Who cares for carers?

Abstract

Domestic violence “refers to violent behavior between current or former intimate partners—typically where one partner tries to exert power and control over the other, usually through fear. It can include physical, sexual, emotional, social, verbal, spiritual and economic abuse” (Mission Australia, 2021). While the number of people affected by domestic violence will probably never be truly known given the often private nature of the crime, it has been estimated that over 1.6 million women and 548,000 men in the author's home country of Australia have been affected by physical and/or sexual violence through the hands of either a current or previous partner (Australian Institute of Health and Welfare, 2022).

In recent years, there has been an increased academic focus on developing ways to assist women and men who have experienced domestic violence to navigate the COVID-19 pandemic (Boucher, 2023; Kourti et al., 2023), to return to the workforce after experiencing a domestic violence incident (Wilcox et al., 2021), and with understanding the effects of domestic violence on counselors and other support services (Rodriguez et al., 2021). In Australia, a range of government programs including 1800 Respect, the Men's Referral Service and in New South Wales, the Women's Legal Service have been developed to provide support to people affected by domestic violence, including the provision of mental health supports. Outside of the government sector, care is also provided by third parties including the churches (e.g., Baptist Care and Catholic Care), as well as through the work of GPs (general practitioners) and other Allied Health Professionals. Whilst each of these groups play an important role in caring for someone who has experienced domestic violence, often those of the front line are not government, health or emergency service professionals but rather are the family members of the person experiencing domestic violence. In 2018, there were some 2.65 million people in Australia who provided informal care to a friend, family member, or neighbor (Australian Institute of Health and Welfare, 2023).

The purpose of this paper is to offer some auto-ethnographic perspectives on what it is like to care for a loved-on who has experienced domestic violence and has on-going mental health issues in the form of post-traumatic stress disorder (hereafter PTSD¹). With reference to a framework for caring that has been put forward by Tronto (2020), I want to draw attention to the individual nature of the caring relationship, as well as the important role of family carers in caring for domestic violence survivors (Domestic Violence Prevention Center, 2023). I also want to articulate my own personal perspectives on the type of support carers should receive from government and the community at-large—a social justice issue that was particularly prevalent for family carers during the COVID pandemic (Cheshire-Allen & Calder, 2022). I finally also want to observe that whilst there is a recognized link between experiencing domestic violence and experiencing secondary mental health impacts such as PTSD; to-date there has been less attention given to articulating the personal mental health stories faced by family members who are acting as domestic violence carers. Such stories can supplement the important empirical evidence available on the mental health and other challenges faced by family carers (Labrum et al., 2021). They are important because carers live the roller-coaster ride of domestic violence trauma with our caree. We experience many of their emotional outbursts and down moments, but also take pride in their well-earned victories and the strength of character they demonstrate. However, being a carer is physically, mentally, and emotionally draining, often leading to secondary traumatization amongst family members (Todoroff, 2021). In this sense, our experiences are similar to those experienced by domestic violence advocates, counselors, nursing staff, and other health professionals (Iliffe & Steed, 2000; Petersson & Hansson, 2022; Slattery & Goodman, 2009). As Rachel Remen once argued; “the expectation that we can be immersed in suffering and loss daily and not be touched by it is as unrealistic as expecting to be able to walk through water without getting wet” (Rachel Remen in Supportive Care Coalition, n.d.). In the pages that follow, I want to reflect on some of the challenges that I experienced as a carer for someone who has experienced domestic violence.

Like anyone, I have made my fair share of mistakes in the course of being a carer and will continue to do so. I hope that the ideas I will put forward here will have relevance for other carers going forward and thus can be seen as a complimentary data source along-side traditional empirical carer studies (see Walters & Petrakis, 2023). The information that I present here are drawn from conversations over the years with my caree, other family members, psychiatrists, and psychologists.

