Bereavement, in all its manifestations and lived experiences, has been the focus of several published research, clinical works and interventions. However, it could also be suggested that there are significant gaps in knowledge around specific issues and population groups (Thorp et al, 2018; National Bereavement Alliance, 2020). Such gaps in knowledge could have a detrimental effect on both the delivery and perception of the support services of these population groups. Bereavement and its effects on men, and its effects on those who have an autism spectrum condition or who identify themselves as autistic, are of special interest to the author of this article. The author is an autistic male in his early 60s, whose wife died of multiple and long-standing health and disability issues in January 2021 after nearly 30 years of marriage. This article hopes to initiate a reflective debate around anticipatory grief (AG) and grieving, as well as the current and future support provided by community nurses for autistic adults who are journeying through these experiences. The intention of this article is to help improve the support provided by community nurses to autistic individuals.
Method
A broadly autoethnographic approach was adopted in conceptualising and writing this article. The language used is intentionally ‘informal’, as a letter composed in a more academic style and language would appear stilted and might not be as effective in conveying often raw emotions, sentiments, and experiences. Autoethnography can be seen as the connection between the author's experiences, their story and the bigger picture being researched and analysed (UK Government, 2020).
Many of the sources cited within this article, such as the web-based sources, could be defined as ‘grey literature’ (Coad et al, 2006). Grey literature can be viewed as the manifold document types produced on all levels of government, academia, business and industry in print and electronic formats. These documents are protected by intellectual property rights and are of sufficient quality to be collected and preserved by library holdings or institutional repositories. However, they are not controlled by commercial publishers, for example, where publishing is not the primary activity of the producing body. Although peer-reviewed papers published in major scholarly journals may be seen as the ‘gold standard’ in terms of literature, this is true only to an extent, as grey literature often gives access to studies by those on the margins of society, while high impact journals may not.
While a ‘letter’ from the author that explores the highly personal perspective and lived experience of bereavement will form the basis of much of this article, it could also be read and engaged with as a deeply personal letter to community nurses. The strengths of using an autoethnographic approach supported by the use of grey literature is that it democratises communication and the means of such communication. However, the weakness of this approach is that it is highly subjective-it is one person's story, one person's truth and may not be shared by other people in similar circumstances. Therefore, the thoughts of the author may not be generalised across a wider population in similar circumstances. As such, it is plausible that these deeply personal experiences may not reflect those of other autistic men. There may also be a lack of empirical research and evidence to support the position and story of the author. Nonetheless, it is his story and he has the responsibility and perhaps even the right to explore and express it.
The letter expresses one side of the equation-that of the author's—while the experiences and position of the community nursing team are absent. This may be seen as counter-democratic but may also provide a valuable area for further research into the experiences of autistic care givers within the context of AG.
What is bereavement?
As with many other issues, such as religion and sexuality, dying, death and bereavement are rarely talked about in public; when they are, they are often couched in terms of fear, pity or humour, which may be misguided (Logan, 2016). Dying, death and bereavement are personal issues and experiences that all people have to acknowledge and face at some point in their lives, with the death of parents, grandparents, siblings or children. In order to explore the author's lived experiences of bereavement, a working definition of bereavement is needed: what is bereavement? Are there different forms? How does it manifest itself?
Bereavement could be seen as a process by which one person mourns or grieves for the loss, usually through death, of another person and which can sometimes begin before the actual death (AG) (Daly, 2017; Taee, 2020), and which can last for many years. It is not unusual for one's first experience of bereavement to be either through the death of a family pet, the death of a grandparent or great grandparent or through observing one's parents or older siblings journeying through dying, death and bereavement. That is not to say, however, that such experiences of bereavement are any less real and long-lasting than any other. It is interesting to note that bereavement is the journey undertaken by one person, and it is likely that the specific experiences of such a journey will be unique to each person. Bereavement, as experienced by the author of this article, will be different from that experienced by his 30-year-old son or from the deceased's wider family or circle of friends.
