Transcript

Kylie: In April 2020, my husband had a stroke. He was 49 years old at that time. So, the end result was that he did lose the use of his right side, so his right arm and his right leg. And then he spent about five weeks as a rehab in-patient at Monash in Kingston. So then from that point when he came home, then I was kind of 24 by 7 care at that time.

Given that sort of COVID period we were in at that time, it wasn't really possible to have other people coming to the house and helping out. It was very much a solo kind of arrangement. He came home in a wheelchair and he was unable to walk and get around himself. And then ultimately things have resolved a lot better.

He's not fully regained the use of his arm and his leg, but he's able to walk. It was a real shock in so many ways. It could have been so much worse in that he could have died. I think if he'd gone to sleep that night, he probably would have died. So I think that shock just reminds you how much the person means to you. That was the first thing.

Then it was the first sort of three days when you're wondering what's going to happen and just that that terror sort of feeling. Then you're putting yourself in their shoes and saying, I can't even imagine what I would do if that was me. In the first five weeks Scott was in the hospital, I knew he was in the best place he could be if something else bad was going to happen, and that was that. I could just I just had to trust in that. I could not see. I couldn't. I didn't have the first clue about what it meant for us.

I reached out to a lady and she'd written about having a stroke in her forties, and I found her on Twitter and we chatted a bit and she said, You just need to find your tribe. You've got it. You need help to get through this.

It's fair to say that first week I was terrified because I was thinking there was no safety net anymore. There was no nurses or people to help. It was just me. And I was like, that was just really, really scary. And I felt really ill-qualified for that first week.

In a lot of ways, it brought us closer because we were fighting for the same thing, you know, we were really oriented. It was, you know, as a team towards what is the next thing we need to do? What help can he get? How will rehab in the home work? And you’re total rookies, you got no idea how the system works because even just the logistics of managing, of understanding how the NDIS works. It’s a whole world, there’s a whole language you don't even understand.

There’s so much about the recovery that you don't know and no one can tell you that you often do a lot of things yourself just because they make sense. So he told me that the two things he was thinking about in hospital was I want to be able to go swimming at the beach again and I want to be able to play golf again.

And that seemed so far beyond the realms of anything because he couldn't, couldn't get out of bed. So you could kind of anchor around a couple of those things. From early on, I would put the golf club in his hand and wrap his fingers around it just so he could feel the, the feel of it. I think he had, I just had to be the cheerleader, you know, do this thing and let's see what happens or if he's tired, go have a sleep because he would fight the fatigue as well.

“I’m gonna fight through the fatigue”. I go, I don’t think so. I think you should go to bed. You know, the one thing that I noticed from very early on was there was something that we found to laugh about every day. And it's just like it's just weird, dumb stuff. And it just takes the pressure off because there are some days when it's horrendous.

So in a lot of ways there were so many more really here and now things for us to focus on. Like, let's see if we can get you walking again. Let, you know I would restructure all my diary so I could drive him to appointments, eating healthy food. The first time he walked to the letterbox, you know, all of those sorts of things. All of the big things that we might have thought about before, like having nice holidays or whatever, were just gone.

But I did grieve for things. I thought as I just cancelled holidays and you know, I put the golf clubs in the garage. There was so many things back then that I couldn't fathom about how would we ever get on a plane again? How would we ever go anywhere? You know, it was so elemental for the first few months that it was just like, this is completely different.

And I wondered how I would ever have a break as well. I felt like there was a huge difference in my life forever now. And you couldn't, you couldn't know whether it was going to get any better or just stay the same, or maybe even get worse. I didn't get any support in place for myself ever, and that was a big mistake.

I remember there were Sunday evenings, you know, you're trying to get your head around going back to work. And I would just be sitting on, or even Friday night, sitting on the floor in the kitchen just crying because I didn't know how I was going to deal. It felt like I was still doing full, full on work job. And then I was doing the after hours, sort of helping of everything.

