Heather McKenzie’s life took a dramatic turn when her son first started displaying symptoms of schizophrenia in 1998. Here is the story she told us in 2003. We also include an update of what has happened in the past four years.
When her son Andrew* was in Grade 9, Heather first noticed a change in his behaviour and thought patterns.
According to Heather, Andrew had always been an exceptionally bright child who was at the top of his class. He was a normal boy who participated in sports and had a circle of friends.
But Andrew gradually became withdrawn, lost interest in things and his school marks deteriorated. He struggled to concentrate and it became difficult to reason with him. He also showed signs of extreme rebellious behaviour.
At first she thought that his strange behaviour was a result of him using dagga and being an extremely difficult, rebellious adolescent. But she gradually became more convinced that there was something seriously wrong.
Andrew saw several doctors, psychologists and psychiatrists, but all of them thought that this was just a passing phase and that he will "grow out of it".
It took nearly three years before he was correctly diagnosed as suffering from schizophrenia.
Even though schizophrenia is a serious, chronic mental illness, finally learning the diagnosis came as a relief, says Heather. “Our doctor admitted him to Valkenberg Hospital and there he was immediately diagnosed with schizophrenia. At last we knew what we were dealing with and could start proper treatment. It is just a great pity that schizophrenia is often only diagnosed when the disorder is at an advanced stage as research has shown that early diagnosis greatly improves the treatment and prognosis.”
It is not uncommon for schizophrenia to be misdiagnosed. Because the onset is usually in late adolescence or early adulthood, it can easily be confused with normal adolescent behaviour.
Andrew, who is now 23, is very ill and needs constant care. As a result of his illness he behaves in an unpredictable, bizarre and disruptive manner. For example, Heather has had several fires in the home and has lost many belongings and pets as a result of his illness.
“Andrew would leave a burning cigarette on the carpet, or he would open doors or security gates in response to voices he hears in his head,” says Heather.
During psychotic episodes he also sometimes becomes extremely aggressive and can be very violent towards Heather.
He spends on average six months per year in hospital. Until recently, Heather, with the help of her domestic worker, had to care for him at home when he wasn’t in hospital.
Relief came a few months ago when Heather and other parents raised enough funds to start Hope House, a home for people with schizophrenia who need constant care and who are too ill to live in other psychiatric residential facilities.
Coping and acceptance
Andrew’s illness has had a tremendous impact on the rest of the family and Heather has had to make huge emotional and financial sacrifices to care for him.
By the time he was eventually diagnosed, his illness had already taken its toll on her marriage. When Andrew was in matric, Heather moved out and started a new life with Andrew and her daughter, who is two years younger.
“At first, it was difficult for me to accept his illness. As in the case with many other parents of someone with a serious mental illness, I initially felt guilty and felt that I had somehow caused the illness. But with the right help and support I’ve managed to accept his illness and have learnt to live with it,” says Heather.
The stigma attached to mental illness often makes it difficult for Andrew and his family to cope.
One of the first steps Heather took was to learn as much as possible about the illness and its treatment.
According to Heather, the greatest cause of stigma is ignorance. One of the most misused psychiatric terms is the word "schizophrenia" and this disease is still often incorrectly used to describe a person with a "split personality".
The bizarre, disruptive behaviour associated with schizophrenia and other mental illnesses such as bipolar disorder, increases the stigma.
As a result of stigma, people are often too ashamed to seek treatment and support from others. “I have learnt that there is no shame. Schizophrenia is a physical disease, much like diabetes and heart disease. As long as you keep mental illness hidden, you will never accept it yourself.”
“Parents also feel a great sense of loss. It is extremely sad to witness the transformation of an independent, well functioning person into someone who needs constant care and lacks insight into his condition. You feel that your dreams and ambitions for your child are gone. I had to learn to be more realistic and to lower my expectations. This has enabled the whole family to share and enjoy the activities and accomplishments that are within Andrew’s capacity.”
The effect on siblings
Heather has had to make a point of not being swamped by the illness and thereby neglecting her own needs and those of her daughter.
