saying goodbye - a loving tribute

 

I am broken-hearted.

My world is diminished & impoverished by your leaving it.

You were the first place I lived: my first relationship & connection with the world.

You were my first love, before I learned what love is.

You remain my longest love.

Our relationship developed, flourished: it endured & survived the twists and turns, the ebb and flow of life and all that brought for us both. Largely because of your wisdom, patience, humility.

We resolved any differences over the years, quicky and without grudges held.

You & Dad provided me with a safe, secure, happy, adventurous childhood: underpinned by the values and beliefs you lived your daily life by, providing a strong foundation for me.

You & Dad were … “always there” … unconditionally - through early & older adulthood: especially when I made some “iffy” choices & decisions.

You befriended Cathy when we met age 18 years and became her life-long friend too, and her second mum, good mates with Stan and Nan to Cathy & Stan’s children – Jodi, Ange n Bec n their children. You had so many marvellous, happy, fun, memorable times with them including all sorts of milestones. They were family. Quite simply, you loved them: they loved you. You often travelled to Derby to visit them and then often twice a year to Geraldton, where you had your own room.

You celebrated with me when I “found” myself personally & professionally.

You have been my strongest constant ally & supporter: never wavering.

You embraced Joanne when we partnered 35 years ago: welcoming her into our family. You became life-long friends, even after Jo & I ended our relationship.

In your later years, your late 80’s when you/we lived between Collie & Busselton, your relationship with Jo was enriched by time together when I still worked and beyond. Strong allies who often ganged up on me. You always sided with Jo. We were “family.” You loved Jo & she loved you ... simple.

You holidayed with us in Wyndham & Karratha too. We took you and Laurel to Singapore where we had great time.

My eternal thanks Jo, for “holding me up” for your love & friendship especially these past few years and now.

And Bev, your wonderful daughter-in-law, my sister-in-law with whom you formed a loving and enduring relationship over the years n decades. Bev was as another daughter for you. Family. Thank you, dear Bev, … for “everything,” including the fabulous hair do’s over the years. You loved Bev & she loved you.

My toughest & almost unbearable life challenge, darling Mum, were the years of ambiguous, anticipatory loss & grief as I bore witness to the horrendous disease which had you in its vicious grip and tried its very hardest to destroy you – the essence of you. It did not succeed! There’s no doubt about its enormous impact upon you: your cognitive acuity & eventually your physical wellbeing. Your quality of life in your final months lessened for sure.

Throughout, you remained brave, courageous, curious, funny, cheeky, loving … even your time of death 9:45 pm, was considerate. A quiet time, no bells, alarms, people milling about. Just you, Jan, me & 2 x nurses.

I take this opportunity to sincerely thank remarkable ValleyView folks. You know how much gratitude I have for you what you do, and who you are, as I told you often. Though you brushed it aside saying it’s your job. It was more than doing your job. It was above and beyond that!

Relationships & love are the constant themes as I reflect on your wonderful life darling mum. You were exceptional at them and open to them. They in turn provided opportunities and pathways into the lives of a wide range of people and all that that brought with it.

How fortunate am I that you are my Mum: that you existed.

I am shored up emotionally after your leaving, by the infinite memories of what we shared and created and whose lives you touched. I will survive the grief & mourning journey for you: because of you … and LOVE.

                                                             

                                                                   Mum often said ...

"I've had a good life" 

Betty Lorraine Pianta

 Born: 9th  September 1927

                                                      Died: 9th May 2024

   

A Reflection on Loss & Grief

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

My mum would be considered unremarkable in the eyes of this fast-paced and disconnected society. I see her as extraordinary! She's one of the most generous people I know (in a diverse sense). And like many contemporaries of her generation, she's always given of herself to her family and others. Mum often says ...

"I've had a good life" 

Betty Lorraine Pianta

Born: 9th September 1927

Edited: 19th May 2021

On Friday 23rd April 2021, my darling Mum became a permanent resident at ValleyView.

My heart remains heavy & broken. That I wasn't able to continue to care for her in the community does and will carry guilt. My head understands and holds a different view, but still ...

... oh, I surely hope so🙏

DEATH DOULA TRAINING

REFLECTION/FEEDBACK SHEET MODULE 7

Name:     Lanie Pianta           Date: 21^st June 2020 - started writing this on 4^th 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.

  

Useful Resources – Module 7

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

http://stoptheshunning.org/kendoka.pdf

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

 

A Journey with my Mum into the unknown.

Dear Mum

I'll be back here on Thursday afternoon after work.

I have your Bank Book to pay 2 bills for you + get the $450 I gave you from my ATM so you'd have some cash.

The money is in the usual hiding place and some is in your purse.

I'll order some wood for winter from the saw mill.

I LOVE YOU.

Lanie xxx

As usual, I wrote this note for my mum before I leaving her late Saturday afternoon to return home, after arriving from work on Friday night to stay overnight and into the following day. It's a fairly stock-standard note. I leave my notes on a large pad on her kitchen table after visiting with her a couple of times a week. Our routine is fairly well-established now.

The notes are as much for mum's benefit as for any family members or friends who call in. Those visitors will sometimes write on the note that they've called in. Helps me too. Helps me to clarify what I've done or what needs to be done. I'll often take a photo of the note, just in case I forget something!

I asked mum to read it to ensure she could read my writing. She did, reading it out loud to me. Mum paused at the last line, smiled then said ... "I love you too," and we hugged.

I tell my mum ... "I love you," every chance I get. 

I tell her how important she's been in my life and still is. 

