Stories

The stories on these pages are from people affected by dementia.

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THE ROAD FORWARD IS THE WAY BACK

Dried reeds dance in the wind by the side of the road as the miles pass by, And sunlight streaming through the car window in rays connects my present to my childhood past.

Shapes of gathering clouds elicit from deep within my mind memories of lying on my back in perfect harmony and tranquillity with my world and letting my imagination take over my very being.

There is nowhere I can’t go and nothing I can’t do, empowered by the boundless montage of fantasies I can create from the sensations surrounding me.

My mother was diagnosed with Alzheimer’s disease two years ago, aged 60, and there is barely any aspect of her life that has been unaffected by her diagnosis.

She had to retire earlier than she would have otherwise and has not been able to enjoy retirement to the fullest, as she so deserved. Mum’s communication has also been affected by the dementia.  

She often has things she wants to tell us because she still has interests and notices the things going on around her, but the words regularly escape her, leaving her scared, sad and frustrated.

My mother died from dementia just over a year ago. She was 79 years old and had been first diagnosed in her late 60s.

Prior to that she spent just over two years in a locked dementia unit, initially classified as low care. She was prescribed haloperidol and it was used routinely in her residential dementia unit. I do not think it directly contributed to her death though it did affect her quality of life.

My mother in law, Norma Jamieson, was diagnosed with Dementia, around 4 years ago.

She was referred to a specialist whom confirmed she had Alzheimer’s, and placed Norma on medication. Norma lived alone in Balwyn North, as she had done since her separation from my father in law some 25-30 years earlier.

Initially the medication seemed to help a little, and then it seemed to be preventing her disease from progressing. Norma did have other issues, something to do with her thyroid, which had mental ability complications, also heart disease.

I have held an interest in dementia since my late mother-in-law developed early onset Alzheimer’s disease in the mid-1970s.

My mother-in-law lived in England where National Health Service institutions owed too much to a former and now thankfully bygone era. My memory of bewildered patients wandering scantily clad and barefoot on cold shiny linoleum, along green and cream corridors, and rows of narrow beds in curtained communal wards where the air was thick with the smell of stale urine and disinfectant, has stayed with me.

A gnarled hand, a knitted blue cap, A sky blue shawl held close. The slight, girlish voice asks, ‘What shall I do next?’

What was her life, this figure with a shawl? Did she dance the tarantella; play the harp; See Easter Island. Live in Zimbabwe; Be outraged by injustice?

Now she wanders. A grandson visits, ‘Heather’ he calls her. Heather, light and ephemeral.

The green eyes are bright, They see but the focus is opaque. ‘Duncan’, she calls. Yes, I knew Duncan. Where is he now?

As a Registered Nurse for over 20 years I have witnessed the ongoing use and abuse of chemical restraint for elderly across Australia; it is a prevalent practice that I find is due to a number of reasons including:

Both my parents were diagnosed with dementia within 2 years of each other: my father with Lewy Body Disease, my mother with Alzheimer’s.

As I lived an hour and a half drive away, I became a long distance carer for four years.

Dad died in 2010 and Mum entered care 10 months later.

I still care for Mum – but as a daughter rather than the primary carer. I could not have done what I did without the assistance of my family, a wonderful group of friends and organisations like Alzheimer's Australia and various Homecare groups. 

My story begins with my parents. My father had Alzheimer’s and his change was very sad to see although I could see the change in him, my siblings were too busy to notice.

He had other health problems by which I am aware of what medications side effects have on the individual. Only by research did I find this out.

My father died in 2010 with a subdural hematoma as he would constantly loose his footing and the nursing home he was in he had a fall which put him in hospital never to come out.

It has been 9 years since my father had a heart transplant giving him a new lease of life and allowing us to have him with us for much longer.

Unfortunately, the drugs that suppress my father’s immune system cause him to frequently develop skin cancers even though he never ventures into the sun.  He is, in fact, currently undergoing radiotherapy for a deadly melanoma known for its prevalence to those with suppressed immune systems.

What makes the side effects of his medication more challenging is the fact that he has vascular dementia.