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Losing our memories and our selves

Carolina Earle explores the impact of dementia and the importance of our memories on our selves

The passage of human life is marked by an aggregation of experience. These experiences, and the memories of these experiences form a great part of who we are. What does the ‘self’ become, and what do we lose when we are no longer able to remember the experiences and moments which shape us? To unwillingly and unwittingly lose ourselves is a state of being which most fear. And yet, one in 14 of those over the age of 65 in the UK are afflicted by dementia. Their experiences and capacities—from inherent motor dexterity to long-term memories—are whittled away. As we lose our memories, we would seem to lose grasp of who we are. It is for those who have known us to remember us. Losing one’s memory is to increasingly lose the understanding of the self, all whilst remaining unaware of our own degradation.

There are various forms of dementia, including Parkinson’s and Alzheimer’s disease, with the latter remaining its most prevalent form. The symptoms of those afflicted range from problems in language, to a decreasing faculty of judgement, to changes in mood. Whilst some patients are outwardly perceived as aggressive, others are described as vacant. What is true of all its forms, however, is that its symptoms worsen over time, affecting not only actions in the day-to-day but the entire ‘self.’

A family friend of mine, Evelyn Welch, who is unrelated to the early modernist historian, saw dementia first-hand. Her mother was afflicted by dementia in her later life, with its appearance a devastating, ever-worsening and inescapable fact of both their lives. Evelyn has worked for different pharmaceutical companies, one of which—Eisai—focused to a great extent on Alzheimer’s disease. Her mother was diagnosed with vascular dementia at the age of 80. One day she would sit by her mother, who was no longer able to grasp that it was her daughter who sat by her. And yet, through the strikingly clear—though scarcely conceivable—pain of watching the course of dementia as it took hold, Mrs Welch would always remain ‘mother’ to Evelyn, and never became a woman who she no longer knew. This loss was the crushing and devastating human manifestation of the diseases and chemicals which had taken hold in her brain.

As a child, Evelyn’s mother would stand by the window, waving goodbye as she and her brother made their way to school each day. A blue-badge tour guide from the age of 50, Evelyn’s mother would guide tourists around London—from the dungeons to Buckingham Palace—reciting facts and the history of the city in both English and fluent French to her tour groups. She made sure to maintain a working knowledge of essential news-items, and was always improving and developing: fresh knowledge formed a key part of her repertoire. She was kind and incredibly astute. The most brutal irony of Mrs Welch’s disease would rest in the fact that her memory had been so great. She lived until the age of 94, never afflicted by any major physical disease in the last decade of her life, never in pain. Her heart was strong, and this was true both emotionally and physically.

Despite this physical health, Evelyn’s mother was the one in 14 of those above the age of 15 in the UK afficted each year by dementia. Despite touring until the age of 70, exercising and stretching her mind, this was not enough to counter her affliction. Evelyn cannot pin-point the moment when she first realised that her mother was suffering from vascular dementia. She remembers how she had taken her mother to the doctor, where they discussed the need for her to undertake a mastectomy. Retrospectively, she wonders if this was near the moment at which her mother’s dementia truly began, if this was when the symptoms of the disease first began to present themselves. For even as her mother seemed to engage with the doctor, she remained unable to fully grasp what was being explained to her. It would take another five years for Evelyn and her family to be able to confirm the onset of the disease.

Indeed, when her mother was 80, it was a call from a pharmacist which first alerted Evelyn that something was truly wrong. That day, her mother had returned five times to the same drug store down the road. Each time she asked for, and bought, a tube of fixodent for her dentures. To her, the pharmacist’s exclamation that Mrs Welch had bought enough that day to open shop herself would have seemed absurd—it was evident that for Evelyn’s mother each trip was the first. It was then, when someone outside their family circle had noticed the undeniable affliction of what was on a day-to-day basis a more imperceptible loss of astuteness, that the severity of small lapses and previous worries came abruptly to the fore. This was one of the first of increasingly severe episodes which came to form the daily reality for Evelyn’s mother and her family.

From a biological standpoint memory is multi-faceted: we differentiate temporally between the memories which last mere milliseconds—allowing us to see and understand a panorama by the layering of snap-shot images—and those long-term memories which last for many years. And yet, fundamentally, memory is conceptualised in the cultural and emotive sphere. What one might crudely take as mere ‘images’ at a biological level, are imbued with and inspire emotion. It is memory which writes and underpins both our personal and national histories, shaping our perceptions of the past and of the present. In short, if one is the sum of their parts, what of those parts without the memory which would ostensibly give these parts their meaning and purpose?

Evelyn recalls one of the more terrible moments which took place at one Christmas a few years on. She had hosted a dinner party, attended only by close family. Throughout the evening, her mother had continually asked her a million questions—“have we,” “where,” “what…”. And in the early hours of the morning, as Evelyn stood in the kitchen, washing the piles of dishes from that evening, her mother came to her asking what she was doing. Despite the fact that mere hours before the home had been filled with noise and the people she had known and cared for a lifetime, it was evident that Evelyn’s mother in no way recalled that anyone had come to them, or anything of the course of the evening. Evelyn remembers her frustration as she led her mother back to the living room, and how upon returning to the kitchen she stood “crying my eyes out”. And yet, when she returned to see her mother—to apologise for her frustration, to see how she was—Mrs Welch simply turned around and said “hello” to her daughter. She was surprised to see her and said that she had not realised Evelyn had been in the house.