However, bereavement may not necessarily be connected with the physical death of a person. It is not unusual for new parents who are told that their unborn child will have a disability, to mourn or grieve for the child that they will now not have (Bliss, n.d.). The parents may mourn for the hopes, dreams and aspirations they had for the child, which may now not be fulfilled or have drastically changed or even disappeared due to a life-limiting health condition. The bereaved are likely to experience many of the bereavement stages highlighted below (Brown, 2013; Cheshire and Wirral Partnership, 2018) and may need understanding and extra practical, emotional and psychological support to come to terms with the diagnosis and its implications. Stages of bereavement or grief are likely to include:
- Shock or disbelief
- Denial of the death or its effects on the person grieving
- Anger at the loss of the person, either through death or through the diagnosis of a disability
- Bargaining
- Depression
- Growing awareness, finally leading to
- Acceptance and hope (Kubler-Ross and Kessler, 2014).
Parkes and Prigerson (2010) suggested two further additions: searching (either where the bereaved may have a sense of the dead person still being with them or searching for meaning) and gaining a new identity (taking on roles previously carried out by the dead person in practical matters or taking on their personal mannerisms, characteristics and interests). It could further be suggested that the acquiring of a brand-new post-death identity and purpose, which looks to the future with hope rather than reliving the past with a mixture of sadness and happiness, could be added here.
It is quite common for some of the bereavement stages to be missed out or, conversely, to be revisited several times during the bereavement process. Again, bereavement does not come neatly packaged and with a time-limit. It may take many years for the person journeying through bereavement to ‘come out the other side’. An example of this could be the bereavement caused by a pregnancy miscarriage still affecting a parent's thoughts, memories and emotions many years, or even decades after the miscarriage.
Although grieving is mainly defined in terms of post-loss mourning (for more information, see: www.mind.org.uk/information-support/guides-to-support-and-services/bereavement/experiences-of-grief/), another type of grief and grieving might be experienced over a long period before the death of a loved one. Daly (2017) and Taee (2020) suggested the idea of AG, which is the period between the diagnosis of a fatal disease or significant decline in health of a loved one, and their inevitable death, and it is usually full of grief, anxiety, uncertainty, and fear. Conversely, this period may be greeted with relief by some, as their own observations of their loved ones are confirmed and validated and their own thoughts about mortality and the need for future planning are brought more sharply into focus (Cruse, 2021a). AG is the kind of grief experienced by a dying person and their loved ones before death occurs and is similar to post-death grief (Simon, 2008; Holley and Mast, 2009; Dementia UK, 2021). The actual processes and stages of bereavement, both before and after death, are likely to be similar (compare Kubler-Ross and Kessler (2014) with Cruse (2021a)). The realisation that the declining of physical health is likely to result in the person's death may come as both a shock and a relief to the person concerned and to their family and friends (Cruse, 2021a; Hospice UK, 2022). The person's impending death may not have been anticipated, which may cause shock and disbelief; on the other hand, if the impending death had been anticipated through observing the loved one's declining health, a sense of relief may be experienced (Cruse, 2021a).
A conflict or dissonance arises during the period of AG and grieving where the person who is approaching death knows that they are dying and that their family and friends are also aware of their impending death. The person is still very much alive and this life needs to be recognised, accepted, validated, celebrated and lived to the best of the person's ability and wishes. For some, but by no means all, this period of AG and grieving could provide opportunities for funeral arrangements to be made, ‘bucket lists’ to be compiled and actioned, family rifts to be healed, time to be spent with the person who is dying and post-death futures to be planned (Cruse, 2021b). For others, this time of AG can be a ‘living hell’, with family rifts and anger among a whole host of emotions and unresolved family dynamics and issues coming to the surface. The sensory dissonance of seeing, hearing and engaging with the dying person day in and day out, while expecting the inevitable can be extremely stressful (Hospice UK, 2022). Yet, that person is still alive and needs to have their life recognised, accepted and validated; the person who is dying will still have needs, which have to be met. Such needs will include human company, mental stimulation, appropriate diet and warmth (physical, psychological, emotional and spiritual). They also require engagement with the wider society, even if such engagement means visiting the local supermarket or engagement within their faith communities, among other things. Significant support is likely to be needed by both the dying person and their family and friends during this time. The following section seeks to explore this process and the experience of certain aspects of AG from the perspective of the author, who was his wife's full-time care giver for many years.
