Parents ‘wing it’ with lack of support
For more than a year Jane Adams carried the weight of keeping her teenage daughter alive.
The teen was 14 when she was diagnosed with an eating disorder in January last year.
Adams recognised the warning signs. She had battled with an eating disorder herself when she was younger.
As a mum, she knew her daughter better than anyone, but she did not know where to turn for help.
Adams, from North Canterbury, is one of thousands of Kiwi parents and caregivers trying to support their children through a mental health disorder.
Their support is crucial for helping kids recover, but there is little support available for caregivers themselves.
Researchers at Auckland University of Technology (AUT) and Eating Disorder Carer Support NZ (EDCS) have teamed up to better understand what supports are available to caregivers of people with eating disorders in particular, their experiences, and how that support can be improved.
Caring for someone with a mental health disorder can come at significant personal cost, researcher Rebecca Woods says.
“This can be financial, emotional and psychological. It can impact jobs, physical health and relationships. Because people often care for family members, this cost is often unrecognised or under-recognised.”
The impacts are often long-standing and can persist when active treatment has ended.
New Zealand is lagging behind with some of the support services offered in other countries, Wood says.
“We hope that by highlighting the need and cost of caregiving, we can provide evidence why some of these initiatives are needed here.”
As a child, Adams’ daughter was “highly anxious” and “quite depressed” a result of living through the Canterbury earthquakes.
Adams believes the anxiety and depression branched out into an eating disorder.
“There was a lot of crossing over in what she was experiencing in her mind and ... the anxiety and the fear that she’s lived through.”
It is common for people with an eating disorder to also have at least one other mental health diagnosis – most commonly anxiety, depression, substance abuse, or PTSD.
Adams took her daughter to their GP who did not recognise her as having an eating disorder. It wasn’t until she ended up in Christchurch Hospital with a low heart rate and low blood pressure that Adams felt she was taken seriously.
“I was made to feel like an over-worrying parent, to feel like I was putting my own history and experience onto her.
“I felt so guilty. Why didn’t I trust my own intuition when I knew she was ill?”
But as a mum, Adams knew her daughter best.
“We know our children better than any health provider and we have to be able to be trusted, we need to be listened to.
“The guilt was horrendous because ... as a mum, you’re meant to keep your kids safe. You know you’re meant to know. You’re meant to feed them – that's part of your job.”
Her daughter was referred to Princess Margaret Hospital’s (PMH) outpatients eating disorder clinic, but it was a month before she could get in.
In the meantime, Adams kept her daughter alive.
“We were just left to our own devices, left to struggle and me left to try and keep her alive.
“But little by little, I managed to get her up from about 500 calories a day and by the time we got to PMH, I think I’d got up to about 1500 a day.”
When her daughter was discharged from PMH, deemed a “successful recovery story”, Adams felt the impact of what they, as a family, had been through and the lack of support that followed.
“We were basically just given a discharge, a bit of paper that we wrote down a few things on and [it] kind of was like, well, good luck.”
The stressful months of keeping her daughter alive had put strained her own mental health, her marriage, their finances and her younger daughter too.
‘We were just winging it’
Lauren and Isobel Bradbury’s daughter was 12 when she was diagnosed with anorexia.
The pair, from Hawke’s Bay, are both medical professionals and recognised the severity of their daughter’s condition. But dealing with it was another matter. “We were just winging it,” Lauren Bradbury says.
They saw a private psychologist who could not help. It was the EDCS Facebook support group that saved them, she says.
The support group involves other parents who have been through the same thing, all sharing their stories, advice and support with each other.
“If we hadn't come across that, I doubt we would be where we are today.”
The Bradburys are from the UK so did not have a family support system here and found their experience “very isolating”.
“It was awful. It was the worst year of our life, you know, saving your daughter’s life. Unless you’ve lived with a kid that has anorexia, nobody will understand.”
It took a toll on the couple’s marriage. While EDSC supports hundreds of families, there needs to be more out there, co-chairperson and co-founder Sarah Rowland says.
Carers are “at the core of treatment for recovery”, but often they’re confused or overwhelmed and not able to adequately research any support options, she says.
“There’s a lot of confusion and a huge amount of deterioration that we see because carers simply either aren’'t aware of resources or support for them to access.”
Yellow Brick Road chief executive John Moore says deal with a lot of parents who are feeling overwhelmed with the pressure of supporting their children through mental health journeys.
“If you’ve got kids, you worry regularly. Good parents will worry more often than not. Adolescence – that can look terrifying even when it’s going well.”
Fear can be contagious though, Moore says.
“Young people can be very impressionable and if we treat them a certain way that can be predictive of how they see themselves, so it’s really good [for caregivers] to be mindful around trying to stay positive and not leaping to this idea of diagnosing or catastrophizing what they’re seeing.”
What can parents do?
Parents are experts in their loved ones and should trust their instincts, he says.
“Clinical expertise can be really, really valuable, but it’s not more important than the relationship that young people and their parents have.”
When your instinct tells you to, see a medical professional, he says.
“If your loved one is experiencing hallucinations or issues that look like eating disorders, then sure, you’re probably going to have a quicker route to get clinical support, but your relationship with your loved one’s still going to be really key to that.”
A lot of the focus in the mental health sector has been on plugging work force gaps, which is needed, Moore says.
“But if we acknowledge that families and parents are the most important people who are going to be achieving wellbeing for their loved ones, then you shift that clinical knowledge and expertise to being about something that supports people with useful information and advice.
“Most people that come through to our service have been trying to get their loved one mental health support for years and have never once considered getting support for themselves.”
The research AUT and EDCS is conducting begins with a survey that will be the first of its kind in New Zealand.
“We hope to show some of these issues that are being faced to really highlight them to make high level decision makers aware of the true effects which caring for somebody with an eating disorder has,” Rowland says.
Both Adams’ and Bradbury’s daughters are doing much better physically now, but for both them and their families, the mental struggle still lingers.
“You’re in it. You can’t leave. You’ve just gotta keep going, stay calm and stay strong,” Bradbury says.