Karl* is always on edge because he is constantly worrying that his daughter, who has a severe mental health problem, might leave the oven on or the front door open.
“It has become commonplace for her to be absent-minded, you can’t trust her to stay unattended.
“For instance, she could very easily switch on the oven and then go to sleep,” he said while discussing the stress and emotional burden of caring for a person with such mental health issues.
Karl was one of seven interviewed during a study that explored the impact on family caregivers of providing care to a relative with severe mental illness.
It was published in the first edition of the Malta Journal of Health Sciences. Authors Michelle Fenech and Josianne Scerri found that caregivers experienced a range of negative emotions and physical responses.
After interviewing the caregivers, who were given fictitious names in the study, the authors painted a picture of caregivers who had to face a range of emotions including sadness, worry, guilt and frustration.
The feeling of loss was also real.
“I am hurt because I want him the way he used to be,” said Daniela, while Anne added: “This week I was thinking about my son and I was saying to myself: were he not depressed, he would be married now.”
The researchers found that female caregivers often blamed themselves for triggering certain behaviours and that parent caregivers tried to cope by themselves, so not to burden siblings who were perceived as having responsibilities of their own.
Caregivers often felt stressed, tired and burnt out by the increased responsibility.
This week I was thinking about my son and saying to myself: were he not depressed, he would be married now
“It affects me in the sense that I am unable to relax, that I neglect my personal needs,” said Joyce. Steve also spoke about the physical repercussions of caregiving.
“She has honestly got me miserable… I suffer from heartburn on a daily basis caused by the anxiety.”
He also spoke about the financial strain that came with caring for a relative with mental health problems; an issue that frequently emerged.
“The benefits she receives do not always cover her needs,” he said.
Stigma was also frequently mentioned. Joe spoke about his relative’s experience at work after spending some time in a psychiatric hospital: “On returning to work his colleagues thought he would do something irrational and they were scared that he would commit suicide.”
Daniela, whose son suffers from depression, added: “If we go somewhere, they will just stare at him... my son is physically not the same as he used to be… I’m aware of their behaviour but he doesn’t mind, unlike me.”
The authors spoke about the need for effective anti-stigma interventions to empower caregivers.
They said caregivers also needed care and that “formulated interventions and care plans should then target the unique needs specific to each patient-carer” group.
Caregivers needed to be made aware of entities that provided support within the community and “sufficient resources also need to be provided to ensure effective community support to family caregivers”.
*All names changed to protect identities in the study.