Sian and I have a brilliant relationship. We have our moments when we get fed up with each other, but on the whole we get along well. Her dad died when she was three, so it's just been the two of us for a long time now. We’re very close, although I know she gets frustrated sometimes because as her needs have increased she can no longer spend time with friends. Before, she could read a book or chat with her friends online, swapping photos. But then after her strokes she lost all that. Her world shrunk down to just me.
Sian was diagnosed with mitochondrial disease when she was 11. She had health problems from birth, although at first they were very mild. She always had a learning disability, but she ticked along fine for a while. When she was 16 the epilepsy started big time, but we managed to get that under control and she was still an independent young woman. She went to college and did an internship. She loved to read; books were her life.
But then on her 30th birthday she started acting a bit peculiar, and that led to all the strokes. She was in and out of our local hospital a lot, and then in September 2020 she was rushed to the specialist centre in London. That was when we got the further diagnosis of MELAS. She'd been having metabolic strokes, but unfortunately our local hospital hadn't picked that up, so she has scarring on her brain that's left her very dependent.
“People like Sian have nothing. They need more facilities to socialise, so they can be out of the house and spending time with their peers, with access to the care they need”
It's not just hospitals that need to be more aware, it's GPs too. When Sian was in hospital it was very touch and go, I was told three times to prepare myself. She couldn't eat, she couldn't speak, she couldn't walk, but then the doctors said, oh she can go home. And I was thinking, what? It's only me here to look after her!
She's had a lot of speech therapy and can communicate a bit again now. And as far as mobility goes, she can walk across the room, but it's a very risky crossing. I've got rid of half the furniture, had special flooring put down, and got rid of all my rugs except one, but she managed to find that and fall over. So even when you're relaxed, you're on alert. You're always thinking, is she acting a bit different, is that right? I think that goes for everybody in my situation; when you're looking after someone with such a complex disease, you're never switched off. I have a baby monitor for her at night, and I won't sleep until I know that she's sleeping, because I just don't know what might happen.
Sian gets a personal assistant for 16 hours a week, and I get five hours a week carer support, but the rest of the time it's just the two of us. So there's no let up, no respite. I do get pretty pissed off sometimes. There's a lot of paperwork to deal with too; you have to manage all that yourself and I find that hard.
We had some good news recently; the day centre that Sian loves, which closed during COVID-19, is reopening again for one day a week. When COVID hit there were a lot of stealth cuts across the board. Local community services got shut down; carers, mental health, local clubs and community support all folded. So Sian can't wait for the day centre to open again, even though it will just be for one day a week. I think she'll come on in leaps and bounds, because she'll be with all her pals again, socialising in a safe environment and getting all that stimulation she needs.
“You have to take what you've got and make the best of it. Sian and me, we laugh more than we get sad. But I've had my dark moments”
The cuts affected everybody, so you can't sit there saying 'poor me', but it has been tough. People like Sian have nothing. They need more facilities to socialise, so they can be out of the house and spending time with their peers, with access to the care they need. Because having a carer for a few hours a week isn't enough, it's not a life. They need to be able to go out, have fun, let off steam. And if that sort of support was available, it would take the pressure off the carers too. It's the only time when I don't worry, when she's at the day centre, because I know she's with people who are trained in epilepsy and learning difficulties. But there's only one day centre for the whole area, and of course you have to be able to pay for it.
We’re lucky because we have a warm house, a telly, the iPad, and we don't have any debt. I was always taught to make do and mend, and I'm grateful for that. It could be a hell of a lot worse. But as Sian's abilities deteriorated, our world got smaller. Going on holiday now would be impossible, because we can't afford a holiday with all the facilities she needs. It's hard turning people down when they invite you to things, but I have to check all the facilities before we agree to anything, because I've got to push her in a wheelchair. As along as it's flat, I'm fine, but get to a hill and I'm turning round and going back the other way!
“Of all the things that we have for support, The Lily Foundation is the best. I don't think we could manage without them. Thank God for The Lily Foundation”
It is what it is. We're not going to whinge about it, get sad and maudlin. You have to take what you've got and make the best of it. Sian and me, we laugh more than we get sad. But I've had my dark moments, I can tell you. And that's where The Lily Foundation comes in, because you can do a shoutout. When you're in the hospital watching your child and you don't know what's going to happen, or you're getting angry and frustrated, you can reach out on the Lily Facebook group and it's amazing the support you get back. Of all the things that we have for support, The Lily Foundation is the best. I don't think we could manage without them. Thank God for The Lily Foundation. I mean really, thank God for The Lily Foundation.
It's not always easy for carers, but you have to remember it's not about us, it's about people like Sian. What can we do to help them live a more independent life? If you want to help the carers, you have to help the people who need the care.