Introduction
It’s not quite a year since I wrote this reflection on Grief as a requirement for Module 7 of the 10 Module Online Death Doula course which I completed. As I explained, it was the most challenging module reflection for me.
Grief remains
profound and relentlessly present for me: being an uninvited constant intruder. It’s
stepped up its presence a notch or two and feels overwhelming right now. I’m aware of
what’s happening and can “normalise” what I’m experiencing in context of
recently making an exceptionally painful/challenging/agonising decision that my
head is trying to come to terms with and make sense of: to ‘justify” … I guess.
All the while,
my heart is heavy and broken. I cry often, and feelings of deep sadness are
present as “guilt” uses every opportunity it can, to attempt to undermine,
sabotage, derail my thinking. It will not prevail. I know “guilt” too well. It's been present on-and-off throughout my life and sometimes I've played along with it, allowing it to influence me - other times not.
I haven’t made
“the decision” lightly or on the spur of the moment. In fact, it’s been an
agonising process. Such a significant and life-changing decision as someone who
holds immense power and responsibility as a Guardian (EPA) and has power of
attorney (EPA). I can say, that the decision has been brewing for a while as
caring for mum becomes more challenging for me. So, in the not-too-distant
future my darling mum aka – BettyBoo, will be entering aged care in a place
where she’s been for Residential Respite every couple of months for the past
two years. I can’t think of much else to say or do before, through or beyond when
this happens, except of course to see to the administrative tasks required and
importantly: more important than anything else, to ensure the transition for
Mum is the best it can be.
Some years ago,
in conversations, we had talked about the possibility of mum living somewhere
else - Valley View - other than her home of 68 years or with me. Mums memory cannot access
those conversations now. But, I know that these conversations were held and Mum was okay. I can recall her initiating such a conversation.
I've been reflecting on "trust" in writing this. That someone legally gave over responsibility to me to make the decisions I've made is incredulous. And so, this responsibility is well-recognised and acknowledged for what it is. It comes from a place of love, compassion, care & protection - for us both.
I love you Mum.
Last paragraph from post 20th February 2017
Name:
Lanie Pianta
Date: 21st June 2020 - started writing this on 4th
June.
G’day B,
Beaut to talk
with you recently.
As I started to write here, it suddenly became clear for me, that the formatted series of questions was challenging. They seemed to not be compatible with how I usually think and write, which is more of a flowing progression type of process where I feel I’m more able to express myself in context of what’s being asked here, rather than respond to separate formatted questions.
A very personal
preference of course, that seems important for me to acknowledge here. Writing
in essay form, mirrors how the series of questions intersect and flow into each
other and subsequently, can be well-incorporated in this format which facilitates
the opportunity for me to respond to the questions asked, in my unique way.
After having come to that conclusion alongside excessive procrastination, this reflection has been the most challenging for me write about so far, for a whole bunch of reasons. First and foremost, though, is the here-and-now deep loss and grief I am living. You know my story B, suffice to say that in the past few weeks that matters have changed that have heightened my feelings and responses.
Loss & grief is ever-present for me as I witness what’s happening for my Mum – who I deeply love, as I care for her 24/7. Mum, who is living through cognitive decline – and the impact of that, upon us both: a disenfranchised and ambiguous loss & grief. Mum’s currently in Residential Respite at a good place where she has been 6 times already. Of course, given Covid19, some arrangements there have changed including the room which is usually used for Respite and the visiting hours which are minimal but, daily. I arranged to have an MMSE completed as it’s been two years since the original ACAT. I knew there’d be changes. My professional self understands and acknowledges this. However, when compassionately advised of the “score,” I was devastated. This threw me into a spiral of despair accompanied by a rollercoaster of emotions for a couple of days until I evened out with the support of two key folks: a good friend and my sister-in-law.
Part of my
strategy here will be to not be consumed by the “score” rather, focus on how
Mum manages well in her everyday environment: is happy, loving, curious and
enjoys many activities. To focus on the everyday situation and making life as
good and loving as I possibly can.
So, for me …grief
is not lingering – it’s full frontal. Its presence is strong and clear and
relentless.
There’s also –
for me, the ever-present grief in context of what’s happening in the world:
before and beyond Covid19. I’d include climate change, inequity, injustice,
oppression, racism – systemic injustices - and violence experienced every day
by billions of people globally: poverty in the broadest context impacts upon me
everyday too. It’s pervasive. I try not to be pulled into this and focus on that which I do have some control over in my daily life.
