Stories

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

Click here to tell us your story.

 

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.