Finances after stroke
Episode 8, 15 December 2022 (Duration: 31:15)
Guests: Letisha Living and Shannon Nelson
This is the first episode of a series with Letisha and Shannon, both young survivors of stroke. We discuss how to navigate finances and financial stress after stroke. It's a topic that often isn't talked about and one that Letisha and Shannon hope becomes less taboo.
Letisha is a mother to four boys, one who was born after her stroke. She is passionate about empowering working age survivors of stroke.
And Shannon is a nurse, wife and a mother of two. Shannon previously looked after elderly patients who had survived stroke and was astounded when stroke happened to her and her family.
Announcer: Welcome to the Young Stroke podcast, a podcast for young survivors of stroke and their support crew, bringing together younger survivors to share their stories, along with tips on living a good life after stroke. The advice given in this podcast is general in nature.
Discuss your situation and needs with your health care professionals. This series is presented by Australia’s Stroke Foundation and funded by the Australian Government Department of Social Services.
Simone: Welcome to Episode 8 of the Young Stroke Podcast. This episode we are talking about money, money, money. And how to navigate finances after stroke and also financial stress after stroke.
Today on the podcast, we're very lucky to have Letisha and Shannon join us.
Letisha is a young survivor of stroke, a mother to four boys, one who was born after her stroke. And Letisha's from the Gold Coast, Australia, and is passionate about empowering working age survivors of stroke. And Letisha's the author of Finding Yourself After Stroke.
Welcome to the episode, Letisha.
Letisha: Hi Simone and Shannon. So glad to be here with you both.
Simone: And Shannon is a nurse, wife and a mother of two. And Shannon previously looked after elderly patients who had survived stroke and was astounded when stroke happened to her and her family. Shannon is passionate about raising awareness of stroke and is one of the co-authors in Finding Yourself After Stroke.
Shannon: Thanks for having me.
Simone: So it's so great to have you both on the podcast to share your personal experiences and also your insights, I guess, and your learning along the way. Before we dive in though, it's important to note for those listening that any information or advice provided on this episode about finances is general in nature and does not take into consideration your financial situation, personal needs or goals.
And this episode is not intended as a substitute for professional legal financial advice. So before making any financial decisions, please consult a licensed finance professional.
Now, each episode we start by inviting guests to share their stroke story. And it's Stroke Week today. So what better time for both of you to give us a little bit more background into your own stroke stories.
Letisha, do you mind going first and sharing a little bit about your story with us?
Letisha: Sure. So I was 35 when my life changed forever. I was asleep when my stroke happened. I woke up in the middle of the night. Must've been about 1am. And I thought I was having a severe migraine. So I was a migraine sufferer. But then I just thought that this was a really, really, really bad migraine.
And at no time did I think that I was having a stroke.
I tried to get up and walk because I wanted to get some painkillers and I just knew that I couldn't walk. So I had pins and needles on the right side of my body. And I thought there was something wrong with my vision, but I'd had auras from previous migraines.
So that's just what I thought it was. I had my little boy sleeping next to me. He was four at the time and I went straight into mum mode and I thought, I don't want to wake him up. And my concern became more about him than it was about me.
And sunrise came and I realised there was something significantly wrong with my vision. So when the daylight hit, I realised that I couldn't say anything at all out of the right side of both of my eyes. I couldn't use my right hand properly.
And I had pins and needles still on the right side of my body.
I went to a medical center, had someone take me to a medical center. And they thought, again, it was a migraine or a reaction to the contraceptive implant. So I had that removed, just given some painkillers and told to rest.
Two days later, my vision still hadn't returned. I still had the pins and needles on my right side.
I was very sick and worsening. Getting really confused. I couldn't remember simple things like my PIN number or my phone number.
So I went to another medical center and that's when they said, go straight to emergency. And again, all through this time, I never thought for one second that I was having a stroke.
So that happened, the night was Thursday night, and it was Monday when I got to hospital and then was diagnosed and moved into a stroke ward.
Simone: And now, Letisha, the stroke impacts that you're living with. What are they today? You mentioned vision and difficulty with your PIN number and things like that. What sorts of impacts from the stroke are you living with today?
