The man who never forgot he had a daughter, but did not know who she was…
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…’
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. 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.’
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.’
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.
Dr Alzheimer’s first patient was only 51 and patients with Lewy Body Disease have been diagnosed in their 40s.
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.’
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,
‘…it was not consistently recognized until 1996, and not listed in the International Classification of Diseases until 2005.’
3 Core Features
- 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.
- Slow physical movement, muscle rigidity, myoclonic spasm, tremor and ‘wooden’ face, shuffling and the ‘Lewy lean’.
- 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)
- 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.
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.
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;
- To maximise content
- 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
 WHO World Health Organisation http://www.who.int/mediacentre/factsheets/fs362/en/
 Sacks, O (1998) The Man who Mistook his Wife for a Hat and other clinical tales. Preface. Simon and Schuster, New York
 Rossor, M. N., Fox, N. C., Mummery, C. J., Schott, J. M., & Warren, J. D. (2010). The diagnosis of young-onset dementia. Lancet Neurology, 9(8), 793–806. doi:10.1016/S1474-4422(10)70159-9
 Sacks, O (1998) The Man who Mistook his Wife for a Hat and other clinical tales.p.19 Simon and Schuster, New York.