Dementia caring is lonely and frightening

A carer’s story
October 22, 2019
The word ‘refugee’
October 22, 2019

Dementia caring is lonely and frightening


My background 

We came to Australia from Burma 34 years ago as migrants to ensure a good education for our children.  My parents came first then my husband and I. My father was English and my mother Burmese.  One of the first challenges I have faced is learning the language. That was very hard.

My husband now has advanced dementia and requires constant supervision. He looks OK but I needed to learn a lot about how to support him. He sleeps a lot through the day and then wants to be up through he night.

When my husband became ill I was frightened and had to cope with having no savings. I was upset and frightened and it was hard having to stay at home

I am the only daughter left from my original family.  Because everyone else has now died, I don’t have family support in my caring role.

We also have no community support, but we have been supported through the Osborne Park Hospital, where the social worker has organised respite.

On Tuesday my husband gets support from the Umbrella organisation and on Wednesdays from the Australian Asian Association.  This gives me some respite, which is very helpful.

My personal strengths

I love drawing and all sorts of arts, crafts and sewing. I also love to go to a cultural dancing group.

I have learned to be prepared to face everything that comes along and be prepared to say yes. I love being busy and always find something to do around the house.

Accessing services through word of mouth

Most of the services we have accessed have been through word of mouth.

A Burmese lady doctor referred us to Ishar while I was still struggling with language and other issues of isolation. Ishar has provided continuity and support for many years, and particularly now with information sessions about dementia and its causes and consequences.

At Ishar I joined the Carers’ Group and that has given me the opportunity to share my experiences with others. The Carers’ Group has also given us information and support to know where to go and what to ask for.

Since coming to Ishar I have also been able to help out as a volunteer with some translating and filing. I am now also learning some computer skills.

An important part of the services we have accessed is learning about the nature of dementia and how to provide support.