“Because caring for a seriously ill child is so time-consuming and exhausting, it is easy to neglect other siblings. Siblings share the guilt and fear experienced by the parents. They also worry that they, too, may become ill, or perhaps are jealous that their problems have been given secondary consideration. One must remember to include them in family education, since it is they, after all, who are likely to have long-term responsibility for their schizophrenic brother or sister after their parents have died,” says Heather.
Andrew's move to Hope House has enabled the family to focus on other aspects of their lives. Because she is no longer constantly drained and overwhelmed by his illness, she feels she has become a more supportive mother to her children.
Even though Heather has come a long way towards accepting Andrew’s illness, she still finds it traumatic at times. “It is still traumatic every time I have to call the police to have Andrew committed to hospital. But I’ve learnt not to feel guilty because I know I’m doing it on behalf of a family member who lacks insight and is incapable of making the right decision. Many parents fail to take the step and feel even guiltier when a family member commits suicide or dies as a result of their illness, such as in the case of parents who have a child with anorexia.”
What has kept her going?
When Heather learnt about Andrew’s diagnosis, she was referred to Cape Support for Mental Health, a support group in Cape Town for families of people diagnosed with a serious mental illness. She has been a committed member for six years and is now the chairperson.
“Through the support of Cape Support for Mental Health, I’ve learnt to live with his illness. Even though schizophrenia is a serious, chronic illness, it is important never to lose hope as treatment gets better and may one day improve his functioning and quality of life.” - (Ilse Pauw, Health24, 2003)
Andrew is now 30 years old. Health24 asked Heather for an update on his progress.
"Shortly before moving to Hope House (after a seven-month stay at Valkenberg Hospital), Andrew was invited to be part of a medical trial whereby his usual medication would be combined with another atypical anti-psychotic.
"He wasn't in a position to give any sort of informed consent for the trial, so I was approached to approve it, which I obviously did. I was so desperate to try anything that could possibly help, and by then he had tried every medication available. This new combination of meds seemed to really work for him and within a few weeks it became obvious that he was emerging from the deep psychosis that had overwhelmed his life for so many years. Most importantly, as he got better and was able to have some insight into his problems, he became completely compliant with the need to take his meds as prescribed.
"I regard it all as something of a miracle. In the past four years, he hasn't skipped his meds even once. He now lives happily at Hope House, but continues to come to my house on weekends, and it's actually a pleasure to have him here now. We chat very openly and he willingly participates in family social events and household chores - even volunteering to take on duties such as laundry, ironing, car cleaning etc.
"Most thrilling though, is the fact that about three years ago he decided that he wanted to earn his own spending money, and so he started a small home industry making an organic food product that he sells himself at various craft markets and other outlets. Also, he realised that in order for his small business to work, he would need to have more independence of movement, so as not to rely on me so much.
"He decided to try and get his driver's licence - which he managed to get!! He now has his own car and this has given him an enormous sense of achievement and independence, and has also relieved me of a lot of the time-consuming burden of being responsible for taking him wherever he needed to go.
"I still don't know what the future holds in store for him.... and I have learned during the past years to take things a day at a time, and to celebrate any small achievement. He talks about wanting to study in the future, and this may, or may not, happen. We'll see... in the meantime I am so conscious of the fact that his quality of life is vastly better than anybody predicted a few years ago."
Heather's advice to parents
"The best advice that I can give to parents and carers is that they must be patient, be supportive, keep in close contact with the psychiatrist who treats their loved-one, and be insistent on finding the best meds even though there is a lot of trial and error involved in this process. Also, be prepared to take the very difficult decision to commit your family member for treatment involuntarily, if necessary, because nothing will ever get better without meds, and it's up to everyone in the family to patiently try everything possible to get the best medicine regime.
"It's always devastating to have a child committed for treatment involuntarily, but it's important to remember that you are doing this for their own good... as they are incapable of making sound decisions about their own treatment. The problem won't ever go away by ignoring it, unfortunately."
Where to go for help
If you have a family member with a serious, prolonged mental illness, contact Heather at Cape Support for Mental Health at (021) 671 1573. E-mail: firstname.lastname@example.org.
(Ilse Pauw, Health24, updated August 2010)
Learn more about: