Elise was 12 when her father had his stroke. Looking back as an adult she reflects on the wider impact of his stroke on her own and her family’s life.
Can you tell us what happened when your father had his stroke?
It was all very sudden and happened over night. I was next to my dad when he had his stroke, and I remember being very confused and frightened as to what was wrong with him. By the time he was stable in hospital, my siblings and I were allowed to go and see him; but it was unfortunately too late for anything to be done. It was really hard to understand the gravity of what had happened, and I think we were all very unaware as to what it meant for Dad and us. He lost his ability to speak or understand what we were saying, had difficulties swallowing, and his physical mobility was affected. The worst part about it was that he was a young, healthy individual. Doctors reckoned there might have been a weakness in one of his arteries, but it wasn’t confirmed.
Thinking back, he showed no signs of stroke - the paramedics didn’t recognise it, and they also got lost on the way to the hospital. The doctors also weren’t able to recognise it, and therefore weren’t able to give him the injection to prevent any further damage because he didn’t show the typical symptoms of stroke. At the time, the hospital tried to discharge Dad roughly two weeks after his stroke, which was very stressful; he couldn’t even walk let alone get up out of a seat nor bed. However, with perseverance for more recovery from my Mum, they kept him in to make sure he could get regular physio and speech therapy. This meant he was in hospital for around four months or so.
What was his recovery like?
We went to hospital every day after school – my Mum twice a day, each day for those four months. When Dad was ready to come home, the first few months were very hard. He suffered from depression, so it took him a long time to come to terms with what had happened. On special occasions, he used to get really upset which made it hard for us to watch. He used to love reading, listening to music, playing guitar – and now he wasn’t able to do any of those things anymore. He was so depressed he kept saying he wanted to die – it was incredibly upsetting for all of us. It was particularly hard on me; I was incredibly close with him, and blamed myself for what had happened to him, seeing as I was the only one with him when it happened. I had to become an emotional and physical support system for him, and when I was a lot younger, had a lot of hope that he would go back to normal. It hit really hard when I realised that this was not ever going to happen.
Despite this, he is one of the most determined, strongest people I know, he never gave up trying to improve things for himself. He can say a few words here or there and struggles a lot walking as his leg can get very stiff and there is no movement in his right arm.
Communication is really hard, but we are patient with him, and we take cues where we can to help us understand what he is trying to say.
How old were you at the time and how did it affect you and your wider family?
I was 12 years old. For me, I struggled to come to terms with the reality of the situation, and how limited resources at the time meant none of us really had any sort of support. I had to take on a lot of responsibility from when Dad was allowed to come home, which included picking up his medication, cooking meals, cleaning, being around to look after my now not-so-little sister, and being around to help Dad if there was ever an emergency. There were times where I needed to be an emotional support for him, which I found very hard. My siblings and Mum all coped differently to me, so I can’t say how it affected them.
What long term impact do you think your father’s stroke has had on both you and your family?
The hardest part of the situation was knowing he wasn’t going to get better. I think now, Dad has come to terms with what has happened to him. He has settled in a routine that he is happy with, and he is as comfortable as he can be. He still has his witty sense of humour, even if he can’t express it too well, and humour is the best thing. He enjoys his swimming, loves watching football and enjoys the little independence that he has been able to gain. He also enjoys going on a seated peddle bike, so keeping active is a big thing for him. Even after the stroke, he could still play chess – tending to beat me in four moves or less usually.
What kind of support would have been helpful to you in both the short term and the long term?
At the time, I didn’t know what stroke was – I didn’t know what the symptoms were, what the stroke did to my dad, and what it meant for us as a family. It would have helped a lot to have support that could have talked about what stroke truly means, that it was no one’s fault and what it would mean moving forward. It would have helped to have that hard discussion, to say that while recovery is something that is unique to everyone, that it won’t be the same as it once was. For the long term, to know that there was someone to talk to would have been great.
I am at a stage in my life now that my dad is somewhat comfortable, has his own routine and that’s all I could have really hoped for him. One of the biggest things though, is being offered different varieties of support. My dad for example struggles to speak and understand, so offering speech groups with people is not enjoyable nor helpful for him.
Other active things on the other hand work really well, like swimming – so it’s not a one size fits all. Other things that would help him are things to help him deal with pain – whether that’s back pain, digestive distress etc., having different therapies for that would be beneficial in making him as comfortable as he can be.
One of the more serious takeaways from this, is that parents should consider taking power of attorney (both medically and financially) just in case something like this happens. The type my parents had meant that my Dad needed to sign it; something he wasn’t medically fit to sign at the time. Having a power of attorney in place helps make financial and medical decisions easier.
Secondly, social services were very unsupportive. If you have a care plan done with social services, don’t just agree to anything. Always take someone that can support you or you bring whatever support you need that can give you the best advice whenever it comes to any sort of decision-making process. Mum had to make hard decisions in challenging situations, which you wouldn’t expect when something like that happens – so the support she had helped a lot.
What would you like people to know about supporting the children of someone after a stroke?
I personally don’t think there is any point sugar-coating this kind of situation. Being told what the worst-case scenario could be is far better than being left in limbo. The best thing to do is provide support early on and allow a platform to express how children are feeling – it would provide an outlet to deal with their emotions about the situation in a safe place that can help them cope. Although, on the other side of things, the way it impacts each child is different – if the children are prepared to have counselling early on, I think it should be encouraged. Nonetheless, forcing it on children when they’re not ready can have the opposite effect, so it’s important to go by the need at the time and when they’re ready. All of my siblings reacted and behaved differently in the situation, so it’s important to recognise that and support where you can.