The dynamics of grief have been well-theorised over time. These theories provide society / us, with frameworks – ways to facilitate meaning-making and understandings of our unique experiences within non-pathologising contexts that say … “this commonly happens for many people” and that your/our responses to and experience of loss, grief and mourning are usual and to be expected … “there’s nothing wrong with you.”
I’ve been aware
of two important researchers and writers in the area of loss and grief for a
long while as I journeyed through social work and life, and sought out
explanations beyond that offered by Kubler-Ross (KR) and the Five Stages of
Grief, which never resonated with me given its linear pathologising approach. I
understand that KR stated before her death, that her theory was never intended
as a linear approach. An approach which since it’s development, has infiltrated
the mainstream and became the dominant narrative – and still is for some. I was
pleased to see in this piece that … “Many researchers, psychologists, and clinicians are leaving the model
behind due to several issues.”
https://www.psychologytoday.com/au/blog/mental-health-nerd/201911/the-4-tasks-grieving
In more recent times, I’ve become aware of J. William Worden’s Four Tasks of Grieving. Worden identifies four tasks in grieving: accept the loss, acknowledge the pain of the loss, adjust to a new environment and reinvest in the reality of a new life. The tasks of grief are not a list or criteria of achievement, rather, a fluctuating process to accommodate a new “normal” lifestyle without what/who was lost.
This appeals to me, it’s common sense, uncomplicated,
contemporary and reflects my experiences of grieving through my lifetime and
those of other people whose pathway has intersected with mine.
And alongside
this, as I’m writing this, I’ve also just discovered The Dual Process model of
grief – Stroebe & Schut. Links and information about both, are provided in
the attached resources page. I’ll be reading up more on this when I can.
Back to Doka
and Boss, who’ve been present for me for decades and who have significantly
influenced my thinking and action in the context of loss & grief in my
personal and professional life. The recent discoveries will deeply enrich my
knowledge too.
“I define disenfranchised grief as grief that results when a
person experiences a significant loss and the resultant grief is not openly
acknowledged, socially validated, or publicly mourned. In short, although the
individual is experiencing a grief reaction, there is no social recognition
that the person has a right to grieve or a claim for social sympathy or
support.”
(PsycINFO Database Record (c) 2019 APA, all rights reserved)
Doka, K. J. (2008). Disenfranchised grief in
historical and cultural perspective. In M. S. Stroebe, R. O. Hansson,
H. Schut, & W. Stroebe (Eds.), Handbook of bereavement research and
practice: Advances in theory and intervention (p. 223–240). American
Psychological Association. https://doi.org/10.1037/14498-011
Of course, since Doka originally developed and advanced the concept of disenfranchised grief in the late 1980’s, societies and “our” understandings of loss and grief have grown. That said though, it’s likely that many people do not consider it.
Doka’s work has
long resonated with me. I became aware of his work a couple of decades ago as I
stepped into my social work journey and immediately encountered people whose
lives had been, were and continued to be influenced / impacted by loss and grief. Doka’s work, for me carried with it a
context of social justice & humanity: a recognition of how marginalisation
and exclusion can continue for some folks beyond life and into death. I guess,
the same could be said with Pauline Boss’s work.
Pauline Boss
describes two basic kinds of ambiguous loss …
“In the first
type, people are perceived by family members as physically absent but
psychologically present, because it’s unclear whether they are dead or alive. Missing
soldiers and kidnapped children illustrate this in its catastrophic form. More
everyday occurrences include losses with divorced and adoptive families …”
“In the second
type of ambiguous loss, a person is perceived as physically present but psychologically
absent. This condition is illustrated in the extreme by people with
Alzheimer’s disease, addictions, and other chronic … illnesses.”
Pages 8,9 Ambiguous Loss: Learning to Live with Unresolved
Grief – 2000.
Pauline Boss –
from an interview
https://onbeing.org/programs/pauline-boss-navigating-loss-without-closure/
“… Today, the new research in grief and loss does not recommend linear stages. We like linear stages, though. The news media really likes it because, in fact, it has an ending. It has a finite end. If you start with stage one, and you move on through stage five, you’re done.”
“And yet, with the ambiguous loss of,
let’s say, Alzheimer’s disease and 50 some other dementias, caregivers are said
to be depressed. Most of the caregivers I have met and studied and treated are
not depressed; they’re sad. They’re grieving. This should be normalised.