And you come to the end of the work day. Admittedly, I didn't have the commute. But you'd walk out and go, alright cooking needs to be done, the dishes need to be unpacked, washing needs to be put out, cat needs to be fed, dog needs, the dogs need to be walked.

You know, all of those things were still there at the end of the day and there wasn't any other option to get much in the way of help. I should have done more with my mental health, but what I did, which was probably okay for me in a one way sense, was I did connect up a lot with Facebook groups.

For, you know, there's a lot of Facebook groups that stroke survivors and their carers. I wish I had joined some kind of group that we could talk to people, you know, once a week or whatever and just sort of get that kind of help. Find your tribe of helpers and find your, you know, find support people. But do it early, don't, you know, don't do what I did, you know, because you don't prioritise it either. I've got so much to deal with. I'm not going to stop and start talking about this because I'm on this express train of just getting everything, getting through every day. I still have things for myself. So I would still go out and do my run.

I still had that and that was my thinking time. My out of the house time, my, you know, breakout in a sweat. I would say that as well. Can you have one that one hour or that one, do one thing like that? And whether that I guess, whether that is having a nap or reading a book or, you know, going for a walk with the dog or whatever, that was it’s just to get your head out of the four walls that you're in.

Work was very much a good distraction as well.

It's very engrossing to be it trying to do your normal day job, particularly when he was in hospital, I could only visit for an hour a day. I had 23 hours of the day, where I was like, Woah. When I'm all by myself in this house, what am I going to do? So it was good to just be, you know, dealing with real world sort of problems and the normal stuff.

I think in terms of overall wellbeing, I'm much better off than I was before he had his stroke. In some ways. I wonder whether I'll think this has been my real decade to grow up and I don’t think it would have happened if he didn't have the stroke. But I just think I've made the best of it I reckon.

And I just don't want it to happen again.

I couldn't. That's the thing I fear the most. Is it happening again. And, all of that resilience and just unbelievable hard work that he has shown to get where he is now. If I had to start all over again, I don't know how I would go. So I don't think we can do anything with that fear other than just kind of keep rolling along and making the best of it.

If you've been through something that's really hard, you don't want someone else to go through it. It sounds cliche, but if you could say something that made them feel better and I was, my biggest thing was just find people. Find your support crew for you. Don't you just focus 100% on helping the person who suffered the stroke. I'm definitely more invested in it and I think that's also the payback of feeling fortunate is like, I've got to do something about this. And we've been sort of tinkering around, looking in the areas of supporting other people who have had strokes, trying to create that coaching environment for people.

You know, what if you could have a one on one. What if Scott to be someone's coach for that person who's six months out from having a stroke and they want, not just someone to take them to the park, but someone to talk to them about how it feels on the inside and what are the things you can’t say.

And he really wants to do that because he knows how good it would have been for him to just talk to someone who was not a 70 year old who seemed to have bounced back perfectly, but a 49 year old who still felt like he had a heap of life to go and what was he going to do? So that's kind of like he's trying to make that more connection on a human lived experience level.

And I’m trying to go, as a corporate person, what could we do better? Other than getting some help I don't think I would do anything differently because it really, I really approached it as a let's just get through today and tomorrow and don't make any, don't make any plans and don't set any time limits or anything. And don't assume that everything that everyone tells you is right and no one really knows.

So the only thing I would have told myself back then is something that no one could have told me then, which was we'd be where we are now because no one knows. You know, he might not have ever been where we are now and that, you know, the best thing, the best thing that he could do was focus as intensely on his rehab as he did.

The resilience that he has shown in the face of that has been the thing that spurred me on. If someone said to us very early on, don't compare your life to how it was before. Now just compare, you know, your milestones as you go. Now, I just think we've got a different normal and we're more grateful than we ever were. You know, it's like you've got a second chance so you don't go, you know, dwelling on everything that could have happened.

We're healthier than ever and we talk more openly about things than we ever did. And we do have a laugh every day, and we do just enjoy the things like just going, now we can play golf together again. This is amazing. So that's what I mean. It's different, but it's still good.

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