Monthly Archives: November 2016

In losing our memories, do we lose what makes us human?

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This quote was shared today;

 There is one thing that Alzheimer’s cannot take away, and that is love. Love is not a memory it is a feeling that resides in your heart and your soul.

How I wish that this were true… How can someone love when they have no memory of their loved ones? For some, when the person with dementia (PWD) denies they have had a partner or a child – there is no one to be loved, that is the reality of their world.

We are the sum of our experiences. Memory is what makes us who we are, it governs how we react in certain circumstances.  Memories are not only singular there are shared community memories. Memories provide us with a common meeting point, learned behaviours and  understanding of the world we live in

While many with dementia are living meaningful lives we need to admit that in the final stages that these things happen. 

We must face the reality of what happens in order to process and deal with it. 

The PWD many be motoring along fine in their own world, and we should be grateful for that. But for those who love and have supported the PWD  we are already  mourning their loss, this is recognised and called ambiguous grieving.

http://www.whatsyourgrief.com/ambiguous-grief-grieving-someone-who-is-still-alive/

We will always love the PWD and remember for them, but it is a lonely walk.

Dementia will not rob me of my love for the one I love, but it may rob them of their love for me.

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Vegan or Vegetarian or Meat Eater

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This is something I have struggled with over the years. I am an off again on again vegetarian.  I rationalise it out

  • I don’t eat pork  …well – exception organic free range bacon – how can I give up my bacon  and some smoked ham  (see – already I am in trouble)
  • I do not eat veal at all and never have
  • I do not eat much beef –  grass fed no hormones locally butchered or fully organic when I can find it (in trouble again)
  • Lamb – rarely too expensive
  • Free range organic chickens mostly  .. except when I eat KFC  3 or 4 times a year ….

See how much I struggle.  My body feels better when I don’t eat meat.  I feel lighter and healthier.  There is a huge problem  I don’t like some veggies, am allergic to mushrooms and cannot tolerate a lot of nuts.

Now do you see my dilemma?  Today I found this wonderful post  http://www.lamayeshe.com/article/becoming-vegan-when-vegetarian-not-enough

http://www.lamayeshe.com/article/becoming-vegan-when-vegetarian-not-enough

I am about to give it another try , in the meantime

Milk and dairy – I buy local milk have been to the dairy the cows are free-range  -Cheese is my downfall  and I use Nutlex  – they say they use a small amount of sustainable palm oil  – more issues . Rarely drink milk.

Eggs – free range organic and local (when I can)  but always free range organic  – cheaper than meat.  I used to collect the  eggs on the farm when I was a kid – rationalising  again.

Anyway if you will pardon the pun – food for thought

Hate and fear

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Hate and fear

It appears that hate and fear drive a number of Australians  when speaking about Asylum seekers.  A recent study by  Monash University  stated that a majority Australians  are against  the  ‘Asylum  Boat Seekers’  and yet still want a multicultural society.  The two positions seem paradoxically opposed.  The poll indicated that the majority of Australians were opposed to Asylum seekers arriving by boat……

Who were the people surveyed?  If we were to sample 1000 people in inner Sydney  and 1000 people in  the western suburbs of Sydney , there would be a very different outcome.  My concern is, these polls are taken as gospel. Anyone who has ever studied statistics knows  that your choice of demographic when conducting a poll can give a  predetermined outcome.

I have more faith in Australians than the few negative comments that followed the post on Facebook. Everyone is entitled  to an opinion and entitled to have it heard, but these studies do not and cannot speak for us all.

Europeans and others are all immigrants to this country since the beginning of white settlement.  Our  human rights record is poor when as colonisers we look at our own recorded behaviours towards the First Nation people of this land and our continuing treatment of them.

As for Asylum seekers, they  cannot go back to where they came from, for there is no place for them to go back to. Look at the photos of Aleppo and ask yourself if you would stay there. Ask yourself why these people are fleeing their land of their birth. Ask yourself why these wars are being fought and who is supporting the warring factions and who is supplying the ammunition. You may not like the answers you find.

The fact that I did not delete any comments following my post attests to the fact that I understand people have a differing opinion to mine.

Just a few well-known people in Australia who have come from a refugee background are:

  • Anh Do (Comedian/ Author)
  • Les Murray (Sport- football)
  • Frank Lowy (Property owner)
  • Tan Le (Technology)
  • The Honourable James Spigelman (Law)
  • Majak Daw (AFL)
  • Judy Cassab (Artist)
  • Dr Karl Kruszelnicki (Radio DJ/ Scientist)
  • Huy Truong (Dot.com manager)

I ask that the press does not pretend to speak for me or others like me. Consider where we would be today without immigrants.