Sadness is treated with human connection.”
I’m aware that
overwhelming emotional distress has been and is still pathologised and
medicalised alongside what’s called “mental illness:” especially in many
western countries where many rituals, ceremonies, processes and connections
around dying/ loss/ grief/ mourning - have been … lost, misplaced, discarded, replaced
(industrialised /corporatised) and largely taken out of the hands of people who
in times past, would’ve been present through all aspects of peoples end of life
journeys and beyond.. I can’t help but think that this has hugely impacted upon
us in these times where it seems that “our” lives have been to a large extent -
compartmentalised. And so, when “our” responses to the unfamiliar aspects of
life, dying & death processes are not as prescribed by “experts,” it can
and does influence and lead to the medicalising of this and subsequently
entered the DSMV – the psychiatric “bible” that finds a “disorder” for almost
anything.
Of course, many
of us live in fast-paced times: we’re disconnected from traditional ways and
relationships that are fundamental for humans to thrive, not merely survive.
It’s important
to say here and perhaps I’ve said it in a previous reflection, that “we” are
often carrying many-stories and experiences from our multi-storied lives. What
I mean is that perhaps alongside the experience of impending or actual loss
& grief in a particular situation where I may be present for someone, I
must be alert and aware that there could be diverse issues present for all key
stakeholders – the person facing their death, their significant other/s …
anyone involved. These are too many to mention here, but for example, could
include issues from the social/economic/ psychological/spiritual ++ domains:
current or historical.
If someone
special in to me was dying or had just died,
what would best-help me, would be for the person/s to simply “be there”
without thinking they should or needed to “fix” or do or say anything, unless I
specifically ask. Those closest to me would know this. Perhaps too, to hold me,
and hold hope for me too, without platitudes or clichés. Generally, to look out
for me, ‘because I may well be feeling overwhelmed with sadness and unable to
focus, think straight, be disoriented & lost. Importantly, to ask me … “what can I do for
you?” or “how can I help?” Don’t assume, just ask.
Ah, recovery.
The language of recovery seems to imply that something’s broken and needs
repairing. For me it fits with medical model thinking. It isn’t something I’m
drawn to. I tend to think of life as including broad spectrum of experiences
and I would include loss, grief, mourning. My position is that “we” generally
integrate / assimilate a whole range of diverse experiences into our lives.
Those experiences are there, they happened. Most people process what happens –
and continue to live with that being part of their/our multi-storied life. We
generally learn from those experiences and incorporate that into our repertoire
– our valuable learning, that we carry with us into new and different or
similar future situations. It’s part of our human-ness to be able to learn from
events and situations that have impacted upon us. And even though each
situation is different and unique, we generally don’t feel ambushed or caught
off guard as we may have with a new experience. Of course, the nature of a
relationship is a significant factor.
Edit: apologies, links aren't live, so I recommend that you copy and paste to google in order to open.
https://www.alustforlife.com/tools/mental-health/william-wordens-four-tasks-of-grief
https://crhcf.org/insights/wordens-tasks-of-mourning-spiritual-exercise/
https://www.psychologytoday.com/au/blog/mental-health-nerd/201911/the-4-tasks-grieving
https://crhcf.org/insights/dr-ken-doka-on-grief
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http://stoptheshunning.org/kendoka.pdf |
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Kenneth
J Doka
https://youtu.be/sw2Hm3C1xGo
https://onbeing.org/programs/pauline-boss-navigating-loss-without-closure/
https://www.frazerconsultants.com/2018/04/grief-theories-series-modern-grief-theories/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5033290/
https://www.researchgate.net/publication/271943193_Bereavement_theory_recent_developments_in_our_understanding_of_grief_and_bereavement
https://whatsyourgrief.com/a-deep-dive-into-secondary-loss/
https://www.healthline.com/health/mental-health/disenfranchised-grief#coping
https://alzheimer.ca/sites/default/files/files/national/core-lit-brochures/ambiguous-loss-and-grief_for-individuals-and-families.pdf
Professor
Robert Neimeyer – The Dual Process Model (Stroebe & Schut)
https://www.youtube.com/watch?v=ElTFr2Qc6iM
Stroebe &
Schut – Dual Process Model
https://www.funeralguide.co.uk/help-resources/bereavement-support/the-grieving-process/the-dual-process-model
