Roles and relationships

Episode 7, 12 May 2022 (Duration: 35:17)

Guests: Naomi and Matthew Morris
Stroke occurs suddenly, changing the lives of not only the survivor of stroke but impacting everyone around them. This episode explores the impact of stroke on roles and relationships within the family unit.  

Podcast transcript

Announcer: Welcome to the Young Stroke podcast, a podcast for young stroke survivors 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 the Young Stroke Podcast. Stroke occurs suddenly changing the lives of not only the survivor of stroke but impacting everyone around them. Today we’re going to be talking about the impact of stroke on roles and relationships within the family unit. Today on the podcast, we have Matthew and Naomi Morris. Matthew and Naomi have been married for sixteen years, have two teenage boys, and have lived and worked on the central coast of New South Wales their whole lives, Matthew as a social worker up until these stroke and Naomi as a lawyer. Thank you both so much for being on the podcast and for sharing your experiences with us today.

Matthew: Yeah, thanks for having us, Simone.

Simone: Now Matt, I know that before your stroke you were very active, a very busy, active father and working as a social worker. Would you be able to share a little bit about your stroke story?

Matthew: So, like you said before the stroke, I was just living my best life, married, two boys surfing a lot, bike riding in the bush with the boys. I was studying at uni as well and working in a family support service where we, you know, supported hundreds of families every year. So it was a very busy role. And I guess, you know, I was fit and healthy and the doctors still don’t know why I had a stroke. It was just a Friday afternoon. I’d taken the boys out to the bush bike riding. I can’t actually remember any of this. And maybe I’ll let Naomi share the story from her perspective.

Naomi: It was during Covid, so it was in 2020 in August, and we’d all been home because we had a head cold. By the Friday afternoon Matt was feeling a lot better. And he said, I really want to just get out of the house and take the boys out for a bike ride in the in the bush. So, I drove down Matt and the boys out to the bush. Me and my youngest son waited at the bottom of the hill for ages.

Something must be wrong. I don’t know why…they should be back by now. One of them must have fallen off. As a mum of boys, we have things all the time. Like, well, one of them’s fallen off. I’m sure they’re fine. They’ll be right after. But no, it’s been an extraordinarily long amount of time, you know?

So, I started looking up to see up towards the top of the hill. And then I saw Matt and Noah, my eldest son, walking back down the fire trial towards us. And so, I’m like ‘Ah, one of them’s come off.’ And when they got to us, Noah said to me, ‘Mum, Dad, Dad’s had a bad accident. He’s, he’s not doing well. He keeps asking me the same questions over and over again. I’ll put the bikes on the car, and you sort out what’s happened.’ So, Noah was only 13 at the time, and I kind of just thought it was a bit of a joke because I looked at Matt and he did have like grazes on him and I could see that he’d come off this bike.

But he looked at me and he said, what day is it? And I was like, You guys are funny. It’s Friday. And he goes, What? Why aren’t I at work? And I said, well, because you’ve been sick. It’s like, Oh. So, I thought I’d go for a ride, did I? And I was like, yeah. It was like, we came up for a ride.

And then I sort of started to realise and he asked the same sort of five questions on repeat over and over and over again. And so obviously I realised that there was something wrong, but I still didn’t think it was that bad. And I sort of said, oh, maybe, you know, well, maybe we should call an ambulance. And Matt very, very vocally said, we don’t need an ambulance. I’m, fine. You know, I don’t need an ambulance. What day is it? And I’m like, Yeah, I think we maybe should call an ambulance. And he talked me out of it.

I said, OK, well, let’s just get in the car. And I started driving towards the hospital and I rang the at the triage people, and they said, no, you need an ambulance right away. The ambulance is going to meet you on your way. They met us on the road to the hospital. And at that stage we thought it was a concussion. We didn’t think anything else. It didn’t even cross my mind that it was anything else. I thought is just he said he’s he’ll come good. He’ll be fine.

And then it was on the Sunday that they actually came in and said to us with had a really good look at the scans. They’d done some more scans by then and they said he’s actually had a stroke.