Personal experiences of anticipatory grief
Personal experiences of AG and grieving will be different and largely unique to each person who journeys through it (National Autistic Society (NAS), 2022). The experiences of bereavement-both anticipatory and post-death—as experienced by the writer of this article will be different from that of his son, although there may be commonalities. As stated in the introduction, the author (Chris) is an autistic 63-year-old male. and the community nursing team who worked with him and his wife were aware of his autism, his neurodiversity. These are his experiences with AG and grieving, shared in the form of a letter. While much of this letter may not be supported by citations and references to published research, this should not detract from the legitimacies of the issues that the author seeks to raise.
Dear friends, colleagues and nurses,
I have thought long and hard about writing and sharing this letter to and with you. While pondering about how to begin this letter, it has caused me to stop and think: do I address you as friends, as colleagues, as nurses or as all three?
To start at the beginning, I am a 62-year-old registered nurse who is also proudly autistic, having been diagnosed with autism in late 2008 at the age of 49. My late wife, whom I shall call Liz (not her real name) died in January 2021 at the age of 63, just 4 weeks before our 30th wedding anniversary. Liz died after a lifetime of disability, experienced both in her own body (she lived with multiple health and disability issues) and in the bodies of others (I met Liz in the 1980s when I was training to be a nurse and she was a healthcare assistant-we went on to have an autistic son). Throughout her life, Liz welcomed into our home and cared for many people with disabilities and/or mental health issues.
From the autumn of 2015 until her death, Liz was a ‘frequent visitor’ to a number of hospital wards as a patient. When it became clear from the end of 2019 that her health was deteriorating, that the impact of her various disabilities were increasing and that Liz was living on borrowed time, the whole of 2020 was spent preparing ourselves for her inevitable decline and eventual death. This letter is perhaps one way in which I can make sense of the 14 months between her last hospital stay in November 2019 until her death in January 2021, most of which was lived out against the socio-political and economic back-drop of the COVID-19 pandemic. In order to do this, it may be useful to briefly highlight a number of issues.
As already mentioned, I was diagnosed with autism in late 2008 at the age of 49. Here, I encourage you to ignore the negative or stereotypical aspects of autism. However, you may find Wing (2012) and Barber (2011) useful as background information regarding autism spectrum conditions and how they may affect individuals. The core of autism is not a disordered emptiness, a strange aloofness, a lack of empathy towards others or just repetitive behaviour and communication and a craving for routine and sameness. It is a unique way of being, of thinking and feeling, of relating and reacting to and engaging with the world. Indeed, Yoshida (2008) sees autism in terms of advantages and challenges as well as disadvantages. To paraphrase Winter (2012), ‘My life is definitely, definitely not empty, and I am not empty, soulless, unfeeling, devoid of all the things that make a person “human.” I live, I laugh, I cry, I love, I give, I care, I bleed’. My autism involves a different, but not an inferior, worse or invalid way of engaging with the world and the people in it. I am ‘dif-abled’ (differently abled) rather than ‘dis-abled’. Although Yoshida (2008) and Winter (2012) may seem to be out of date in terms of ideas around autism self-advocacy, more contemporary sources such as the Autistic Self Advocacy Network (https://autisticadvocacy.org/self-advocacy/) and Purkis (2022) may be useful for those interested and engaged in self-advocacy groups.