I tell her this for a several reasons: I actually do love her, always have; secondly, she's ageing, almost 90 years; and finally, she may not remember me in coming years. Maybe the coming year.

My dear mum is experiencing short-term memory loss which impacts upon her in myriad ways. I'm fairly well-informed primarily because I work in the health area and have daily contact with folks and their loved ones who are experiencing what my mum is. I see this as both a challenge as I see the possible future and a bonus in that I get to learn from folks.

Mum's not had any medical tests or scans specific to what she is experiencing. Not for want of me initially trying. Over a period of 12 months, intermittently, I suggested to mum about going off to see her local GP about some tests and a referral to the Gerontologist. Ultimately, mum outsmarted me. "I'm okay love, I'm just getting old." After liaising informally with a couple of Gerontologists and a colleague, at my workplace, I decided to let it go. I needed to: coming to the conclusion that I and some family members know what's happening for mum and I know how to access appropriate services if and when we need any help in the future.

When people asked ... "so is your mum being resistant?" I'd simply respond ... "actually no, mum's outsmarted me."

Whether mum's aware of what's happening for her or not, I finally concluded that she / we / I, do not need the burden of a diagnosis hanging over her / our / my head. That may-well happen eventually: but not yet. I will not have her defined by a diagnosis and label that carries with it a terrible-ness that I, as someone who loves her dearly, could not bear and because I know her so well, would cause her distress.

So, there's been no MMSE which is similar to this:

https://www.ihpa.gov.au/sites/g/files/net636/f/publications/smmse-tool-v2.pdf
There's another question where I work that asks folks to start at 100 and count backwards in sevens i.e 100 - 93 - 86 -79 - 72.
Nor an Aged Care Assessment:

www.myagedcare.gov.au/eligibility-and-assessment/acat-assessments

I will not have this kind, contented, generous woman who has always, always been there for me, defined by what she is now experiencing. Mum is loved, safe and living well in her own home that she and my late dad, built 65 years ago. She potters in her big back yard, gardens, sits on a big old lounge/sofa on her front verandah watching folks come-and-go and watching the birds in the nearby trees. She loves reading. Mum loves watching sport on TV, especially football and golf too. She loves going on road trips, no matter how big or small they are. She enjoys company and enjoys being with herself. She loves children, particularly little children. Mum is a great grandmother of ten. 

My mum would be considered unremarkable in the eyes of this fast-paced and disconnected society. I see her as extraordinary! She's one of the most generous people I know (in a diverse sense). And like many contemporaries of her generation, she's always given of herself to her family and others. Mum often says ...

"I've had a good life" 

Betty Lorraine Pianta

Born: 9th September 1927

A Country Social Worker: Narrative Notes ... from 2012

A Country Social Worker: Narrative Notes ... from 2012: Recently when tidying up my resources, I came across some notes I made at some narrative training at the Dulwich Centre a couple of years ag...

Posts

cautious, careful people ... Susan B Anthony

"Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.”

— Susan B. Anthony 1820 - 1906

UnRecovery _ Recovery In The Bin

Recovery In The Bin

"This User Led group is for MH Survivors and Supporters who are fed up with the way colonised ‘recovery’ is being used to discipline and control those who are trying to find a place in the world, to live as they wish, trying to deal with the very real mental distress they encounter on a daily basis. We believe in human rights and social justice!

We want a robust ‘Social Model of Madness, Distress & Confusion’, from the left of politics, placing mental health within the context of the wider class struggle.

We consider “UnRecovered” is as valid and legitimate as “Recovered”, and we accept and respect the political and social difference. So some of us have accepted a new word / signifier “UnRecovered”. However, this doesn’t mean we want to stay ‘unwell’ or ‘ill’ (whatever that means), but that we reject this new neoliberal intrusion on the word ‘recovery’ that has been redefined, and taken over by marketisation, language, techniques and outcomes.

We recognise that the growing development of MH ‘Recovery’ in UK/US, during the past decade or so has been corrupted by neoliberalism and capitalism is the crisis!. Some of us will never feel “Recovered” living under these intolerable and inhumane social pressures.

We believe that there are core principles of ‘recovery’ that are worth saving, and that the colonisation of ‘recovery’ undermines those principles, which have hitherto championed autonomy and self-determination. These principles cannot be found in a one size fits all technique, or calibrated by an outcome measure.

We ask that mental health services should never put anyone under any pressure to ‘recover’, by over emphasising or even imposing ‘Recovery Stars’ or WRAP’s. We stand opposed to mental health services using ‘recovery’ ideology as a means of masking greater coercion.

Recovery In The Bin’s 20 Key Principles can be found here.

Recovery In The Bin Group is non-religious, and unassociated/unaffiliated to any mental health organisation. We’d like to keep it that way…"

https://recoveryinthebin.org/

Narrative Notes ... from 2012

Recently when tidying up my resources, I came across some notes I made at some narrative training at the Dulwich Centre a couple of years ago. I believe that I intended to print these out and keep them close by in practice. I'd like to share some of my notes:

• Active listening is not enough: move people to places of change and be accountable.
• Discover what is not known and familiar.
• The ideas of "norms" can be diminishing: who established them anyway?
• Consider the politics of people's lives: culture, gender, class... away from the individual.
• A good story is about a number of events strung together over time.
• Research different stories other than the dominant story.
• Look at "the problem" rather than be defined by /as "the problem."
• Relationships are multi-storied.
• When people come to us "in consultation," they come with or are accompanied by problem-saturated stories.
• Be a supportive audience rather than empathic.
• Empathic responses come from "the expert."
• Be invitational rather than interpretive.
• Be curious & inquisitive!