Matthew: The doctor said, I’ve got some really bad news. You’ve had a stroke. And I said, that’s not bad news. That’s fantastic news. I thought that I was just rubbish and fell off my bike. But now you’re telling me there’s a reason why I fell off my bike. I’ve got an acquired brain injury now from the stroke, and because of the stroke, it gave me weakness and made me fall off my pushbike and land on my head. And so, I also got a traumatic brain injury from landing on my head.

Simone: What have been the main ongoing impacts from the strike?

Naomi: So, I think the main impact has been what we now understand to be sensory processing disorder. It was actually a bit of a light bulb moment when he got that diagnosis and we realised that that’s what was going on because we put it down to fatigue. We thought that we were managing fatigue. He had an assessment maybe about six months ago and they said, look, we think what you’re actually experiencing now is sensory processing disorder,’ and just learning to understand what was happening through that lens has really helped, I think, to and learning to manage that.

So, what happens for Matt now is that he gets sensory overload. And when he starts to feel that he’s getting overloaded, he’ll put his dark sunglasses on, he’ll put earplugs into his eyes, he’ll turn off all the lights. If he doesn’t get hold of it early, then he has to end up going in to lay down in a dark room with all the blinds shut, with a pillow over his eyes and he gets really bad nausea when that happens. So, he has to stay there until the nausea passes and he can come back out again. So that can happen at any time. We spend our whole day, all day, every day managing that for him. And just like being alert to his cues and things to help him manage it as well. And it’s just something that we can’t ignore because if we do, his body overrides it and he’ll just start dry retching. We’ll just be somewhere, and he’ll just start dry retching. He his body sort of takes over and says, no, you need to stop, and you need to manage this. So, that’s probably the main physical impacts that we’ve had.

Simone: Adjusting to the sensory processing disorder sounds like it’s taken a lot of adjustment, not just for you Matt, but the whole family. How has the sensory processing disorder impacted you both socially with friends or extended relatives since the stroke?

Naomi: And I think as well, socially that’s really difficult because people like, we even have quite close friends and who probably look at Matt and think, oh, he doesn’t look that different. Like he looks okay, you know, at least he’s not dribbling. At least he’s still alive. At least, you know, whatever and it’s like, well, that’s true. But he’s very different now to what he was like before. And you might not see that in the 5 minutes that you see him when he’s at 90% capacity. But it is something that we are constantly, like every single moment of every day, we’re managing Matt’s environment.

Like if we do want to socialize with someone, we’re managing where that is. And a lot of it might go on behind the scenes and people don’t realise, but we’re saying, Yeah, come to our house because we know that when Matt is at our house, he is much more comfortable, and he can control the environment there. Whereas if we go out, we can’t do it. He can only last for a short amount of time. And if we do go out, then it’s managing. Okay, what has Matt already done today? What has he done yesterday? What’s he got on tomorrow? Can we fit that in? Do we think we have enough energy in the budget for him to be able to manage that in that situation? So, it’s sort of…might look like a duck swimming peacefully on the surface, but underneath the water where just constantly and frantically is paddling our little legs to make it seem, to make it as calm and easy for me to manage as possible.

Matthew: Our son going into high school has a friend. And so last year we went around to his friend’s house to meet his family. You know, we’d met them before but to spend time with his beautiful family and they’re so hospitable and lovely and prepared this amazing meal for us. But after like 20 minutes I was so dizzy, and my brain was shutting down and I had to like leave and go and lay on a couch for a bit. But then still lying on a couch in a different environment with different sounds in the house was just still so overwhelming and I just felt so rude and terrible. These people were doing the most beautiful job of hosting us, and I couldn’t cope in the moment.

And that’s really upsetting, and it’s been really emotional journey along the way. Just simple things like visiting people are now outside of the reach of what my capacity is. And as a social worker, that’s hard as well. Like my job has been socializing with people and speaking to families in their homes, supporting them. And now I just I can’t even talk to my friends in their homes for more than 20 minutes without getting dizzy.