Tronto (2020, pp. 105–108) argued that there are four distinct, but also interconnected phases of caring (1: Caring about; 2: Taking Care of; 3: Care giving; and 4: Care receiving). The first phase involves acknowledging that another person is in need and that one might be able to render assistance. Such assistance is both “culturally and individually shaped” (Tronto, 2020, p. 106) and for this reason it is necessary to say something about the author of this paper. I am a white middle-aged man in my 40s living in Australia. I say this not to provoke any particular discussion but simply as a precursor to saying that there was nothing in my early life that would have marked me out as being worthy of writing a reflection like this. A book made of my childhood years would have been in the word “boring.” I did not come from a background that would be described as affluent, but neither did I ever go without; nor did I ever have first-hand experience of the prejudice or discrimination that are the daily life of LGBTQI, and other peoples affected by domestic violence and PTSD and the people who care for them (see Buiten & Naidoo, 2020; Hare, 2019; Santos, 2022). I therefore do not wish to claim insights or understanding beyond the limits of my own experiences.

Over a decade ago, I met a wonderful woman called Evie (this is a pseudonym). This remains one of the most important moments of my life, one where I recognized what it means to love someone unconditionally and to receive similar love back in return. It is this idea of unconditional love that underpins my own personal motivation to care, it is both an individual decision but also a statement of what I feel marriage should be in society but often isn't. On this, I was also inspired by Evie's ability to care for others around her prior to meeting me. Before she met me, Evie was married to a man who from all reports was guilty of physical, financial, and emotional violence against her. When I met Evie, I saw a woman who was hyper-vigilant, cautious, skeptical of the judicial system and other sources of authority, but one who was also one hundred percent devoted to protecting herself and her first child that she had with her ex-husband. She is one of those amazing women who in-spite of all of the pain she had experienced from people in her life is a survivor, not a victim of domestic violence.

However, over time as the trauma from her previous relationships came to intrude on her ability to live her life I have assumed greater responsibilities as her carer. However, even with me willing to take on the role of being carer, the third phase of caring concerns competence of this decision. On this, I have always wondered if I am an appropriate carer for Evie. Tronto (2020) includes issues of competence in the phases of caring on the basis that successful caring is underpinned both by a level of commitment to the task but also one's ability to complete the task effectively. However, is it fair to expect professional competence amongst familial carers?

When I first met Evie, I had no prior experience of domestic violence; being fortunate to live in a family situation, which was not impacted by domestic violence issues such as apprehended violence orders and court processes. Family carers often do not view themselves as being particularly well equipped to help and can be scared of the consequences of helping our loved ones in the wrong way. As carers we have sometimes faced animosity from our caree when they have been of the opinion that we have not acted in their interest. Our caree rightly has an expectation of what we will be able to do for them and inevitably we do not always live up to these ideals. There is always more one could do, but the challenge is often to remember that as a carer you need to value yourself based on the good work you are doing. As we work to manage the complex relationship between our caree and the wider family, it is not un-common for wider family members to be even less equipped than us to understand what the caree is going through and as a carer it is your responsibility to protect your caree, whilst also looking out for children and other dependents.

The idea of responsibility causes me to reflect on the specific act of care giving, which is the third component of the Tronto (2020) framework. Given the fact that I am married to Evie means that the act of caring is interspersed with normal family processes and activities. Tronto (2020) has argued that the success of caring will ultimately be predicated on the receptibility of the caree, something that can be challenging if it requires the caree to surrender some degree of autonomy or control. Over the course of my time with Evie we have faced a number of challenges, which have collectively put us on the back foot financially and emotionally including being forced to move over fear for our personal safety from her ex-husband; suffering through break-ins where considerable amounts of my wife's personal possessions were taken; and experiencing run-ins with her ex-husband and others. While I can never claim to experience these situations in the same way as Evie, as the partner of a domestic violence survivor I live many of her day-to-day experiences with her. If we have to visit a location or see someone or something that is triggering to her, I experience her often negative emotional responses. One of the biggest challenges I have faced is remembering everything that may or may not trigger her. When I slip up in this regard, I often find myself defending my record, noting the many times that I have kept an issue that might make her upset off her radar screen. For me, such an argument logically makes sense but for Evie it is cold comfort as she wrestles with the immediate nature of the situation I have inadvertently put her in. From the beginning of our relationship, we have often said that we can finish each other's sentences. But the issue of what will and will not trigger an emotional reaction from a domestic violence survivor who is experiencing PTSD is a constant reminder of the fact that on many levels there is always a chasm of understanding between the caree and their carer.

