Carer burnout is not a “fun” experience for anyone to go through. From my own experience of severe anxiety just being in my daughter’s presence, to shortness of breath, uncontrollable itching sensations in my shoulders and bouts of uncontrollable emotion/anger/frustration: Crying (more like wailing), shaking in my body and being unable to stand up.
I had no family support available and I’d stopped taking my daughter to her familiar Respite Centre due to a personal suspicion about the integrity of one of the staff members. Also the amount of support I received was cut from 72 to 24 nights per year. On top of a drawn-out court hearing in 2014/15 to get Child Support payments from my daughter’s father, and asking the court that her father take some physical responsibility for Freyr (the latter of which was rejected and I was instead given Sole Parental Responsibility) …. it all SNOWBALLED.
I wasn’t able to cope with my daughter’s constant demands any longer…. the smell of faecal matter and urine saturating my environment and the sense of failure and aversion washing over me; not being able to escape either my thoughts about it and also the physical situation itself… Never being able to reach a state of feeling calm and relaxed and knowing I needed to clean “more shit”; not being able to close my eyes and feel security and connection within myself: Feeling empty and abandoned on the outside… Distraught from begging and pleading for support from Disability Services with the only response being “nothing is available” with services being cut prior to the “roll-out” of NDIS…
When I approached Child Safety about care relinquishment, I was told I would have to stand before a judge and explain WHY I can not care for my daughter. And, that if I placed her into “Care”, she could get moved around the State (Queensland) every 2 weeks and that I may not be able to see her. The thought of not being able to see my daughter naturally scared me – and it brought back to me the trauma of her father threatening to use his position (in government) to get Freyr taken off me if I pursued Child Support payments from him (when the relationship broke down in 2002-2007), and intensified my anxiety. I was going completely insane. I felt incompetent to work in my business and passed my work onto other therapists and my feelings of incompetence in work and being able to care for my daughter deepened. I started using alcohol to numb myself and distract from the constant stream of thoughts pressing on my mind. My self-esteem slid lower… I was 99 percent certain that I had no option other than to place Freyr into state care… The thought was unbearable and I took time time away for myself to make sure I was really making the right decision.
While I was away, I had time to recover and stabilise my mood/outlook: For 2 or 3 weeks I stayed in a retreat space in the Philippines with only solar light, a mosquito net, a small table and access to a raw food kitchen, drinking water and a small shop. For 2 weeks I spoke to no one practically… I just rested, read, wrote, dreamed/stared into the ether and started to feel peace and connection with myself again… being in nature and nurtured… And when I did begin to converse with “humans” again, I was surprised at actually being able to talk and enjoy the meander of a conversation… my brain/mind was cleared…. Control+Alt+Deleted quite well of not having to think of my daughter or what she is/was/could be doing and my next move to counter that and what else I should do next to survive: Fight and Flight baby. Nervous System stuck in Overdrive Big Time. . . Burn Out as a result.
That’s how it happens. It’s quite ironic that as a Massage Therapist, I know all about IT, and part of my advice to people is to get regular massages precisely so that IT DOESN’T happen… IE That the body NEEDS time to regenerate … when the mind can switch off… the brain stop THINKING, stop PLANNING… to just APPRECIATE and GAZE… (I’m great at it – When I have time)… It’s OUR time to CONNECT to Source and our Deeper Inspiration and to Listen to our Imagination (or God). And it is the time the body has to Heal itself and Regenerate. So when we deny that to ourselves – we deny our greater sense of Hope/Purpose and the feeling of being Connected to and Having a PLACE in the world. We are just consumed by “Work” with no Meaning or Time to Reflect: Tragic and unsurprisingly, the body can not sustain it (and being Highly Sensitive, I have less ability than most to do so than most).
Just prior to New Years Eve, I called my friend who was looking after Freyr with her four kids… Always professing to love Freyr, they had already been “wiped out” after 3 weeks… Not only my friend, but her 4 kids also were frayed and grimacing …. in a funny/not-funny head-kinked kind of way. Apparently the kids had all of Freyr’s noises and “echolations” copied down-pat – so there was Freyr and her noises – and then their echo through her compatriots constantly reverb-ing around my friend’s rather spacious concrete suburban house back in Cairns. (I’m sure Freyr was quite impressed and entertained). She had Freyr’s bags already packed and ready to go… the Respite House was due to pick her up in a bit over a week. Through her relay of the situation, we were both in stitches, and though I was experiencing a sense of complete relief, the thought that inevitably I would have to reenter the situation again at some point and be “stuck” in the onslaught, filled me with quiet dread. At one point, my friend said: “If anyone judges you for putting Freyr into Foster Care I’ll rip their bloody heads off and shove them up their bloody arse!”