Letisha: So the vision never returned. I still have. I've got what's called homonymous hemianopia. So I'm not sure if I'm saying that correctly. But what that means is that I have no vision out of the right side of both of my eyes. I still have a little bit of weakness in my right hand.
And my stroke, the underlying factor for it was PFO. So a hole in my heart, which has been closed now. And you shared about the vision changes, the homonymous hemianopia.
Simone: Were you able to work after your stroke?
Letisha: No. So I wasn't able to return to my place of employment after my stroke. And I haven't been able to drive since.
Simone: So a significant impact from your stroke on not just your life, but your ability to earn an income, I imagine.
Simone: Yeah. Thank you so much for sharing. Shannon, do you mind sharing your story about your stroke?
Shannon: So I went to bed as normal on the Sunday night and I woke up at 3 o'clock in the morning and Stuart heard me get up to the toilet and I was fine then. And then I woke up again at 5:30 and I was thrashing around in bed. And then I fell out of bed and Stuart rushed around the bed and tried to pick me up and he recognised my stroke straight away.
So I had the facial droop. I couldn't lift both arms. I couldn't lift my right arm. I was paralysed down the right side and I couldn't speak. And I remember him calling 000 and saying to the 000 operator, I think my wife is having a stroke.
So the ambulance officer arrived about 10 minutes later and they strapped me into a hover mat because I couldn't because I was between the bed and the window.
So they dragged me down the hallway of the house. And I arrived at the hospital approximately 6am. And I was diagnosed with left middle cerebral artery stroke and it was clots. So I had the clot busting therapy at 6:20 and then I was transferred to another hospital.
And for clot retrieval. And the clot was retrieved at 7:35am. And that was fast because Stuart heard me get up to the toilet at 3am. And so my stroke onset could be timed at 3am so I was within the four and a half hours.
Simone: Wow. And so I think I mentioned we're recording this episode during stroke week. So a really good opportunity for you both to share different, your different experiences.
Letisha you didn't have the traditional or many of the traditional F.A.S.T signs. Whereas Shannon, you had Face, the Arms, the Speech. You had all three and then time was extremely critical in your particular situation as well.
And, what are the current impacts of your stroke now today, Shannon?
Shannon: So I have aphasia. So I have reduced function in my right hand. And I have fatigue and sensory overload, not a tonne sensory overload. Yeah.
Yeah, and I had a PFO as well.
Simone: Wow. And you both had the signs come on in the middle of the night. Yeah. Wow. Wow. So there's some similarities but some differences as well to your stories. And Shannon, I'm going to ask you, how do you describe aphasia to people? We've talked about homonymous hemianopia being that loss of vision in the hemispheres of both eyes.
And what about aphasia? How do you describe aphasia to people?
Shannon: So aphasia is a communication disorder. And it affects language so it can be written speech and I experience word finding difficulty and numbers so it can but it's not a loss of intelligence. Yeah.
Simone: Thank you so much for sharing how you describe it. And we've talked about some of the similarities you've had in your experiences so far, financial stress or managing and having to navigate finances after stroke.
It's something you've both also been through. And, you know, stroke is a life changing event in itself, let alone having to cope with your finances.
Shannon, I can start with you on this one, what has been your experience of navigating finances after stroke?
Shannon: So I was fortunate enough to return to work. So I returned to work four months and three weeks after my stroke. I had a graded re-entry to work.
So 5 hours a day, three days a week. And eventually that increased. And I was back work full time after ten months.
So I was really fortunate. But so I had sick leave. I used all my sick leave up, used all my annual leave up. I had income protection through my superannuation and that I wasn't allowed to apply for that until my sick leave and annual leave was used up. And eventually it kicked in after four months because it was post-dated. And then I returned to work after four months and three weeks.
So that was reduced anyway.
Simone: And Letisha, what about you? What was your experience like navigating finances after your stroke?
Letisha: Mine was a bit stressful. When I was in hospital, after my stroke I went on to sick leave and then leave without pay.
So I'd used up all of my work entitlements. So I had no annual leave. No sick leave. I was on leave without pay.
I met with my directors at work and they basically, they kind of said, well we think you should resign. So, and I was in quite an uncertain time. That's probably the best way I could describe it, leaving hospital and not knowing what was happening in my future. So I didn't fight it. I just resigned there on the spot. I had a little bit of money in the bank, but that went quite quickly. I wasn't entitled to disability payments. So I had lost my income.
