Who cares for carers?
本文通过作者作为家庭暴力幸存者配偶的亲身经历，反思非正式照顾者的挑战与需求，呼吁社会关注照顾者的心理健康和支持体系。
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. You will not make a mistake [when helping a domestic violence survivor]. You will make many mistakes. The nature of hazy situations is that you will not immediately know what is best to do at any given point. 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. Carers are people who provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness, an alcohol, or other drug issue or who are frail aged … Caring may include help and support with any of the daily activities of living of the person being cared for. It may include physical and personal care such as dressing, lifting, showering, toileting, feeding or providing transport. 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 and that she was physically as a is something that no family member would ever want to Evie has me for not protecting her and this is one of the biggest challenges for any how do you protect your family member whilst also listening to the advice of medical professionals saying you are the thing by them be care of by the after Evie out for she did not immediately find the best Her was with a person who in but was to assist someone who was experiencing trauma whilst to down a of her experiences with domestic violence and other in her life Evie has been with PTSD after of As her carer I see some of the of PTSD in Evie. However, I am always what other she is also experiencing by family and it has time to a for Evie and because her PTSD of her life, the effects on me as a carer have up However, when with other issues in our family such as our disorder over the years I have been experiencing levels of stress and It with ideas around against being intimate and long of on negative about my New and such as are particularly can I take in the for the was can I forward with hope for the knowing that are it will be like the and that I will be ultimately by it through that there is between of my family and Evie makes it to and family I am always for people that I see themselves over the but I always given that I am to help issues if they if I reflect on I had a similar to the up of society after the COVID-19 people out with others was for them down I am for at the same time in a way I because was to being like me. in and in of being on I a the of and Evie's to me to a hospital, I know I a I was by people in the people like me who are in their 40s who were a after their here I was able to walk the However, the seem to have given me any physical of it has affected my levels of and the In to me to reflect on my own can I say to Evie and my that after years the medical issues I ever experienced was a has also me to out to medical professionals including and with It has also forced me to the as I to myself family it not have been if the had Such through my whilst in and once I was I was also of being home as the and whilst in their own me a from being a that the was probably by an which in may have been by stress means that no can I the effects of being a carer on my own physical and mental What has been however, is that during my time in and recovery is I being Evie's carer, she a carer for me as This of has to the in (2020) of care, where the person the care to the care being provided. The reflection you have some from my own experience as a While the of this reflection has been to my own mental in Australia where the author there are some 2.65 million people who provide support or care to a or of these people have their own to and thus I am in no way I have this reflection in to protect the thing I would want is for a to her by my to my professional on this to my social to my and to Evie's work and personal While I would never to call out by the people and who have Evie over the decision to do should be made by Evie on them I also feel that I would be value to people who of looking to the I wish to focus on what I might be able to to a over domestic violence in the is a personal reflection and my will not for all with me. In however, I also wish to be because I wish to be as someone who is because of what I have to do to protect Evie. I know it is but what I have is what I would expect to do who was in my is my and I love her. my limited range of I hope that my and the insights that will offer some assistance for other carers. I would also challenge all to to other carers they may know because one of them has a to If I had one that I to the of this paper with is that the that support people experiencing domestic violence are both complex and worthy of to we do from the from being by some to be living in a family which can in cold on the to being and and at For those who this I would you to the stress that such can for and carers. society us can to our ability to with issues that are often all and For I can for over in after work to from after care to go and see Evie in in another of the not knowing if or when she would be from the mental health With family out of the country and with no friends to to I had time to I had of to on the it it was my and Evie who me through but I would be if I say that it was a When an often to put on our own helping those around when it to mental are often the to after their I have had to myself and recognize that it is not in my power to the I have had to walk from the specific I know that I might be for not being there to support people and I am for but I also protect I have also had to recognize that I am a range of social, and There is always more that I wish I could do for Evie and my family but know that whilst we are living in our forever home Evie for leading this there will also be limits on what I and we can Such limits also themselves in the fact that I am not a medical I also do not have the wider professional domestic violence or PTSD that from professionally with which would me to draw on experiences as I situations with Evie. what do I want to for the is in one sense be an and source of support for her. Evie might very well at the idea that I am I you the number of particularly my where my to in my or I up my of has to It is for me to be whilst I myself am In to be in a position to my success or as a carer it is that I reflect on my the I have and the challenges I have It is also that I what I have on to my carer A of any online would a carer a range of to their own some time call a find a support out take a of yourself as a the to are all but for myself I the reality that the only way that I can to stress is if I have an emotional or spiritual For me, my in my From my own I often have to myself that me on this in part, to someone who I love who is would do as with many that this often my own with what I recognize as my own from my own would I of all people be with the responsibility to help another person going through I do not know my own but I know that and I in Care is something that first and from love someone not out of an but because we care for who care also have their own lives of their caree, be it professional or We should not view women or any particular of people in society as being carers professionals et al., 2022). Being a carer should be a of who we are as a it of our that should not only be but also Domestic violence and mental health are of the As long as people have on this some people have it to others. When they do there is a not one that is like a but one that the sense of As carers to support family members who are experiencing mental health they often will experience their own mental health We need as a society to that both carers and domestic violence survivors who experience mental health challenges are to to care for our be there for our and act that like your caree pride in what you are and the good work you are doing. take in the that are in your For if you have focus on what they did at or something It will not make your issues go but it may you a than you might be in when with future in yourself to or which whilst and to people around you may of If such stress them out or them Over the or I have the as it me for this to your family members or your own because on some someone situation is than this not you out for support or feel that you have nothing to say that could help someone be as a carer to out for help for I have been fortunate to have constant from other family they ever this, you know who you are and But if you have that support you should if your work has an assistance not to if your caree that a medical practitioner is not for This not that they are not of but it rather could simply be that the person is not going to help in the way they a family carer we need to to our caree and remember that no what we might be we will only be successful if our caree with people from the medical establishment that they can remember that no how long we care for someone and no how their situation people who have experienced domestic violence and PTSD are They can have the to their carer that some of the their carer is for in my that I to are that their carer help. in however, that when they take on the role of a they need the same love and support as their own carer when they are I want to by saying first and that I will love you forever Evie. you for this reflection and for up with I know it was triggering for we have about life and I you that I admire you often But it is the If I ever to what you have been through over the years, I the fact that any one of your being the victim of child sexual to domestic violence as an to being from family, and who often to ignore you and believe the best in her would have been to have many others to point. I do admire you for everything you have and I will be with you For the and others who are reading this paper and who are responsible for the role of carers in society I want to finish with the Caring is something that is individual on the basis of the experiences it the carer, it and other For this there is no one way that we can to help carers that will be have to out for as as our own caree out to As a we should caring from the of view of the idea that as the has a responsibility for the the society has an to to the of the p. As a carer, we should never feel on our own and to the similar and as are often by those we care for. care of You are than you You are good is not to this as no data were or in this