Simone: So, so many changes and so much so many adjustments. And I think you’ve spoken to lots of learnings over the past eighteen months or so. How do you both support yourself? So with all of the changes, I’m curious just to hear both your perspectives on what are the things that you do to support yourself through, emotionally and practically, you know, psychologically, how do you how do you kind of navigate it?

Matthew: I think, um, I think we’ve thought about this for many years before the stroke anyway, like our mental health, our relationship with each other and our kids. And I think that we’re lucky that we’ve put in a lot of work in the years before the stroke because the stroke just kind of exaggerates what’s already there. So, I feel like we’ve got a really good foundation.

It’s still been really hard, but I think that we’re lucky that we have a strong, loving relationship with each other. You know, we have a good relationship with our kids and our family. That’s been a really important part of being able to navigate this because with all of the stresses of, you know, the extra stresses that this has brought along, if we had conflict with each other, all the other stresses, that would have put a magnifying glass on all of that. So, I feel like we’re in a good place when we had the stroke from, you know, being married for sixteen years and work and working hard to work through a lot of stuff and have a strong foundation and relationship with each other.

And then I think the first year after the stroke, I think it was just mostly adrenaline we were running off and hanging out the next day. It felt like every doctor appointment would give us the answer. That was the next one. Everyone said, yep, that doctor will tell you. And then we go to that doctor, and we wouldn’t get any answers, but I’d say, oh, the next doctor will give you the answers. And so, we’ve just been kind of… it’s been almost like a full-time job for me, just managing the medical appointments that I’ve had in the last eighteen months.

I’ve been in La La Land the whole time, so I think it’s been easier for me. I remember saying to the rehab when I was in there, I’m like, I’ve got, I’ve got a social worker, a psychologist, physio, O.T. speech, psychiatrist, rehab doctor, and I’m fine. I’m just like on a health retreat here, staying at this live-in rehab where, you know, they’re helping me think about eating healthy and exercise.

But my wife is at home. She’s just lost her husband. We’ve got no income. Kids are struggling. Like my 14-year-old son found me covered in blood in the bush and they’ve got no support. Like they need some support. I’m good. The rehab was…I mean, overall, I think there’s been limited support for Naomi and what she’s been going through. She’s been incredible all and just holding our family together through this time. I wish there’d been more help and support for her. The rehab was great that they got the social worker to come out and see Naomi and do some sessions with her and with my son. But overall, it’s been… it’s been tough.

Naomi: I think one of the things Matt just touched on…Matt’s been…and this probably goes to Matt’s character, and I’ll say what an incredible person he is and probably also his training as well. He’s been a big advocate of me. So even in the midst of what he’s going through, he’s advocating and saying to people, what about Naomi? Like, what support is she getting? He actually went and he saw that I was struggling, and he went and found me a psychologist to speak to.

And probably one of the big things that helped me speaking with a psychologist and just, you know, doing my own work was realising that even though we’re on this journey together, I actually have my own journey as well. And I don’t have to be stuck on this rollercoaster that Matt’s on. And I’ve actually got my own self-preservation and for the health of our relationship and also for our family, I’ve had to separate myself from it, realise that I actually have my own experience of this and that I can independently seek support for my own journey as well. And just not to ride… like I cannot ride Matt’s fatigue journey with him. I have to have my own separate autonomy from him and to be able to go, OK, Matt’s having a bad day, but I’m fine and I can keep going and I can do what I need to do.

So, I’ve had support from, like Matt said, the social worker initially. They were actually amazing. She would travel up from Newcastle to see me because that was that to support me not having to travel to Newcastle to see her. She saw my son. She supported me to support my son because they didn’t really want to talk to a stranger.

Announcer: If you or your loved ones need emotional or practical support after stroke. StrokeLine is here to help. StrokeLines allied health professionals provide practical, free, and confidential advice. They can find out what your needs are and refer you and your support crew to the most appropriate services call 1800 787 653, Monday to Friday 9Am to 5PM, Australian Eastern Standard Time. Or you can email StrokeLine@strokefoundation.org.au.