And then shortly after I found out that I was pregnant. So I then had an incredible amount of financial stress because I'm thinking, well, how am I going to live? How am I going to support the children that I have got? And how am I going to bring a child into the world?
So and I didn't have any family support around either. So I couldn't go to my parents and ask them for money or help. So it was a lot of juggling and having to navigate, you know, what is there, what is there available?
And I had to find that out myself because there wasn't any resources there or anywhere I could go to to find out. So I did have a TPD. Total Permanent Disability insurance in my superannuation.
And that was able to help for a little while, but other than that it was quite a significant lifestyle change post stroke.
Simone: Wow, such a challenging time on top of dealing with your stroke at such a young age.
Letisha were there other things you had to do? Other changes you had to make. You said you mentioned lifestyle changes. What other practical changes did you need to make in order just to get through?
Letisha: Prior to my stroke I didn't really look at the price tags on things. If we wanted it, we did it.
But after my stroke, it was we just had to look at what we had and then live in between that. So instead of the kids wearing or myself wearing brand name clothing or things. We would have to swap to whatever we could afford. Instead of going out all the time on weekends and having takeaway or restaurant food you're just making things at home.
Whatever it was that we could afford at home.
Letisha: It was just cutting right back and living within our means and a lot of juggling at the same time.
Simone: How did you manage the stress during that period of time as well? I'm curious to hear if there was anything that you did or anything helpful that you had to get you through and support you in this time?
Letisha: It was pretty tough. So it was kind of, a bit of a mental, emotional challenge for me. It was a big loss of identity, so life just completely changed. I had to learn basically not to keep up with, you know, the neighbours or this so that it was just, this is us, this is our life, this is okay. It doesn't matter what it looks like.
We're not here to impress anybody else. You know what we have. We learned, and I learned, gratitude amongst all things. And appreciation for the small things.
Simone: And it sounds like accepting where you were at was a big part of that in that mindset. Yeah. Yeah. Thank you for sharing.
Shannon, was there anything else that you accessed or that helped you along the way with finances? You know, you were obviously able to get back to work. Not initially full time. But you did get there and you had some income protection as well.
Was there anything else that you accessed or that supported you?
Shannon: Yeah. So 12 months after my stroke, I was talking to a friend and his brother was diagnosed with prostate cancer and he said his brother accessed these mortgage insurance.
And I said, What? Why?
So I looked into my mortgage insurance and we had trauma insurance associated. So the policy paid out if you die or a terminal illness.
But we had trauma insurance and I thought it was to do with accidents. So motor accidents or that sort of thing. And then I looked into it further and it covered stroke, heart attacks, cancer and trauma associated with accidents. So we looked into that and we got that.
So, it's life and critical illness cover. We accessed that 12 months after. So yeah that was really helpful. Yeah.
Simone: Yeah and I think Letisha you've touched on it, you didn't really have anyone to guide you.
And Shannon, this is information you were getting from a friend's family member. Is this how you accessed the knowledge around finances and how to navigate finances? Has it all been sort of through word of mouth or searching on your own?
Is that how you've been able to access what is available?
Shannon: Yeah, because I wasn't entitled to sick benefits from Centrelink. So because my husband earned too much. So it's all to do with searching on our own and word of mouth. And really finding out what else is out there. If you're not eligible for, say, Centrelink benefits and disability benefits.
Simone: And what about things like therapy, the cost of therapy sometimes, you know, if community program or outpatient rehabilitation finishes.
Were either of you or have you been successful with the NDIS? Or how have you managed to, I guess manage that that side of rehabilitation where finances can sometimes come into it?
Shannon: I had no traditional therapy in 2019 because I was waiting for the NDIS, so I eventually got it for NDIS.
I was successful at the end of 2019. My stroke was in 2018.
So I had no traditional therapy in that time because we couldn't afford it. So, $250 for an OT session. So yeah. And then I was successful in gaining NDIS funding. So yeah.
Simone: And you'd been discharged from hospital and rehabilitation in that period?
Shannon: Being discharged from speech therapy in October and OT at the end of the year in 2018.
Simone: Letisha what's been your experience around therapy and accessing therapy?
