Content/trigger warning: suicide, distressing crisis.

For Carers Week, Steve explores his tumultuous journey caring for his wife who has experienced paranoid schizophrenia for 29 years. He brings awareness to the lack of recovery-focused support for acute schizophrenia, the importance of community and how his caring responsibilities deeply impacted his own mental health.

I’ve been a carer for my wife, who experiences paranoid schizophrenia, for 29 years. She’s been hospitalised and sectioned nine times in total. Her symptoms first began when pregnant with our eldest daughter. My wife would do anything to protect her illness or deny it. I want her to have the independence to recover, like her own financial freedom, but whenever we try to apply for PIP (Personal Independence Payment), she doesn’t admit just how unmanageable her schizophrenia can get. Luckily, the school I worked at let me take time off work and retire early. I had a good job and didn’t have to worry about money too much, but what about people who aren’t as privileged?

At her lowest, my wife becomes too scared to leave the house. The crisis team becomes the only support we can access. They come round for 10-15 minutes, mostly to check if she’s not a threat. Apart from a monthly depot of antipsychotic medication and a carer, who visits for two hours a week to take my wife out of the house, there is no other form of support in between each crisis point. I tried to go to a carers meeting three times, but they kept cancelling. Another carer’s organisation I tried to access only had sessions during the day or online, which didn’t suit my schedule.

I was absolutely smashed up after the last time we were in A&E. My wife was in a catatonic state. After 10 hours of waiting for a doctor and trying to look after my unwell wife, who was urinating on the floor, I was told that no-one was available to see her; that my wife was ‘not a priority’ because she had someone with her. I left her in A&E, knowing that this would class her as unattended and therefore a potential ‘threat’ to others. It broke my heart to walk away from her when she needed the most help. But after this, she was seen and sectioned within the hour.

This reminded me of another A&E trip five years ago, where I had to wait for hours in an isolated cubicle whilst my wife repeatedly told me that I needed to die. It’s happened twice now, making an already frightening experience totally horrific. I told this story to my MP and health professionals, but no one has replied beyond saying ‘sorry’.

The isolation of being a carer is the scariest thing. There’s not a strong structure of support for families so you end up being on your own. My wife’s experience of schizophrenia had a knock on effect. It got to the point where I’d be so scared to go home and see what was happening. I was brought to the brink, stuck between what to do: shall I take the kids and leave or stay? I was caught between wanting to protect my children from my wife’s behaviour but wanting to stay true to my marriage vows. I deeply contemplated my own suicide. It was only until this point where I got some support: two years of counselling, which I had to fund myself.

Even though I was the primary carer, medical plans wouldn’t be discussed with me because of patient confidentiality and privacy. It was up to my wife to inform me, but the nature of her illness meant she never did. I was kept in the dark, left to second guess. Being a carer is a double whammy: I have none of the information, but all of the responsibility.

My main support has been from my religion and the Evangelical Anglican church. The Christian community have been like family to me and I regularly go to Sunday service. When my wife first became ill in the winter, our church sent us meals and paid for our faulty front door.

In January, I went on Question Time. My question about mental health services was left unaddressed. Stuff needs to be said, not brushed off. It feels as though services only have the resources to respond to crisis situations. We need preventative care, reliable treatment that allows sufferers to grow and truly recover. The people who are ill are the ones who cannot speak up, and the people who look after them are completely worn-down; their lives turned around. I’m fed up with having to relive the horror story that has been our life. I felt I was the only person in this situation but I know there are others, too. We need one voice together. Anyone can suddenly be thrown into this world of mental illness, it is unpredictable like cancer.