I've looked at life from both sides now

These lyrics, from the song Both Sides Now were written by Joni Mitchell at a time when she was facing major life change; the song as a whole has a recurring meditative theme, reflecting on aspects of her life, and concludes with the statement: ‘...I really don’t know life at all.’ To what extent aspects (sides) of a major life change, such as death, leave us ‘not knowing’ is the central theme of this article.

Death, and the effect of the process of counselling on bereavement, is too big a subject to cover in its totality here; the aim is to identify some of the issues faced by a bereaved couple, and thus some of the issues faced by ourselves as counsellors, both personally and professionally. The invitation to you the reader is to create a space, a caesura (a break in continuity/time) to reflect on which elements connect to or disconnect from your knowledge and understanding of loss and bereavement issues and theories.

The couple whose story is outlined, Tina and Colin, encapsulate the shattering impact of their daughter’s death, and subsequent wide ranging changes in their life. They note feeling totally out of control and thrown into new unknown experiences, feelings and thoughts. Through this, it can be seen how sometimes, rather than owning what we know about ourselves and our thoughts, beliefs and feelings, internal messages and introjects powerfully intervene. In addition, an external ‘locus of evaluation’ is frequently taken, and society often reflects ‘not knowing’ onto death and bereavement – people don’t know how to face the bereaved person or what to say. Tina and Colin note that they needed the time, safety, and space in which to talk and express their feelings. They note how, in her lifetime, they believed that they knew their daughter and their relationship with her, but discovered more posthumously/retrospectively. This ‘not knowing’ can sometimes be experienced by all of us at times when we remember the deceased, such as in conversation, at funerals, or in reading a will.

So how do we as practitioners ‘hold’ a bereaved client in these many aspects of ‘not knowing’? How do we work with bereaved clients? Do we honour the diversity and distinctive differences of bereavement through death; the dynamics of the experience? Are we flexible in our counselling, integrating many thoughts, or do we take one path, follow one way, as some theorists demonstrate? You may find that, by reading on, more questions are raised than answers gained.

'...something's lost but something's gained'

Our own mortality and our losses through the death of others with whom we are in contact and in relationship with are inevitable and normal experiences in life. How far we, as counsellors, accept this existential truth, and the associated feelings and states of being in the face of death – such as being out of control or helpless – can be continually questioned when working with bereaved people. Through our professional and personal perspectives on death we make choices about how we see people’s reactions to death, which can range from normal, exceptional, abnormal, and can even be pathologised.

There may be some central facts and truths about bereavement and loss, but elements of these ‘truths’ will differ from person to person, experience to experience. Personally, having time and space to reflect on this ‘knowledge’ and the similarities and differences between my counselling education, bereavement theories, counselling practice and my own experiences, has revealed to me many different potential realities and truths. This has raised the question in me: can there be any one reality or a single truth or theory which can be applied to all deaths or experiences of death and grief? The invitation here is to provide additional space for you to think and reflect on the similarities and differences between your own client work, theoretical framework/understanding, and personal experience.

My perception, particularly on hearing clients’ experiences, is that death remains taboo. Referring here to White British culture, I find that society and individuals still demonstrate a discomfort with death, as well as the associated outward expression of the emotions of grief. My hope is that this discomfort is not replicated within the counselling/therapy relationship and my invitation to you is to explore your comfort levels as you read.

The outline of the life story of Tina and Colin, below, has been separated into headings for ease of reading. These headings can appear false, as each theme inevitably links to another, but I do not apologise for any confusion about making links between sections – the experience of bereavement and loss can be muddled and confused; as counsellors we need to listen and hear links, and, if appropriate, acknowledge them with our clients and make the connections.

Loss of roles, identity, self

Tina and Colin were participants in a study of counselling experiences of bereaved people1. They were teachers, and had two daughters, Lisa and Anna. Lisa was born with severe disabilities resulting from medical negligence. She died after a medically fragile life at the age of 13. The impact of Lisa’s disability shattered her parents’ lives: Tina became main carer, Colin eventually went back to teaching part time, and so this affected their home life and finances.

