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 this month, September 2015, I will officially be 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.

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Book Review: My Stroke of Insight

‘My Stroke of Insight’ is a New York Times bestseller, written by neuroanatomist Dr. Jill Bolte Taylor. This powerful story has made a resounding impact across the world, through the medium of this book and Jill’s TED talk, which has received over 17 million views to date. I wasn’t quite sure what to expect when a friend handed me this book having determined it would be something I would enjoy from the title. I’m hugely interested in recovery from stroke and so the subject matter, a brain scientist’s own personal experience of having a stroke and their path of recovery, was certainly something that I was keen to read.

The book opens with a description of Jill’s past life, pre-stroke. She was a trained neuroanatomist who traveled the USA, encouraging clinical populations to donate their brains to science post-mortem. She enjoyed her work immensely and brought an air of creativity and uniqueness to it, as she was dubbed the “Singin’ Scientist” for the jaunty jingle she had created to relieve tension in these meetings. Following our introduction to Jill, she provides a good overview of the mechanisms of the brain. These are laid out in layman’s terms and are easily accessible to the general population. This brief tour of neuroanatomy allows readers to understand the source of the problem, which I believe is a vital component for comprehending the difficult subject matter. The core of the book details the events of her actual stroke and her steps to recovery. This candid account of her experience is novel; allocentrically, the reader watches as piece-by-piece her neural function shuts down and with it, her motor functions collapse, her speech becomes incomprehensible, her fixated attention becomes a distant memory. We learn of her struggle in the days and weeks after: the constant exhaustion, the incapability to communicate her wants and needs, her regression back to infancy. Yet Jill accounts for all of this in straight-forward manner: she facilitated her recovery by creating small, attainable goals and came out the other side of it as an ebullient and jovial woman. The book ends on a positive note, highlighting Jill’s renewed passion for life, deeply appreciative of many aspects of living that are easily taken for granted, like the feeling of raindrops running across your skin or the sound of your favourite music.

Throughout the book, Jill raises some excellent points with respect to the clinical treatment and examination of stroke patients. Personally I felt that these small suggestions and observations from a stroke survivor reflects the true seminality of this work. In a frankly honest tone, Jill illustrates the absolute necessity of feeling safe in the medical staffs’ care and the impact this holds over the recovery of the patient. She reminds us that these patients are not some stupid creatures to be cast aside thoughtlessly. They are human beings full of emotional turbulence and frantic need – they are wounded and frightened. Thus, good bedside manner is imperative and the strength and range of their remaining abilities needs to be taken into careful consideration for any and all interaction – even if that simply means lifting the lid off a plate of food in order for them to eat. Jill recounts how the staffs’ treatment of her played a role in her recovery: she would co-operate only with those who were kind and attentive towards her, and would choose to ignore those with whom she felt treated her in an inconsiderate and discourteous manner. She also describes her deep confusion and unhappiness with hospital policies, such as being asked to sign consent forms when her cognitive damage was so severe that she could not even understand language. Such aberrant treatment clearly bred an environment of dissonance for Jill during such a trying time, and may similarly be affecting many more suffering survivors. It is clear that there is a need to revise the guidelines for interacting with these types of patients, and garnering advice from stroke survivors may be a very good place to begin this process.

As I said earlier, this book also elucidated to some very thought-provoking opinions on assessment post-stroke. Although such examinations may appear simple and untaxing to the ordinary observer, to a stroke patient they are often exhausting and arduous. Jill speculates that the methods for assessment are simply concerned with matching performance to a criteria based on “normal behaviour” and fail to provide a comprehensive insight into what may actually be happening in patients’ brains. For example, the doctor may test if a patient’s recall is fast or slow, but will not take into account the time-consuming thought process that must be undertaken in order to grasp the mere understanding of the instructions, before even trying to carry out the task. Jill proposes that such practices would benefit immensely from a cohesion of information provided by stroke patients themselves based on their experiences.

Additionally, Jill draws some attention to reasons why patients may fail to make a good recovery (or certainly a remarkable recovery like hers!). She believes that patients often fail to recognize their smaller achievements, such as managing to grasp a pen again for the first time post-stroke, as real victories and so their path to recovery becomes elongated by their lack of belief in themselves. She also emphasizes the importance of wanting to try to relearn previous skills – without this, patients lack the foundation to propel themselves into recovery. One last casual observation made during the account of Jill’s rehabilitation also struck a chord of interest in me. She postulates that while we take many learned skills as abstract and irrelevant, it is surprising to find how much we really need them to conduct our day-to-day lives. The example she uses amused me, largely due to my ardent resilience to math during my school years: the importance of algebra in the calculation of where to put plates on a dish-rack when washing up.

While much of this book both intrigued and enlightened me, I did find the final few chapters more difficult to swallow – my time spent reading them felt like wading through quicksand that I couldn’t pull myself out of fast enough. Here, Jill reveals a very spiritual and mystical side of herself. Given her traumatic experience, this is a fully understandable paradigm to undertake, and her elation for life is deeply admirable. However, this is just not an area that encapsulates my attention. Furthermore, throughout the book Jill shows a penchant to lean heavily on the concept of hemispheric differentiation – the constant chatter of “right-brained” and “left-brained” failed to impress me. I felt that in this regard, she relied too much on the retired myth of the left and the right brain, rather than any of the more empirical evidence that have been demonstrated in studies of hemispheric specialization.

Regardless of my quandaries, I would recommend this book as a light and easy read. With less than 200 pages, it makes for an excellent companion on a long journey and provides a fascinating account of a brain scientist’s interpretation of the neural and cognitive events of her own stroke. Lastly, it is truly inspiring to read about such an exceptional recovery in the face of such extreme neurological catastrophe – and plants a seed of hope that such progress will become the norm in the future.

My Stroke of Insight is available to buy on Amazon here: http://www.amazon.co.uk/Stroke-Insight-Jill-Bolte-Taylor/dp/0340980508