I once heard Alzheimer’s being referred to as “the memory thief”. And a thief it certainly is – an unwanted and unexpected visitor with a limitless appetite who keeps coming back for more. I saw it when it chose my father as its victim and slowly striped away his memory at first, and later some parts of his personality.
My father in his years before he met Alzheimer’s was the person everyone wanted to be around. He was just magnetic; everyone gravitated towards him without effort. He loved spending time in the kitchen, both cooking and eating, and hummed and tapped his feet whenever the radio played. One of my most prominent childhood memories involve the family sitting around the television during the Christmas season watching the Sound of Music while my dad whistled along with every song.
His years during Alzheimer’s have changed this. He’s more quiet and reserved, albeit still as charming as ever. His culinary interests have become non-existent, and even his fondness for the taste of fine cuisine has started to descend down a similar path. But one thing has remained consistent and largely unchanged – music. He still lights up at the sound of music, whistles down the halls and sways his body from side to side to the melody. When it comes to music he’s 16 going on 17.
Our recognition of this led him to join a senior’s harmonica group. He had taught himself to play in his teenage years and has maintained the skill despite his diagnosis. This allows him to be both socially and mentally active, as well as connected him with a group of warm and welcoming people who shared his love of music. Together they spread their passion beyond their own circle and are often invited to play at various long-term care centers and cultural organizational events, including the most recent one where he performed his very first solo.
When I was young, my father gave me the perhaps very cliché advice of “Do what you love and you will do it well. When you do what you love well, life will be meaningful”. He’s far from a Carnegie Hall performer, but I believe these performances make him feel like one. He’s doing what he loves and life has become meaningful again. These performances give him a sense of independence, ability, and self-esteem in a time when these qualities may become increasingly difficult to find. As such, it is my greatest hope that this is a part of life the memory thief allows us to keep.
When my father was formally diagnosed with Alzheimer’s disease at the age of 60, after 4 years of living with mild cognitive impairment, his doctor told us not to despair; this didn’t mean it was the end of the world. Many people are still able to live well despite the diagnosis. Truth be told, if Alzheimer’s was a tangible object I would lock it up and bury it at the end of the world where it would live out the rest of its days in misery and isolation. But this wasn’t the reality, nor was it realistic. I couldn’t slow it down, or stop it in its tracks, or make it go away.
I once thought of Alzheimer’s as a losing battle – a strenuous uphill climb, only this one didn’t end with
conquest when you reached the top. A great number more people suffer from horrible diseases like cancer; the only difference is more and more people are beating cancer. No one has ever conquered Alzheimer’s. This is not to say diseases like cancer are any less significant or cause less grief and destruction, but the fact remains there is no cure for Alzheimer’s. Treatment is palliative (it merely works to minimize its symptoms, not cure it) and its effects are modest at best. Still, I eventually learned I was wrong. In this uphill battle I’ve won many victories, and still refuse to let Alzheimer’s have the upper hand.
Victories come in many forms. It happens on days when he enthusiastically wants to participate in his day activities without the need for encouragement. Or when he actively socializes with his friends, reverting back to the charismatic and charming fellow who sometimes now hides in the shadows. Or when he surprises us by recalling a detail no one expected him remember. I declare my own triumph on days where I can sense my patience wearing thin, and am able to take a breath to collect myself again. I even take days without his having an emotional outburst as my own conquest.
It may still be an uphill battle and yes, the road is long and winding, but there’s no reason we shouldn’t be allowed to stake our own victory flags along the way.
Story Submitted by Sara