Galactic Gulfs

This was a phrase I read in a Sydney paper to describe one man’s experience of describing his grief following the death of his wife.

Such an interpersonal gulf also applies to many of you as you re-enter your various worlds following the death of your child.

I would argue that is is probably true for families attempting to explain a cancer diagnosis and the treatment experience to their wider world.

In my conversations with palliative and bereaved families, one of the issues that surface frequently is how difficult it can sometimes be to adequately communicate what it is like to be a grieving parent to others.  This is equally true for surviving siblings.

Grief is, for many an overwhelmingly gut-wrenching experience at times…a bit like a being swamped by an emotional tsunami.  When as humans we experience such heartache, we need that heartache to be heard and understood…or at the very least tolerated for what it is.  What we don’t need is silence, irritation, discomfit or mindless platitudes.

Many of you will find yourselves in the position of trying to communicate to extended family or friends what it is like to be heartbroken and to be faced with the challenges of rebuilding our lives.

I was reminded of a piece sent to me a while ago from a mother who had had this type of experience and what she met was advice that she “not do this to her self”, that she should “get on with her life” and to “focus on the surviving children”.

Needless to say, this was not helpful at the time and only served to add to her already existing distress by making her feel even lonelier and more cut off from the rest of the world.  That sense of being ‘different’, of feeling disconnected from the ease of mutual understanding and communication is an experience that many can identify with.

In her distress, she spent time on the internet, exploring some grief websites and found the following lines which gave her comfort at that time.  She thought it might strike the right chord with others and so suggested that it be included.  I know many will resonate with the words.

  • Please don’t ask me if I am over it yet.
  • I will never get over it.
  • Please don’t tell me she (he) is in a better place.
  • She’s (he’s) not here with me.
  • Please don’t say she (he) isn’t suffering any more.
  • I haven’t come to terms with why she (he) had to suffer at all.
  • Please don’t tell me how you feel.
  • Unless you have lost a child the same way.
  • Please don’t ask me if I feel better.
  • Bereavement isn’t a condition that clears up.
  • Please don’t tell me at least you had her (him) for so many years.
  • What year would you like your loved one to die.
  • Please don’t tell me God never gives more than we can bear.
  • Please just say you are sorry.
  • Please just say you remember my loved one if you do.
  • Please mention my loved one’s name.
  • Please be patient with me when I am sad.
  • Please just let me cry.

Many of us could add many more to the list of do’s and don’ts.

These words, I think, illustrate three very important features of bereavement.

First, that it is not something that people recover from.

Grieving for someone we love ends when we too finally die.

It is a sorrow that is carried as part of oneself, a sorrow that underscores the fragility and preciousness of life and frequently influences in a myriad of ways, the way bereaved people continue into their tomorrows.

It is a process of becoming more familiar with a world that is profoundly changed and moving to a place where, hopefully, the heartache is carried more easily and in a way that permits enjoyment of life again.

Secondly, it describes the fact that while people die…our relationship with them does not.  Children who have died continue to be a part of you and to be part of your lives and remain, someone that you will want to talk about, whose story you will continue to want to share with others.

And thirdly, that communication with the broader social world in which you live can be very challenging at times (the galactic gulf), that language can be limited and that the receptivity and capacity to appropriately respond to another’s pain varies greatly.

Bridging the divide between the world that was and the world that will be, requires the bereaved to re-enter their social worlds – reconnecting with family and friends, developing new relationships perhaps, sometimes distancing or severing some social connections.

Supportive social networks are important to us all.  They are associated with positive mental health and a capacity to manage life crises.  Social support has been defined as feedback from others that one is loved and cared for, esteemed and valued and part of a network of satisfying communications.  Basically, we cope more effectively if we find the social support we need.

For bereaved parents, this will require amongst other things, being able to truthfully acknowledge thoughts and feelings , opportunities to have their changed selves acknowledged and accepted and the freedom to speak freely about ALL their children, both living and deceased.

The death of a child is an unusual event in the society in which we now live and communities are not always familiar with how to respond to the bereaved.

The culture of response tends still to lean towards notions of recovery and closure and a return to normal.  Nothing could be further from the truth, as is so beautifully expressed above.

