When I was a little girl, I idolized my dad. The ease in which he moved through life, his gentle nature and compassionate soul made being with him feel like being tightly embraced, pulled into a warm hug that could cure the worst kind of day. I remember being in awe of him and his light, his steady hand, the way he made anyone he spoke to feel important. From the joyful and lighthearted years of childhood to the trying, sticky years of adolescence, my dad was a place of solace for me, carrying my burdens and guiding me as I grew into myself, albeit at moments – begrudgingly. 

The shift wasn’t overnight. It was gradual. He became more withdrawn, more self-isolating; he was different. The incremental changes we (my mom and I) were seeing were growing increasingly bizarre and we were becoming increasingly confused and incorrigible. Months of perplexity and pleading for him to see a doctor turned into years of his own denial. Nothing is wrong, he would tell us. Just a little blue spell. Months faded into years as he became a shell of a person, keeping mostly to himself while continuously refusing medical care. He started drinking, pacing our block and repeating the same phrases, even when the situation didn’t call for it. I thought for sure I was witnessing a psychotic break or perhaps a midlife crisis (on a good day). I thought for sure once he agreed to see a doctor, it would be an easy fix. 

I have never been more wrong

When Everything Changed

On December 11, 2011 – my life was shook to the core and immediately split in two. A time before, and a time after. I was 22 and my dad was officially diagnosed with Frontotemporal Dementia (FTD) via PET scan. After a short stint in jail, my dad was “sentenced” to a halfway house where he began eating from the trashcan and perusing other people’s belongings in their rooms. The director of the facility ordered medical support which led to intensive testing.  All these peculiar and unusual behaviors, the disengagement, the drinking, this 180 degree flip in his entire personality was caused by progressive neurological disease that has no treatment AND no cure. I remember never being more thankful for answers while simultaneously being so heartbroken.

My dad lived with FTD for over ten years until his death in 2020. During his illness, I was thrust into a role I never thought I’d play in my 20’s. I became his voice, his feeder, his decision maker, his chauffeur, his hands… I became his caregiver; an all encompassing position fueled by the deepest love and the strongest hope. I made it my mission to make his remaining years so full of tenderness and peace. As I look back now, I feel so genuinely honored that I was able to usher him through his disease and through a beautiful end of life experience. His journey with FTD is over, but the remnants of this experience have shaped my life in so many ways that I remain beyond grateful for. 

Watching my dads mind slowly cave in while relentlessly losing him to this devastating disease was something I was not prepared to witness. Seeing my larger-than-life Dad fade into the darkness of his deteriorating mind, I, more often than not, had to remind myself to stay present, remembering this won’t be forever. But the days were hard, they were taxing and all consuming. There is no manual to provide the step by step directions on how to assemble the perfect caregiver, but there is something intrinsically intuitive about becoming one. And let me tell you, that was one of the greatest gifts to come of such a colossal loss. I learned to lean into that little voice in my gut that already knew what to do. I didn’t need google, or medical journals. I needed to rely on the love and relationship that was cultivated in years prior. I needed to trust myself. 

Leaning Into Instinct

… And that’s what I did. Sure, I listened to doctors, and never went completely rouge, but when a tough decision presented itself, I went inward instead of polling others and spending countless hours googling. I relished in the quiet and tuned in to the gentle, omnipotent voice inside me, inside all of us. Its instinctual guidance was the most powerful tool in my toolbox. 

There is something so sacred about loss and grief, exposing the depths of heartache and leaving people different than they were before. Watching my dad through his journey with FTD cracked me wide open, taking me to my edges and allowing me space to rebuild, to find a deeper more meaningful life on the other side. I see the world differently, it’s clearer now. It was both brutal and beautiful to experience and to witness and I can tell you now, I have never felt so lucky to have endured both. Observing a life ending, to have a front row seat of the great wind down while concurrently knowing this particular life is being cut severely short is such an intense place to be, it’s left a significant imprint on me as it, among other things, shifted my life’s normal. A ripple effect, if you will. It has affected more than one facet of my life  

What Grief Left Behind

I will forever miss him and yearn for him to meet my children. He will always be the first thought that comes into my mind when someone tells me to make a wish. And I will forever be grateful to witness the beauty in the breaking and the beautiful feeling of coming home to yourself when the dust settles.