Trish: Well, when Rita had a stroke, it happened at the gym. She was a very fit, 46 year old teacher, a vibrant young lady. 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. Okay. But very lucky to survive. I was in shock. I was traumatised, too.
I was in shock. I was trying to process what happened. And I think I probably would have benefited with some counseling. Anything that would help. Didn't have to be a psychologist, but maybe someone who could perhaps give me a call and say, “How are you going? How are you traveling?” I was always there for her, you know, I call her every day to this day. If she has a medical appointment I'm there.
So I'm quite a big part of her life. I get very, very sad because I miss Rita. The person she was. A lot. It affects me, even talking about it. It's very painful, but it's okay because I have a new Rita now. I have a new Rita. And all we can do is go forward. And I guess I say to her “Don't look back.”
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.
I'm so grateful for the NDIS. I know the NDIS can be very difficult to navigate, but I am so grateful for the NDIS because she has full time care and it gives her that independence. She has physio, she has neuropsychologist, she has music therapy. Music therapy has been fantastic because she can't talk, but she can sing. She can belt out a song and she loves, she loves music.
Music therapy has been the best thing for her. It really has. Even for her moods. So I would highly recommend family members to initiate music therapy because it's helped my sister immensely. But for me it is very difficult and very tiring when the carers can't go in. I have to, I have to step in. I didn't know what anxiety was before, but I do know what anxiety is now.
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.
Trish: And we do ask ourselves “Why?” You know. “Why this?” And I ask myself as being her sister. I do say to myself “Why? Why was so much taken away?” And there's no answers to these questions. But I think at some level we're allowed to ask them. Because that's part of us processing what's happened.
She speaks a little bit. She can say a word or two. She can write things down. When I speak to her I always give her that eye contact and speak slowly, clearly, and she understands everything. I learned that because in the beginning I contacted the Aphasia Foundation a lot. I contacted the Stroke Foundation a lot. You know, I was doing a lot of research on the Internet. And there's a lot of information out there and a lot of help.
The Stroke Foundation, they were fantastic. Just research and ask questions and contact people and that's how I learnt. But it's even today, it is a hard journey. It's tough.
Saran: So what advice would you give to other family members or close friends to stroke survivors?
Trish: I would say to them to be patient. I would say to them to be persistent.
And I would say to look, you know, to look after yourself. And when you can't take it anymore, step back. But never lose touch. Always be there. It's their life. It's their choices. You can offer. You can advise. But at the end of the day, it's her choice.
I found this saying. It says “It is not your responsibility to heal others, but it is your responsibility to heal the parts of you that resonate with their brokenness.”
And that gives me courage.
Trish: It doesn't take my feelings of sadness away or depression or frustration or … but it gives me courage to say, okay, I can keep doing this. But I just thought, you've got to have hope. I don't care if it's a very, very fine line. You've got to have hope. You just can't give up.
And I have a very dear friend that's my sounding board. And I talk to her all the time. Very important to get things off your chest. To have someone to talk to. Family members need to look after themselves. You know, you need to look after yourself and take care of yourself. And if that means sometimes going away on a holiday or taking time out, then do it.
Because if you're not looking after yourself, there's no way you'll be able to look after them or cope with the situation.
I was the type of person everything had to happen “Bang”. But I've learned to be patient and with my patience, it's taught me so much. It's taught me to listen. It's taught me to wait. So it has taught me a lot.
And I am a lot more patient today. And I was very angry in the beginning. And I think stroke when stroke happens, it affects everyone. It affects the whole family because of the change. Every person's who had a stroke, no matter how mild or severe, we don't take away anything from it. Because it's all trauma. But I'm happy because today there's a lot of help out there.
There are a lot of resources that you can tap into. And that's, that's fantastic because knowledge is power.