Bridging the gulf may be difficult but necessary as you re-enter your social worlds, reweaving the web of your daily lives and reestablishing interdependent connections.  This can be comforting and reassuring as it may relieve the isolation of grief…but as observed in the poem, we cannot predict the responses of others and their responses are not within our control and can add to distress.

However, as humans,  we jointly weave our social webs.  By challenging or simply not accepting the platitudes or misguided utterances and providing cues as to “how it really is” we play a role in improving conversations and interactions about love and loss and life after.

blue and purple silk rose flower on pink surface
Photo by Marta Branco on Pexels.com

 

with thanks to Vera Russell Palliative Care/Bereavement Counsellor, a treasured colleague and friend.

 

When a sibling dies

rear view of a boy sitting on grassland
It has been said that “death ends a life, it does not end a relationship.

This statement is perhaps especially true when a sibling dies in childhood, adolescence or early adulthood.  An untimely death whose ripple effects may continue long after the farewell at the funeral or graveside.

Sibling relationships have attributes in common with all interpersonal relationships.  They also have specific unique features that reflect a special bond.

It has been suggested that siblings are likely to spend more of their lifespans with each other than with any other family member.

Siblings may use each other as significant influences, ‘benchmarks’ in the development of self- identity and understanding of the world.  Siblings play a crucial role in the development of identity.  Their relationships help define one another.

Consequently when a sibling dies, the surviving child or adolescent loses many things…a playmate, a confidante, a role model, and a friend…even someone to argue with and someone with whom they can  ‘gang up’ against parents.

Perhaps someone to grow old with, look after aging parents together.  They lose a shared history and future, a feeling of connectedness and shared activities.

The identity of siblings is frequently so intricately connected with the death of a sibling it may feel like the death of a part of themselves.  The grief of young people may at times be minimised, overlooked or misinterpreted.

The familiar pattern of their lives as for adults is forever changed.  They may feel inexpressively lonely and lost.  They may also feel regret and guilt, as adults sometimes do, wishing they had done things differently.

Life views may be challenged, e.g. that only old people die, that adults can always make things better and keep everyone safe.  It can be very unsettling for young folk and they, like adults, need time and help to relearn their new world.

How each child or adolescent responds to the death of a sibling will be influenced by a range of factors, including their age, their gender, previous experience of loss, the reactions of adults around them, individual personality, the nature of the death and the nature of the relationship they experienced with the child who has died.

It is difficult, in the early months, to feel connected to someone who is no longer physically present.  There may be for older children and adolescents, an expressed fear of ‘forgetting’.  The permanence of a ‘heart connection’ seems less than a physical presence, a person that can be touched and loved, played with and kissed.  Children and adolescents, like adults, may like to surround themselves with photos or mementos to trigger and reinforce the strength of memories.

“Eventually and gradually, there is a growing knowledge that those who have died are, always have been, and always will be a part of who we are, that no-one can take from us what we carry within.” (Dianne McKissock)

In years past, it was thought that we need to ‘leave things/people behind’, and ‘get on with our lives’.  Nothing could be further from the natural inclinations of most bereaved people, for whom ‘leaving behind’ is a most painful concept.

Current understandings about grief and the task of readjusting to a world forever changed, place more emphasis on the natural human tendency to want to stay connected in some way, to take those who have died with us into our tomorrows, albeit in a different way.

It is now more widely accepted that maintaining an ongoing connection and relationship with the person who is died is often an integral part of a healthy and successful readjustment.

For years following the death, many siblings may report that they continue to actively miss their deceased brother or sister and often experience renewed and intense grief on occasions that would be considered significant in their lives together (e.g. graduation, births, weddings, retirement, special birthdays).  Surviving siblings continually renegotiate their ‘relationship’ with their deceased sibling as they navigate successive developmental and life stages.

The whole family is heartbroken and disrupted by the death of a child.  The family, as individuals and as a unit, must restructure and readjust.  How parents model managing their grief will influence how surviving children manage.

Open communication, a sense of togetherness and parental support is crucial as is the help received from extended family and friends.

The impact of a child’s death is pervasive.  As with adults, not all children and adolescents react in the same way.