In some ways, my grieving-anticipatory and after Liz's death, has followed a similar pattern to that experienced by many other people in similar situations: shock, anger, depression and acceptance. I never denied the fact that Liz's death was inevitable, given her health and disability issues. In some ways, it was not her death that was the problem, but seeing Liz die slowly in front of me and the powerlessness of knowing that there was very little, if anything, that I could do to prevent it, that was difficult for me to accept and process. As both a registered nurse and a person, I was perhaps ill-prepared for this aspect of grieving, and being autistic did not, and does not prevent me from experiencing and expressing emotions (NAS, 2022). Again, there is a largely unwritten and covert expectation that, as a man, I should be able to develop a stiff upper lip and not let any emotions affect me (Mind, 2022). Even today, there is the expectation placed upon many men to become almost ‘superhuman’ in how they relate to, experience and express emotions such as grief and grieving (Bupa, 2022; Mental Health Foundation, 2022; Mind, 2022). Such an expectation could fit neatly within the so-called lack of autistic empathy, but one that, if left unchallenged, could lead to the development of mental health issues in some men (Bupa, 2022; Mental Health Foundation, 2022; Mind, 2022).
In relation to autism, there is a growing body of research and resources available that focuses on the grieving process and those on the autism spectrum, some of which are largely targeted at children (Autism West Midlands, 2020; Autism Speaks, 2021), with some aimed at adults (NAS, 2022). Again, some of these resources are in the form of blogs or online articles, such as Fisher (2012), Graham (2019) and Bennie (2021). All of these resources present the ‘accepted way’ of grieving, while suggesting that those such as myself will experience and express their grieving in ways that are unique to those on the autism spectrum, that are ‘non-standard’ (whatever that means). However, all of these resources view grief and grieving as occurring after and not before a person has died.
How, then, did AG affect me? Watching my wife Liz slowly die in front of me had a profound impact upon my life, even more so as I was spending most of my waking days and all of my nights with her, often holding her hands, trying to comfort her, often silently crying when I felt that I had failed her. I tried to express that grief through acts of love and compassion towards Liz, almost as acts of vigil by her side. I would often go to sleep at night wondering whether Liz would still be alive when I woke up the following morning, and, when I did wake up, one of the first things I did was to see if Liz was still breathing. Stop for a moment and re-read those last three sentences and think how they could impact you as a person if it was you caring for a loved one.
However, the time that was left to us afforded us some opportunities to hold each other in love. It gave both Liz and myself the opportunity to say to each other: ‘I forgive you, please forgive me’, ‘Thank you’, ‘I love you’ and finally ‘Goodbye’(Gaventa, 2010). If the last human sense to cease functioning is hearing, the final words that Liz would have heard me say before she died were‘I love you’.
Liz developed lymphoedema in both legs, and I took on the job of debriding, cleaning and dressing those legs as and when it was needed. Often, I failed, not only in dressing her legs in a spirit of care, love and total attention, but in innumerable ways and became impatient with both Liz and myself. I contacted the community nursing team for advice and support regarding not only the ‘mechanics’ of dressing Liz's legs, but also the anatomy and physiology of lymphoedema and best practice models and principles in terms of wound management. I wanted to ensure I had sufficient dressings and the right techniques, but I felt largely ignored. This, in turn, fed into my feelings of hopelessness and failure towards Liz as I felt that I had failed to act as her advocate, that I had, in some sense, betrayed her. This sense of failure towards Liz exacerbated the AG and, on occasion, surfaced and expressed itself as a loss of patience and temper towards the community nurses when they did visit us. Again, many of us who are autistic may appear to have a two-dimensional view and relationship with the world and the way we see it. We may see people and their actions in either black or white, right or wrong, just or unjust, with few or no shades of grey’ (Weldon, 2021). Many autistic individuals have what could be described as a ‘heightened sense of justice’ and tend to act against perceived injustices (Weldon, 2021). Some community nurses did not see my perceived ‘behaviour’ towards themselves and their colleagues as born out of an AG, frustration, a sense of justice and a desire to ensure that Liz received the professional care and support that she needed. They did not see that I needed and expected support. Some, but by no means all, of the community nurses viewed and interpreted my attitudes and behaviour towards them as being verbally ‘aggressive’ and reacted accordingly. The community nurses completely failed to recognise the impact of autism during this difficult time, how AG manifested in my life, and how it impacted the lives of me and my son. What I needed was compassion and the opportunity to talk, to share my experiences, to be listened to, to be understood, to be validated, to be cared for and to have a shoulder to cry on. I needed the community nurses to sit with me, to listen, to understand and to ‘walk a mile in my shoes. What I received was criticism, judgement, neglect and ignorance.
