, and I imagine that you would get a lot of this where people who are trying to help but don’t really know what to do.
Paul Koury:
Look, as I age, I’ve become a lot better at asking for help and realizing that actually it’s a strength, not a weakness to be able to ask for help and to let people… And you’d be surprised how many people, I think it’s just in human nature. If somebody asked me for help, I’m on my horse. I’m the first to run into the house and grab your kid, and there’s something in us that responds to, “I need your help.” And because we’re never ask it, being notoriously…
Briana Blackett:
Stoic
Paul Koury:
I flipped it over the other way around. So I’m very good at asking for help now, and I’ll tell people specifically what I need. I need someone to help me in the mornings to put the shoe on my foot. So unless you’re available between 8:00 and 9:00, there’s nothing you can do for me. Sometimes people want to help, but it’s right now because the kids are screaming the fridge is… I need a second person now.
Phil O’Neil:
So, it’s prioritizing as well, isn’t it?
Paul Koury:
Yeah, exactly. What I’ve realized, and this happened as a cathartic moment as I journey through the publication and spruiking about self-care, and looking at studies and writing articles and talking to people in this space, I realized that 40% of carers, not maybe in your space, Briana, with children, but 40% of carers caring for their elderly are in worse health condition than their elderly. And when they’re in that scenario, whether it’s overt or not, the actual parent that you’re caring for is less confident, if you like, for lack of a better word, or has anxiety because the carer, which they’ve hitched their wagon to is fragile and that causes them to be unstable.
But if they see you fit… full of beans and full of energy and looking healthy and that, there’s a subconscious peace that comes with that because they know you’re their lifeline and you are in good condition. And I liken that to when you go through turbulence in a plane and you look at the hostess, and if she’s just serving drinks, you’re calm. If she’s looking out the window thinking, “Oh my goodness,” then the whole place panics. And once I started to see it through that lens, I realized I owe it to your wellbeing for me to be well, because you don’t realize that now on the surface, but you are going to subconsciously feel better and you’ll know [inaudible 00:14:19] in good stead.
Phil O’Neil:
First advice would be then try not to overcompensate.
Paul Koury:
Exactly. You matter. If you are not well, you can’t care for anybody, and you go down, you take the ship with you.
Phil O’Neil:
And I meant that by way of the carer as well, to come in and in essence, try too hard to appear to be overcompensating as well, because that can make everybody a little anxious.
Paul Koury:
Absolutely.
Phil O’Neil:
This has been part one of the MS Australia Raw Nerve podcast for Carers Week, and you’ll be able to hear part two of our chat with Paul and Briana later on this week.
Voiceover:
Thanks for listening to the Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.
