Ray Churchill has cared for his schizophrenic wife for more than 20 years and is passing his experience on to others. He told Dan Parton his story.

In this article:

  • Ray’s story
  • Family first
  • Continuing care
  • More illness
  • One day at a time
  • Giving something back

Ray’s story

It was a scenario Ray Churchill had long feared but hoped would never happen. When he returned home one afternoon in the mid-1990s, he found his wife, Rita, in bed with blood pouring from her wrists. She had slashed herself with a kitchen knife.

Rita had suffered from schizophrenia for 10 years and, having had a major relapse some time earlier, feared she would never get well again. She saw only one solution: to end it all.

Fortunately, Ray found her just in time and phoned for an ambulance, which saved her life – but Ray admits it was a close call.

As a result of her suicide bid, Rita was sectioned and spent the next 6 months in hospital before she was judged well enough to return home.

For Ray, this was the low point of his wife’s illness and came after a decade where her mental health had fluctuated between leading a relatively normal life to catastrophic breakdowns.

Rita’s problems had first developed in 1984 when she was 28 years old. Initially, she was just tired and depressed, but after about 6 months she started hearing voices. She believed she could hear the neighbours talking about her behind her back.

“I didn’t know about schizophrenia at the time, I thought she was genuinely hearing voices, hearing people running her down,” Ray says. “I went and argued with the neighbours for what turned out to be no reason at all.”

After this, it quickly became evident that Rita was very ill; she continued to hear voices and became extremely confused and suicidal. When Ray called a doctor, the GP confirmed it was schizophrenia and that Rita needed urgent hospital treatment.

Family first

For Ray, Rita’s illness was life changing. Not only did he now have to look after his wife but also take over caring for the couple’s three young children. It was a role he took on without hesitation: “I know it sounds difficult but if you have a family and care about your wife, no matter what happens your family comes first.”

But schizophrenia is a condition that is episodic and after her initial breakdown Rita recovered so much that she and Ray decided to have another child. In 1987, she gave birth to Mark.

Nevertheless, soon after Mark’s birth Rita developed post-natal depression and became ill once again.

At this time, Ray decided that he could no longer continue working as a builder and became a full-time carer.

Following this decision, Ray admits life became tough. Not only did his decision have serious financial implications for the family – at the time there was little help from the state in the form of benefits – he was also looking after a baby, three children and his wife.

“It was like a 1-parent family because she was so ill,” he says. “It took a hell of a lot of hard work looking after her and the kids and I had virtually no time for myself. It was lucky that I was younger – I was in my early 30s then – I don’t know how I would cope with that situation now. I go cold thinking about it.”

Continuing care

Soon Ray had to supervise Rita 24 hours a day. “At times I was as much a prisoner of her illness as she was,” he recalls. “I would either have to take her everywhere with me or I couldn’t go out because I couldn’t leave her on her own. I didn’t know what she would do – whether she would wind up killing herself, running off or anything like that.”

Even when a friend came round to sit with Rita while Ray popped out, the worry continued: “Can you imagine tearing round the Post Office, standing there sweating that nothing was going to happen at home? That’s how your mind works; you have that pressure all the time.”

But when Ray took Rita with him, it just posed different problems: “I had huge problems taking her out; people weren’t comfortable with her in the street. I remember going on a bus and my wife was acting a bit on the bizarre side and a guy behind me turned round and said: ‘you shouldn’t have brought her out in that state’.

“I turned round and had a go at him because I felt she had a right to be out. We nearly had a fight on the bus.”

Nevertheless, Ray found he was able to cope and has no regrets about taking on the role of carer; he believes it was the right decision for Rita and his children – none of them wanted to see their mum admitted to hospital. “If you care about someone and love someone that much, what is the alternative?” he asks. “Is it that she spends most of the rest of her life in a mental hospital or should she be where she should be – at home?

“I am a great believer that people do not get the quality of life in hospital that they do at home."

“The only issue is that when you’re looking after someone with mental health problems, the pressure on the family is great. With the disruption mental health brings to people’s lives, some believe the best alternative is to have them put into hospital, but I couldn’t relate to that.”

More illness

Ray stuck by this philosophy when in 2003 his youngest son, Mark, then aged 15, developed schizophrenia as well.

Mark became ill after he was relentlessly bullied at school. He was picked on partly because of his mother’s mental health problems and began hearing voices and started to self harm.

His condition was not as severe as his mother’s and fortunately Ray was able to take Mark out of his school and into a place at the College of North East London, where he received specialist help and his condition improved.

While Mark still has problems, he is nonetheless achieving academically; he is currently completing a course in computer game design at a local college and is considering a university place.

One day at a time

Meanwhile, Rita is also faring well. She has not had a major relapse since 2000 and while Ray admits his wife still has occasional bad days, she is generally in good health and able to help with the housework and cooking.

But Ray remains a full-time carer for his wife and son, knowing that a relapse for either of them could be triggered at any time.

This knowledge informs his prosaic outlook on life: “Living day-to-day has been part of the past [nearly 30] years of my life. You’re not going to plan much; you’re not going to look into the future for things that perhaps you’re not going to have. That way, you’re not going to torment yourself with them.

“The positive side is trying to keep the wife well and trying to keep her at home and the same with my son."

“We live a very simplistic life. We don’t worry about holidays, we don’t worry about things like cars or making our fortune, that isn’t in our heads anymore. We worry about existing and keeping as well as we can do. I don’t worry about whether I’m going to be a millionaire or if when I retire I’ll have a country cottage.  Those dreams have gone and they are no longer part of how I think.”

Giving something back

Having been a carer for nigh on 30 years, Ray has a wealth of experience of schizophrenia and caring for people with the condition, which he is keen to pass on to others. He is now chairman of the Mental Health Carers Support Association (MHCSA), a Haringey-based support group for carers that offers respite care, an advocacy service and counselling.

“I feel by getting involved it takes some of the negativity out of the illness and helps me to understand it and to help other people – I feel I have a lot of experience of mental health problems,” he says. “I feel for other people and what they’re going through, because they are probably going through something similar to me.”

As well as helping people cope with caring, the MHCSA also fights for carers and services users’ rights. “Most people who come to us to use the advocacy service have problems trying to get services within the borough or trying to get benefits for the person they are looking after,” Ray says. “They find it hard to access services, or around housing. We try to solve these problems and often do.”

Ray also campaigns on local mental health issues, such as fighting the closure of wards in the local psychiatric hospital, and for more and better services for service users and carers in Haringey, North London.