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From time slips to visceral disquiet: the experience of mental health caring

Introduction by Croakey: As we continue the Speaking our Minds series this Mental Health Week, in the post below a carer comes clean.

Drawing from her own experience as a long haul carer for someone with mental distress, as well as submissions to 2019 Royal Commission into Victoria’s mental health system, Dr Caroline Lambert walks us through some of the “intricate, the peculiar, [and] the dark spaces” of her lived reality.

This is much more than an intellectual exercise: Lambert notes that many of the stressors on carers result from societal injustices, broken systems, inadequate resources, lack of support and compassion, and sheer neglect.

Lambert’s words beg the question: could fairer, better societies and systems lessen the burden of “visceral disquiet” that mental health carers are currently forced to carry?

**Readers are warned that this post contains references to suicidal ideation**


Caroline Lambert writes:

As my first decade of supporting a young person who “thinks all the thoughts”, and who feels deeply, quietly clicks over, I reflect on the contractions and contrasts; the dualities, the multiplicities, and the messiness of the experiences of those supporting someone with mental distress.

The experience of supporting someone is sometimes portrayed as an act of altruistic, selfless benevolence – which is an unforgiving portrayal that fails to capture the complex nature of the individual and the relationship: I am no self-sacrificing saint with endless reserves of support and solicitude.

This one-dimensional depiction does no favours in representing the diverse and intersectional identity and experience of carers, nor to consumers, whose relationships with that person or persons, may be characterised by violence, misery, or suffering.

Dr Caroline Lambert

Messiness of the caring experience

Society often demands neat, polished packageable narratives of caring, but “mental health” carers know that this sanitised version of “caring” is often not the reality. I get the appeal – I just know it’s a lie.

I suspect that the portrayal of one dimensional, benign carers is more palatable for mental health services to engage with – or to ignore. There is a payoff in perpetuating the myth of “carers walking alongside consumers” on their yellow brick road to recovery.

This photoshopped narrative allows for denial of responsibility by government and services – for continuing to inadequately fund innovative community programs for service users and sufficient carer resources.

Carers are rarely encouraged to explore the intricate, the peculiar, or the dark spaces of our experiences. I wonder if this is a hermeneutical injustice of kinds.

Perhaps then we can begin to explore the intricate spaces, in those moments where we hold two (or more) opposing truths?

The monotony and volatility of time

My therapist once told me that time was definitive, concrete and predictable. I remain unconvinced.

Many carers speak to the rubbery nature of time – the hours that feel like days, and the months that feel like a decade. When you are housing the person you support, and the world around you has shrunk to just those within the household, each hour can feel endless – particularly if you are attending to someone who experiencing suicidal ideation or self-harming.

As one woman in her submission to the 2019 Royal Commission into Victoria’s mental health system noted about supporting her brother,

I sat by his bed for many, many hours just letting him know I was there” .

So many carers have done and are doing just that. Watching. Waiting. Attending. Singing. Wondering. Particularly during that stretch of time between 3am and dawn.

This black hole of time can sometimes feel like the longest stretch for carers – a fraught time when many of us feel at “peak vulnerability” for haplessness and loneliness.

As a carer, the experience of time can, paradoxically – feel both tedious and volatile. I wonder if this contributes to our hypervigilance – even in the most monotonous of times, we can feel heedful and sharp eyed. Never quite trusting the quiet moments.

The weight and the gift of caring

The weight of providing long-term care, is captured throughout the final report of the recent Royal Commission into Victoria’s Mental Health System, in which families spoke of caring as placing, ‘a soul-destroying burden on families…’.

In Tandem’s submission, one carer notes,

Families are at the end of their tether with this broken system.”

We know that it is not the person with psychic distress who is the burden on carers, rather it is the absence of safe, compassionate, accessible support. Without adequate supports our rights to education opportunities, employment, stable housing and social participation are eroded.

For me, the gift comes in moments of accidental reciprocity. I have gained clarity – from reimagining my own priorities and the collective priorities of our family – leaning into a newly created space to explore my own history of neurodiversity and mental distress, and reaffirming both the value and precarity of life.

I have learnt that sometimes carers have no choice but to sit with obverse truths – to experience the clash of despair and grief; joy and gratitude.