There is also a chasm of understanding between what we think the experience of caring will be like and what reality often is. When Evie was admitted to a public mental health unit and then released, I faced the uneasy reality that contrary to my expectation there was really no-one I could call on for help as I watched her health condition deteriorate. This might seem strange to say, after all surely a carer has various support phone lines, online materials, their own doctor and in extreme situations the police and other emergency service personnel to call on. On the one hand this is true, but all such people are severely limited in how and in what form they can intervene. This is a good thing in the sense that no member of the medical fraternity or the like should ever be in a position to unilaterally act for an individual experiencing domestic violence and/or PTSD without due process. At the same time, however, it is depressing for a family carer struggling to assist their loved one, knowing that only when something goes very badly wrong or the person you are caring for reaches out for help themselves will someone who is professionally qualified be able to assist. As carers we believe that there will always be someone to support us, but in reality, there often is no-one. Aass et al. (2022) have drawn attention to the fact that when doctors and nurses focus on the treatment of their patients they can often ignore the feelings and situations of the wider family. In some cases where the person experiencing mental health issues is being either emotionally or physically abused by their family, such an exclusion of family from their recovery is entirely appropriate. However, in other cases when the family's desire to help is genuine and well meaning, I agree with Aass et al. (2022) that empathy from the medical practitioner would go a long way to helping the wider family unit with which a patient they will ultimately live with long after acute support has ceased.

When I reflect back on Evie's time in hospital, I know that I will forever be viewed, in part, as being responsible for her being in there. What ultimately has given me some degree of stability was Evie's subsequent recognition that she needed to find a good psychiatrist and other medical professionals to support her long-term recovery. Her ability to recognize that she needed help is a mark of Evie's character and I admire her enormously for taking the step and asking for help and listening to advice seriously when it was provided. I know that some carers reading this will not have experienced this in their caree. I hope and pray that in the future your caree will be able to recognize that they need help. This is not to suggest, however, that Evie's relationship with the medical establishment has always proceeded smoothly. One of the most traumatizing moments of any of our lives was when Evie was readmitted to a public mental health facility. Being able to hear her being forcibly restrained by ambulance staff and later discovering that she was physically hurt as a result is something that no family member would ever want to hear. Evie has subsequently criticized me for not protecting her and this is one of the biggest challenges for any carer; how do you protect your family member whilst also listening to the advice of medical professionals saying you are doing the right thing by letting them be taken care of by the system? Even after Evie reached out for psychiatric help, she did not immediately find the best person. Her initial contact was with a person who worked effectively in women's prisons but was ill-equipped to assist someone who was experiencing trauma whilst trying to hold down a job. Because of her experiences with domestic violence and other instances in her life Evie has now been officially diagnosed with PTSD after decades of trauma. As her carer I see some of the typical characteristics of PTSD in Evie. However, I am always wondering what other symptoms she is also experiencing silently, unobserved by family and friends.

