Sunday, November 1, 2009

Over the hills and far away...

Lindy has just written an essay for her counselling course which I
(Chris) encouraged her to put on the blog. It's long so only the
beginning appears below. You'll have to follow the link at the end for the rest.

This is a reflective essay written by 'Old Mother Duck', who went out
one day, "over the hills and faraway" but when she called, "quack
quack, quack quack: only four of her [five] ducks came back." Her lost
duckling would never come back, but every day she went out to look for
him anyway. This essay, is about grief due to bereavement. I will
begin with an account of the last six months of my oldest son's life
and then briefly present some theories specific to counselling in
loss. These discussions are, of necessity, glimpses only, and include
key concepts and approaches from Freud's beginnings in 1917 to one of
the current theories proposed by an American professor of psychology,
Robert Neimeyer (Neimeyer, 2000). I shall present the theories
factually without my own opinions but my experiences are included in
the essay where relevant. I will finish the essay by looking briefly
at loss counselling possibilities while omitting more general theories
and skills, including how my experience might affect me as a
counsellor.

Ben

"Out of a clear blue sky" has resounded in my head since my strong and
healthy 23 year old was diagnosed with a rare lymphoma. Ben had a lump
on his leg. After a couple of months he thought he should have it
checked out. It surely was innocent but it was growing. It took weeks
of different doctors' opinions to have it correctly diagnosed. The
lump was now the size of a tennis ball. It was growing every day and
looked red and swollen to shiny. It was painless. The cancer journey
started for me with his words, quiet and serious, 'It is cancer Mum.
Not maybe.' That was the beginning. We of course assumed it would be
an annoying interruption to Ben's life and nothing more. How wrong we
were. The end of June 2008 until the beginning of December that year
was all the time Ben had left.

[If you want to read more, go to the full essay.]
Radiation removed the lump on his leg but the lymphoma had already
spread. He had major surgery to remove a spleen six times its normal
size and a gall bladder infected with malignant cells. He reacted
badly to one of the miracle drugs he was given and needed increasingly
large and dementing doses of morphine. His suffering was intense and
we were amazed at his bravery and lack of complaint. He became a ward
favourite but had to be moved to the Intensive Care Unit (ICU), due to
failing pulmonary function.

Finally he was intubated and kept in an induced coma for eight days.
We watched our darling man-boy oblivious, with intravenous lines into
all parts of his body and listened to the swoosh and hiss of the
respirator breathing for him. We watched his monitors. We asked
questions. We saw his chest x-rays looking increasingly bad. Still the
medical experts spoke of hope and there being a chance of recovery. We
rejoiced when they extubated him. We assumed the best, but he was
already dying. We had three precious days with him awake. We talked
with him about 'What if you go…' He watched videos from his ICU bed
with his brothers squashed into the cubicle with him. He spoke the
fond and loving words of the dying. They have carried us through some
of our darkest moments. He saw friends and the extended family and
left short messages for people who were not allowed into the ICU. We
watched with increasing pain and fear as his blood oxygen levels
continued to drop. His body systems were giving up. He was exhausted.
He said 'I just want to come home and sit in the sun.' We were going
to lose him but still I thought there was a chance. Three days after
they extubated him, the medical team said he had to be intubated
again. He said 'If I have to go, being in an induced coma is OK. I
know what happens. Its just going to sleep.' And so we said goodbye as
though it might be the last time; all the while believing that it
wouldn't be.

Once unconscious and intubated again, to our shock and horror, he
immediately deteriorated. Many of the medical staff shared our pain.
They told us there was no hope of him recovering; the lymphoma had
done too much damage. Along with our despair, we held on to our
resolve to not have him suffer pointlessly. With tears rolling down
our faces and a surreal sense of what was happening, we agreed to turn
his life-support off. 'Was this really happening?' I asked myself.
Everything except the respirator was turned off. We watched the graphs
go flat. The respirator hissed on. We watched him die. We died too.
Our man-child was a bruised and waxen body on an ICU bed.

A Glimpse of the Origins

Sigmund Freud, is cited as having the first insights into grief as a
process. He researched grief and loss and then published a paper
called 'Mourning and Melancholy' in 1917 (Mallon, 2008, p6). This
paper outlined his proposals and they became the basis for future
theories of loss. He proposed that there was 'grief work' to be done
by the bereaved. The goal of grief, he said, was to withdraw emotional
energy from the deceased (cathexis) and so become detached and able to
re-direct the love/energy to a living person (decathexis) (Mallon,
2008). This 'detachment' from the deceased was the sign of 'success',
or put another way, that the grieving process was complete and the
bereaved was ready to 'move on'. A British psychiatrist, formed in the
Freudian psychoanalytic tradition, John Bowlby, expanded this
hypothesis of Freud's and proposed 'Attachment Theory' in the 1960s.
He defined it as, "a strong affectional tie that binds a person to
[another]." (Sigelman & Rider, 2009, p. 408). Our first attachment,
said Bowlby, is our primary carer, usually our mother. Bowlby went on
with his research and in the late 1960s, with Mary Ainsworth, an
American developmental psychologist, proposed that a person's
behaviour can only be understood when the environment which has been
theirs is understood (Sigelman & Rider, 2009). A few years after his
findings with Ainsworth, and now in the early 1970s, Bowlby continued
his research, this time with Colin Murray Parkes. Together they
developed a theory of grieving and loss which was based on Bowlby's
'attachment theory'. When we look at their new theory of grief, we see
that they have built on Freud's original ideas of cathexis and
decathexis, formalising the process of grief into four distinct
stages: numbness, shock and denial; yearning and protest; despair and
disorganisation and fourthly; reorganisation or 'letting go' of the
attachment to the deceased (Mallon, 2008, p7).

