Parenting after stroke

Episode 10, 23 February 2023 (Duration: 21:55)

Guests: Letisha Living and Shannon Nelson

This is the second episode of a series with Letisha and Shannon, both young survivors of stroke. In this episode they share the changes and challenges that came with parenting after stroke. They also discuss the impact of stroke on their children.

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.

Podcast transcript

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 the Young Stroke podcast. There are over 120,000 Australians of working age living with the impact of stroke. People whose lives have been interrupted by stroke as they are entering adulthood, about to start a family or mid-way through their journey into parenthood. Today we're speaking about an important topic to younger survivors of stroke - Parenting After Stroke.

Today on the podcast, we have Letisha and Shannon back with us. And if you haven't listened to their previous episode on Finances After Stroke, please do go and check it out. Stay tuned too for a third episode with Letisha and Shannon as they'll be back to talk with us about Confidence After Stroke.

Letisha Living is a young survivor of stroke, a mother to four boys, one of whom was born after her stroke. Letisha’s from the Gold Coast Australia and is passionate about empowering working age survivors. Letisha Living is the author of Finding Yourself After Stroke.

Shannon is a nurse, wife and mother of two. Shannon previously nursed elderly patients who 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.

Simone: Welcome back to the podcast Letisha and Shannon.

Shannon: Thanks for having us.

Simone: Thanks for being with us. So Letisha, could you share your parenting story with us?

Letisha: Sure. So, I had my stroke ten years ago. I was 35 at the time. At that time, I had three children; they were aged 11, 12 and four. When my stroke happened, it was in the middle of the night and I was sleeping next to my four year old at the time.

So things kind of changed for us. I had a young boy in childcare and I had two tweens that were not quite teenage boys at that time.

And then two months after my stroke, I found out that I was pregnant. So, I had what I call not just my life before and after stroke, but my parenting before and after stroke.

I worked full time, and so my three kids that I had at the time, they went to... one was in childcare full time. The other two were in school. So they went to before school care, after school care and on holidays, they were at vacation care.

And so it wasn't until I had my stroke where I kind of dived into the deep end of being a stay-at-home mum. But then it was also being a parent, a stay-at-home mum with post-stroke challenges. So, disabilities, I lost my vision in my stroke, so I've got neurological vision loss. And then that means that I lost my license, I couldn't drive anymore. And so, the mum that I was, who I was before my stroke and who I was after my stroke in terms of parenting really changed.

So, even though I was working full time, I could drive my kids to, you know, before school care. I could duck out from work and attend school functions. I took them to their sports, I could drive to their sporting things on the weekends, and then suddenly I couldn't do that anymore. Parenting life did change a lot after stroke.

Simone: Shannon, could you share your parenting story with us?

Shannon: So, my children were 16 and 17 at the time of my stroke. And Stuart, my husband, tried to keep everything normal, so they went to school the day of my stroke.

Gemma woke Shaun up at about 7 a.m. and said... my husband called Gemma at 6:30 in the morning to say I'd suffered a stroke. And then Gemma woke Shaun up and said, “Mum's had a stroke, what do we do?”

And so Stuart told them, “Go to school.”

And then when I was in hospital, they went to work, school, every day and that sort of thing. So, yeah.

Simone: Your children were very involved obviously even from that moment that you both realised, or knew you were having a stroke. And as if recovering from a stroke and dealing with the impacts of stroke isn't enough, you know, that added stress of parenting, I imagine, you know, was just huge at the time, particularly as you're coming to terms with the fact that you've had a stroke.

What were some of the biggest challenges or what are some of the biggest challenges with parenting and navigating parenting, having to consider somebody else's needs on top of your own?

Letisha: To me, the biggest challenge I've had is not being able to drive. So when the kids need something or we have appointments or, or anything, just that loss of independence has been really quite huge.

And fatigue. Post-stroke fatigue for me was quite a big challenge. So, as I mentioned just before, two months after my stroke, I found out I was pregnant.

So, my recovery was also creating a child. So, I was really quite tired. Slept a lot. And then after the baby was born, I was still recovering.

Yeah, spent quite a lot of time on the lounge.

Shannon: I was fortunate enough, I began driving after eight weeks, but my aphasia and my fatigue also. So, the biggest challenge was when I, my family had to be around when I made important phone calls.

So, when I was talking to the bank or talking to the telephone companies, I had to make sure my family was around because I have aphasia and apraxia. So, I would have to explain, because I, because I was making a telephone call I wasn't on the video chat. So, I explained to them and they had to explain to the operator.

That was the biggest challenge and the fatigue. So, yeah, I went to bed every day when I got home for half an hour to 40 minutes. Every day, I had a sleep.

Simone: And Shannon, do you mind describing what aphasia is and apraxia?

Shannon: So apraxia is difficulty planning and coordinating the muscles during speech. And aphasia is a language disorder that involves communication, reading, writing, numbers.

