February 13, 2015
Looking after a mother who has stress disorder, Gina Delaney says more support should be given to families dealing with mental health issues
First published: The Irish Times, 10-Feb-2015
Gina Delaney cares for people in both her professional and personal life. She works as an outreach and development manager with the Carers’ Association, and she also looks after her mother, who sufferers from a serious stress disorder. Delaney, who has two children, says that while the health system has improved, there is still a way to go with supporting the families of people who have mental health issues. This is her story.
“As a daughter of a single mother with schizophrenia, I consider myself a supporter, not a carer. To borrow a phrase, I care about her, not for her.
“I grew up in a home where things were serious a lot of the time and scary some of the time. Life was usually intense and there was little room for fun. My mother was dealing with survival for herself and her family, and was preoccupied with keeping a roof over our heads and food on the table.
“But when she couldn’t cope she went into hospital and this added to the confusion in my mind. Aunts and uncles stepped in and welcomed us into their homes, and I will always feel grateful to them for that, but it is very unsettling to move into another family’s space and routine as it reminds you how much you wish you had that for yourself.
“When no one told me what was going on, I imagined the worst, and even today I have to convince myself of things being untrue because the false beliefs we form as a child become very strong and powerful and stay with us into adulthood.
“They make us become who we are. I believed, falsely, that it was my brother’s fault because he was louder than me and should have known not to upset our mother. I believed that if he was quiet, everything would have been fine. Likewise, if I was quiet and good and didn’t cause any trouble, then everything would be okay. So that’s what I did.
“Every time my mother came out of hospital we went home with her; but we weren’t told how to manage her medication, nor about any side effects that developed. We had no idea how to look for clues that would indicate any deterioration in her health. And if we did notice any signs, we didn’t know who to talk to or who would listen.”
“I have some bad memories of side effects and, in particular, of times when she wasn’t coping and needed assistance. I felt overlooked, unheard and powerless. I wasn’t involved in the development of any care plan, even though it was me and my family who were looking after her upon discharge from hospital.
“Mental health has an impact on the whole family and, thankfully, this is being recognised more now. The services are much more accepting of family involvement but I think real vision for change will be when both the service user and their family are seen as active and equal members in the recovery planning process.
“Services need to be offered to the whole family, as they have to recover from the experience of a mental illness. I was in my 20s before that happened, and it came as such a relief finally to be able to talk to someone about my experiences and to make some sense of all the false beliefs I had built up over the years about myself and my past.
“Supports for children should come from as many places as possible. I missed quite a bit of school throughout the years, and changed schools a lot too.
“I greatly appreciated when a teacher was kind, as children don’t want people to know things are difficult or different at home so they generally don’t say anything. When there is anything stressful happening in a child’s home life it has such an effect on all areas, so any additional supports that schools can provide to young carers is a positive step.
“When it comes to helping parents with mental health difficulties, and their children, the State needs to step in and provide extra supports. But this needs to be done in an appropriate, gentle and meaningful way, so families feel truly supported and not judged. There needs to be a culture of positive assistance from the top down to allow good people to do a good job.
“But stigma still exists and prevents people from seeking support. Labels such as ‘disability’, ‘illness’ and ‘psychotic’ have negative connotations, and prolong stigma in ourselves and in other people. Labels are necessary at times, but they create a ‘them’ and ‘us’ culture. They also limit us because we don’t always fit neatly into one box. We need to drop the labels and see the nurse, see the mother, see the daughter and connect with that person. She may be your patient, but she’s my mother.
“Having said that, there are so many good people working in the ser
vices who really want to make a difference to the people they meet every day. But somewhere along the way this gets drained out of them and their abilities are hindered by the system. When staff must spend more time writing about the person than being with them, then something is wrong and it needs to change.
“The experiences I have acquired in my life through mental illness have been difficult lessons. And while I would not have chosen them, neither would I change my past because it has made me who I am. I can use my experience to influence positive change and use my journey with my mother to make a difference.”