A carer’s journey from desperation to hope

Petra* is a carer we’ve been supporting as she cares for her daughter Lisa* who is recovering from an eating disorder. She shares her story as a mother desperate to find the right supports for her daughter and herself. 

Petra started caring for Lisa after regaining full-time care when Lisa was 10. Lisa had returned to her with an eating disorder that doctors wouldn’t recognise.

In 2019 when Lisa was 16, she went to hospital for a heart issue, and that’s when her anorexia was brought up for the first time. Petra was told her daughter’s condition was so severe she may not make it home. Fortunately, Petra persevered and worked with Lisa on her journey to recovery, which has taken many years and many daily struggles.

In 2020, Petra found herself with a neurological condition developed due to the severe stress and abuse in her caring role. Her family had cut her off because they felt embarrassed by her daughter’s condition. Her daughter’s friends also disappeared. Petra and Lisa became more isolated as their journey together progressed.

As her eating disorder progressed and Lisa went from wanting help to sabotaging help due to not wanting to lose control and gain weight, her moods and physical health impacted Petra in many ways and took control of every aspect of her life. Petra had regular visits to emergency departments for herself and Lisa. Hospitals made many promises to help. Petra and Lisa applied to all available supports and programs and even flew to Queensland to attend a live in program there. Most turned them away. At other times Lisa didn’t last very long in the programs, as she wasn’t able to eat the quantity required within the time they wanted her to. They seemed to only want to address amount eaten and weight requirements, not the underlying mental health conditions and trauma that were driving the eating disorder. It seemed they found that too difficult to deal with.

To Petra, psychotherapists seemed to refuse to take on trauma if an eating disorder involved and vice versa which ruled out most help options and caused mother and daughter to give up hope. Petra didn’t know how to help her daughter who was going from wanting help to not wanting help. Looking back, Petra now realises back then she wasn’t aware of the effects the disorder was having on Lisa’s brain.

Hope for mother and daughter

During a hospital admission, her daughter who was at the time suicidal, got connected with MIFWA Early Intervention Recovery Program for young adults. Her new MIFWA support worker spoke with Petra about what was going on for Lisa and referred Petra to family carers support. At the time, she had no idea what carer support would look like.

“I have been able to download, be heard,” said Petra. “I was so unwell I didn’t know how to put in boundaries and keep myself safe physically and mentally.

“I was connected with a peer from MIFWA’s Carer Services, and we spoke about communication strategies and everyday strategies I could put in at home.

“I did the parent support group and the workshop in the teenage brain was so helpful. Hearing other mums sharing made me feel not so alone. I had no family support and felt a failure as a mum.

“MIFWA changed my thinking. I went to coffee club and learnt how to use tapping. Tapping helped me to remind myself to start standing up for myself and to reflect on my relationships with others. It helped me on a subconscious level, it helped lift depression, improve memory and thinking and allowed me to put positive words into my vocabulary about me.

“I was also invited to a retreat for carers. It changed everything! The first night was so hard, though. But I chose to give myself permission to have a break, as I hadn’t had a day’s break in a very long time. At first, I didn’t feel worthy of being there. I was in a dark place myself and I felt I was being rewarded for breaking my child.

“But the retreat gave me space to think, to be quiet, still and mindful. It gave me space to be broken and start to be put back together again. Others took time to talk and share. Home doesn’t allow for that.

“Learning about kintsugi was a game changer for me. I was a very broken plate. I learnt to not expect to be the Petra I was and that not all glue does the same job, and you need different glue for different material. Some glue is more effective than others and it takes a while to find the right glue. This can be applied to the person we care for also.

“Being such a tactile experience really helped me.”

“I have learnt what it’s like to be around others who cheer you on rather than those that are toxic and drag you down.”

Petra also started doing a lot more journaling and kept in touch with the carers she has met:

“I have had lots of one-on-one sessions with different staff from the carers team, to talk, to learn tapping and other strategies which have been very useful, and I still use. I have learnt that I can create a new Petra.

“I have learnt what it’s like to be around others who cheer you on rather than those that are toxic and drag you down and I am now very careful as to who I have in my life and the things I do.

“At the carers’ retreat, I learnt the comfort of a neighbour and the importance of seeing familiar faces who are there to rescue and catch me and spur me on if I’m falling. It helps me know I will be ok.

“Now I schedule self-care into my everyday life. It is now a priority. I fill my day with things that bring me joy and take advantage of moments to be mindful. My week is loaded with me time and I’m strict with this now.

“I have stepped out and joined other community groups and have taken up some different short courses and learning for myself.”

Petra said she is decluttering her life in all different areas. She sees a psychologist who has helped peel back and reframe and see where to put responsibility and ownership when it comes to decisions made by herself or her daughter.

“When others share what it’s like for them and what’s going on in their lives, it helps with understanding and how to frame things in my life.”

Petra has found that weekly Pilates has helped her physical and neurological health:

“I have learnt to walk and no longer use supports. I am organising to go on my first ever holiday.

“I found out about the Body Esteem Program from MIFWA Carers emails, and I passed it on to my daughter. I signed up for the parent program and they helped me so much with boundaries and how to build our relationship in a healthy way. They have also given me so much guidance and support.

“My daughter is really engaging with the Body Esteem Program and she has got more help and support from the peer support provided. With guidance coming from someone with lived experience.

“Lived experience support for both of us has been the most helpful. When others share what it’s like for them and what’s going on in their lives, it helps with understanding and how to frame things in my life. I keep adding on to the boundaries and skills I have learnt. It’s the first time in my life I’ve allowed myself to have boundaries.

“I have learnt to allow myself to feel worthy. I would not be where I am today if I had not grabbed on to what was offered, even when I didn’t feel like it or didn’t feel worthy of it. I would have just checked out and still be struggling along.

“I have learnt, especially from MIFWA, that even if you don’t understand why, you should just have a go. I’m allowing myself to do things I have denied myself to do before and I will not allow limits to be put on me.”


*Names have been changed 

 

 


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