Living in the dark
‘I grew up as one of five children with a mother who had schizophrenia. Mum was in and out of hospital when I was very young and we didn’t understand why. We were passed around a lot between various relatives, but while we knew something was not quite right – no-one told us that Mum had schizophrenia.
When I was nine my Mum became very unwell and my parents separated. We lived with Dad for a while until Mum improved somewhat, then we went to live with her. It was a difficult time as it was the first time we’d really seen her hallucinating. We still didn’t know what was wrong and it was terrifying. I remember one time in particular when she experienced a psychotic episode and locked us in the kitchen. My older brother was off at boarding school, my sister was eleven and I was nine, and we had no idea what to do. Looking back, it would have been good to have a plan for what to do when Mum became unwell. Eventually the police came and we watched as Mum was taken away in a van, which was incredibly traumatic. Dad came and told us for the first time that Mum had schizophrenia, however he didn’t tell us much – just that she had this illness.
On reflection, if only I had had some education about mental illness and been able to understand more about Mum’s illness, things would not have been so traumatic for me. Not knowing anything much about what schizophrenia was, I associated it with depictions of mental illness in movies I had seen, such as ‘Psycho’. I didn’t want to associate those images from popular culture with my Mum, and so began a long period of denial that she was experiencing mental illness.’
The hospital years
‘After this Mum was in and out of hospital for a couple of years and we lived with Dad. As an adult I can see he did the best he could on his own with five children, especially with Mum making things difficult for us. Caught up in her paranoia she would frequently ring Child Protection Services to make a report about Dad. Child protection staff would then come to visit and check on us and our living situation, and we lived in constant fear of being taken away. It made us very cautious about not sharing information with social services.
During this time we saw Mum once a fortnight and would sometimes visit her in hospital. I found the hospital environment distressing. While it was good to see Mum, it was confronting for a child to see other people who were visibly unwell and I’m not sure that it was a good thing for us to visit her. When deciding whether children should visit their parent at a psychiatric hospital I feel strongly that the decision must be based on what is best for the child.’
The scarcity of support
‘During my teens we moved back to live with my Mum, who was not as unwell as she had been, but was not ‘well’ either. My older brother was showing symptoms of what would eventually be diagnosed as schizophrenia and I experienced abuse from him. Although I was the middle child, neither my older brother nor my older sister were coping well with our situation, so I felt a lot of responsibility for all of my siblings. Mum tried to set us against dad, telling us he was ‘the devil’ and as children we didn’t know who to believe. I felt a huge obligation and loyalty to Mum and wanted to protect her.
We didn’t have much support from other relatives. I think many of them had been burnt by previous experiences of trying to help. Dad picked us up every second weekend and took us out to spend some time with us. He had remarried and sadly his second wife wanted nothing to do with us. Occasionally we would get some support from church but it seemed that most people didn’t know what to do for us, or how to help.
I ask myself, where were the services who could have supported us? The answer is that 30 years ago the services were not as good as they hopefully are now. We did have a social worker assigned to our family, but we never talked to him because Mum’s paranoia had made us so suspicious of services and protective of each other as siblings.
School could have been a source of support – there were many signs that something wasn’t right. I was a very withdrawn child, there was no money for camps or excursions, my lunch was often inadequate and I spent a lot of time in sick bay feeling unwell. I knew something was wrong with my family, but I didn’t want anyone else to know and my determination about keeping our family situation private meant we got little support from our school.
From my perspective, the most important thing you can do to help is to lend a listening ear, to be there as a support, even if you don’t know what to do. This can make someone feel like they are not alone and that, despite their circumstances, they are accepted.’
Acknowledging a child’s insight
‘The most difficult and frustrating part of being a teenager with a parent who experienced mental illness was that although I had a large role in taking care of my Mum, usually no-one listened to me.