I will not become a sideline terrorist by subscribing to the fear and hate that is whipped up by the media and others under the guise of protecting our way of life.

Like many others, I do not want to see Australian land and companies swamped by  foreign ownership. This issue has little to do with refugees and Asylum seekers and owes its existence to white  politicians, people of privilege selling us out to foreign powers.  China is the most notable example. In 2012 the government and opposition both welcomed foreign investment in Australia. In December 2011, Peter Costello joined with Bob Hawke in a delegation to the Gulf States where they courted countries  such as Saudi Arabia and Kuwait to expand their investments in Australian food and agricultural industries

I am firmly opposed to the current level of foreign investment in Australia. However, I will open my  home and my heart to those who are fleeing oppression and possibly death, to those who want a new life and a new start.

I will not be party to locking people up in detention centres and taking away their dignity and subjecting them to the same inhuman treatment that they have fought to escape, or to ensuring that they are never allowed to enter Australia.

I do ask that they leave behind their fears and old hatreds and that they embrace the Australian way of life. I ask that they are allowed to practice their religious beliefs. I will not tell a Sikh he may not wear a turban, or a Jew that he cannot wear a yarmulke and read from the Torah and celebrate the Sabbath. I will not tell a Mormon not to read The Book of Mormon or a Jehovah’s Witness that he /she must eat meat or have a blood transfusion.

I will not tell a woman who freely chooses to wear a hijab that she must dress in western dress. I will not interfere with a person’s right to practice their religious beliefs as long as they are not breaking any of the legitimate constitutionally enacted laws of this country where they have chosen to make their home.

I will not be part of any action that is driven by fear and divisiveness.

And lastly if you  are on Facebook and don’t like what is in my news feed feel free to unfriend me.  I certainly won’t be offended.

BAH HUMBUG – Death and Christmas

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M C Beaton, do you know who she is?  No?   She is a fantastic writer and among my favourite stories are her Hamish McBeth series and Agatha Raisin series.She also  writes under a number of pseudonyms.

Her Blog is called Marion. Her husband has recently passed away. Through her blog, she is reaching out for support and using it as a cathartic process to help her deal with his death. By sharing her grief and sense of displacement she is also helping others travelling a similar path.  When a person of note allows their frailty and vulnerability to be exposed, it normalises responses.  We recognise we are not alone and become aware that suffering is transitory as is life itself.

When we grieve it embarrasses others. Oh yes, people are fine in the immediate aftermath but then they want to move on and they want you to move on. They are embarrassed, they no longer know how to respond to a person in pain.  We fail to understand how deep the wound is. We also forget that you never stop grieving the loss of a loved one you bury the grief and adapt to the changes. Death and grieving are taboo subjects in this  so-called enlightened time.

What Marion is achieving  with her blog is commendable, she is letting others know it is OK to grieve, to not feel right about the way things are, to accept help when you are unable to cope with life changing events.  For Marion, it is a win-win situation.  Her self-worth is validated by her fans who are supporting her, assisting her with her healing and by sharing she is reaching out those in a similar situation.

Her blog this week  hit a chord with me on several levels.  My Dad passed away in January 2015, I am still grieving, not outwardly  but inwardly.  There is not a day that goes by when I do not think about Dad and miss him.  I don’t talk about him much because its 20 months and I should have moved on, not be maudlin. Christmas is coming to be followed by my birthday, the anniversary of Dad’s passing and my parents wedding anniversary all within the space of three days. It will be hard.  But I put on my party face and bury the hurt. I cry in private, there are the little things that trigger a memory; a smell, a song, a desire to talk once more, to hold his hand and tell him I love him.   I am crying now as I type these words.

Also, I like Marion am not a fan of Christmas.  For me, Christmas is a time for children and mine are grown up and my grandchildren are thousands of kilometers away.  I found her words more eloquent than any I can craft and I will close with  her comment on Christmas;

“I am not a fan of Christmas. It is a disease of the expectations with people spending money they can’t afford to impress relatives they don’t even like. I don’t mind the religious bit and I enjoy carols but all the commercialism offends me. I wonder how many divorces there are in January when the credit card bills come in. It particularly hits the hardest at people of low self-worth who buy popularity or get blackmailed into parting with cash by rapacious relatives. Bah! Humbug!”    M C  Beaton November 2016  https://www.facebook.com/notes/m-c-beaton/marion-here-christmas/1532621506764482

Thank you Marion, and may you find some peace and comfort over the coming festive season and new year, but whatever you do keep writing.   Your blogging friend Linda.

