I’ve known something for a long time, but just admitted it to myself. Lewy Body Dementia has given me a gift that I despise. Two dads.
All too often, my days are spent going from thing A to B to C. A lot gets accomplished along the way, but there is rarely a chance to sit back and think about things. To cope, oftentimes I avoid thinking about our situation as a matter of subconscious choice. It’s easier than thinking about what we have in front of us with Dad.
And for me, it’s easier to just push it aside. People (even Matt) say to journal, write things down, talk to a counselor, etc. Explore, explore, explore. “It might help!” they say.
Um, no. No thank you. Too hard! Most days, I’d rather just crush the tasks that come before me as my source of coping and fulfillment….just keep moving.
The other day while with Dad at the dentist though, I unintentionally found myself thinking about things and noticed this about myself – about my coping mechanisms (or lack thereof). Avoid, avoid, avoid. It works well actually, until it doesn’t. While I get by day-to-day, it leaves me unprepared for when all the feels really hit. It feels like a hard smack in the face when it happens, complete with pain, sadness, and even raw disbelief. And there, in the dentist’s office I was being smacked in the face.
Dad lives with us and I am his primary caregiver. True. Then the smack: who lives with us really? Yes it’s Dad, and no, it’s not Dad. It’s a shell of him–literally a shell. His body is here (albeit different) but he is not (most of the time). In Dad’s place is Lewy Body Dementia.
Lively, amazing parts of the life-of-the-party, joke-cracking, big personality Dad are stripped away each day he lives on with this big, bad, ugly disease. I’m smacked in the face whenever the thought bounces through my mind. So I can’t think about that every day I greet him, eat lunch with him, help him put his shoes on, do exercises with him–it’s just too much.
As I was talking with him in the dentist’s office, I listened to myself and realized something else I’ve known for a long time. My subconscious treats him like he’s a different person entirely. Because in a way, it is an entirely different person that I’m taking care of, and thinking that way protects me from the sadness waiting to be acknowledged each time I see his emotionless face staring across at my shoulder instead of in my eyes.
Prior to Lewy Body Dementia invading Dad’s life, he was engaging, fun, smart, loving, incredibly hard working, funny, and undeniably a man of routine. Uniquely him, always. One part of the Dad “routine” that’s forever stamped in my memory was his daily ritual of doing back exercises before he went to bed. The way he did the exercises was always the same- down to the details. Remarkable consistency.
It was every day of my life into adulthood. The exercises were the last thing he’d do before going to bed. We knew Dad’s bedtime was approaching when he stood up from his chair, unbuttoned the buckle of his pants, set the pillow up, laid on the floor, and did the exercises. It was the same every time and he counted with his fingers in a distinct Dad way. He’d have his hands at his waist, start in a fist and then each finger would come out as he reached up for his knees and counted, 1, 2, 3, 4, 5. Each finger. One at a time. Every. Single. Night.
I hadn’t seen Dad’s exercise position since his diagnosis. Until the dentist’s office. As we were sitting there, I glanced over – Dad’s hands had assumed the position. Exercise position. And there it was, a smack in the face and all the feelings that came with it.
It was a cruel reminder (that honestly I just want to push away, so strange) that it was my Dad sitting in that chair – looking to me for what to do next. Looking at me when I got up to go to the bathroom, his eyes saying, “Where are you going? Don’t go too far.” He was in the chair, my Dad, not the different person. Seeing his hands in exercise position showed me the Dad from before Lewy Body. The Dad who I miss beyond words.
I took a picture of his hands because the visual shocked me so much. Sent it to my brother and sister because I couldn’t believe it. The past had just come surging up through the present. Such a small thing but such a gigantic reminder. Comical really – how much it rocked me back to reality. But it’s an indication of how different the person in front of me was than the person I remember- my Dad. Always there for me, Dad.
I’ve known it for a long time, but it took a simple trip to the dentist for me to fully realize the horrible gift Lewy Body has given me. Though I think I’ll keep letting my mind relax back to it’s natural tendency to separate my two dads. Grab and hold onto whatever coping mechanism I can. The grief and sadness is there. I’m just putting it off for another time. I’m just going to keep going. As long as I can.
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Rachel S. says
There is so much in this post that I can relate to. Avoid. Avoid. Avoid. Until you can no longer avoid. I am the caretaker to my mom and have been for several years. The roller coaster that is LBD is exhausting, frustrating and isolating. I commend you for your strength (even if you don’t feel it) and wish you and your dad (both of them) the very best.
Matt P says
Rachel – Thank you for reading and your kind words. All the best to you and your mom as well.
The Ro & Steve Team
Totally relate. I think most moms can in many situations. My mom finally passed away this summer after a few years of dementia. She chose to not treat her newer diagnoses of lung cancer which we all supported. I am only now really feeling it! Hang in there, it’s all so hard. I love that you started this site. I work in SNFs so I have a unique perspective.