Stories

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

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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?

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

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.

My beloved Dad (country Victoria) was forced into aged care for 6.5 years by my sibling (Adelaide), who didn’t want him living with us in a loving family unit.

We had an incredible amount of contact with him, and supported him in every way, took him on outings regularly, bought him to the family home weekly for special roasts, and treated him with dignity at all times.

He felt special and loved.

For 20 years we NEVER missed a birthday, father’s day or Christmas etc. No different in aged Care. He was a lucky one.

My wife has dementia and is going well down hill.

It has been about 3 years since she was diagnosed. It was delivered when I went to hospital to have a hip replaced. When I came out, she didn’t want to know me. She was put in to a home at Mirboo.

Life would be a lot easier if there was more help for people in my case. This has changed my life in the way I have to cook and look after her. My social life has been affected too, no golf etc.

Hi everyone,

I was lucky to be the winner of the Fight Dementia, Priceline gift box for my wife!

A big thank you to everyone involved.

I'm 42, and was in the last month finally diagnosed with Lewy Body Dementia.

Myself and my wonderful wife have spent the last 3 years in the public system that still to this day hasn't given me a diagnosis. They said I have some sort of Dementia but couldn't give an exact diagnosis. They had me on the waiting list to see a Neurosurgeon.