My name is Danijela and in 1996 my frail parents came into my care from overseas.
I knew nothing of Aged care assessments, Carers respite or carer payments.
For a number of years I struggled on my own, and the local GP and other services just kept saying I should put my parents into a nursing home! I now know that my mother’s dementia was misdiagnosed for 6 years as severe depression. This was partly due to her not speaking English and no doctor taking enough time to examine her properly.
We spent 4 years of suffering, when she was in the stage of misplacing things and accusing every one of stealing from her, or burning her food, or getting lost, crying. My life changed completely.
Once upon a time I was a Human Resource Manager, and later a successful self employed tourism operator, married, a published writer. Now all I had time and energy for was being a full time carer.
After a very long illness, my father died and mother and I moved into a larger town in the hope of obtaining some additional help. However, now that I was only caring for one person instead of two, the hours of help I received were reduced to 3 hours per week. (In the past, one week end per month, I was able to have a bi cultural respite worker come into our house and take care of my parents).
Now in a new town, we were so alone and there were no bi cultural respite workers. As my mother’s dementia progressed I was in and out of hospitals with different serious illnesses. Mum had to go into respite where no one could speak her language. I was feeling double shame and guilt about this. I was drinking too much, eating for comfort. I felt really abandoned.
My mother had me and was feeling safe and loved. I am sad that family members and friends are often totally “removed” from the difficult reality of a full time carer’s life.
Four years ago I had to place my mother into residential care. Since then, my health has improved a little but unfortunately, severe stress during a prolong time can cause permanent damage. These days, I spend about 3-4 days per week with my mum, and she is now in a “happy” stage of dementia; smiling a lot, talking non stop, so happy to be with me, listening to our music, eating our food, when we are together. I cannot abandon her, so I stay in this town even though I would love to move to a warmer state because of my health.
After much counselling, self help, prayer, I am now an active ambassador for dementia/aged care reforms.
Carers deserve a better life. Dementia sufferers, I believe, are entitled to improved social inclusion.
And people from culturally and linguistically diverse background MUST BE INCLUDED AND RESPECTED AND ASSISTED MORE.
“God loves me because he gave me you”, my mother says.
I love her so…