The man who never forgot he had a daughter, but…

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The man who never forgot he had a daughter, but did not know who she was…

Introduction:

Creative writing has the ability to touch the soul, the heart and the mind. It reaches deep into the recesses of our being and touches a chord that enables the story and the message to be readily communicated.  Personkind, has from its earliest days used the oral tradition and all storytelling has grown from that humble but important beginning.  Creative writing is a tool that educates, entertains and builds societal awareness.  As a wordsmith, creative writing is the tool I use to relate stories that hold the message that dementia is not a contagious disease,  or exclusively a disease of the elderly. Dementia has an incredible impact on the person with dementia and the families and caregivers supporting them.  There is also the financial impact on our health care systems. The average person will read a short story or a novel before they will read a health fact sheet or a scientific paper. Writing about my experiences I am using my discipline to inform and educate, creating and building word by word a dementia friendly environment in Australia.  People fear what they do not understand. Providing understanding and helps to remove the stigma surrounding dementia and is but one small step on the road to creating a dementia friendly world.

Part 1:  The Beginning

Ayn Rand states ‘… altruism should never be confused with goodness, kindness, to others or respect for others and that the absolute of altruism is self-sacrifice…’[1]

THIS IS THE TRUTH every caregiver knows. Dementia is a word that evokes fear, and sends us scurrying away from a fate we do not wish to acknowledge.

What is dementia? There are in excess of 100 identified neurological diseases of which dementia is a component[2].  The World Health Organisation defines dementia as;

‘…a syndrome—usually of a chronic or progressive nature —in which there is deterioration of cognitive function (i.e. the ability to process thought) beyond what might be expected for normal aging. It affects memory, thinking, orientation, comprehension, calculation, learning, capacity, language and judgement.’[3]

It is a terminal disease, there is no vaccine, no cure and SOMEWHERE in the world every four seconds SOMEONE is diagnosed with a dementia based illness.

Sacks theorises ‘…we must deepen the case history to a narrative or a tale…the patient’s essential being is very relevant.’[4]

The majority of medical practitioners do not appear to have clear grasp of this concept.  This was demonstrated clearly at the first meeting with my father and his treating General Practitioner of 25 years. We were summarily dismissed with a display of patriarchal indifference, and a patronising pat on the head. His advice — this was to be expected as one ages. Uniformed response.

FACT — Dementia based diseases are not solely a disease of the elderly. There are recorded cases as young as two years of age, for example associated with Batten’s Disease.[5]

Dr Alzheimer’s first patient was only 51 and patients with Lewy Body Disease have been diagnosed in their 40s.[6]

As medical science has evolved and diagnostic techniques are refined, patients in their 20’s and 30’s are now being diagnosed with varying forms of Young Onset Dementia.

We were offered no counselling or referrals, no home help or meals on wheels; nothing to make life easier, no physiotherapy or ongoing assessments. My father was having hallucinations, these were dismissed and the advice by Doctor X was to ‘get his hearing aids checked.’ No advice was provided regarding my father’s continuing ability to drive.

We went home and waited, he morphed from one set of symptoms to another. The disease was not static. It ramped up its progress and at other times, my father appeared completely normal, and this could all happen within the space of a few hours. Life was chaotic and the disease wreaked havoc with our day to day existence.  Doctor X remained immoveable in his conviction, that nothing could ameliorate my father’s condition.

Unsure of what to do next, I did what most people do today when faced with an insurmountable problem, I turned to Google and then to social media. I researched, compiling more information, researching medical journal abstracts with aid of a dictionary, I gained an understanding of the technical jargon. Eventually, I arrived at a point where I was convinced my father was suffering from a neurological disorder known as Lewy Body Dementia or Diffuse Lewy Body.

Armed with a folder of documentation, a liberal helping of determination, a diary of observed behaviours, and drawing on my experiences in nursing, I made an appointment to see Doctor X.  I acknowledged a kinship with Don Quixote. I knew I was embarking on a voyage taking a tilt at the establishment, a prestigious, authoritarian, and elitist windmill.

The appointment did not go well. Doctor X was unwilling to discuss or listen to my theories. In his words I was, ‘an overprotective, neurotic, female, not trained to diagnose disease, and unwilling to accept the onset of the natural aging pattern.’

Doctor X’s behaviour is reflected in Oliver Sack’s work when he creates an analogy between science and disease;

‘…therefore serve as a warning, and a parable — of what happens to a science  which eschews the judgemental, the particular, the personal and becomes entirely abstract and computational.’[7]

Angry and disappointed, we found another Doctor. Following that appointment we had an urgent referral for my father to local geriatrician with an excellent reputation.  She not only knew of the disease but is an acknowledged expert in her field. The news was –  YES –   he did in fact have Dementia with Lewy Bodies.

