ENRICHEnabling Research in Care Homes
Understanding Dementia: A Granddaughter’s Tale
My grandmother died when I was eighteen years old, having been diagnosed with Alzehimer’s Disease several years beforehand. I did not see her much as her dementia started to progress; I believe it would have been a landmine of confusion for both of us.
I was a young teenager, wrapped up in my own self-indulgences with no real understanding of the illness, and she was an elderly woman trapped in a disorientated and fragmented world, composed of shards of her former youth. As such, my memories of her during those years are few and far between. I can glimpse her sitting, slightly slouched on her old armchair in front of the fireplace, surrounded by ornamental dogs and gilded picture frames filled with faces of the family she cherished. She is wearing a white blouse with a navy jacket and matching skirt, slightly wrinkled flesh-coloured stockings and simple leather shoes. Her legs are crossed just below the knee. Her hair is white and slightly wavy and her face is weathered and marked with lines befitting of a woman who was never afraid of a hard day’s work. I perch on a tiny, cushioned stool against the wall and fidget. I don’t really know what is going on. I don’t really understand. My sister sits beside me with a smile straining across her face, as though it were battling through a more melancholic expression. She is eight years my senior and in this matter, infinitely more wise. My father stands by the mantelpiece, occasionally poking at the coal in the fire. He is still full of his usual mischievous humour, teasing my sister with sly remarks laden with wit and jovially conversing with visitors and carers, calling them all “kid” or “kiddo” regardless of age. Maybe he was putting on a brave face for us, for them, for himself. But my father is a rational man and his ability to accept serious matters with clarity and hoist a sea of troubles on his back without it breaking has always been remarkable. Every once in a while, my grandmother talks about unfamiliar people and places, while addressing my father with her husband’s name – the love of her life who died before I was even born. After the visit, we drive home. My sister and father chat in the front seats of the car, while I sit in the back and look out the window. My father has explained what’s wrong with my grandmother before, but I’m too young to comprehend.
The lost grandmother in the armchair was very different to my childhood memories of my grandmother. I called her “Nana”. Nana was a hardy woman with snowy hair and rosy cheeks. Every few Sundays, my father would collect me from my horse-riding lesson and take me to pick her up for a roast Sunday dinner. She would sit in the front of the car beside him and as we passed the church, she would ask him how he found mass that morning. Up to his old tricks, my father would spin imaginative tales about the priest’s illustrious sermon and my Nana would laugh, knowing rightly he hadn’t stepped inside the holy grounds. In my house, she would sit on the big brown leather settee in our sitting room and occasionally ask me questions, referring to me as “Baba”. In a way, I don’t have many recollections of her from those days either. However, I do have a firm memory of her strong presence, along with the feeling that no one could have pulled the wool over her eyes.
The year she died, I had just began my undergraduate degree in psychology. It was the beginning of winter and I had been updated unto her severely weakening state in the days previous. I was standing in a friend’s hallway on campus when I received the phone call to tell me she had passed away. I made arrangements to come home the next day on the bus and curled up in my friend’s bed and sobbed for my loss. A typical Irish wake was held, full of extended family, cups of tea, sandwiches, cake, laughter and reminiscing. I am one of the youngest cousins on my father’s side and therefore only familiar with a handful of the many relatives in attendance. Many of the unfamiliar ones exclaimed to my parents that they had not seen me since I was “this size” while gesturing to arbitrary but small distances from the ground, then peered at my face and wondered aloud as to which side of the family I looked like. No one seemed able to determine the answer (years later, it was concluded that I’m the image of my mother’s younger sister, after being mistook as her non-existent daughter several times on the same day). A joke spread throughout the gathering clan that my grandmother had timed her death as any hardworking woman would, with a wake to be held on the Friday, a funeral on the Sunday and everyone back in work for the Monday. My father shook well-wishers’ hands and slapped friends of the family on the back, all the while repeating “It was a happy release. It was a happy release”. I did not understand what that meant.
When it the time came to pay our respects to the body, all the grandchildren shuffled into the room with the open coffin in an orderly queue. I was near the end of the line. As those that had said their goodbyes passed me, I noticed several tears leaving tracks down their faces and heard the shaking breaths indicative of mournful crying. I steeled myself for my own physical manifestation of grief. But when I walked up to my grandmother and touched her clasped hands gently with my own and bestowed my parting kiss, not a single teardrop rolled down my cheek. It could not. This woman before me was not my childhood Nana, nor was she the lost grandmother in the armchair. This woman had twiglike arms and fragile skin pulled across a bony face, encircled by thin wisps of colourless hair. She was tiny and frail, and without a single ounce of fight left in her shrunken frame. This woman was alien to me. I walked away with my head bowed and lips pressed tightly together.
In the moment that I laid eyes on the last incarnation of my grandmother, a woman whose once-strong nature had forever been stamped into my mind, I understood. “It’s a happy release”. It was. My grandmother, my hearty Nana, had been set free from the imprisonment of her failing mind and her wasting body. I was finally comprehending what had been happening to her throughout all those years of illness. Alzheimer’s Disease and dementia weren’t just some form of extended forgetfulness. You weren’t simply mistaking someone’s name more often or losing personal belongings with increasing regularity. You were losing yourself, and with that, everyone else was losing you too. You were becoming a ghost.
At the end of last month, September 2015, I officially became a doctoral student in neuroscience. The focus of my research is early diagnosis of dementia, with the expectation that this could lead to earlier implementation of interventions and a slower progression of the disorder. My hope is that this research and other complimentary investigations will help to extend the number of years that individuals with this crippling disease have to live their lives in health and happiness with true presence of mind. Indeed, there is already an outcry for more commitment, more time, and more money to help the many already afflicted. And the numbers continue to grow.
To my Nana, I hope that someday grandchildren will not have to understand what I now do. And I endeavour to help make it so.
Riona McArdle is a PhD candidate in Neuroscience at Newcastle University. Interested in dementia and movement research. I blog at: http://www.brainnerd.wordpress.com