Letisha: I was unsuccessful with my NDIS application and pretty well the same as Shannon. I did get a care plan from my GP so I was able to access five free Medicare subsidised sessions.
But then after that it didn't continue.
Simone: And so what ways around that? I mean, were there any, any sort of practical things you did to try and access therapy without it costing, you know, costing money?
Letisha: Not really. So because I have kids that have special needs. So anything that I needed, I ended up giving to them for their therapy.
Shannon: I accessed studies off the Enableme so I just trolled through studies. So I had a sleep and fatigue study. And I saw a neuropsychologist for these sessions. Because I was back at work full time, I wasn't able to access the speech therapy or aphasia studies because they were during the week.
So and I worked during the week, so but I used to access apps on my phone. So apps and participating in research was another sort of way you could get some, some free therapy in that period of time.
Yeah, but very difficult.
Simone: And again, more effort in having to go and find other options when you couldn't do traditional therapies because of the cost.
Simone: And in terms of getting support, something we often recommend is to talk to the social worker, particularly when you're in the hospital or perhaps rehabilitation, whether that's inpatient or outpatient.
Did either of you access social work or was that an option?
Letisha: The social work came and spoke to me in the hospital and yeah, we just had little chat then. And I did have a little bit of counselling after my stroke when I did leave hospital.
That was through communities, through Vision Australia.
Shannon: So the social worker visited me in hospital once and she just ran through, "you can apply for sickness benefits through Centrelink." That's it.
Simone: And were you able to take that information in that early phase, Shannon?
Shannon: No. No, it was too, too early on. Yeah.
Simone: So it would be nice but potentially later on down the track when you're able to, if you've had some time to adjust to the stroke and yeah, you're able to take that information on board.
Was there any other major challenges or what would you say was the most challenging thing about the finances after your stroke?
Do either of you have sort of one thing that stood out that was just really, really challenging for you both?
Letisha: For me, it was the unknown. So the uncertainty and not knowing. You know it was just such a, a sudden and huge life change to have a stroke. And then, you know, we talk a lot about the rehab journey, but not the finances.
It was like, well, where do I go? Who do I talk to? What is available?
And yeah, that was probably a big challenge for me not knowing where to find information or what was available to help me and my family.
Shannon: So, the unknown as well. But my husband had to return to work because we had a mortgage still to pay, so my parents gave up three months of their lives to take care of me and my family. So mum used to come in during the week and drive me to my appointments.
And then they also supported us financially after a couple of months before I, when I was returning to work. We had bills to pay. It's the unknown. What if I can't return to work?
Simone: And I imagine too, you know, if you didn't have those supports, Shannon, that would be really challenging, you know, how would you have got to therapy etc..
And Letisha, you said you didn't really have that support at all.
Simone: So, and in an ideal world, you know, it would have been fantastic for your husband to be able to take that time off to be with you. But, you know, because of finances and the pressures that you had and the commitments that you had that wasn't wasn't a possibility.
Simone: And you know, you've both shared that, you know, navigating finances is pretty tricky after stroke. There's not enough information out there. Do you feel like it isn't talked enough about?
Letisha: Yeah I do. I do feel that it's not discussed enough.
Shannon: I agree. There's not enough out there. Because they focus on your recovery, but your recovery is financial as well. And so dependent on your finances in many ways.
Simone: And I guess too even if you've got pressure to go back to work sooner, but you may not be ready from that recovery perspective, then there's that extra pressure to go back sooner than you might otherwise.
So it is really something that underpins everything that you're doing and rehabilitation. And also the emotional and psychological stress that it puts on you by the sound of it is huge. And then having to still navigate your recovery.
And so I'm curious to know if you have specific advice, you know, whether it's maybe somebody similar to yourselves that might be either really new in their journey, they've just had their stroke. Or even someone down the track after their stroke that could be still experiencing financial stress.
Is there specific tips, or I guess, wisdom that you would like to share with them?
Letisha: Yeah. Look at what you've got currently first, because there are things that, like Shannon was saying, Shannon was saying there's things that you might not know about.
So in my situation, four days before my stroke, I bought a brand new car. And I didn't actually get to drive my brand new car because I had a stroke and then I had car payments.
But, however, I had taken out insurance on my car. So the insurance company paid out the monthly payments on my car.