Part 2:  Knowing the Disease — what is Lewy Body Disease?

IT IS THE MOST DIFFICULT disease to diagnose and the thought to be the second most common of the dementia based neurological illnesses.  First diagnosed by Dr Lewy in 1912,[8]

…it was not consistently recognized until 1996, and not listed in the International Classification of Diseases until 2005.’[9]

 

3 Core Features

  1. Fluctuations in cognitive behaviour. Awareness and concentration will fluctuate widely and without warning. The individual can progress from hyper-alertness to a state of confusion, drowsiness or non-responsiveness. Attention spans will also fluctuate. These periods can last from a period of a few seconds to days.
  2. Slow physical movement, muscle rigidity, myoclonic spasm, tremor and ‘wooden’ face, shuffling and the ‘Lewy lean’.
  3. Hallucinations are a primary indicator and encompass the sensory spectrum they may be tactile, auditory, olfactory, and visual and include taste.

  

Signs of Lewy Body Dementia

  • It is common for Lewy Body patients to experience depression as an understanding of self is maintained.
  • Apathy. Executive functioning making decisions too difficult. There is an increased lack of ability to deal with daily living tasks. Dressing, answering the phone, paying bills, communicating verbally with family. Repeated falls and fainting. (Postural hypertension and syncope).
  • Physical movement becomes more difficult and slow, shuffling walk, stiff limbs, or tremors.
  • REM sleep disturbances, including insomnia and acting out dreams—movement, vocalisation and hallucinations, restless leg syndrome. Paranoia and Capgras Syndrome may also be experienced.
  • Fluctuations in autonomic processes. This includes blood pressure, body temperature, urinary difficulties, constipation, and difficulty swallowing. (dysphagia)[10]
  • Neuroleptic Malignancy Syndrome – extreme hypersensitivity to anti-psychotic drugs and opiates —can be fatal.

Not all Lewy Body patients will present with all of these symptoms at the same time. However, all Lewy Body patients will experience these symptoms throughout the progress of the disease.  From diagnosis the projected life span is five to seven years. The disease progresses differently for each individual.

Dementia based illnesses are not a natural part of the aging process and there is more to dementia than Alzheimers.[11]

 

Part 3:  Living with Lewy Body Disease – Dad and Me

Our journey encompassed a six year period.  Retrospectively we recognised it was evident for five years prior to diagnosis.  My feelings toward ‘Lewy’ fluctuate as widely as the disease itself.  It drove us to the edge, it threatened relationships, caused physical and financial hardship and taught us that life is not fair. I am grateful to ‘Lewy’ because it allowed me to get to know a wonderful, intelligent and reserved man in a very special way. I became his voice, his advocate, his protector. We were closer than lovers, we had an intimate relationship that death cannot break.

From my diaries:

  • There were nights when the night terrors tormented him, he would call out screaming that the devils were after him
  • I would sit rocking him in my arms, listening to the surf pounding the beach, he would be listening to the surf in a different time and place, hiding from the Japanese snippers on a mud-ball island in the Coral Sea.
  • There were days when he would make a cup of coffee at 10.00am and be like my Dad, and then at 10:30am, he could not even understand how to drink from a cup.
  • The fun times with the hallucinations when we had to shoo the chooks and ducks out of the bedroom because they were keeping him awake.
  • There was always a woman with a child in a pram in the corner. I never knew who she was.
  • I learnt how to tell therapeutic white lies so he did not relieve his mother’s death over and over again.
  • The bad times were when he thought I was someone sent to kill him and he would strike out to protect himself.
  • The devastatingly sad days when he, with gentleness would introduce himself and ask my name, and say, ‘That’s a lovely name, that’s my daughter’s name’ or ‘who is that lady? I wish she would go. Pat won’t like it if she comes home and finds another woman here.’ That woman was his wife of 68 years.
  • I loved him, fought medical personnel, fed him, shaved him, washed him, dressed him, and made sure he had his medication.
  • At times we argued as we tried to exist in his world, because he could not exist in ours.
  • Home-help, meals on wheels, and the hospital bed, the shower adaptions, ramps, wheelchairs, all these things turned the house into a de-facto hospital.
  • I was with him day and night when he was in hospital, because the staff had no knowledge of how to deal with his disease.
  • My Mother withdrew, she also has dementia associated with Congestive Obstructive Pulmonary Disease (COPD). She could not cope with the changes and understand how he could change in the blink of an eye, while always knowing who he was.
  • There was the time he looked at me and said, ‘I never forget I have a daughter but sometimes I forget you are her.’

