Tag Archives: Healing writing

End of Life Nursing

This is a follow up post about an important aspect of life. Death is inevitable – none of us will escape it. How we end our lives is important, not only to us but to our families and that may mean having a palliative care nurse help us on our journey. Palliative Care is not about dying but about living with a serious
illness. Dr Susan Bardy’s books Caring vs Curing and Choosing End of Life Nursing deal with this often buried subject and I have posted her words below.

Dr Susan Bardy, RN (Ret), PhD (UniSA)

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My background in palliative care consists of 22 years active clinical
work in the Mary Potter Hospice at Calvary Hospital, North Adelaide.

After a long, nearly fulltime employment as a registered nurse, I
attended university, graduating with two degrees that led to ongoing
postgraduate work.

After retiring in 2006 I concentrated on completing a
PhD in the area of palliative care. I have enjoyed being a full member of
the Palliative Care Council SA for its entire existence, and have followed its
progress during my clinical years.

After graduating with a doctoral degree I offered to be involved with the
workings of the Council in a voluntary role. The result is speaking
engagements representing what is now called Palliative Care South
Australia Inc, which is headed by Tracy Watters as CEO and Dr Mary
Brooksbank as President.

Palliative Care is my passion that did not diminish after leaving clinical
practice. By choice I was a bedside clinician, which I think is easily the
most satisfying role that a nurse can take on. Now meeting people in the
community my main objective in talking about Palliative Care (PC) is to
reassure them that PC is not about dying but about living with a serious
illness.

Many illnesses, such as many cancers, heart disease, multiple sclerosis, motor neuron and Parkinson’s diseases can become chronic.  Palliative care offers a complimentary caring model alongside traditional medical involvement.
Palliative carers concentrate on making possible quality living with an
illness that often takes some time before it becomes life threatening.

Palliative care of the disease is effective by offering comfort measures. These
include emotional support, dietary advice, physical exercise or even
beauty advice for women. And all this while active treatment is still in
progress. The whole family unit feels the benefit by becoming familiar at an
early stage with the philosophy of Palliative care.

Later, when eventual deterioration of the sick person comes to pass, as it
inevitably will, this type of care will be acknowledged as a treatment
component of the actual disease. The extended family then will readily
accept the support of this specialty. Death is inevitable – none of us will
escape it. Ending life with a terminal illness is a slow lonely process.

My research addressed the question of why some nurses chose to work in the
field of palliative care. I am one who willingly stepped into the role of being
with patients at their most vulnerable time – when diagnosed with an illness
that eventually becomes life ending.

My studies reflected on the role of the Palliative Care nurse. My doctoral research question asked how and why my nursing transformation came about. What was it that influenced me to move from a curing model to comfort caring only?

My motherʼs unexpected death with cancer was responsible for showing
the way. She died in the hospice unit of the hospital where I was employed.
Sitting by her side showed me another aspect of nursing that attracted me to
a career change. I transferred to the Hospice after mother died and
remained there for twenty years. Acute care of patients taught me much
about nursing but did not satisfy my wish to give effective personalised
patient care. It seemed that there was never enough time for the often distressed
patient.

Hospice nursing was different. There, arranging a pillow and moistening a dry lip was one of the most significant care issues. Working in the hospice I learnt to
embrace notions of clinical competence, a sense of calling, compassion, empathy, and comfort with death and personal mortality.

In the hospice I experienced the power of interpretation that holistic care
brings into play and is at the heart of the palliative approach. Coming from
acute clinical nursing I stopped and asked myself what was it that I
brought with me to the care of dying people. The research had a number of
the answers, and in the meaning making process I was joined by a
group of palliative care nurses. They helped me to explore the coming to,
and being effective in, a care model that does not have an expected
positive outcome.

Findings of my study presented attributes that best describe palliative
care nursesʼ qualities, and that are essential building blocks of nursing
patients with time-limiting illnesses. These qualities are in part innate and
personal but a number of the following attributes are acquired by experience
at the bedside of sick patients. I find them valid and a true picture of my
and colleagues experiences:
1. Comfort with death and dying
2. Comfort with personal mortality
3. Intensive caring
4. Companionship with suffering
5. Emotional strength
6. Non-judgmental understanding

In essence, the principle dynamics affecting nurses to take on palliative
care is that often they are not comfortable with the disregard some
general nursing practitioners for the holistic care of patients with life-limiting
illnesses. This was demonstrated by interview results where a number
nurses spoke of the way they felt extremely comfortable in hospice units
where there was time for whole person care of their patients.

