I Speak for My Father: A Daughter’s Story


Part 1:  The Beginning

Ayn Rand states that 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. We conjure up the common misconception, visions of dribbling, incontinent, blank face beings who have been robbed of their basic independence. There is more to dementia than the end stages. 

What is dementia? There are over 283 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 judgment.

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 speaks, reverently of the premise that ‘…we must deepen the case history to a narrative or a tale…the patient’s essential being is very relevant.’ Unfortunately, the majority of medical practitioners do not appear to have a clear grasp of this concept.  This was particularly evident 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 patronizing pat on the head. The advice — this was to be expected as one ages. Wrong. 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 had been diagnosed in their 40’s.

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 counseling 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 when or if my father should continue to drive or cease driving.

We went home and waited, we morphed from one set of symptoms to another. The disease was not static, sometimes ramping 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 immovable 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, reading medical journal abstracts with the aid of a dictionary, to assist my 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 behaviors, and drawing on my experiences in nursing, I made an appointment to see Doctor X.  I imagined kinship with Don Quixote. I knew I was embarking on a voyage that would take 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 behavior is reflected in Oliver Sack’s work when he speaks of the analogy between science and disease;

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

Angry and disappointed, we found another Doctor. Following an appointment with my own Doctor and we had an urgent referral for my father to local geriatrician with an excellent reputation.

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

It is the most difficult to diagnose and the second most common of 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

  1. Fluctuations in cognitive behavior. Awareness and concentration will fluctuate widely and without warning. The individual can progress from hypo-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 becomes 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, vocalization 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).

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 lifespan 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 Alzheimer’s.

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

Our journey was over a six-year period.  In retrospect, the disease had been obvious for at least 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. I was closer than a lover; we had an intimate connection that even death cannot break.

From my diaries:

  • There were nights when 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 snipers 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 10:30 am he could not work out how to drink from a cup.
  • The fun times came when we had to shoo the chooks and ducks out of the bedroom because they were keeping him awake.
  • 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 is a lovely name, that is 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, washed him, dressed him, and made sure he had his medication.
  • At times we argued as we tried to exist in his world as he could not exist in ours.
  • Home-help and 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 the hospital because the staff had no knowledge of how to deal with his disease.
  • My Mother withdrew, 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.

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.

Linda Morse

Apr 14, 2018