When he died part of me died with him. Ayn Rand was correct, altruism is the destruction of self for another. Any caregiver will tell you, it is part of the caregiving experience.

Epilogue:

Oliver Sacks, The Man Who Mistook his Wife for a Hat and other clinical tales, is an exemplar of the genre of scientific writing.

The creative artefact, ‘The man who never forgot he had a daughter, but…’ is similarly, a real life exposition of the human experience and I have drawn on Sacks’ work in constructing this piece.  Sacks states,

‘If a man has lost a leg or an eye, he knows he has lost a leg or an eye, but if he has lost a self – himself – he cannot know it, because he is no longer there to know it.’

Sacks provides a learned dissertation on the condition of his patient Dr P, and blends clinical information and personalised humorous observations into an informed narrative. In my own exposition I have also merged the clinical with the personal observation.

The discourse is divided into five distinct sections. An introduction followed by an abstract overview of the term dementia, offering context for the information that follows. Thirdly, a clinical introduction to the disease, with references to provides authenticity to the work. Then a personal reminisce of events, factual experiences, part of the journey of the progression of my father’s illness, and finally an epilogue.

It is impossible to distil six years of personal observation in 1500 words. I have included mimetic diary entries, humorous and painful as dot points;

  1. To maximise content
  2. To mimic the sentence structure of scientific writing.

The work is factual and all elements, other than personal observations have been researched and acknowledged. The use of footnotes is employed to prevent the reader being distracted from the narrative by referencing annotations.

I have approached the work with humour and empathy from the perspective of the family caregiver. Empathy and altered perspective are techniques Sacks makes full use of in this work.  In constructing this work I have challenged the convention of scientific writing as does Sacks, with the inclusion of personal reflections; pushing the boundaries between the objective, and depersonalised scientific account and the subjective narrative.

My approach has come from a foundation of an intimate knowledge not only of the patient, but of the disease itself. It is a singularly idiosyncratic viewpoint, defined by a physical and emotional journey.  Sacks uses empathy and humour as devices to make to the narrative more appealing, a technique I have adopted. The inclusion of photos and illustrations creates an adaption of the scientific genre as demonstrated by Oliver Sacks.

My work demonstrates the medical profession is slowly changing. It continues to be a profession dominated by males. Some members of the profession when questioned, especially by a female appear ill equipped to respond appropriately. Dementia based illnesses are complex diseases, doctors are human, they get it wrong. Ego gets in the way. Never be deterred by the lack of empathy, or knowledge and request more information and if it is not freely given, seek it for yourself.

In electing to present a creative artefact that outlines a personal journey interspersed with factual information, in a similar format used by Dr Oliver Sachs it is clearly demonstrated how creative writing both entertains and educates.  It engages the reader in an emotional journey while providing useful information. ‘The man who never forgot he had a daughter, but…, is an exemplar that clearly illustrates how the discipline of Creative Writing does contribute to creating a dementia-free nation.

 

Dementia can affect any one at any stage of life.

 

Word count 2497

[1] https://www.youtube.com/watch?v=51pMod2Aaso

[2] https://fightdementia.org.au/about-dementia-and-memory-loss/about-dementia/types-of-dementia

[3] WHO  World Health Organisation http://www.who.int/mediacentre/factsheets/fs362/en/

[4] Sacks, O (1998) The Man who Mistook his Wife for a Hat and other clinical tales. Preface.  Simon and Schuster, New York

[5] http://bdsra.org/what-is-batten-disease/

[6] Rossor, M. N., Fox, N. C., Mummery, C. J., Schott, J. M., & Warren, J. D. (2010). The diagnosis of young-onset dementia. Lancet Neurology9(8), 793–806. doi:10.1016/S1474-4422(10)70159-9

[7] Sacks, O (1998) The Man who Mistook his Wife for a Hat and other clinical tales.p.19 Simon and Schuster, New York.

[8]  http://www.researchgate.net/profile/Kelly_Del_Tredici/publication/233773978_100_years_of_Lewy_pathology/links/5475ca100cf29afed612b4ae.pdf

[9] http://www.todaysgeriatricmedicine.com/archive/011613p12.shtml

[10] http://www.helpguide.org/articles/alzheimers-dementia/lewy-body-dementia.htm#what

[11] http://memory.ucsf.edu/brain/aging/dementia

HUMAN RIGHTS -ANASTASIA LIN

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When I was at the Ubud Writers & Readers Festival in October 2016- the highpoint of the festival for me was meeting and speaking with Anastasia Lin.