After Lisa’s death, they found they yet again had to ‘start anew’ – with no medical teams around them, no appointments, no daily care teams. With Lisa’s absence, their caring roles swiftly disappeared, leaving another massive gap in their lives.

Tina noted how, during Lisa’s lifetime, she was greeted by many with: ‘Oh, hello, you’re Lisa’s mum,’ rather than, ‘Hello Tina’. After Lisa’s death, Tina found people were lost for words, either hesitating or avoiding speaking altogether. This increased feelings of ‘differentness’.

Isolation

Tina said: ‘We were just in no man’s land and didn’t know where we were or even who we were any more.’ This highlights another major impact in that this couple were left feeling disconnected from others, different and even in a subculture, a separate world. The word ‘caesura’ again seems to fit here – a disconnect, a pause.

Feelings, reactions, ways of being

Immediately following Lisa’s death, Tina and Colin described how they felt desperately sad, and angry with the world. They had feelings of concern, fear, and panic. To an extent, they noted how their worst fear had been realised, but having expressed this, they started to become really fearful about the mortality of other members of their family.

They also felt a total void as their caring role had ceased and they needed to redefine themselves; this can bring with it fear and sadness, as well as anger at having to make such huge readjustments.

Feelings and reactions can differ so greatly, depending on the person who has died, their age, the relationship, and the age and stage of the bereaved. It is also true that not everyone feels sad when someone dies – some will be happy and some may feel relieved because a difficult person is no longer there. However, when someone dies, we are reminded that life – our own and others’ – can be fragile and that there is potential for all of us to die ‘out of the blue’, for example, through a road traffic accident or murder.

Anger can be expressed about the events in the life or death of a person, or sometimes towards the person themselves for dying (and thus leaving). Tina and Colin noted: ‘Lisa had been in intensive care for two-and-a-half weeks… it was six months before we found out that she had actually died from the Measles virus. We were so angry. Finally, she was on a ventilator, but there was a time when she knew she had had enough… so we decided to turn it off then.’ The couple received no support through this time, which exacerbated their feelings of anger – and this quickly turned to guilt. They also noted that they felt selfish for allowing themselves to feel so low, and to grieve. Throughout the interview, they realised that they needed to feel and be exactly as they were at that time – ‘selfish’ was a negative introject. They subsequently reframed this to feeling ‘self-ful’ as this is exactly what they needed – to worry only about themselves and their surviving daughter.

Tina and Colin also described their feelings of relief that Lisa was no longer in pain, and also that their exhausting caring roles had ceased. This was just as quickly followed by intense feelings of guilt at feeling this way; their personal introjects did not allow them to experience the feelings of release that her death gave them.

Other clients note their anger with the deceased – feeling abandoned and sometimes rejected. They also note their feelings of helplessness and being out of control. Bereavement often results in such ‘busy-ness’ that forgetfulness, and resulting feelings that they may be ‘going round the twist’, are commonplace.

‘Normal’?

Before Lisa died, Tina and Colin felt ‘normal’ and knew what they were thinking. After her death, they said: ‘It is very difficult because you don’t even know what you are thinking… we didn’t know what was normal or not normal… we felt we’d been turned upside down.’

Their daughter’s death had brought with it such change and loss, with strong reactions and emotions. They held memories of images of her, of her last illness, and treatment at her death, and Tina and Colin wanted to remember her happy and alive.

Remembrance

In conversation with different people involved in Lisa’s care, Tina and Colin learnt aspects of life that had previously been hidden from them. People talked about their relationship with her, and things that had happened. This was mostly positive information for Tina and Colin. However, it is important to hold the thought that bereaved clients can learn different and sometimes difficult aspects about their relationship with the person who has died.

The need to remember the person who has died has been well documented and can involve frequently talking about our ongoing relationship to them2,3. Remembering can be individual but it can also be a ‘collective event’ at funerals and memorials. When we have the opportunity to share memories at these events, we frequently hear laughter alongside tears. But have you, as I have, attended a funeral and wondered whether you really knew the person who had died? Words spoken will be the truths of speakers and not necessarily your own; sometimes positivity about a person can also reflect the societal introject, ‘Don’t speak ill of the dead’. This can cause difficulties for those who need to express other perspectives of the deceased and can complicate grief: the idea that we grieve for the loss of a ‘loved one’ may not be the truth.