It has been a little over a year and a half since my wife died, and hence these reflections are very much engaged in retrospectively. Therefore, the recollections have either faded with time or, conversely, become sharper in their retelling and reliving. Either way, it is often thought that time heals all wounds and that the pain of loss will gradually diminish with time. While that may be so, the pain of anticipatory and post-death loss and how that loss was engaged with on the part of some community nurses will remain with me for many years and decades to come. My greatest challenge is to learn to forgive, to ask for forgiveness and to offer genuine forgiveness and compassion to both myself and the community nurses who have caused me such pain. On a more positive note, Liz is now at peace, and perhaps a fitting tribute, a fitting way to celebrate all that Liz was, all that she represented, all that she stood for, all that she did and all that she achieved in life is to open up my heart, my home and my life to those in any kind of need. That was and is Liz's legacy, and it would be fitting to transform grief and grieving, both of which are natural emotions and experiences, into a life of active and compassionate service to and for others.
Yours, Chris.
Findings and discussion
The centre of this article is a deeply personal, broadly ethnographic letter from the author to community nurses, and that this letter represents the experiences and views of one person who is autistic. This was not intended to be a piece of research that could be generalised across similar groups of people (autistic men who experience AG and grieving), and this could be viewed as a major weakness of this article. However, it is possible that the contents and the intentions of the letter will resonate with a small number of autistic men who find themselves in similar circumstances. There is a dearth of published research that focuses on the experiences of autistic men facing and journeying through AG and grieving. Consequently, there may be a need to carry out extensive research into the lives of this demographic, as they experience AG and grieving. This may improve the standards of support services being offered by community nurses and experienced by autistic caregivers. It must also be kept in mind that the quality of the community nursing support and services being offered is not the same as that perceived and experienced by the autistic caregiver. The community nurse may believe that they are offering a poor service, but the caregiver may have nothing but praise for the community nurse and vice versa. There is a need for communication between the service user and the community nursing team, such that an equilibrium can be achieved in the delivery and reception of the support service.
Liz's health started to drastically deteriorate in 2020, the first year of the COVID-19 pandemic, and Liz and Chris realised her death was inevitable; community nursing teams struggled to maintain and provide both the quality and the quantity of care and support services that the service users would have liked. Such a struggle may have been predicated on the grounds of the reduced availability of resources and nursing and care staff. It is likely that as a result, tempers on both sides would have become somewhat frayed. The patient and her husband may have felt neglected by the community nursing team, as phone calls were not responded to appropriately, visits became fewer and the right dressings were not delivered on time. The community nursing team may have felt that Liz and Chris were being unnecessarily antagonistic and demanding and may have even felt threatened by this perceived antagonism. There was a need for some form of neutral arbitration that would have set out the expectations of both sides-what services were required and what could be delivered given the context of the COVID-19 pandemic and the financial cost of providing such a service and support? The results of such an arbitration would have been realistic, deliverable, acceptable and binding on both sides. Another major aspect would have been to have an understanding of the affects caused by AG and grieving on the patient and caregiver.
Implications for nursing practice and research
‘What I needed from the community nurses was compassion, for them to sit with me, to listen, to understand and to validate me. What I received was criticism, judgement, neglect and ignorance’. While the above letter may be viewed as an example of sentimental and even morbid hyperbole, it is worth repeating these few words, as they feed into the sense of hopelessness experienced throughout the anticipatory grieving process.
