14 Feb Saying goodbye to a lifelong battle and my hero Teresina Bernardo
There are people in our lives — family, friends, colleagues — who move and shape us. The ones that leave an incredible mark on us that cannot be explained in words alone but with a feeling that penetrates our core — a feeling of love, strength, inspiration or hope. You may have met this person once or known them all your life, but just the same, they are the ones you’ll never forget because who you are today is somewhat owed to them.
But what if these people, your memories, and all that you’ve ever known was one day all forgotten.
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
Despite not having the opportunity to spend a lot of time with my grandmother, from the moment I met her she left her mark. I saw so much of myself in her — her strength, her passion, her boldness, her humility.
When I was a teenager, I was approached by a woman, a stranger, who told me that “I carried so much water in my eyes”. She was a psychic. She explained to me that water symbolized emotion and I had a great deal of it inside of me, that of my own and others. For many years, I didn’t fully understand what that meant, however, I later learned it meant that I was an empath. I remember that same water in my grandmother’s eyes — perhaps, she was an empath too.
She had a way about her that always made you feel like you were home. She was warm; she was loving; she was accepting; she was the type of grandmother you hoped you’d one day become. And while I still have a lot of life to live to see if one day that will be true, my dad certainly took after his mother and lived up to the parent I know she was proud he became.
I see so much of myself not only in my grandmother, but also in my father, and I see so much of my father in my grandmother.
“In the advanced stages of the disease, the person eventually becomes unable to communicate verbally or look after themselves. Care is required 24 hours a day. The goal of care at this stage is to continue to support the person to ensure the highest quality of life possible.” — ASC
While Alzheimer’s stopped me from getting to know my grandmother as I would have liked, much of her memory has been passed on by my father. Alzheimer’s disease may have prevented my grandmother from creating new chapters in her life’s story but my father was sure to pass on the ones she had already written.
Some of my favourite memories with my own father are the ones where he has opened up and shared his life before me. The memories he built as a young boy; his mother’s dedication and hard work to their family; and, the woman she was before Alzheimer’s disease.
“Alzheimer’s disease remains incurable. However, medications, support and care early in the disease can help manage symptoms and improve quality of life.” — ASC
Growing up, I so desperately wished I could have shared my own life with my grandmother — to explain my goals, dreams, and accomplishments; to welcome her to my first home; to introduce her to my first puppy; and, to have her at my side at my upcoming wedding. How I desperately wished she could have been there. While I knew because of her health that wouldn’t be possible, I still thought I had enough time to one day introduce her to my husband. I never imaged that instead I’d have to say goodbye.
On February 10, 2020, the world lost Teresina Bernardo.
How hard it is to write these words.
While we know she is no longer suffering, we cannot help but feel the incredible void she has left behind. A father lost his mother; a granddaughter lost her grandmother; but heaven gained an angel.
For so many years I used my voice to advocate behind organizations like the Alzheimer Society of Canada and the Dementia Society of Ottawa and Renfrew County in honour of my grandmother. While I couldn’t give her hugs or remind her every day how much I loved her, I always hoped one day she’d see all that I had done and all that I will continue to do in her name — creating a legacy that no one would ever forget.
As part of this work, in the last five years, my family and I have taken part in the Walk for Dementia to honour my grandmother and all those living with Alzheimer’s disease or a related dementia.
This year, this walk brings new meaning to our family as we will continue to remember the incredible woman that shaped our lives and inspired us to keep fighting for those like her suffering from this incurable disease. I don’t know when a cure will be found, but I know that I will never give up on those still fighting. My grandmother wouldn’t have wanted it any other way.
For her, and others in our community and around the world, please donate to this year’s Walk for Dementia.
She may be gone, but I know that I now have her closer to me than ever … and in that small truth I find solace knowing that I have gained a guardian angel.
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