Coincidentally I am editing this section at 11am on 11 November 2013. Remembrance Day creates a mass public display of remembering in Britain, and, for some, grief. However, open remembering can be difficult for some; for example, those who have lost people in certain types of deaths, or in certain types of relationships which are less acceptable in society, or hidden. The death of a lover can be unknown, the death of a friend can be overlooked or its impacts minimised, the death in a same sex relationship ignored. Deaths from different causes create different reactions. For example, in suicide, the person may be remembered, but their way of death may not be acknowledged.

Remembering: bringing the past into the present

Tina and Colin found a counsellor who they could relate to. She helped them to talk through Lisa’s death and to also speak more about her life. This included the shattering impact of her birth, feelings of being out of control (in complete parallel to their present feelings), and their anger that the medical world had not been able to help them to alleviate Lisa’s disabilities. In a well established relationship with their counsellor, they explored their own past and concurrent losses: issues with family members, problems with work and finances, issues in their own relationship. Remembering in this way can also help us to find our own existing coping mechanisms.

Relationships: changed and changing

As Lisa needed 24-hour care during her life, Tina and Colin took shifts through the night to look after her. Following her death, the physical separation which had begun then created issues in their marriage. Difficulty with intimacy and sex is often experienced by bereaved people, but is reported to be seldom openly discussed. Communication between Tina and Colin became difficult as they noted their different ways of grieving, and their relationship had to be renegotiated. Tina also noted how other relationships changed; she found herself pulling away from family and friends (especially if they had young children). She said: ‘We have less contact now with family than ever, from choice. I don’t want to see their pain for us (and for Lisa) so it’s easier to stay away.’

As noted in the section above, remembering the person who has died can be a celebration, and mark a continuing relationship with our family and our ancestors, but it can also cause differences, and thus difficulties, in relationships between survivors.

Relationships: remembering and continuing

Many people continue their relationship with the person who has died in lots of different ways.

Tina and Colin described how they kept Lisa in their conversation, had photographs of her around the house, and often talked in the present tense as they spoke to me during the study interview. This was really important to them as a way of coping.

They both described how they felt that Lisa was with them. Tina, in patting her chest and tummy said: ‘…That’s where I feel Lisa is, it’s sort of physical, I breathe her in almost.’ She continued: ‘She (Lisa) loved bubble baths.’ For this reason, it had been impossible for Tina to have a bath since Lisa’s death, and when she finally did, she said: ‘As I was drying myself, I heard her, and I felt her – felt her presence there. I heard her saying, ‘I’ve enjoyed my bath, mum; I’m going now.’ It was like she was going home. It was such a sense of relief that she was actually choosing to go.’ Colin said: ‘That changed you… I came home that day [and you were] just totally different, relieved and relaxed.’ Sense of presence is experienced by 40 per cent of bereaved people and yet my study highlighted that counsellors, for the most part, did not acknowledge the possibility of relationship to the bereaved continuing in this way1.

For many bereaved people, photographs, clothes, bags and other memorabilia hold great significance. Tina and Colin felt that Lisa’s possessions were ‘…giving us the feeling of taking our child with us, keeping her in our lives even though she’s not physically there’.

However, keeping possessions can also create questions and issues. Tina asked: ‘What will we do with her room and all her things? I can’t get rid of anything.’ An answer came from another parent, who told her: ‘Before I removed her nail varnish, I painted each colour onto a card with its name; and I took photos of all the room, so I still have images of how things were, even though they’ve been changed.’

Remembering, then, has many aspects – what we are remembering, how others may change those memories, how we do not always remember the person as they were before illness and before death. Whilst remembering, and as time passes, we can also note fears of forgetting about a person who has died: their appearance, their voice, their smell, their touch.

Impact of societal, individual and family messages

Ideas emanating from society can be noted in Tina’s comment above about Lisa’s belongings. However, this input came from another bereaved parent who could be said to be in the same subculture and therefore had insight into the issues they were both facing. More frequently, Tina and Colin heard: ‘…Oh, they are out and about, laughing and so on, so they must be better, sort of thing.’