It was a brief exchange – I saw into the heart of this extraordinary young woman and we connected. An older, overweight westerner and a beauty queen, what could the two of us have in common? The answer is simple, to speak the truth about human rights and a desire for freedom for all people – not just for those who can afford it.

Anastasia is a shining star, a role model. Two are of my most treasured photos from this event are of Anastasia and myself. She is brave beyond measure. The risks she exposes herself to are enormous, but she does not break.

anastasiaHer name means resurrection. How apt. Please watch and share this YouTube clip and learn. She may not have been to Tibet but she speaks out for the Tibetans as well as other persecuted groups. His Holiness, the Dalai Lama says “Go to Tibet and see many things. Then…tell the world.”

Please watch and share this YouTube clip and learn.

” Anastasia Lin is telling the world. May you walk in light and peace and may the Enlightened Ones watch over you always and keep you safe.

 

Tirtagangga Bali Water Palace

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Tirtagangga  Bali Water Palace

Tirtagangga – The Water Palace is located near Ababi village in Ababi, Karangasem, situated about 6 kms. north of the town of Amlapura, 83 km from Denpasar.

History Bali water palace – Tirtagangga
When we visited these delightful gardens on a bright and beautiful Sunday, it was full of Muslim ladies and their families. They were like a group of brightly coloured birds scattered about the park.

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The beauty of the gardens and layout was so breath taking I decided to do some research on the history of the gardens. They have this wonderful Alice in Wonderland ageless appeal.

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Information provided indicates the gardens of the Bali water palace in Tirtagangga were designed and constructed in 1948 by Anak Agung Anglurah Ketut Karangasem (1887 – 1966). He was the last Raja of Karangasem.

A man different from his predecessors he was very hands on. He was unusual because he was not only the architect of the water gardens but also because he assisted with the construction of the gardens.

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When visiting the construction people were astonished to find the Raja out there among the labourers, working knee deep in the mud digging out the pools and ponds.
The gardens of this Bali water palace show a unique mix of Balinese and Chinese architecture. The grounds comprise approx. 1.5ha. The water garden consists of three separate complexes each with ponds and many sculptures.

The most complex area is on the lower level and has two large ponds and a pagoda type water tower. The second level contains the swimming pools. The third level is the main complex. Here you will find the country home of Anak Agung Anglurah Ketut Karangasem, the former Raja. Today it houses a restaurant and four bungalow units (which are for rent).

waterpalace1

The design and building of the water gardens was a lifelong passion for the Raja. His visitors were often surprised to the Raja himself working side by side with his labourers, standing knee deep in mud digging out the earth.

There is a reservoir on the grounds which receives the spring water and water from this reservoir is delivered via a pipe system to the town of Amlapura.
Water is then piped into the upper swimming pool, from an underground system of pipes where it emerges from the mouth of a raksasa (a demon statue) at a corner of the pool. From here the water then flows over into a lower pool.

From the lowest swimming pool, the water continues to flow into some small fish ponds and from there into the rice fields that border the gardens.
The water of Tirtagangga has always been regarded as holy and is regularly used for religious temple ceremonies

On festival and  celebration days, Tirtagangga is an important destination. There are  colourful processions with offerings, umbrellas, flags and other tributes. The local temple priests lead the  ceremonies that are held at the springs, accompanied by chanting and the music of the ‘Beleganjur’, a gamelan gong group of small gongs with each musician striking a specific, different note on the musical scale, all blending in harmony.
A beautiful place and well worth the visit.

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Voters have spoken

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Voters have spoken

TRUMP is the President Elect. Americans have voted exercising their democratic right. Only 56% of eligible Americans have voted.

What has drawn America to this point in their history? Is it the same set of drivers that caused the dissatisfaction in the UK and resulted in Brexit?

Is it the same uncertainty that is driving large numbers of Australians to follow fear mongering racists in our own country? Before we criticise the USA, take a long hard look at our own political makeup.

It is as if we have regressed to the 1930s and the world is in turmoil. We must blame someone other than ourselves, someone must pay! Let’s play find the scapegoat!

Our leaders have no morals or values and those who peddle fear and blame, religious and ethnic bigotry are looking like champions.

As a group, we are reaping what we have sown. We have become complacent and lack compassion. The spoilt, throwaway society. No longer do we save for what we need. We take what we want and declare bankruptcy later. Bigger houses, bigger cars and TVs. Your house is not a home unless you have a pool and a games or entertainment room.

