Parents of young stroke survivors

Episode 4, 1 December 2020 (Duration: 17:13)

Guests: Kim Beesley
This episode explores being a parent of a young stroke survivor. It can be a huge learning curve, knowing what to say and do, how to be there for your child and how to look after yourself at the same time.

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 healthcare professionals. This series is presented by Australia’s Stroke Foundation and funded by the National Disability Insurance Agency.

Simone: Welcome to the 4th episode of the Young Stroke Podcast series on recovery. Stroke happens in an instant and changes the lives of survivors and their families. For parents of young stroke survivors it can be a huge learning curve. Knowing what to say and do, how to be there for your child, and also how to look after yourself at the same time. This podcast episode is for the parents. Today, you’re going to meet Kim Beesley from regional New South Wales. Kim is a teacher librarian, newly appointed member of Stroke Foundation’s Consumer Council and mother to young stroke survivor Emma. Welcome Kim. It’s wonderful to have you on the podcast.

Kim: Thank you, Simone. I’ve enjoyed listening to the other three podcasts immensely.

Simone: Oh, thank you, Kim. So Kim, could you start by sharing your story of your daughter Emma’s stroke?

Kim: Sure. Emma was 33, a lawyer, and one day she woke up with a bad headache, didn’t go to work. And that later that evening collapsed in the bathroom. When she went to the hospital, it was pretty obvious that she was having a stroke. She couldn’t communicate and was quite out of it. Unfortunately, when that happened, her dad and I had just arrived in Lisbon in Portugal to begin a holiday. The people who she was with had to make some very quick decisions. And her younger sister had to take the role of being a parent. Unfortunately it took us a few days to get back to Australia, and once we did, it was pretty much from then on we stayed with her for the three and a half months that she was in hospital. She was left with right-sided paralysis and had to learn to walk again, talk again, and it was about nine months after her stroke when she really came to terms with the fact that she had aphasia.

Kim: Aphasia is the loss of communication caused by a stroke. It’s not a loss of intelligence, but it’s a loss of language, loss of words, and that made it another double, sort of more than a double whammy. She had this invisible disability that was really hard to cope with.

Simone: Wow, Kim, that’s huge for you to be so far away and have something so life-changing happen. What was going through your mind at the time? How were you feeling particularly in those early stages after Emma’s stroke?

Kim: My husband and I were just in shock, disbelief, trying to get communication with home, trying to find out the severity of her stroke. It was really difficult, especially with the time difference. So it was totally unexpected. We actually had stayed with Emma two nights before she had the stroke, the day before we flew out. So yes, unbelievable is how we felt. And we really just struggled around in a fog for several days until we managed to get home.

Simone: I can only imagine so, so frightening for you both and for Emma as well, having her parents so far away, I’m sure. And if you’re open to sharing, how did your relationship change with Emma after her stroke?

Kim: I suppose instincts kick in and the role of a parent never leaves you, no matter how old your child is. And I think we just became advocates for Emma fighting for every little thing, just trying to take over things that were happening, but spending as much time as we could with her. And as it turned out, fortunately she’d given me power of attorney. So we had to deal with lots of legal things and it was just a bit of a minefield, but yes, it was a different relationship and that mothering instinct never leaves you. And you’re just constantly worrying about them, no matter how old they are.

Simone: And the sense though, of just knowing what had to be done and what you really had to step in and do. And your husband, did your relationship with your husband or other family or friends? Did you notice that they changed as well after Emma’s stroke?

Kim: Yes, relationships do change. It’s difficult. You’re all coping with different emotions and trying to get along. Emma’s sister was brilliant, she had to step up as a parent and it was difficult for her to have to parent us in a way. It was hard on Emma’s grandparents who felt guilty almost for still being around and having it not affect them. Even myself, I would have swapped places with Emma in a heartbeat. I just felt it was completely unfair for someone of her age, with her life ahead of her to have to go through this process. You’re under a lot of strain. You go through depression and lots of difficult thoughts and feelings.

Simone: And everyone managing their own experience and thoughts and feelings about the situation. You talked about your husband and you being away in Portugal at the time of Emma’s stroke, so you just retired at the time of her stroke, your life was perhaps slowing down or shifting. How was it realizing that things were going to look differently to what perhaps you had planned?

Kim: Well, my husband had retired. I was planning to go back to work just at a part-time basis. So luckily I was able to take a good amount of leave, but yes, it was not the way we expected our retirement to begin. But you just have to go on, you just have to jump in and it was hard, but we tried not to dwell on it too much or make Emma feel bad about it. It was harder for her than it was for us. She had to come and live with us initially, she couldn’t drive, she relied on us for everything and that was really difficult. Because she’d left home at 18, and had traveled the world, had lots of great experiences living in different places and having to move back home with mum and dad wasn’t easy. And she hated relying on us for everything. So yes, the little bit of discomfort that we went through was nothing compared to what she was going through.

Simone: And so you’ve already talked a little bit about perhaps the new normal after Emma’s stroke, but did you want to share a little bit more about what your new normal looks like now? A few years down the track?

Kim: Well, a few years down the track, we’re all in a much better place, mainly that has been because we have come to accept Emma’s disabilities. We’ve also come to terms with them and Emma herself has been able to regain some great independence. And with that, it’s enabled us to feel that we can continue to live our lives without relying on looking after her. She’s now able to drive. She’s working part time. She has a friendship group and all of those deep dark thoughts and those depressive days are hopefully mostly behind us as her progress has improved.