What now?

After my many years of practice across the nursing profession, my
wish now is to be in the community. I wish to share my knowledge and
practical experience by comfortably speaking of palliative care as a branch
of health care that is there to give a helping hand to people with serious
health problems.

I am grateful to Palliative Care South Australia Inc. who gave me the
opportunity to join in being a frontline promoter of an important health caring
model.

The next World Hospice and Palliative Care Day is on October 8th 2016

waratah

Christmas: remembering fascinating family characters

Christmas is a time to remember the past and to dream for the future.

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Tinsel is hung, solar lights flicker and laser lights dance on the water. Christmas has come to the Tidal Canals and we are celebrating another year of sun, sand, great neighbours and good cheer.

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Today we drove past our old house in Edithvale and delighted in the changes that have taken place over the years. Opposite was Ma and Pop Whitting’s home and I couldn’t help smiling at my memories of Pop.

My dad was an engineer and pedantic about everything being correctly measured and assembled with care and attention to the finest detail. Pop Whitting used to drive him mad. Pop was a cockney lad  from England and near enough was good enough. I remember the day he decided that the refrigerator in the kitchen was taking up too much room so he grabbed a saw, and cut up the left side of the wall beside the refrigerator, across the top and down the other side. He then shoved the refrigerator back level with the kitchen wall. Brooms, pans and a mop went flying out of the broom cupboard in the laundry behind the refrigerator.

‘Where will I put my brooms?’ Ma cried.     ‘You’ll find somewhere,’ Pop replied. ‘At least you now have more room in the kitchen.’ I’ll never know how he managed to miss cutting the electrical wires inside the broom cupboard . Sheer good luck, I guess. To cover the jagged edges of the sawn kitchen plaster he simply tacked a wooden strapping edge around the fridge  and painted it the same colour as the walls. I’d love to go into the house one day just to see if the refrigerator is still recessed into the laundry cupboard.

Pop was an original, a one off character who lived off his wits. When he was eighty he decided one afternoon to climb a ladder and paint the guttering. No preparation, just slap on as much paint as possible to cover any dirt. He happily painted a section of the gutter before deciding it was time for a cup of tea. Balancing the nearly full open paint tin on top of the ladder he proceeded to climb down. On reaching the bottom rung he looked up in time to see the tin of paint spill all over him. Thank goodness he was wearing glasses because it covered him from his bald head to the tops of his shoes. Instead of standing still, he yelled ‘Ma’ and proceeded to slosh down the side way, around the back of the house and into the kitchen leaving a trail of white paint behind him. It was left to Ma to clean up and the rest of the guttering was never painted.

My dad, on hearing the news shook his head and said, ‘You mean he didn’t even sandpaper the guttering before he started?’

Family characters. How they fill our memories and our hearts with love. 

Australian Christmas

Three and a Half Inches Behind

Be nice to your children, they choose your nursing home

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I was visiting a friend who has just moved into assisted care. This newly built aged care facility provides permanent care, dementia care, nursing services and palliative care and is a long way from the basic nursing homes my mother used to talk about. She believed the old saying, Be nice to your kids, they choose your nursing home.  

In the secure section’s tranquility room a small white haired woman snuggled under a soft covering watching laser light ‘stars’ dance on the ceiling. Bright eyes met mine and I sat beside her. She grabbed my hand and beamed at me. ‘Hello’, I said.’How are you?’

‘Three and a half inches behind’. I stroked her hand and spoke quietly for a while eventually saying, ‘I must go now. She patted my arm, ‘Three and a half inches behind’ she said with a smile. When I reached the door I heard a quiet, ‘I love you’.

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For twenty-five years I’ve been a research volunteer with Melbourne University’s Womens’ Healthy Aging Project and have learnt a lot about, menopause, H.R.T, post menopause and lately, dementia and Alzheimers.

