Teenage Years

Upon reflection, I wasn’t aware that I was being raised within a ‘death positive’ and ‘story-telling’ family and community. Nor was I aware that the learnings from early childhood were the foundation that I would continue to learn from, and build on, as I travelled along my own journey, creating my own stories and sharing those of family and friends that left their footprint on my soul during their time on earth.

My first personal story commences in 1979, the year we moved to Brisbane, and within 8 months of starting studies in a new State High school. At 14 years old, in Term 3, I lost all sensation and control of movement in both my legs due to severe swelling and trauma to my lumbar spine within 24 hours of having an art stool pulled away from underneath me as a school prank, The classroom bully got her laugh, I got a diagnosed with possible spinal paralysis. Recovery from the injury required 8-weeks away from school, being bed-bound 24/7 with all movement restricted except for holding school books to study. Not wanting to fall behind my Year 10 studies, my mother advocated for the High School and Education Board to supervise home-based verbal examinations for Term 3. This was my first experience in navigating complex Government systems and witnessing the power of advocacy. Following 3-months of intensive physiotherapy, I not only avoided any permanent spinal damage, I graduated from Year 10 with High Distinctions.

“Life is what happens to us while we are busy making other plans”

Readers Digest edition, 1957.

Determined to move forward from that experience, I completed a Diploma in Administration Studies that following year and commenced working full-time at 15 years old. I was fortunate to genuinely love my work and enjoyed making new friends and building a fresh start. For the following 6-years I remained active, healthy and happy; though it seemed to me that ‘death’ hung around my village of friend and family like an univited visitor.

At 16 years old, I had sat in a hospital room with my cousin who had just one hour previously died from a brain  aneurysm. I recall feeling honoured to be holding space with his wife of many years, and later being a support to his son through the sudden death of his father. My life and death lessons continued through my teenage years to came to be via 

• a gunshot misfire killing my 15-year friend during a hunting trip
• my 16-year cousin returning from Surf Life Saving being killed a drunk driver
• a special little girl aged 4-years old run down in her front yard at 8.00 am in the morning by a speeding driver
• supporting a friend and colleague through a natural miscarriage of her 20-week pregnancy in a work bathroom, and
• having to say farewell to 4 beautiful individuals I called friends – two  who died as a result of contracting HIV AIDS, one by suicide and another by discrimination-fear lead violence.

Upon reaching my 21st birthday, I silently honoured the journey of those that had travelled through this world before me and taught me so much in such a short amount of time. Very conscious that death does not discriminate amongst the living – that dying can and does happen to anyone from the unborn to the very elderly.  I witnessed the shock, fear, grief, gut-wrenching decisions, confusion, overwhelm; and the regret of words left unsaid, actions left undone and conversations on personal wishes and preferences left unspoken of their loved ones left behind to survive the loss.

My 21st birthday promise to myself was to remember those who have departed and ensure I live my best life every day..believing I could be prepared for whatever came my way…continued

Surviving the ‘speed bumps’ 

Feeling young, healthy and filled with gratitude and an appreciation of living my best life, at 21 years of age I was ready for whatever may came my way… At least, that’s how I felt until I turned 22 years old when a new opportunity presented itself to  learn so much more about myself, life and death (It’s a long story and you may want to take a short break here, grab a cuppa, and make yourself comfortable.)

“Whatever makes you uncomfortable is your biggest opportunity for growth”

Bryant McGill

At the age of 22 years old during an inital consultation by a general surgeon, an enlarged growth in my lymph node along the left side of my neck was confidently diagnosed as an advanced life-limiting disease – known now as Hodgkin’s lymphoma. So confident was the surgeon of his diagnoses, he casually remarked “it’s a shame this happens to someone as young as you, just last month a 23-year patient died with the same cause”, followed by “if we’d caught yours earlier you may have had closer to five years”.

I exited his consultation room, alone, and feeling numbed by the shock diagnosis. The only reference point I had to the disease up to that point was that a family friend had battled it for a few years, until he died at a young age.

