Living with Alzheimer's: a grandaughter's perspective

Mollie Drew

It started with the simplest things: leaving the front door unlocked; unplugging the fridge and telephone; even taking a lump of cheese into the cinema, things that didn’t matter, and to an extent, seemed humorous at the time. All those minute little things that appear insignificant but yet lead to the beginning of loss, loss of the daily routine and grasp of life in general. A person who was once a son, a father, a husband, a brother, a grandfather… and a lover, slowly slipping away into an unconscious world full of shadows and unknown, leaving an empty vessel. Nothing can quite prepare you for the moment when you sit across the room from someone who means so much to you, knows you so well and their face is empty, expressionless. Imagine, if you will, vaguely recognising people and places, having millions of fragments of pictures that just don’t add up or connect to make one complete memory? It’s an unexplainable, incomparable, incomprehensible state of mind, which can be likened to as 'having a living funeral'.

It was a Sunday, late in September where the sun was shining but there was no warmth, in the air or the company. A trip to the seaside, one that had been done so many times before and was of comfortable familiarity, that used to be anyway. Always accompanied by loved ones, but somehow left feeling terribly alone, and sometimes even scared. Walking along the pebbled beach as a young, carefree child suddenly became a distant memory; reality hit like the waves crashing against the shoreline and it was no longer clear who was the child and who was the adult. To all intents and purposes - the onlooker and the passer by - everything seemed normal. How beautifully deceptive to be so naïve. Fish 'n' chips was always the end goal, an integral part of the outing: the oh so familiar smell of salt and vinegar combined with the rustle of newspaper, cradling the food sat on the sea wall. Would this be one of the lucky memories, one saved for reminiscing on another day like a photo in an album that’s always there. One you can flick back too and smile fondly at? Unlikely story. It will be lost, along with all other familiarity.

The absence of daily function became blatantly obvious when sequences of events blurred and disconnected, in such a way that an innocent confusion of timing led to sheer pandemonium. Something triggered that it was time to collect the children from school; a route so often taken even neuronal malfunctions firing around the brain couldn’t be off putting. On arrival something wasn’t quite right; instead of the gate being wide open and awash with friendly, smiling faces it was shut and the playground full of screaming, chaotic children. It didn’t occur to me that although an unfamiliar reception it was the wrong one. I spotted my grandchildren in no time. That welcoming, infectious grin was second to none and without a moment of hesitation I hopped over the gate and watched as they bounded toward me. Embracing them had always been one of my favorite things. Completely in our own bubble the three of us made towards the main school to collect books bags and sign out, and it wasn’t until it registered that people were staring and pointing towards us that something was the matter. An angry, middle-aged lady was walking in our direction. She looked a mixture of confusion combined with sheer panic shouting at me ‘Who are you? What are you doing, step away from the children!’ I couldn’t understand why she was being so absurd, these were my grandchildren and I had come to collect them from school. The lady grew angrier to the point of infuriation. Consumed by confusion I watched helplessly as she picked up the phone and dialed the police. I couldn’t understand what was going on: the children where taken off me and my daughter was phoned.

It became apparent that this was the first sign that something was really wrong. From this moment things really changed, I became a living experiment, a subject to many different doctors who constantly ran tests and scans. The medication prescribed cannot cure the disease but simply improve the symptoms or temporarily slow down their progression. In some people - the lucky ones – at least. The loss of nerve cells is related to the severity of the disease and the symptoms people experience. Donepezil, rivastigimme and galantamine prevent the breaking down of these nerve cells, which can stabilize the growth of the dementia. In addition to this stabilization comes the loss of feeling and general vibrancy of an individual. The beginning of death creeps into the eyes that once looked at you with such fondness, the medication draws out all personality and kills it, leaving lifelessness, suppressing the pain as well as the individual. Although some normality can be restored through the regiment of prescribed medication it does little more than subdue the unpredictable nature of the disease, the contrast is not fathomable. One day can be so positive, even hopeful, but quickly reversed by a violent outburst from a petrified, worried victim.

Dementia as a disease can only be described as losing a person several times over, the glimpse of hope you are taunted with adds all the more pain. It kills not only humans but relationships too. There is one common thread amongst all sufferers, seeking identity in old memories. A longing, yearning to go back to the safety of their childhood home. There is no comprehension that time has moved on and people may have passed away, a whole lifetime is lost. The disease owns you, consumes you and those closest to you, it shows no remorse.