When Lee joined Change Mental Health, it was her first paid role in 19 years – mainly due to caring commitments, which included caring for one of her sons who lives with schizophrenia. Lee is keen to share her powerful personal story to illustrate the reality of caring for someone with serious mental illness and to increase awareness of schizophrenia, which affects 1 in 100 of adults in their lifetime.

Caring for someone with schizophrenia – Lee’s story

My second eldest son became symptomatic with schizophrenia when he was 19. Up until then he had been a normal teenager – really musical and super-talented with lots of friends. One of his close friends died from cancer and that seemed to be a trigger for him becoming unwell.

He has been in and out of hospital for long periods, sometimes up to a year. I know it sounds brutal but as his carers, my husband and I felt it was actually more manageable for him to be in hospital during the Covid pandemic. We knew he was safe, looked after and cared for. It can be easier for him when he is in hospital rather than out, because he is now what they call ‘treatment-resistant’, and is allergic and resistant to many of the drugs available.

We have had to deal with many difficult situations – he has had overdoses that he’s been lucky to have come back from, suicide attempts, and he has run away from hospital. All these things take a real emotional toll on you. It sounds strange, but eventually this has become our normal. We just had to adjust to it.

After five or six years of caring for him and his condition, we knew this was how life was going to be for him and to accept that he’s not going to get better. This is the reality. It takes you a long time as a parent to accept that this is going to be a condition he lives with, that it is going to be his way of life, and then to try and put things in place that can make his life better. It is definitely not the life you envisage for your child.

Although I am a carer, I see myself as a parent and a mum first. With his other siblings still at home, one of the hardest things we had to do was decide that he needed his own accommodation. Having to make that choice was very difficult because in order for him to get his own flat he first needed to go into the homeless system – something that was particularly difficult as a parent and a carer.

It was just impossible for him to continue living with us at home – he was so symptomatic that it had become too chaotic to manage. It was impacting on my own mental health, and there were times I would be in one hospital and he would be in another hospital, and my husband was caring for us both.

He does now have his own flat but we give him a lot of support. We have to give him financial support, and also help to keep him clean, tidy and organised. When he is out of hospital, you never know if you are going to get a call from the police or phone at erratic hours and have a rant at you down the phone about his voices. He can think he is fighting between good and evil and he is going to save us all. It toughens you, but you never become used to it. It is profoundly sad and upsetting but you have to build that emotional shell so you can keep being there for him.