Naomi: I think probably the main thing that we’ve had to learn is just how to have boundaries in place and how to just be very strong in those boundaries and just say, I can do this, I can’t do this, this, and this. And I know I used to be able to, I know as a family, we used to be able to, but we can’t anymore because it’s just not worth it for us. It’s not worth it for us for Matt to just ‘suck it up’ in inverted commas and go to some party or function or something for a couple of hours and then be completely written off for a week and throw the whole family into turmoil. So yeah, I think we’ve learned to have very strong boundaries and, and, you know, just to stand up for ourselves and say, well, this is what we need and I’m sorry if that doesn’t suit you. But that’s what our family needs at the moment.

Simone: And so, I’d really like to touch on, I guess, the roles and relationships and how they’ve changed?

Matthew: Maybe I’ll start. I think before the stroke we had, you know, married for a long time, two teenage boys. We had a really good routine. I was working full time, bringing in pretty good money. And I guess the biggest thing of the stroke was that my ability to work and make income stopped immediately. I was very, very lucky to have income protection automatically included in my super but that’s like nowhere near what I was earning before.

And so all of that, I think that all of that pressure then shifted to Naomi because I was in La La land for, you know, still I’m in La La land. So, a lot of that responsibility, I think, shifted to Naomi to think about, you know, supporting, not only doing all of the roles she was already doing before, but also thinking about financially managing our family and also thinking about caring for me. So, my role, I think, went from being someone who was in partnership with Naomi and we were working really well together in our routine to…I just went to sitting on the sidelines and trying to just focus on myself in the moment, trying to cope and get through the day pretty much.

Naomi: From my perspective. I was working. I just opened my own law firm. I was in the first year of business. We’d already been impacted by COVID. I was financially supported by Matt, who had a stable full-time job. He was also working…he was running parenting programs in the evening. He was doing some casual work on the weekends as well. He was studying. He was taking the kids out. He would sort of take the kids out for the adventures and like playing that role in the family as well. I was trying to get a business off the ground. I was also studying my masters and what went from being sort of a just to a business that I was having a go at on the side suddenly became our sole source of income. And so, the pressure of that…

But the way I describe it to people is that I feel like someone just took this big heavy weight the day that he had a stroke and just made me carry it. Like there was no training, there’s no weight training, there was no preparation, there was no warning. It was just here; you have to carry this now. You have no choice. You can’t put it. No, you can’t put it down. You have to keep going. And at first, I thought, well, that’s okay because it’ll only be for a couple of weeks because we just had no idea. It will be for a couple of weeks. I can carry this for a couple of weeks. I’m a capable person, you know, and yeah, it’s just after I think it wasn’t until Matt was in rehab that we realised someone let it slip to us so that we were more looking at a two-to-five-year recovery period.

I suddenly realised that this was now my weight to carry indefinitely, and I still haven’t been able to put it down. The mental load of carrying it as well has just been so impactful and just yeah, like Matt said, like from my own carrying my own responsibilities, which were already quite heavy to then being, having all of Matt’s responsibilities loaded onto me at the same as well in addition to that. The other thing that I think I try to explain to people is that it feels like I’m now Matt’s safety net as well because there’s times when I think, OK, today he’s doing quite well. This week it looks like he’s doing a little bit better. Maybe I can hand a little bit, just a little piece of this weight back to him and he can carry that for a little bit, but without warning at any time he can drop that. I just have to be able to pick it back up again and keep carrying it.

Simone: This is kind of, I guess as you may have touched on its different ways, but, you know, it does sound like there have been significant difficulties and the relationships and roles have changed significantly. But, you know, as a couple and also as a family, have you experienced new or unexpected, positive or meaningful changes since the stroke?

Matthew: I like to think about this, that for the last 20 years, I’ve worked full time. I’ve had four weeks off a year through our marriage and having kids. I’ve had four weeks off a year. And I try to have those week breaks in the holidays to spend time with Naomi and the kids. And since August 2020, I’ve not worked. So, it’s been thinking about the positives. It’s been really nice to have space out of the work system.