According to the current literature Dementia, also known in my mother’s day as senility, is a broad category of brain diseases that cause long term and often gradual decrease in the ability to think and remember clearly . So much so that a person’s daily functioning is affected.  The most common affected areas include memory, visual-spatial, language, attention and problem solving. Most types of dementia are slow and progressive. By the time the person shows signs of the disease, the process in the brain has been happening for a long time. At the moment there is no cure. Globally, dementia affects thirty-six million people and is on the increase. More people are living longer and dementia is becoming more common in the population as a whole.

Senility has been around for a long time. My mother often told me that when she was eighteen she was sent to look after her Gran who was senile and needed constant care. It was a daily struggle just to get Gran dressed. After fighting with her to get some sort of clothes on, Mum would try to put on Gran’s leather buttoned boots. Gran would clench her teeth and plant her foot on the floor. They would struggle for about half an hour before Mum finally got the boots on and buttoned. Mum would give her grandmother a bag of tangled pieces of string for her to unravel. It kept her busy all day. At night Mum would mix them all up again and hand the bag back to Gran the next day.  Only when her Gran was dressed and occupied could Mum escape to do her own chores.

Not every dementia patient is as difficult as Gran. They can be as sweet and lovely as Three and a Half Inches Behind. WHAP research has found that the story of each patient recorded in a book assists people to  understand how to help dementia patients  live as calm and enjoyable a life as possible.

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The new three story building that is home to my friend houses elderly people with physical and mental problems and is better than any luxurious Retirement Village I’ve ever seen. Large private rooms with an en-suite, wide hallways, comfortable lounges with aquariums and electric fireplaces complete with realistic flame effect. Friendly, caring staff. These facilities are a far cry from the urine smelling shared rooms of the nursing homes of my mother’s day.

lounge dining hair

I remember sitting next to eighty year old friend, Mickey when we flew through a violent storm in a tiny eight seater plane. After a particularly loud boom of thunder, she bent forward, put her fingers in her ears, closed her eyes and muttered her mantra, ‘Never a nursing home, Never a nursing home.’ Mickey would not have such a fear of being sent to a home if she had seen one of these new Aged Care Facilities today.

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But to get into one of these top class aged care facilities is still a trauma and, if you cannot get a government funded place, can cost the earth. I don’t know what the answer is, but I am so happy for my friend. Her physical condition has improved since being there and her mind is still as sharp as a tack.

Friendships Between People Who Love The Same Books

There are no faster or firmer friendships than those between people who love the same books (Irving Stone)

My cousin Julie is part of my life, part of me.

For many years we have shared the trials, tribulations and joys of our lives, including books, quotations and inspirational verses. I pass on to her any that I enjoy and she does the same for me. Recently we have exchanged the Desiderata , The Rosie Project, Cleo, Tumbledown Manor and the complete book of Great Australian Women.  Last month she moved into assisted care and had to clear her unit.

She has passed on to me her most treasured books; prizes awarded when she attended Fintona Girls’ School many years ago. Books by Jane Austin, RD Blackmore and George Eliot. With love I have placed these new additions to my book ‘family’ amongst fellow companions and I will care for them, love them but most of all enjoy them and think of her whenever I do. They are here in my safekeeping. Hers to visit or take home whenever she likes. However, later they will be passed on with love to whoever needs them at that time and I will be guided as to who that is when that time comes

Julie used to teach piano and music is part of her life. When feeling blue, listening to classical CD’s always sooths her soul. Books to me are like her music to her. They are my Bach and Beethoven. Old friends who comfort, exhilarate and transport me into so many different worlds. I don’t sit and read line by line like Julie. I dip in, flick through, but always find what I need at that particular time. My books are not worthy tomes, they are about everyday life and are dog eared, preloved, tatty, often garage sale gleaned and anyone searching for first editions lined up in library neatness will be disappointed. I make no apology. From the crayon scrawled Dr Suesse to the thesis written in longhand on aboriginal children in schools during the last century thrown out by an uncaring family, to precious school awards, they are my treasures.

Often I find scraps of paper buried between the pages, such as ‘Live more in your heart and less in your head’ or ‘There are two dominant energies, love and fear and love conquers all’. Boring to some but often photocopied and sent with love to uplift others. These days I also find many inspirational verses on Facebook and love to see people sharing these treasures.

FRIENDS

Through laughter and light

And the dark soul of night.

Deep rooted as a tree.