Evelyn tells me how her mother’s prolapsed bowel prevented her from going out by herself. Though it made her weaker and weaker, Evelyn painfully calls it a blessing in disguise. To know that her mother was inside was to know that she was safe. Her loss of memory and communication, despite her ability to perform the most simple tasks (unlike the affliction of Alzheimer’s, whose symptoms may comprise an inability to perform such basic, internalised actions) meant that she would be unable to explain to someone where she lived if lost or if asked, where she was going, nor who she herself was.

On hearing Evelyn’s story, I think of my own mother. My mother, who has seen and held me at my worst and my best, who I do not need to explain myself to, who understands my gestures, my grunts, who indulges me, and rights me, and who knows who I am and all that I have done.

I think of my grandmother who is now 85. She’ll call me by my sister’s name before letting up a well-humoured chuckle as she retraces her steps, correcting her mistake. How she hugs me, and still calls me ‘tesoro’ and who makes sure her hair is brushed, (sprayed with volumiser if the occasion is a special one), and lipstick done before she makes her way slowly but surely to the shops and to the doctors, or on walks through the neighbourhood. And yet, she refuses to allow anyone to help her as she hangs up the washing or bends down to cut herbs in the garden for her cooking. She has always remembered to call me on my birthday. She lets loose great bursts of elegant laughter as she recalls how my grandfather stepped on her toes at their first dance, or how she and her best friend sputtered along together in a rickety at when they learnt how to drive. Her eyesight has deteriorated, and yet, she knows who I am. If I were to open the front door one day to my beautiful nonna—she will always be the most beautiful soul to me—and be received by a blank stare where all that life was held before, with no attempt to recognise a face that she no longer knew, the least I would do is cry. The least.

For, though she would never be lost to be me, she would be lost to herself and I may be lost to her. It is a thought that pains me to entertain, I hesitate to write words that I pray will never come true. And yet, this was the painful reality of what afflicted Evelyn’s mother, and that which Evelyn saw happen to her mother, as each day she would move less and perceive less. She was always obliging to her carers, thanking them when they came, four times each day. And though she would attempt to show interest in the pictures Evelyn placed before her, it was evident she did that her mother did not realise the faces looking back at her in the pictures were family, with little idea of who was beside her.

Evelyn never believed her mother was gone—she says that she lived in the hope that her condition would improve, despite telling me that deep down in her heart, she knew in her heart that she would not. And yet her brother—a musician—wrote a song for his mother, ‘The Girl in the Window.’ Mrs Welch no longer waved from the window after a visit from her children, and as with the disappearance of this recurring gesture, for Evelyn’s brother, he felt that he had lost his mother, too. Evelyn tells me of the small victories: keeping her mother in her own home, as she had expressed a wish for years before; the painlessness of her slipping away; the way she sang along to very old songs and how she knew to answer in French when her relatives called from abroad: her peace.

And yet, it would be self-evident to say that the whittling away of memory, and the whittling away of the self took much of her mother from Evelyn. Though Mrs Welch lived to the age of 94, her daily life became a routine, as she became increasingly vacant to the world and the people around her. To listen to such a story is devastating, and the pain of living through such a numbing and hitherto irreversible process unimaginable.

I talked to Jina, the head of European and American affairs specialising in dementia at another pharmaceutical company. She tells me that though difficult, companies are making progress in producing more effective medicines for dementia.

Despite the failure of all clinical trials in the past ten years to produce effective treatment, she explains that studies are now evolving. There is a move to focus on earlier diagnosis and treatment, in order to prevent the deterioration of the brain before the symptoms of Alzheimer’s and other dementias present themselves in their strongest form. And yet, the complexities of producing an effective drug are ever-present: from the billion-dollar cost and the question of governmental funding to the under-prioritisation of care for the elderly. Despite reserved views on David Cameron, Jina tells me that under his tenure, funding for research in her field has increased. She tells me that the industry has had a history of international collaborations, and continues in this vein. Though a long process, and a difficult one, it is this science, and these billions which are hoped to one day prevent the degradation of memory and the vacuum which has taken so many like Evelyn’s mother.

We will continue to exist even if we do forget, and we will continue to disappear into the great fabric of the world, even if we are able to remember. And yet, the devastation of a life unknowingly lived is the painful truth of dementia, and it is Evelyn’s pain, and unwittingly that of her mother which we hope will one day be remedied by drugs of the likes produced in companies such as Jina’s. To forget is to lose, and it is the ability to know that you are living which strives us to work towards remedying such premature loss. Where there is life, there must indeed be hope. We must remember—as far as we are able—that we cannot forget those whose memories are being drawn from them, not resigning ourselves to helplessness or the difficulty of this affliction.

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