Living with my family at the time, on my way home I made the personal decision not to share the diagnosis immediately. I believed I was protecting my family and friends, as I had witnessed parents grieving for their children. Convinced my parents would feel more afraid for me and shocked at the news, than I did for myself – I decided to wait until the removal of the mass which was booked for 14 days later, and receive the official result. (At the time I thought I was being brave, now I acknowledge it was a reaction out of fear and denial)

The two weeks that followed were uncomfortable and long. Not simply because I was trying to come to terms with my life-limiting diagnosis in silence; but not being open and honest with my family became very stressful. The strain surfaced in areas I hadn’t expected – I couldn’t look at my parents directly, I couldn’t share the same room with my family comfortably, I spoke less and avoided being at home. I stayed at work longer, burying my head in my work until the day of my surgery and I would receive my official confirmation.

Little did I know that a whole new adventure was waiting for me:

During the surgery I experienced a near death experience (NDE) as a result of my sudden death, and resuscitation, on the operation table due to an overdose of anaesthesia. It took me a long while to embrace the NDE with all my body, mind and soul, and even longer to find the words that describe the experience and communicate it with family and friends. At the time this beautiful experience was amongst the mix of so many unexpected and unplanned events, that for many months I remained in a state of shock, confusion, fear and personal growth.

No Apologies. Pushing On.

Firstly, let me share, the Pathology result I received 3 days after the surgery advised my growth was NEGATIVE to Hodgkin’s Lymphia. Other than a flippant comment made by the surgeon that “sometimes it turns out not to be”, I was sent on my way with no apology for the mis-diagnoses.

That day I excitedly told my parents the result was negative, and before I could continue – to my complete surprise and shock- my mother burst into tears of relief, saying she been deeply stressed this whole time that my growth would be Hodgkin’s disease but that she didn’t say anything to me because she didn’t want to worry me before I received an official result. She never imagined a surgeon would have told a 22-year-old what they were testing for, never mind deliver a (mis) diagnoses before the growth was tested. She went on to say she was relieved that I had spent so much time at work because she felt terrible knowing what she was thinking but not sharing it with me. We laughed and cried in the moment and promised never to withhold a death and dying conversation out of fear or a desire to protect myself or someone else. That moment was as life-changing for me as the near-death experience – and one that gave me the strength to deal with what was to follow, then, and into the future.

I recall death and dying conversations,  including their end-of-life care preferences a

I was to discover six-months after my official mis-diagnosis, that at the time of the surgical removal of the growth and lymph nodes; the surgeon had removed my spinal accessory nerve. The error wasn’t the surgicial removal and damage to the nerves (this can occur where the mass is so large) – the error was the surgeon’s failure to contact me and repair the damage immediately upon advice of the Pathology report received within 48 hours of the surgery, advising a negative result and that a repair of the damage caused to my accessory nerve required urgent and immediate repair.

Aware there was ‘something not quite right’ within days and week’s following the surgery, I returned to the surgeon on two occasions only to be told I was experiencing the effects of being ‘manhandled’ on the surgical table, and that I had to be ‘careful not to become addicted to ‘wrapping myself in cotton wool’.

Six months later, the damage had resulted in severe deterioration of brain and memory function, degeneration of my trapezius and sternomastoid muscle and paralysis of my left side of the body being unable to use my lift my left arm and shoulder, hold my head straight and walk without spinal pain. 

Unable to imdependantly care for myself  and complete simple acitivites and chores, I  visited and sought consultation with more than 30 professional medical and allied health providers  before it was discovered by a neurosurgical specialist team that the damaged originated from the removal of my lymph nodes and that it was confirmed by Head of Queensland Pathology that the damage was been reported to the surgeon and the repair advised within the original pathology report.

Following further testing and consultations, it was concluded by the neurosurgical team that the damage may be too extensive to consider surgical repair. Instead, their advice was for me to prepare to live a life in a wheelchair by the age of 25 years old, with an offer that they would help me come to terms with my change of circumstances.  Their collective diagnosis was that my physical deterioration would degenrate and would result in me never walking again, never working again, not being able to carry a pregancy and unable to complete domestic duties.

