He never forgot us.

That was a random thought that occurred to me as I was wiping my tears following one of the many waves of grief that passed through me that day.

It was was three days after my dad passed away. I was still in shock, not able to honestly comprehend my dad was gone. I was confused and angry at the constant emotion of what I know now, as grief, that kept slamming my heart. My dad, is gone. That truth, took my emptied my lungs. Took my breath away. Dropped me to my knees.

BUT HE NEVER FORGOT US.

That truth warmed my heart.

We were told by doctors, well-meaning friends, support groups and all the in-between commentary “prepare yourself for the day he doesn’t recognize you”. We all knew, it was coming as we watched him deteriorate.

Yet that day never came. Through his drugged fogginess, fitful hallucinations, thick weariness, painful falls, and delirious confusion through the cobwebs of the tortured waking dream he was living – he always had a brief moment of recognition, complete with a nano-second of joy, when he saw us.

My dad died from Lewy body disease. He was diagnosed maybe in 2000 – and showed a very slow, but very manageable decline for years. Sadly, he was hospitalized March 28th for a totally separate issue, and due to a variety of contributing factors he developed something called Hospital Delirium. He died on hospice, four short months later on July 28th. Hospital delirium is a condition I’d never heard of, but it is real, terrifying, and 100% the trigger that caused my father’s rapid death. Lewy Body would have killed him eventually, but the delirium stole months and potentially even years from his life as it accelerated his dementia tenfold.

It’s been a month now that he’s been gone. I am still grieving, but it’s complicated, as grieving tends to be. People will tell you how hard it is to lose a parent (which you simply can not understand until you lose your own). What they don’t tell you is how personal, and multi-layered it is.

What I am experiencing, while I know not unique and many others must go through this too, are three separate layers of grief. They are:

1. Watching my mom live without my dad.
2. Recalling the terror and hell my dad lived in for four months as he spiraled to his demise. Figuratively, literally, mentally, physically and even spiritually.
3. Then, dealing with my own hard truth. My beloved, sparkly, funny, complicated but wildly generous and loving dad, is no longer on this earth for me to hug, hold and love.

The trifecta of those complicated areas of grief confuse me. They overlap and compete in my heart and brain as I try to process my loss.

I accept the loss. I accept he is gone. But I struggle where to place my grieving.

The first one, watching my mom grieve the loss of the love of her life, does something to my soul that I can’t explain. More than my own loss affecting me, I think her pain hurts me more. One, because I have my own husband I love so very much, and it scratches too close to the surface of the pain I may feel one day if anything were to happen to him. And two, my parents love, (and I am lucky enough to say this about my own love with my husband), was extraordinary and so powerful. They were more than soulmates, they were one another’s breath, heartbeats, reason for being. One did not exist without the other. I truly feel they shared the closest you can get to God’s highest transcendent agape love for us here on earth between humans. It was beautiful to watch them together. Seeing that earthly bond break, watching my mom now alone, void of that returned love from my dad which had filled and completed her for over 60 years, is devastating.

The second layer I am grappling with is replaying my dads final months. It tortures me. It tortured him. It was anguish and suffering in a way I didn’t know existed. He knew he was painfully and rapidly declining, yet he couldn’t articulate the pain and confusion he was experiencing to us. Mentally, he was living in hell on earth. He hallucinated, and cried and trembled and broke, day after day. His nightmares chased his waking hours, and he felt hunted, attacked, humiliated and petrified all at once. Physically, he reverted to the behavior of a young child. He was totally incontinent, and urinating and random bowel movements plagued us and him, often. He was unable to lie down and put his feet on the bed, he had to be reminded how to sit down, and get up. We brushed his teeth, dressed him, and redressed him as he constantly took his clothes, shoes and socks off. We fed him, or tried to help him feed himself, which became more and more of a challenge. Emotionally, he was defeated and full of despair. He desperately wanted to come home, to protect my mom, to be back by her side. Occasionally he was rationale (enough) and bargained with us – “well let me just come home ONE day, one night”. Other times, anger overruled him, and he would yell and berate us “how can you just leave me here, you aren’t listening to me, you never listen to me….”. And towards the end, just an acceptance of grief, no longer able to argue, to bargain, he became totally desponded and would just cry. He would shake and wail, eventually closing his eyes and laying there in silence, not answering us, as we tried to remind him how much we loved him.

The last layer, just accepting my dad is no longer here, baffles and crushes me. His presence was so strong. His love was so tactile, so visceral, so present and loud and comforting, I can’t grasp that his arms to hug me, his hands to hold mine, his words of encouragement and loving words of affirmation are no longer part of my universe. Replaced by only memories, this core loss alone is all consuming. Yet it’s squashed and often diluted, by the other two aforementioned traumas and layers of this loss I am experiencing.

So, I guess this is simply, my grief. My loss. This is something we all go through and although no two experiences will be the same I am part of this sad, confusing club of loss . But THIS journey is mine to go through, and reluctantly, yet with renewed faith, I know I must. It’s hard, it’s sad, it’s confusing and it’s so painful.

But my heart holds on to this.

HE NEVER FORGOT US.

Somehow, through the loss of his mind, his dignity and his pride, he never, ever forgot who we were.

His final words to me were “love you baby” as he reflexively kissed my cheek as I leaned in to tell him how much I loved him, and to thank him for being the father I needed and cherished on this earth for the final time.

He knew who we were until his dying breath. That is a gift I will forever cherish.