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’Neill. This is the MS Australia Raw Nerve podcast, and during this week, National Carers Week, we have a two-part podcast for you. We published part one earlier this week and you can go to the MS Australia Facebook page to find out about that. And this is part two of the podcast. We’ve caught up 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 is a wonderful advocate for carers. She’s both a parent and a carer to her two sons both living with disabilities and complex needs. Briana, I imagine that this is the case with you where every situation is unique and has different challenges.
Briana Blackett:
This is again, a really good question because so much of my life… I’m the only person in my house that doesn’t have a disability. So I’ve become really used to building a world and living in a world that is really, I guess not just inclusive, but adapted towards disability. And it’s funny, I don’t notice that until people might come to my house and they’ll walk in and they’ll see a rocking chair at the dining table and they’re like, “Oh, what’s all that about?” I’m like, “Oh, well, sometimes my children need to move to stay focused. So we have a rocking chair, so if they need to sit and rock while they’re eating, they can still stay with us at the table and eat.” What else? We just have all sorts of random things around that are so normal for us, but unusual for other people. So, the reason I say this is that when people first started to visit my house, they see all these weird little things around, the very high bed.
We used to have alfoil in the toilet, that would tell me, “Oh, he’s going to the toilet.” So I could reset the clock to know when I needed to take him again. And I had a guest one time and she wants to use the toilet, they’re at the toilet. She came out three seconds later saying, “What do I do with the alfoil?” And I’m like, “Oh.” And these little tiny things that I’ve just in deliberately hidden away. And I didn’t want to share them with other people because I thought it was, I guess, our thing. And it’s only now that I’m comfortable with people coming in and seeing the way we’ve established ourselves to live well and be able to say… We’ll put it this way, once upon a time, I probably wouldn’t have asked for someone to go out and get some help, or I think it’s a matter of feeling comfortable in your own space and comfortable enough with yourself to ask for help and to let people in.
Because I’m always conscious of the judgment that can come. Why are you doing that? And what’s all that about and stuff. And I think the best thing people can do is ask questions, but without judgment, with interest and with compassion and care, because we’re all adapting. We’re all doing what we can. Yeah, I think it was the judgment that stopped me from asking for help because once again, I felt it looked like I wasn’t coping or I wasn’t capable. But I think the best thing you can do is if you want to help someone ask genuinely, “What can I do? Do you want me to bring you some groceries? Do you want me to mow your lawn?” Ask for some practical things that you can do because these are things that take the load off us. They’re still things we have to do, but they take the load off us. If you have questions when you’re in somebody’s presence, then just ask. But ask compassionately and with empathy, because that was something I had to learn as well, to be comfortable having someone in our space that we had designed for ourselves.
Phil O’Neil:
It’s the same thing with MS. People don’t quite know how to approach the question. I always say, “Ask me directly, whatever it is you want to ask me.” And because they tend to think, “Well, I don’t want to upset you.” It’s so much better when the cards are all on the table and everybody knows where we’re at and there’s no harm in that because I would rather you know the full story.
Briana Blackett:
I would rather the person come out and say, “Hey, what do I do with the alfoil? What’s all that about?” than secretly try and pee around it or whatever, and then leave without asking the question. And then ask all the friends, “Hey, why does Bri have the alfoil?” I’d rather them come out and say, “What’s all this about?” So I can say, “Well, look, these are the things that we do to make our lives workable.”
Phil O’Neil:
We need some t-shirts printed up that say, “Ask me anything.”
Paul Koury:
I just ask my wife now; she knows everything.
Phil O’Neil:
Now we went through with the alfoil, Paul, with the Australian Carers Guide, improvisation is the key here and the mother of all invention, probably you welcome these ideas as well because there’s no one thing that fits everybody’s ideal.
Paul Koury:
I was just going to say too, Briana, you haven’t thought of starting a blog with your eight hacks.
Briana Blackett:
Maybe I’ll write up a little article and send it off to you guys. Yeah.
Paul Koury:
Because why reinvent the wheel if other people are going through the same thing? How do I tell if my child’s in the toilet? All of a sudden you’ve gone through that.
Briana Blackett:
You hear the tinkle?
Paul Koury:
It’s like when people go into my house, why is everything on a magnet, like my remote controls, my this, my that? It’s because I can’t bend down and pick them up every time I drop something. So I’ve got things around the house, if people scratch their noggin, but I’m happy to share it with them because-
Briana Blackett:
We do need to share these hacks, don’t we?