Little by little we have abrogated our personal freedoms until it is too late and we now have restrictions that are unbelievable. We have blamed others for our problems and not had the courage to stand up and take responsibility for our own actions. It is easier to let them do it, to let them take the blame. Who are “the them”, we all keep referring to?

We have othered huge groups of people. Those who cannot find employment, the disadvantaged, the ill, the older people in our society. We have closed our minds to the terror and torment on our doorstep- because those people really don’t count they are faceless. We don’t know them.

We forget the terror and subjugation, we as white settlers inflicted on the First Nation People. We resist acknowledging the issues we have caused through our actions since settlement.

Our forebears were all refugees of one form or another; albeit prisoners of mother England, fleeing from religious bigotry, the Franco-Prussian Wars, poverty, the breakup of Europe and political oppression.

They were all looking for a new life, a chance to start again. This occurred at the detriment of the First Nation People and we are all still dealing with the results of these actions. And now we have the temerity to close our borders to others attempting to escape the same situations and we justify our actions by saying it was a different world back then.

We have closed our eyes to world – wide genocide because it does not impact on us personally and we believe that violence with guns and weapons of mass destruction is the answer. We watch as superpowers support both sides. If American was not at war on numerous fronts, where would a large part of its domestic profit come from? If there was no need for such a large armed presence where would the people now employed in the services find jobs? How would the industries who support their war effort survive?

We fight terrorism with terrorism and create terrorists by disenfranchising those who have already suffered.

We have allowed the takeover of our industries and land by financial stealth. We have adopted an “it will be OK approach” because we want our world to be sanitised we do not want to face the truth.

Shareholders are on social media bleating that corporations are doing the wrong thing, but fail to wield the power they have to pull corporations into line. It’s easier to blame some faceless board of directors than it is to stand up and demand action.

The greatest evils, Monsanto, and pharmaceutical companies walk hand in hand, buying DNA and preventing the manufacture and sale of products that can alleviate pain and suffering. Nestles CEO says fresh clean water is not a human right, it is a commodity to be bought and sold and governments, by their actions agree. What is next? Will we need to pay for clean air?

We prefer to watch Gogglebox and reality TV, we are more in tune with the Kardashians and stay as far from the reality of real life as possible.
Mining companies frack our land where our crops are grown. Rivers can be ignited with a spark and waterways are poisoned. Who benefits from these actions? Corporations and their shareholders.

Climate change, plate movement, earthquakes, and tremors in lands where fracking is evident. But don’t listen to the loonies it is all part of the natural order of things.

Perhaps it is. Dinosaurs died out because they could not adapt, is the human race about to face the same plight as the dinosaur? Is what we will leave behind salvageable? Is dystopia no longer a word found in a literary discussion but a real possibility?

TRUMP is a man who has shown the value of money and fear and what it can buy. Supreme power. But do not blame the people who voted him into power. The blame lies with each of us who have not stood up against injustice, who have turned away and said let someone else solve the problem, who have become complacent and mired in this society of instant gratification and the need for material possessions.

We have become internal isolationists.

Our society has no compassion and revels in the glory of ‘Bread and Circuses”.

May whatever power you pray to help us because in the coming months and years we will need help from a greater and more compassionate power.

The Cycle of Life

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The Cycle of Life

What an exciting cycle of time we have passed through in the last 5 years. There have been incredible highs and the darkest, deepest lows. For me completing my Bachelor of Creative Writing has been a dream come true. Being accepted to the Masters PPCW program was something I would not have believed possible. I have made new friends, stretched my boundaries beyond breaking point. Undertaken projects I could not have dreamt of being involved in, and been supported by loving family and kind and thoughtful friends. The past five years I have achieved beyond my dreams, shared tragedy, loss, heartache and untold joy.

Along the way my beautiful father passed away and left me feeling adrift without an anchor, my incredible, supportive partner underwent lifesaving surgery.

Our beautiful grandson was born and died without us being able to say hello. Bernie and I have welcomed two beautiful and incredible daughters into our lives as our sons have settled with wonderful partners.
We have connected with family members we never knew existed and reconnected with old friends from the past.

Sam and Matty, our special grandsons have grown into strong and sensitive young men. People have passed in and out of our lives leaving us richer for the engagement. Even those who have caused us pain, have taught us lessons of endurance and compassion.

As a family unit we have tried to juggle long-distance relationships, sometimes failing, sometimes succeeding. Along the way, there has always been someone to support us, as we have supported others. Paths have merged, crossed and diverged. There have been health issues and personal conflicts.

There has been tears and laughter. We have tried new ventures, we have struggled financially.

