It’s been a year since I wrote Behind the Mask. It’s been nine months since my father started experiencing rapid cognitive and physical decline. It’s been six months since the last vestiges of the man he was were barely visible, tenuous threads holding a tattered mind to a decaying body. It’s been three months since he died.

It was yesterday that I missed his calm wisdom, his acerbic wit, and the comfort of the warmth of his voice. It will be tomorrow when I again lament his loss — not just his passing, a sad and bitter mercy — but the loss of his heart, mind, and soul, before his body simply could not continue to function.

We try to tell ourselves all kinds of stories as we approach this final chapter in the life and death of a loved one suffering from dementia. We hold on to the tiniest moments of light, hoping they can keep the dark and overwhelming ones from drowning us in our sorrows. When confronted with attempts to comfort us on our loss, we highlight what was, the love we shared, the memories we now carry forward in their honor.

What we don’t do is admit that those very memories are eternal open wounds. Yes, you remember the things you enjoyed together, but then you remember when the disease robbed them of the ability to ever do that again. You look fondly back on the love and affection shared between you over the years, but that recollection is forever tainted with the grief that they didn’t even know who you were before they were gone.

I’m not calling this “Part Two” because it’s a follow-up to that other essay; this is me writing about Part Two of the grief and loss of Alzheimer’s, the lasting damage it does not just to those who fall victim to its malicious nature, but the scars it leaves on those who are left behind.

The grief is complex; we are mourning them long before they are dead, missing them long before they are gone. There is a quiet after they pass — the day-to-day noise of caring for someone who can no longer care for themselves gives way to the hushed logistics of lawyers, funeral homes, and government services. It is in this silence that our pain morphs and changes.

All deaths are followed by recollections. Memories. Eulogies. But in circumstances like these, it comes with the pain that these memories are of things we lost before the ones we loved were gone. It’s not just the loss of the time we wish we could still have with them, it is the loss of the time we had with them before their time was over.

My oldest was born four years ago. Being a father is something I’ve always hoped to be, and a significant part of that was the love and pride my own father had in being a parent. I wasn’t the best kid in the world, and my dad wasn’t perfect, but I know that being a Dad was a prouder achievement for him than any feat of engineering he designed, a greater sense of service and purpose than his time in war.

Dad and I talked about everything. Politics. Religion. History. War. Music, games, movies. Philosophy and science. My voracious appetite for knowledge (hi, Hermaeus!) came, in large part, from him. I cannot count the number of social events that wound up with him and me standing off to the side, shy around the crowd, but deeply engaged in our own conversations about whatever topics sparked our curiosity in that moment.

I mention these two points because their intersection is one of my greatest losses. Though he lived to see both of his grandchildren come into this world, while he loved them and played with them and read to them, he and I never talked about me being a father. Not in the way that we could talk about anything, in the before times. In the years between my first child’s birth and my father drawing his last breath, we could never plumb the mental and emotional depths of this journey I had begun, this endeavor that brought him such joy and pride.

It was not for any lack of trying on my part. I shared my questions, hopes, fears, observations and reflections. I tried to engage, to pull on the torn threads of his mind to grab hold of any advice, thoughts, perspectives that he could share from his life as my dad. There was nothing there. He would tell me my kids were beautiful, and he meant it, but he could never once tell me what he felt when he was in the same time and place that I then was. Sometimes I’d get a sentence. Sometimes a word. Sometimes he didn’t even know I was talking to him.

I never got to talk to my dad about being a Dad. He never told me he was proud of me, as a father to a son who became a father. What encouragement and affection he offered in those waning years was always genuine, but always lacking the depth of mind and heart that was the mark of our conversations. Of our relationship.

So this is Part Two. Navigating the labyrinth of anguish of what was gone before they were. Reconciling the sweetness of the place they hold in our hearts with the painful sting of our mind acknowledging all that was ripped away from us.

When they are gone, the words of others come in a flurry: “Sorry for your loss,” and “Now they’re at peace”. We respond in kind: “We’re focusing on the happier times,” and “We’re just taking it a day at a time.” We mean it as much as they do. But it is what we do not say, what we cannot say, that catches all other words in our throats, that makes our hearts sick and our minds a frayed knot of emotions that we struggle to untangle and understand.

There is the obvious, the unanswerable. “Why?” and “How much of him was still left the last time he squeezed my hand and said ‘I love you’ before his brain stopped letting him form words?” We cannot know what we cannot know, but understanding this limitation to our own awareness does nothing to stop these questions from haunting us.

Then there are questions unique to this kind of loss, unspoken queries that anyone in the same position finds themselves wondering, the silent worries that no one talks about when the end finally comes: “Could anything have been different? Did this thing cause it, or did that event make it worse? Did we make the right choices for them when they could no longer choose for themselves?” And of course, for those who suffered through the years of watching a genetic relative succumb, the question we all wonder and never speak aloud: “Will this happen to me? Will I put my family through this same slow and suffering march towards an ignoble death?”

Even here in the midst of writing this, putting pen to paper in the possibly vain hope that it can reach someone, help anyone, even just one other soul experiencing what I am, I feel lost. I still wear the Mask. I took my time off from work for ‘bereavement’, and returned to pretending that I am not shattered by his death and the years of agony before it. I say nothing of the internal terror raging in my mind as I look ahead to the years in front me, wondering if I can ever escape this pain. Wondering if the clock is ticking down on my own sapience.

This is Part Two. This is what is left in the wake of Alzheimer’s, the festering mental wounds and unhealing emotional scars on the souls of the ones who live on, tasked with honoring the memories of those who lost theirs before they lost their lives. I don’t know if there’s an end to this. I know a thousand voices can say in a million words, “I understand.” I know millions more have no words, whether their voices have been stolen by this cruelest of fates or their silence brought on by suffering this greatest of losses of a loved one.

I do not pretend to speak for anyone else. All I can write, as it’s too often said, is what I know. And what I know is this: it’s been a year since I last wrote about this. It’s been three months since Dad died. Yesterday, I missed him. Today, I miss him.

Tomorrow, I will miss him.

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If you wish to donate to the fight against Alzheimer’s, please consider giving to the Wes Johnson / Fallout For Hope’s Tiltify Fundraiser, or donate directly to the Alzheimer’s Association.