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Monday, May 6, 2013

Arthur - A Journey with Alzheimers

Do you ever read the dedications in a book? Like me, you probably just glance over them but behind each one is a personal story.

If you read the dedication in my recent release SECRETS IN TIME, you will have seen it reads “This book is dedicated to the memory of my father, Arthur. Still miss you, Dad.”  I agonized over this dedication, which is the second dedication to my father (the first is in THE KING’S MAN).  I wanted the dedication to be about more than just my father… it was a story that belonged not just to him but to all sufferers of Alzheimers and the people who cared for them, but in the end I brought it back to the deeply personal.

Arthur in his favourite chair with a I like to remember him
The writing of SECRETS IN TIME is so intrinsically tied up with my father’s last few days, that as the anniversary of his death approaches, I feel, for the sake of all those out there who have lost a loved one to Alzheimers,  that the time has come to share my personal experience of this terrible disease.

A father always holds a special place in the heart of a daughter and Dad and I were very close. He imbued in me his love of history and literature. Having been brought up in the Edwardian household of his grandparents, with very little contact from his divorced parents, his notions of parenting were, in retrospect, a little strange. A loner all his life, he disliked  the bonhomie of “family” holidays, leaving my mother in charge of the two children while he went off on little adventures  of his own but oh, we loved it when he was around, reassured by his large, gentle presence. His idea of entertainment (in the days before television) would be to spend Sunday afternoon reading to us. He particularly despised childrens’ books, reading instead his own favourites (which were probably not always suitable!).  As a very sick child in hospital with meningitis he spent hours sitting by my bed reading Longfellow’s Hiawatha to me. I may not have understood the words but the cadence of the poetry read with his beautiful, very British accent was soothing to a young child.  

Arthur at my Graduation Ball with the newly commissioned Lieutenant
As I grew into a teenager, we still shared our love of history, going to all the latest movies “Cromwell”, “Nicholas and Alexander” (in which I fainted and had to be removed…can’t stand people talking about blood), Elizabeth R, Ann of a Thousand Days etc. He quietly encouraged my writing and we shared long walks along the beach every weekend sharing our thoughts of the week (and annoying a particularly yappy dog, nicknamed by Dad "Drop Dead", by running his walking stick down the fence). He took such pride in every achievement , the greatest of which was being accepted into Law at the University of Melbourne, something he would have liked to study but for the intervention of a war. With romantic notions of the Oxford colleges he never attended, he insisted I move into a residential college and was always there to pick me up and take me back on weekend visits (a round trip of 2 hours). When I was commissioned as an officer in the Australian Army, he was thrilled (as you can see in the photo above - on of the rare photos of us together). 

Marriage…grandchildren…career highs and lows…Dad was always there to share them and talk through the issues.

The maladies of ageing began to set in and we think, but of course have no proof, that it was the “hormone” treatment for prostate cancer that hastened his illness. It was noticeable after each treatment that he seemed a little more “muddly” and he began to suffer aphasia (loss of speech). In hindsight I realize we were ignoring the obvious symptoms and just putting them down to old age. Along with the aphasia, he began to imagine conspiracies (the next door neighbor was planning to kill his cat). However, mercifully he completed writing his memoirs and was able to participate in a session where we dubbed over the old home movies of our life in Kenya with a commentary. Memories of the dying days of the British Empire preserved forever.

Christmas 2006…the usual gathering in the family home. Dad stood in the kitchen, bewilderment on his face. “Who are all those people?” he asked me. My heart fell. This was not just Dad being muddly,  he genuinely did not recognize his own family.

On January 15 2007, while I waited in the first class lounge at Hong Kong Airport (after a birthday trip with my husband), my mother rang with the diagnosis – Alzheimers. Through tears I wrote in my travel diary… “How are you supposed to feel when the reality hits home?...I was going to lose my father in spirit long before the body…Alzheimers is a death sentence without a death…”.