Meanwhile, also in the 1970s, a Swiss doctor was developing a new
theory based on her experiences with dying patients. She was of
course, Elisabeth Kubler-Ross and she wrote On Death and Dying (1970),
which is still 'the' text used when thinking about the dying process.
She proposed that it was a journey of stages and she acknowledged her
model was based on Parkes and Bowlby (Kubler-Ross, 1970, as cited in
Mallon, 2008, p8). She outlined five distinct and observable stages:
shock and denial; anger, resentment and guilt; bargaining; depression,
and lastly; adjustment and acceptance (Hooyman & Kramer, 2006, p. 37;
Kubler-Ross, 1970). Hooyman and Kramer make it clear that Kubler-Ross
herself acknowledged that her stages of dying were not intended for
the experience of bereavement.

Moving into the 1980s and 1990s, Mallon (2008, p9) cites a Harvard
psychology professor, J. William Worden, developed the concepts of
'grief work' and the 'tasks' involved. While his concepts are clearly
a conglomeration of theories of the time, he proposes a new and
important shift by changing the emphasis of grief to being 'grief
work' and 'grief tasks'. Worden went on to say that if the client
accomplishes his tasks, he will find himself at a 'successful'
conclusion to his grief journey. The tasks were, he said: An
acceptance of the loss as permanent; the pain of grief acknowledged
and experienced fully; adjustment to an altered reality and fourthly
and finally; relocation or 'letting go' of the deceased and investment
in a new life (Hooyman & Kramer, 2006).

The Family

Worden's emphasis on the completion of the tasks mentioned, has made
it, and still makes it a favoured method in family counselling. The
wording of the tasks has been slightly modified to suit the grieving
family system and the family grief counsellor uses the 'tasks' as
goals to aim for. (Hooyman & Kramer, 2006). Janice Nadeau (2001),
another prominent family loss theorist, concurs with Worden, stressing
the importance of family goals. She states that the bereaved family
unit must re-group in order to learn to function well again (Nadeau,
2001, as cited in M.S. Stroebe, W. Stroebe, & R.O. Hansson Eds.), and
describes the need for the family as a unit to actively search for new
meaning (Hooyman & Kramer, 2006).

There are many people who say that marriages often do not survive
major upheavals or losses like ours. My husband and I have always
invested time into our relationship, seeing it as a most important
priority. Since Ben's illness and dying, we continue to invest (and
enjoy) time together and are vigilant in monitoring our 'marital
health.' We see this as a life task, made more challenging because of
our individual and sometimes incompatible grieving processes; for
example I dwell and mull over things and he 'gets busy'. Dinners out
together every week where we can talk and listen to each other and
clear up 'issues' that may have arisen during the week are important
to us. We both believe it is important that we are more intentional
about monitoring the emotional health of our family unit than ever
before. The family as a unit of course, can only be as healthy as each
individual in it so each child needs careful consideration. Family
dinners have been a part of our lives as a family of seven and now as
a family of six present and one absent, we still sit and eat together
once a week. In this new though unwelcome family configuration, dinner
is still a time where we laugh and talk but now we share the added
bond of our unseen Ben who is still often part of our discussions and
laughter. As I write and reflect I think I can say that our family is
doing well. As we begin the life-long process of accepting and
readjusting, we are beginning to reconstruct meaningful moments and
memories in our collective and individual lives.