Following their consultation, I was both sorry for myself…and angry… would I accept the decision or advocate for myself and the life I wanted to live…

Advocacy…my voice, my life

This time around, I did not stay quiet, nor did I passively accept the diagnosis unquestionably. I wasn’t shaken, I was stirred to challenge the diagnoses as inevitable. I wasn’t afraid of living life in a wheelchair, or never cleaning house again – I was terrified of not trying to do all I could in case there was a possibility that I could walk and work again, and have children if I chose to. This time, I didn’t feel sorry for myself, instead I gave myself compassion. I also gave myself permission to be angry at the ‘system’ and to give it my best fight..

I was open and honest with my family and friends. I also shared my story with the Royal College of Surgeons, the Australian Medical Association, and sought legal advice. At 23 years old I quickly developed strong advocacy skills, learned how to navigate the complex medical systems and legal legislations and developed my knowledge through research and negotiated with with personal in the medical, legal, and Unviersity sectors.

An exhausting 3-weeks later, with the assistance of the Australian Medical Association and agreement with a Senior neurosurgical team, I underwent extensive neurosurgery repair (which had an initial predective success rate of less than 10%), transplanting my sensory nerve from my left foot into my neck, in the hope that the accessory nerve endings would ultimately reconnect over time. At a growth rate for nerve repair being approximately 1mm a day, my commitment to the specialist team was that I would stop working and limit all activity that could risk the repair from tear or damage for a minimum of two years, possibly 3 years. That I would attend physiotherapy sessions every day for the first 12-months. And that I would commit to completing two x 1 hour’s rehabilitation sessions every day for the following 18-24 months.

We each kept our promises, and I returned to full-time employment within 2 ½ years of the surgery with medical clearance.

It did however, take a further 4 years to navigate the complex and costly legal system to settle the Supreme Court case against the original surgeon where minimum dames and expenses were awarded.

More than 35 years on, I remain committed to advocating for the right of all vulnerable and disadvantaged individuals to have the opportunity to live their best life  everyday, and  for their right to be given all options to make their own personal decisions.

Living in the – Dash –

Throughout my 30’s, ’40s and into my 50’s the opportunity to support individuals and families through their personal journey following a life-limiting diagnosis, terminal illness, accident, injury, mental health or sudden death continued. It  was always an honour to be invited into their circle of trust. Utilising the experiences I had gained throughout my own challenges in my 20’s, my LifeLine counselling training, knowledge of community services and the skills developed throughout my professional employment; it was always a privilege to provide personal, emotional, physical, practical and spiritual support as required.  As well as assist family and friends conduct general research to give them informed options and non-medical information; organise end-of-life planning including dvance health care directives; navigate them through the complexities of the medical, coroner, legal, financial systems and funeral planning in-line with their religious or spiritual beliefs; advocate on their behalf if they experienced bias, judgement or discrimination or lacked the confidence to communicate their wishes to their care professionals; and assist them with downsizing, decluttering, legacy planning, memorial video making and funeral planning.

With each new experience, I found myself able to accept the challenges that were yet to be presented. For example, the sudden death of a friend, David, in a motorcycle and truck collison in my 20’s in which I supported his wife and family through the funeral planning, road accident investigation. That experience prepared me some way with the grieving stages and required resilience I needed in my 30’s to accept the death of my closest friend and flatmate, Angela, whilst l lived in London, UK.  Angela  was crushed by a London underground train on Christmas Eve due to mis-adventure.  She had been born in London, raised within her parent’s Indian culture and was 26 years old at the time of her death. Her distressed parents nominated me as their family representative for the hospital, police, London understand transport unit and Coroner, funeral home, workplace and legal affairs.  Arranging a cultural funeral, supporting her wide circle of grieving family and friends, clearing her belongings from our rented home after flat-mating for  2 years, and finalizing her Estate and legal affairs without a Will or advance planning documentation in place  gave me a deep insight into the importance of generating death and dying conversations with family regardless of age and helath status. 

My experience with Angela’s death also gave me the emotional resources to accept the death of my father, Joe, in 2011 from a degenerative heart condition, and allowed me to  undertake the same support role within my grieving family. 

However, as my family had held death and dying conversations, and my father had all his advance care planning documentation in order – the burden of the decision making during difficult and emoptional times were removed – a true gift for me mother and my family.