Phil O’Neil:
It’s a great idea.
Paul Koury:
What I found most difficult with MS is it’s not visible. If I’m walking down the street, you wouldn’t know. Only a few weeks ago I had to play at a friend’s wedding and I was walking to the church after taking my guitar and equipment in there. So I’m starting to get fatigued now. And when I get fatigued, I start to limp and that’s when things are dangerous. And I was walking towards the church and I lost my footing and I grabbed onto to the first person next to me. It was a guy and a girl, but it was the girl’s hand. Now some bloke walking up the street in the city, latches onto his girlfriend, so I don’t go face down. And he’s like, “Excuse me. Got a little bit, How’s your father?” I had to explain to him spur of the moment, “Sorry, sorry. I was going to lose my footing. I’ve got MS. I’m done.”
And that’s happened so many times when I’m walking along and then I’ll lose my balance and bump into people and they’re thinking I’m drunk or something. And I’m not going to say to them, “I have MS, I’m unstable.” And then I thought, “Well, if I start carrying a cane around with me, I don’t want to do that because then I’ve succumbed to the walking.” But once I started doing that in certain areas like airports and things, people started to understand, “Okay, well this guy might be a bit unstable.” Here’s the funny thing. It’s amazing how many people come and help.
Phil O’Neil:
Yeah, of course.
Paul Koury:
Would you like some help to the airplane? Can I help you with your luggage? So now, this walking stick is like my wand.
Phil O’Neil:
As somebody that suffers from MS, and I imagine it’s the same with carers as well. You want to accentuate the positive. You don’t want to know how people are feeling guilty on your behalf.
Paul Koury:
No, we write about that all the time. And I use myself. There was , it was a few months now, we did a video that I posted being a publisher and the editor for the magazine. I tell my own story. If you go to the about page on the Australian Carer’s Guide, there’s my story, my mother, and how I, even with that, don’t allow it to stop finding use to… My mother’s gone now, but still helping other people with the experiences that I’ve gone through.
Phil O’Neil:
Yeah.
Paul Koury:
And what could help better care for themselves and care for their parents.
Phil O’Neil:
You mentioned before seeing government departments like the NDIS. What can government departments change with their systems to better support support workers?
Briana Blackett:
Something that Paul brought up earlier was looking at the care needs of the recipient through the lens of the person providing the unpaid care. So much of what, in my respects, the children require is decided upon separately to me. Whereas coming up with a therapy plan, coming up with an education plan, come out with a health plan, all worked on the assumption that I’m able to fulfill all of those plans myself. And so what they need to do is start looking at carer capacity when they create the supports for the people that they’re supporting, whether it’s a child with disability, an adult with disability, a person with dementia, or a person who is mentally ill. Those care plans that we provide for the care recipient also need to factor in the needs of the person providing that unpaid care. And again, we talk about guilt because we feel like we’re not keeping all these plans in the air.
Every person thinks that they’re the only one giving you something to do, when they’re one in a long list of many departments and health service professionals and educators giving you something to do, and not being able to keep all those balls in the air is one of the reasons that carers burnout and feel like they are failing. And then the recipient doesn’t get the support they need because basically too much has been asked of one person. So for me, I think they need to take into account the carer capacity when they devise supports for people and their capacity includes actually self-care for the carer. They might be able to wake up at three in the morning, but can they wake up at three in the morning every day for 20 years?
Literally, let’s look at this from a sustainable perspective and don’t take that unpaid carer for granted because they are very much human and they will definitely fall down if their needs are not incorporated into the plan.
Paul Koury:
That’s exactly right.
Briana Blackett:
Paul, you talked about needing a carer or somebody to help you put your shoes on and so on. From your experience to someone who’s provided unpaid care to someone who might one point need unpaid care, what would you say to your unpaid carers in the future if you need one, the best way to address your needs
Paul Koury:
Well, first of all, I see that they’re offering or volunteering care. I just say, “Look, these are my practical needs and I know it’s not for everyone and you can only do what you can do. So tell me, what’s your availability like?” and then I find something throughout that, it may be shopping, or it’s maybe just walking my dog, I’ve got a dog because that’s a lot of therapy for me. And it could be just those practical things to cleaning, changing the sheets, or what have you. But when it’s a timely thing in the morning, getting up and needing all those kind of things, that’s something, and I’ve just started to apply for it myself. And now I understand what talking about is the NDIS process because I’m not 67 yet. Once you get to a certain age, you click over into aged care, home care packages.