And so, I’ve got to read a whole bunch of stuff that I’ve wanted to read for years and just haven’t had time to. And because I guess my rehab has been always pushing myself and doing as much as I can and at home, if I’m feeling really good, you know, I might not be able to mow the lawn in one go. I might have to split it up over three days. I might just be able to do a little bit reno in the house. And then if I can’t do that, then I’ll sit down and I’ll read. I’ve got to read so much, which has been really good. In terms of strategies as well, like if I can’t read, then I’ll try to play a computer game if I’ve got energy for that. If I don’t have energy for that, I’ll try to watch TV and if I don’t have energy for that, I’ll lay in bed. So I’ve kind of got like these multilayered strategies of pushing myself enough, like the Goldilocks principle. Not push myself too little, not too much, but just trying to find that just right balance where I’m trying to get better and get stronger without burning out.

I guess as a social worker studying social history, economic history and the history of Australia and capitalism, it’s been really nice to sit out of the system that I’ve been supporting families in for so long. Also watching myself as a client and a patient going through the health systems and navigating systems, I guess there’s been a whole bunch of learning and experiences that I’ve had that I haven’t had the opportunity to experience before when I was working.

I’m a glass half full kind of glass so I always see the learning and the opportunity and any experience. Overwhelmingly it’s been hard and it’s been a massive change and really difficult. I think that there’s been a lot of good that’s come from it, and the biggest thing is just being able to spend time with my family for the last eighteen months and then that time at home every day I’m there when the kids are going to school. I’m there when the kids get home from school. And I’ve got capacity now to hear about their day and I want to hear about their day. Before when I was working, it’s like my brain was full from the mental load of supporting so many families at work that I feel like I’m freed up of that now and I can just enjoy my family and that’s been the best part of this whole experience.

Naomi: Yeah. I think when Matt says he’s a glass half full kind of guy, that is so true. Like, he’s always just so focused on his strengths. Through this journey he’s changed in so many ways. But one thing that hasn’t changed about him at all is that he still looks for the good in everything and he tries so hard every single day. Ever since he had a stroke from then until now, I can honestly say, hand on my heart, that he has pushed himself to his limit every single day to get better.

He wants to get better. You know, he won’t accept, you know, if a doctor says, well, this is kind of he’s like, nah, I can do better. I can keep going. I want to keep going. And that’s just my respect for him, watching him do that every single day, has just grown. I think as well, like Matt touched on as well, I think it kind of helped us to look at what we’ve always been focused on this anyway, but what are our values as a family as a couple, as individuals, and really just focusing on what’s really important in life. And for us, it’s always been about relationships rather than just like being in a money system and being part of the machine. We always want to be focusing on relationship with each other as a family and with tour community as well. So yeah, I think it’s helped to really focus on those things.

Simone: Thank you so much for sharing, and I guess this question is a little bit for people that might be listening, that are experiencing something similar, that perhaps one of the people in the relationship has had a stroke. It might be a family or partnership. Would you have any specific advice, like if you were to give, say, maybe three pieces of advice, what would that be to someone that might be going through something similar?

Matthew: Number one, I think everyone’s stroke is different. Like the brain is so infinitely complex and no doctor knows where you had the stroke, whether it’s an ischemic stroke like I had or the other type of stroke. No one knows what that part of the brain does. Like, it’s just so complex, so it impacts everyone differently. So my number one advice would be to be kind to yourselves and to give yourself time as well.

Like Naomi touched on earlier, when we started this journey in hospital, it was kind of like they were talking about the next couple of weeks. And so, we thought this was going to be a journey for a couple of weeks, and then we thought that it was going to be for a few weeks and then a couple of months and then three months. I wish someone had just said to us at the beginning, t has changed your lives forever. Like you might recover back to, you know, 80%, 90%, 95% if you’re if you’re really lucky. But it’s still going to change your lives forever and just take time and be kind to yourselves.