Throughout all of this, we have experienced love, friendship, and compassion; these have been the supports that have kept us moving forward and have outweighed the hurts and negativity.

We stand now at a cross road, the path we are about to embark upon is not clear, it will be full of challenges.
That is the certainty of life, the consistency of change.

We have each other, we have supportive friends, and we have a roof over our heads and food in our cupboards. We are luckier than most.

In the words of a young friend, bring it on 2017 we are ready for you….

Living with Dementia

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Living with and talking about dementia. I agree that we need to talk about the problems associated with dementia and living with dementia for support persons and people with dementia. We need to discuss them in order to educate and inform. We also need to be sensitive to others circumstances. I have worked long and hard (and to continue to do so)to provide information and support for people living with dementia especially LBD. However, when my father died after a long battle with this disease,the last thing I would have wanted when I was out in a social situation was to hear someone discussing persons with dementia. The wound was too raw at that point. I also recognise that there have been times where in my desire to spread the word I have overstepped the mark. This occurred simply because I did not consider the feelings of others, I did not practice compassion. To override the sensibilities of others is not a good tactic – we cannot know how another person is feeling, what they have experienced.

Additionally, I saw a poster online, one used at an information session that talked about “phasing out all institutionalised care”. I have not seen the presentation and as such, I have not had the poster defined within the context of the speaker’s notes; I have seen it only as a stand-alone comment on Facebook. As have many others. What exactly does this statement mean?

Is this a discussion about community care v’s institutionalised care?
“Community care is about how the community looks after its members. What skills and resources does a community have?
Community care is …
Informal, where there are no rigid guidelines or principles that define the service. Is not bound by government policy or practice.
Spontaneous, where the service is temporary in fulfilling a specific need at a particular time and in a particular setting.
Relies on community members to provide the service.
About the members supporting each other.
A value in being a part of the community.
Having something to contribute to the community.
The amount of support provided is directly related to the existing skills and resources of the community.
Where a person has no existing communities (living, recreational, education or employment), that person will be disadvantaged in not being able to fulfill his/her needs.
Where is the line drawn between community care and institutional care?:
I feel that community care is about ordinary community members getting together as a group to provide for the needs of others in their community.

Institutional care is more organised around a specialised service that provides specalised skills and resources that are not available in the wider community, to a group, whose needs can not be fulfilled within the wider community.
When providing the most appropriate care for people with high support needs …
1) The community is not where the person is living, but where the person participates, shares experiences and has valued relationships with others.
2) People with high support needs will always need support structures as a part of their lives.
3) The amount of participation in a community (living, education, employment or recreation) is directly related to the skills and resources of the person, and, the skills and resources of the community that the person wishes to participate in.
4) Institutions are going to be around in one form or another whether we like it or not, It is the way that they are used that is the problem.
5) The institutions of a society towards a particular group determine the way the group participates in society.
6) The institutions of a particular government department, organisation, profession or service define the way the person is supported within that society.
7) Facilities that support people with high support needs do not need to be the nursing homes or prisons but can become warm inviting community places that offer a range of services to the community, as well as be a part of the wider community within that society.
8) People with high support needs are a minority group in our society, and will have the same problems as other minority groups in being a part of society.”

There will always be situations where PWD cannot be cared for at home. The care support person may be ill, old, cannot cope, or have no additional support, or be the person providing financial support. The person with dementia may be unable to undertake their day to day living tasks without assistance or supervision. They may require lifting, turning. They may be violent at times. It may be difficult to keep that person safe, even after turning your home into a fortress. They sometimes show paranoid behaviour and suffer from delusions.

PLEASE do not make people who make the decision to place their loved ones in supported accommodation, including lockdown units, feel shame or guilt over this action. Sometimes there is no other recourse.
While I applaud the actions those who continue to strive to make the world a better place for those living with dementia, do not forget the family and loved ones who are also impacted. We need more resources, more funding for research, early diagnosis, better medication regimes, better training and understanding by medical staff, none of this is in dispute.

We also need to recognise this is a disease with over 280 complex variants. A disease, which in its final stages sometimes cannot be managed without medical intervention and often placement in a facility.

There will always be those who walk away from one who has a terminal illness, because they are weak, or can not face their own mortality, or because they cannot forgive how that person has treated them throughout their lifetime. However, the majority of care support persons, put their lives on hold, suffer financial, personal, emotional and physical hardships in caring for a loved one.

There is a saying when dealing with this illness, “you meet one person with dementia, you have met one person with dementia, no two cases will follow the same path.”

There is no easy answer, no one size fits all in this equation.