My dad’s schizophrenia started just before my wedding – he ended up sectioned and didn’t make it
I grew up in Tavistock, Devon. My mum and dad amicably split up when I was a baby. He was 31 when I was born. I saw him regularly, as he only lived 15 minutes away and I stayed with him as I got older.
Dad was diagnosed with schizophrenia in his twenties and has been in and out of hospital all my life. He’s never really been able to work – the longest job he ever had was at a lawnmower repair place in his early twenties before he was diagnosed. Mum was always been really open with me about dad’s mental health. She’d take me to visit him in hospital when he was sectioned; we’d sometimes have to travel to Wales from our home in Devon. Mum’s still there for him as a friend and will always go and visit him when he’s not well.
We think what originally triggered dad was the tragic death of his older brother, in a coach crash in the former Yugoslavia. They were very close, dad being the youngest of three children. That combined with his partying and the drink and drugs that came with it, set his mind off.
I’ve got really mixed memories of dad growing up. I’ve got nice memories pottering about in the garden together or visiting my lovely nan, Dad’s mum, nearby. We loved going out walking on Dartmoor and seeing the ponies. But the memories that aren’t so good are from when he was more vulnerable and got caught up in the wrong crowd. Nan tried to be really understanding of his problems and mental health, but she felt helpless.
His triggers were often, but not exclusively, drink and drugs. That would lead him to spiral and not take his meds. But sometimes, there was no obvious trigger; it was just his schizophrenia tapping away inside his head that would convince him that his meds were dangerous or poison, and as soon as that seed gains momentum, he goes off the wagon and has an episode. Dad has something called TRS, which is treatment resistant schizophrenia, which means the usual pills don’t work. Consequently, he’s on a really high dosage of the anti-psychotic drug Clozapine, which balances the levels of dopamine and serotonin in the brain, substances that help regulate moods. He has to have blood tests every week because Clozapine attacks your white blood cells, which form your immune system. It’s the only drug that works for dad, but when I say it works, it’s just better than nothing. If he goes off his meds for even three days, he has to start from the lowest dosage again to get it back into his system gradually. His long-term usage of it has caused kidney failure.
Growing up, he had periods where he was good for months on end, so I’d be able to do more with him, like going to the cinema, cooking together, doing more gardening, just generally hanging out more. There was a period when I was in my early teens, where he had about six years without going into a psychiatric hospital. He still had his moments, but they weren’t severe enough to land him in hospital. This long spell coincided with him not smoking cannabis. Some people can smoke it and just be a chill, fun person, but it’s terrible for someone with mental health issues like dad. He may love it, but it bloody ruins him.
I started taking a more active role in caring for dad in my teens. I didn’t really think much of it at the time. My mum and stepdad were always there to help me if I needed it or asked them for help with a situation and then as the years went on, I just dealt with it myself, including dealing with mental health services. Advocating for him is hard because when he’s not very well, he doesn’t see the point in getting help. But he really trusts me and deep down, will realise that I’m right. I have to be really forthright when he’s in hospital because I know his medical history inside out and sometimes the doctors will be pushing for a certain treatment pathway that I know isn’t right for him.
You can tell when dad is getting ill because he starts talking about the past and overthinking about it, including the horrible people involved in it. He’s paranoid about them coming back. I try to reassure him by saying, “They won’t give you a second thought now, they’re nothing to do with you any more,” and he’ll be insistent that they are. I think his mind is working at a million miles an hour, making connections everywhere between past and present, and in his mind, it makes complete sense to him. He hates his life, so he doesn’t live in the present as much. He feels like he’s missed out on so much and hasn’t lived the life he wishes he’d had.
The mental health system in the UK is completely broken and it’s getting worse. My dad used to have mental health care workers, who’d go and visit him regularly. They’d organise him to go to volunteer groups involving wildlife and conservation, or to the local mental health café. It gave him a sense of purpose and he loved to stay active. It also kept his episodes at bay. If he ever had an episode coming – and I could tell when it was – I’d ring them, and they would come and help him and de-escalate it. But over the years, this monitoring has fallen by the wayside. Now, they say unless he’s a threat to his own life or someone else’s, they can’t come out, or they say to call the police – who don’t know how to deal with it. In recent years, he’s been so physically unwell, he just can’t do anything, and then the more mentally unwell he gets. It’s a vicious cycle. This vicious cycle means more bad press for people being violent and mentally ill, when actually it could have been prevented.