The “doing whatever you can to keep the person you support alive” – but also understanding the pull of a different world.

Carers are not often permitted to publicly consider the peculiar or bleak spaces that supporting someone can take you to, but in those moments when the person you support is experiencing relentless psychic pain, and no relief can be found, I confess to wondering about the arrogance of imposing a sometimes-wicked and unjust world on someone who no longer wants to be here.

I will always argue that people should have the right to do what they need to do, but I also recognise the inconsistencies and contradictions inherent in my position – knowing that I have and would do almost anything to ensure that the person I support stays earthside.

It is no secret that caring for someone – or for many people – can contribute to our own feelings of mental distress. Another carer in a submission to the Royal Commission writes,

Six days ago I buried my husband. He couldn’t take any more stress. He had a massive heart attack. I have developed heart problems on top of extreme anxiety on a daily basis.”

As carers, our relationships and functioning within the family can become ruptured. This stress and rupture is not a product of an illness or disease – this is the product of societal structures and systems that are not responsive, compassionate, fair, equitable or just.

Even in the context of widespread system reforms within the State of Victoria I still hear carers saying, “nothing is changing,” and that the reforms have yet to make real change in their own lives – or in the lives of the people they support. One carer writes,

My life has literally been in a state of depression so much, that at times it would be easier to simply not be on earth. This is not an option but sounds easier than constantly dealing with my lot.”

The wickedness of the world around us  continues.

The feelings and doing versus the embodied experience of caring

Legislation and regulations recognise that caring is as an action, a behaviour or a doing if you will. The breadth and depth of “doing” in our role of carers is extraordinary.

We are often advocates, supporters, cleaners, cooks, drivers, friends, financial and legal managers and facilitators, and entertainers. Many of us also push back on the roles ascribed to us by the medical system – we do not want to be the medicators, the weighers, the measurers, or the regime regulators.

Sometimes the feelings associated with caring are recognised by mental health services, by government, by researchers and society at large – albeit in narrow and tightly bounded ways. However, the embodied way that carers experience caring is rarely explored – unless it is couched in medicalised ways of assessment – through our blood pressure, diabetes rates or rates of stroke.

While I understand that this kind of framing of the care experience matters, what characterises my own caring experience can best be described as a “visceral disquiet,” which I would identify as a deep instinctive, inward feeling of unease and impact.

The gut-wrenching moments of needing help for the person I support – but not finding any, the gnawing worry of years of school refusal, or of a loved one sleeping rough. Visceral disquiet ruffles my spirit when I wonder if the savagery of today’s world will be too much to bear for the person that I support.

This “visceral disquiet” is the opposite experience of an ‘embodiment’ which signifies a feeling of safety, a fit or a snugness. If there was an opposite for the Danish word of hygge – then this, is it.

* Dr Caroline Lambert is Director of Family, Carer Research at Tandem Carers and is a proudly neurodivergent academic who is based at RMIT university. Caroline has lived and living experience of supporting someone who thinks and feels deeply.

For assistance:

Lifeline 13 11 14 www.lifeline.org.au

Suicide Call Back Service 1300 659 467 www.suicidecallbackservice.org.au

beyondblue 1300 224 636 www.beyondblue.org.au

13Yarn: 13 92 76  13yarn.org.au

Kids Helpline 1800 551 800 kidshelpline.com.au

QLife: 1800 184 527 https://qlife.org.au/

Check-In (VMIAC, Victoria): 1800 845 109 https://www.vmiac.org.au/check-in/

Lived Experience Telephone Line Service: 1800 013 755   https://www.linkstowellbeing.org.au/


Acknowledgements

The #SpeakingOurMinds series of articles was conceived and organised by mental health and human rights advocate Simon Katterl and is edited by Dr Ruth Armstrong.

It is published to coincide with Mental Health Week 2022 (October 8-15) as a vehicle to privilege the voices of lived experience.

Bookmark this link to follow the series.

The series is supported by Mental Health Carers Australia, Simon Katterl Consulting, Tandem, First Nations Co, and Mind Australia. The supporters respect the independence of the authors and the editors.

On Twitter, follow #SpeakingOurMinds.