Because it has taken time to get a diagnosis for Evie and because her PTSD pervades different parts of her life, the effects on me as a carer have built up incrementally. However, when combined with other issues in our family such as our youngest child's attention-deficit/hyperactivity disorder diagnosis; over the last few years I have been experiencing increasing levels of stress and anxiety. It started with muttering ideas around self-harm against myself, struggles being intimate and long periods of focusing on negative thoughts about my future. New Years and major festival events such as Christmas are particularly challenging. How can I take joy in the last year for example, when, pardon the blunt expression “it was crap”? How can I look forward with hope for the next year, knowing that chances are it will be just like the last and that I will be ultimately “satisfied” by just making it through alive? Knowing that there is tension between parts of my family and Evie makes it difficult to relax and enjoy family events. I am always happy for people that I see enjoying themselves over the Christmas break, but I always become depressed given that I am constantly on-guard to help diffuse issues if they occur. Interestingly, if I reflect on it, I had a similar emotive response to the opening up of society after the COVID-19 lockdowns—seeing people out mixing with others was great for them (and deep down I am happy for them)—but at the same time in a perverse way I enjoyed lockdown because everyone was closer to being like me.

And then, in May 2022 and in spite of already being on anti-anxiety medication I suffered a stroke. By the grace of God and Evie's quick intervention to get me to a hospital, I know I dodged a bullet. I was surrounded by people in the rehab ward, people like me who are in their 40s who were effectively bed bound nearly a year after their stroke. And here I was able to walk into the ambulance largely unaided. However, while the stroke doesn't seem to have given me any long-lasting physical symptoms of note, it has certainly affected my cognitive abilities, memory, levels of anxiety and the like. In addition to causing me to reflect on my own mortality—no longer can I say proudly to Evie and my kids that after 40+ years the worst medical issues I ever experienced was a cut wrist—it has also caused me to reach out to medical professionals including psychologists and psychiatrists with renewed vigor. It has also forced me to face the question as I struggled to re-integrate myself into family life—would it not have been better if the stroke had killed me? Such thoughts flew through my head repeatedly whilst in hospital and once I was home. I was also fearful of being home as the rehab ward and operating theaters, whilst scary in their own right, gave me a respite from being a family-carer. Knowing that the stroke was probably caused by an atrial fibrillation, which in turn may have been caused by stress means that no longer can I avoid considering the effects of being a carer on my own physical and mental health. What has been interesting, however, is that during my time in hospital and recovery (which is still ongoing) I stopped just being Evie's carer, she became a carer for me as well. This reversal of roles has led to the final stage in Tronto's (2020) stages of care, care-receiving, where the person receiving the care responds to the care being provided.

The short reflection you have just read describes some instances from my own experience as a family-carer. While the penning of this reflection has been valuable to my own mental health; in Australia where the author resides there are some 2.65 million people who provide support or care to a friend or relative (Goldcoast Health, 2020). Each of these people have their own story to tell and thus I am in no way unique. I have written this reflection anonymously in part to protect Evie; after-all, the last thing I would want is for a reader to identify her by connecting my name to my professional affiliations listed on this paper, to my social media platforms, to my contact lists and eventually to Evie's work history and personal relationships. While I would never seek to call out by name the people and organizations who have harmed Evie over the years—the decision whether to do so should be made by Evie alone—by focusing on them I also feel that I would be giving value to people who don't deserve it. Instead of looking to the past, I wish to focus on what I might be able to contribute to a debate over domestic violence in the future—it is a personal reflection and while my thoughts will not resonate for all readers, please bear with me. In doing so, however, I also wish to be heard anonymously because I don't wish to be classed as someone who is exceptional because of what I have tried to do to protect Evie. I know it is cliché, but what I have done is what I would expect anyone to do who was in my situation—Evie is my wife and I love her. Within my limited range of experiences, I hope that my reflections and the insights that follow will offer some assistance for other carers. I would also challenge all readers to listen to other carers they may know because every one of them has a story to tell.

