"Ross was in hospital for a long time and the entire focus was on getting him well enough to come home. You always put yourself last, you put your spouse and your children first."
- Julie, carer
Tracy Ward's husband Stephen had a stroke at their home in Denman New South Wales at the age of 48.
Tracy writes "I learned very quickly to become Stephen’s advocate. I was 36 years old and a reasonably confident young woman but not incredibly so. I think in the early days I faked it a bit because I didn’t want anyone to see how scared I was about our future.
When the ICU specialist told me he didn’t think Stephen would survive and started listing all of the disabilities that Stephen would have if he did survive and that he would probably need to be put into a nursing home, I felt like he may have been asking me to withdraw treatment. Instead I remember looking at that doctor and telling him to just keep Stephen alive and let me deal with afterwards.
I look back now and recognise that I was indeed advocating for Stephen, my husband, my intelligent civil engineer who loves politics and the Manly Sea Eagles. He isn’t just any person, he is MY person and he was going to have all of my support."
In April, 2020, Kylie's husband, Scott, had a stroke. At the time he was 49 years old.
When Scott first came home from hospital, Kylie says "He couldn't get up in the middle of the night and go to the toilet by himself. We had a chair for the shower, so I would him get in and out of the shower safely. That first week I was terrified. There's no safety net anymore. There's no nurses or people to help. It was just me. And, you know, if he falls over what am I going to do? If he feels unwell, one day he had a headache and it was like do we need to go to hospital?" Kylie says at that time she felt scared and ill-qualified.
Ross was in hospital for a long time and the entire focus was on getting him well enough to come home. You always put yourself last, you put your spouse and your children first. It’s a difficult thing for carers, to find that balance. That’s been one of the benefits of the carer’s group, to talk to people who understand what you’re going through.My advice is to try to do one thing at a time, not to try to do everything at once. Though it’s hard – my mind goes in lots of different directions! For me it’s one day at a time, one thing at a time. I work out what I can do, and I get help for the things and for the times that I can’t. Finding out where to get help from can be difficult, it takes a lot of persistence.
I always ask a lot of questions of everyone I meet. Make sure you say yes to everything. If someone says “would you like a follow up appointment?” the answer is always yes. Don’t say no to anything. If it doesn’t fit in later on, or you find you don’t need that service, you can say no then.
I learnt that I’m tougher than I think. Our family is pretty tough too, and we have a great group of friends. I’m an emotional wreck sometimes, and that comes with being tired. But I’m pretty tough. Sometimes you think about all the things that you’ve lost, but then you think about all the things you’ve got. I’ve got my health, and I’ve got Ross – between us we can work through things. Being a carer is a challenge, but I wouldn’t be anywhere else
“Looking back, when my sister had her stroke, I think it would have been helpful if I had some counselling too. I think I was just I was in shock, I was traumatized. I was trying to process what happened and I think I probably would have benefited from some counselling...
I would say to them to be patient. I would say to them to be persistent. And I would say to look after yourself.
There’s a lot of help out there. There are a lot of resources you can tap into. That’s fantastic because knowledge is power.” - Trish, sister of young survivor of stroke
My sister Rita had a stroke when she was 46 years old. And our lives changed overnight. She had had a major, major stroke. I think that she was very lucky to survive, with a lot of deficits. I was in shock. I was traumatised, too. I was trying to process what happened.
I had all this anxiety I was dealing with. I had to get counseling to cope with it and that did help me and it did give me some perspective. And I look after myself and I do have to separate myself from my sister's life now. I absolutely, absolutely exhausted myself. So I had to back off completely and just do what I needed to do.
We have to be patient. And I look at the baby steps. It’s these baby steps. And I have to be patient. I'm the sort of person I want to fix everything. I want to fix everybody. I've tried so hard to able to help her, and I've put so many, you know, therapies in place and things in place. But I have come to the realisation that I cannot fix this. But I can be there.