The assistant laughed, not maliciously, but I suppose because it was a strange question to ask someone working in a museum. My grandfather heard what had happened and was very embarrassed and angry. I had never seen him like that. As a child, I found this very frightening.
I found out later on that my grandmother was living with Alzheimer’s disease. As children we were very much protected from the conversations, although we knew they were happening, but that night we told mum and dad about what happened in the museum, and they were furious.
They said something had to change. Here was my amazing grandfather who loved my grandmother, angry, and in total denial about her illness. There had been a complete communication breakdown.
My family are Indian, English and Portuguese and my grandmother was on the English side of my family. We were really close – my Mum said that I was her favourite. My grandmother had the most beautiful smile, which never left her face even though I could see her struggling. I would often hold her hand, like I felt I had to protect her.
My grandmother’s dementia had a significant impact on our family, who were quite divided in what care should be provided. No one really knew what to do, but tried to keep Grandma’s dementia private. They did this to try and protect her dignity, but, without a doubt, I believe her experience living with dementia could have been different if it was talked about more freely.
That’s why I was so proud to become New Zealand’s first Champion for Dementia. I was approached by many charities for a variety of causes, but I thought to myself, where is dementia in all of this? We cannot do this alone. I saw that in my own family. It’s something I connect with on a personal level.
As a Champion for Dementia, my advice would be that if you are concerned about yourself or a loved one, don’t be scared. Talk to someone, go to see your GP and contact your local organisation for information and support.
I hope that one day we can live in a supportive society and doesn’t shy away or shun aspects of our community. We need to have awareness and respect to look beyond our own resources. With unity there will always be strength.
And it’s this idea that is behind Alzheimers NZ’s Dementia Friends initiative. A Dementia Friend is someone who learns a bit about dementia and how they can help, by completing a short online programme. Almost 3,000 New Zealanders have signed up to become Dementia Friends so far, which is a wonderful start on our journey. Click here if you would like to join us.
Finally, I’d also like to encourage all New Zealanders to talk more about dementia. Ask questions. Give people the chance to help and champion you.
With love and support,