Parenting after stroke can be really difficult. As a young survivor of stroke, you're trying to recover from a serious health incident. But if you're also a parent, your responsibilities for them do not stop. Young survivors of stroke talk about the challenges they faced with parenting after stroke and the effect on their family.
Transcript
Carly: Parenting after stroke is very difficult because you're trying to recover from a serious health incident. But you have little people who are there and you’re responsible for.
Laine: I’m happily married for 20 years with two young boys or two boys, 17 and 14. I had my stroke nine years ago. I was in a, I was pushed into a wheelchair. And I remember my youngest walking behind me in his pajamas. And he was crying. I was crying. I was in the stroke unit for about a week and I was just busting to get into rehab.
I knew that was my goal, to get home for my boys and to the family. So I thought that's what I need to do, so I need to smash out my rehab.
Jodie: How did it affect my family and parenting. Well I know it has affected because it had to at the start. But you see that both the kids have risen and they have chosen to get a hold of me and to guide me. Before I was really taken away from them because I had that inbuilt “I've got to study, I've got to study”. And that went on for ten years. So I was always at the books myself and missing out on, on things that the kids were doing.
Well, my daughter’s moved down, moved back from Queensland. And my son, he's an ambo. He's a paramedic. And he just would come in and you know, every patient he brought in, he'd bring the patient in and get themselves sorted then he’d come over and see me.
And that was a huge, huge help.
Toni: When I had my stroke, my youngest daughter was in, I think Year 11. And so she sort of has supported me a lot since then because she's at home whereas my eldest daughter, she's moved out of home. So, you know, she's married, got her … and things like that. So she does what she can do as well, but. And my son helps out as well.
Shannon: My daughter was 16, Gemma. And my son was 17 at the time. And he slept through the whole ordeal. So we cried a lot that evening. Before my stroke, we were a bit living separate lives. The children. So we made a point of going out once a month to the movies or to the city after my stroke.
Carly: I remember being told at some point in those first couple of weeks, the most important thing I need to do at this point is rest. It's very hard to do with two small children in the house who don't fully understand what's going on. But also their behaviour had shifted and it was in response to the distress and stress that was put on us.
When you're trying to rest, that's very hard when you've got an infant that wants to just be held all the time.
Paul: I'm very noise sensitive, like really noise sensitive. It's got better as time has gone on, but I have a vast collection of earplugs. Well, my youngest is about to turn three, and my oldest is about to turn seven and two little kids on floorboards first thing in the morning doing normal little boy stuff, high-pitched, squealing. You have to peel me off the ceiling.
And I just become this irritable mess. Like, the two year old looks at me and just goes, “You're being a bit immature.” Like, I really do. It goes sideways, and I'm not even conscious of it until my wife points out to me and says, “Hey, that's not cool. You can't say and do things like that.” And it's something I'm continually trying to work on and get control of.
But again, when my fatigue is high, my reserves are low, and therefore that side of the stroke stuff comes out.
Laine: Post-stroke I think I've had to reevaluate, and sort of, yeah, reevaluate where I put my energy because fatigue is such a high and such a big, important thing in my life that I've have to manage my time better. And sort of focus on things that I love doing and spend time with people who I love and who bring joy into my life.
You can have that day or that week or that hour, whatever it takes you to process that through. For you to gain the sort of strengths that you need to then carry on with your day. Whether it's working or looking after kids, etc.
Carly: When things were very hard and fatigue was at its worst point and I pushed myself too hard, we all suffered because I couldn't cope. And so we had some very hard learnings around me needing to slow myself down across all facets of my life.
Brett: You know, inclusion is really important. So incorporating your family unit, so making sure, you know, your children are involved in celebrating those milestones and in riding the journey with you and helping to reflect on all of that, because together you are a lot stronger.
Laine: I've got two boys, teenage boys, and that's tough in itself. But just be able to spend time with them, just family is so much more important at the moment. I craft and make family albums so then I can pass on to my boys our family memories, which I think is really important.
Carly: We found that we were much stronger and we got better outcomes when we were working together as a family unit. I also did something else which I was conscious of and now in hindsight I realise the significance of it. Every day I try to spend quality time with each of my children, even if it was only for 15 minutes. And knowing that it might exhaust me on the other side. But spending that time with them and then giving me the appropriate or necessary recovery time afterwards was really significant in terms of maintaining their wellbeing.
Communication is key. Try to maintain as best as you can even a small snippet of routine. With the older child, we decided to be transparent within the realm of what an eight year old could comprehend at that time. We didn't hide what was happening. It's impossible to hide what was happening. As we know, children always understand and observe so much more than what we might be aware of sometimes.
It doesn't happen as often now, but every so often he might just blurt out with “Mummy, will you have a stroke again?” So you can see that it's still in, plays on his mind. And he still worries about it. We needed to then work with him on the worry, and working through the anxiety. And anxiety was high across our whole family unit, so we collectively had to work on that. Most important thing for us is to make sure that we are proactively supporting and helping them with their individual challenges as they develop.