Simone: Yeah. That’s really nice to hear. And I’m just keen to find out what do you see as the biggest challenge for you as Emma’s mother? So the mother of a young stroke survivor. If you were to sort of put it down to one or two things, what would be the biggest challenge for you?

Kim: Well, the first challenge was accepting the shattering of a dream that you anticipate your future of your children. You expect life to follow the usual pattern, go to university, if they’re able to, get a job, get a career, a partner perhaps, marriage, children, and to have that dream shattered was a little bit hard to cope with. At first, I think I was sad for that loss, but it’s also necessary to keep yourself trying to be positive and encouraging, especially during that dark time because if you make your feelings look to the fore, it’s harder for the person who’s the stroke survivor, to try and be positive themselves. So as she accepted her new self and her post-stroke person and made some gains, it was easy for us to do the same.

Simone: And what has been the biggest help or support to you as you’ve sort of navigated this role of being part of Emma’s core support?

Kim: Oh, there’s a few things. Not only the support of family and friends who understand what we’re going through, seeking out good practitioners who you can trust, who will give Emma the best advice and best therapies possible. Having a great team can help make a big difference. Just navigating all of the issues that you face, like coping with NDIS, returning to work, what’s the process in learning to drive again. So if you’ve got a good team of people behind you, speech pathologists, psychologists and neurologists. And also really important is to get someone who is going to help you with your mental health. Because Emma’s mental health was definitely affected, and my husband and I felt at a loss to cope with that.

Kim: But once we got those people behind us and we reached out and we found support groups and an aphasia group, where she could feel comfortable with people like herself, it made such a difference to us. Also being friends with people in an aphasia group is also good for the carer too, because you can talk to them and you understand the issues and the problems that they’re having, and they can give you some advice and it’s something you need, you can’t just do it alone.

Simone: So really highlighting that importance of support, in pretty much every area that the stroke has affected. Yeah. Such a lot to navigate too. And so just wanted to talk about how you live a good life after Emma’s stroke. Obviously travel was something that was important to you before Emma’s stroke, and now Emma’s living with you, how do you continue to live a good life?

Kim: It took a little while, until we felt comfortable to leave her. She’s very determined. We’ve had a couple of trips overseas and left her with good care and she can manage to look after herself independently. She’s living with us in a semi independent apartment. We’ve just recently moved to a bigger house and she has her own wing, and it’s good. We’re there if she needs us, but if she doesn’t need us, she can shut herself away. She has also made some great gains and that has helped us. We all went on a holiday together last December overseas, which was something that she was very proud of because she felt that her traveling days were over. So we managed to make her realise that you can do it. And she is so determined that her determination inspires us as well.

Simone: Fantastic. And so creating new memories together, new family travels.

Kim: Yeah. Yes. You don’t need to limit yourself with what you can do. As a stroke survivor, accepting your new normal and setting challenges for yourself is the best. Emma, for her NDIS, she had to list some goals. And every year she has to revise those goals and they’ve been inspiring for her. The first goal was learning to drive. The second goal was going back to some sort of work. Third goal was living independently. I’m not sure what next year’s goal might be, but every year, having that goal, gives you something to strive for and to make sure that you don’t limit yourself in what you can do. And that’s been inspiring watching Emma. Another goal that she also had was to advocate for aphasia and spread the word. And she’s tried to do that in as many ways as possible.

Simone: And has that inspired you as well, to be more involved and an advocate for aphasia as well?

Kim: It has. I said to her, if you want to do it, we’ll support you. And I’ve become involved with the Australian Aphasia Association. I’m secretary of the Australian Aphasia Association now, and it’s inspiring to me to be involved with so many people. It’s lovely to hear other people’s stories and other people’s goals that they have. And yeah, we’re working towards pushing for more awareness of aphasia.

Simone: And that sounds like that’s really part of you living a good life, as well as, using this journey as well, and inspiration that you gained from Emma to also, I guess, inspire you in different ways from the sound of it.

Kim: Yes. We came to the conclusion that there had to be some silver linings from this bad episode in our lives. And I think we’ve found them now, where we’ve searched for them and we’re at a happier place now.

Simone: Yeah. So good to hear Kim. I thought we might wrap it up by you sharing your top tips for a parent of a young stroke survivor and what they might be.

Kim: First thing is to look after yourself. Keep yourself healthy, mentally and physically. It’s going to be a difficult ride and you need your strengths to support your loved one. And the second thing would be to accept the situation. As soon as you can accept it, you can move ahead. Accept the situation, seek help if you need it, but don’t dwell on the bad things. And the third thing I would suggest would be to reach out to support groups. The Stroke Foundation, and the enableme website and the StrokeLine are there and utilise those resources. For anyone who’s got aphasia, the Australian Aphasia Association has a website, you can become a member or you can just get on their website and find out some local community groups that may be in your area. It really makes a difference. If you can get those supports behind you and just to share your story, it really helps.

Kim: If you can share your story and get mutual support, I think that’s probably the main things. You don’t have to do it alone, and you aren’t alone. Unfortunately, I believed before Emma’s stroke, that stroke would not happen to a young person. Unfortunately, my ideas and knowledge about that has changed since 2016. And we need to do more about trying to prevent it.

Simone: Fantastic place to finish todays podcast Kim. Thank you so much for sharing your story and also sharing your wisdom and tips that you’ve learned along the way. If you found this episode helpful, please share the episode 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 again so much, Kim.

Kim: Thank you Simone.

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 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 National Disability Insurance Agency.