So I’m still NDIS, I’ve just applied, but from what I’ve heard from my care plan manager and so forth, they can provide care right around those essential eight o’clock to nine o’clock things. And also, I’ve made great relationships with people in volunteer, because I do know there’s a lot of volunteer advocate type associations that have volunteers that can assist and provide care at no cost or they’re funded or subsidized by the government. And to reach out to some of those. And there’s other things like Gather My Crew, which is an app that you can request help, and then people who want to volunteer help, and you can meet and have a circle of carers for yourself. And one other question I had for you, Briana, is can you access respite care? Can your children be looked after by someone else or you take time out? Is that possible?
Briana Blackett:
Yeah, and I do do that now. Again, took me a long time to be comfortable with that. Now I’m very comfortable with that. The issue with us is that not every support worker is going to be a good fit for my child. And I have an amazing team, an amazing team, but it took years to find it. And I don’t want them to burn out either. My kids have never had the capacity or ability at this point to tell me how they would like me to approach things. Right? And I’ve always thought if they could tell me how I’m going to do this, and not even how they want me to help them eat their meals or something, but just how do you want me to approach it? Should I just wait for them to come to me to tell me they need help? Or am I being too much of a helicopter mum jumping in? I sometimes wonder if they had the chance to say to me, “Mum, we want you to do it this way.”
Paul Koury:
Well, I do know that we’ve written about this quite some time, that a lot of the helicopter jump in type carers can sometimes leave the person being cared for feel like they don’t have any more control over their lives. So to include them in all the decision-making processes, and even though you might know best, just the inclusion part makes them feel that they’ve got skin in the game.
Briana Blackett:
Interesting.
Paul Koury:
Correct. Yeah. So even though they might say, “Mum, I want you to feed me from the top of the roof,” which is not right.
Briana Blackett:
Because my son would actually recommend if it was a point.
Paul Koury:
“Well, I really appreciate your input. For now, so that I can get it into your mouth, we’ll probably just still stay in, but I’m glad we had this chat,” sort of thing. It still makes it feel valid, rather than, “We’re going here, Mum. We’re going there, Mum. It’s four o’clock, have your thing.” They just become out of the game and they lose their sense of worth and their sense of contribution. The older person’s advocacy network ran a great story on this in our magazine about the importance of inclusion in decision-making process. So from that, I would suggest, yeah, include them, ask them, to the best way they can, I suppose.
Briana Blackett:
I think first of all was really great that we’re hearing people talk about carers, unpaid carers, a lot more because when I became it, I didn’t even know what it was. I had to Google it after someone used the word, they basically called me a carer and I’m like, “What? I’m not that.” And then I googled it and realized I absolutely was that. And I think it’s really great that we can talk about the challenges of being an unpaid carer. Took me a long time to be open about that because I felt I was somehow betraying my beautiful children.
But I also think it’s great to also end on the note of how meaningful and marvelous it can be. Being an unpaid carer, it is the most important thing I’ve ever done, and it has changed my entire world, and it has changed who I am. I will never be able to go back to being the person that I was before I was an unpaid carer. And I think that’s a good thing. I think it’s great that you’re talking about it on the Raw Nerve. I think that’s excellent. It’s great to hear more people talking about it. An absolute richness that comes with it, but it’s also great that we can speak openly about the challenges.
Paul Koury:
People like you, Briana, are heroes to me. You are the most selfless, no greater love than to give your life for someone else and to dedicate your love to your children. You are the reason I do what I do. People like you are my inspiration. So, well done. I couldn’t imagine what it is that you go through, but I just know that it requires a big soul and a big heart and so much selflessness to do what you do. You’ve got my utmost respect.
Phil O’Neil:
I agree. Yes.
Paul Koury:
Please send me your hacks to have a look at what we can take from it.
Briana Blackett:
And I’m going to share your carers guide. Now that I know it’s out there, I’ll share with my network. I think I have a lot of carer friends, and it’s always good to have a place to go, especially for the newbies.
Paul Koury:
Yeah. And look, that’s what I was going to say, Phil, if people want a copy of the guide, they can get it for free online. Just go to australiancarersguide.com.au. Download the digital guide for free. If you want, because of the demographic of our readers, we also do it in print because they like the tangible large print format, old school. It’s information that’s there to support and help you and to know where and what resources are available. All the help that you can get, get it.
Phil O’Neil:
Well, Paul and Briana, thank you so much for being part of MS Australia’s Raw Nerve podcast and also from the people that are listening to this podcast.
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.