Some points to consider:

  • Children are less likely to be able to describe their emotions and/or reactions.  They show their hurt in other ways, e.g. crying, withdrawing, seeking attention, misbehaving, complaining of aches and pains, picking fights, arguing, having nightmares.
  • Age and development significantly influence a young person’s ability to understand death.  Adults with all their life experience and complete development will frequently feel overwhelmed by the enormity and finality of death.  It, therefore, can become puzzling and confusing for children.
  • A sense of normalcy is lost.  Bereaved children may feel very different from their peers:  the family may feel different.
  • At times children may feel that the child who has died was the preferred or favourite child, mainly as they observe parents become preoccupied or all consumed by their grief.
  • Sometimes the child who dies is idealised, their admirable qualities emphasised and surviving siblings may feel inadequate in comparison.
  • Often the rest of the world asks how the parents are doing, not recognising or validating the grief of surviving children.  Siblings work through their pain in bits and pieces.  Play, school and continuing normal activities are powerful tools that help children and adolescents manage by moderating their grief, allowing them a chance ‘to be normal’.
  • Children and adolescents will reprocess the death and its impact over time as they mature and develop.
  • Some siblings are not verbal in expressing their thoughts and feelings.  They may choose not to talk much about their sibling who has died.  Sometimes, protectively, they may choose not to talk to parents and may turn to others instead.
  • Life for adults, ‘sibling’ memories may be triggered by places, objects and songs.  It is important to prepare siblings for these experiences and let them know this is normal.  It may even be useful to share your own parental triggers.
  • Many children report thinking about their sibling at special family times.  It may be helpful to anticipate this beforehand and talk about these important life events and the absence everyone feels.
  • Children may be encouraged to carry their sibling’s photograph or other small link that brings a touch of comfort.
  • Many children continue to talk to their sibling quietly internally.
  • Some prefer to start journals.

There are no right or wrong, “set’ ways to foster a sense of connectedness.  Rather an atmosphere of tolerance, encouragement and open communication are most likely to enable bereaved siblings to find personal and special ways to stay connected to their brother or sisters.

It is important to note that as this is a process that changes and evolves over a lifetime as do the needs of the grieving child.

A child who dies remains an integral part of an individual’s and a family’s past and present.  The bond in future will of course be different with change and the challenge for survivors is how to be and act in a world without those we love by our side in the physical.

grayscale photo of baby feet with father and mother hands in heart signs
Thanks to my good friend and colleague Vera Russell.

Grief……What is it?

I met recently with an old acquaintance who was bereaved.  She made the comment that she thought that she was ‘not grieving’.  When I asked what she meant by this, she replied that she had not begun to cry and was puzzled to find herself more angry than sad.  This conversation reminded me that we all have different perceptions of what grief is.  Such differences can make for misunderstandings of ourselves and others.

em syd 080

Grief is a response, a reaction to loss.  As such, it is a resonable, natural and necessary part of dealing with changed circumstances.  It is unique, very varied, idiosyncratic and highly personal.  There is no right or wrong way to grieve.  Grieving styles even within families can be very different.

Grief is not solely the domain of a reaction to a death loss.  It occurs whenever one has to adjust to new demands where one perceives a loss.  So it could be in losing a pet, changing jobs, houses, losing a limb, or losing a job.  It does not matter it still has a component of grief.

Grief is influenced by a wide range of variables, for example:-

  • Gender
  • Age
  • Culture
  • Religious or philosophical beliefs
  • Individual personality
  • Previous life experience, in particular previous experience of loss
  • behaviour learned from one’s family  of origin
  • the availability, nature and quality of support and care
  • physical and emotional health
  • the nature of the relationship with the person who has died
  • the nature of the ‘event’
  • the meaning or lack of meaning that event has

Grief is a complex phenomenon, and we should rightly be wary of those who might want to make ‘one size fit all’ and offer overly simplistic notions of what happens to us when we are grieving or overly simple advice about what to do to feel better.

Furthermore, we experience grief along all domains of our being, physical, emotional, behavioural, psychological and spiritual.

Physical sensations may include butterflies in the stomach, breathlessness, tightness in the throat or chest, over-sensitivity to sound or light, muscle weakness, lethargy, dry mouth, palpitations or gastrointestinal disturbances.

