A Mother’s Story
Caring for a relative with severe mental illness
by Angus Cadwallader
Note: Some of the names in this article have been changed to protect the individual’s identity.
What does it mean to dedicate your life to caring for someone else? For many of us, the prospect of spending every day supporting another person is an unfamiliar one, especially for those of us who are young and don’t have children. It may only be later in our lives when our parents become old and unwell, that we begin to understand what it takes to care for someone who can’t look after themselves: to organise their support and housing and make sure they’re treated well. Even those with children will typically only have to spend a fraction of their life supporting their offspring before they grow up and can look after themselves.
But for parents who have a child with an enduring mental illness such as schizophrenia, psychosis or chronic depression, the care doesn’t end when their child reaches adulthood. Many will continue to dedicate every day of their life to making sure their son or daughter is supported both emotionally and financially, and some will sacrifice their career, their relationships and their physical and mental health in the process.
In recent years, cuts to social care budgets and a reduction in the number of mental health nurses mean there is an increasing reliance on family carers to support relatives with long-term health conditions. The Carers UK 2021 report estimated that there are currently 6.5 million people in the UK who provide unpaid or informal care for someone with a physical or mental disability, a number that has risen sharply as a result of the COVID-19 pandemic. The report also found that women are more likely to undertake the responsibility for caring, which often happens at the peak of their careers and whilst raising children.
Despite the vast amount of people who provide unpaid care in the UK, their experiences are rarely heard or discussed in the media. In the spirit of Mother’s Day, we spoke to two mothers who care for a child with a severe mental illness to understand more about their experiences, what support services are available to them and the services they’d like to see in the future.
Helen is a mother in her 50s who lives in Hampshire and spent her working life in social care. Her daughter, Rachel,was in her early 20s and studying for a science degree when her mental health began to deteriorate. She was eventually diagnosed with schizoaffective disorder with complex PTSD, a condition that involves a combination of schizophrenia symptoms, such as hallucinations and delusions, as well as mood disorders.
“In the years following her diagnosis, Rachel’s mental state fluctuated between depression and mania and she was frequently admitted to hospital following episodes of self-harm and attempted suicide. I had to put my life on hold and quit my job as a social worker so that I could provide full-time emotional and practical support for her.
Before Rachel became unwell, I worked in a disabled children’s team where I looked after kids who had physical and learning disabilities, so I was no stranger to dealing with mental health issues. But taking care of my daughter and dealing with her mental health crises and suicide attempts is a whole other level of care. The condition is unpredictable, merciless and relentless – just when it seems like we’re making progress, Rachel will have another crisis and we take a million steps back.
After living with us for a few years, Rachel moved into supported accommodation where she lived with four other young people who had a mixture of mental health conditions. We hoped that the placement would include skilled staff that would help Rachel to relearn a lot of the skills she’d lost during her hospital admissions. However, the quality of the support was very poor: residents were more or less left alone in their rooms and trips were only scheduled once or twice a year, so ultimately, I think sending her there did more harm than good. What’s more, after three years, the contract was closed and Rachel was given just three weeks’ notice to leave.
Rachel is now in her late 20s and lives independently in a housing association flat, although she still needs round-the-clock support from me. Since she left supported accommodation, Rachel has received no practical support from social services or the health service, so I’m left to care for her every day, sometimes all day, sometimes all night. Caring for her on my own has affected me both emotionally and physically and I now feel more like a support worker than a mother.
There are a lot of things that I think need to change about the way we care for people with mental illness in this country. For one, the NHS desperately needs to improve its crisis and suicide outreach programmes. At the moment there is a crisis team we can talk to over the phone, but they only advise us to make a cup of tea and aren’t much help in terms of planning how we’re going to get through the next few days. Ideally, we need a mental health team that visits people face to face at home or a place for people to go that isn’t a hospital. I am a firm believer in the Soteria House movement, which promotes the development of minimum–medication therapeutic environments for people experiencing psychosis or extreme states.
When it comes to supported accommodation, I think that the care offered here needs to be far more individualised and should suit the specific needs of each resident. My daughter, for example, needs help with practical things such as washing dishes and managing her monthly budget, but she would also benefit from having the autonomy to make decisions about her care plan and support team. I truly believe that allowing residents to have a say in their treatment and nurturing their hobbies and interests will lead to better outcomes.
Debbie is a mother who lives in Wiltshire. Her son, John, was just 17 when he was diagnosed with autism and psychosis in remission. He now lives with debilitating anxiety and often experiences paranoia, delusions and frightening dreams.
“After John’s initial diagnosis, he was supported for three years by the Early Intervention in Psychosis team. This is an NHS service that is provided at the onset of a mental illness, consisting of regular contact with a community psychiatric nurse (CPN), scheduled activities such as walks and trips to the cinema and a helpline which carers can use to express concerns to the mental health team. It was really a wonderful asset to us and it helped John to stay sociable and he improved during this time.
However, the service is only available for three years and John was not referred onto another team, leaving me to organise my son’s support on my own as a single parent. After the NHS support was withdrawn, John would have highs and lows and I would be on constant alert and couldn’t relax in my own home. We would go from crisis to crisis and at times he would go missing, attempt suicide or abscond from hospital. I had no support through all of this. It felt surreal and I couldn’t understand why all this was happening.
No one really understood what I was going through at this time because my son looked ‘normal’, and some family members even thought I was exaggerating the situation. I also lost friends because they didn’t want to associate with me and my son. I became isolated and lonely, and dealing with everyday situations was exasperating. The strain forced me into early retirement which has greatly reduced my pension and I now work part time but cannot do anything too stressful.
John is 23 years old now and lives in supported accommodation, but I don’t believe the care he receives there is suitable. John has autism so gets easily overwhelmed with noise and cannot maintain a long conversation. It takes a long time for John to build up trust to know he’s accepted. The carers have no idea how to communicate with John or build a rapport with him and they only call on him once a day to make sure he’s taken his meds. He is the youngest there –many are over twenty years older – and there is no room for socialising so he feels very isolated in his flat. There is no plan of care to improve his quality of life and it feels like it is all left to me.
In terms of improvements to social services, I’d like to see long-term rehabilitation programmes offered right from the onset of the illness, with mentors that build relationships and trust with their clients. Rehabilitation takes time and being constantly juggled between different mental health teams and supported houses is alienating and can often make things worse.
I also think we need more supported houses that are situated within community settings where residents can learn practical skills such cooking, growing plants, caring for animals and using computers. John has no concept of paying bills or budgeting so I often worry what will happen to him when I’m no longer here to look after him – at the moment I seem to be the only one who fights his corner.”
Both Helen and Debbie’s stories are, very sadly, typical of the experiences of thousands of families throughout the country. Recent statistics paint a grim picture of the state of unpaid care in UK, with carers being seven times more likely to be lonely than the average person and roughly 1 in 3 carers reporting their mental and physical health as being bad or very bad after caring for over 5 years (Carers UK, 2021). The pandemic also continues to have a huge impact on carers’ lives and many are worried that they will not be able to access the level of practical support they had before the pandemic.
The charity Hammersley Homes has been established to provide solutions to many of the challenges that unpaid carers and their dependents face. We believe that supported accommodation should be a home for life, where carers can be reassured that their loved one is in a long-term, secure environment that offers companionship and help with daily struggles. By relieving some of the pressure from carers’ shoulders, it is hoped that they can find the time and energy to focus on their own wellbeing for a change.