If I had one message that I wanted to leave the readers of this paper with is that the families that support people experiencing domestic violence are both complex and worthy of support. Day to day we do suffer from the stigma from being perceived by some to be living in a dysfunctional family environment, which can manifest itself in cold shoulders on the street to being distant and misunderstood and marginalized at work. For those outsiders who read this I would counsel you to realise the stress that such responses can cause for carees and carers. How society perceives us can add to our ability to deal with issues that are already often all encompassing and debilitating. For instance, I can vividly recall driving for over 2 h in peak hour traffic after work to collect kids from after school care to go and see Evie in hospital in another part of the city, not knowing if or when she would be released from the mental health unit. With family out of the country and with no friends to talk to I had time to think, I had plenty of opportunity to dwell on the worst possible outcomes. Was it worth just giving up? Ultimately it was my kids and Evie who got me through it, but I would be lying if I didn't say that it was a serious consideration.

To survive, I have had to humble myself and recognize that it is not in my power to change the world. Sometimes I have just had to walk away from the specific situation. I know that I might be criticized for not being there to support people and I am genuinely sorry for that, but I must also protect myself. I have also had to recognize that I am working within a range of social, medical, and financial constraints. There is always more that I wish I could do for Evie and my family but know that whilst we are now living in our forever home (thankyou Evie for leading this move), there will also be limits on what I and we can do. Such limits also manifest themselves in the fact that I am not a medical expert. I also do not have the wider professional insight into domestic violence or PTSD that comes from working professionally with survivors, which would enable me to draw on past experiences as I tackle new situations with Evie.

So, what do I want to achieve for Evie? Well, the answer is in one sense simple—to be an “uncomplicated” and uncompromising source of support for her. Evie might very well laugh at the idea that I am uncomplicated; I can't tell you the number of times, particularly since my stroke, where my inability to hold things in my head or I muddle up my train of thought has led to tension. It is difficult for me to be uncomplicated whilst I myself am complicated. In order to be in a position to assess my success or otherwise as a carer it is essential that I reflect critically on my motivations, the outcomes I have acheived and the challenges I have faced. It is also essential that I consider what supports I have relied on to fulfil my carer responsibilities. A simple search of any online internet browser would give a carer a range of strategies to reduce their own stress—take some time off; call a friend; find a support network; seek out entertainment experiences; take deep breaths; adopt a fighter's mentality (avoid thinking of yourself as a passive victim); smell the roses; count to 10 etc. These are all useful suggestions but for myself I cannot escape the reality that the only way that I can respond to stress is if I have an emotional or spiritual anchor. For me, my foundation rests in my Christian faith. From my own Christian perspective, I often have to remind myself that just perhaps God placed me on this Earth, in part, to aid someone who I love who is hurting. Why would he do this? Well as with many things that God does, this question often defies my own rationale comprehension. After all, with what I now recognize as my own predisposition toward anxiety from my own childhood; why would I of all people be entrusted with the responsibility to help another person going through trauma? I do not know my own limits, but I know that God does, and I must trust in him.

I want to end by saying first and foremost that I will love you forever Evie. Thank you for supporting this reflection and for putting up with hearing numerous drafts. I know it was triggering for you. Whenever we have talked about life and I tell you that I admire you, you often get uncomfortable. But it is the truth. If I ever try to itemize what you have been through over the years, I cannot escape the fact that any one of your experiences—from being the victim of child sexual abuse; to domestic violence as an adult; to being marginalized from family, friends, and colleagues who often preferred to ignore you and believe the best in her abusers would have been enough to have pushed many others to breaking point. I do admire you for everything you have achieved, and I will be with you forever.

For the academics and others who are reading this paper and who are responsible for progressing the role of carers in society I want to finish with the following observation. Caring is something that is inherently individual on the basis of the experiences it generates—we cannot characterize the definitive carer, it crosses gender, socio-economic and other boundaries. For this reason, there is no one way that we can aim to help carers that will be definitively successful—we have to reach out for help, as much as our own caree must reach out to us. As a society, we should approach caring from the point of view of doulia, the idea that “just as the caregiver has a responsibility for the dependent, the larger society has an obligation to attend to the well-being of the carer” (Kittay, 2019, p. 140). As a carer, we should never feel on our own and subject to the similar stigmas and prejudices as are often felt by those we care for. Take care of us.

You are doing good work. Be proud!