Our mothers were cousins. They whispered together and walked hand in hand. Every Sunday, side by side, their voices soared in harmony. Handbags hanging, they linked arms and, with heads close together, magpie chattered, oblivious to the world. They laughed, cried, told jokes, criticised their husbands and praised their babies.

Julie was eight when I arrived.

Julie’s parents had elegant Christmas parties. I admired ruby glass from afar and ate jelly cakes and lamingtons, never spilling a crumb. Julie played Beethoven on the grand piano. I saw her wear dresses that with a tuck would be mine.

Julie went to college, studied at the Conservatorium and sang in the Sun Aria.  She whispered of love. Her family disapproved but she married her ‘commoner’. I saw her look of defiance and the family’s look of defeat.

We  met weekly in the Botanic Gardens where we laughed, cried, told jokes, and tended our babies.

The battered doll is bruised to the core

Convinced no one will love her any more.

 Julie grabbed her music, called a taxi and fled to a flat.

Julie lies quietly in the hospital bed.  ‘The cancer operation will be a success,’ she says.  I lie beside her, our heads touching. We sip Chardonnay in elegant glasses hoping the nurses will leave us alone. We talk for hours until the late bell tolls and I train home filled with courage.

Julie is fighting. She has chemotherapy, loses her hair. We sit in cheery waiting rooms amongst smiling faces beaming love to anyone near.  Life seems precious and eggshell fragile as we talk with others of hopes and plans.  ‘I will beat this,’ she says.  ‘I will be well.’ Seeing her confidence I also believe.

Julie cuts her hair, rents and laughs at her family. “They tell me I must save for my old age,” she says.  She travels to Assisi convinced she is cured.  Sits six hours on top of her luggage at Calcutta station talking to soldiers.  Lives in an Ashram where she silently peels vegetables, takes cold showers, swirls in dervishes.  She lives in her tracksuit. “But where is the love,” she cries as she travels to England, Austria, America and Italy. “Where is the peace in the world?”

Julie is happy. She sits in Yoga lotus when we talk on the phone.

Meditates in her special place, mentally cleansing her body and soul.  I see her graduate as a Yoga teacher, write a book Love and Light and help others through cancer and HIV Aids.

One night, we light a candle, sit cross-legged on the floor our hearts soaring with symphonies and talk about Chin Maya, Satyananda yoga, her Swami, our angels, our chakras, our energy. “Live now,” she cries.  We discuss  life, love, miracles and healing and…

Through love and light

Soul mates set free.

Deep rooted as a tree.

‘What does she mean to you’  is asked of me

Writing from Mourning

The dead leave us starving with mouths full of love. (Michaels 1997: 20)

Much of my writing is autobiographically based. Pickle to Pie, although published as a novel was based on my father’s life. This second book is about my thirty-five year pen-friendship with an older American poet. I was three quarters through writing our story when Mickey died.

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My writer’s journal remained closed; the novel frozen. How to write the unsayable—to write through silence into a safe space? My mediated text, balanced between fact and fiction, meant that half of my writing was in the real world. I was telling another woman’s story as well as my own. I had worked through many writing issues, and told numerous stories of literary and personal goals, but I came full circle when faced with Mickey’s death. At the heart of the novel were two real women. Now, one was lost and I was grieving.

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I am a writer and writing is the way I make sense of the world. Therefore I could not understand my inability to write. Mickey’s death was not my first introduction to grief. I had grieved for aunts, uncles and close friends, and the ultimate orphaning loss of both parents. During those difficult times, writing had been my salvation.

I write because then I do not have to speak. I write with the colours of memory. I write because I believe it can create a path in the darkness. So why was I suffering from writer’s block? Because, when Mickey died I was in the middle of writing a fictionalised account of our friendship. I was immersed in the autoethnographic exploration of the memories encompassing both of our lives. This grief was different from any others I had experienced. As Didion reveals in The Year of Magical Thinking (2005) each individual grief is ‘a place none of us know until it happens’ (Didion 2005: 188). T

The voices of others. ‘She was ninety-three years old’. ‘She had a long life’. ‘She didn’t suffer’. ‘You’re still upset?’ ‘Get over it’. ‘Move on’. ‘Mickey who?’ (Journal 4 2010: 126)

Before I could bring myself to write, however, I had to come to terms with my recent loss. Over ninety years old, recently hospitalised, Mickey had refused to eat; she had willed herself to die. I found this out by chance a week after she had died and my creative drive faltered. There was no funeral to attend nor a healing ceremony, just a hole that could not be filled. I gathered black around me and grieved.