In my 40’s my father was diagnosed with life-limiting kidney disease and a degenerative heart condition in 2004 with a prognosis from his specialist that he had a maximum of 6-months to live. Our family, relatives and friends had the privilege of having dad/nonno/Joe in our lives for the next 6 1/2 years. During this time my mother was his primary carer and without being aware of it – she was his Doula…

Carer Experience

 

My mother, Ida, was a proud, resilient, pragmatic and emotionally intelligent woman who lived a life of service from the age of 5. Without being aware until recently, throughout my life I witnessed her ‘doula’ family and friends from diagnoses, hold vigil and honour their death process; as well as support those grieving the sudden loss of a loved one. She provided support intuitively, without being intrusive; and being bi-lingual, she assisted many individuals navigate medical, funeral, legal and estate planning arrangements.

Her greatest love of all was my father, Joe.  She was happy to commit to caring for my father, Joe, throughout his final 6.5 earthly years whilst he lived with life-ending renal failure and degenerate coronary disease.

Her personal end-of-life journey is a long one, and one I have disclosed with permission from my siblings.  I do so in the hope that if you are currently caring for someone you love and who loves you back – that you gain an understanding that I really do have an insight of the range of emotions and challenges you may be experiencing on a day-to-day basis.  Our stories may differ in some areas, but what remains consistent, is an understanding that to care for someone can involve many different emotions but when undertaken with support, can be the special gift that you give to eachother…

In March 2014, as a result of a negative reaction to a medication provided to her by her GP, mum transitioned from a woman living independently in her own home to an intensive care patient with multiple organ failure, and cognitive fragility. Overnight she became a haemodialysis patient due to renal failure.

Upon her unexpected admission into the ICU the family were extremely grateful that she held an official Advance Care Directive stating her wishes; and an Enduring Power of Attorney authorising us to make medical and financial decisions on her behalf. We understood our responsibility was to adhere to her Directive and personal wishes.

Having more flexibility in my workplace than my siblings, I nominated to take leave to be with our mother during visits by her medical team and during mealtimes Monday to Friday. By default, I become the primary contact person/carer for her medical and allied health providers; and was responsible for posting updates to her  ‘village of family and friends’ via social media.

Following 21 days in intensive care and a further few weeks in the acute care ward her cognitive ability returned though physically she remained weakened.  Her medical team advised transition to an aged care facility was her only residential option upon discharge – independent living or supported home care would not be open to her. We were given 3 days by the hospital to transition her into an aged care facility. Having met that challenge, next was the need to prepare her family home of almost 40 years for sale within 30 days to pay the Aged Care Residency Bond.

During this time I had returned to work, though I remained her primary contact/carer and continued to communicate with her clinical, medical and aged care service provides, co-ordinate the transportation to and from the Dialysis Clinic; as well as maintain social media updates on mum’s status to her ‘village of family and friends’.

Individually, and collectively as a family, we were emotionally and physically raw and exhausted at this stage. We were also unprepared by how mum’s new reality affected some of her relatives and friends individually.

A couple of them became depressed by mum’s change of health status and transition into aged care, others found her new reality very difficult to accept or acknowledge. For others it either raised in them fears of their own mortality, fed into their negative perception of aged care homes (a place people go to die), or raised fears of possible elder abuse by children who ‘sold her family home’ and ‘put their parent away’. 

After overhearing one such conversation between my mother and her good friend, I heard mum state “Get a grip… I’m selling my house to be cared for by trained medical professionals around the clock…you know my kids as well as I do…they’ll always have my back…” .

This highlighted to me the need for education and awareness within a culturally diverse community to understand living with an end-of-life diagnosis, how to transition from independent living, and how to plan for the journey that dying will take us each of us.

On that day, I fully committed to continue as mum’s primary carer and contact person whilst being fully supported by my three siblings.  Each on of us had a role in caring for mum and ensuring she lived her best day, every day.

Mum settled into aged care gracefully and embraced her new environment. After her first 18-months, she experienced a stroke affecting her muscle strength further – she now required the aid of a mobility walker. Further tests indicated that she had being experiencing multiple very small strokes for many years which had gone undetected, and that she had a 5cm slow growing brain tumour that was progressively deteriorating her brain matter.