What, then, can community nurses learn from this and put into practice in their work? What could have been done differently? What support could community nurses have offered the author that would have made a positive difference?
One possible starting point would be for community nurses, individually and as teams, to actively engage and participate in professional development opportunities that focus on AG and grieving and the impact that such grief and grieving can likely have on those who experience it. It may well be that AG and grieving is included in many existing professional development resources that focus on grief management, and it will be worth including AG into existing learning resources where this is not discussed. However, it is essential that those who have experienced AG contribute to the formation of such learning resources. This could be achieved by asking those who have experienced AG to participate in focus groups. The groups could then incorporate the outcomes of their sessions into learning resources, or people with personal experiences of AG could be asked to present at training sessions and conferences. Some of the best training sessions and conferences on, for example, both learning disabilities and autism that the author has participated in over the years have included the service user voice as presenters and co-trainers. The inclusion of the ‘service user/patient voice’ within this current context will depend on how well community nurses and community nursing teams know their service users. However, in the experience of the author, those who have personal experiences of AG and grieving will be more than happy to be approached, asked and included in the provision of learning resources, such as learning and professional development sessions and conferences. It may also be useful for community nurses to signpost the patient's family members to external support services, such as the Samaritans, Cruse, local informal carers groups and, where necessary, mental health support services.
Given that community nurses must never place themselves in danger by becoming the target of aggressive behaviour from service users or patients and their families, it is crucial that they try and look beyond the presenting behaviour, to the often raw emotions, the pain, the sadness, the loneliness, the isolation and the experiences that lie behind such behaviour. While what Chris needed was a sense of understanding, empathy and compassion, what he received was incomprehension, criticism, opprobrium and a total lack of willingness and ability to engage with the situation he was in. AG is as real and painful a form of grief as that experienced post-death, and the community nurse has a responsibility to understand and offer compassionate nursing care to all family members who need it. However, as such grief will affect each person differently, care must never be provided on a one-size-fits-all basis, and this is particularly true when the ‘informal caregiver’ is autistic.
It would be useful for community nurses to incorporate the care and support of family members in their remit. At the end of each home visit, the community nurse should make time to sit with the family after working with the patient, allowing the family members to share any experiences, sadness, joys, anxieties or worries that they may have. It may also be useful for in-depth research to be carried out on the experiences of those who, like the author, are autistic and who struggle with the realities of both anticipatory and post-death grief and grieving, with a view of creating support resources for both community nurses and autisitic individuals.
Conclusion
Dying, death and bereavement are personal issues, and no two people will experience, live through and express such bereavement in exactly the same way. There will always be subtle differences and nuances, and that is equally true for those who are autistic-and those who are neurodiverse more generally. The manner in which community nurses approach and work with those who are journeying through such bereavement can either be constructive, supportive and life-affirming or harmful and even destructive with long-term effects, positive and negative, being felt long after the person has died and the community nursing team have moved on. Community nurses and their teams have only one chance to get it right, there being no re-runs. Nurses should have the courage to recognise a need and respond to it with care and compassion.
Key points
- Dying, death and bereavement are personal issues and experiences that, at some point in peoples' lives, they will all have to acknowledge and face
- Bereavement could be seen as a process or journey by which one person mourns or grieves for the loss, usually through death, of another person and which can begin sometimes before the actual death (anticipatory grief)
- Anticipatory grief is the period between the diagnosis of a fatal disease or where health is declining significantly and the inevitable death of the person, and it is usually a combination of grief, anxiety, uncertainty, fear and even joy
- The experiences of autistic grieving, both anticipatory and after death, are likely to follow a similar pattern to those experienced by many other people in similar situations: shock, anger, depression and acceptance, but there are likely to be subtle and nuanced differences
- Participation in a range of professional development opportunities regarding anticipatory grief and autism are likely to be key to providing appropriate care and support to those on the autism spectrum who are experiencing such grief