There is often a key event in the onset of dementia or Alzheimer’s that clues an onlooker in to the insidious arrival of one of life’s more debilitating conditions. It isn’t always seen until looking back, and it’s often the simplest and smallest of events. Sometimes it is a misplaced item, a key object that has never gone missing before and is suddenly found in the most unlikely of places – car keys in the freezer, socks in the desk drawer, an orange in the medicine cabinet. Sometimes it’s a sentence or phrase that makes no sense, has no relatable context in the conversation, one that forced the listener to pause and check their own hearing and perception because who knows who is losing their faculties first?
The first time I noticed a tangible change in my Dad was five or six years ago. It was a beautiful summer evening, and I’d driven to Amsterdam to drop off something for Mom. She was out somewhere, so I rang the doorbell to Dad wouldn’t be surprised when I walked in. Through the glass door, I could see him walking toward me, with a puzzled look on his face. As my visit was unannounced and unexpected, I first thought that was the reason for his confusion.
His gaze was usually sharp, keen and intently analytical when he focused on something. That night his face held a hazy and somewhat quizzical smile, and for a while I wasn’t sure he knew who I was. It was a large and dramatic leap to make, especially as this was the first time I ever noticed it, but looking back I see it was the beginning of the slow but steady debilitation – the long decline had begun. It pained me more to think maybe it was the first hint of him not knowing who he was, and rather than scare me he fixed a weak smile on his face and let me into the house.
His gaze would return to its sharp stance the next time I saw him, and stay there for a year or two. But it had begun, and slowly the eyes grew gray and faded, losing their focus, losing their recognition, losing the joy we once might have elicited from him.
That first day it happened I think was the hardest. That’s when the grieving for me began, and in the following years it has been a slow and constant grieving, a sorrow I fight against in finding little bits of hope that grow ever more scarce and elusive.
It is the longest goodbye yet it comes with the danger of not having the closure that most endings have. There will likely not be a goodbye of recognizance, at least not one that will be transmitted to those of us left behind. Maybe that’s for the better, maybe that removes the sadness of the occasion for the person transitioning. I don’t know – this is well beyond me, and it will always be beyond me.
As the years progressed, and the days grew dimmer, the space and the world that Dad occupied grew ever-smaller. Before, he had the run of the world – his reach extended as far as his means could take him – and that was entirely around the world. Though he wasn’t big on travel, it was always possible. That was one of the first things to go, as he lost his ability to safely drive. He still had our magnificent house and yard to traverse, and someone was always on hand to bring him to wherever he needed to go. That slowly came to an end, as his ability to make it up and down stairs decreased, limiting him to one floor, and then one room. Soon enough it will be one bed or chair.
Worse than the physical decline was the mental deterioration. Always one of the sharpest people I’d known, Dad was never easily fooled. He saw things and voiced his take on them, not always in the kindest manner, but you always knew where he stood, and he always stood on the side of honesty and bluntness, cushioned by a keen sense of humor, ever ready to laugh at whatever nonsense his sons or the world was throwing at him. Watching those aspects drain from him may be the hardest part of seeing him get older.
As the bad days began to outnumber the good days, and Dad was confined to a single room, I searched for glimmers of hope, any little thing that brought him slowly back to the man I once remembered.
‘Are you in there, Dad?’ I wonder like a little boy, sometimes out loud, contemplating my own decline and wondering at my own sanity. I trust he is, even if he doesn’t say it, even if he doesn’t recognize things, even if we don’t recognize what is happening in his head. There is so much in shadow now, but I still hold onto that belief because it’s all we have.
On Father’s Day, the only way I have of honoring him is to share this in a silly blog post, in words he will never read, in sentiments of love he may never feel, but I will never stop trying, never stop sharing how much I have admired and appreciated him, never stop loving him.
Happy Father’s Day, Dad – I love you.
