Trying so hard to connect.
With every disease there are layers. So many dimensions affecting the diseased and the people who love them. I've learned to adjust living with my Dad’s dementia. I feel like I got the best years with him. He and my Mom raised us, inspired us, shaped us into the adults we are today. For that I'm grateful. .
But I struggle with what my kids are missing--being robbed of. A sensitive layer of disease is the loss of relationships. I can't help but fantasize about how my Dad would interact with them. I think back, to his beaming face in the crowd, at my school performances; of him sitting next to me in preschool, helping roll marbles through paint across paper. I think of the glimpse I caught of him--his figure watching me through a window as I raced across campus to get first dibs of my chosen classes during college freshman orientation weekend. He later told me he’s never felt prouder as a parent as he was in that moment. .
It saddens me that my boys will never see those expressions. Sure, Dilip and I try our best to fill that gap. They don't know any better. But it doesn't satisfy someone who's lost the option of that relationship. .
The irony with dementia is that he IS here. He's physically present. He can look right at them, yet he can't tell them he loves them, or how proud he is. He can't come to their performances or tee ball games. He can't celebrate their accomplishments or comfort them during failure. I try try try to focus on the positives, I do. But sometimes the negatives are so blatantly in your face--I want the satisfaction of complaining. .
I don't know if it makes me feel better. It just makes me feel. It makes me feel like I'm telling the disease off. Punching it in its ugly face.
My heart aches for my boys and the emotional deprivation both they and my Dad face.
I'm grateful they have the fortune of knowing him at all. I know too many who didn't even get this far. #sundayvisits#zainyorke#livingwithdementia#losingmydad#livingwithaghost