Clients frequently note that employers misunderstand the stress associated with bereavement and their need to take time out. Also at times, in not knowing what to say, people avoid speaking, and can avoid meeting, even crossing the road when they see the bereaved person. This can not only add to feelings of isolation and loneliness, but can also create a sense of abnormality, even pathology.

Cliché, metaphor, introject

How often do you hear the phrase that a person ‘passed away’, or ‘kicked the bucket’, both examples of ways in which death is described? Is this because it is difficult to say the words ‘died’, ‘dead’ or ‘death’? These external and internalised messages can act to submerge the reality of death, and can also confuse at times – for example, when a child is unable to sleep following grandma’s death, this can sometimes tie into someone having told them that grandma ‘fell asleep’.

Some verbal responses to emotions are: ‘Time heals’, ‘We pull together in grief’, and ‘Keep a stiff upper lip’. Could we be echoing these messages in counselling? What is your response, for example, when a client apologises for crying? As clinicians, we need to normalise expression of feelings, and even facilitate this, remembering that even offering a tissue can say ‘stop those tears’.

Learning a new language

Where bereavement is concerned, frequently a new language – a new vocabulary – needs to be established. Tina explains her difficulties with describing her family after Lisa’s death: ‘When somebody asks, “Have you got children?”, you think, how many do you say? Do you say one or two?...It’s a real conversation stopper isn’t it really?...I used to say ‘Anna’s 22 and Lisa would have been 25’, and I think that anybody who is sensitive would have picked up on it, and people who didn’t weren’t that interested anyway.’ She added that it took her some time to reach this point.

Counselling ends

Tina and Colin closed their counselling after two years. From the start, they had had no idea how long they would need, and their counsellor reassured them that it could be ongoing. They also said that either a time limit, or speaking to someone who had been in counselling for this long prior to beginning, could have deterred them from starting. On ending, they said that their grief had not ended, and probably never would, but the support they had received had helped them to make changes – from big to minor adjustments – that they needed to help them continue their lives without Lisa.

Counselling bereaved people: the theories

During counselling training, I was taught loss and bereavement through Kubler Ross’s stages, Worden’s tasks, and Bowlby’s attachment theories. Some aspects of these I found comfortable whilst others left me questioning, uncomfortable and sometimes wondering whether I really did know life at all!

This section provides a broad (albeit brief) outline of some of the theories around loss and bereavement, from Freud to the present day. These can be read further if desired, and compared and contrasted to client work above. The study of the theories, and a discussion about their relevance, will be a central element in the forthcoming BACP professional development days I will be facilitating on loss and bereavement in February.

Some theories look at responses, feelings, and/or reactions to bereavement, and then include ideas of how to work with them; others look purely at how counselling is best provided.

1917: Freud4 outlined how, following a significant loss, feelings need to be expressed via ‘grief work’. He described how the emotional energy of the bereaved needed to be withdrawn from the deceased so that they could then detach from their loss, without which he noted the bereaved person would sink into melancholia. This became the first influential theory for counselling following a death. 

1944: Based on Freud’s theories, Lindemann5 outlined stages to be navigated as individuals grieve, focusing on the inevitability of mental ill health if feelings were not expressed and detachment from the deceased achieved.

1969: Bowlby6 studied patterns of attachment, suggesting that attachment and love would result in loss when the object is removed. He outlined a paradigm of loss between the making and breaking of these affectional bonds, and noted the expression of sadness, fear and anger on facing loss.

1970: Ainsworth7 noted that, alongside the psychological responses to bereavement, an understanding of environmental impacts on bereavement was also needed; each element of a system affects another – a systemic approach.

1970: Bowlby and Parkes8 defined four stages in the grieving process:

  • Numbness, shock, and denial – a sense of unreality.
  • Yearning and protest – sadness, crying, anxiety, lack of concentration, guilt, a sense of the deceased’s presence as a protestation against their death.
  • Despair, disorganisation, hopelessness, lowness.
  • Reorganisation – letting go of the person who has died.