Finally, I felt like someone “got” me.
Didn’t help the broader situation though.
After I returned to Cairns, or maybe it was when I was on my way back, my friend in Philippines asked what I was going to do, and I said I didn’t know. He then asked me to go and live with his family in Puerto Princessa with Freyr and that they would help look after Freyr. I was kinda surprised… no one had ever offered to help me with Freyr before… I considered it, against the other option of placing Freyr into Care, and it didn’t take much to get me “across the line”. I still wasn’t in a really great space… was “just” able to deal with day-to-day things… and had a further 2 weeks to myself back in Australia before I was due to pick up Freyr and had to make a decision. (I later realised there was a payoff for him: He wanted to go and work in Manilla and see his sister and needed financial support for his parents while he was away – but it worked out and helped all of us – and I’m grateful to God that I didn’t have to put Freyr into Care).
I humbly accepted my friend’s offer and moved with Freyr to the Philippines in January 2016. And that was the beginning/start of our journey into a more inclusive and fulfilling fun life for my daughter and an eye-opening personal journey of learning, discovery and adaptation for myself. Though at times incredibly challenging, in terms of living conditions and unfamiliarity of language – we have been incredibly blessed and welcomed – and sought to make “the best of things”… Freyr made many new friends and I have felt supported by living in the caring cultures of Philippines and Indonesia; I have been able to cope with her care while also having the opportunity to develop my own learning – in natural building with bamboo – from local people where we have stayed over the duration of the past nearly 5 years.
Both in Philippines, and in Indonesia where we have resided since 2017, I have felt a sense of support for myself and acceptance for/with Freyr. I have been able to pay salaries from our Child Support Income to have help and support with Freyr’s care and have been able to have time to focus on my own learning. And, I’ve built a house here in Bali where she can be safe/contained AND have social engagement and varied interaction (through our previous volunteer ‘program’) and where I myself do not feel so isolated and have opportunities to pursue my own interest and passion in Natural Building and Sustainability.
It’s ‘comforting’, I guess you could say, to be able to go our to the local market and to be treated with kindness and care… People always want to know about Freyr and offer her food/drinks and comment on her nose (they love the shape of her nose)… She can sit down and take in the scenery while I buy vegetables/groceries and people always alert me if she gets up to go anywhere… There’s a sense of humour in the air and laughter sprinkled about the place… It feels as though nothing’s “too much trouble” and even though my language skills are still quite limited, we can communicate enough to have a basic conversation and share smiles.
Even though I still face the daily “dangers” of eg. Freyr taking it upon herself to try and “cook” something – usually tipping an entire pack of dry noodles into the deep fryer and turning the gas on (because I forgot to put the lock on the fridge and unplug the gas)… on the whole, life is way less stressful for me as a Carer. I do still need to escape her “noise” from time to time – whether just by going for the walk on the beach 15min drive away or spending a night or two out of the city.
When it came to returning to Australia last year in August prior to Freyr turning 18 in December to plan for her needs into adulthood, I felt a horrid sense of anxiety and distress sweep over me; I honestly I thought I’d “forgotten” about it and “moved on” to “better” things in my life… but once again I felt sad/upset and traumatised by the thought of trying to live in and support Freyr in my own country!
I lasted around 3 weeks in a state of “survival” without sufficient income or housing to support Freyr and then dovetailed back to Bali to our home here to await the processing of my Carer Payment and Freyr’s Disability Support Pension – and to complete the process of planning for her NDIS support. We were both incredibly relieved to be back “home”, but leaving Australia resulted in all the above processes being cancelled. Bummer!! And following that, a slight sense of mental disarray at how the hell I would provide for Freyr and my needs when her Child Support payments ceased when she turned 18.
Now we are battling to try and get a support plan put in place so Freyr can return to live in Australia (the Australian Government won’t support her to continue living in Bali – even though she has a house and carers here and finding support locally is much cheaper than in Australia where she would be needing over $5000/week care budget). We are now ready to launch our local business and create opportunities for others to become involved in our plans for creating a Revivement Village where other families may come and stay and have support WITH their family member with a disability.
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