Dementia fading away? – the story of Nicolina Toscano

2021 has been a bit of a whirlwind for me personally, and I cannot believe it is April already.  Coming up to Easter has made me somewhat reflective as it has been some time since I have seen family in Australia because of Covid.  It also reminds me that it is coming up to the 5th anniversary of my grandmother’s death. 

My nonna, Nicolina Toscano passed away on the 20th May 2016.  I had the privilege of being with her when she passed away, which was fortunately very peaceful.  She had lived with Dementia for about 15 years.  I remember talking to my mum at nonna’s funeral about how hard it must be losing her mother, my mum said, “I lost my mother 15 years ago not last week”.   Is this what it means when they talk about people fading away with dementia?

Nicolina’s Story

Nicolina Toscano was born in Salerno, Italy.  Possessing a fiercely independent streak, she did not tell her parents that she stopped going to school and lied about her age to start working.  After marrying and living with her husband on the family farm in Sicily, they made a decision to move to Australia to begin a new life after the devastation in Italy following WWII. 

Tragedy struck three years after she arrived, and my grandfather was killed in a workplace accident while working on the railway.  My grandmother decided to stay in Australia with her two daughters, rather than returning to her family in Italy. 

Nonna worked incredibly hard as a single mother and within six years, by working multiple jobs, she paid off her home in six years.  She never remarried and remained living in her own home for many years as her daughters married and had families of their own.  I have many wonderful memories of visiting and staying with my grandmother over school holidays with my sisters and cousins, or when I was sick and not able to go to school, but mum and dad still had to work. 

She fiercely loved her family and friends and was much loved by others.  She was very sociable and loved to spend time bowling, playing bingo or cards with friends, and bus trips to the pokies. 

Dementia and Fading Away?

There is often this perception that the person with dementia slowly fades away, and their identity is lost, and I have even seen lots of images that depict this.  Is this perception really true?

There is no doubt that dementia, does affect people in a variety of ways, not just a loss of their short-term memories.  Here at Meaningful Care Matters, we know that the spirit and core of who a person is remains even though they may be living with dementia.  I know this is true for my grandmother.  The core of nonna’s spirit, who she was didn’t change; her love of people and family, her feistiness and sense of humour remained.  For all the dolls that she kept giving my mother or hiding under the bed and in closets because she couldn’t understand why they kept giving her dolls (she knew they weren’t real!). 

I think this perception of a person fading away with dementia is probably also a result of how many people living in care homes feel.  People are often ‘put’ into a care home, and it is almost as though they are perceived as out of sight out of mind.  All too often, people are dying inside without any meaningful connection to other people or engagement in meaningful activities.  As people come to understand more about person centred care and the importance of feelings for people with dementia, this is starting to change. 

One of the things I wish I knew better back then, was how feelings matter most for people with dementia.  This is something that I do better understand now, and I think it would have made it easier for my mother to relate to nonna too if she understood this as well and had more of a focus on trying to understand the underlying feelings and emotions behind her actions.  While dementia may affect each person differently, they don’t fade away.  They are still there, deep down.  We have to take the time to connect with the person individually and cross the bridge to their reality.  We need to support families to understand and cross this bridge too and not to try and pull the person inappropriately back to our side.

AMANDA BEWERT
OT (Australia)
Managing Director MCM
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