I returned to my journal. When I did not want to write, when I was feeling brain-dead, writing about the ordinariness of life without sorting, sifting, editing, connected me with the living and with the dead (Adams 1998: 4). It created a place to be in ordinary conversation with anyone—from myself to my old penfriend. It connected me to Virginia Woolf, Elizabeth Jolley, Margaret Atwood and Margaretta Jolly. I could smell, see, touch and taste the story waiting for its ending. T

he earphones hurt my ears and my fingers tremble as I turn on the tape recorder. Mickey’s highly opinionated deep voice permeates my being. Informal conversations we had in 2002. There are so few. When the tape recorder was on, she rarely wanted to talk, and the best conversations were when I turned it off. For me, it is the sound of her strong, opinionated voice that is important. It triggers deep emotions. I must believe the writing will come to life in her voice. Not mine. Yet woven within the writing is my story. Mickey and I in context with history, revealed via my recollections. (Journal 4 2010: 233)

Life is a tapestry and death leaves a hole. I looked at the empty space and realised I had never willingly allowed any empty spaces in my life. Life had been about hanging on to what you had. Anything I had ever let go had claw marks on it. Yet this empty space was different. With wonder, I began to see it as a creative space, an opportunity to move on through the process of creating (Riggs 2007). It became filled with possibilities. I began to weave the tapestry bigger so the hole was less obvious. Writing the ending to the story allowed me to make visible the size and shape of my grief and through language I could give substance to Mickey.

In May, in water-cooler conversation with another PhD candidate, for the first time I talked about Martha the character in the novel and thought of her as Martha, not Mickey. At that point I realised that a huge shift had taken place: a distancing.

There is a break between friend and character. I can write Martha, talk about Martha, think Martha and keep Mickey, friend and mentor safely tucked in my heart. I’m remembering the woman and writing the character (Journal 5 2011: 29)

But was I writing from an idealised memory of Mickey? Had my grief and mourning turned the novel into a representation of somebody perfect and had I ignored imperfections? ‘Hens Lay, People Lie’ was once again in danger of becoming a hymn of praise—until I remembered Mickey’s opinionated honesty. The character Martha now strides through the pages of the novel warts and all.

A motivating factor in my decision to include Mickey’s death within the novel was the belief that writing about my own experience would not only create a way through grief for me, but would also enable other bereaved writers to ‘witness the experience of reconstructing [their] own map’ (Frank 1997: 17) for writing from mourning. Louise DeSalvo’s writing (1999: 206) reinforced my belief that my story would help others to cope with grief and mourning. It was emotionally challenging to follow Caroline Ellis and the other exponents of emotive autoethnography, and reveal a vulnerable self. Whenever I wavered I thought of Hélène Cixous, Virginia Woolf and Laurel Richardson.

To me my texts are elements of a whole which interweaves my own story, are the seasons, days in the Great Year of my life. (Cixous 1994: xv)

Writing is what I do, in spite of the problems. What I had to reclaim was the sheer joy of writing; the intimate relationship between me and the page. Through this practice I hold communion with my deepest self. I did not want to bury Mickey or to praise her, but ‘…to exalt her exceptional contribution to my own happiness and belief in the worthiness of life itself by the testimony of her own’ (Barthes 2010: 260). Perhaps this is the gift of every daughter—even a proxy one. The blackness of loss and grief woven through the text added depth to the colours already woven through the story.

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I have always wanted wings. To fly where I belong, to become who I am…winged and moon-swayed. (Griffiths 2011: 3)

Ultimately I learnt to trust myself and find my own safe space to write from mourning. On my magic carpet I let my imagination soar—to follow Jay Griffiths and fly to the moon, to live in my imagination, to experiment with plot and characters, to swoop and fly and write from multiple stray moons.

Morning sun gilds the topmost leaves of the melaleuca gums. I drag my kayak out onto the lake. Suspended between water and sky, my oar dips into reflected clouds. Between two worlds I find the end to our story. (Journal 5 2012: 233)