Transcript
Nichola: One of the biggest hidden challenges is definitely the relationships, because for me, I was trying to be so respectful that Beth was 19. She's living an independent life, although she shares our home. She's still living under our roof and she's a student.
She, you know, she's a bright young woman with a great mind and a great future ahead of it. It was a real deep sadness, you have, you do lose a bit of the person that they were before. Because I see Beth suffering with her fatigue. I feel sad when she is so exhausted because she's trying to keep up. The parent worry doesn't ever go away, and I don't think that's just us. You are always worrying about what the future will look like. And so we try or I try to not do that so much now and just say, we're just ... this is good. Today's good. And trying to take that day at a time.
Matthew: It's been a significant change for her. Having a husband who was supporting her, to having to support her husband. And having a husband who could help with the kids and help financially and help around the house to having a husband who needed help with everything. I was completely useless for months.
Fatigued by everything. Sleeping through everything. Had multiple medical appointments that she needed to take me to. I couldn't remember anything that was talked about in the appointments, and I needed to hold my hand for everything and help me through everything. And my two boys, them needing to have patience with me because I get frustrated really easily. I get overwhelmed really easily. You know before the stroke I was probably a very calm, caring parent who had a lot of capacity to support and help them to having very little capacity to cope with what was happening, day to day, with them and getting easily frustrated with them.
And they were and have been incredibly supportive of me. But, you know, they've had moments as well where they're like just over me being having less capacity and just wanting me to go back to normal. How I was before.
Kylie: I've got like 3 best friends that I've known since we were children. And, we've been through everything together because we're all 50 now. And, everything you could imagine. But, I sort of felt a bit. You know, I couldn't quite connect with them anymore. Because now I was different. I was part of an experience that they'd never had. So that was not the same. It wasn't just, like, your normal chit chat.
And Scott has lost a lot of his friends too who didn't ... You know, every now and then I think. Well, in a lot ways sometimes it's because people don't know what to say. So they don't do anything. And they don't say anything. And they don't engage at all. Versus, he had, you know, some people who were the most unlikely people who've been the most supportive.
Saran: I know at one stage, David said to me, I don't want to be your carer, I want to be your partner. And it's kinda like "Yeah" and it's a hard. Yeah. Like, all of my kids are my carers. The kids and partner take on that role.
Toni: When Nick went through the process and qualified for the Carer's Payment or Carer's Allowance, whichever one it is. That really hit home because it was, he was being classified as my carer.
Saran: Officially. Yeah.
Toni: And I remember writing in there that, yes, he is my carer, but we are husband and wife and I also care for him. So we care for each other, but we are still husband and wife.