And so it proved… to preserve my mother’s sanity they moved into a retirement village near me. We knew it would send Dad down but he was not the priority. My mother who had married the man she loved within 3 months of meeting was his sole carer. I don’t know how she did it, but that’s her own story to tell. He rapidly developed “sundowners syndrome”… the symptoms of which are described in Wikipedia as
  • Increased general confusion as natural light begins to fade and increased shadows appear.
  • Agitation and mood swings. Patients may become fairly frustrated with their own confusion as well as aggravated by noise. Patients found yelling and becoming increasingly upset with their caregiver is not uncommon.
  •  Mental and physical fatigue increase with the setting of the sun. This fatigue can play a role in the patient's irritability.
  • Tremors may increase and become uncontrollable. 
  • A patient may experience an increase in their restlessness while trying to sleep. Restlessness can often lead to pacing and or wandering which can be potentially harmful for a patient in a confused state.
He had every symptom. I had always thought Alzheimers resulted in sufferers sitting docilely in armchairs but not Dad-- he could not sit still, a symptom that continued right up until the end, a sore trial for all his carers (and fellow residents).  Looking back I marvel at how my mother coped...she plunged the house into darkness from 4.00 pm every afternoon.
In his last years as the disease took hold
The delusions of dementia meant I would get phone calls at work from him, terribly worried that he was about to be a) deported back to England or b) drafted back into the army. I would assure him that I would speak to the family lawyer and he would sort it out. A quick walk around the office to calm myself and then back on the phone to tell him I had “spoken to John” and it was all OK. That seemed to settle him until the next delusion took hold.  He imagined himself back in the grand houses of his childhood…going “upstairs” to change or not wanting to bother the staff.  When his beloved cat became ill and had to be hospitalized, he fretted terribly that one of his soldiers was unwell. We took the humour in the situation where we could find it.

Mum passed a book on to me… “The Man with Worried Eyes”…I could not bring myself to read it, but the title has stayed with me because it so perfectly captured what I saw in my father (and indeed I now see in other sufferers). He said “My brain is a little funny”…he never really understood his illness or the measures we had to take in coping with it. He viewed the world with worried eyes and my heart slowly broke.

He managed to read (and comment) on my first two published books but by the time I was appointed to the job of my career, of which I knew he would have been so proud, he was lost in another world. When that job of my dreams unraveled twelve months later, the one person to whom I would have turned for advice and wise counsel, my father, was not there.

The day came when Mum could cope no more and we had to move him into a nursing home.  Far from being a solution,  the nursing home just presented more problems. His sundowners and wandering was annoying other residents and the staff wanted him confined to a secure dementia ward. Oh my God… it was like an 18th century bedlam and in the middle of it was my gentle, loving, trusting father, with his worried eyes. He told my brother "I am in a very bad place". What broke me was seeing him impeccable English gentleman of a father who would never dream of being seen without having shaved and properly dressed (even on holiday!), shambling through those wards, unkempt and cared for.  My emotions swung between anger – with him for being ill, the nursing home for the treatment and terrible guilt for feeling that way and grief, deep seated grief – every visit I grieved anew. I hated visiting him in that awful place and, mercifully, in January 2010 we were able to move him to a smaller, more caring facility where in May of that year he died in his own bed, lovingly nursed by the carers he knew.

On our visits to him, we sat and read to him from his own memoirs, the only thing that seemed to keep him still and on my last visit with him, just before his last illness he looked up as I entered the room and said, “It’s Ali”…the first time he had said my name in such a long time although he always seemed to know me. I think in my own resemblance to my mother, he was seeing her as a younger woman, not me. My mother and brother he failed to recognise at all. On that last visit I sat and read to him as usual and on the following Friday came the call we had dreaded. He had developed pneumonia. I’d always heard it referred to as the “old man’s friend” without ever understanding why. What we did know was that he hated his life and if the old man’s friend was going to take him, the time had come.

During that long week, I took time off work, sharing the watch with my brother and mother, sitting in that peaceful room while we played him his favourite music.  When I returned home from my watch I found myself unable to do anything so I picked up my pen (in a figurative sense) and wrote-- a light hearted romantic time travel story as far removed from my life as I could send myself – that story became SECRETS IN TIME. I poured myself into that imaginary world, before it was time once again to return to his bedside.

Dad had always said he wanted to outlive his grandfather who had died at age 83.  During his last week of life he turned 83.  In my diary I wrote “Arthur is slipping away from us and again this gamut of emotions from relief to sorrow…”.  We kept the death watch at his bedside and were all with him when he eventually slipped away on a soft autumn evening.

I wrote… “The journey of the last three years from that first diagnosis to now, remains a confused jumble of conflicting emotions from fear to resentment, immense grief and guilt…”. Every time his condition deteriorated a little more meant we grieved anew… Alzheimers is a cruel disease for sufferer and family but I read in the paper today that researchers here in Victoria have moved a step closer to early diagnosis (=early intervention). Would I want to know? I’m not sure-- but what I do want my own family to know is that if decisions have to be made about me, then they are absolved of all guilt. Whatever must be done, as long as it done with love, will be for the best.

It is only now, on the third anniversary of his death, that I feel able to write publicly about my experience and I hope that someone going through the same ordeal will read this and realise they are not alone.

I would also like to use this forum to publicly acknowledge the incredible support my mother (in particular) received from Alzheimers Australia (Victorian branch). The royalties, such as they are, that I will receive from SECRETS IN TIME over this year will be donated to that organization in memory of my father.  I hasten to add that it will hardly make much of a blip in their giving program but the book is so intrinsically part of my father’s story that I cannot do otherwise and if another family can be helped then that is where they should go.

Arthur as a young man