Simone: Thank you. And so, what other ways did having the stroke impact on the way you parented? Maybe some of the practical challenges or difficulties or things that changed, Letisha or Shannon?

Letisha: Well, for me, I had to rely on public transport or paid private transport whenever we needed to get around. We really had to plan ahead with outings. I had to move because where I lived there wasn't public transport. So, I had to move closer to the shops and things like that so I could get about. So, now I can walk my kids to and from school and just go down to my local shops and get the things that I need, which is very, very helpful.

But I mean, I couldn't move immediately because things quite changed. It was about two years before I realised I needed to make that shift and it's just been better on all of us that we did.

So, I do my grocery shopping and things like that online, and we're just so fortunate now that everything pretty much can come to us. So, even on the days when I'm really fatigued and, and that's it, I just don’t feel like cooking because I'm sensory overwhelmed and tired, we can order UberEats or order something to be delivered. Yeah. Just those little things that made a difference.

I just... I released the expectations that I had of myself. So, prior to my stroke, I was very, I guess, disciplined in my day to day. I had to be at work a certain time. Everything had to be done before we left, so we'd get up, there was a routine, went to work, come home, routine.

That didn't happen after stroke. But then I still, in my mind, I had this, “You should be doing this, you should be doing that.” But I didn't actually. I didn't have to be doing these things. So, things like housework, you know, it doesn't matter. Like, if you're doing the laundry and you're tired or whatever, it doesn't matter. You can fold it up the next day. It's still going to be there. So, just releasing that pressure that I had on myself around the house.

Simone: Did you have that too Shannon?

Shannon: Yeah, I had that too. My mum helped me out in the first few months because Stuart had to return to work. And my children, I taught the children to do a load of washing and they used to clean up after. So, I began cooking after six weeks. And then Stuart used to always do the dishes, but the children began to help out doing the dishes, folding the washing.

Simone: So, your children had to sort of step up, to help out. Did you find that too Letisha, where your kids were having to do more than they might have before the stroke?

Letisha: No, no, in my circumstances, they didn't. And my youngest one was four. I had this, you know, it was probably my fault that they didn't step up because I didn't expect it of them.

You know, I still had it very ingrained in me that this is my role as a mum and it's my job to do this.

And when it came to the little one, I didn't want any expectations or pressure on my older two to care for him because all his special needs and I just didn't think it was their responsibility.

And I still don’t think that it’s their responsibility to do that.

Simone: And quite different ages, too, Shannon and Letisha, your children were at sort of opposite ends in terms of ages. What about ‘mum guilt?’ You know, it can hit us at the best of times, but how has that been after having both of your strokes?

Shannon: Well, I felt really guilty because I focused on my recovery and myself. So, I felt extremely guilty because I think the world revolved around me for six or nine months and I felt really guilty about that.

Letisha: Yeah, I had a lot. Well I just seem to just have parenting guilt anyway, so add a stroke on top of that and it was, like, just increased that feeling. I don't have it any more because I just keep releasing the expectations and knowing that regardless of what's happening, I'm doing a good job. My kids are happy, they’re healthy.

We love each other. Everything is great. Really, we're doing a lot better than sometimes I think we are.

But I did, I did feel like, not just a failure as a person after my stroke, I felt like a failure as a parent as well because I couldn't do - and that's what I was focusing on, all the things I couldn’t do, prior to my stroke, like driving them around, playing games with them, like I couldn't even throw and catch a ball at that time.

So, it was, I'd used to sit on the floor with my baby and roll the ball. So, lots of things changed. But then I realised it was probably me that was harder on me. They weren’t hard on me, it was just me. So, I didn't have to keep pretending that I was okay on the days that I really wasn't okay.

And just releasing, I think the guilt, most of it just comes with releasing those expectations.

Simone: And obviously, the stroke affects everybody, the whole family unit, everyone around you. What do you think the impact has been on your children? What has it been like for them? What would you share around their experiences from what you know and understand?

Shannon: I think my children are more accepting of people with disabilities and more empathetic and much more resilient than I used to think before the stroke.

Letisha: Yeah, prior to my stroke I worked in aged care and there were times where I took my kids to work with me, and so they did get to see lots of people with disabilities. But I do imagine it was different for them to see that with their mum.

But I hid it. So, I hid from them everything I was feeling. I hid from them the challenges that I was having. And I tried to make life just the same so that they didn't feel or see those impacts.

Shannon: I was much more different. I had a meltdown about eight weeks after my stroke and I went to get a mental health plan because I couldn't say the word ‘monotony’, but it was the straw that broke the camel's back.

So yeah, I was much more open to my disability in the home, but not out in public.

Simone: And did getting that help and that mental health care plan really make things easier to manage both personally and as a parent?

Simone: Yeah. Yeah. So, we did a family session also, so that’s really helped me see that my children were okay. So, yeah.

Simone: And are there any other supports that you've found helpful along the way or lack of support. I'm curious to hear of anything else that was helpful.

