Ever since I was a young child, Alzheimer’s disease has played a large part in my family’s story. As a little girl living in Canada, I first encountered Alzheimer’s disease when my grandmother (Nonna), Teresina Bernardo, came to visit from Italy for the very first time over 20 years ago.

I didn’t realize then how her inability to remember small details in our conversations would one day lead to her inability to remember me at all … but soon enough it had.
Each visit since my grandmother’s first visit in Canada brought with it new introductions and with that, probably the most emotional phase of the disease. She was with us, but at the same time she was not.

I’ll never forget our last visit. She was sitting in her kitchen telling us about her son who moved to Canada whom she loved very much … that same son was sitting in front of her that day, my father, but she did not realize it.

With each visit, the disease had progressed. From asking what was for dinner, forgetting, and asking again, to eventual silence and a complete loss of memory and function. It was a long and slow progression that spanned for me … almost my entire lifetime.

As of 2016, an estimated 564,000 Canadians are living with dementia. By 2031, this figure is expected to rise to 937,000, an increase of 66 per cent. Worldwide, at least 50 million people are believed to be living with Alzheimer’s disease or other dementias.
— Alzheimer Society of Canada (ASC) / Bright Focus Foundation

For those of you reading this and learning about Alzheimer’s disease for the first time, there is so much hardship to this disease that medical definitions fail to define.

Dr. Alois Alzheimer first identified the disease in 1906. He described the two hallmarks of the disease: “plaques,” which are numerous tiny, dense deposits scattered throughout the brain that become toxic to brain cells at excessive levels, and “tangles,” which interfere with vital processes, eventually choking off the living cells. When brain cells degenerate and die, the brain markedly shrinks in some regions. — ASC

For my family, Alzheimer’s disease crippled us. In the early years, with an ocean between us, it prevented us from picking up the phone and sharing our day or milestones with our grandmother. With time, however, it not only stripped her of the small details in our conversations, but eventually of her ability to recognize her children, grandchildren, and life as she knew it.

“I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I can’t offer it the names of the US presidents in exchange for the names of my children. I can’t give it the names of state capitals and keep the memories of my husband.” ― Lisa Genova, Still Alice