1969: Kubler Ross9 applied stage theories to the process of dying, and added ‘bargaining’ after hearing patients say, ‘If only I had…’. She also noted that a dying person may accept death if they are given the opportunity to grieve. These theories are a basis for theories of pre-death or ‘anticipatory’ grief, but are more frequently applied to bereavement following death.

1981: Worden10 reintroduced Freud’s concept of grief work’ when he described four tasks of mourning:

  • Accepting the reality of the loss.
  • Experiencing the pain of grief.
  • Adjusting to the environment without the deceased.
  • Letting go of the deceased/closure (Worden later changed ‘resolution’ of grief to ‘reinvestment in new relationships’).

1996: Attig’s hypothesis11 is that ‘relearning the world’ is necessary after bereavement. He advocates respect for individuality and uniqueness of the experience of grief as an active process of learning how to be and act in a world where loss transforms the fabric of our lives.

1996: Walter2 suggests that, on bereavement, we need to rewrite the biography of the deceased, continuing our story naturally about them and about ourselves in the world without them.

1997/1999: Horowitz et al (1997)12 and Prigerson et al (1999)13 created a diagnosis of ‘complicated grief’ (CG), later renamed as prolonged grief disorder (PGD). This was proposed as a category in DSM-V, but not included. Rando14 also provides a comprehensive clinical text on the treatment of complicated mourning.

1999: Klass, Silverman and Nickman3 discussed how, rather than relinquishing connection, bereaved people continue relationships – continue their bond – with the deceased through memories, dreams and sense of their presence.

1999: Stroebe and Schut15 outlined a dual process model, suggesting that, whilst we need to grieve, we also need diversion and to get back to our ‘normal’ pattern of life. They identified that oscillating between grief and diversion would be normal, but staying on either side of the pendulum may be unhelpful.

2001: Rosenblatt16 also notes how, in stepping into someone’s world, we need to make sure that our ways of working are not embedded in White Western European culture, nor the culture of counselling; we need to be able to step into the world and culture of the other.

2001: Neimeyer17 developed theories around meaning reconstruction as a central tenet of the process of grief. Neimeyer also concurs with the oscillation process and on the need to continue bonds with the deceased.

2002: Riches18 notes the impact of a child’s death on family relationships, particularly how they enter a ‘sub culture’ and experience isolation and loneliness.

2005: Stroebe and Schut19 note that insecure attachment or relationships and a lack of comfort or support can mean that feelings have been hidden, subsumed, not expressed; this can be a factor leading to complications in grief.

2011: Haugh20 notes the person-centred counselling approach (Rogers21) to be most helpful for bereaved people as it is about connection and relationship; acknowledging the incredible pain of loss and helping people to explore why they feel the pain and how they are coping. Added to this, clients note the need for their counsellors to have an understanding of what they may be experiencing, to help them to talk about the death, and to enquire into their culture, faith and belief1.

‘I’ve looked at life that way’ – questions, discussions, conclusions

Tina and Colin’s story demonstrates how the loss of their daughter through death initially led them to stop in time – a sudden caesura – accompanied by intense feelings of shock and helplessness as it impacted on all aspects of their lives. They note their feelings and states of being, isolation and ‘differentness’ and remembering/fearing forgetting; changes in all relationships: as individuals, as a couple, and with their deceased daughter; changes in role/identity; and changes in work and the inevitable impact on income. They note how, when they found a counsellor they could relate to, they gained the space to talk about not only their presenting issues, but also the impact of their past and how to go forward with life without Lisa.

These theories outline the issues which can be faced and provide us with ways of providing counselling. So the question is invited: Where has your learning taken you? What are your ‘knowns’ and what may be ‘unknown’? Where do you place theories in counselling? As a framework to guide you alongside your practice? As explained in the introduction, this article is not sufficient to identify all the issues; as I found, even a 50,000 word book22 is sufficient only as a start in identifying challenges to counsellors working in loss.