Naomi: From, I guess, from a carer or a partner’s point of view. I think probably the biggest learning for me has been to understand that it’s okay for me to have a different experience of this than that. So, recognizing that this happened to Matt but it also happened to us and it happened to our family, it was a joint experience, but it’s also an individual experience as well. This is my own experience, and my own experience is vastly different from Matt’s experience, even though we’re in it together.

Matthew: Because people when Naomi and I are talking to someone, one of us might say Oh Matt had stroke and they might look at me and go, Oh my gosh, that must be so hard for you. I’m like, For me? I’m fine. I’m just being on a La La Land, going along on this adventure, trying to get better. It’s been hard on Naomi and she’s the one that’s had to hold our family together and organise everything and run around with the most extraordinary amount of pressure and stress to make sure that we’re all still fed in a house that’s holding together. Kids are still going to school, running the business. As time has developed, I’ve been able to pick up little things and go through periods of cooking and I’m trying to learn now as well, like how do I…meals and you know, of always got my top three meals that I can cook. Learning how to cook different things, thinking about the home, and organising things in the house and having to communicate around that stuff.

I guess before we had our roles that we would do. We worked really well as a team. But now Naomi’s delegating stuff to me and I’m not delegating. I’m kind of forcing stuff on her because I just don’t have the capacity to do it. So, she’s got to pick it up and I might be giving her advice about, you know, things that I was doing before and it’s hard.

You know, we’ve had through all of that, like any relationship, you have ups and downs. You have good times and hard times. You have arguments and Naomi gives me a lot of space to go, OK, Matt’s had a stroke. He’s got a brain injury is not coping. That’s okay. But then at the same time, I give Naomi a lot of space because I know that she’s now got a husband who has a brain injury. She never signed up to this. She signed up to marry a man who was fit and strong and working full time and had a career. And now I’m a little bit broken but also awesome in different ways. So I’ve given her space as well and just communicating about things and being committed to forgive each other in the hard moments because it’s really … like life is stressful enough.

Having a stroke is like a magnifying glass on all of the stresses. And it’s really easy to get stressed out and to flip the lid and get upset. But the most important thing is just to, you know, I guess forgive quickly, hold those things lightly and move on because it’s going to be hard. Life is hard. Stroke makes things a lot harder. But there’s still so much beauty in the world and beauty in the things that we do every day. And I think having the strokes help me to really slow down and be grateful for the little things in life and enjoy the little things and the little moments in life.

Naomi: I think the other thing we’ve touched on but we haven’t sort of articulated is that it just threw our life into uncertainty. Like it was suddenly everything was uncertain. There was no like stable ground underneath our feet anymore. And I sort of tried to describe it to people that it’s sort of like walking on a sandbank that suddenly just can give way under your feet of any at any time.

It’s like this ‘shifting sands’ kind of analogy. It’s so difficult for my personality type in particular to accept that the only constant is that it’s now completely unstable and it’s just constantly shifting and changing. And then just uncertainty is now part of our everyday lives and learning to be okay with that as well.

Simone: It’s been really such a privilege to speak with both of you. I feel really grateful to hear your experiences. I know that other people are really going to take lots and lots of the advice and tips and just your experience in general away and be able to learn from it. So thank you so much, both Matt and Naomi, for being on the show and for just being so open and honest in your experiences so far on Matt’s stroke recovery journey.

If you found this episode helpful, please share it with your family and friends. Subscribe to the podcast to be notified about future episodes and leave us a review so more of the stroke community can find us. A big thank you once again to you, Matt, and to Naomi for being on the show.

Matthew: Thank you for having us Simone and for all the work that you do.

Announcer: That’s all for today’s Young Stroke podcast. Find out more about Stroke Foundation’s Young Stroke Project by visiting youngstrokeproject.org.au. You can listen to dozens of other podcasts on our stroke recovery website, enableme.org.au. StrokeLines 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 health care professionals. The Young Stroke Podcast series is presented by Australia’s Stroke Foundation and funded by the Australian Government Department of Social Services.

This podcast was produced by Joy. Australia’s Rainbow Community Media Organisation. For more information on Joy’s services visit Joy.org.au.