My dad’s illness has shaped his life, from where he lives, to his relationships and how he spends his time. My dad is genuinely the most kind and loving person, he has a real heart of gold, but when he is unwell and having a psychotic episode, he can behave in ways that don’t reflect this – you have to be able to see past it. He’s never intentionally directed his outbursts at me, but there have been times in hospital, where I’ve had to restrain him and pin him down, while he fights and tries to get away. I’d rather restrain him than the police or security. In his head, he’s like a dog backed into a corner and he’s fighting for his life. He’s petrified, crying his eyes out, in a frenzy, and it’s really sad for me to see because it’s just not him. The worst time was when he was taken to Plymouth A&E because there was no room anywhere else, and they locked him in a room with just a chair and security outside the door. He spent the whole night like that until I could get to him.
Dad is just naturally a thoughtful person, even when he’s feeling grumpy and depressed about his situation. He likes to hand make little gifts for me or buy wee things to show that he’s thinking of me. Even though he’s only met my mother in law once, he buys her birthday cards and writes to her. Just when he’s ill, his innate nature gets dominated by his paranoia and worries.
Dealing with dad’s behaviour from a young age has made me stronger and accepting of people from all walks of life – whether it’s someone homeless who seems “crazy” or just different people, I can see similarities with him. They’re just scared and vulnerable and have maybe struggled with substances or suffered abuse and tragedies.
I started my garden design business in Bath in 2019, but I was commuting to Exeter twice a week to see dad when he was sectioned and told me he was dying. The travel was getting exhausting, and I was newly married. My wife and I knew we wanted to move back to Devon at some point, so now we’ve got a rented house 20 minutes away from dad’s council-run residential home. He’d been in a psychiatric hospital and even with a home care package in place, it wouldn’t have been enough for his current needs. Not many places cater for people who are both mentally ill and physically very unwell, so he had to stay three months longer than necessary in the psychiatric ward before a bed became available at this home and the funding was released. It’s a good place in the countryside, but he hates it because he doesn’t have any freedom and there’s nowhere for him to go.
Stress and big social events are also triggers for him or knowing that something was on the horizon. Sadly, my wedding 18 months ago was the start of his demise, and he ended up sectioned for a year and didn’t make it. He was worried about doing a speech, even though we weren’t expecting him to. He just played out so many scenarios in his mind, none of which ended well for him, like he would be judged by all the people he didn’t know. He’s always overestimated the risk of something happening, rather than focussing on the unlikelihood of it.
Dad loves gardening and drawing because it helps take himself out of his mind. Just being outside, surrounded by green space, or going for a walk is so beneficial for mental health.
When dad and I hang out, we don’t necessarily talk about him having schizophrenia, it’s more about how he’s feeling. He gets that he has it and he’s conscious of his head being too full of noise and him hearing things, but when he’s ill he doesn’t see it. He just tells me there’s too much going on and people are doing things.
I’ve found that people often have a genuine lack of understanding around schizophrenia. There’s a misconception that people think it means you have multiple personalities. It’s very different for a lot of people. Many can hold down jobs and don’t have an episode for years, partly because their medication manages it. They are more in control of it and are conscious of when they’re becoming more paranoid or delusional. People who have schizophrenia aren’t necessarily actively aggressive and dangerous, it’s because they’re scared and they’re at more danger from other people because they’re vulnerable. There are a lot more people causing harm and being aggressive who don’t have it.
Part of the problem relating to mental health stigma is people don’t seek help because they’re worried about being judged at work by their boss or colleagues, or their partner and family. It’s exacerbated in men because they hate admitting any illness, let alone mental health.
The healthcare system needs to sort its act out in how mental health problems are dealt with and treated.
The new Let’s Think campaign from the charity Rethink is encouraging people to reconsider their preconceptions and to raise awareness of the stigma and discrimination faced by those severely affected by mental illness. They can also help you navigate the DWP minefield regarding benefits and treatment options. I have power of attorney over dad now and it still took me a year to organise his benefits.
If we can encourage people to feel more comfortable opening up and discussing their condition, then that’s a first step. I don’t want people to feel ashamed.
As told to Sarah Ewing
To find out more about the Rethink campaign and their work, go to www.rethink.org