I remember when I was 15 and Mum became unwell. I could see the early warning signs as she began to show symptoms of panic and anxiety, and I was doing everything I could to avoid her getting worse. I rang Mum’s doctor to tell him she needed help but he told me: ‘You’ll have to get your mum to ring’. Mum had no insight into her level of illness so wouldn’t ring. I tried our GP, my aunts and uncles, neighbours, the local health centre, but they all needed Mum to ask for help, which she wouldn’t. Often it took a suicide attempt or threats from Mum to harm us before anyone would help.
When Mum did get admitted to hospital, as a teenager I found that challenging too. Accompanying her as she was admitted to a secluded ward, and seeing and hearing other patient’s behaviours and language was confronting for me. Sometimes the doctors would talk to me about her medications and treatments and ask for my input, and while this was better than being ignored it was also a huge responsibility for a 15-year-old.’
Learning from the past
‘My older sister was 26 when she was diagnosed with schizophrenia too. We are very close and the news was crushing. I felt a great sense of grief and loss as I imagined all our plans and hopes for the future changing. Thankfully my sister’s experience has been more positive than my mother’s. Having known the negative impact of a mother who wouldn’t acknowledge her illness or adhere to long-term treatment, my sister has been proactive in managing her illness and taking medication. With the support of her husband and four children she has learned to cope well with her schizophrenia.
For many years I had wanted to believe that Mum was just misunderstood, but with two siblings diagnosed with schizophrenia I realised I needed to confront the reality of my family history, and research my own risk of mental illness and any potential risk to my children. I have spent six years now working through things from my childhood with a psychologist and found it very valuable. Working as an adult in the mental health field has also acted as a form of recovery for me. As a child I felt like I was an alien, with such a different life from my peers. But doing the work I do has shown me that other people have similar experiences of growing up with a parent with mental illness and this has helped me feel less alone in my situation. Having been through such difficult experiences I feel I have overcome a lot and gained great strength and compassion.’
Mum’s later years
‘I was the main carer for my Mum for her entire life and even as an adult I found it hard to get help for her. In my early twenties it became clear that she was a danger to live with and I assisted her to move into a housing commission unit with Meals on Wheels and a case manager who supported her involvement in day programs. I felt enormous guilt and responsibility but I needed the separation and so did my mother. With the support of my husband I realised that Mum functioned better and more independently when living apart from me. As is often the case for people with severe and enduring mental illness, her schizophrenia led to gradually worsening physical health. Eventually she entered a nursing home where the facility and accommodation were not well equipped to deal with her psychiatric problems. She passed away last year.’
A lifelong impact
‘I can see that the effects of having a parent with a mental illness have been (and will be) with me throughout my life. I am married with four children, and as I go through various life stages with my own children I have flashbacks to what life was like with my Mum when I was their age. I have grieved for milestones that never took place, such as having my mother at my wedding, or having a caring grandmother for my children. Talking with my psychologist about this has helped me to maintain a balanced perception of past events and to recognise my own triggers and vulnerabilities. Also having a strong Christian faith and being involved in my church community has aided my recovery.
I tried to involve Mum with my children, but it was a challenge and they never had a close relationship with their grandma. I recognise that it is very important for my children to know about their family history of schizophrenia, and to understand my mother’s illness, so I have talked with them and tried to give them a positive view of the it. They can also see how my sister has done a remarkable job with her children through her acceptance and management of her illness.’
Where I am now
‘I have been involved with the Children and Mentally Ill Parents (CHAMPS) program and enjoyed giving talks about my experience. It is wonderful to see the children who take part in the program realise they are not alone. I have also been involved with other mental health programs and services and I am currently working as a carer peer-support worker for carers of people with a mental illness. I am passionate about helping people learn that you can go through a really hard time in your life, but with the right support you will get through it. I believe it is vital that clinical treatment teams listen to children as they are the ones living with their parent and have incredibly valuable insight into the parent’s illness and what would help their situation.
My background has made me very conscious of the difference that practical support can make for a family, as it would have done for me. Having worked myself as a school chaplain I know how difficult it is to support a family if the parent is reluctant to acknowledge mental illness or accept any support. Being linked with services and having plans in place for what to do and who to contact when Mum became unwell would have been a great help to our family.’