I believe that we all have an innate ability to see the breadth of possibilities following a death, including accepting it as an inevitable result of living and being in relationship. However, it is possible that we don’t always grow into this understanding through training alone, and that, through our study of some theories, this understanding could potentially be reduced. From the start of my first placement, alongside personal experiences, I realised that I knew very little of the breadth of this subject. The truth is, I will never know everything. This gives me permission to stay with the possibilities that I know whilst holding an awareness of ‘not knowing’ – everything I don’t and can’t know. This ‘not knowing’ is an element of the provision of ‘space and spaciousness’ which I suggest to be a significant element in effective counselling of bereaved people. In the best scenario, the development of our understanding and knowledge can be fertilised through an appropriate, experiential training programme, and our learning can be further encouraged or discouraged through other introjects – personal, familial, societal or professional – which can be challenged in a robust relationship with a supervisor, and/or, when earlier issues are stimulated, with a therapist.

Tina and Colin knew they needed someone to talk to, and they saw three counsellors before they found the right person, which was then at the right time, in the right setting, with the right approach (a specialist loss and bereavement service). However, when clients see their experience as natural, or are having difficulties but have not previously received psychological support, it can be bewildering, even sometimes pathologising, to be referred for counselling.

I encourage supervisees and trainees to reflect on the impact of referral and the type of therapy offered and whether this has a good enough ‘fit’ with the client’s needs. When we begin our work, how far do we focus our clients on the issue they have presented with and encourage them to express feelings and explore their coping mechanisms? This could be an interesting subject for further exploration: how do we know whether long-term or short-term counselling can affect the process of bereavement? Could long-term counselling make the client feel pathologised? (Imagine being told you will be in counselling for over two years.) Long-term support leaves potential for dependency. Alternatively, short-term counselling frequently has goals and outcome measures; what would these look like when working with bereavement?

Would the goals and measure scores change through the sessions?

Through following our own knowledge and intuition, in addition to full discussion in supervision, we may feel that a client’s grief (from any form of death) has triggered a mental health disorder in them, or stimulated an earlier known mental health disorder, and consider referring them on. However, it is important to note that many of the presenting issues which highlight potential mental illness, as categorised in the DSM-V, can also be seen to be very normal elements of the fluid and dynamic process that we go through when we grieve. We must ensure that we do not refer on inappropriately.

Many issues discussed in this article appear to be raising more questions than answers. Rather than finding all the answers, the article is a response to a process which I see as being diverse, distinct and dynamic:

Diverse

  • Ways of death range from expected through to unexpected, sudden, violent, and not culturally accepted.
  • The place of death and the way it is treated, be it public or private, hospital or hospice, is diverse; each different way of death will receive a different response.
  • Everyone grieves differently according to their relationship to the deceased, their age and stage of life.
  • Societal reactions can include culture, belief, cliché and introject.
  • Death affects all aspects of life – it has a holistic and diverse impact.

Distinct

  • Each person, each relationship, each death, each reaction, is distinctly different.
  • Death has distinct difference: many societies (ie White British) keep death hidden, and outward displays of grief are taboo.
  • Responses may be similar to responses to loss, yet when you learn about the diversity of ways, places, times of death, etc, you will also note distinct differences.

Dynamic

  • Responses to death (grief, mourning) will be displayed through thoughts, beliefs, feelings, behaviours, ways of coping, and physical symptoms in ways which are dynamic, fluid and always uniquely different from another.
  • In response to this, I would suggest that, in parallel, counselling needs to be dynamic and sufficiently flexible to meet the distinctly differing needs of bereaved clients, the diversity of death, and the fluid process of bereavement – not easy but surely energising and creative. 

Through writing this article, it became more apparent to me that, through the ability to provide ‘space and spaciousness’ to ourselves, we can reflect on the multiple and layered impacts of bereavement and loss. This ‘space and spaciousness’ is vital for our clients as they face a significant break – a caesura – and embark on a process of recovering what is real and what may have been illusory about their previous, present, and even future life.

Sally Flatteau Taylor is the founder and chief executive of The Maypole Project which provides psychological support for families facing loss through the chronic illness or disability of a child. Sally is former director of The Bereavement Centre for Bromley, and Chair of the Association of Bereavement Service Coordinators. She is also director of LACES: Loss, Across all Aspects, which provides consultancy, education and support (including counselling for all age groups, and supervision for professionals. 

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