New models

Before I look at my last theorist, Robert Neimeyer, I must first
mention Margaret Stroebe and Henk Shut (1995, as cited in Mallon,
2008, p9). It is with their theory the Dual Process Model of Coping
with Bereavement. (Stroebe & Schut, 1999 as cited in Stroebe and
Schut, 2008), that the old models I have presented, begin to be truly
challenged. The 'Dual Process Model' states that the bereaved person
does not progress through stages but oscillates between, 'loss
orientation' and 'restoration orientation'. They describe, in
technical language I believe, what the bereaved call our
'roller-coaster' ride or 'waves of grief': Mourning, yearning and
pining for the lost one and the past life, and the complement reaction
of 'restoration orientation': where the focus turns towards the
future; including a goal, adaptation and functionality (Strobe &
Schut, 1999, as cited in Hooyman & Kramer, 2006, p42).
Robert Neimeyer (2000, p55 as cited in Mallon, 2008, p11) is a
professor of psychology in Memphis who is a current researcher into
death, suicide and loss (Neimeyer, 2000, back cover). Similarly to
Stroebe and Shut, mentioned above, his model is significantly
different from the traditional models looked at previously. While
Nadeau and Worden alluded to meaning-making as important, Neimeyer
says the reconstruction of meaning is 'the' way to live again (Robert
A. Neimeyer, 2000). "This is described as a constructivist or
narrative approach." (Mallon, 2000, p11). It proposes that purposeful
grief, changes the structure of the grief journey (Mallon, 2000).
Neimeyer says that "loss…forces the unbidden exploration of a
new…painful…boundless journey from which we will never completely
return." (Neimeyer, 2000, p200). While previous theorists wanted us to
'return' to the normality we knew prior to our tragedy, Neimeyer
recognises that we won't, can't and don't want to return without the
person we have lost. He says that the bereaved must create a new
'assumptive world'. Neimeyer's term 'assumptive world' is the world an
individual has come to rely on. Neimeyer argues that any disruption of
it causes a profound destabilising in the affected individual
(Neimeyer, 2000). I know this to be true as I experience shock and
disbelief that Ben has gone. Yearning, fear and stabbing sorrow mix
together with disbelief and make my world seem a frighteningly
unpredictable place. A new 'assumptive world' will take a number of
years to establish.

Counselling in Loss

"The grief counsellor acts as a fellow traveller [with the bereaved]
rather than consultant, sharing the uncertainties of the journey, and
walking alongside, rather than leading the grieving individual along
the unpredictable road toward a new adaptation" (Neimeyer, 2000, p.
200). While most skills and techniques used in bereavement counselling
are the same core skills used in integrative counselling (Corey, 2009)
and not referred to here, the brief therapy, goal orientated general
counsellor, needs to accept that grief cannot be 'fixed'. Having said
that, Neimeyer's 'narrative therapy' is about the client telling his
story and thereby restructuring meaning and creating a new 'assumptive
world'. In the few weeks after Ben's passing, I wanted to tell anyone
and everyone what had happened. Neimeyer says that this is the
beginning point of searching for new meaning (Neimeyer, 2000).

The counsellor's most important job is clearly to encourage the client
through verbal (Geldard & Geldard, 2005) and non-verbal (Egan, 2005)
cues, to talk through their story; repeatedly if the client wants to.
"Can you tell me more?" "What was it like for you when…" "Can you
describe it for me?" Skills like attentive and active listening,
reflecting of feelings and thoughts, paraphrasing, probing,
summarising (Geldard & Geldard, 2005), all help free the client to
share their story of grief. Neimeyer stresses that the grief
counsellor should suggest that the client finds activities and
projects which might comfort him as he walks a road he didn't choose
and which he still fights against. Photos everywhere, DVD recordings,
memorabilia displayed, blogs, written memories from friends and
family, celebrating anniversaries and birthdays in a fun way, special
memorials in cemeteries. These are only distraction techniques but
they have helped and continue to help me to 'make it' through every
day. As a counsellor I will include suggesting to my client finding
activities or projects as a way to start the reconstruction of
meaning. I would see it as valuable to explore specific 'meaningful'
options with my client to lend a sense of purpose and direction to the
counselling session. I will always stress that the aim of counselling
in bereavement is not to detach from the loved one but to continue a
modified relationship with them.

As I walk through my own valley of the shadow of death, I am aware as
Worden warns (1991, as cited in Hooyman & Kramer, 2006), that if I
cannot be honest about my own journey and feelings then I may well
jeopardise the healing process in my client. Having recognised this
possibility, it is also true that my grief experience might well
heighten counselling qualities so essential, like empathy,
unconditional positive regard and congruence (Egan, 2007).

Conclusion

In conclusion, I have looked at the evolution of counselling in loss,
through a few theories beginning with Freud in 1917. I have found that
until the late 1990s, the theories were linear and had their origins
in Freud's original propositions. I explained that I could not relate
to those theories but was encouraged to discover Neimeyer and his new
model of 'reconstruction of meaning' and the 'assumptive world'. I
found that families need special care in times of mourning and sorrow
and that counsellors must know that they cannot fix grief. I
acknowledged that my own experience could help me as a counsellor but
it could also cause problems to a client if my own journey is
unresolved.

[Back to BensGotCancer main page. ]

3 comments:

Elizabeth said...

As someone unfamiliar with grief/counselling theories, I found your essay very interesting. I liked how you linked your personal experience to the final, most helpful theory. Thanks for sharing!

Anonymous said...

As a child I could never stand the sadness of the Mother Duck losing her ducklings - my mum had to make up numerous other verses where she found her babies, everything was OK, they were safe etc.to placeate me. I think that in a way, you are finding your Duckling, you can make up as many following verses as you need.

Philippa said...

Thanks Lindy. We know grief changes us but often don't like to acknowledge that it does. I think your essay helps us to see a new way that the change may add a depth to who we are that is helpful to us and others. Thanks again for sharing! Philippa