She didn’t allow these results to affect her outlook and continued to make the effort to live one good day at a time.  In 2017, she experienced a 2nd significant stroke which resulted in her becoming wheelchair dependent for her mobility and further losing upper body strength. Her cognitive ability and faith remained strong.   She received a lot of joy through becoming a great grandmother three times over across the next two years. 

In October 2019, mum again experienced a small-medium size stroke, followed by  a chest infection and accumulation of fluid on the lungs. This was the beginning of a 5 ½ month hospitalization stay for her that included multiple intravenous antibiotic treatments, several tubual insertions, pleural effusions, lung surgery and attempts at rehabilitation until spinal fractures were detected as result of advanced Renal osteodystrophy, a bone disease common for people with chronic kidney failure.

During this hospitalisation mum’s cognitive ability would decline and return in stages between treatments and surgeries; she stopped enjoying food and began requiring supplements for her nutrition, her weight loss was progressive, her muscles significantly weakened. She experienced excessive fatigue and increased sleep patterns.  Prior to being discharged she developed rectal bleeding issues and the beginning of incontinence.

Her lead specialist did not officially deem her to be in the active dying stage, nor was mum in a coma or being sustained by a life support system; therefore the Advance Health Care Directive was not actioned, and her medical team continued to allow mum to have a say in her general health care decisions, together with her family.

As time went on, the family would discuss with mum that she was living below the line she had previously considered having a quality of life.  Her auto-response was ‘I’d like to live a little longer’.  The family consented to taking her lead in her care decisions.

The decision that mum participate in her care decisions at that stage was very challenging for me. It simply did not fit her prior wishes and I wondered if I was letting her down. My compromise with the situation was that mum’s cognitive decline was affecting her immediate short-term recall only, which allowed her to be present to each of us in that space. There were many days she was awake enough to hold a small conversation, and when she did it was grounded in reality. She continued to have compassion for others and show gratitude for those around her. She never complained nor showed signs of distress, and she was receiving a lot of joy from her visitors – particularly from her grandchildren and great-grand babies who would spend hours with her during each visit. Memories were being created…

Discharge from hospital was in February 2020 with the fluid, infection and bleeding under control; though physically bed-bound, cognitively weaker, dependent on nutritional supplements, incontinent and with spinal fractures which were unable to be treated other than pain managed.

Unfortunately, COVID19 locked down her aged care home in March 2020. Our family communications were mostly via phone, and occasionally via facetime for the grand babies.

I requested updates throughout the long lockdown from the nursing and clinical staff, each time being told she was ‘OK’.   

As time passed her communication level appeared to be declining though it wasn’t until lockdown lifted in late June 2020 – the reality of her condition unfolded to us. She was experiencing more involuntary sleeps, periods of confusion and disorientation upon waking or when tired, she had dis-engaged socially from the staff during lockdown and had no interest in the TV being on or in having background noise. She was able to maintain limited phone communication with her family and friends and engage with visitors for short periods only – though she continued to beam happiness at the mention or sight of her great grand babies.

That very week, I called a meeting between her medical team and support staff, and it was agreed mum would not undergo any further hospitalisation treatment, medical testing or receive CPR, additional life-saving intervention or intravenous treatment. She would continue dialysis treatments, general medication and her nutritional intake. Mum stabilised to her new ‘normal’ for the next 3-4 weeks – at this time the aged care home was again in COVID19 lockdown.

During this 2^nd lockdown, mum answered the phone less and less and I started receiving calls that she was progressively refusing medications, baths, therapy and sleeping more than usual. Not being permitted to visit her, I remained in communication with her visiting doctor, Dialysis Clinic Manager and the residential Care Manger relying on them to maintain mum’s care and implement her personal directive to stop dialysis due to a quality of life..They did not.

Lock down was lifted in August and despite her happy disposition and huge smile at seeing us in-person, mum’s degeneration was painfully obvious to each of her family. We instructed the Metro South Palliative Care Team be engaged to prepare for managing mum’s pain and comfort levels as we believed we were witnessing the dying stage. Again, no medical or nursing staff spoke to us in regards to the dying process.  Mum was assessed by the Palliative Care Team within days, however on the Friday of the same week, the Government again shut down aged care facilities, with no visitors allowed. That weekend, myself and my siblings made the decision that mums prior health wishes were to be honoured.