Emotional responses may include sadness, anger, anxiety, guilt, shock and numbness, yearning, pining, loneliness or despair.

Psychological responses may include disbelief, confusion, memory loss, preoccupation, distraction or impaired cognitive processes such as decision making.

Behavioural reactions may include sleep disturbance, appetite disturbance, absent- minded behaviour, lack of concentration, disturbing dreams, social withdrawal, frequent sighing, restless activity or crying, purposeless activity.

Spiritual responses could be questioning the existence of God, or your belief system, preoccupation with the afterlife, issues related to meaning and purpose.

The above list is by no means an exhaustive one but serves to illustrate the range of experiences that grieving people may encounter.

Many of the above experiences are mainly present in the early days, weeks and months and will naturally and gradually subside as we find out feet in a world forever changed.

Questions of meaning, purpose and identity may span many years.  This is often very common following the death of a child which so profoundly violates the natural order of things and may pose many questions about how the universe works.

alone bench person river

In the aftermath of a significant loss, we may feel frequently overwhelmed and lost.  The world has become a different place, and we no longer feel safe and secure.  The world is no longer predictable or reliable as it once may have been.  Beliefs and worldviews about fairness, justice and the world making sense in some organised way may be seriously challenged.

In a profound sense, while the acute, intense experience of grief will change and become more manageable, grieving continues to the end of our own lives.

We may rebuild life around the pain of the loss and engage with life but we never stop missing someone we love or when a child dies.

Grieving people need to have this complexity recognised and acknowledged, to be heard and understood in an empathetic and compassionate way that gives permission and time to grieve without judgement and in a way that is right for them.

A recurring theme I have observed in talking with grieving people is that too often this understanding is missing.  It is often said to me that ‘people don’t get it’.

It is a very difficult thing to wholly enter into another’s experience and difficult to find words to describe an experience that is so profound.  Sometimes it is only other parents who ‘understand’.

After the death of a child, re-entering your previous world may feel strange as you rebuild your life and relearn the changed world.  These factors add complexity to grief.  Many families at this time need also to deal with perhaps having had prolonged periods away from home, authorities never dealt with before, everyday routines have disrupted and life seems chaotic in the extreme.

Fatigue and stress are daily companions.

All of the above factors contribute to the ‘grief cocktail’ following the death of your child.  So, when you are given advice or information about grief and what you should/should not do, or be doing trust your instincts.   Do what is right for you, when you are ready.

If it makes sense to your head, heart and gut, give it a go.  If not, leave it alone.  It is important to note that the “time-frames” allowed to those who are grieving and rebuilding their lives is often disrepectively short.

Being a bereaved parent, sibling, or grandparent is not a club anyone chooses to join.

Experiencing the complexity of grief and the task of rebuilding and becoming accustomed to a life forever changed takes much effort, hard work, time and understanding.

 

 

written with thanks to my colleague Vera Russell.

 

worth saying again…

This piece of writing about grief that circulates from time to time is worth repeating if only for those who have not seen it, or who have found their circumstances irrevocably changed.

pexels-photo-289756.jpeg

Please don’t ask me if I am over it yet.

I’ll never get over it.

Please don’t tell me she (he) is in a better place.

She’s (He’s) not here with me.

Please don’t say she (he) isn’t suffering anymore.

I haven’t come to terms with why she (he) had to suffer at all.

Please don’t tell me how you feel.

Unless you’ve lost someone in the same way.

Please don’t ask me if I feel better.

Bereavement isn’t a condition that clears up.

Please don’t tell me at least you had her (him) for so many years.

What year would you like your loved one to die?

Please don’t tell me God never gives us more than we can bear.

Please just say you are sorry.

Please just say you remember my loved one if you do.

Please mention my loved one’s name.

Please be patient with me when I am sad.

Please just let me be free to be my changing self.

Please just let me cry.

 

These words, I think, illustrate two very important features of bereavement.

First, that it is not something that people recover from.  Rather it is a process of becoming.  Becoming more familiar with a world that has profoundly changed and my moving to a place where the heart-ache is carried more easily and in a way that permits enjoyment of life again.

