Losing You, Bit by Bit

I remember the house I grew up in. I remember the smells, the creaks in the floor, the cupboards that didn’t close all the way. The big panoramic window that greeted you from the living room with a view of manicured backyard. I remember the remodel we did and how we had to sleep in the living room as a family and how I thought that was the coolest thing.

I remember the porch light always being on and the feeling of being a teenager whose friends always wanted to be at my house.

I remember the sound of the garage opening and they way my parents took pride in the house + the home they built together.

I remember what it felt like when I moved back home after my receiving my undergrad at UCSB.

It Had Changed.

The house felt different. It felt depleted and as if it were holding months of secrets. I felt different being there. You WERE different. Everything seemed to be different. And it seemed to happen overnight. What was going on? Why had everything shifted? Was it me? I chalked it up to the transition of moving home, of being back under my parents thumb again, of them relearning … or learning how to have an adult child back home. But after weeks of feeling “off,” my mom confirmed my thoughts with her declaration of wanting to leave my dad. (If you listened to my episode, this is the Lamps Plus moment). What the #)$&#)$& was going on….?

We couldn’t put our finger on it, but my dad was changing. He was withdrawn, he was quiet, he slept alot. My dad stopped taking care of the yard, stopped paying the bills and stopped taking care of himself. His hygiene fell to the waist side, his interest in me and my mom became nonexistent.

WHAT THE #$%(&#$ WAS GOING ON?

Days turned in to weeks, weeks in to months and the behavior continued to get more and more bizarre. My dad would pace around our house and the neighborhood, he would chain smoke and drink his two beers throughout the day. He would wear the same clothes and check out each time we tried to talk to him. Where was he? He felt so unreachable. He felt lost and vacant and I knew, in my gut, this wasn’t good. I knew I was losing him to something bigger and more fierce than he could explain. I knew he was losing himself too. How scary for him.

We continued this awkward dance of my mom and I trying all different methods to reach him for years. Begging him to see a doctor, demanding him to get check out, crying … screaming… brought friends and family in to our home to try and talk some sense in to him. Each time, he seemed to slip further and further away.

WHAT THE $&#($&#(*& WAS GOING ON??!?!

After a few unfortunate circumstances, he received his diagnosis and our questions, confusion and frustration was finally resolved. FTD. He had FTD and therefore had no control over himself, his behavior and his mind. What that must have felt like for him keeps me up at night.

Watching my dad escape his sane mind was one of the most horrific things I have ever seen. He faded in to darkness slowly and the person inside the shell of who he used to be fell quiet. Was he in there? This progressive, evading in to another headspace, remote and unreachable dad was a stranger to me, and perhaps I was the same to him. He slowly lost his words, his voice… his smile, his bright eyes and affectionate nature. And I lost the person who was my biggest fan, my first love and my voice of reason. He then lost his ability to walk. He needed a walker, then a wheelchair. He lost his ability to eat, so his food was pureed and fed to him slowly and with caution. He lost his ability to care for himself, to use the toilet, to connect….. and I watched it all happen.

Losing someone bit by bit is one of the most difficult and heart wrenching ways to leave this place for the place beyond. Losing your superhero, your person and a man that so fiercely loved life was something I was so unprepared for. I have walked the FTD journey alongside my dad and instead of living in a place of fear and heartbreak, I felt honored that I could care for him with the same tenderness that he cared for me.

I was privileged to be his caregiver. I was privileged to walk him out of this life and on to his next. But most of all, I was and still am so very privileged to be his daughter.

Always, always….