Letisha: I'm actually just grateful for the technology that we have now so that we can bring things to us, in my circumstances, because I can't drive. So, it's very, very helpful to have everything on Apps and UberEats and shopping can come home and that I found incredibly helpful.

Simone: And was there anything else? Did you connect with friends or peers or anybody else that helped give you tips or share anything that made the journey a little bit easier to navigate?

Shannon: I contacted StrokeLine and I also joined a young support group for young stroke survivors as well. That really, really helped to know that I wasn't alone and they, or the majority of them, had children as well.

Letisha: I joined the stroke, some online stroke groups, and that really helped me to connect with others. But I have to be honest, I haven't really had many chats with people about parenting and what things that they have overcome or challenges that they've had, which I think I probably will going forward.

Some things that I've found that could have been helpful to me, but not actually helpful for me as a parent, was, for example, I could have Meals on Wheels be delivered to me at home.

But then I had a 12 year old, an 11 year old and a four year old, but that wouldn’t have been for them, so I still had to cook anyway. So, there were some things that could have helped me but didn't actually benefit me as a parent.

Simone: And if you were to share three top tips for somebody else, that might be navigating parenthood after stroke, what would they be?

Shannon: Don't sweat the small stuff and keep the lines of communication open.

Letisha: And yeah, I'm quite similar to that too. I would definitely be saying don't be hard on yourself, you know, you just do the best that you can do that day and release the guilt.

Release the “I should be doing this, I should be doing that.”

And that things just don't have to be perfect. Like, we're not here to make our neighbours or our community happy. We're here to look after ourselves and our kids, so, it doesn't have to be perfect and it's okay for things to change.

Simone: I love that. And it sounds like Letisha, too, you've done a lot of that sort of navigating the parenthood journey on your own, figuring out what worked and what doesn't work.

And the same with you, too, Shannon, you know, seeking that mental health care plan was something that you felt you needed to do to help support yourself and calling on family when that was needed.

Is there anything else you want to add on this topic of navigating parenthood before we wrap up?

Shannon: We try to do things as a family, once a month. My children are 20 and 22 now, so we try to do things as a family once a month and then I always check in with them on a daily or weekly basis just to have a chat about what's going on and that sort of thing.

Letisha: Yeah, we do something very similar as well, so we catch up minimum monthly, so more than once a month and have a dinner.

So, my older boys are now in their early twenties as well and keeping those lines of communication open. So, I did a lot of hiding and pretending, so, now I'm telling them this is what happened, this is how I was affected. And I'm also sharing that and being very open with my nine year old who has only known mum as a stroke survivor.

Simone: How do you feel it's different for your children, Letisha, say your youngest son, who only has ever known you as a survivor of stroke, well, after stroke? And compared to your other children, do you feel like there are quite noticeable differences in that particular child's experience?

Letisha: Well, he doesn't notice. This is all he’s ever known, but he's quite a well-adjusted, happy, happy, very outgoing, good self-esteem kid.

So...it's...we've never been able to get in the car and go for a drive. He doesn't have that experience. He wouldn’t know that. The experiences with the older and the younger would be those things, the way that the stroke impacted me. But, no, I don't think, I don’t think it's impacted him at all.

Simone: And in terms of supports for your children, have they needed any particular supports to help them manage, you know, the fact that you've both had strokes?

Did you need to access any extra support through school or through psychology, for example? Or is it really just that close connection with them and those, sort of, open conversations?

Shannon: My son was doing Year 12 at the time, so we put in a SEAS application. It's got to do with difficulty with life during Year 12.

Simone: Last call. Is there anything else that we've missed that you want to add in?

Letisha: You know, it doesn't matter if you don't put the laundry away for a few hours or till the next day, like that just doesn't actually matter in the big scheme of things, even though I like to have things organised, it doesn't matter.

Simone: And has the stroke taught you that? Like that releasing the expectations?

Letisha: Yeah.

Simone: Yeah. And you talked about that too Shannon didn't you? That it's like, if the room isn't tidy or... Yeah. That you don't sweat the small stuff either.

Shannon: Yeah.

Simone: Yeah, yeah. Okay. Thank you so much for sharing.

If you're feeling overwhelmed and need guidance to navigate parenting after stroke, you're not alone.

You can speak to a social worker or psychologist if you're in hospital undergoing rehabilitation. And if you're at home or in the community, speaking with your GP is a great place to start. Peer support groups can also be a great source of support, as Letisha and Shannon have mentioned.

You can go to enableme.org.au for more information on your nearest support group. But you can also call StrokeLine on 1800 787 653, Monday to Friday 9a.m. to 5p.m. Australian Eastern Standard Time or email strokeline@strokefoundation.org.au

Thank you for being on this episode, Letisha and Shannon.

If you found this episode helpful, please do 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.

Thank you so much, Letisha and Shannon for coming on this episode and talking about parenting, the challenges, but also the rewards I think of parenting after stroke and I look forward to chatting next time about confidence after stroke.

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 enableme 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.