Secondly, it describes the fact that while people die and are physically absent…our relationship to them does not die.  Children who have died continue to be a part of their families in ways that continue to evolve over our lifetime.   They remain loved ones that families want to talk about, whose stories they will continue to want to share with others and with whom they will maintain a deep and abiding eternal connection.

 

Supporting Grieving Adolescents

fantastic-wallpaper-with-butterflieMany bereaved families may have surviving adolescent children who are mourning the loss of their brother or sister.

This is often new territory both for the teenager and also for the parents trying to work out our best to care for them especially when they are feeling so emotionally depleted.

Some things to think about:

1. Grief is not always visible

Grief is not just the outward display of emotion. It is also the thoughts and behaviours that we experience in response to the death of someone we love.
As adolescents are in the process of becoming more independent of their parents and other important adults, they may at times feel reluctant to show feelings or talk about their thoughts as it can reinforce a sense of dependence and vulnerability. They may also choose to inhibit some of their thoughts and feelings out of a desire to protect their families. They may also prefer to share their experiences with their peer group.

Strategy: Be available

It is when we are listened to and heard is when we feel most understood. Create a home environment where open communication is encouraged. Convey to them that it is okay to have the thoughts and feelings that they may have and that you will be available should they decide to let you know what is going on with them.
As with adults, at the beginning of grief, it is sometimes very difficult to communicate what we are thinking and feeling…it is no less difficult for adolescents who have less life experience than adults and who, when they are feeling vulnerable may find it difficult to put things into words.

2. Don’t try to “fix” the pain associated with grief

It is difficult and uncomfortable for parents to witness the pain of their children. They usually want life to be okay for their children and are pained by what they see and uncomfortable about the helplessness it can create in them. This means that we may want to take away or fix the pain of those we love. This may take the form of avoiding conversation about the person who has died or distracting them from thinking or feeling their pain. While this may be momentarily effective, it can result in the adolescent hiding their grief or withdrawing or expressing their grief in destructive ways.

Strategy: Talk about the loss

Invite the adolescent to talk about the person who died. Encourage questions. Should the teenager not want to talk, respect this. Offer others that they may speak with about their feelings.
Always answer questions honestly and clearly. If you do not know the answer to something, say so. Share your memories, thoughts, beliefs and don’t expect that your teenager will always see things as you do.

3) Understand that grief does not proceed in orderly predictable stages.

Young people grieve in doses. Like with adults, their grief is more likely to go in waves. Sometimes adolescents may have outbursts of grief after a period when they have seemed perfectly okay. Know that this is normal. Their grief like yours, may at times seem unpredictable. They are no better at grieving or making sense of the world than adults. The difference is that they may seem unaffected for periods of time and a burst of emotion can catch parents unawares.

Strategy: Allow for adjustment

Because grief does not proceed in an orderly fashion, teenagers need to be allowed leeway as they adjust to a life forever changed. Providing a secure, consistent environment with predictable routines is important. This helps to generate a renewed feeling of safety and security. Be aware of any danger signs such as violence, drug and alcohol abuse, risk-taking behaviour or dramatic changes in personality. Seek help when necessary.

4) Model Healthy Grief

Like all of us, adolescents learn from those around them. They will pick up implicit and explicit messages from those around them on how to grieve. This is how they think they should behave or are expected to behave. They take their cues from important grown-ups in their lives (even if they do not look like they are paying attention).

Strategy: Mourn together

Be aware of the messages that they may be receiving from those around them about how to grieve and offer alternatives when appropriate.
The more adolescents observe healthy communication and the appropriate expression of the many feelings associated with loss, the more likely they may understand, accept and manage the breadth of emotions and thoughts they may have.

Try as much as possible to consider what things might look like from their perspective. Give thought to the closeness of the relationship your teenager shared with their brother or sister. Acknowledge the deep loss it is for them too.

When you can, in the midst of your grief, set aside time, attention and availability for the adolescent. That does not necessarily mean talking about the death but maybe just time spent together doing something that is fun and thereby communicating that they matter and they too are important.

Finally, remember that this is new for all of you and that there will be some trial and error as families become better able to take care of each other.