Stories

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

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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.

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.

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:

I care for my husband who was diagnosed with Alzheimer’s disease at the age of 63.

Pre Diagnosis- We were able to holiday overseas and take a caravan to places in Australia. We had a large garden which my husband kept in very good order.

He also had completed a Financial Planning diploma so was managing our finances very capably.

Diagnosis Journey- The actual diagnosis took almost 2 years as we were told my husband was depressed!

I went through the public system having blood tests, bone marrow biopsies, psychological tests, cat scans and MRI tests. They all came back negative. The doctors said they couldn't find out what was wrong with me. It was only that we pushed for a SPECT test that finally showed the severe damage in my brain that was causing the dementia.

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.

I often talk with relatives of residents who believe that their loved ones are being given antipsychotic medication inappropriately, often with dreadful side effects.