So and then we were saying earlier that we had, you know, some things inside of our superannuation. So have a look at what you've got because there might be things there that you don't know about that can help you.
Shannon: I go and see a financial advisor. The banks offer free financial advice. So go and see one of those when you are able to.
Because we I, I didn't access financial advice from my bank and I wish I had.
Simone: Is there anything else that you would add? I think you've both shared that looking at what you've got, I guess it's also a good message for people that may not necessarily have had a stroke.
So it might be carers and family members and friends listening to this that, you know, it's always important also to be thinking about making sure you've got all of those things in place as well.
Shannon: You have income protection there that you know what, you know what you can access as well.
So my advice is if you are healthy and you don't have income protection, take it out straight away.
Letisha: I totally agree. Yeah. You just never know. You never think for one second that it's going to happen to you.
Shannon: Because I can't. Because I had the stroke my income protection will be so high now. So I didn't have income protection by myself.
So if you're healthy, take out income protection straight away.
Simone: Did you talk to other survivors about finances? Was that also quite taboo to talk about finances with other stroke survivors?
Letisha: Yeah, it can be it can be really embarrassing to say I have no money, I'm struggling. I can't pay this. I don't know what to do. I don't know who to ask for help.
That can be a really hard thing to do. So, and when you are in that situation and you are a parent or you have pride and things like that, it's hard to come out openly and say, I'm having financial stress.
I can't pay my bills. I don't know where money is coming from. Prior to this, I really hadn't spoken to anybody about it.
Shannon: No, I didn't ask. I didn't talk to other stroke survivors about finances.
Simone: So you would go to other peers that have had strokes for other things and other emotional support and but finances was still quite taboo.
Letisha and Shannon: Yeah, yeah.
Simone: How do you feel now about having a podcast and sharing your stories? How does that feel to be sharing quite openly about finances? And do you think that this is going to change over time for people who have had a stroke that they might be more open to perhaps ask a friend that has had a stroke.
You know, what have you done about finances? Was there anything that you access? Do you think that that will shift over time?
Letisha: I hope it does, because there's things out there in the community that can help you that again, things that you're not aware of.
And just by having those conversations, you can see what community things there are that you can access to help. I mean, good people fall on bad times. For me, you know, once you if you're in a bad time or a hard time, it doesn't mean that you're a bad person.
Anyone can fall into a hard time.
Simone: Yeah, thank you so much for both sharing your stories and being so open. I absolutely know that this is going to help many other people that listen to this episode.
If you're feeling overwhelmed and you do need guidance to navigate finances or help with financial stress after stroke, you're not alone. And the sooner you access advice and support, as we've heard, particularly from Shannon, I think you said, you know, the better it's really important to access that help and support sooner rather than later.
So there are a few things that you can do.
One, you can speak to a social worker if you're in hospital or undergoing inpatient or outpatient or community rehabilitation. You can also speak to a social worker through Centrelink.
Secondly, you can call the National Debt Helpline on 1800 007 007 or go to ndh.org.au and speak to a free financial counsellor in your state or territory.
And you can also call StrokeLine on 1800 787 653, Monday to Friday, 9 a.m. to 5 p.m., Australian Eastern Standard Time.
Or you can email firstname.lastname@example.org.
Thank you so much again for being on this episode, Letisha and Shannon.
If you're listening and you found this episode helpful, please do share it with your family and friends and you can subscribe to the podcast to be notified about future episodes.
You can also leave us a review so that more of the stroke community can find us and find this important information out.
And, you know, let's hope that we start to change the story on finances after stroke and that more people like yourselves, Letisha and Shannon are happy to talk about finances and, you know, find it easier to navigate finances after stroke.
Thank you so much both for being on this episode.
Letisha and Shannon: Thank you for having us.
Announcer: That’s all for today’s Young Stroke Podcast. Find more young stroke resources at young.strokefoundation.org.au.
You can listen to dozens of other podcasts on our stroke recovery website, enableme.org.au. StrokeLine’s health professionals provide practical, free, and confidential advice. Connect with them on Enable Me or call 1800-stroke. That’s 1800-787-653.
The advice given here is general in nature. Discuss your situation and needs with your healthcare professionals. The Young Stroke Podcast series is presented by Australia’s Stroke Foundation and funded by the Australian Government Department of Social Services.