I contacted her Renal Specialist in the morning, Monday 17 August, and the decision to terminate dialysis immediately was mutually agreed. With mum officially declared end-of-life, the family were permitted to visit her, two at a time and around approved visiting times.

This allowed her to remain in her own room that she called home for 6.5 years. Family members visited her in her own environment.  She was comforted by the familiar care staff and family photos that covered her walls.  She was able to admire a bunch of her favourite flowers, listen to a variety of her favourite music and relax with the sound of the bubbling brook flowing outside her balcony.

Her specific dementia protected her from being aware she was not receiving dialysis – she was excited by every visitor and showed appreciation for the time we spent with her. Though losing her voice and in and out of drowsiness, she made great efforts to hold conversations for the first few days, giving each of us the opportunity to leave nothing unsaid and have no regrets…

Her final words whispered to me were “thank you darling…I know you kids have my back”…

Having spent her last afternoon in the company with her only son, our mum/nonna released her final breath peacefully at 11.20pm in the evening on 1 September 2020.  In the arms of her daughters, and ‘Time to Say Goodbye’ playing in the background, we were honoured to witness a good death of a great lady. 

May she rest in peace alongside her ancestors and loved ones who have died before her.  It was an honour to support mum as she travelled her final journey through this lifetime by honouring her advance care planning directives and personal wishes.

 

 

Travelling My Path

I consider my first ‘work’ role to have commenced at the early age of nine (no child labour was involved). I chose to help on weekends and school holidays with farm work I could manage. My father was a fair man and paid me equal adult pay for any work I completed to the same standard. The opportunity to spend many years working with seasonal workers from diverse multicultural backgrounds developed my curiosity about human behaviour, cultural practices, life and death.

At the age of 15, one year after moving out of the county to Brisbane, I completed a Diploma of Business Administration before being employed by Education Queensland, South Brisbane TAFE. Operating out of Brisbane’s Old Town Hall, I joined a small team responsible for developing, implementing, and coordinating Adult Education classes across the Brisbane region. Working in conjunction with Education Queensland’s Aboriginal and Torres Strait Islanders Unit and Adult Literacy Unit for Migrants; I gained wide exposure to adult education and learning, adult literacy, English as a second language, cultural inclusion and practices, Government and community services, social justice practices, advocacy and negotiation. I remained employed with Education Queensland for almost 10 years.

In 1991, I moved residency to Wollongong, New South Wales, and enjoyed working for the next 6 ½ years in a National Health Insurance organisation for local, state, and Federal government employees. My roles included (Queensland) Client Service Team Manager, (National) Call Centre Manager and (Queensland) State Area Marketing Manager.

In 1997, at the age of 33, I decided to fulfil a long-held goal to live and work in Central London, United Kingdom (UK). For the next seven years, I based myself in London, worked full-time and travelled regularly exploring places and destinations, meeting people with diverse cultures, languages, beliefs, traditions, food, and diversity. I worked within various sectors including travel, technology and information, software, and engineering; and held Senior Executive, Senior Client Manager, Training, and System Analyst positions. My client base were blue-chip organisations and Fortune 500 companies located across the UK, Ireland, Europe, and the United States, as well Government organisations including monitoring contractual service level agreements and auditing quality control with UK’s Military Defence Force (Airforce | Amy | Naval | Diplomatic | Special Forces).

Returning to Australia in late 2002, I relocated close to my family in Southeast Queensland. For the following 18 years, until December 2020, I was employed full-time in the higher education sector across various Academic Administration and Student Business Services roles. These included Continuing Education and Program Manager; Non-Award and Enabling Program Manager, and University Admissions (Domestic) Officer – specialising in assessing eligibility for direct admission and providing pathways information assisting school leavers and the mature-aged to achieve their personal and academic goals.

Following the death of my mother in September 2020; and an accepting a voluntary redundancy offer from the university as a result of the COVID19 job cut requirements in the Higher Education sector in December 2020 –2021 bought with it a clean slate of opportunities and possibilities – Your Pathways Coach has been established from the ashes of 2020 and the accumulation of a lifetime’s lived and share experiences, employment and supporting an individual through their dying and death experiences.